Responses are provided as general educational resources and should not be interpreted as diagnoses, prognoses, or treatment suggestions.  Information and perspectives represent the views of the individual author(s); Can Do Multiple Sclerosis is not responsible for the accuracy or currency of the responses.  Readers should consult with their healthcare team.

Occupational Therapist Response
Linda Walls, OTR
Can Do MS Programs Consultant


The fact that you have identified the factors that impact you the most during the winter is the first step. Now you need to start to plan to manage these issues. I emphasize starting a plan, because all too often cold weather comes, and before you know it, weeks have gone by and you have not been able to stay active. First, explore your options for having help with driving. Perhaps you could ask a friend to drive you to the mall or grocery store, and in return, you can buy them coffee or lunch. Ask different people, so you don’t feel like you are burdening any one friend. The National MS Society may have resources on local transportation.  If you plan several options now, the chances are greater that some of your plans will work out to help you stay active.

To help your activity on a more consistent basis, you could also explore taking a yoga class or another group exercise/activity. Not only will this get you out of the house and break the cycle of isolation, the benefits of stretching and moving may help limit the pain that the cold brings on.  If you cannot get to a class, try some videos at home to incorporate activity into your day. Even a 15 minute yoga video, 3 to 5 times a week, could have a big boost in your activity and energy levels, your muscle strength and your overall wellness. 

You could also try to plan activities at your home so you do not need to find different modes of transportation. Invite a friend or a few friends over - the preparation and the event will give you the extra push to stay active. Do not over stress yourself – for example, have food delivered.

The goal is to keep yourself active, feeling positive and in control. If you feel you are managing your symptoms, you will feel like you are in control, and that is the goal to control your lifestyle, not to allow your symptoms to control you.

Maintaining your lifestyle is very important in order to maintain your quality of life. While ideas for management are important, you should speak with your neurologist or primary care physician to discuss your symptoms and make sure medical management is under control.

There is a growing amount of research that cold weather does impact the symptoms of MS, particularly with pain.  Dr. Julie Stachowiak has written several articles on this topic, including this blog for the National MS Society.

Ask-a-Question

Physical Therapist Response

Sue Kushner, PT, MS
Can Do MS Programs Consultant

I also love yoga!  My two biggest suggestions are “Do Not Stop” and “Modify, Modify, Modify.”

Yoga is wonderful for multiple sclerosis, helpful with everything from balance and coordination to flexibility to strengthening and aerobic activity.  The beauty of yoga is that you work at your own pace; there is no competition; you are doing this for YOU.  Accept that the yoga you CAN DO now may be different, but it still can have the same physical, sensorimotor, emotional, and spiritual impacts. 

Here are a few tips:

  • Consult with your healthcare team to determine WHY yoga is more difficult for you and potentially unsafe.  A physical therapist can help you recognize vestibular issues and compensate for loss of strength/muscle mass.  An ophthalmologist can determine if your imbalance is due to a vision issue like optic neuritis.  A podiatrist can see if there is something structurally wrong with your foot.  A nurse or neurologist can help you with sensory problems.  They can also look at other medical issues or reactions to medications.
  • Once you get a handle on the causes of your imbalance, continue to use your team! Physical therapists and occupational therapists are wonderful resources for ideas on modifications and adaptations.  Adaptive yoga instructors are becoming more prevalent and can tailor a program to your abilities.  Psychologists can help with the emotional aspects of adapting from the way you once loved to do something to a “new normal.”
  • Focus on restorative yoga: activities that can restore strength, range of motion, flexibility, comfort from pain, coordination, and balance.   There are many websites, DVDs, and phone apps that offer easily modifiable ideas for restorative yoga.  If you need to sit to do yoga, that can be done.  You can lie down on your back or stomach.  You can use straps or belts to help guide your moves and help with balance.  I love these yoga straps for stretching hamstrings, upper extremities, etc.  If possible, I’d recommend recruiting a partner that can assist you. 
  • Look for restorative yoga classes in your community.  The social and motivational aspects of community yoga are wonderful. I’d recommend calling your local chapter of the National MS Society and checking the Yoga Heals Us website at http://www.yogahealsus.com/gpage3.html.
  • Many yoga studios have a bar that you can hang on.  You can also hang onto a counter top or chair at home.  Of course, safety considerations here are paramount (physical therapists and occupational therapist are great at providing safe at-home modifications).  If safety is a concern, there are enough yoga moves that can be done sitting on the floor to get what you need.
  • If you can stand safely for yoga, think about your footing.  Being barefoot is usually preferable.  Also look at where you are standing: while you might like a soft rubbery flooring or cushy carpet in case you do fall, I’d rather see you on a hard mat on a hard surface. 
  • Use mirrors.  Although these may be discouraged by “traditional yogis,” mirrors can tremendously help your balance. 
  • Use firm foam yoga blocks.  They can help make your arms longer and bring the floor up to you. 
  • Swiss balls and Physioballs are also great, but can be precarious for your balance.  Use under the guidance of a physical therapist.  If you are looking at physioballs, I recommend a peanut-shaped one.  They are much more stable and less likely to roll.  Straddling them or sitting in the divet of the peanut can make you feel more secure. 
  • Think about the time of day you are doing yoga.  You want to do it when are feeling better.  Often times, people slump in the afternoon.  Keep track of when you feel particularly fatigued or more prone to falls and avoid these times. 
  • Continue to educate yourself on yoga and explore new ways to continue this important wellness activity safely.  On the Can Do MS website, I recommend this webinar that I co-presented on yoga and non-cardio exercises. The National MS Society also offers a brochure and website on yoga and MS.







 

 

 

 

 

 

 

 

 

 

Nurse Practitioner Response

Stephanie Buxhoeveden, MSCN, MSN, FNP-BC

Can Do MS Programs Consultant

Congratulations! I also went back to school while living with MS, and I know that it takes a lot of determination, sacrifice, and planning, particularly around scheduling, habits, and finances.  Compensating for cognitive issues in order to be a successful student is extremely challenging, but I have adopted some strategies that have really helped. Some of my fellow MSers who are also wading through school have shared their study tips with me too. Together we made a list of 15 strategies for being a successful student, despite the challenges MS can bring:

1. Highlight and underline

I always read and re-read every lecture until I can’t stand looking at it anymore. While I do that I underline everything I don’t already know, then highlight things I REALLY don’t know and need to spend the most time going over before the exam.

2. Read out loud

When you feel your mind wandering, and seem to be re-reading the same sentence over and over again try reading the material out loud. If this drives your family nuts, well that’s just an added bonus (just kidding, love you guys!).

3. Record lectures

If your teacher allows it, record the lecture on your smart phone or with a recording device. Listen to it again at home while you are studying your notes or even just doing chores. I also like to listen to them while I’m driving in the car.

4. Make a color coded calendar

Organization is absolutely key. I use google calendar and have a color coded system. School deadlines are in green, bills are in yellow, birthdays are purple, and social events are pink. I would never know where to go or what to do without my calendar! Color coded Post-It notes  are also essential, and you’ll find them littered all over my desk!

5. Schedule study sessions for the time of day that you are least fatigued

Are you fatigued all the time, or do you tend to have a good hour after your morning coffee? Know yourself and make school a priority when you are feeling good.

6. Start studying at least 1 week before the exam 

The days of cramming are over for me! It just adds stress, and I can’t possibly memorize a ton of information quickly anymore. Instead I divide it into manageable amounts of material and spread out the studying over 7 or more days.

7. Mnemonics

Mnemonics are a popular way to memorize information. I personally find that they can sometimes help me get through an exam, but I always tend to forget the information again within a couple of days.

8. Don’t just memorize, understand the concept

Once you understand a concept it’s harder to forget, rote memorization is only a short term solution.

9. Use pictures to understand concepts

Teachers include pictures in their lectures for a reason- they help information stick! Some teachers even have students draw pictures of what they are learning, and studies have shown that this method is effective. For instance if I was trying to understand how a medication lowers a fever, I could draw a little picture to help it stick in my head.

10. Resist the urge to procrastinate

You never know if you are going to feel terrible tomorrow, or forget to do the assignment all together if you put it off. Never leave for tomorrow what you can do today! Reply to e-mails as you get them, complete papers ahead of the due date, etc…you’ll thank yourself later!

11. Schedule your errands ahead of time

I plan which days I will run each errand for the week, and coordinate them with my study sessions whenever possible. For example, I like to study in the morning but I know I generally loose my ability to concentrate around lunch so that’s when I’ll plan on running to the grocery store.

12. Don’t forget to bring assignments to class

Print out/gather any assignments that you need to bring with you to class the night before and leave them by your keys so you are less likely to forget them.

13. Know yourself and your symptoms

Keep a journal for a week and try to find patterns. Then make your schedule around them, not the other way around. I feel better in the morning, and tend to get fatigued and have headaches the later into the day I go so I like to schedule classes for as early as possible. But it takes me a long time to get going in the morning ,so I always make sure to be up a couple of hours before I have to be out the door. Everyone is different, but remember the goal is to learn and better yourself. That’s hard to do if you aren’t taking care of your body. Do everything you can to make life a bit easier.

14. Plan easy and healthy meals for the week

Knowing what you are having for dinner each day ahead of time takes the stress of planning away. It also lessens the chance that you eat take out or junk food, which just makes you feel worse down the line! Stay hydrated, and set aside time to exercise and relax. It helps to reduce stress, and it’s just as important as getting good grades!

15. Make the commitment

We all have a million better things to do instead of study, but in order to succeed you have to make school the priority. Remember, it’s only temporary!

(Originally published on multiplesclerosis.net; reprinted with permission by the author)

 

For more information, read this article that Can Do Multiple Sclerosis edited along with the National MS Society.


Registered Dietitian Response

Baldwin Sanders, MS, RD, LDN

Can Do MS Programs Consultant


Vitamin B12 is a water-soluble vitamin, important in the functioning of the nervous system and helps maintain the myelin sheath.  The association of B12 and MS has been studied but without definitive results.  Certainly, there no definitive evidence that B12 is “good” for MS.  However, deficiencies in B12 can produce symptoms similar to that of MS, such as fatigue, depression and memory loss.   

According to the National MS Society, “Vitamin B12 is found in eggs, meat, poultry, shellfish, and dairy products. The RDA for vitamin B12 is 2.4 micrograms/day for both men and women. Also known as cobalamin, vitamin B12 is required for the production of red blood cells and for proper function of the nervous system. In fact, a severe vitamin B12 deficiency produces neurological symptoms similar to those seen in people with MS.

A variety of observations have suggested that there may be a relationship between B12 levels and MS. For example, people with MS have low levels of vitamin B12 in their blood more frequently than the general population. Some have unusually large red blood cells. This can sometimes be caused by low vitamin B12.

For all people with MS to supplement with vitamin B12 on the basis of these associations would be a mistake. However, B12 deficiency can be evaluated through a blood test. People with low levels should consider vitamin B12 supplementation. For other people with MS, there is no evidence that vitamin B12 either improves neurological symptoms or favorably alters the course of the disease.”

Your healthcare provider can have a simple blood test done to look at your B12 levels and can provide supplementation if necessary.  For more information on possible associations between Vitamin B12 and MS, the International Journal Preventive Medicine released this article from 2012.  More recently, Dr. Julie Stachowiak wrote this article for Verywell.  


Social Worker Response

Deborah Miller, PhD, LISW

Can Do MS Programs Consultant

Pain is one of the most common and complex symptom for people living with multiple sclerosis.   It is estimated that approximately 65% of the MS population experiences some form of pain, which is an internal experience that others cannot see. Pain is a complicated symptom to address because it has many causes and many treatment approaches.  Some people do experience daily pain, but if this is case, you should see your healthcare team because there are strategies for managing pain.  Pain left unmanaged is often associated with poor quality of life with respect to emotional well-being, personal relationships, concentration, and physical functioning.

When pain is caused directly by MS because of a demyelinating lesion, it is called MS central neuropathic pain. It may be continuous and produce dysesthesias or abnormal sensations of the skin that are described as tingling, burning, aching, or band-like and can occur spontaneously or by touch.

Episodic central neuropathic pain is sudden, violent, and can be described as shooting, stabbing, or crushing, and is caused by a “short circuiting” of the nerves that carry sensation. There are 3 common episodic central neuropathic pain syndromes; Trigeminal Neuralgia, Lhermitte’s Sign and Painful Tonic Spasms. The treatment of these types of pain typically involves taking one of several classes of medications. It may take several trials to determine the most useful one. Trigeminal Neuralgia, the most painful and complicated of these conditions, may require surgical intervention.

MS non-neuropathic pain is typically associated with the complications of MS disability. Musculoskeletal pain, including neck, back and joint pain, is often secondary to deconditioning, abnormal walking patterns, incorrect use of mobility aides, and stress on bones. When this type of pain is acute, it a “protective” physiologic signal from your body that it is being injured. If left untreated the condition that produced acute pain may convert to chronic pain even after the injury is healed. This can result in tense muscles and limited mobility. Two types of pain that result from a mix of neuropathic and non-neuropathic pain are muscle spasms and headaches.

Because chronic pain impacts so many areas of a person’s life with unknown causes and still undiscovered cures, the most effective approach to pain management is known as the bio-psychosocial model. This is a comprehensive approach to treatment that incorporates the unique physical, social, and psychological/emotional characteristics of the person being treated. Management approaches typically begin with a thorough evaluation by a pain management specialist. That is followed by a combination of self-management techniques including mindfulness, mediation, and talk therapy that are typically learned with a mental health professional. Stretching and other exercises provided by a physical therapist or occupational therapist, medication managementusing several different classes of drugs, including marijuana where it is legal, as well as minimally invasive procedures in targeted areas of the body are also important aspects of the bio-psychosocial model.

The most effective plan for any individual to manage the complex pains associated with MS requires attention to physical, emotional and social well-being by the patient and their team of health care professionals. It is very important for individuals living with MS pain to address it as soon as possible so that the best and most holistic management plan can be implemented.

Click here to get even more great tips on this topic by watching our archived webinar on Managing Invisible Symptoms in MS: Pain Management.  Also, this webinar and this article by fellow Can Do MS Programs Consultants Chris Nesbitt and Abbey Hughes offer some additional strategies.  Finally, the National MS Society has great resources, including the MS Navigators, who can be reached at 800-FIGHT-MS.


Psychologist Response

Roz Kalb, PhD

Can Do MS Programs Consultant Coordinator


I think your instinct is correct -- your worries about your son's diagnosis may be causing you to move a bit too fast. When young adults receive a diagnosis like this, they need time to react, deal with the shock, and grieve over this change in their lives.

Their initial reaction may be that “this changes everything” -  including their present situation, as well as all of their dreams and plans for the future. Or, they may react in the opposite way - vowing not to let the MS interfere with anything. Of course, the realities of MS are somewhere in between. But each person needs to come to that realization in his or her own way. Not knowing your son at all, it's impossible for me to say what might be best for him. Some people cope by jumping in with both feet, trying to do everything and manage everything at once.  This may be closer to your style than his.  Others take more time to figure out how best to move ahead, which may be closer to his style than yours.

As parents, we want to protect and care for our children no matter how old they are. We want to try and make things better for them just the way we did when they were small. Ultimately, however, your son needs to find his own way with his new diagnosis, even if it's a different way than you would choose. When he's ready, I hope that he will learn about the disease from his healthcare providers (especially a neurologist with expertise in MS) and credible sources like Can Do MS (cando-ms.org) and the National MS Society (nationalMSsociety.org), while starting treatment with one of the approved disease-modifying therapies as quickly as possible. There is now ample evidence that the sooner a person starts treatment, the more effective it is in reducing relapses, lesions on MRI and disease progression. If your son needs help finding a neurologist the National MS Society (1-800-344-4867) can help him with referrals.

All of this may take him a bit of time.

We know that overall wellness - including a healthy, balanced diet, exercise, and stress management - are important for all of us, including people with MS, but your son may need time to come to these decisions on his own. In the meantime, I would recommend that you let him know that you are there to support him and to help in whatever way he needs. Let him be your guide.  A psychologist that specializes in MS can also be a valuable outlet for parents in your situation by helping you develop strategies for your own grieving, coping, and communicating.

If he is open and ready to hear about helpful resources for people with a recent diagnosis, you can let him know about the following:

Knowledge is Power -- a learn-at-home series for those who are newly-diagnosis (www.nationalMSsociety.org/KIP) that covers topics including treatment, working with your healthcare team, employment, relationships, staying health, etc. 

GPS for Your MS -- a webinar from Can Do MS (www.cando-ms.org/multiple-sclerosis-programs/webinar-series/gps-for-your-ms-1)

MS Path 2 Care -- a series presented by Can Do MS in partnership with Sanofi-Genzyme and the Society for Participatory Medicine (www.MSPath2Care.com)

Sometimes it is easier to get information and recommendations from someone other than one's parent! Please know that Can Do MS and the National MS Society also exist to support you -- so please don't hesitate to come back to us with more questions, or contact one of the Society's MS Navigators at 1-800-344-4867.



Physical Therapist Response

Jane Wetzel, DPT, PhD

Can Do Programs Consultant

While walking is certainly an excellent activity for weight loss, many individuals with MS have a problem with balance. Changing the TYPE of exercise can help tackle this problem. Research has shown you can burn calories most effectively if you use activities that use lots of lean mass… so both arms and legs should be moving. When we walk, we naturally incorporate arm swing. When your balance is challenging, you need to see if you can learn to walk with poles, which can be found inexpensively at many sports stores (Dick’s, REI, Cabela’s, etc.). The poles help keep your balance. You a can also burn lots of calories by using a NUSTEP or Aerodyne bike (see below)

        

Once you figure out the types of safe exercises that work best for you (it is highly recommended that you consult a physical therapist or exercise physiologist), the next step is to figure out HOW LONG you should exercise.  First, consider your RATE OF PERCEIVED EXERTION (RPE).  The RPE scale (see below) is a way of measuring physical activity intensity level. Perceived exertion is how hard you feel like your body is working.  You should focus on getting to a 4 or 5 on this scale (as PT can also help you understand what a 4 or 5 feels like for you).  Then, start counting the number of minutes you can keep moving at a 4-5 rating. You need about 150 minutes a week.


Another great way to exercise while managing balance is to join a water aerobics class. These classes are often available at the local YMCA and have beginner groups. If you can handle deeper water, it will be easier to move without balance limitations. If you want to challenge yourself, move to shallow water. You might ask the YMCA if they can recommend a swim instructor with a background in modifying for special conditions and try a few individual lessons first.

Strength training can help with the coordination issues and also build lean mass. Try sitting in a chair and then standing, first with and then without armrests. Try first moving from a high seat…. Then lower the seat as you get better. Try and see if you can do five sit-to-stands in under 12 seconds…. Or count how many you can do in 30 seconds. Also work on lifting weights (which can be as simple as a can of beans) and strengthen the key muscles for stability – Calf muscles, Quadriceps, Hamstrings and Buttocks.

Also, remember that losing weight also has a lot to do with what you eat.  A nutritionist or dietitian can help you develop a diet and plan of action.  Can Do MS and the National MS Society offer a variety of programs and resources on healthy food choices that can help with weight management.

Losing weight is very challenging.  Your team can also help you set reasonable goals, which are very important to implement sustainable behavior change that leads to positive and long-lasting outcomes.  Set a reward for yourself- a movie, massage, etc.- then write down the food you eat the activity you do.  Once you accomplish your goal, reward yourself! Then, set another reasonable goal. 

There are many other resources on Can Do MS that can hopefully provide with more helpful information, including:

Weight Management and Nutrition Webinar

Don’t Weight for Wellness

Improve Your Balance

Staying Vertical: Reduce Risk for Falls

Tangible and Non-Tangible Aspects of Exercise



Exercise Physiologist Response

Alex Ng, PhD, FACSM

Can Do MS Programs Consultant

Thank you for this great question, and yes you heard correctly!  Research in recreational ballroom and salsa dance for persons with MS has been published or presented recently that shows beneficial effects of partnered dance for persons with MS.  (Because you mentioned foxtrot, I am assuming you are asking about partnered dance.)  Benefits of regular social dance include improved endurance, balance, gait, self-reported quality of life, and cognition.  As a bonus, dance is also a fun form of physical activity that can help persons with MS meet their exercise or physical activity goals.  In the case of partnered social dance, your partner can act as a balance aid, allowing for activity that might not otherwise be safe.

There is no guarantee that regular dancing will increase the tempo of music you could dance to, but it might, and it could also improve your endurance or how long you can dance.   If you are comfortable with a slow foxtrot, then you might also try a slow rumba or even a waltz.  All these dances are danced in closed position which might be best if you are concerned about balance.  In the case of waltz, instead of a box step you could modify the step pattern to a simpler country western style; in other words, you could ditch the box step in favor of a linear progression.  The beauty of partnered social dance is that you can fit the dance type or music tempo to your ability.  To summarize, there is no fundamental reason not to enjoy dance again if you are living with MS.  You may need to experiment to find what works best for you, but once you dial it in, you may discover both physical and emotional benefits.

Here is a copy of a presentation I facilitated on dancing and MS.  Your healthcare team, particularly a physical therapist, will also be a great resource to learn more about exploring dance moves that will be safe and beneficial for you.  Your local chapter of the National MS Society may also connect you to local instructors who specialize in adaptive dancing.

Driving Rehabilitation Specialist

Ali Azin, OTR/L

Here are some resources you may find helpful.  I highly recommend the National MS Society video on driving evaluations:

Driving Evaluation: A Step Towards Independence

Staying Independent: Driving with MS 

Driving with Multiple Sclerosis

Association of Driver Rehab Specialist

National Mobility Equipment Dealers Association 

SAFER DRIVING: The Enhanced Driving Decisions Workbook


Also, check out a webinar on driving and MS that I presented with Cecilia Capuzzi Simon, as well as two articles Cecilia wrote on the psychological impacts of changing driving abilities.

Driving & Multiple Sclerosis Webinar

Driving with MS: A Psychological Perspective

Car Talk



Veterans Affairs Response

Angela Y. Young, Director of Education & Training

Multiple Sclerosis Center of Excellence - East

The Veterans Affairs Multiple Sclerosis Centers of Excellence (MSCoE) provide a wide range of life-long health care services to Veterans with MS. All enrolled Veterans have access to VA’s comprehensive medical benefits, but certain benefits will vary from person to person, depending on each Veteran’s unique eligibility status. The list below identifies some of the many services that may be available to you as a Veteran. For more information visit the Veterans Benefits Administration website at www.benefits.va.gov or www.vets.gov, or talk to a member of your VA health care team.

Through a collaborative integration of clinical care, education, research and informatics, MSCoE is improving health care services for Veterans with MS. For additional information, visit www.va.gov/ms.

Certified Therapeutic Recreation Specialist Response
Gus LaZear, MBA, CTRS

For Can Do MS, this is a very special topic because Jimmie Heuga believed very strongly in the importance of staying fit through sports, which can be modified around what you CAN DO.  Here is a video of a Can Do MS adaptive golf experience.  While your father may feel that he can't play golf the way he used to, MS does not need to define his ability to continue playing the game he loves.  A great example is Alice Plain, who also thought she had to give up golf after she was diagnosed with MS.  Not only was she able to adapt, Alice became the PGA Director of Golf at Vail.

I am excited to hear that you are interested in learning about adaptive golf and getting active with your dad!  First, I would find a local course that has an adaptive cart – such as a Solo Rider. You can learn more about what this is at http://www.solorider.com/. At my rehab facility in Phoenix, we have a unit called the Stand Up and Play paragolfer. Both work great, but they may not be for everyone. Some just need a regular cart and additional time.

To help determine what adaptations he may need, I would start by contacting your local office of the National MS Society.  Society-sponsored adaptive golf experiences are becoming more popular across the country.  They can also direct you to local organizations, such as Fore Hope, who have professionals dedicated to helping golfers adapt their game. Play Golf America, sponsored by The Professional Golfers’ Association of America (PGA), includes helpful information and resources, including an online search tool to locate PGA professionals with experience providing instruction to people living with disabilities.  

Once you have determined your father's needs and the right equipment for success (which are becoming more common and standard in the industry), it's time to make sure YOU understand what you need to adapt, if necessary. As when you started golfing, it is important to go to the driving range, chipping and putting greens to learn or relearn basic golfing skills.  Also, don’t feel rushed when playing golf, let others play through, and go at YOUR own pace.  Maybe start with a par 3 course and grow into the back nine at your favorite course. With MS, understanding your environment and how it impacts you is the key to success.  Start small and go from there.


Nurse Practitioner Response

Cheryl Blaschuk, RN, FNP, MSN

Can Do MS Programs Consultant

Pelvic floor exercises, also known as kegel exercises, can strengthen the bladder muscles making it easier to hold urine for longer periods of times.  They may help with urinary incontinence, which is a common symptom in MS.  Because there are several types of kegel exercises, I recommend being evaluated by a physical therapist who specializes in pelvic floor rehabilitation.  They can help create a specific exercise that will be both effective and safe for your physical abilities.  The hardest thing is finding a pelvic floor therapist.  Start with your neurologist, urologist, physical therapist, or a women's health clinic.  They should be able to refer you to a pelvic floor therapist, or someone else in the community who could make such a referral.  Finally, it is important to note that there are no kegel exercises specifically for seniors.

You should learn and practice exercises only after being evaluated.  However, here is some more background information that you may be interested in:

“Bladder & Bowel Issues,” by Dr. Susan Kalota

“Bladder Issues,” by Pat Kennedy, RN

“Using Kegel Exercises to Manage Nuerogenic Bladder in MS,” by Dr. Revere Kinkle

“Pelvic Floor Disorders Are Common Among Patients With MS,” by Dr. Bruce Crawford

“7 Tips for Dealing With MS-Related Urinary Problems,” by Wendy Henderson

“MS research update – Pelvic floor training and electrical stimulation to treat bladder symptoms in women with MS,” by Multiple Sclerosis Trust

Physical Therapist Response
Michele Harrison, P. T., CSMS, ATRIC, ATP
Can Do MS Programs Consultant

We know that exercise is essential in our lives to maximize our health and to improve our ability to participate in all the activities that comprise our lives. Once we have committed to this concept there are a few things we need to do to be successful:

  1. Choose an activity you enjoy participating in.
  2. How accessible is the exercise chosen to my abilities?
  3. How accessible is the exercise chosen to my location?
    a. What local and financial resources are available

Aquatic exercise is a great option for exercise for many reasons. A couple of benefits include:

  1. Greater ability for movement and standing up due to buoyancy in the aquatic environment.
  2. If the water is the appropriate temperature, it is a great way to be active and stay cooler.

The next step is to locate a pool in your area. If this is a recreation center, then there may be exercise classes and programs available, or a person may choose to participate in their own workout during open swim times. Contact your local physical, occupational, recreational therapist or exercise physiologist for information regarding an effective aquatic exercise program that can address endurance/fatigue, strength, balance, flexibility and mobility is important. The local National MS Society chapter or MS clinics may offer classes as well. Sometimes there really are no local pools close enough to utilize. Some people have private pools or decide to have one built for their own residence. The options for this are numerous and varied. A custom therapy pool could be designed and fabricated to most any specifications desired. There are above ground pools and pools that are in ground. There are pools that accommodate only one person or multiple people. There are pools with a variety of sizes, depths, pool surfaces, seats and whirlpool jets, for example. A decision for pool design will be driven by the types of activities the person wants to participate in. For example, if a person want to swim laps but has limited space in their home or yard, they may want an endless pool. This is a pool that is 1 lane and has a current to allow a person to perform laps while swimming in place. This style could be used with or without the jets for water walking but configuration will limit other uses. Someone that wants to do other exercises may need a space that is bigger to move around in.

Other considerations include pool depth for the best utilization of buoyancy, ability to sit for rest breaks during a workout if needed and access to a pool. There are a variety of ways to get in and out of the pool including a ladder, steps with or without a railing, ramp or a lift (this could be a permanent lift or mobile). A pool that is above ground may not be as easy to get into and out of but more economical and easier to install. Safety and ease of getting in or out of a pool consistently is important. There are small walk-in types of pools with a door but these are very limited in space and sometimes expensive options. The person putting a pool in there residence also needs to think about the expense of putting the pool in but also the continued maintenance to keep the water clean and safe for use. The tests to keep the chemicals and Ph levels often require daily maintenance. Is the pool indoors or outdoors with only seasonal availability for use? This needs to be considered as well.

Do people use a private pool? This is the $1,000 question. As with any type of exercise equipment, it is up to the person and their motivation to use the equipment, not to just look at it. If you are motivated and able to schedule use of the pool 3 – 5 times per week, it may be a good investment. However, if you only use it occasionally, finding an existing local pool may be a better choice.

There are a number of custom therapy pool designers and manufacturers. There are often local pool designers as well.

Endless Pools or Waterwell
1601 Dutton Mill Road
Aston, PA 19014
(866) 559-7946

Hydroworx
1420 Stoenridge Drive
Middletown, PA 17057
(800) 753-9633

Ferno
70 Weil Way
Wilmington, OH 45177
(937) 382-0895

Whitehall Manufacturing
15125 Proctor Ave.
City of Industry, Ca 91744
(800) 782-7706

Aquatic Access Inc.
417 Dorsey Way
Louisville, KY 40223
(800) 325-5438

Physical Therapist Response
Mary Kay Hausladen Foley, PT, GCFP, CHTP
Can Do MS Programs Consultant

First of all congratulations on your obvious commitment to exercise and self-care!

As you probably know aquatic therapy and exercise can be a wonderful choice for people with MS. The water, given it is an appropriate temperature, helps to keep your core temperature down during exercise, while the buoyancy of the water often allows for greater function and freedom of movement. Having a pool at home can help alleviate some of the common pitfalls of aquatic exercise including travel time to a pool, heavy chlorination of public pools, and finding a place to do standing exercise if the pool is being utilized for lap swimming.

Some aspects to consider in your decision to get a home pool would include;

1) Do you truly enjoy aquatic exercise? Some people start aquatic exercise because of its benefits, which are many. However, unless you truly enjoy pool exercise it may not be a wise investment.

2) Have you thought about safety considerations? Are you able to transfer safely into and out of a pool, or do you have someone to assist you? Will someone be home while you are in the pool if you need assistance?

3) Do you enjoy exercising alone? Some people prefer the camaraderie of an aquatic class setting, while others much prefer a quiet place to do their exercise alone.

4) Have you tried aquatic therapy? Even if you have done some pool exercise in the past, I would recommend consulting with an aquatic therapist before making this purchase. They can help you look at your specific needs and recommendations for exercise presently, as well as considering what might be appropriate for you in the future. They can also help you look at the different pool models which are available and recommend what features are important to maximize your exercise potential, as well as safety. The American Physical Therapy Association has an Aquatic Physical Therapy Section which has a locator for aquatic therapists. The link is: http://www.aquaticpt.org/findaclinic/index.cfm (I did notice that all resources are not listed on this site, but it is a good place to start. If they do not have a listing for someone in your area, I would ask a local physical therapist for a recommendation.)

I work in a physical therapy clinic where we have a Swim Ex exercise pool. We have had patients come in to use our pool on a regular basis for their exercise programs. Most have not used the current for swimming, but several have used it for resisted walking. You might want to consider this use when deciding whether or not to get a pool with current. In addition to allowing you to work on walking for functional distances, a current allows you to more easily include resisted walking or running for cardiovascular exercise in your routine.

Aquatic exercise is a wonderful way to feel refreshed and energized while gaining the cardiovascular, strength and flexibility benefits of exercise. I wish you the best with your decision on this potential investment in your health. Whether or not you decide to get the pool, be sure to keep moving.

Nurse Practitioner Response

Gail Hartley, MSN, NP, MSCN

Can Do MS Programs Consultant


Thank you for this important question.  In short, MS does not discriminate on age.  About 25% of people with MS are 65 and older, and they are certainly susceptible to symptoms and relapses.  Although it has been reported that only 5% of MS patients develop new symptoms after age 50, this is due, in large part, because older individuals mistakenly believe their symptoms are related to the typical changes with aging, and, therefore, are less likely to see an MS care provider. 

It is important not to jump to a conclusion and say that “an attack” is or is not related to MS, aging, or some other condition.  Check-in with your health care provider!  A careful assessment of your symptoms and appropriate medical tests are essential to making an accurate diagnosis and treatment plan. Then, focus on wellness. Take control of the things that you can do to stay healthy like eating a balanced diet, exercising regularly according to your ability, getting adequate sleep, and keeping a positive attitude.

Beware of what you read on the internet!  There are some false claims on the internet that MS can "run it's course."   According to Dr. Patrick Parcells, there is no research to suggest that “MS just does not progress beyond certain age ranges…some patients do continue to have slow, gradual progression.”   Here is a recent article from the Cleveland Clinic that you might finding interesting.  While it is possible that MS may “run its course,” damage to the central nervous system cannot be undone, so it is important to consult with your healthcare team as early as possible.  


For more information, read this article on aging with MS that I co-wrote with psychologist Terri Di Lorenzo, and watch this Can Do MS webinar.  This is also a good presentation by MS World and an article from Everyday Health.


Nurse Practitioner Response

Stephanie Buxhoeveden, MSCN, MSN, FNP-BC

Can Do MS Programs Consultant

A new shingles vaccine, Shingrix, is now available and is recommended over the older vaccine (Zostavax). Shingrix is a non-live vaccine, which is given in two doses. In general, it is recommended for anyone over the age of 50 regardless of whether you have had shingles in the past. 

Shingrix has not been studied in people with MS, but in general non-live vaccines are recommended and often encouraged. Your doctor may have more specific recommendations depending on your MS therapy, so always check with your neurology team first. 


Physical Therapist Response

Sue Kushner, MS, PT

Can Do Multiple Sclerosis Programs Consultant

Pain and stiffness are very common symptoms in MS.  To find effective solutions, the first step is diagnosing the underlying cause from a doctor or nurse.  Neuropathic pain, which is caused by damage to nerves, is much different than pain caused by mechanical problems, muscle imbalances, weakness, contractures, poor posture, orthopedic-based pain, etc. 

In both of the cases you are describing, intervention by a physical therapist will be essential.  They can recommend a stretching routine that will help the shortening of muscles and tendons that may be causing your pain.  The National Multiple Sclerosis Society offers a great brochure on stretching for people with MS.  Yoga has also been proven to be very helpful.  Here is a brochure and webinar on how yoga can be an ally in managing pain and other MS symptoms.  Both stretching and yoga can be adapted to any person’s mobility and activity-level. 

A therapist can also evaluate your movement for overcompensation.  Often, when a muscle or groups of muscles are very weak, the opposite (antagonist) muscles may take over, causing imbalances and pain.  Strengthening exercises may correct these balances by helping nerves to fire properly.  A physical or occupational therapist can also recommend bracing or other assistive devices, which may be beneficial for both issues.  Finally, pain is often relieved when overall health improves.  Regular, moderate exercise is essential to maintaining health and well-being for people with multiple sclerosis, and can cause a chain reaction to help your pain!

Specifically regarding your foot pain, this may be caused by cramping, spasticity, or improper gait.  Massaging the foot and applying pressure to trigger (or pressure) points may also assist. Foot exercises with a small ball or a small foam cylindrical roller cans provide some relief.  MS News Today and Everyday Health has some online at-home exercises.  As always, I’d recommend asking your healthcare team which exercises will be the safest and most beneficial for you.  Footwear is also essential in alleviating foot pain.  A therapist and podiatrist can help you evaluate and adapt your footwear and foot functioning.

The pain when lying down may also be due to spasticity or orthopedic postural problems. Stretching and implementing proper positioning of hips, knees, shoulders, feet, pillow placement, and mattress choices may help with this.

 

Understanding the causes of pain in MS is also important.  Here are some great resources for some background knowledge:

 

Pain and Depression in MS: Can Do Multiple Sclerosis Webinars

 

Understanding and Managing Your Spasticity: Can Do Multiple Sclerosis Webinars

 

Pain Management: Can Do Multiple Sclerosis Webinars

 

Pain: A Common and Complex Symptom: Can Do Multiple Sclerosis Library Article

 

Pain: National Multiple Sclerosis Society

 

Numbness of Tingling:  National Multiple Sclerosis Society

 

Spasticity: National Multiple Sclerosis Society

Psychologist Response

Rosalind Kalb, Ph.D

Can Do MS Programs Consultant

When other people (even your own children) are trying to tell you what's right for you to do, it's helpful to start by asking them what they're seeing that makes them think you need to make a change. What seems out of control to them? It may be that they see your physical limitations but don't appreciate the ways in which you have taken control of your situation to get the care you need. Or it may be that they're seeing things about your health, well-being or safety that concern them. Hearing their thoughts may bring up issues you hadn't thought about before.

However, if you think that the assistance (and company) you have three times a week is adequate for you, and you feel well cared for, physically safe, and comfortable, then it will be up to you to find ways to help your children understand that. Perhaps your husband could help with that conversation -- sharing his perspective on how you are managing and how the current arrangements are working for you both.

If you are concerned that this conversation might not go well or you feel you might need help to get it started, a family counselor with experience in chronic illness could be of help. Your healthcare provider or the National MS Society (800-344-4867) could help you find a counselor in your area.

Long-term care decisions are very personal and individual, so what works for you may be the same or very different from what would work for another person in a similar situation. The most important thing your children need to understand is that although you appreciate their care and concern, these decisions need to be left to you and your husband. If at some point, the 3x/week arrangement no longer works for you, then you and your husband can begin to think about what other options might work -- and the two of you can choose whether to include your children in those conversations.

There are great resources on the Can Do MS website on communicating with family members, including an article written by a fellow Programs Consultant, Peggy Crawford, PhD, entitled MS and the Family.

Nurse Practitioner Response

Stephanie Buxhoeveden, MSCN, MSN, FNP-BC

Can Do MS Programs Consultant

Excellent question!  Snoring is a common sign of sleep apnea, which, in turn, is very common in people with MS.  Unfortunately, problems with sleep quantity and quality are particularly common among people with MS, affecting about 50% of the population.   People with MS are also at greater risk for developing medical conditions such as sleep apnea.  This is due to primary causes, e.g. lesion scars can make it harder for your brain to control your breathing your sleep, as well as secondary causes, namely weight gain frequently seen in MS patients due to fatigue and lack of activity

A 2012 study by the American Academy of Neurology suggested there is “a predisposition for obstructive sleep apnea and accompanying central apneas among patients with MS, particularly among those with brainstem involvement.”   This predisposition to sleep apnea has both primary and secondary causes.  Primary causes are directly related to the MS disease activity.   For example, sleep can be affected when MS lesions occur in areas of the brain that are responsible for governing circadian rhythms (i.e., sleep-wake cycles within a 24-hour period) or the body’s essential hormonal and physiological processes, namely breathing.  Disrupted breathing is a common cause of sleep apnea.  According to the National MS Society, demyelination can also disrupt key neurotransmitters involved in sleep like hypocretin, dopamine, norepinephrine and melatonin, which can also result in sleep apnea. 

Sleep problems can also occur as a consequence of the many co-occurring (co-morbid) symptoms that go along with MS, including fatigue, bladder/bowel problems, and issues related to mood and/or anxiety. Lifestyle behaviors such as exercise and environmental factors such as bedroom characteristics (e.g., temperature, light, etc.) can also influence sleep.  Many medications present side affects that can also lead to sleep disturbances, including sleep apnea.

For more information on MS symptoms and medical side effects that can cause or worsen sleep dysfunction, please read this article that I wrote for Can Do MS, and brochure.  Also check out the Multiple Sclerosis Condition Center.  Finally, I highly suggest you consult with a doctor and sleep specialist to determine the cause and extent of your sleep apnea, as well as personalized management strategies.


Psychologist Response

Meghan Beier, Ph.D

Can Do MS Programs Consultant


Understanding how inflammation or neuronal damage caused by MS may cause mysophobia is a complex question, and I don’t think there is a straightforward answer.  To my knowledge, there are no studies that directly relate mysophobia to multiple sclerosis. That being said, MS might have a role. We know that, in general, anxiety disorders are more common in MS. Specific phobias, such as fear of germs, have been found in approximately 3% of persons with MS. There is also evidence that anxiety is more common in the presence of inflammatory activity. Therefore, it is possible that disease activity in MS may interact with the pathways that control our fight or flight response, causing the physical sensations of anxiety (e.g., heart racing, shallow breathing, clammy hands, queasy stomach).

 

At this point, our brain kicks in to interpret this physiologic response.  Our brain’s interpretation may vary from person to person based on their background, experience, and environment.  One person might attribute the response to a fear of needles, another worry about their family member, another fear of the future, and still another germs. The good news is that psychotherapy, or talk therapy, can help you learn about the way your brain interprets these responses, AND how to modify that interpretation.  We know that Cognitive Behavior Therapy is effective for treating anxiety disorders in people with and without MS. So, regardless of the underlying cause, it is possible to effectively address the symptoms.         

Psychologist Response

Gayle R. Lewis, Ph.D., MSCS

Can Do MS Programs Consultant

It’s so difficult to be given a diagnosis that erodes your sense of control over your body and life, and even more so when you feel that the lens through which your partners sees you has changed so drastically- to be made to feel “special” because he takes on daily chores that perhaps you no longer can do yourself vs. feeling “precious” because of the love and connection you have with and for each other.  Hard at this might be, the only way for him to understand this distinction – and to realize what you perceive to be his “focus of the day” – is to communicate with him openly, honestly, and specifically.

I’m not sure what it is that is making you feel like a burden or what is making it challenging for you to communicate your needs and desires.  Maybe you have tried communicating and “it hasn’t worked.” Maybe you are frightened to bring this topic up, as many people can be when they feel vulnerable. It is very important for you and your husband to set aside a dedicated time, where you both feel safe and undistracted, so you both can talk about your concerns –remember, your husband will also have very real and valid concerns that he may (or may not) want to share.  Be ready to listen and understand where he is coming from.  It’s vital that you be honest and that you allow your husband the time to be honest, as well.

Most importantly, this cannot be a one-off situation. Things won’t change by having just one conversation.  Repetition is needed, reminding is needed- but the reminding must be in ways that you both can tolerate and that doesn’t make you feel like you’re nagging or being a burden.  Your needs matter a great deal – make sure YOU know that.  It will come across in the way you let your husband know.

I hope this provides some comfort that you are not alone in your feelings – they are very common.  At the same time, change requires conscious adaptations in the ways you think and act.  All of this is much easier said than done. That’s why I highly recommend couples therapy with a psychologist/counselor experienced in MS.  I would also recommend that you and your husband find support groups to work through some of your issues.     

I also recommend continuing to learn as much as you can about communication and the emotional issues inherent with MS – for people living with the condition and support partners.  Can Do MS has some wonderful resources, including:

Webinars

It Takes Two to…Communicate

Together in MS

The Physical and Emotional Aspects of Intimacy in MS

 

Library Articles

Relationships & Communication

Support is a Two-Way Street

The Physical and Emotional Aspects of Intimacy in MS

Communication is a Two-Way Street



Physical Therapist Response

Sue Kushner, PT, MS 

Can Do MS Programs Consultant


An MS exacerbation, commonly referred to as "a flare up," commonly causes balance problems. Loss of balance can be caused directly from lesions in the areas of the brain responsible for movement and balance.  It is also a common byproduct of other MS symptoms, such as visual disturbances, loss of sensation, spasticity, and weakness.

Although balance in MS has been studied previously, little is known about if the senses that control balance and stability can be retrained or improved after lesion damage.  A recent study from the MS Trust supports the conclusion that YES, these senses CAN be retrained through rehabilitation.*  

The study further found balance rehabilitation tailored to specific sensory impairments resulted in significant improvements in stability and balance. Members of this group who were very unsteady and falling before rehabilitation, were also more steady and balanced when tested after the rehabilitation period and less likely to fall.The study results indicate that after rehabilitation, people with MS can recover from sensory impairments and improve their balance.

Balance (and coordination), like any other physical skill, are made up of a number of factors. These include strength, flexibility, vision, sensation, and vestibular wellness. Like other aspects of MS, depending on the CAUSE of your balance and coordination issues, there may be opportunities for improvement by addressing deficits in one or more of these factors. A person with MS should be thoroughly evaluated by a PT to identify where deficits may lie, and what are the main causes.

Strengthening or compensating for weak muscles may be a primary focus. For example, if you have foot drop, you may need to strengthen the hip flexors and quadriceps muscles to assist with clearing the foot when walking. (Assistive devices, braces, etc. may also help).

Limited range of motion (ROM) may also be a factor in balance deficits. For example, extremely tight calf muscles may not allow the heel to hit the floor with each step, which may prevent a proper base of support. A gait analysis by a PT, podiatrist or physiotherapist, can assess the way you walk to highlight biomechanical abnormalities. Addressing muscular imbalances or structural problems in your base of support may improve your balance.

Another factor that may affect is balance is medication. On the positive side, there are prescription medications that may assist in strengthening your base of support and improve balance. Conversely, some medications have side effects that may negatively impact your balance. As always, you should consult your health care team to evaluate the causes and effects of medication.

After the cause of the problem is correctly identified, improvements may be found in a variety of ways. Simple training exercises like walking sideways and backwards, walking in water, moving with a harness system, and experimenting with an assistive devices and/or brace can pay huge dividends. Strengthening exercises can support directly with weak muscles, as well as helping with compensatory strategies. I would also recommend looking into Swiss ball (or physioball) programs, yoga, and tai chi.

You should also be aware that your MS may create sclerotic plaques that can cause severe damage to neurotransmission and prevent your brain from telling body parts what to do. In this case, less can be done to improve balance deficits. However, your healthcare team can help you identify compensatory strategies that may assist with balance. When the problem is not totally due to neurotransmission, there is even greater room for improvement.

For more information on improving your balance, check out this article by fellow physical therapist and Can Do MS Programs Consultant Brian Hutchinson, PT, MSCS, as well as this article and webinar on reducing falls by Ann Mullinix, OTR/L & Kathy San Martino, PT, NCS, MSCS, CLT, ATP. The National MS Society also has great resources on balance.


* © Multiple Sclerosis Trust. “MS research update-Balance rehabilitation in MS: Can it improve stability? – 16 June 2014,” https://www.mstrust.org.uk/research/research-updates/update140616-balance-rehab-improve-stability.

Registered Dietitian Response

Baldwin Sanders, MS, RD, LDN

Can Do MS Programs Consultant

The gut microbiome is made up of trillions of tiny cells (including bacteria, viruses, and fungi) that populate our gut.  In addition to playing a critical role in our normal physiology, these bacteria are extremely important to gastrointestinal (GI) health, as well as the establishment and maintenance of immune balance.  However, gut dysbiosis (too much "bad" bacteria) has been linked to a number of diseases and conditions, while removing certain bacteria may help in treatment (including in pancreatic cancer, as reported in a March 2018 study by NYU School of Medicine). Understanding the appropriate balance of “good” bacteria has been the focus of much ongoing research for a number of years.   

In multiple sclerosis, two new studies were published in 2017 linking gut microbiome to MS.  As Stat News reported, "Gut germs that were unusually abundant in people with MS changed white blood cells in a way that made them more likely to attack the body’s own cells, including neurons...the other experiment found that gut germs from people with MS made mice more likely to develop the disease than did gut germs from their identical but healthy twins."  Read the entire summary here.  

At the same time, researchers pinpointed certain species that have protective properties in the immune system, which also are seen in lower numbers in the MS population.  Researchers are excited that these studies could lead to new understandings of the causes, development, and progression of MS, as well as ways lower-risk treatment options through modulating the gut microbiome   

At this point, strategies to manipulate the gut microbiota in people with MS are not implicated. Prebiotics and probiotics are very popular and have potential to promote GI health, but not in the symptomatic treatment of MS. As always, nutritionists continue to recommend a high fiber diet and adequate fluids for GI health.

For more information, please read this summary from the National MS Society.

Psychologist Response

Roz Kalb, Ph.D.

Can Do MS Senior Programs Consultant

 A study published in 2013 reported that a parent of a child with MS has a 1-in-67 likelihood of developing MS in the parent’s lifetime (compared to a 1-in-330 lifetime risk in the general population).  According to the Multiple Sclerosis Trust, this augmented ratio is due to the 110 genes that researchers have identified as “increasing the risk of someone developing MS to a small degree.”  It makes sense that first-degrees relative may share some of these genes.  Presumably, these genes would be passed down hereditarily, but there is no certainly of if or when these genes will lead to the development of MS in either generation.  In fact, there is no certainly that family genetics makes a person any more susceptible- many people diagnosed with MS have no family history of the condition.  Even with similar genes, the MS Trust calculated that genetics only contribute about half (54%) of the risk factors, with environmental factors factoring into the other 46%.  That being said, with this increased genetic risk, you should consult a healthcare professional experienced in MS. 


Nurse Practitioner Response

Kathleen Healey, NP, Ph.D.

Can Do MS Programs Consultant

One in five men in the general population experience erectile dysfunction (ED).  An estimated 91% of men with MS are affected.  ED is a common symptom in MS because it has primary, secondary, and tertiary causes.  Primary sexual dysfunction is the result of damage to the central nervous system caused by MS.  Because demyelination slows the impulses sent from the brain to the body, messages can easily be disrupted to sexual organs.  In addition, erectile dysfunction is closely linked to fatigue and depression- two very common symptoms with MS.  Mobility and spasticity issues related to MS can also result in the inability to maintain certain positions conducive to getting and keeping an erection.  Finally, people with MS often experience bladder and bowel issues, which can also contribute to sexual dysfunctions.  On top of these primary and secondary causes, there are tertiary considerations, namely self-esteem issues and lack of energy.  Erectile dysfunction is also associated with aging, vascular disease, and reactions to certain medications.  

While understanding the causes of ED can certainly be confusing and frustrating, there are many effective treatment options available.  There are a number of options that may be available, including:

• Oral medications such as sildenafil citrate (Viagra), vardenafil (Levitra),tadalafil (Cialis)

• Intracavernous injection therapy (alprostadil (Prostin VR), papaverine)
• Intraurethral suppositories (alprostadil)

• Vacuum erection device

• Penile prostheses

• Body mapping exercises

• There is growing research that kegel exercises specifically aimed at strengthening the bulbocavernosus muscle (a nurse or physical therapist can help you develop an exercise routine)

For the secondary and tertitiary issues I mentioned, counseling and therapy have proven to be effective.  

My last piece of advice is to be proactive with your entire healthcare team, particularly your neurologist and nurse practitioner.  The topic of sexuality is often not addressed thoroughly in a regular office visit, so you have to be your best self-advocate and bring sexual questions and concerns to the forefront.  Remember that sexual health is an important of your overall health and quality of life.

For more general information on sexual symptoms in MS, please watch this webinar that I I co-presented with Dr. Linda Mona.  The National MS Society and Multiple Sclerosis Association of America also have great resources on sexual symptoms.



Neurologist Response

Ben Thrower, MD

Can Do MS Programs Consultant

Mannitol is a naturally-occurring sugar alcohol.  In addition to being a sweetener in many foods, mannitol offers a number of health benefits, including regulating swelling and hypertension in the brain.  There have been several studies suggesting that mannitol may be effective in treating the demyelinating effects of exacerbating multiple sclerosis.  Many MS medications contain mannitol, including Copaxone and its generic forms.  On its FDA contraindications, Copaxone warns against “known hypersensitivity" to mannitol.  However, before switching medications, I would suggest asking your allergist to determine whether you are specifically allergic to mannitol or another natural or artificial sweetener.  If you are tolerating your DMT well, one could argue that you may not have a true allergy to mannitol.  You and your doctor would then have to weigh the potential benefits and risks of staying on your current medication.

Psychologist Response

Roz Kalb, Ph.D.

Can Do MS Programs Consultant

All of the moods you are expressing – anger, irritability, emotional overwhelm- and the unexplainable and unstable swings in these moods are common, yet underdiagnosed and undertreated, symptoms of MS. 

In MS, your immune system attacks your myelin, the protective covering that coats the nerves of your central nervous system (CNS), creating lesions. If lesions form in the areas of the brain or nerve circuits that regulate mood, this could explain these new expressions.  If you have changed your medication regimen, this could also trigger mood swings.

Besides demyelination and reactions to medication, there are inherent challenges related to both aging and MS that can contribute to mood swings.  For example, depression, which is a common cause of mood swings, is closely associated with the normal process of aging for a myriad of reasons, including increased dependency, loss of loved ones, and grieving associated with health conditions, which, in general, become more prevalent and impactful as we age.

For most people with a chronic illness like MS, as well as their support partners, healthy coping over changes and losses is a common challenge.  Beginning with diagnosis, and again with changes in function or everyday activities, people need to grieve over losses they experience before they can move forward with their lives. Normal grieving ebbs and flows with these changes. Depression, on the other hand, is both a symptom of MS and a reaction to the challenges it poses. More than 50% of people with MS will experience a major depression. For somewhat different reasons, support partners are also at risk for depression. Regardless of the cause, depression deserves the attention of your healthcare team. Accurate diagnosis and adequate treatment – ideally consisting of counseling, medication, and exercise – are important.

Anxiety is as common in MS as depression, but generally receives less attention. People with MS and their support partners experience anxiety over the unpredictable impact of MS on their day-to-day lives and the future. Left untreated, anxiety can interfere with planning, problem-solving, and quality of life. Counseling – with medication, if needed – is an effective treatment strategy.

I would highly recommend for you AND your spouse to speak with your healthcare team, especially a mental health professional, who can work together to manage these mood swings.  For more information on mood changes in MS, please read this article and view this webinar that I co-presented with fellow Can Do MS Programs Consultant, Courtney Macksoud.    

Nurse Practitioner Response

Gail Hartley, MSN, NP, MSCN

Can Do MS Programs Consultant

While approximately 25% of people with MS are 65 and older, less than 5% develop symptoms that late.  Most people are diagnosed between the ages of 20 and 50; however, the National MS Society notes an increasing occurrence in “significantly older adults.”   Everyday Health published a great article about a person who did not experience any MS symptoms until his 60s and not diagnosed until 70s.  They also point out that diagnosing “late-onset MS is difficult because symptoms can mimic those of other neurological conditions that become more common with age.”  Many of these other conditions have MS-like symptoms that can be confusing when trying to diagnose, including blood vessel disease that can create white matter damage similar to MS on an MRI brain scan. Beyond specific conditions, MS is difficult to diagnose because symptoms are similar to the typical changes found in most everyone this age, including increased weakness, pain, cognitive difficulties, mobility issues, and fatigue, which is one of the most common “red flags” for MS, but is also very common with aging. 

I would recommend consulting with your healthcare team immediately to determine whether your symptoms are related to aging, MS, or another medical condition.  I would then focus on a variety of strategies for healthy aging, which would help with MS progression, but just as importantly, will prevent co-morbidities and improve your overall quality of life.  General strategies for healthy aging include: eating a healthy diet to reduce risk of diabetes and osteoporosis and maintain healthy cholesterol levels; exercising to reduce risk of heart disease and high blood pressure and maintaining strength and mobility; paying attention to mental health and depression; and getting adequate sleep.

If your diagnosis is, in fact, MS, it’s important to remember that many older individuals with MS report that their quality of life is as good as those of younger individuals with MS. Persons with late-onset MS tend to be more receptive to using assistive devices, pace themselves, and accept support from others to enhance mobility and socialization. Many also indicate that quality of life is improved by reprioritizing what is important, spending more time with family and friends, and giving back to others in some way.

For more information, on aging with multiple sclerosis, please view this webinar I presented with Dr. Terry DiLorenzo.


Nurse Practitioner Response

Gail Hartley, MSN, NP, MSCN 

Can Do MS Programs Consultant


Relapses, also known as exacerbations, occur unpredictably in MS.  It can be difficult to recognize whether you are having a relapse (which is generally defined as new or worsening MS symptoms that last for more than 24 hours that are not associated with any other illness or infection), and even more difficult to determine why they are happening.  According to the National MS Society, “there is no evidence that the stress of surgery will bring on an exacerbation of MS.  Generally, in the absence of complications, people with MS who undergo surgery do not find that it impacts their neurological status.”  There is also little evidence to suggest surgical anesthesia creates any more risk for persons with MS than in the general population. A recent study in Multiple Sclerosis also concluded that “surgery has not been found to be associated with exacerbations.”

The International Anesthesia Research Society agrees, although less definitively: “It has been speculated that general anesthesia and surgery may increase aggravation of MS.  At present, there is no general consensus on this matter, and patients should therefore be informed of the potential for aggravated symptoms in the postoperative period.”  These potentials include impaired autonomic functions, higher sensitivity to physical and emotional stress, and increased body temperature, all of which are common following surgery and can lead to disease exacerbations.  Therefore, attention to physical and neurological therapy, emotional health, and temperature management are crucial following surgery.  

With more advanced MS, anesthesia can aggravate certain muscle, neurological, and respiratory weaknesses, as well as increasing the likelihood for infection and fever- all of which can also lead to a greater risk of relapses. It is crucial that you consult with your healthcare team members, including your neurologist and physical therapist, about your particular circumstances.

While we cannot control when or how a relapse occurs, we can create a plan to rebound.  In addition to talking with your healthcare team, please read this article and view this webinar, “Recognizing and Rebounding from an MS Relapse,” that I presented with fellow Can Do MS Programs Consultant, Sue Kushner.

Psychologist Response

Dr. Abbey Hughes, M.A., Ph.D. 

Can Do MS Programs Consultant


Tremors, or uncontrolled movement/shaking, are common among people with MS and can significantly impact the quality of your sleep and your overall health. Tremors can occur in a variety of situations: during physical movement (e.g., when you are trying to reach for something like a pen or door handle); when you are supporting your body against gravity (e.g., when you are sitting or holding your arm stretched out); and during rest (e.g., while lying in bed). In addition to tremors, there are also two sleep-related movement disorders that are common in people with MS: restless legs syndrome (RLS) and periodic limb movement disorder (PLMD). In RLS, you may find the irresistible urge to move your legs, and this uncomfortable sensation tends to occur more in the evening hours and when you are trying to fall asleep. In PLMD, these movements occur during sleep, are uncontrollable, and the person is often unaware that these movements are happening.

For people with MS, there may be several causes of tremors or sleep-related movements. For example, lesions can cause damage to specific brain areas that control movement, resulting in tremors or uncontrolled movements. Second, some medications or combinations of medications can cause shakiness or tremor. It is important to make sure your neurologist or health care provider has a list of all of your current medications and dosages to rule out any medication side effects. Finally, there are some behaviors that can worsen tremors, even if they don't cause directly cause the tremor. For example, excessive use of caffeine, alcohol, or nicotine/tobacco, lack of sleep, and even feeling highly stressed or anxious can worsen tremors.

As you can see, tremors and other sleep-related movements can be very complex. A neurologist who is trained in MS and/or sleep medicine can help determine what type of movements you are having, their cause, and potential treatments. This expert would be able to perform a physical exam and a sleep study to determine when the movements are occurring. As a psychologist, I cannot diagnose or determine the exact cause of your movements, but I can help patients learn relaxation and other strategies to cope with the discomfort that often comes with tremors. Reducing caffeine, nicotine, and alcohol use is often a good place to start, not only for tremors but for all of the other health benefits as well.

To find a sleep specialist near you, visit http://www.sleepeducation.org/find-a-facility and type in your zipcode.

For more information on sleep issues in MS, please read this article and watch this webinar I co-presented with fellow Can Do MS Programs Consultant Stephanie Buxhoeveden, MSCN, MSN, FNP-BC.  Also, the National Sleep Foundation has some great resources on strategies to improve your sleep.

Physical Therapist Response

Mandy Rohrig, PT, DPT

Can Do MS Programs Consultant Coordinator

Cramps or spasms below the knee most commonly occur in the area of the calf muscle. I would encourage you to look for patterns in your activity to determine if that may be a contributing factor. Excessive walking, stair navigation, or exercise can trigger spasms later in the day and night.....or, maybe it is happening on days when you participate in too little activity. If you monitor your activity and there is no particular pattern, then I would talk with your doctor, nurse practitioner, or Physician’s Assistant to determine if there is a symptom, medication reaction, or even dehydration that may be contributing.  A registered dietitian may also be able to find a nutritional deficit in your diet that could be leading to these cramps.

Furthermore, as a physical therapist, I have clients who experience spasms and cramps at night who find that a short stretching routine prior to bed can be helpful. A physical therapist can help you identify which muscle groups are tight, contributing to spams, and may benefit from more attention prior to bed. In the case of calf muscle spasms, a calf stretch in bed or prior to bed may be helpful for some. A physical therapist can provide a variety of positions to accomplish a calf stretch that would be most beneficial.

In MS, cramps can be caused by spasticity, which occurs when lesions damage nerve impulses that control muscle movement.  There are a variety of exercises, medications, and medical interventions that can be used to treat spasticity, which, in turn, could help your cramps.  I would recommend speaking with your healthcare team about this, as well.  For more information, Can Do MS has published articles and webinars on spasticity management techniques.  

I wish you relief from your cramps and a year of health, wellness, and happiness! 


Dietitian Response

Mona Bostick, RDN, CSO, LDN

Can Do MS Programs Consultant 


I would first determine if the knee pain is being caused by your muscles or bones (tibia, femur, or patella pain is more common than muscles around the knee).  If the pain is indeed being caused by muscle cramps, certain mineral deficiencies could be contributing factors.  I would look into deficiencies in three key minerals:  potassium, magnesium, and calcium.  Increasing food sources of these nutrients regularly may help to correct a deficiency. Here is a link to food sources of the mentioned nutrients (plus others, so scrolling will be required). I strongly discourage taking a mineral supplement without first speaking with their doctor as these supplements may interfere with medications.

Psychologist & Physical Therapist Response

Peggy Crawford, Ph.D & Sue Kushner, MS, PT

Can Do MS Programs Consultants


Congratulations for not only recognizing the importance of stress management, relaxation,  and quality sleep- but for understanding that these skills and concepts, which are critical for your overall health and quality of life, cannot be learned or incorporated into your lifestyle plan alone.   There are wonderful resources to guide, encourage, and counsel you.

Effective stress management is about changing your relationship to your problems, your stress, your body, and your mind. A primary goal in stress reduction is having access to a variety of tools- as well as the skills and mindset to utilize them effectively. Picture yourself wearing a tool belt. Do you want 6 hammers in this belt, or do you want 6 different tools so you can choose the tool that best fits the situation, while having several others as backup? To develop these adaptable skills, practice with different tools in different stressful situations… and try new ones even if you feel uncomfortable. Remember that giving yourself a choice is stress-reducing in and of itself, and following through with your plan to practice will add to your self-confidence and self-efficacy.

There are many effective stress management strategies, including regular physical exercise, organizational skills, SMART goals (Specific, Measurable, Attainable, Relevant, Time-based), relaxation exercises (deep breathing, progressive muscle relaxation, body scan, guided imagery, etc.), as well as many forms of mindfulness.

Mindfulness makes use of three tools that are available to you 24/7: your mind, your body, and your breath. By focusing your attention on what you’re experiencing from moment to moment without judging your thoughts, feelings, bodily sensations, and environment, mindfulness will help your mind “wander off,” and, in turn, will guide your attention back to your focus (e.g., your body or your breath) in a kind and gentle manner, devoid of criticism or judgement. Many people practice a combination of formal and informal mindfulness. Like many things in life, variety inherently reaps benefits.

Formal mindfulness involves setting aside a specific amount of time every day to sit or lie quietly, while focusing on breathing, another physical sensation, an object, a word, or an image. This practice is often referred to as meditation. Informal mindfulness comes in many forms that share a common focus: paying attention without judgement to everyday routine activities, such as breathing, brushing your teeth, bathing, answering the phone, stopping at a red light, or eating. It is also recommended that activities be done slowly, one task at a time. Multitasking really isn’t what it’s cracked up to be. Research and experience has shown that mindfulness is particularly helpful to people experiencing a chronic illness or disability. In the case of MS, mindfulness has been associated with improvements in pain management, fatigue, cognitive functioning (e.g., attention, concentration, and information processing), and mood. Practice is the backbone of learning how to make effective use of these stress-reducing tools and skills. Keep in mind that few (if any) of these require special equipment, club membership, or prescription.

Stress in our lives won’t go away and can actually be beneficial to some degree. Everyone knows that at its most primitive, the “flight or fight” response of stress has helped people survive since the dawn of time. Running away from daily stressors is not an option. Implementing strategies to stay and “fight”- or at least deal with- our stressors are necessary for managing stress and turning it into something productive.

However, you have to make sure that you are not adding to the stress by trying to fight it! We all know that MS exaggerates stress and stress exaggerates MS. This can lead to a vicious cycle that needs to be broken, or at least managed, with the mind AND the body.

It is well-proven that exercise plays a key role in the mind-body connection and can be very effective in combatting stress. Because everyone’s minds and bodies are different, developing an individualized program with exercises and activities that work best for you is essential. Listening to your body is essential. Setting realistic goals is essential.

 The goal is to determine what works best for YOU. Because multiple sclerosis is unique to each person, your strategies and regimen must be individually tailored. This may include exercising with an MS group by yourself or with your support partner. It may include time in a gym or in the quiet, convenient space of your home. Aquatic exercises or classes may work for one person, while another chooses to walk or bike outside (with modifications as needed).

Problem solving, combined with flexibility and the ability to “listen to your body,” will help minimize stress and maximize results. The mind and body can be a winning team in the management of stress related to MS! 

 

Here are some resources you may want to explore:

Mind and Body: A Winning Team in Stress Management. Can Do MS webinar

Sleep and MS.  Can Do MS Webinar and Article

David Engstrom, Ph.D. Untying the Knots: Basic Training in Stress Management (4 cassette tapes)

Stockholm School of Economics.  Podcast series about mindfulness.

Jon Kabat-Zinn: Full Catastrophy Living: Using the Wisdom of Your Body and Mind to Face Stress, Pain and Illness (1990 and 2013).

Three series of practice CDs, Guided Mindfulness Medication available at www.mindfulnesscds.com.

Belleruth Naparstek: CDs and tapes on guided imagery for multiple conditions and topics including stress sleep, pain, depression and specifically MS: A Meditation To Help You with MS  available from Health Journeys.

 The National MS Society also has some great resources on sleep, stress management, mindfulness, and relaxation.

 

Of course, the best resources for your individual circumstances will come from a professional therapist or counselor.  I recommend consulting with your healthcare team to help you "let go" and manage your stress.

Community Liaison Community

Lisa Giogetti

Social Security Disability Help


Social Security Disability Insurance (SSDI)provides financial assistance to disabled workers and their families. You can qualify for SSDI if the Social Security Administration (SSA) deems you medically disabled and finds that you have worked for long enough and have paid into the Social Security tax pool, the amount depends on your age, from where these benefits are drawn.

The first step is to determine if you qualify.  An SSDI attorney or community liaison (including MS Society Navigator) can help you with this determination, which can be, unfortunately, frustratingly complex.  The basis for qualifying is the SSA's Blue Book, which has medical conditions listings that typically must be met.  These conditions are outlined in  http://www.disability-benefits-help.org/disabling-conditions/multiple-sclerosis-and-social-security-disability

The listing for MS is found under the neurological disorders section of the adult Blue Book listings, 11.09 Multiple Sclerosis. In order to meet the listing, you must show:

  • Limb dysfunction causing walking difficulties
  • Vision decrease despite corrective lenses
  • Nervous system issues causing fatigue
  • Mental disorders, including mood swings or memory loss.


If you believe you meet these qualifications, the next step to complete an application, which can be found at https://www.google.com/url?sa=....  

You will need to gather any medical information that may help your claim. A list of daily activities will be invaluable because MS can affect many different aspects of life. Consider asking for statements from doctors and include records of hospitalizations, any treatments prescribed, and in the case of a child, statements from teachers and other professionals who regularly see your child and can attest to the effects of their condition. Be as thorough and detailed as possible in order to give yourself the best chance of qualifying. You will also need the financial and employment information required by both the SSDI and SSI programs. http://www.disability-benefits-help.org/content/application-process

When you are ready to begin the application, take the following steps:

  • Gather all necessary medical and non-medical documentation.
  • Begin filling out the application forms online or in person with an SSA representative. Applications for children can only be processed in person.
  • Wait. The wait time for a decision can be anywhere from a month to over a year.
  • If you receive a denial, know that you may appeal that decision within 60 days of receiving it. Many initial applications are denied by the SSA for being incomplete or incorrect. The appeals process is how most folks are finally approved.
  • If you have difficulties with any of the steps or are unclear of the process, consider hiring a disability advocate. These specialists are well versed in the application process and will help you prepare and present your claim to the SSA examiners.
  • A disability advocate can be particularly helpful when it comes to receiving back pay. As the application process and decision-making process also takes time, you can be awarded back pay from the time that you became disabled. Note: this only applies to SSDI applicants.

The application process for Social Security Disability benefits can be lengthy, but entirely manageable if you stay organized and consider hiring an advocate to represent you. They can help you structure your application, so that you stand a better chance of receiving the benefits. With or without representation, receiving these benefits will help you afford treatment for MS and lead a financially stable life.

For more background information on SSDI and MS, please utilize these resources:

Disability & Social Security Benefits in MS - Can Do MS Article

The New MS Listing for Social Security - Can Do MS Webinar

Knowing How To Navigate Leaving the Workforce - Can Do MS Webinar

Applying for Social Security Disability Benefits - National MS Society Guidebook



Occupational Therapist Response

Stephanie Nolan, OTR/L

Can Do MS Programs Consultant


Hello CAN DO MS readers! Thank you for this great question about life-saving equipment for those with MS in the case of emergencies. While many people think "this won't happen to me," emergencies are sudden and unavoidable.  Prevention and preparation are key to survival and success. Since reading long paragraphs can be challenging visually (and sometimes cognitively) for those with MS, I am going to make bullets for you to use as a ‘checklist’ in preparing your home for safety.

 1.    Create an ‘Emergency Info Packet’ and keep it out in the open with something written on it like "in case of emergency, please read."  This can be easy for you to grab and go in an emergency situation or for someone to easily find in case you are incapacitated. This should be in a waterproof container and include the following:   

a.    Your diagnosis (with current symptoms, e.g.  explain speech difficulties so that if someone finds you struggling to talk they don't assume this is a new symptom and incorrectly diagnose you with something else)

b.    Current medications

c.    Allergies

d.    Care instructions

e.    Past medical history (surgeries, diagnosis, injuries, precautions e.g. thickened liquids)

f.     Emergency contacts

g.    Information about pets & service animals

h.    Primary care doctors or specialists (ex neurologists)

i.     Copies of insurance cards


2.    HAVE A PLAN! Depending on where you live you might need to plan for something like a hurricane, earthquake, heat waves or maybe even forest fires.

  1.            Have a few people for emergency contacts that know your plan.

a.            Discuss your limitations with people in your neighborhood or apartment complex and practice evaluations with those willing to help.

b.            Keep the plan written down and organized with phone numbers and addresses.

c.            Have an emergency ‘meetup’ place in different locations depending on the direction of the current threat. (e.g. if a fire comes from the north, than you might go south to your aunt's house; if a hurricane comes from the south, you might go to your sisters house in the north. Also, if possible, have some extra medical equipment stored at that home like walkers, shower chairs, etc.).

d.            Keep the written plan in a place that is easy to get to (e.g. hang a copy on your refrigerator or put a copy into your go bag).

e.            Towns or neighborhoods often have an emergency preparedness program for people with disabilities- Contact your local emergency management agency to see if they keep a list of people with disabilities to know who to assist in the case of an emergency or disaster.


3.    Signs: post a sign in your window that indicates someone with a disability lives in the home and needs extra assistance in the case of emergency.


4.    Have an ‘Emergency Go Bag’ (maybe even 2- one in the home and one in the car) that includes the following:   

 a.            At least 7 days worth of medications and copies of prescriptions

b.            Some form of payment (cash, checks, extra debit/credit cards or prepaid gift cards)

c.            Pen and paper

d.            Physical copies of local maps

e.            Wheelchair equipment (e.g. patches for tires, correct allen wrenches for adjustments etc.)

f.             Food and water (for you and any service animals)

g.            Power packs, chargers or batteries for medical equipment you need to bring (CPAP, wheelchair batteries, hearing aid batteries, etc)

h.            Flashlights, whistles and batteries

i.              First aid kit

j.              Catheters and gloves

k.            Cell phone chargers, extra batteries or power packs

l.              Emergency blankets, instant ice packs to prevent overheating and ponchos

m.           Contacts or extra glasses

n.            Emergency flairs

o.            Another copy of your ‘Emergency Info Packet’


6.    Install the FEMA app or dial in to NOAA weather radio to be up-to-date on disasters or potential threats. (NOAA also has options for deaf and hard of hearing).


7.    Sign up for Smart911- if you call 911, this program will provide the listener with important information about you in the case that you can't speak or someone is calling for you but doesn't know your medical info. It also allows responders to provide the best possible care upon arrival.


8.  Wear medical alert tags/bracelets (often home security systems will offer these).


9.  Set up home systems with voice activated devices to be able to quickly call 911 in an emergency (ex. Echo Dot, Alexa, Google Home etc.).  If you have a watch that is linked to your phone, this can be helpful as well


10.  For those who use a power chair, have a lightweight manual option available for emergency evacuations.


11.  Other supplies that may come in handy in the home but may not fit your emergency bag: 

a.            Stair evacuation device (some slide down, some chairs ‘click’ down step by step and some are sling like for carrying a person)

b.            Fire blankets and fire extinguishers

c.            Fire evacuation masks (Evaculife makes products specifically for people with disabilities).  

d.            You should have fire blankets in your house (preferably near the kitchen where most house fires start) in order to extinguish fires.  Fire blankets cut off oxygen supply, which is one of three elements on which a fire thrives.  For this reason, however, they are not intended to cover your face as this will cut off your oxygen supply, as well.  


12.  Knowledge is the greatest resource!  Take some time before an emergency happens to know what information and services may be available:

Smart911: https://www.smart911.com/ FEMA : https://www.fema.gov/office-disability-integration-and-coordination

Disasterassistance.gov : https://www.disasterassistance.gov/information/disabilities-access-and-functional-needs

Red Cross Disaster preparedness for people with disabilities (checklist included): http://www.disastersrus.org/MyDisasters/disability/disability.pdf

Emergency Preparedness Kit for People with Disabilities (Oregon specific called  ‘ReadyNow’ but great resource for all people): http://www.ohsu.edu/xd/outreach/occyshn/upload/ReadyNowToolkit.pdf

Ready.gov: https://www.ready.gov/individuals-access-functional-needs

Build a Kit Video: https://www.youtube.com/watch?v=kJuDXorO9_g

NOAA for hearing users with loss: http://www.nws.noaa.gov/nwr/info/shhh.html


Also, the Pennsylvania Department of Health created a great chart on emergency preparedness for people with physical and mobility disabilities. http://www.health.pa.gov/My%20...


Finally, the National MS Society has some great resources on emergencies, disasters, and fire responses, including this website: https://www.nationalmssociety.....  I would also recommend reaching out to a local MS Navigator to discuss local resources that may be available to you by calling 1-800-FIGHT-MS.

I hope these resources are helpful.  Be well and be safe!

Psychologist Response

Rosalind Kalb, Ph.D.

Can Do MS Programs Consultant Coordinator

Depression is one of the most common symptoms of MS and also one of the most treatable. Although it can range from mild and episodic to severe and chronic, depression frequently responds well to talk therapy (particularly cognitive behavior therapy) and antidepressant medication. Exercise is also known to enhance mood.

Depression is known to be more common in people with MS (as well as other illnesses that have a similar inflammatory component, e.g. rheumatoid arthritis) than in the general population or people with most other chronic illnesses. Researchers have concluded that depression in people with MS may have multiple causes, including the MS disease process itself, a reaction to the challenges and losses MS can cause, and a family history or genetic predisposition to depressive illness.

Regardless of the cause, however, the treatment recommendations are the same. It is important to be evaluated by a mental health professional who can help you determine the best course of treatment to get you feeling like yourself again. If an antidepressant medication is recommended, keep in mind that it can take up to 4-6 weeks for the medication to provide optimal benefit, and it may take time to find the right dosage for you with the fewest side effects. Your neurologist may be able to refer you to a mental health professional who is experienced in MS. You can also contact the National MS Society (800-344-4867) for a referral.

For more information, please watch the Can Do MS webinar Discover The Invisible: Pain and Depression in MS and Taking Charge of Depression and Mood Changes, for which I also co-authored an article on this topic.  The National MS Society also has some great resources that you may find helpful.

Registered Dietitian Response

Mona Bostick, RDN, CSO, LDN

Can Do MS Programs Consultant

While many diets are promoted to benefit people with MS, at this point,  NO DIET has been proven to alter the course of multiple sclerosis.  However, through diet choices, you can find positive outcomes to intervene specific problems you may be facing and, most importantly, greatly affect your overall health and well-being. I suggest a balanced diet that frequently includes these items:

  • A variety of colorful vegetables and fruits
  • Whole grains
  • Beans
  • Nuts and seeds
  • Lean proteins
  • Healthy fats (fatty fish, olive oil or avocados)

I also suggest seeking the guidance of a registered dietitian (RD or RDN) who understands the challenges of MS to help you make manageable and sustainable changes to your diet.  For more information on diet and MS, please watch this Can Do MS webinar and read this article by renowned neurologist Pavan Bhargava.

Nurse Practitioner Response

Gail Hartley, MSN, NP, MSCN

Can Do MS Programs Consultant

Sneezing is an uncommon symptom in a neurological disease of any kind, including multiple sclerosis. Further, the actual mechanisms that cause sneezing are not well understood, but may include irritation of the trigeminal nerve endings that supply the nasal mucosa.  Most of the time, chronic sneezing is related to inflammation of the nasal passages. Irritation can be caused by viruses or bacteria.  Allergic triggers can include certain food, seasonal airborne pollens, dust, animal dander and weather changes.  Certain medications, may also cause sneezing.  Regardless of the cause, persistent sneezing should be thoroughly evaluated so that appropriate recommendations can be made.

Nurse Practitioner Response

Gail Hartley, MSN, NP, MSCN

Can Do MS Programs Consultant


A bowel retraining program can be very helpful for persons who have chronic constipation and irregular bowel movements, as well as for persons who have frequent loss of bowel control.  Retraining your bowel involves trying to go to the bathroom at the same time every day to train your body to have regular and predictable bowel movements. It may take several weeks to establish a new routine, but it is possible with consistent effort and the help of a nurse and other healthcare team members. 

Before starting a bowel program, discuss your current symptoms (ie constipation, incontinence) with your HCP.  Review your current dietary habits--are you getting enough fiber in your diet? Are you drinking enough fluids? Are you getting any exercise?  Are there medications that could be contributing to your symptoms?

The National MS Society has some great resources on managing bowel issues and can connect you with local experts who can help develop a retraining program.  I'd also recommend this checklist of ways to regulate your system, as well as this article and webinar on bowel and bladder issues, all created by fellow Can Do MS Program Consultants.  You can also access materials that we use at the 4-day CAN DO Program during the bowel and bladder workshops:

Bladder Instructions 2017

Bladder Slides 2017

I hope you find these resources helpful and you can take steps to improve your bowel timing and overall quality of life.

Occupational Therapist Response

Juliann Hanson-Zlatev, OTR/L

Can Do MS Programs Consultant


Around 60-80% of individuals living with M.S. experience heat intolerance.  A small rise in your body temperature -- as little as one quarter of a degree -- can make it harder for your nerves to send electrical impulses.  This, compounded with the other symptoms of MS, can make you feel overheated, tired, and weak.  Cooling vests can provide relief by absorbing your body's heat and sweat while cooling your chest and stomach.  Some vests can be quite expensive, so you are smart to do homework first.  Your MS doctor, nurse and rehab professionals can make recommendations based on your specific needs. 

Can Do MS has worked with Polar Products.  They have a wide variety of vests and a good understanding of MS heat intolerance.  Their website is http://www.polarproducts.com/p...

As far as information on products and strategies, Active MSers, the Department of Veterans Affairs MS Center of Excellence, and the National MS Society has some good resources on keeping cool.  The Society's Navigator Program can also connect you to local resources by calling 1-800-FIGHT MS.  I'd also recommend this webinar and article by fellow Can Do MS Programs Consultant Beth Bullard. The Multiple Sclerosis Association of America's Cooling Distribution Program and the Multiple Sclerosis Foundation's Cooling Program provide financial assistance for people with MS to access cooling products. 

Occupational Therapist Response

Stephanie Nolan, OTR/L

Can Do MS Programs Consultant


First, I congratulate you on your initiative to modify your kitchen to make life easier for you and your family.  Can Do MS believes strongly that the answer to a disability is mobility.  You can stay active in the kitchen, while also being mindful of your fatigue and, most importantly, your safety.  The first resource I would recommend is the National MS Society's Navigators, who are available at 1-800-FIGHT-MS.  They can provide local resources to trusted contractors who specialize in kitchen modifications for your specific needs and abilities, as well as financial assistance opportunities to help make the modifications affordable.  They can also connect you to others living with MS to share tips and suggestions. 

The Society's website, www.nationalmssociety.org, has an extensive library of resources, including this brochure on adapting your home environment. Can Do MS can also provide ideas through our online resources, including this webinar on "unlocking barriers in your home" that I facilitated with physical therapist Mandy Rohrig.  You can also view the slides of a presentation I co-presented with dietitian Baldwin Sanders on nutrition and kitchen adaptations:  1 Eating Well Eating Easy Take Charge Norfolk2016.  Finally, MoveOverMS and AboveMS have some great ideas to make your kitchen more "MS Friendly."  

Nurse Practitioner Response

Gail Hartley, MSN, NP, MSCN

Can Do MS Programs Consultant


Ultimately, all vaccinations present risks.  However, for most people with MS, the Pneumococcal vaccine is safe.  According to the Immunization Action Coalition, "multiple sclerosis is not a contraindication to any vaccine, including either of the pneumococcal vaccines."  A study by the University of Massachusetts Multiple Sclerosis Center also found Pneumovax 23 to "be safe for MS patients on immuno-suppressive therapy."  That being said, the heightened immune response from vaccinations can create potential implications in MS.  As always, you should consult with your healthcare team to determine your individual risks and reactions.   

Neurology Nurse Practitioner Response

Stephanie Buxhoeveden, MSCN, MSN, FNP-BC
Can Do MS Programs Consultant


The “MS Hug” is a nice name for an extremely unpleasant symptom that many people living with MS experience. It is caused by misfiring nerve signals and/or spasms of the muscles around the torso. Some people describe the MS Hug as sensations like burning, tingling, or numbness that may or may not be painful. Others feel a tightness, crushing, or squeezing sensation. There are a few steps to effectively managing the MS Hug:

Rule out a relapse or other cause: If it is a new symptom that has persisted from more than 24 hours, report it to your neurologist. It may mean you are having a relapse. There are also other conditions such as cardiac issues, gallstones, pneumonia, and costochondritis (inflammation of the cartilage around your ribs) that can mimic the MS Hug.

Medication: Over-the-counter pain relievers unfortunately don’t usually work well to control the pain and pressure commonly associated with the MS Hug. MS specialists use a variety of medication, depending on the individual's symptoms. Anticonvulsant medications (such as gabapentin or Lyrica) and antidepressants (such as Cymbalta or Amitriptyline) can help lessen sensory symptoms by quieting nerve pain. For pressure or squeezing, medications used for spasticity (like Baclofen or diazepam) can be used to relax tight muscles. Sometimes a combination of medications have to be used to get the best results.

Find the trigger: Keep track of your MS Hug symptoms and see if you can identify a trigger. For many people stress, fatigue, illness, dehydration, or being too hot or too cold can set off or worsen their symptoms. Understanding your triggers is often an important step to controlling your symptoms.

Other coping techniques: If you still have breakthrough episodes despite controlling your triggers and taking medications, you can try a few different coping techniques. Keep track of what you try and what does/does not work.

  1. Try pressing on the area with your hand or wrapping your torso with a bandage. This distraction technique can help the brain and nerves correct themselves. Hopefully, this will alleviate the pain. I have even heard of some people using a TENS machine for relief.
  2. If applying pressure does not work, do the opposite and try wearing loose/comfortable clothing.
  3. Relaxation techniques like meditation and deep breathing can help by breaking the tension. If you aren’t into meditation or breathing exercises, do something that you find relaxing to take your mind off of the pain.
  4. Try heat and cold. Take a warm bath or use a heating pad to ease tight muscles. If this doesn’t work, try an ice pack to numb oversensitive nerves.
  5. Change positions, move around, and try gentle stretches.
  6. Try massaging the area gently.
  7. Drink plenty of water since dehydration can worsen muscle spasticity and pain.
  8. Get some rest, your body may be trying to tell you to slow down.
  9. If you are sick, treat any fever and see your primary care provider as soon as possible.

Speech Language Pathologist Response

Pamela H. Miller, MA, CCC-SLP, MSCS
Can Do MS Programs Consultant

Multiple sclerosis can create weakness or incoordination of the tongue.  This, in conjunction with other effects on your lips and soft palate, may lead to difficulty with speech and swallowing.  This weakness can be caused by damaged neurons resulting from demyelination in regions of the brain connected to tongue activity, or it can be a side effect to some medications, particularly steroids.  If you notice tingling or numbing on your tongue, changes to abilities to swallow or taste, or weakness in your tongue motions, you should talk to your neurologist and dentist.  A speech language pathologist can also examine how you use your tongue and provide tips to manage these symptoms.  

To gain a better understanding of the tongue's muscular system, read this article by Sarah Gehke, MSN, RN, for Pacific Medical Training.  The National MS Society and Everyday Health also have great resources about the impact MS can have on oral health.  As the tongue plays an important role in swallowing, I would also recommend this Can Do MS article and webinar on safe swallowing tips from fellow Programs Consultant and speech language pathologist Janet DeClark, MA, CCC-SLP.


Psychologist Response

Rosalind Kalb, Ph.D.

Can Do MS Programs Consultant Coordinator


Depression, anxiety, fatigue, and altered cognitive and emotional functions are major symptoms of multiple sclerosis.  Compounded, these can create "mood swings" that can impact your self-care, relationships, work, and overall quality of life. With this in mind, it’s important to be aware of the most common mood changes that occur in MS.

For most people with a chronic illness like MS, as well as their support partners, healthy grieving over changes and losses is part of the picture. Beginning with diagnosis, and again with changes in function or everyday activities, people need to grieve over losses they experience before they can move forward with their lives. Normal grieving ebbs and flows with these changes. Depression, on the other hand, is both a symptom of MS and a reaction to the challenges it poses. More than 50% of people with MS will experience a major depression. For somewhat different reasons, support partners are also at risk for depression. Regardless of the cause, depression deserves the attention of your healthcare team. Accurate diagnosis and adequate treatment – ideally consisting of counseling, medication, and exercise – are important.

Mood swings and irritability are also common symptoms of MS, caused by the disease itself and its challenges. These mood changes can easily be confused with depression, in part because people with MS who are depressed may appear more irritable or moody than tearful. Depression, however, does not come and go in the same way, and will generally continue or worsen until adequate treatment is provided.

Anxiety is as common in MS as depression, but generally receives less attention. People with MS and their support partners experience anxiety over the unpredictable impact of MS on their day-to-day lives and the future. Left untreated, anxiety can interfere with planning, problem-solving, and quality of life. Counseling – with medication, if needed – is an effective treatment strategy.

Physical activity and/or exercise are often recommended as adjunct or even primary therapy for depressed mood, anxiety or stress. While controversy remains, the collective evidence suggests that exercise might indeed be helpful for these conditions in the general population. For persons with MS, exercise appears just as likely to promote psychological well-being. It is likely that aerobic or resistance (aka strength) training can be effective and that the exercise need not be intense. It may even be possible to see the positive effect of exercise on mood after only a single exercise session. Finally while most of the research in this area has been on traditional forms of exercise, yoga, tai chi, and even sport climbing have been shown to improve psychological well-being, including mood, fatigue, anxiety, and depression.

Click here to get even more great tips on this topic by viewing our archived webinar on Managing Depression & Mood Changes.  Please also read this article I co-authored, Taking Charge of Depression and Other Mood Changes.  The National MS Society also has some great resources, including Mood Changes.

Knowing that mood swings are a real and common symptom of MS, the first step to recognize when these mood swings occur.  Talk to your family and loved ones, document your moods in a journal or diary, and consult with mental health professionals.  Your healthcare team can then work with you to develop individualized management and coping strategies. 

Neurologist Response

David Jones, MD

Can Do MS Programs Consultant


One of the most common questions that I am asked in my practice is in regard to stem cells. I suspect that the reason for this relates to differing goals between people with MS (wanting symptomatic and functional improvement) and that of the disease modifying therapies for MS, the current purpose of which is to reduce relapses, reduce new MRI lesions, and thereby delay disability. It is important to note that all stem cell manipulations for MS are still in research, with unproved efficacy and safety, and I would argue that having to pay money to participate in a research study is ethically questionable. Further, the long term safety of stem cell procedures is arguably incompletely defined in any disease state, especially one like MS in which the person may live for decades after diagnosis.

Much of the stem cell research in MS is with autologous hematopoietic stem cell transplantation (AHSCT, or “bone marrow transplant”), in which stem cells are mobilized from the bone marrow and then harvested from the blood. After this, high doses of chemotherapy are used to destroy the existing immune system, and the stem cells are reintroduced to “create a new immune system.” Several studies suggest this technique is very effective in MS efficacy, although there have been a few severe side effects (including death) in these studies; further, the goal of AHSCT is to stop progression of the disease and not necessarily to reverse pre-existing disability. Other stem cell research involve the use of mesenchymal stem cells, which may help modulate the immune systems attack of the nervous system and protect nerves from being irreversibly damaged. Studies with mesenchymal stem cells in MS are not as far along as those involving AHSCT.

The idea of using stem cells to repair pre-existing damage from MS still has some significant hurdles to overcome. Work is going on with remyelinating agents (including influencing resident stem cells to restore the myelin surrounding nerves); however, I would argue that the structure of myelin is more complex than typically recognized and involves more than just rewrapping a wire with electrical tape. Any attempts at remyelination requires that the wires of the nerves (axons) be intact, but unfortunately, much disability in MS is attributable to axonal loss. Restoring lost axons involves further issues, including ensuring that the correct connections are made between nerves and what they are supposed to control, which obviously is a difficult task.  We spend a lifetime refining the connections between different parts of the brain as we learn new things and gain the ability to perform new tasks.

Other questions to consider with stem cells include how do the stem cells know where to go to correct the damage, how do they know how to not attempt to repair where there is no damage, and how do they turn off after the repair has been completed. There are complex signals that exist in a developing human to control these stem cells, and it is not entirely clear that these signals are as prevalent or in sync if exogenous stem cells are introduced into an adult. In summary, the idea of stem cell therapy for multiple sclerosis is very interesting and exciting, but there are still many questions in regard to the goals, efficacy, and safety (long and short term) of these techniques.

Nurse Practitioner Response

Gail Hartley, MSN, NP, MSCN

Can Do MS Programs Consultant

As flu seasons nears, this is a common question for people living with MS and concerned about injecting the inactivated virus from a flu shot.  According to the National MS Society, the injectable flu vaccine has been extensively studied in persons with MS and is considered safe regardless of the disease modifying therapy one might be taking.   However, it is recommended that persons taking Lemtrada or Ocrevus receive inactivated flu vaccine at least 6 week prior to their infusion.  In addition, persons who are experiencing a serious relapse, or receiving steroids to treat a relapse, should defer vaccination for 4-6 weeks after the onset of the relapse.  

Here are some other tips from the National MS Society:

  • People on therapies that suppress the immune system (immunosuppressants), such as mitoxantrone (Novantrone), azathioprine (Imuran), methotrexate (Trexall), cyclophosphamide (i.e. Cytoxan) and/or chronic corticosteroid therapy should consult their neurologist before taking any live-virus vaccine. A person with a suppressed immune system would be at greater risk for developing the disease.
  • Inactivated vaccines are generally considered safe for individuals who are taking an interferon medication, glatiramer acetate (Copaxone), mitoxantrone (Novantrone), natalizumab (Tysabri), or fingolimod (Gilenya).
  • People who have received immune globulin preparation in the past three months may not receive the full effect of a vaccine.  A recent study demonstrated that teriflunomide-treated patients (Aubagio) generally mounted effective immune responses to seasonal influenza vaccination1.

For more information, watch this video by Dr. Mary Hughes.

Ultimately, all vaccinations present risks.  However, for most people, the flu shot is safe and effective, particularly in light of the profound risks created by the flu virus (e.g. precipitation of MS exacerbations, complications on mobility, pneumonia).  This is a great time to consult with your healthcare team to discuss your individual risks and benefits.  

Social Security Disability Attorney Response

Jamie Hall, Esq.

Attorney-at-Law

There are multiple ways for a person who becomes disabled before age 18 to qualify for benefits.  First, if the child has had a part-time job, they may be eligible under their own earnings history for Social Security Disability income (SSDI).  For instance, earning only $3800 during two separate years would be sufficient to financially qualify an individual under age 24.  Second, the child may be eligible for SSDI benefits if they have a parent who is receiving Social Security benefits under either a retirement or disability program.  Third, if the family income and assets are low, the child may be able to qualify for benefits under the Supplemental Security Income program (SSI), which pays a much more modest benefit than SSDI.

Notably, the above addresses only financial qualifications; a claimant must also prove medical disability.  Although disability claims on behalf of minors are challenging, they can be successful when significant limitations exist, the treating physicians support the claim, and the individual or attorney presents a well organized claim.  I would recommend consulting with an attorney that specializes in SSDI to determine the qualifying factors in your particular situation.  For more information on these changes, please view this webinar that I co-presented with Can Do MS Programs Consultant Coordinator and clinical psychologist Roz Kalb, as well as this guide from Can Do MS and the National MS Society.

Physical Therapist Response

Mandy Rohrig, PT, DPT

Can Do MS Programs Consultant Coordinator


First, I applaud you for your initiative, investigative spirit, and interest to look "outside the box" at a variety of rehabilitation options.  Many fine institutions, including Ohio State University, are taking significant steps to enhance clinical research and comprehensive care following spinal cord injury (SCI) to help individuals and their families re-enter into full community life.  However, at this point, it is unclear the ramifications that this new relatively new research could have on MS rehabilitation.  The American Congress of Rehabilitation Medicine and the Christopher Reeve Foundation have noted some similarities between interventions for people with SCI and MS.  However, according to the National MS Society, rehabilitation for MS may be quite different because there is no “fixed deficit” like in SCI.  In other words, the symptom profile of MS, the lesion burden on MRI, and the unpredictably fluctuating nature of individual autoimmune resources and the course of the MS, particularly following exacerbations, make it extremely challenging to determine whether a rehab strategy will or will not be successful. 

Ultimately, I would encourage you to contact the rehab institution directly, in consultation with your healthcare team, for more information to determine if their services can and should be applied to your particular situation.

Urologist Response

Susan Kalota, MD

Can Do MS Programs Consultant


Incontinence is the inability to hold the normal amount of urine because of a spastic (overactive) bladder.  In MS, this is happens when lesions block or delay transmission of nerve signals in areas of the central nervous system (CNS) that control the bladder and urinary sphincters.  If you are experiencing some changes in your bladder function, you have a great deal of company. Probably 85% of people with MS will experience problems with bladder function at some time in their course of MS. It has personal and medical implications and is a symptom of MS that actually has a number of strategies to help. It is helpful to know a little about why this is such a commonly seen symptom. It is also helpful to know that bladder dysfunction can occur because of other problems as well so needs to be discussed with your family doctor, your neurologist or your gynecologist.

Bladders are told what to do by the brain and spinal cold. Peripheral nerves at the bladder send information to the spinal cord and brain. When brain, cord and bladder nerve s are working well, function is normal, but when MS causes lesions in the brain and cord, transmission of messages is slowed or interrupted causing you to experience symptoms. Why is this an issue? Symptoms can be inconvenient and uncomfortable and can intrude on your life style. You might have infections in either the bladder or kidneys or both. You can develop increased pressure in your kidneys causing major health issues. Problems can decrease your self esteem and can force you into isolation.

Bladder dysfunction falls into 3 categories. They are:

  • Storage dysfunction
  • Emptying dysfunction
  • Combined dysfunction

The symptoms for each can be similar so it is difficult to immediately know which type of problem you have. It is good to keep track of your symptoms and share them with your health care provider so that appropriate treatment can be initiated.

Storage problems occur when the brain is not able to allow the bladder to fill causing the bladder to empty frequently but completely. Symptoms include urgency, frequency, urge incontinence and few, if any, bladder infections.

Emptying dysfunction occurs when the messages to the bladder and its sphincters are slowed or absent so the bladder does not know it needs to empty or may not empty completely. Symptoms include frequency, urgency, urge incontinence, incontinence without urge, hesitancy, slow urine stream and history of bladder infections.

Combined dysfunction is a lack of coordination between the bladder muscle and the sphincters. This often traps urine in the bladder. Symptoms include urgency, hesitancy, dribbling, incontinence and infection.

If you experience any of these symptoms on a regular basis, talk with your provider. Depending on the symptoms, he or she might recommend a medication, a change in lifestyle, or a referral to an urologist.

So, bladder problems are an issue in MS but relief is available. Start keeping track and asking questions of your provider. Your good health and quality of life depend on it!

Click here to get even more great tips on this topic by viewing our archived webinar on Bladder Issues and MS.

Psychologist Response

Meghan Beier, Ph.D.

Can Do MS Programs Consultant

The short answer is "yes."  MS patients often present anxiety because of the uncertainty of living with MS, a disease hallmarked by ambiguity.  Data show that 85 percent of people with MS have periods of stable health followed by an episode of worsened symptoms that may or may not fully remit.  Not only are uncontrollable and unforeseeable life change (especially health changes) common causes of anxiety, the changes in the manifestations of anxiety in MS can make it can be hard to diagnose and treat. Being able to cope with this uncertainty is central to managing your anxiety and overall psychological well-being.  I highly recommend acceptance and commitment cognitive therapy. This type of intervention focuses on mindfulness, acceptance, and a commitment to living a life focused on what is important and meaningful—as opposed to living a life based on avoiding or being stuck on challenges, which can also cause or exacerbate anxiety.  Instead, you can identify what is most valuable to you and then uncover a way to obtain that value, despite your MS symptoms.  Because MS affects so many aspects of life, I also recommend you address your anxiety with a multidisciplinary team to allow treatment from many different angles. I often coordinate with psychiatrists, neurologists and physiatrists, as well as physical, speech, and occupational therapists, on a regular basis to provide comprehensive care for patients with MS. 

For more information on anxiety and MS, Can Do MS has an extensive library of resources, including two webinars that I co-presented:  Workout Your Worries: Anxiety and Exercise in MS and Discover the Invisible: Pain And Depression in MS, which includes a section on diagnosing and managing anxiety.

In response to your concern about claustrophobia:  Although I am not aware of any research directly linking claustrophobia to MS, MRIs require being still in a tight, enclosed tube.  If you experience discomfort or fear of confined spaces, your MRIs could certainly exasperate those negative feelings.  I would also bring this up with your healthcare team to come up with some solutions.  I would also recommend this first-hand perspective from an MS patient experiencing similar issues in Multiple Sclerosis News Today.

Nurse Practitioner Response

Pat Kennedy, RN, CNP, MSCN

Can Do MS Programs Consultant


Unfortunately, tooth loss is rather common among people with MS.  MS causes a myriad of symptoms, including fatigue, muscle control failure, spasticity, numbness (e.g. facial palsy), dexterity weakness, trigeminal neuralgia, and other manifestations of pain.  Even one of these symptoms can make brushing your teeth properly nearly impossible.  Many MS patients may also find that relaxing in a dental chair can be difficult, either because of spasticity, pain, or problems with swallowing or breathing.  This can prevent them from receiving a proper check-up.  Finally, depression, which is another major symptom of MS, is associated with compromised self-care, including oral health.

Also, certain medications can contribute to tooth decay in some people.  Most significantly, opioids, along with other pain medications, beta blockers, antihistamines, and antacids, can cause erosion of tooth enamel and dry mouth.  Dry mouth reduces saliva, which is critical to cleansing the mouth of bacteria and protecting nerves.  Steroids, which are often used to treat MS relapses, suppresses the immune system.  So, if an MS patient experiences gum disease, steroids may prevent the gums from healing properly.  Faster progression of gum disease means a greater likelihood of lost teeth.    

Modifications to your dental care- especially your self-care strategies- are vital to your oral health and overall wellness.  The good news is that dental professionals are becoming more aware of the effects of MS on oral health.  You can find dentists that specialize in MS (the MS Society’s Navigators can help you find local resources at 1-800-FIGHT-MS).  They can work with you to create an individualized treatment and hygiene plan.  An occupational therapist can help you find adaptive equipment and techniques to help you.  You should also ask your doctor how your medications may affect your oral health. 

 It is also very important to get the support of your family, who can help you with your at-home dental care.  If you are experiencing discomfort at your dentist appointments, it is also recommended you schedule shortened visits more frequently, particularly if you are having difficulties with your at-home hygiene.  I would also recommend trying to schedule your appointments during periods of remission, if possible, and earlier in the day to avoid worsened fatigue.  Here are some other tips from Everyday Health:

 Try a soft, electric toothbrush, but avoid those with circular brush heads.

  • Ask for help from a family member or personal aide.
  • Wrap foam around the toothbrush handle to make it easier to hold.
  • Sit down to brush and lay in bed to floss.
  • Use an alcohol-free mouth rinse, such as Biotène Dry Mouth Oral Rinse.
  • Use toothpastes with prescription-strength fluoride.
  • Tooth remineralization products may be helpful (such as Recaldent, sold by dentists as a paste and also an ingredient in Trident Xtra Care chewing gum).
  • Talk to your healthcare providers!

Speech-Language Pathologist Response

Pamela H. Miller, MA, CCC-SLP, MSCS

Can Do MS Programs Consultant

It sounds as if you may be asking about dysarthria, which can be present in approximately 1/3 of those with MS (overall, about 40-50% of people with MS experience speech difficulties).  . It is caused by neuromuscular weakness, slowness, and incoordination of the lips, tongue, soft palate and/or diaphragm, which may interfere with speaking clearly and loudly enough.

The good news is that a person can often be understood more easily by using improved communication strategies. Knowing how common speech problems are with MS, I would suggest to have an honest conversation with your sister, let her know what you are observing, provide some research on its common prevalence in MS (there are a lot of resources on the websites of Can Do MS, the National MS Society, and the MS Association of America), and encourage her to learn and utilize these strategies.  Ultimately, her problems will not get any better (and may perhaps worsen) if she is not made aware and takes steps to learn coping mechanisms.  Make sure this conversation happens in a safe, quiet environment where she will be able to understand you.

 It is important that your sister asks her physician for a referral to a speech/language pathologist, who evaluate her specific speech problems and design an individualized therapy program.

Because communication involves both the speaker and the listener(s), it is a good idea to educate others. It can put everyone more at ease and give permission for how the listener may help in the process. Encourage your sister to say, “I have a speech problem because of my MS. Tell me the words you hear. I will fix words you do not understand.”

 Speech strategies for your sister to use (or be reminded of) may include:

  • Ideally: Quiet room, face to face, 1:1 conversation
  • Allow more time to concentrate on speaking clearly
  • Open your mouth more and exaggerate articulation
  • Fill your lungs and speak more loudly
  • Use phrasing: Say just 1-3 words between pauses

 

Hopefully, these suggestions will help you and your sister, as well as others experiencing the same communication challenges.  For more information, please watch this webinar and read this article on managing speech problems, as well as this article on language challenges.  If you are having trouble initiating this conversation with your sister, I would recommend reaching out to others members of her support system (e.g. a trusted friend) and/or healthcare team. Therapists and other mental health professionals are trained to help develop communication strategies that may be helpful.

Nurse Practitioner Response

Gail Hartley, MSN, NP, MSCN

Can Do MS Programs Consultant


Numbness, tingling, and burning sensations are commonly experienced by persons with MS. The severity of the symptoms can range from very mild to annoying to extremely painful. The degree of discomfort, or how much it interferes with your ability to function determines how aggressively this symptom needs to be treated. For some, no treatment at all is necessary. For others, pain that interferes with walking or other task may require medications. 

Although I can’t provide specific advice, here are some general suggestions:

 

  • Manage your stress, sleep, and heat: Some persons experience more symptoms when they are under stress, tired, or overheated. Learning to manage stress, getting enough rest, and avoiding over-heating may help.  Your healthcare team can help develop strategies in each of these areas (which often times are related)
  • Complimentary/Alternative Medicine:  Reflexology, Acupuncture, and Biofeedback have been reported helpful for some persons. Consult your HCP before engaging in a new treatment.
  • Medications:  Commonly used medications for treatment of these abnormal sensations include gabapentin, amitriptyline, or duloxetine. Like all medications, these drugs may have side effects.  While they may not completely relieve your symptoms, they may reduce them to a tolerable level.

 

 

 

Note: If you notice significant changes in the intensity of your symptoms, or the symptoms have persisted longer than 24 hours, this could signal a relapse.  Consult your neurologist to determine the appropriate treatment in this case.

There are a lot of great resources on tingling and numbness, including this video on the National MS Society website.


Occupational Therapist Response

Laura Kingston, OTR/L

Can Do MS Programs Consultant


I would first have you consider how you are going about your days before you "crash".  Do you pack your days with activity without any rest breaks or do you pace yourself throughout the day? If you have a daily "To Do" list, preplan a few 15-30 min breaks into your day. This will help you re-charge your battery BEFORE you begin to get fatigued. By doing this you will help prevent your body from hitting that wall of fatigue.  

Think of your energy levels like a banking account... you need to decide how you are going to invest your energy (banking) and how you are going to expend your energy. You have to find ways to re-charge your battery in order to have energy to expend.  

Some areas that can cause fatigue- aside from primary MS fatigue, which is caused by MS itself- are poor sleep, medication side effects, poor diet, high caffeine intakes (particularly in the afternoon which may disrupt sleep), uncontrolled spasticity, poor body mechanics, and increased core body temperature that is not managed well throughout the day. Also, inactivity is a major cause of “crashing.” Exercise and physical activity can actually give you energy that will help sustain you throughout the day. 

Consider looking at any of these areas and make proper adjustments to help minimize your fatigue.    An Occupational Therapist that specializes in MS can help you further analyze and provide specific fatigue management strategies for your lifestyle. 

For some more tips on how to avoid the “crash,” please watch this webinar and read this article by Can Do MS.  This is also a good article on fatigue management.  Finally, Can Do MS’s in-person programs help you develop strategies to conserve energy and manage fatigue.  I would highly suggest attending one if they are available in your area.

Physical Therapist Response

Courtney Capwell, DPT, MSCS

Can Do MS Programs Consultant

Foot drop is commonly caused by weakness in the dorsiflexors (the muscles that lift the toes away from the floor during walking) and plantarflexors (the opposing muscle group which point your toes when contracted). In order to improve foot drop, it is important to focus on strengthening both of these muscle groups. In addition, strengthening your lower extremity, specifically the hamstring muscle, is important for bending your knee appropriately, maintaining healthy posture, and performing weight-bearing activities safely and efficiently. Working with a physical therapist is a great way to initiate a full strengthening program. Physical therapists can instruct you in appropriate exercises and guide you in correct performance. 

I have put together some exercises on HEP2go that you may find helpful.  You can access these exercises by visiting 

www.my-exercise-code.com/index.php?uid=13d07a90a0a77272382c2c419fdf10cb and entering the code RP57HBB.  

I would recommend consulting with your healthcare team first to ensure you can perform these exercises safely.  Hopefully, they can start you on the path to managing these symptoms.

For more information, I would recommend this article and webinar on managing unique MS symptoms by fellow Can Do MS programs consultant and physical therapist Patty Bobryk.

Clinical Psychologist Response

Gayle Lewis, Ph.D., MSCS

Can Do MS Programs Consultant

Feeling that the people who support and care for you, in fact, see you as someone who, for lack of better terms, is a pain in the ass in their respective lives is certainly an awful feeling and an all-too-common burden for people living with MS and many other conditions.   However, I would suggest that the actual burden you are creating is more profound from your subjective perception than it actually is to them.                       

My first question – do you have any actual evidence that your husband and family see you and experience you as a burden? Has anyone actually said so or alluded to this feeling?  The most direct answer to your question on dealing with the guilt is to communicate your feelings honestly and openly to your family, and provide them with the opportunity to honestly and openly communicate their feelings with you.  A therapist can help facilitate this dialogue.

 Yes, dealing with MS as the patient IS a big responsibility, accompanied by many daily issues to be dealt with, on your own and vis-à-vis the assistance of others.

And, yes, the stress of daily assistance can take a physical and psychological toll on the caregiver, causing caregiver burden.  Caregivers are often reluctant to ease their own burden and take care of themselves.  However, early recognition of caregiver burden can help you and your loved ones determine appropriate interventions.  Ultimately, your family loves you and they are invested in caring for each other.  Focusing on “who deserves or doesn’t deserve” being part of this team is a zero-sum game.  Instead, you can focus on the positives in the lives who have lead together and will continue to lead in the future.  The National MS Society has actually found that MS can draw partners more closely together as they provide deeply satisfying care and meet the challenges of caring for a loved one with a chronic illness.

Without being too much of a sideline therapist who knows nothing about you except the worry I feel in your question, could it be that you are projecting your own self-hate and anger about what MS has taken away from you and complicated your life onto your husband and family members? In other words, are you assuming that they all feel taxed by your MS and its progression because you feel that way yourself?

Let’s say this is the case….and/or that your loved ones DO feel burdened and overwhelmed by your MS…I would recommend individual therapy for both you and your husband, as well as couple’s therapy for the two of you to talk about these things in a safe space.  Group therapy would also be helpful to share with others going through the same concerns/experiences and learn from their own helpful insights.

Again, this is cursory guidance as your situation requires individualized attention from a mental health professional.  However, you have taken a great first step by recognizing your concerns and seeking information to cope.  I hope you will continue to use Can Do MS as a resource.  For more information, I would suggest watching this webinar on supporting family members and this webinar on relationship issues in MS.  There is also a great video on coping and managing complex care needs in advanced MS.

Response by Paula Hardin, MS News Columnist; reprinted with permission from Multiple Sclerosis News Today 


You might think that the Fair Housing Act required multifamily buildings to have elevators, but no, it doesn’t. For example, multifamily dwelling of four units that does not have an elevator is not required to have one. However, the ground floor units must be fully accessible (no steps). Policies like this cut the available housing stock for disabled people in half. How is that FAIR?

For equal access to housing, all housing would have to be accessible, designed to universal design standards. This would benefit everyone, just as the “curb cut effect” helped many people at street crossings.

 

Would you take an elevator or stairs?

Cost is the primary argument against mandating all multistory residences, including single-family dwellings, to have elevators. However, the cost would decrease with mandatory requirements, vastly enlarging the demand.

Truly fair housing requires all homes that are multistory, and all multifamily multistory dwellings, no exceptions, to have elevators.

Hear me out

Able-bodied people can choose from all available housing, even housing with elevators and universal design features. They can visit any family or friends living in any kind of home. People with multiple sclerosis (MS) often do not have that luxury.

Another feature that able-bodied people can manage, like basement laundry rooms accessible only by stairs, are usually assets for them. Actually, having no in-home laundry facilities has a disproportionate negative impact on people with disabilities and other vulnerable groups.

“Aging in place” would be much more possible with residential elevators. Mandating elevators for future housing would mean everyone could age in place.

Residential elevators cost too much now because the demand is artificially low. This creates a negative feedback loop: People don’t put in residential elevators because they are too expensive, and residential elevators are expensive because there is no demand.

The following quote is from a report by the U.S. Department of Housing and Urban Development, Accessibility of America’s Housing Stock: An Analysis of the 2011 American Housing Survey (AHS).”

“A quarter century later, our analysis of United States (U.S.) housing data suggests that although around a third of housing in the U.S. is potentially modifiable for a person with a mobility disability, currently less than five percent is accessible for individuals with moderate mobility difficulties and less than one percent of housing is accessible for wheelchair users.

The availability of accessible housing is critical to enable people with disabilities to live independent lives with a minimal amount of support. It is also essential to enable people with disabilities to participate in society by visiting the homes of friends and family. Housing that meets the needs of people with disabilities is increasingly important for the U.S. as the population ages.”

Less than 1 percent of housing stock is accessible for wheelchair users.

ADA is not a building code

The ADA responds to civil rights needs. With rugged individualism the pride of the nation, and the sacrosanct nature of private property, some would resist mandatory elevators. Bathrooms are expensive too, but that won’t be a feature eliminated from building requirements any time soon.

We could change that by bringing attention to the advantages of universal design housing at every level of government and pitching it to developers. Maybe even talking to elevator companies about increasing options for residential housing elevators.

Click and see the possibilities

Here’s a video of  a clear tube for one person to stand up in, though that wouldn’t meet our needs with wheelchairs without enlarging it. Visilift, a home elevator manufacturer, has a video of a woman with severe knee problems that made stairs in her home impossible. Their octagonal version at 48 inches square might fit a wheelchair. Being able to fit in a tube with a toddler would be good, too!

Ah-ha, a company called Pneumatic Vacuum Elevators has an elevator that will fit a wheelchair! No surprise that they are located in Florida. Elevator Ready also has elevators for outside access.

It’s not all or nothing

Changing home requirements to at least mandating the space for a potential elevator to be added (used for closets otherwise) would help, but would probably double the cost burden for a buyer with disabilities to install after purchasing.

People with disabilities and others will never have a chance for fair housing unless we persuade municipalities and developers that it will pay off on the primary sale and resale value.

But first, we need to start the discussion!

For information on your rights under the Fair Housing Act and guidance on financial assistance, contact a National MS Society Navigator at 1-800-FIGHT-MS.

*  This article is the copyrighted material of Multiple Sclerosis News Today.  Thank you to Multiple Sclerosis News Today for permission to reprint this article.  

Physical Therapist Response

Mandy Rohrig, PT, DPT

Can Do MS Programs Consultant Coordinator


Thank you for this great question!  Losing the ability to participate in the sports you love the way you are used to doing them can be very painful.  However, the founder of Can Do MS, Jimmie Heuga, believed very strongly that you “can do” these great recreational activities with some adaptations.                     

First, I’m thrilled that you are passionate about the sports of kayaking.  It’s a great way to build muscle strength in your arms, legs, back, shoulders, and torso.  Men’s Journal recently named kayaking as one of the best workouts for heart health, decreasing fat and increasing lean muscle mass, as well as improving breathing and cardiovascular health.  There is growing research into the benefits of kayaking, including this article in the Journal of Sports Science & Medicine   Plus, it’s fun, serene, and provides great opportunities to explore!

Moreover, kayaking can be adapted to almost any physical ability.  Single kayaks can be adapted to be powered by foot for people with arm weakness, or with deeper seat-pockets for those with trunk muscle weakness.  Read this great article, “Outfitting A Kayak For Paddlers With Disability.”

There are also organizations across the country dedicated to providing instruction and opportunities for people to experience adaptive kayaking.  I would recommend reaching out to the National MS Society, the MS Cure Fund, Disabled Sports USA, National Sports Center for the Disabled, and National Ability Center.

With the right equipment and support, you can absolutely continue to kayak.  We hope you find the right fit for you!

Dietitian Response

Mona Bostick, RDN, CSO, LDN

Can Do MS Programs Consultant


This is a great question because there is an overwhelming information, particularly online, about supplements.  Much of this information is marketing and advertising in nature rather than honest assessments based on research.  Here are quick summaries on the supplements you have mentioned:

Ginkgo biloba: Recent research suggests that ginko biloba does not improve cognitive performance or disease course in people with multiple sclerosis. Please read my blog article on this here.

Ginseng: There is no evidence to suggest that ginseng offers any health benefits for folks with MS. Ginseng is an herbal stimulant with risks for side effects and medication interactions. It is a stimulant much like caffeine, but it also stimulates the immune system—which could, in theory, interfere with MS disease course or disease modifying therapies.  Ginseng is also known to interfere with blood clotting and may interfere with medications like warfarin (Coumadin). Depending on the type of ginseng (Asian or Siberian), side effects vary from fatigue to stimulation and can impact sleep quality.

Take away: Save your money and avoid the risk...skip the ginseng and ginko biloba.

On the other hand, there is strong evidence to suggest that Vitamin D offers positive results, particularly in bone health. Deficiencies in Vitamin D is also linked with MS. Vitamin D supplementation is recommended, but there is not a universal dose as everyone absorbs Vitamin D differently. *It is important to have your doctor check your 25 hydroxyvitamin D levels and follow his/her recommendation about dosage. It may be trial and error that gets you to the appropriate dose for you but more is not better. I have also written about Vitamin D here.

As general advice, I recommend that you be cautious about supplements and be an informed consumer. Supplements are not regulated. So in my best Forest Gump voice… you never know what you’re gonna get.  Seriously. Whenever supplements are warranted, I recommend the NatureMade brand (or other USP verified products). Always look for the USP label, which means they are third-party verified as to their contents. Another resource for this is consumerlab.com.

Finally, always speak with your doctor and/or pharmacist before taking any vitamins/minerals/ herbal supplements, as they can significantly impact other areas of your care. Make sure to include all supplements on any medication list. 

Answer by Roz Kalb, Ph.D–  Clinical Psychologist and Can Do MS Programs Consultant

As a mental health professional, I know that losing the ability to do something you enjoy is always a painful loss. Regardless of one’s disease course, MS can cause symptoms that gradually or suddenly interfere with home, work, and recreational activities. Watching others continue to do them with apparent ease only makes the loss more challenging to manage. The grieving process is not only normal and healthy, it is the first step towards finding satisfying and enjoyable alternatives that may become passions.

It is important not to compare your grieving to other people.  The grieving process is unique to each individual -- faster for some and slower for others. Some people need to grieve privately while others benefit from sharing the experience with others or with a counselor. Whatever your personal style, the important thing is to allow yourself this grieving time.

The next step is to allow yourself to consider options – looking at new ways to do the things you love and considering new activities that you might never have tried before. People who are forced to give up activities they love may try an activity they would never have considered in the past and discover a new interest.  This may be “easier said than done.”  My biggest recommendation is to utilize your support system and interdisciplinary health care team, who can work together to help you physically and emotionally.  In particular, physical and occupational therapists are great resources to help you explore your options to stay active.

 

Answer by Mandy Rohrig, PT, DPT –  Physical Therapist and Can Do MS Programs Consultant

As a physical therapist, I recommend a consultation with a rehabilitation professional – either a physical or occupational therapist – who understands MS. These professionals can help you understand your abilities, encourage exercises to optimize those abilities, and make adaptations to accommodate existing challenges.

If you excelled at cycling or did it competitively, you may feel disappointed in doing an adapted version of that sport.  However, you may discover that you love the new challenge. The first step will be choosing the attitude in which you approach finding alternative activities that may need to be adapted to your physical abilities.

You will be happy to know that the world of cycling has expanded greatly to accommodate everyone!  Three-wheel recumbents, arm or leg propulsion, or electric bicycles may be great options for you. I would recommend looking into electric bicycles because they allow you to pedal when able and use the electric feature when fatigued.  Many areas have group classes and outings so you can feel the social connection that you enjoyed with bicycling. 

Exploring other options for adaptive sports may be another strategy.  Nationwide, there are organizations dedicated to providing adaptive sports and recreation, such as golfing, swimming, kayaking, and skiing can be adapted for individuals of varying ability levels.

We would encourage you to explore the following resources:  www.disabledsportsusa.org and the National MS Society’s page about adaptive sports http://www.nationalmssociety.org/Living-Well-With-MS/Work-and-Home/Recreation-and-Travel/Finding-Another-Sport-to-Love.

A willingness to consider adaptations and viewing them as tools to participation is essential.  Many people living MS and other conditions have faced similar challenges and have found ways to continue participating in sports they love.  Perhaps speaking to or reading about others can inspire you.  The founder of Can Do MS, Jimmie Heuga, epitomized this spirit of adaption and modification to allow him to continue enjoying skiing despite his disease progression.  I would recommend reading Jimmie’s story:  https://www.mscando.org/about-can-do-ms/our-mission/founder.

Thank you for your thoughtful post. We hope you find ways to be active and fulfilled.

Neurologist Response

Randy Schapiro, MD, FAAN

Can Do MS Programs Consultant


In MS, an abnormal immune-mediated response attacks the myelin coating around nerve fibers in the Central Nervous System (CNS).  The CNS is composed of the brain (and its parts) AND the spinal cord.  As the name "multiple" implies, the abnormalities are multiple and present in BOTH the brain and spinal cord.  Thus, MS is a result of a malfunction in multiple areas of the brain and spinal cord.  That is the reason that each person with MS is different from the next and no two people with MS are alike.  

Nurse Practitioner Response

Stephanie Buxhoeveden, MSCN, MSN, FNP-BC

Can Do MS Programs Consultant


Thank you for addressing an all-too-common frustration among MS patients, and within the healthcare field in general.  It can be very difficult to get your many different providers to communicate with one another! However, it is important that everyone is on the same page to optimize the care you get and to prevent potential safety issues. Barriers to communication are sometimes difficult to overcome. Each of your providers requires written permission to share information with your other providers, so ensuring you have the proper “release of information” consent forms on file with each provider is an essential first step. Without that being done, nobody is legally allowed to speak to each other.

Then, you can request that each time one of those providers writes a note about your visit (i.e. what problems you discussed, physical exam, treatment plan, etc.), a copy is sent to your other team members. If your provider still does not send or receive notes from the others, then I would take matters into your own hands. I personally keep a copy of every note and every test result in a binder. That way, I can provide copies of anything to anyone at any visit, and I know that all my team members are using the most up-to-date information. I also remind each provider at the time of my visit by simply saying “can you please make sure Doctor Smith gets a copy of our note from today.”

In summary, you have to be your own self-advocate and initiate the communication between each discipline.  We are all aware that certain bureaucratic issues can, unfortunately, make this very difficult; however, there are steps you can take to help open the lines of communication and reinforce a “team approach” to your care.  For more information, check out this Can Do MS webinar and article on team-based decision making.  This is also a good article on making the most of your medical visits.

Psychologist Response

Pilar Poal, Ph.D.

Can Do MS Programs Consultant

Thank you for your questions.  I can appreciate your frustration with your current symptoms and feeling that pharmacological support is not enough.  These are common symptoms of MS, and they can at times be puzzling and disconcerting.

We know that brain lesions associated with MS can have an impact on cognitive functioning.  While some of the current pharmacological therapies used for MS may slow the progression of cognitive changes, using compensatory strategies can reduce the impact of decreased memory and organizational skills on your daily life. If you have access to a smartphone or computer, there are many free programs that can assist with reminders, lists, logs, calendars, and other tools. However, basic paper planners or boards can also get the job done. My recommendation would be to keep it simple, find one or two tools that work for you that are easy to incorporate into your daily routines.  For more tips on organization and overcoming forgetfulness, check out this Can Do MS webinar and article.

If you feel that your cognitive symptoms are worsening and significantly interfering with your daily life, you could discuss with your doctor the option of getting a referral for neuropsychological testing and cognitive rehabilitation.

Decreased coordination, which you describe as clumsiness, is a common symptom of MS and can be related to other MS symptoms, such as decreased balance, muscle weakness, spasticity, or fatigue. It may help to explore which ones are contributing the most to the decrease in your coordination.  Then, you can develop a plan with a physical therapist to specifically target those areas. Note, however, that fatigue is likely to amplify these and other MS symptoms, so learning to pace yourself throughout the day and make adjustments when you identify the beginning signs of fatigue can be a helpful strategy.

Exercise may also help with your "clumsiness."  Read this Can Do MS article for more information on the benefits of exercise on balance and coordination.

In regard to your concerns regarding sex drive, this is also a common consequence of MS and is associated with many factors. Sexual functioning can at times be directly affected by the neurological changes caused by MS. Other times, some MS symptoms such as spasticity, restricted movement, changes in sensation, bladder functioning, and fatigue can have an impact on sexual functioning.  In addition, body-image, relationship concerns, and expectations can also affect sexual drive. A good place to start would be to communicate with your partner regarding your concerns about your decreased sexual desire and to enlist his/her support so that you can address them together. Exploring the impact that physical changes, relationship roles, fears, and expectations may be having on your sexual drive can help clarify what is happening and identify possible ways to address your concerns.  In addition, it is important that you share with your partner what type of physical touch is pleasurable and what feels uncomfortable or painful. 

Another recommendation would be to broaden the way you think about physical intimacy with your partner so that you can have more ways of being physically close to each other. Explore together what changes may help you get in touch with the more sensual parts of yourself and possible situational factors that may increase your sexual interest (i.e. location, time of the day, leading up activities, etc.) While fatigue and other physical symptoms of MS may, at times, affect your sexual desire, sharing your needs with each other and exploring new ways to be emotionally and physically intimate will promote closeness in your relationship and minimize the chances that your decreased sexual desire will create feelings of distance or resentment between you and your partner.

For more insights, please watch this Can Do MS webinar, "Keeping Your Relationship Alive: The Physical and Emotional Aspects of Intimacy in MS."

Nurse Practitioner Response

Kathleen Healey, APRN, Ph.D.

Can Do MS Programs Consultant

Burning sensations are likely caused by spinal cord lesions, generally in the cervical or thoracic cord. The posterior part of the spinal cord is a sensory tract, and lesions here cause feelings and sensations (versus “motor tract lesions,” which impact body movement).  Specifically, lesions on sensory tracts often cause burning, numbness, and tingling anywhere below the level of the lesion.  Numbness and tingling in the legs and feet are common symptoms in multiple sclerosis. There are medications to treat this problem, as well as numerous other conservative measures that may improve symptoms.

Generally, the reason why people feel more tingling at night is that they are not preoccupied with activities during the day.  Any symptom present when laying down to go to bed tends to be more obvious as there are no other "distractions".

If this symptom has never been experienced before, it is important to notify your neurologist and other MS team members. Initial symptom that has never been experienced before may represent an active or new lesion in the spinal cord.

It is also important to know that for those diagnosed with multiple sclerosis, other diseases or problems (comorbidities) may occur.  Although this symptom is likely due to MS, they could also represent a “peripheral neuropathy,” especially in MS patients who also have diabetes, thyroid dysfunction, lower levels of Vitamin B12, or other medical conditions.  Notify your health care team as soon as these symptoms occur so they can help you sort out the potential causes and recommend appropriate management strategies.


Dietitian Response

Mona Bostick, RDN, CSO, LDN

Can Do Programs Consultant


While researchers are beginning to study the impact of Vitamin E on MS, there is no evidence that Vitamin E supplements offer specific benefit for people with MS.  In fact, taking high doses of antioxidants like vitamin E may be detrimental for folks with MS.  Large doses of vitamin E supplements (>400 IU) may also increase the risk of prostate cancer and bleeding.  Vitamin E supplements can also negatively interact with anticoagulant medications such as warfarin (Coumadin), as well as chemotherapy medications.

 

The recommended dosage for Vitamin E for adults is 15 mg (22 IU), which is tough to get from a supplement since most supplements exceed these numbers by far. More is not better. With this in mind, I would recommend consulting a professional before taking any Vitamin E supplements.  First and foremost, deficiencies in Vitamin E are rare.  Secondly, food sources of vitamin E are plentiful and easy to include in your diet.  Vitamin E rich foods include wheat germ oil, nuts, seeds, nut butters, vegetable oils, and spinach (cooked has more than raw).

 

Bottom line: skip the supplements and include vitamin E rich foods in your diet. 

Physical Therapist Response

Kathy San Martino, PT, NCS, MSCS, CLT, ATP

Can Do MS Programs Consultant

First, address weakness in the anterior tibialis muscle (the primary muscle responsible for lifting your toes). In a sitting position, perform toe taps. The anterior tibialis muscle is located to the outside of the shin bone so you should note a muscle contraction here when performing toe taps. Be sure the foot is lifting up straight. In other words, neither the big toe nor the little toe should be leading. 

Foot drop can also be caused by - or exacerbated by -  a tight or spastic gastrocsoleus muscle ( the muscle in the back of the calf).  >span class="apple-converted-space"> seconds. 

Lastly, it's important to work on your motor control of the leg. In other words, even if you have the right amount of flexibility and strength in your ankle, it is necessary to develop the motor control to use the right muscle at the right time and the right amount. So now, take the time to practice walking. Slow down your speed enough to focus on picking up your toes when you lift your foot to step forward. Your foot should then hit the ground with your heel first. Gradually work on increasing your speed of walking while preventing foot drop with each step. 

Sometimes an AFO/brace or electrical stimulation device is needed to control foot drop. Some people are worried about losing more control of the ankle by using a brace. The brace actually can control the spasticity in the calf muscle and prevent this muscle from developing a permanent contracture. The brace can be built to allow you to use whatever muscle control you do have in your ankle. Consult your health care team, particularly a physical therapist, to determine which brace or mobility device will best help you stay walking as normally as possible. This is important not only for safety, but also to maintain your endurance and the normal function of the rest of your leg. 

 


Exercise Specialist Response

Marina Moldavskiy, BS
Can Do MS Programs Consultant

I’m sorry to hear about this new onset of spasticity. Please make sure to consult your neurologist if it is causing you pain or interfering with your physical function, activities of daily living, or sleep cycle.

To manage your spasticity and increase strength/range of motion, it is very important to incorporate a stretching regimen into your daily routine, even on days you are busy.  While your hamstrings may be causing you the most trouble, it is also important to “give love” to all your muscle groups – hips, glutes, hamstrings and quads.  The order and detailed instructions of these exercises will depend on your individual abilities and body dynamics.  An exercise specialist or physical therapist can help you develop an individualized stretching program and put exercises in order that will be most beneficial to you. 

To start you off, I compiled some strengthening and range of motion exercises that specifically addressing spasticity issues on www.my-exercise-code.com.  To access these exercises, enter the following code:  B7SC7LY.  All of these exercises can be done at home, using a bed, chair, or tabletop surface to hold onto.  Start easy and increase the time and repetitions for each exercise when you feel ready to progress.

Finally, you should consciously integrate elements of dynamic stretching, passive stretching, and static streching in your program: 

  • Dynamic stretching means the stretch is performed by moving through a challenging but comfortable range of motion repeatedly, usually 10 to 12 times. Dynamic stretching requires more thoughtful coordination than static stretching (because of the movement involved) and has benefits in improving functional range of motion and mobility in activities for daily living.  Great for warming up your muscles.
  • Passive stretching means you’re using some sort of outside assistance to help you achieve a stretch. This assistance could be your body weight, a strap, piece of furniture, leverage, gravity, another person, or a stretching device. With passive stretching, you relax the muscle you’re trying to stretch and rely on the external force to hold you in place.  Focus on these stretches at end of your exercises. 
  • Static stretching means a stretch is held in a challenging but comfortable position for a period of time, usually somewhere between 10 to 30 seconds. Static stretching is the most common form of stretching found in general fitness and is considered safe and effective for improving overall flexibility. However, many experts consider static stretching much less beneficial than dynamic stretching for improving range of motion for functional movement, including sports and activities for daily living.


 A foam roller is also something great to invest in. Most come with a card that demonstrate the stretches you can do. You can find them on Amazon.com. 

Stay consistent and do not give up! You can do this! 



Answer by Mandy Rohrig, PT, DPT – Physical Therapist and Can Do MS Programs Consultant

Riding a recumbent bike may enable you to reach your fitness goals without increasing fatigue or exposing you to injuries from a loss of balance. In addition to being a fun activity that can be adapted to almost every ability, bicycling can help MS patients reduce stiffness/spasms and improve balance, gait, mobility, flexibility, and motor control. As you alluded to, you can continue to enjoy your passions with a little creativity and adaptation. For many people with MS, recumbent bicycles are a great solution!

According to Michele Turcotte, MS, RD, from the National Academy of Sports Medicine, “[t]he recumbent bike design allows you to comfortably distribute your weight over several square feet of the back and buttocks whereas on an upright bike, your body weight rests on only a few inches of the sit bones, feet and hands. For many riders, this positioning places stress on the wrists, depending upon how you sit, and can be uncomfortable. If ridden for more than 20 minutes, this discomfort may be intensified. If you're riding a bike outside, recumbent bikes have an aerodynamic advantage. The reclined, legs-forward position of the rider's body creates a smaller frontal profile, increasing efficiency and maximizing speed.” There have been other scholarly work identifying the benefits of recumbent bicycles, including this article by Regina Boyle Wheeler for Everyday Health.

However, Ms. Turcotte also points out that a recumbent bike may not be the ideal activity for everyone. An upright stationary bike may be more appropriate depending on your individual abilities and comforts. Arm bikes may also be a better solution for some, while others would be better suited to an eliptical machine. I would recommend consulting a physical therapist or personal trainer familiar with MS to determine which equipment will work best for you!

Finally, for some general tips on cycling, please read this article by former professional cyclist Tyler Hamilton. Tyler has been raising awareness about adaptive cycling for years and has partnered with Can Do MS on several programs. Read more about how Tyler is supporting MS Global. Perhaps you can get involved with this great international event that makes profound differences for people living with MS.

Answer by Stephanie Buxhoeveden, MSCN, MSN, FNP-BC – MS Nurse and Can Do MS Programs Consultant

Bowel/bladder issues and temperature sensitivity are extremely frustrating, but you are not alone! Struggling with these on a daily basis can really interfere with your lifestyle, so I commend you for being proactive in your care. I would suggest bringing the following questions and issues up with your provider, to ensure your symptoms are as well controlled as possible:

1) Let your healthcare team know which activities your symptoms interfere with the most. They may be able to offer helpful advice or tips to help prevent worsening symptoms due to weather changes, or even work with you to discuss exercises and dietary changes to minimize your symptoms. Remember that MS symptoms are interrelated and interdisciplinary, with complicated cause-and-effect relationships. Therefore, it is very important that the members of your healthcare team work together and communicate with each other in order to provide comprehensive care for your overall health.

2) Discuss your concerns about the cost of your medicines. There are several patient assistance programs out there, even for medications used to treat symptoms. Try checking for coupons on the medication's websites (for instance, Myrbetriq has a printable copay assistance card on their site), as well as on www.GoodRx.com and www.needymeds.com. Your healthcare provider should be able to help you find more resources and/or discuss medications that are more affordable.

3) Ask if there are any other healthcare professionals that could help. Assembling your healthcare team is essential, especially when dealing with bowel and bladder symptoms. It is great that you have a urologist already, and adding a gastroenterologist to your team could help control your incontinence. There are also pelvic floor PT programs that help some people living with MS, and other treatments (aside from medications) that may help. The National MS Society has a lot of great resources on this topic as well- http://www.nationalmssociety.org/Programs-and-Services/Resources/Managing-Bladder-and-Bowel-Issues-in-MS-(video-DVD?page=1&orderby=3&order=asc

As far as your broader question of "What questions should I ask," Can Do MS strongly believes that your relationship with your healthcare team is exactly that: a relationship, based on mutual trust and open communication. You are the expert of your own body. You are the director of the conversation. You are your own best advocate. Self-advocacy, however, is a skill that requires preparation, organization, and practice. We suggest creating a clear list of priorities to address and questions to ask. Doctor's appointments are inherently limited in time, so it is imperative that you make the most of your opportunities. There are a number of great online resources that can help you prepare for appointments, including:

- Getting the Most Out of Your Doctor's Visit, https://www.mscando.org/online-resources/can-do-li...

- Make the Most of Your Doctor's Visit, http://www.nationalmssociety.org/Treating-MS/Compr...

- Knowledge is Power: Working With Your Doctor, http://www.nationalmssociety.org/Resources-Support...


Answer by Gayle Lewis, Ph.D. – Psychologist and Can Do MS Programs Consultant

I'm very sorry to hear of your challenges. What you're describing seems to speak both to the depression and fatigue that often accompany MS, as well as the unpredictability of the disease. Having a chronic, unpredictable disease in itself can be very upsetting and overwhelming. Adding low energy, mood shifts, and uncertainty to the equation can understandably create frustration.

First, remind yourself that mood swings are a normal and quite prevalent symptom of MS. Hopefully, understanding that these issues are biological associations to your MS will make you feel less frustrated. Because these mood swings are caused by reactions in your body, they can be treated. YOU CAN BE IN CONTROL OF YOUR MOOD AND FEELINGS, rather than your MS controlling them. Speak to your physician about possible treatment options, including antidepressants or mood stabilizers (depending on what seems more appropriate). Here are some other tips that may help:

  • Mediation is a very regulating, calming and energizing activity that, again, YOU are in control of vs. feeling controlled by your MS.
  • Acupuncture has been shown to be helpful in dealing with emotional and physical fatigue.
  • Speaking to a therapist regularly can be very useful in managing your feelings about your MS and offer ideas how to deal with the disease in ways that are useful to you.
  • Add things to your life that allow you to feel empowered...this alone can have a wonderful capacity to bring you energy and strength.

Secondly, I would highly recommend you implement energy management strategies. It's very difficult to suggest that one conserve energy at times when you actually HAVE energy....but that's very important to do. Ideally, you'd like to motivate your system to be more in balance...and for YOU to be in charge, rather than your MS ruling your feelings. This might mean incorporating tools into your life that make doing chores easier and less time-consuming, getting help from others, and spreading your tasks out throughout the day. An Occupational Therapist can provide ideas about making tasks less energy-evoking.

Finally, it is important to be aware of your changing feelings, moods, and energy levels. Can Do MS recommends keeping a journal and sharing this with your healthcare team. People with MS and support partners are significantly at risk for depression, mood swings, and anxiety. These symptoms have been noticed as a major feature of MS for over 100 years, but are often overlooked by healthcare professionals. You have to be your best advocate and educate yourself. Can Do MS is a great place to start. They have some wonderful articles and webinars on managing depression and fatigue. The National MS Society also has an extensive library devoted to emotional changes and mood changes. I hope these ide

Answer by Meghan Beier, Ph.D – Neuropsychologist and Can Do MS Programs Consultant

The short answer is that any exercise of any duration, especially when it leads to improved physical fitness, is likely to have a positive impact on cognitive functioning. Although exercise might improve multiple areas of cognition, the area that seems most impacted is executive functioning. I think of executive functioning as the CEO or coach of the brain. This area helps us organize, plan multi-step activities, initiate behaviors, or inhibit emotions/behaviors we don't want. Both aerobic- and strength- based exercises have been associated with improvements in executive functioning. There are both behavioral and physiological theories as to why we see improvements in this area.

Physiologically, there is some suggestion that exercise might increase electrophysiologic activity and oxygenated blood in the prefrontal cortex, leading to improved executive functioning. Exercise may also result in increases in dopamine transport within the fronto-striatal network or central executive network.

Behaviorally, engaging in and maintaining an exercise program takes planning, initiation, and self-control. Therefore, it is possible that people who stick with an exercise program and make the most gains already had some strengths in executive functioning. Conversely, exercises themselves are tasks that require attention and inhibitory control. For example, the act of walking itself may be exercising executive skills. The brain has to coordinate both legs, placement of feet, and what muscles to activate or relax in a specific order. Thus, coordinating physical movement, in and of itself, can exercise this area of the brain, in addition to improving strength or fitness.

To learn more about the relationships between exercise and cognition, check out this great webinar by fellow Can Do MS Programs Consultant Mandy Rohrig, PT, DPT, and Robert Motl, Ph.D. For some resources on “brain exercises,” check out this article by Can Do MS Programs Consultant Pat Kennedy, RN, CNP, MSCN. This article on multiplesclerosis.net also provides suggestions for exercising your brainpower.

Answer by Mona Bostick, RDN, CSO, LDN – Registered Dietitian Nutritionist and Can Do MS Programs Consultant

Clinical studies suggest that flaxseed oil and other omega-3 fatty acids may be beneficial for a variety of conditions. However, there is no recommended dosage or regimen. With flaxseed oil, there are potential interactions to consider. It is best for any recommendations to come from a healthcare provider familiar with your needs and contraindications.

For more information on flaxseeds and other nutritional tips, check out this article by a fellow Can Do MS Programs Consultant, Aliza Ben-Zacharia, ANP, DNP, MS. Pharmacy Times also published an informative article on the potential benefits of flaxseed oil in MS.

Answer by David Jones, M.D. – Neurologist and Can Do MS Programs Consultant

As greater light is shed on Raynaud’s Disease, there have been an increasing number of blog posts and commentary from the online MS community connecting this disease to multiple sclerosis. However, I am not aware of evidence that would convince me of a relationship between the two. Raynaud’s Disease is a vascular disorder affecting blood flow reaction, often creating pain and numbness in fingers and toes. First, I would ensure that the symptoms you are experiencing are, in fact, Raynaud’s by asking your general practitioner or rheumatologist. Raynaud’s Disease- often referred to as Raynaud’s Phenomenon- is relatively rare, affecting between 3-5 percent of the general population worldwide. However, it is more prevalent in certain populations, namely young women between the ages of 15 and 40.

In addition to consulting your health care team, there are some valid resources online, including the Raynaud’s Association and the National Institute of Arthritis and Musculoskeletal and Skin Diseases.

Answer by Ben W. Thrower, M.D. – Medical Director of the Multiple Sclerosis Institute at the Shepherd Center and Can Do MS Programs Consultant

This is an excellent and timely question. Because Relapsing-Remitting MS (RRMS) is the most common disease course, it has received the most attention in the medical community. As such, people with progressive MS often feel left out. However, we are closer than ever to a tailored therapy!

On March, 29, 2017, the Food and Drug Administration (FDA) approved the first therapy specifically approved to treat Primary Progressive MS (PPMS). The recent approval of Ocrevus (Ocrelizumab) represents a milestone in the management of MS. While Ocrevus represents the 16th FDA-approved treatment option for relapsing forms of MS, it’s the first one approved for PPMS, which has long been the rebel of the MS family, refusing to play by the usual rules. PPMS is more common in men versus women and tends to have an older age at onset. Where up to 95% people with RRMS have abnormalities in the spinal fluid, only 50% of those with PPMS do. The typical course of PPMS is one of slowly progressive mobility issues.

Ocrevus will be given as a biannual intravenous infusion and appears to have a good safety profile. Although the exact mechanism of action is unknown, Ocrevus is known to modulate the activity of B cells in the immune system. This may ultimately affect how B cells coordinate the immune responses of T cells. It's always great to have more treatment options for managing MS, but to have the first approved option for the underserved PPMS community is truly special.

To learn when Ocrevus will be available – and if it’s an appropriate therapy for you - consult your neurologist. For more information, please read this Press Release from Genentech and call 1-844-OCREVUS.

Physical Therapist Response
Amanda Rohrig, PT, DPT
Physical Therapist and Can Do MS Programs Consultant


Thank you for your question! First, I must commend you on your amazing commitment to exercise and consistent physical activity! Wow! Way to go! I also commend your sensitivity and awareness to ensuring you participate in aerobic exercise, as it is an important component to a comprehensive exercise program. Furthermore, there continues to be a growing body of emerging research suggesting the value of aerobic exercise for people with MS for not only the health of our bodies, but also the health of our nervous systems (i.e. potentially slowing disease or influencing lesion burden).

Aerobic exercise, as I suspect you may know, involves increasing the activity of the heart and lungs. Aerobic literally means “requiring oxygen.” The recommended guidelines for people to achieve an aerobic exercise zone for the heart rate ranges from 60-85%. I generally recommend between 60-70% of the heart rate maximum. Heart rate maximum can be estimated by the following equation: 220-age=maximal heart rate. This number can then be multiplied by 60% and 70% for an estimate of your aerobic exercise zone. However, often it is helpful to use a 0-10 exertion scale versus heart rate, so you do not have to go to the trouble of measuring heart rate in the middle of exercise. So, you would reflect on how "hard you feel" yourself working; 0 equating to no effort and 10 is maximal effort. A good aerobic exercise effort would be 3-5/10 intensity. All that said, perhaps, you are actually working out at an aerobic intensity level.

Types of exercise that may be considered aerobic at the proper intensity would include (but certainly not limited to): walking, stationary biking, swimming (laps may be more effective for you), or rowing machines. If you find that overheating is a barrier to exercising at an aerobic intensity, then I would recommend potentially trying the pool, especially if the water is cold (NOT warm water pools). Other ways to keep your core temperature more moderate while you are exercising may include: 1) drink cold drinks while exercising 2) keep fans blowing directly on you throughout the workout 3) wear cooling products, such as cooling vests, wrist ice wraps, or ice packs around the neck/shoulders. 4) break-up your workout into two parts, allowing you the opportunity for your heat-related symptoms to subside, finishing the workout at a later time or once your symptoms are not as pronounced. Lastly, I would strongly encourage you to seek the individualized guidance from a PT who understands MS and can truly help you shape your exercise program to maximize your success. Good luck and happy exercising!


For more information on exercise, visit Can Do MS's extensive library of webinars and articles, including this article on endurance and aerobic activity.

Also, please join me, along with dietitian Mona Bostick, at the upcoming Can Do MS webinar ,"Weight Management and Nutrition," by registering here.


Answer by Mona Bostick, RDN, CSO, LDN - Registered Dietician Nutritionist

The simple answer to this question is no. Vitamin D is a fat-soluble vitamin and does not impact the absorption of (water soluble) vitamin C. In other words, both vitamins are important partners in a balanced diet, but they work independently and are processed differently. I would certainly discuss this balance with your health care team. High doses of vitamin D may be react adversely with other drugs. High amount of both vitamins have also been linked to increase risk for kidney stones. Unlike vitamin D, vitamin C is readily available in food and deficiencies are rare in developed countries; so supplementing is not commonly necessary. Talk to your doctor about your specific health and diet needs.

For more information on Vitamin D, read this response from Can Do MS Programs Consultants Baldwin Sanders, MS, LD, RDN and Barbara Giesser, MD, and this article by Pat Kennedy, RN, CNP, MSCN. To learn how vitamins fit into a balanced diet and their potential impacts on MS, read this article and view this webinar by Dr. Pavan Bhargava, MD. Finally, join me, along with physical therapist Mandy Rohrig, PT, DPT, at our upcoming webinar on nutrition and MS.

Occupational Therapist Response

Stephanie Nolan, OTR/L
Can Do MS Programs Consultant

I am sorry to hear about your increasing difficulty getting in and out of your shower, and am glad you asked for support. We want to always keep you as safe as possible, while at the same time conserving as much energy as you can. Here are some general suggestions that hopefully will create new ideas and successes. Please keep in mind that every person and every shower is different. For the best results, you should consult an occupational therapist to get specific guidance and prescriptions for your specific circumstances.

Typically, I recommend that people remove their glass doors and replace them with a shower curtain. I know this can be a lot of work and some people prefer not to make big changes. However, this will allow enough room to use a "Tub Transfer Bench.” This is one of my favorite shower safety tools. It's a bench that hangs a few inches over the edge of the shower lip just enough to allow you to sit on the edge of it, turn your leg in, and slide over into the shower. This completely eliminates the need to step over the lip of your shower, as well as the need to balance on one foot at a time while on a slippery surface. This bench is VERY helpful in preventing falls and injuries and runs between $60-130. You can find these at local pharmacies like Walgreens, RiteAid or CVS, as well as local hardware stores such as Lowes or Home Depot. You can also order it online at Amazon.com. Many churches and community centers also lend out these benches since most people who have had a knee or hip replacement use them for only a few months after their surgeries and then donate them. Here is a video of a few different techniques: https://www.youtube.com/watch?v=ckuZ4JoN8V4 .



Please be aware that there are weight limits on these benches of 250 lbs. However, there are also "Heavy Duty" versions for anyone over that weight. I usually recommend the ones that have suction cups at the bottom to stabilize it. However, if the bench needs to come in and out, it can often be more challenging for other shower users.

I hope this helps you with your shower transfers and makes you feel more safe and independent at home.

MS Patient and Freelance Writer

Judy Lynn

(This response is reprinted by permission and with gratitude from Multiple Sclerosis News Today.)

When my physiatrist diagnosed my MS “foot drop,” she wrote a prescription for vehicle hand controls. I was both elated and terrified. Could I drive long distances again? Arrive pain-free, able to do a short hike? Could I regain the freedom of knowing I would not have to cancel an outing because I couldn’t drive there? After many months of increasing limitations, I was giddy at the prospect of less pain and more freedom. BUT … What if I couldn’t do it? Maybe I would never get the hang of it … or worse, what if I got in an accident? I kept thinking about the time my grandmother hit the gas instead of the brakes and took out my uncle’s front porch!

I checked in with my State Department of Vocational Rehabilitation (DVR) caseworker (look into yours if you haven’t). DVR, along with the National MS Society, covered the nearly $3,000 for the lesson, certification, and installation because I use my car for work. They assessed my vehicle and my abilities and recommended “mechanical” hand controls. These can be turned off and on so that others can drive the car. (While there are costs to be considered and installation details will be different for each person and each automobile, getting hand controls can be quite easy!)…

I give you this history as a way to set the stage for my adoption of hand controls in my vehicle … a way to say, “If I can do it, believe me, you can too!”

Of minor importance

  • No one can see that you are using hand controls. Stop worrying about how it looks!
  • Yes, this does give you some “street cred” when using your handicap placard.
  • Improves muscle tone of triceps and forearms. (I take my perks where I can!)
  • You may need to chat less with your passengers, because new driving skills require greater concentration.
  • It’s OK if people think you are rude because you don’t wave back. Really, it’s OK.
  • You can probably beat that kid in the Mazda off the line… if you wanted to. Hand controls have some serious pick-up!

Of moderate importance

  • Put the car in park, or feet on the floor brake if able, while you exchange cash, ticket, etc., at drive-up windows or machines. (Both brakes always work.)
  • Take a drink of your coffee, change the radio station, or adjust windows or heat when you are in cruise control or stopped at a light.
  • Use whatever music technology you have. I mastered the car’s Bluetooth and my iPhone music playlists in order to avoid being trapped with crummy radio commercials.
  • Buy a water bottle with a pop-up top. No time to screw a cap back on when the light turns green!
  • Roll up windows before getting on the freeway. If you forget, just pretend you are a carefree youth until you get cruise control going. Hopefully there aren’t any loose papers in the back seat.
  • Park a little farther away from high-pedestrian areas. I’ve come to appreciate those handicap parking spaces that are not right in front of the door!
  • Turn signals, or indicators, are tricky. It depends on the placement of your hand controls and how far you have the accelerator pushed down. In the beginning, err on the side of turning it on early. I’m hoping for a voice-activated turn signal one day.

Of major importance

  • Master cruise control. It’s your best friend.
  • Always use your side mirrors and rear view mirror, and turn to look around you before backing up. I also roll my windows down a little and keep my music off. I used to turn and look over my shoulder while backing up, but this doesn’t work with a hand control.
  • Watch your speed. The hand accelerator requires less force than a foot pedal.
  • Leave lots of space between you and other cars.
  • Don’t be afraid to pull over and regroup. Maybe you need to adjust the heat, turn off that Kenny Loggins song, scratch an itch, blow your nose, or eat a couple of almonds. You may have to pull over to do these things safely.
  • Believe in yourself!

It took a few months, but eventually my mechanical hand controls became my new normal. The instructor was right, I’m a natural! And so are you! If you need hand controls but have been afraid to try them, please reconsider. And if you have used them yourself and have some tips for me, please share!

Judy’s two articles on hand controls, as well as other great resources, can be accessed on the Multiple Sclerosis News Today website, https://multiplesclerosisnewstoday.com/).

Answer:

Rehabilitation Psychologist
Abbey J. Hughes, PhD

Thank you for your question. You raise one of the most difficult aspects of treating sleep disturbance in MS: how to manage the multiple aspects of MS when the treatment for one symptom (increased hydration to avoid falls) can impact another symptom (increased nocturia, or frequently waking to use the bathroom at night).

Treatments for nocturia generally fall into 4 categories: (1) lifestyle/diet changes, (2) physical therapy, (3) catheterization, and (4) medications. I'll briefly summarize each below, but I recommend that you first start with a daily log to record your daily fluid intake and nighttime urination patterns. Each day, write down (or keep track using a spreadsheet or "app") each time you drink a beverage, what you drank, what time you drank it, and how much you drank. During the night, keep track of each time you wake up, how strong the urgency is to urinate (on a scale of 1-10, with 10 being the strongest), and approximately how much you urinate (no need to measure exactly, just take note of whether the volume is small (few drops, less than a couple oz), medium (a few to several ounces), or large (more than several oz). When you keep track of this information each day for 1-2 weeks, it can be very helpful information to share with your doctor.

It is important to try to determine the cause of your nocturia. MS can cause neurogenic bladder, a neurologic condition which may be contributing to the symptoms you are describing; however, other causes other than MS may also be contributing, including urinary tract infections, benign prostatic hyperplasia (for men), aftereffects of childbirth or menopause (for women), and others. Meeting with a urologist can help rule out these possible causes.

With regard to lifestyle/diet changes, changing the timing of your fluid intake can help reduce the number of nighttime awakenings. For example, if you try to drink 64oz (8 cups) of water per day, try to finish drinking that amount at least 2 hours before you go to bed. If you need to drink a few sips of water closer to bedtime to keep your mouth from getting dry or to take medications, that's fine. The point is to not go to bed with a full bladder. Second, emptying your bladder right before bed as part of your bedtime routine is important. Another lifestyle/diet change is to reduce or eliminate caffeine from your diet. Caffeine increases the production of urine and contributes to dehydration. Limiting caffeine and trying not to drink any caffeinated beverages within 6 hours of bedtime can help reduce nocturia. Working with a rehabilitation psychologist or health psychologist may help you to identify and adjust your health behaviors to reduce your nocturia.

With regard to physical therapy, sometimes the nerve signals that travel to the bladder become disrupted in patients with MS. As a result, the bladder muscles become weak. There are a number of exercises (try searching "Kegel exercises" on the internet) that can help strengthen the muscles that control urination so that you don't feel the urgency to urinate quite as strongly or as frequently. Your doctor (primary care doctor or neurologist) can also refer you to a physical therapist to provide additional exercises that may help.

Catheterization is an additional option that may help with your bladder management. There are different types of catheters depending on your preferences and medical history, which you can discuss with your doctor. "In-dwelling" catheters can be inserted and managed yourself. The catheter is connected to a tube which connects to a collection bag. "External" catheters are worn outside the body and collect urine. They attach to the body with a condom-like (for men) or funnel-like (for women) device and connect to a tube and collection bag. There are advantages and disadvantages of in-dwelling and external catheters. Talking to your doctor about your personal factors like your mobility and risk of infection are important to determining which device may be best for you.

Finally, there are a number of medications that can be used to treat overactive bladder and nocturia. As with any medication, it is important to consider whether the potential side effects outweigh the benefits, particularly given that you may be taking a number of other medications to treat other MS symptoms. Talking to your doctor about whether a medication such as an anticholinergic may be indicated. Ultimately, what works for each person with MS may differ based on the type and severity of your symptoms, your lifestyle, your other medications, and how open you are to making lifestyle changes (sometimes several concurrent changes).

Most importantly, know that you are not alone in these symptoms and one or a combination of the treatments described above can help to improve your symptoms and quality of life. For additional reading, the Can Do MS team has a great article on bowel and bladder issues (http://www.mscando.org/living-with-multiple-sclerosis/can-do-library/ms-education/bladder-bowel-issues), and the National MS Society Website (www.nmss.org) has additional resources for bladder issues, including nocturia.

Answer:

Adaptive Yoga Instructor
Founder of Bamboo Yoga Studio
Ann Richardson

I am so happy to hear you are interested in yoga. Unfortunately, there isn't a database for MS yoga instructors. Yoga Heals Us has a nationwide list of adaptive yoga instructors at http://www.yogahealsus.com/gpage3.html. I would also check with your local MS centers, support groups, physical therapists, etc. The staff at Studio Bamboo can also direct you to some great resources by emailing info@studiobambooyoga.com.

For more information on the benefits of yoga and multiple sclerosis, this article by Victoria Swajcer, BSCPT, is available on the Can Do MS website, www.mscando.org.

Answer:

Physical Therapist
Amanda Rohrig, PT, DPT

Can Do MS Programs Consultant

Serving as a caregiver/support person for someone you love can be a truly joyful blessing that can offer many benefits to both parties. It is also a responsibility that, at times, have heavy tolls- physically, emotionally, and mentally- even though you feel proud of the role you play in your loved one’s life. You may find yourself experiencing a wide range of emotions as you adapt to the day-to day variability of this unpredictable disease. Knowing when to help and how to help when changes occur can be challenging. Despite your questions and concerns, please remember your attention and care make a huge difference!

First, I would recommend having an open conversation with the person for whom you are caring. Confirm that she is experiencing what you are observing. Then, potentially together, consult with her health care team (especially a physician or MS nurse) to determine if there are any appropriate and/or necessary changes that need to occur with the medical management of her MS, as well as a request for a prescription for physical therapy. A consultation with a physical therapist who understands MS can help to identify abilities and areas of improvements. For example, there may be alternative bracing or mobility devices in combination with specific exercises that may be helpful. Often, implementing some key fatigue management strategies or environmental changes can help, too. Most importantly, identifying when to help versus when to empower the person with MS to do an activity or exercise independently is key to strengthening mobility and for both of you to live well with MS.

In conclusion, seek that consultation with a physical therapist to help both of you learn to optimize exercise and mobility. In the meantime, consider education and investigation into some of the online resources from Can Do MS (there are some excellent webinars and articles pertaining to exercise, flexibility, and mobility are available on the CDMS website, www.mscando.org) and the National MS Society (www.nationalmssociety.org). I would encourage you to explore the Stretching for People with MS as well as the Stretching with a Helper for People with MS manuals from the National MS Society. These 2 resources would be appropriate to bring along to a physical therapy session. With the help of a PT, you and your loved one can identify and prioritize those that may be appropriate for your situation. Thank you for your question and best wishes for health, wellness, and happiness!

Finally, join me and renowned psychologist Roz Kalb, Ph.D., at the upcoming Can Do MS webinar on support partners. This free, interactive presentation will offer some great suggestions on the types of questions you are presenting here, and will connect to MS care experts that can provide support, as well as other caregivers going through similar situations. You can register for this webinar, broadcasting live at 8pm Eastern on Tuesday, October 11 (if you cannot attend live, the webinar will be archived and available to stream at your convenience), by completing this brief online form.

Neurologist Response

David E. Jones, MD
Can Do MS Programs Consultant

Thank you for this very important and timely question. While this research is still growing, there does appear to be a correlation between EBV and MS. Almost everyone with MS has been exposed to EBV, and it appears later exposure to this virus may be a risk factor for developing MS. There has also been some studies suggesting that Epstein Barr DNA may be found along the surface of brains that have had MS for a long time, but these studies are small and I think that this finding is still somewhat controversial.

The National MS Society cited several studies by the Harvard School of Public Health that suggest EBV is involved in MS. The studies found that:

  • Antibodies (immune proteins that indicate a person has been exposed) to EBV were significantly higher in people who eventually developed MS than in control samples of people who did not get the disease.
  • MS risk increased significantly following infection with EBV, thereby demonstrating that EBV was in the body before MS developed.
  • People with a specific immune-related gene and high levels of antibodies to EBV in their blood were nine times more likely to develop MS than those without the gene and with low levels of the antibodies.
  • Current or previous smokers with the highest levels of EBV antibodies were 70 percent more likely to develop MS than those with neither risk factor.

Ultimately, the cause of MS is still unknown, but we are learning a great deal about the environmental factors that may contribute to increased risk. Across the board, the new research about MS is very exciting and encouraging. To learn more about some of the latest developments in MS research, I would recommend viewing this webinar by fellow Can Do MS Programs Consultants John Schafer MD, FAAN, Meghan Beier, PhD, and Abbey Hughes, PhD.

Answer:

Occupational Therapist
Stephanie Nolan, OTR/L
Can Do MS Programs Consultant

Hello Marla! First off, I am sorry to hear that you are struggling with transfers to your toilet. Using the bathroom independently is very important when people are trying their best to maintain their dignity and I hope I can provide some helpful advice. Sadly, it sounds like your wheelchair limits the chances of using a slide board for transfers which would have been my first recommendation. One thing you may consider is finding out if your chair is able to be changed or adjusted. Is it a custom fitted wheelchair or a standard chair? In many states and with many insurances the standard wheelchairs are 'rent to own'. If that is your case and you do not own it yet, you could consider contacting the company to find a chair that would fit your needs better. If it is a custom fit chair you could also contact the provider of that chair and ask what options they can offer to modify your chair because it no longer accommodates your physical needs.

If neither of those options work, here is another solution: I have helped some people transfer to their toilet forward with a grab bar placed at the back of the toilet. This would require removing lower body clothing prior to the transfer which does take more energy (some women choose to wear skirts and velcro underpants or briefs to make this easier). I know it sounds strange but it works very well for some people as long as there is a little strength in their legs to push up and clothing management isn't too challenging for you. This is how it would work- Line your chair up to the toilet facing it and get as close as you can with your knees apart. Remember to lock your breaks. Place your feet on either side of the toilet and scoot as far forward in the chair as you can. Take hold of the grab bar behind the toilet. Push up with your legs and pull forward with your arms toward the toilet seat. This will result in you sitting straddled over the toilet facing the back wall. Coming back off the toilet may be more of a challenge depending on your strength and the position of the arm rests on your chair. Reach behind you to the arm rests and push up while you use your legs to push back toward the wheelchair. At this point you will be able to put your clothing back on. I would suggest trying this with a family member who is able to assist the first few times while wearing a gait belt for safety. It will take time and practice to make this type of transfer smooth, but it does work well for some people.

Not seeing your posture, strength, endurance and environment makes it a little more challenging when trying to determine the best/safest option for you, but I sure hope this helps you be more independent at home. If this doesn't work, I suggest seeking an occupational or physical therapist in your area if it is within your means. An OT or PT, especially ones with a background in MS, could further assess your home setup and your physical needs for other transfer options.

Answer:

George Jelinek
Professor and Head of the Neuroepidemiology Unit (NEU)
Melbourne School of Population and Global Health, University of Melbourne
Founder of Overcoming Multiple Sclerosis

(This response is reprinted by permission and with gratitude from OMS's Newsletter Archive.)

It’s probably one of the lesser-reported symptoms of MS, but a research team at the University of Pennsylvania’s Smell and Taste Center has concluded that there is a high incidence of poor ability to identify taste by people with MS.

Little had previously been known or studied regarding the relationship between taste and MS, although former research estimated that between 5 to 20% of people with MS experienced some kind of taste dysfunction. However, the article Taste Dysfunction in Multiple Sclerosis, published in the Journal of Neurology, concludes that not only are taste deficits more common than previously realized, but that the extent of this dysfunction correlates with the amount of damage in the brain, as revealed by MRI scans.

The study’s aim was to assess the ability to identify bitter, sour, sweet and salty tastes on different regions of the tongue, and compared 73 people with MS to 73 people without the condition across a 96-trial test of the four tastes, recording a ‘dysfunction’ when taste recognition was below the fifth percentile of the control group. For the MS group, salt appeared to be the hardest taste to appreciate, with 31.5% falling below the normal level. Twenty-five percent had trouble recognizing a sweet flavor, 22% with sour, and 15% with a bitter taste.
Furthermore, the researchers were able to identify that the taste scores were inversely proportional to the amount and volume of lesions which were evident on MRI scans of the different brain regions.

The study’s lead author and director of the Smell and Taste Center, Dr. Richard Doty concluded that “This study represents the most comprehensive study performed to date on the influences of MS on the ability to taste. It appears that a sizeable number of these patients exhibit taste deficits, more so than originally thought. This suggests that altered taste function, though less noticeable than changes in vision, is a relatively common feature in MS. These findings give us a better insight about the areas of the brain that are more likely to impact the dysfunction when scarred from the disease.”

A consistency between the groups with and without MS was that women fared better on the tests than men – a result attributed to the fact that women have more taste buds than men.
This article, along with other great resources, are available on the Overcoming Multiple Sclerosis website, https://overcomingms.org/.

Answer:

Nurse Practitioner
Stephanie Buxhoeveden, MSCN, MSN, FNP-BC
Can Do MS Programs Consultant

Yes, leg pain among MS patients is common. The pain you feel from MS can come from different places in your body. It can be due to damaged neurons in your brain and spine, or it can stem from your bones, joints, and muscles. One of the most common MS symptoms is spasticity, where brain lesions cause certain muscles - often in the legs - to continuously and involuntarily contract. Burning or aching sensations in the legs are also common in MS. Often times, pain that you may think is caused from MS may actually stem from an unrelated ailment such as a lower back injury. Management and treatment of your pain will depend on the cause.

I'd need a lot more information to narrow down what could be causing your particular pain. If this is a new symptom, you should contact your neurologist to rule out a relapse. If it is a worsening MS symptom, it would need to be treated with steroids. If this is an old, more chronic problem, it could possibly be treated with Gabapentin or another similar medication. You should definitely consult with your health care team to find the source of your pain, as well as the best courses of action. It is important to take action and not suffer in silence!

For more information on pain, spasticity, and other “invisible symptoms,” please visit the Can Do MS website, www.mscando.org, which has an extensive archive of webinars and articles.

Answer:

Physical Therapist
Sue Kushner, MS, PT
Can Do MS Programs Consultant

Massage therapy can be a wonderful and useful tool in the “MS toolbox.” The benefits can range from relaxation, stretching of muscles, relief of “trigger points,” alleviating sore muscles, and helping with muscle imbalances. Due to the variety of symptoms that MS can cause, the benefits may vary from person to person.

Asymmetrical changes in the body may occur from tightness, weakness, sensory changes, or spasticity. In any of the cases, the resulting pain may be reduced with massage. Posture is often affected by these MS symptoms, which is another area that massage can prove to be beneficial. Soreness form overcompensation and/or use of assistive devices may also lead to musculoskeletal discomfort that can be lessened through massage.

As a massage therapist, my biggest advice would be to be careful of spasticity. Massage can provoke spasticity if not done properly. If the massage therapist knows MS and is familiar with spasticity, they will be able to gauge tight areas, amount of pressure to be used, and also know when an area should be avoided. The National MS Society has wonderful resources that can educate you on spasticity. With your MS clients, I would make sure to go easy for the first visit or two, and be cognizant of asking for feedback.

Here are some resources on massage and MS that may be helpful:

http://www.nationalmssociety.org/Treating-MS/Complementary-Alternative-Medicines/Massage-and-Body-Work

http://www.massagetoday.com/archives/2002/03/15.html

https://www.abmp.com/textonlymags/article.php?article=562

Answer:

Registered Dietitian
Baldwin Sanders, RDN
Can Do MS Programs Consultant

Magnesium is a mighty mineral that is a co-factor in more than 300 enzyme systems that regulate biochemical reactions, such as protein synthesis, muscle and nerve function and blood pressure regulation. 50 to 60% of the body’s magnesium is present in the bones and contributes to structural development. Magnesium is widely distributed in plant and animal foods. Green leafy vegetables, beans, nuts, seeds, and whole grains are good sources. Magnesium is the primary ingredient in many remedies for acid indigestion (i.e. Rolaids) and laxatives (i.e. Milk of Magnesium). Therefore, you may run into problems if you consume too much magnesium.

Magnesium deficiency due to low dietary intake is rare. Deficiencies may result from some health conditions, chronic alcoholism, or the use of some medications such as diuretics. Gastrointestinal diseases such as Crohns, Celiac disease may lead to a deficiency due to malabsorption. Signs of a magnesium deficiency can be fatigue and weakness, numbness, muscle contractions and cramps, tingling, headaches and abnormal heart rhythms - symptoms that are also seen in neurological diseases like MS.

There is little research investigating magnesium and MS. There is one study that suggests magnesium oral therapy has “significant improvement” on spasticity in MS with no side effects. By addressing magnesium deficiencies, you may also see improvement in muscle spasms, weakness, twitching, muscle atrophy, incontinence, vision and hearing issues, osteoporosis, and epilepsies.

A good diet is the best way to consume magnesium. However, magnesium supplements are fairly well tolerated and safe, but will probably provide little relief to your MS symptoms. I would consult your doctor or dietitian before taking supplements. If they are suggested, beware magnesium supplements come in a variety of forms, including aspartate, citrate, lactate, chloride, oxide and sulfate. I would recommend the aspartate, citrate, lactate and chloride forms, as they are absorbed more completely and are more biodegradable than the oxide or sulfate forms. Magnesium supplements may also interact with some medications, and may reduce the absorption of biophosphonates, such as Fosamax, and antibiotics. Antibiotics should be taken 2 hours before or after magnesium supplements.

For more information on supplements, there are some great resources on the internet, including this brochure by the National MS Society. Thank you for submitting your question!

Answer:

Speech-Language Pathologist
Pamela H. Miller, MA, CCC-SLP
Can Do MS Programs Consultant

Yes, there are some treatment strategies, but here is a little background first:

The esophagus is the tube that moves food from the throat to the stomach through coordinated, smooth muscle contractions. When you swallow, there is an Upper Esophageal Sphincter (UES) that must relax to allow the food to first enter the esophagus, and a Lower Esophageal Sphincter (LES) that must relax to allow the food to then empty into the stomach.

Esophageal spasms are abnormal contractions that are irregular, uncoordinated, and sometimes powerfully painful. These spasms can result in food getting stuck during swallowing. They may prevent it from even entering the esophagus and/or ultimately reaching the stomach. People may describe difficulty or pain when swallowing (often triggered by very hot or very cold foods), the feeling that food is caught in the center of the chest, a type of chest pain that may spread outward to the arms, back, neck, or jaw (similar feeling to a heart attack) and/or a burning sensation in the chest (heart burn). It is important to inform your doctor of these symptoms so that the proper diagnostic procedures and treatments may occur. Cardiac assessment is sometimes necessary. A radiologist can perform a barium swallow to rule out gastroesophageal reflux disease (GERD) and assess esophageal motility. A referral to a gastroenterologist may be suggested.

How are esophageal spasms treated?

  1. Reflux can trigger esophageal spasms. If Gastroesophageal Reflux (GERD) is diagnosed, specific changes to diet and lifestyle, plus taking reflux medicines which reduce the back flow of food and stomach acid, are recommended.
  2. Modification of foods and liquids may make swallowing easier: Softer, moister, not too hot or too cold. Smaller, more frequent meals. Sips of liquid (Not large gulps).
  3. Possible dilation to carefully expand any narrow areas of your esophagus (which may be needed more than once a year).
  4. Medicines to directly relax the muscles in the esophagus. Sometimes botulinum toxin is suggested.
  5. Relaxation techniques and treatment for possible anxiety or panic attacks, which may worsen/trigger esophageal spasms. For tips on managing anxiety, please view the, Workout Your Worries: Anxiety, Exercise, and MS, by visiting the Can Do MS website, www.mscando.org.

For more information on swallowing and throat care, please also read this article and webinar by two of my fellow Can Do MS consultants, Janet DeClark (speech-language pathologist) and Baldwin Sanders (registered dietitian).

Answer:

Editor of Emerging Horizons, Author, and Travel Expert
Candy Harrington

Air travel can certainly be fatiguing. Sometimes, the hardest part is just getting to the plane! Here are some tips to make checking-in and getting through security easier, less tiring, and less frustrating. In addition to referring to my tips from the Accessible Travel Basics webinar, which is available to stream from your home computer, here are some ideas to consider when facing the TSA checkpoint:

  • You don't have to take off your shoes if you’re physically unable to do so.
  • You are entitled to private screening.
  • You can take your liquid meds through the checkpoint (even if you have more than 3 ounces), but you need to inform the screener in advance.
  • If you can't do something during the screening, then just tell the agent you are physically unable to do it.

Also, here are some resources that you should consult when planning your travel. Don’t be afraid to ask questions!

TSA Website
Outlines the screening process for passengers with a disability.
www.tsa.gov/travel/special-procedures

TSA Care Hotline
Call at least 72 hours in advance for airport specific security questions and concerns.
(855) 787-2227

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Answer:

Nurse Practitioner
Gail Hartley, MSN, NP, MSCN
Can Do MS Programs Consultant

Approximately 25% of people with MS are 65 and older. Therefore, we in the MS care field often focus on this age group. Many patients will ask "is it my MS or am I just getting older?" It's a good question to ask, and one that is not always easy to answer since MS and aging share many of the same symptoms. For example, as we age, our vision may change. But that is usually correctable with glasses, whereas optic neuritis (damage to the optic nerve) generally is not. Likewise, as we age, there may be changes in cognition, strength, balance, or bowel/bladder control. MS can cause similar challenges, but there are often subtle differences in the experience and sometimes in the treatment.

It is most important, however, not to jump to a conclusion and say "it’s just my MS" or "I'm just getting old." When you notice changes, this is the time to check-in with your health care provider. Your symptoms might be the result of a health issue completely unrelated to MS or aging--and you don't want to miss that! A careful assessment of your symptoms and appropriate medical tests are essential to making an accurate diagnosis and treatment plan. Then, focus on wellness. Take control of the things that you can do to stay healthy like eating a balanced diet, exercising regularly according to your ability, getting adequate sleep, and keeping a positive attitude.

For more information, please read this article that I co-authored with a fellow programs consultant, Terri DiLorenzo, Ph.D, and view our webinar, Aging with MS.

Answer:

Physical Therapist
Sue Kushner, MS, PT
Can Do MS Programs Consultant

Exercise can have positive effects on lesion prevention because of "neuroplasticity," the amazing ability of the body to form new neural connections through repetitive practice of physical and cognitive tasks. It is sometimes described as remapping and can show improvements in patients’ cognitive and physical functioning. One of the best articles that I like to reference, and that we often mention at Can Do MS, is by LJ White and V. Castellano in "Exercise and Brain Health-Implications for Brain Health-Part 1: Neural Growth Factors" in SPORTS MEDICINE, 2008, Vol 38, issue 2, pp. 91-100. It goes into detail about how exercise not only helps with the physical factors that we know (strength, cardiovascular fitness, etc.), but also assists with neuroprotection, neuroregeneration, neurogenesis and neuroplasticity. Therefore, quality of life can be enhanced. The article also touches on the effects of exercise on the inflammatory process. Another interesting article is by I. Lipp in FRONTIERS IN NEUROLOGY , 2105, Vol 6, pp 59-64. Titled "Neuroplasticity and Motor Rehab in MS." Somewhat similar info, but mentions factors other than exercise.

Answer:

Victoria Leavitt
Assistant Professor of Neuropsychology
Multiple Sclerosis Clinical Care and Research Center
Columbia University Medical Center

To our knowledge, there is no published evidence to suggest that persons with progressive MS run low fevers more frequently than healthy individuals. What has been extensively studied in people with MS, however, is temperature sensitivity. This work dates back to 1889, when the German ophthalmologist Wilhelm Uhthoff noticed that his patients with MS experienced worsening of their visual symptoms after hot baths and exercise. Uhthoff's phenomenon, which describes symptom worsening that accompanies heat exposure, has subsequently been well described in the literature, with descriptions of the many symptom types shown to be aggravated by heat: physical symptoms, gait, balance, cognition, mood, and fatigue, among others.

Two years ago, we built upon this work by providing an interesting new piece to the puzzle: we noticed for the very first time that not only does heat exposure have a negative effect on people with MS, but people with MS have higher baseline body temperature than healthy people to start with- and this small body temperature increase was linked to worse fatigue. Our finding was specific to relapsing remitting patients; we have not looked at primary progressive patients. And the elevation was very small- about half a degree Fahrenheit. So this does not begin to approach the level of a fever, or even a low grade fever. However, we did find that there is a consequence of the higher body temperature, worse fatigue.

Our finding changed the way we think about Uhthoff’s phenomenon. Now, instead of just considering the ways that heat exposure may be bad for people with MS, we started thinking about the processes that may be disrupted by always having slightly warmer body temperature. We know that many basic physiological processes are temperature dependent. Moreover, the body's thermoregulatory system is very finely calibrated, overseen by the hypothalamus- a small structure deep within the brain that serves as the body's thermostat.

At present, we do not know why body temperature is elevated in people with MS. We do not know if it is a cause or a consequence of the disease. But we do know that it seems to be related to the heat sensitivity that so many patients experience and describe, and we are devoting a great deal of research attention to understanding, and - most importantly- developing treatments to reduce the negative impact of elevated body temperature.


Occupational Therapist’s Response

Ann Mullinix, OTR/L
Can Do MS Programs Consultant

Occupational therapy’s main goal is to keep people performing the activities that are important to them, modifying or adapting as needed. When fatigue is a roadblock, we instruct strategies to overcome the barriers, allowing more success and accomplishment. We all know how important exercise is for our overall health and wellness, and it is an important ingredient to also fight fatigue. Making exercise a priority is essential for fatigue management!

  • One of the first steps and most important in preventing or lessoning fatigue is to schedule your daily routine. Exercise during the time of day when you have the most energy. Are you able to exercise in the convenience of your home, watching a video of seated aerobics, use an arm exercise bike, or perform strengthening exercises given to you by a licensed therapist or from a CAN DO Program? Exercise can occur in many different ways. If we let go of some traditional ideas of exercise, and realize performing chair push ups or moving arms at or above heart level for a 30 second to 1 minute period of time, can get the heart beating, blood pumping and feel good. The National MS Society and your local chapter have resources for local exercise classes and videos for home.
  • If you have access to a class, make sure it is a good time for you. Choose a time that will not be stressful to travel to (stress adds to fatigue and traveling takes energy).
  • Make sure you take a look at your expectations of exercise. Are you exercising for a too long period of time? Trying to do it too many days of the week? A trained therapist can create a program for you to adjust to your level of function.
  • For some people, heat can be an issue when trying to exercise, and wearing a cooling vest, or having a cool cloth can help keep your temperature down.
  • Having a partner in exercise can help us stick to our goals or routine by keeping us motivated, make it more enjoyable and fun, and also can assist with some movements.
  • Make sure exercise is engaging for you, and that you are accepting of where you are at; with what your body is allowing you to do that day. Frustration only zaps our energy, and makes us feel defeated.
  • After exercise, rest. Allowing for rest breaks in your daily routine, 20-30 minutes, can re-energize and prevent fatigue from taking control.
  • Being open to change, modifying your exercise routine, simplifying yet not compromising the effects for your health, these are important strategies to not let fatigue interfere with your goals of exercise.

Neurologist’s Response
Barbara Giesser, MD
Can Do MS Programs Consultant


People living with multiple sclerosis who experience disease progression resulting in limited mobility are at risk for some complications. They include deconditioning, decreased cardiovascular function, bone loss (osteoporosis) and blood clots. Because of this, it is important for you to try to exercise as much as is possible.

For those individuals who cannot use their legs, you can participate in aerobic exercise with a hand cycle. Standing and weight bearing is also exercise, and for you since you cannot stand unaided, this may be accomplished with a standing frame. Stretching is also important to decrease spasticity, prevent contractures and maintain flexibility, and may be done with a helper, if you cannot do it independently.

Physical Therapist’s Response
Mandy Rohrig, PT
Can Do MS Programs Consultant

First, I would encourage you to get connected with a rehabilitation specialist (Physical Therapist or Occupational Therapist) who can help you prioritize exercises of greatest value, so that you are not exerting unnecessary energy on activities that are not providing you benefits to your overall function. With your therapist, I would encourage you to set realistic goals so you know what you are working towards and why you are working towards it. Having goals improves adherence to the exercise program, making it more likely for you to be successful!

Often it is thought that all exercise has to occur during 1 session. However, considering that fatigue is a significant issue for you, you may find it beneficial to complete smaller, incremental bouts of exercise intermittently throughout the day. For example, flexibility exercises with a support partner when it is convenient for him/her in the evenings and strengthening activities for the arms in the morning when you may be less fatigued. If you are unable to get to a gym and do require some assistance to effectively complete exercise, consider discussing with your health care team about resources that could come into your home to help with exercise. For example, a rehabilitation professional could instruct a college student or physical therapy student how to properly help you with exercises.

Since you use a power wheelchair for primary mobility, it becomes increasingly important to have a consistent flexibilityroutine. Prolonged sitting can exacerbate muscle tightness and spasticity. Consider referring to the National MS Society for a partner stretching manual; also, www.mymsyoga.com is a nice resource for adaptive yoga poses. Remember, these poses can be adapted even more for you in a seated or laying down position! I would also strongly encourage you to adapt a consistent aerobic exercise routine. Arm bikes or pedal exercisers can be purchased for around $30-$80 and can easily sit on a table. Strengthening activities for the arms can be completed with soup cans or elastic bands. Lastly, consider regular standing with assistance from walkers or standing frames. Regular standing is beneficial for muscle strength and flexibility as well as esteem. Consider the Multiple Sclerosis Association of America or National MS Society for assistance for funding of exercise equipment and discuss your needs with your health care team as insurance may help, too.

Nurse Practitioner Response

Gail Hartley, MSN, NP, MSCN

Can Do MS Programs Consultant


Therefore, we in the MS care field often focus on this age group.Many patients will ask "is it my MS or am I just getting older?"It's a good question to ask, and one that is not always easy to answer since MS and aging share many of the same symptoms.For example, as we age, our vision may change.But that is usually correctable with glasses, whereas optic neuritis (damage to the optic nerve) generally is not.Likewise, as we age, there may be changes in cognition, strength, balance, bowel or bladder control.MS can cause similar challenges, but there are often subtle differences in the experience and sometimes in the treatment.

When you notice changes, this is the time to check-in with your health care provider. Your symptoms might be the result of a health issue completely unrelated to MS or aging--and you don't want to miss that! A careful assessment of your symptoms and appropriate medical tests are essential to making an accurate diagnosis and treatment plan. Then, focus on wellness. That is, take control of the things that you can do to stay healthy like eating a balanced diet, exercising regularly according to your ability, getting adequate sleep, and keeping a positive attitude.

For more information, please read this article that I co-authored with a fellow programs consultant, Terri DiLorenzo, Ph.D, and view our webinar, Aging with MS.

Employment Specialist Response

Christina Foster, MA, CRC

Employment Services Manager for the National MS Society


First, if your insurance covers it, you may want to ask your neurologist for referrals to a neuropsychologist for cognitive testing to address your cognitive and memory issues. These referrals can help provide you with a baseline to determine your current functioning and to make some initial recommendations of techniques or tools that can help reduce the impact of this impairment at work.

There is a free and confidential resource called the Job Accommodation Network (JAN) that provides information about accommodations to employees and employers as well. There is a wealth of information on their website http://askjan.org, and you can also call them at 1-800-526-7234. They have an article specifically for individuals with MS: http://askjan.org/media/MS.html

In order to request accommodations, you would need to disclose to your current or future employer. The National MS Society has a publication with great information called The Win-Win Approach To Reasonable Accommodations (http://www.nationalmssociety.org/NationalMSSociety...).

There is also a great deal of information on the topic, such as who to tell, when to tell, what to tell and how to tell which can be found here: Disclosure Decisions (http://www.nationalmssociety.org/Resources-Support...).I also wrote an article on employment and MS for the Pennsylvania Keystone Chapter’s MS Connection Newsletter at https://issuu.com/westernpa_nmss/docs/winter_2016.

For more information you can contact the National MS Society at 1-800-344-4867 or ContactUsNMSS@nmss.org.

Nurse Practitioner Response

Stephanie Buxhoeveden, MSCN, MSN, FNP-BC

Can Do MS Programs Consultant


Abnormal sensations, known as paresthesias, are a very common symptom of MS. They are caused by lesions that disrupt the nerve’s pathway. The shock-like pain you are describing is a classic sign of neuralgia, or pain that originates from damaged nerves. In addition to the sharp pain you described, damaged nerves can also cause burning, tingling, “pins-and-needles” type sensations, numbness, hyper-sensitivity, and even itching. These symptoms can occur anywhere in the body, depending on where your lesions are.

Often nerve pain that occurs during a relapse will get better, and even resolve, over time as you recover. If you do continue to have pain or bothersome sensations there are treatments that can alleviate your symptoms. Your provider can talk to you about using anti-seizure medications, such as Gabapentin and Tegretol. These medications calm down the nerves that are misfiring, and they can provide relief from neuralgia.

You may also notice your symptoms get worse if you get overheated. Be sure to stay well hydrated and keep as cool as possible while exercising or if you are outdoors on a hot day. For good tips on avoiding overheating, check out this article written by a fellow Can Do MS Programs Consultant:Heat Management for MS.

Registered Dietitian Response

Baldwin Sanders, MS, RD, LDN

Can Do MS Programs Consultant


Cow’s milk and dairy products made from it are excellent sources of calcium, vitamin D, and protein.All contain the same amount of these nutrients, but vary greatly in fat and calories. Dairy milk comes in whole, 2 percent, 1 percent, skim, and lactose-free. By using skim or 1%, you cut out a significant amount of calories (up to 70 calories per cup) and saturated fat. Versions of plant-based milk have become quite popular – soy milk, almond milk, and rice milk. These may be good choices depending on a person’s diet, health, nutrition requirements, and allergies. Soy milk is a popular choice for vegetarians, especially vegans and those who are lactose intolerant. It is free of cholesterol, low in saturated fat, and contains no lactose. When it is fortified, it is a good source of protein, calcium, Vitamin D, and Vitamin B 12. Avoid the flavored soy milks to cut back on sugars. Almond milk is the lowest in calories, but also lowest in protein and calcium. This is a concern for those at risk for osteoporosis. It is low in cholesterol and saturated fat, as well as lactose-free. Rice milk is made from white rice and water.It is the least allergenic of these products, but it is very low in protein and calcium and very high in carbohydrates. It is the least desirable choice for those with diabetes or people who need more protein, such as athletes or elderly people. Although these options can seem frustrating, each have nutritional values and deficiencies.Choose the best beverage for your diet.To help develop a diet that works best for your particular needs, please consult a dietitian or nutritionist. There are also tons of resources online to help people with MS make good dietary decisions, including this article I wrote: Healthy Eating Made Simple.


Bed mobility is often impacted by the type of bed or mattress you have and the amount of access space around the bed.

A suitable bed height would be 18 inches as it is similar to most chair heights. Your height or the height of your mobility device might play a role in what works best for you as moving along an even surface is the most efficient way to transfer. If you need to raise the height of your bed, you can purchase bed frame height extenders at many local stores and on-line. Ensuring you have adequate room around the bed and, most importantly, on the side where you enter and exit, eases transfers. Consider a queen or full sized bed over a king for more space in your room. Remove clutter and excess furniture to improve access to your bed. If it’s only you sleeping in the bed, it’s okay to move the bed closer to the wall to give you greater access on the side you use. Your mattress selection can also impact bed mobility. If your mattress has a pillow top or is a tempur-pedic foam that conforms to your body, it can be more difficult to roll or shift in bed. A plush or firm mattress offers a more stable surface to move on. Sleep number mattresses and adjustable beds allow you to change the firmness or shape of the bed, but can be cost prohibitive for many.

There are adapted devices that aid in moving in, out and around in bed. The key is finding the device that works for your situation. Bed assist bars or transfer poles help when getting in and out of bed, and moving from lying to sitting. Bed pull-up straps or ladders aide in pulling up and moving in bed. These aides come in many different sizes and varieties and can be found in medical supply stores and on-line.

To find a bed and mattress that meet your particular needs, please consult an Occupational Therapist, Physical Therapist, or sleep specialist. Professionals on your health care team are the best resources to find the best solutions to overcome your particular challenges.

For more information, please follow these links to articles on adapting to your home with multiple sclerosis by the National MS Society and the Department of Veterans Affairs:

http://tinyurl.com/AdaptingYourHomeEnvironment

http://tinyurl.com/SelectingMSMattress

Beth Bullard, OTR
Occupational Therapist & Can Do MS Programs Consultant

Physical Therapist Response
Laurie DeMayo, MSPT
Can Do MS Programs Consultant

With spring upon us and the weather getting even hotter this is a very timely question.

Uhthoff’s Phenomenon is a very common symptom in multiple sclerosis. The symptoms generally do increase with the core body temperature increasing. There is no evidence that there is permanent damage from repition. There are several ways to keep your body cool and beat the heat.

1) STAY HYDRATED (With ice water)

- Dehydration can lead to fatigue, dizziness, and muscle cramps. The general recommendation is to drink 2 cups or 16 ounces of water about two hours before your work out.
- Drink ice water before, during and after your exercise. Keep your core temperature low.
You can freeze your water bottle overnight or you can use a hydration pack for your convenience.

2) EXERCISE IN A COOL ENVIRONMENT

- A COOL POOL IS A NICE OPTION
- When possible exercise indoors with air-conditioning on or outside during the cooler times of the day.
- Utilize cooling devices such as a cooling vest or even a wet bandanna around your neck or an EverCool Bandana.
- A twenty minute very cold shower or cold bath can cool your body temperature for quite a while.

3) WEAR CLOTHING THAT BREATHES

- Use exercise clothing designed to wick away sweat, allowing your skin to do a better job at cooling your body.
- Lightweight, breathable, and light colors are good choices.

4) UTILIZE AIDS TO KEEP YOUR BODY COOL

- If you're exercising outside wear a hat to protect your head.
- Consider performance socks to keep your feet cool and dry.
- Use sunglasses and sunscreen.
- Use a cooling vest, a cold and wet bandanna around your neck, or any other cooling device.
- Sip ice water throughout your exercise.
- Split your workouts into two times a day if necessary. Shorter workouts reduce the potential increase in your core body temperature. Allow yourself to exercise at the cooler times of the day in the morning and at night. The benefits of exercise are cumulative.

5) COOL- OFF AFTER EXERCISE

If you have experienced an increase in your symptoms such as Uhthoff’s phenomenon, cooling off should help you return to your functional baseline.
You can seek further suggestions from a local PT, OT, Exercise Physiologist and of course your doctor. Also, I have found no evidence of permanent damage.
Enjoy all the benefits of your commitment to exercise!

Neurologist Response
Janice Miller, MS, MD
Can Do MS Programs Consultant

Many individuals with MS experience Uhthoff’s phenomenon, a temporary recurrence of previous MS symptoms or worsening of MS symptoms with increased body temperature, whether from fever, exercise, or hot weather. As body core temperature cools to normal, the symptoms go away. Thus, there is NOT any lasting or permanent change in one’s neurologic status. This is due to the fact that heat slows conduction speed of nerve fibers that are partially or fully demyelinated.

We may soon be able to validate that Uhthoff’s is a temporary condition causing no lasting injury to nerve conduction. Researchers are measuring precise eye movement velocity in the MS condition called intranuclear ophthalmoplegia (INO) during systematic core body temperature increase and then during and after cooling. In addition to establishing whether nerve conduction returns to normal, therapeutic agents to prevent Uhthoff’s can be tested.

Physical Therapist Response
Susan Kushner, MS, PT
Can Do MS Programs Consultant

It is hard to assess exactly what is weak on this patient that is not allowing her to come to standing with ease. It could be any of the leg or trunk muscles, or balance, lack of range of motion, etc…

That being said, I would have a few suggestions:

-If possible, always walk with someone who would be able to help in case of a fall, or if she is alone, make sure she is in an area where someone could help her if she does fall.

-Use 2 forearm crutches, 2 canes, 2 walking sticks, or a walker when going for a walk. If she would fall, she can use the 2 points of support to help push herself up versus just the single cane. Or she may want to have a single cane, but carry one of the folding canes in a bag or purse so again, she’d have 2 bases of support to help herself up.

There is a great resource from the NMSS for both the patient and the PT. It is a binder that is an 8 week, once/week course that is titled “Free from Falls: A Comprehensive Fall Prevention Program for People with MS”. It is excellent.

Clinical Health Psychologist Response
David Engstrom,Ph.D., ABPP

Can Do MS Programs Consultant

Regarding your concern with fatigue, I think a lot depends on your patterns of fatigue and whether they have changed. Fatigue is very common with MS and can be a result of many things including the disease process itself, medications you take, stress and depression. My suggestion is that you keep careful records of the times when you feel fatigued during each day for at least 2 weeks. Does fatigue come on a regular basis and predictable times each day, or does it vary? Talk to your neurologist about this, and ask if they think any medications may play a part. Keep track of your moods during that same period, and see if the fatigue is connected to feeling depressed or “stressed out”.

On the subject of sleep, normal sleep for most adults is in the range of 7.5-8.5 hours per night. This should not vary too much with MS; although, the fatigue might cause you to sleep more. In general, sleep is good for you as long as it’s not overdone. Again, I suggest keeping a “sleep log” for several weeks to see if there are patterns. Do you sleep more following stressful events? This could be quite normal too, and I wouldn’t immediately see it as a “relapse”. If you are alert and rested on most days, see if sleep has been better leading up to those days. Do you have less daytime sleepiness after a good night’s sleep?

It is very important to self-monitor your sleep patterns and moods to see if there is a connection. Take these records to your healthcare providers to get their opinion, and don’t be afraid to ask questions!

Speech Language Pathologist Response
Pamela H. Miller, MA, CCC-SLP, MSCS
Can Do MS Programs Consultant

It sounds like you have multiple concerns about increasing sleep, fatigue, stress and cognitive problems. You should be aware that they can influence each other. For example, difficulty with sleep and fatigue can make it more difficult to think as clearly. Mental fatigue has been shown to interfere with cognition. Our brains need to be well rested, so that we can be alert, attentive, able to process information and recall it later. Unfortunately, fatigue is one of the most common problems in people with MS. The good news is that its effect on cognition is typically temporary, meaning that your performance on thinking tasks improves back to baseline when fatigue is properly dealt with. So it is very important to manage your fatigue through planned rests, applying energy efficiency strategies to daily tasks, and taking fatigue medicines prescribed by your physician.

Speak with your doctor regarding your cognitive concerns also. They are also present in ~50-65% of those with MS. Describe them specifically and how they are practically interfering with your daily life. Ask for a referral for cognitive evaluation and treatment. This can be performed by a neuropsychologist, a speech/language and/or occupational therapist , depending on the nature of problems that you would like addressed. There are many cognitive strategies that a therapist can provide to help you attend, organize, learn and remember better ; as well as manage your sleep, fatigue and stress.

Keep in mind that when symptoms persist longer than 48-72 hours and interfere with your daily functioning, it is important to contact your physician to rule out an MS exacerbation and discuss symptoms, treatments and referrals.

Physical Therapist Response
Patricia Bobryk, PT
Can Do MS Programs Consultant

Being consistent with an exercise program is always a challenge. Many factors come into play:
time constraints, energy level, other obligations and even motivation. My best advice for
incorporating exercise into your daily routine (whether it is stretching or any other form of
exercise) is to follow the philosophy of intermittent exercise. If you can view your exercise
program as a series of short bouts of activity that you intersperse throughout your day, it
becomes much more manageable than trying to carve out 30 or 40 minutes out at one time.
Here are some examples of how you might incorporate stretching into your day:


• Do one or two of your stretches before you get out of bed in the morning (as long as you
can wait to use the restroom).
• Do one or two standing stretches every time you stand up or go to the kitchen for a
drink.
• While you are watching television, stretch in between each show during the commercial
break, or better yet, stretch during every commercial.
• Find the stretches that give you the most “bang for your buck” – the ones that address
the most problematic areas, and be sure you do those first. If you need help determining
which muscle groups need the most work, consult with a rehab specialist that has
knowledge of MS.
• When you are on the phone, a passenger in a car, at a movie theater, sitting at your
desk, standing at the sink to wash your hands, take a couple of extra minutes and
stretch!

A classic book on stretching is titled Stretching by Bob Anderson. This book provides hundreds
of stretches that you can do in any position and also has specific stretches for specific activities.
Although this book is not geared directly towards individuals with MS, it gives great suggestions
on a variety of stretches. Remember, to reap the greatest benefit from a stretch, you must hold
it at least a slow count of 30 seconds, repeat two to three times on each side and no bouncing
(this can cause micro-tears in the muscle).

Good Luck!

Occupational Therapist Response
Linda Walls, OTR
Can Do MS Programs Consultant

Stretching is an important part of helping us stay active, and though we often think we can not fit
one more thing into our busy lives, it is possible. To begin with, you have identified that
stretching makes you feel better, and you recognize it is important. This is the first step to
making it happen! Managing our time helps us manage our energy.

Managing our time can be organized into a few steps.

• First, Plan ahead, if activities are planned they are more likely to occur
• Second, Prioritize, if you feel something is important, you are more likely to find the time
• Third, Pace yourself, consider your day and choose those activities that can be
balanced between high and low energy tasks, for example while checking messages, sit
and stretch your ankles, or stretch your arm down your side several times.

To help you incorporate stretching into your daily routine, here are a few suggestions to help
prioritize stretching into your day:

1. Make a plan. Identify three to five stretches that you feel are most important. Try to
match these stretches to movements you are already doing. For example, while in the
shower, be sure that you are standing tall and pulling your shoulder blades back. Or,
when you are drying off after your shower, concentrate on stretching slowly up and down
each leg. Another example may be while at the bathroom sink brushing your hair or
brushing your teeth, try doing several arm reaches to the ceiling, or leg lifts to the side.
Another example would be when you are getting dressed, sit down and stretch your leg
out in front, to the side or add a few trunk twists. Though this may seem like adding time
to your morning routine, the stretching will allow your movements for the day to become
smoother, as you work out the stiffness in the mornings.
2. Another consideration in time management is to start simple. Identify a few stretches
that make your feel good. Adding three stretches to your morning routine should only
take a few minutes. As you do these stretches every day, they will start blending and
become part of your routine. Then as these stretches blend into your routine, you can
add or switch stretches to address other muscles in your body that would benefit from
daily stretching.

Hopefully, with these ideas you can find a starting point for yourself, and move into your daily
stretching plan!

Neurologist Response
David Jones, MD
Can Do MS Programs Consultant

Multiple sclerosis starts as a primarily inflammatory disease that we call “relapsing remitting,” which over time transitions into a more degenerative disease that we term “secondary progressive”; however, in actuality, most MS patients have pathologic evidence of both processes, so the relevance of these terms is somewhat suspect. Relapses and new MRI lesions are felt to represent inflammatory events, while disability progression (not attributable to a relapse) and brain atrophy are commonly thought to reflect degeneration. All of these processes (relapses, new MRI lesions, disability progression, brain atrophy) occur in both RRMS and SPMS, albeit typically with different frequencies. Indeed, many MS experts think the inflammation drives the degeneration (or vice versa).

Our current disease modifying therapies for MS are felt to primarily act on the inflammatory component of MS (heralded by relapses and new MRI activity), so the MRI can be a very valuable tool (but not the only tool) in assessing a therapy’s effectiveness. If I deem that a patient’s response to a therapy is sub-optimal, I will recommend changing therapy. That being said, I will often decrease the frequency of MRIs in patients who have not had a relapse or new MRI activity in years; however, I will reconsider this if the rate of disability progression seem to change (or is faster than expected) or if a change is made in a patient’s disease modifying therapy.

Neurologist Response
John Schafer, MD
Can Do MS Programs Consultant

Hi Deborah,

Thank you for your very important question!

MS affects myelin in the central nervous system, which includes the brain and the spinal cord. Myelin in the optic nerve is the same as myelin in the brain and spinal cord. Myelin on the peripheral nerves (those nerves outside of the central nervous system in the trunk, arms and legs) is different in some way that makes the immune system uninterested. But, the immune system can attack the myelin on the peripheral nerves in disorders such as Guillain Barre syndrome or other immune mediated neuropathies. The treatment for demyelination in the central nervous system and the peripheral nervous system seems to be different.

I hope this helps answer your question regarding myelin.

Physical Therapist Response
Patty Bobryk, MHS, PT, MSCS, ATP
Can Do MS Programs Consultant

Spasticity is a common symptom of multiple sclerosis. More than 80% of individuals with MS experience some degree of spasticity during the course of their disease. Spasticity is an abnormal stiffness in the muscles anywhere in your body. You may also see the terms “increased tone” or “hypertonicity” when someone is referring to spasticity. The amount of spasticity can vary from a mild sensation of tightness to being so significant that it can cause painful active muscle spasms which actually move the extremity.

Spasticity is an imbalance between opposing muscle groups. For instance, if you have increased spasticity in your quadriceps (the large muscle on the front of your thigh) it may overpower the action of the opposing muscle on the back of the thigh (the hamstrings). In this case, you may find it difficult to bend your knee because the stiffness in the quadriceps (which functions to straighten your knee) overpowers the action of the hamstring (which functions to bend your knee). You may feel like you are moving stiff legged or that it takes extra energy to perform the movements to walk.

There are many things that can influence spasticity. Sometimes it may be clear to you what has caused a change. A poor night’s sleep, stress, or fatigue can certainly cause an increase in your spasticity. Sometimes the reason for the change may not be as clear cut. Something as subtle as a change in the weather, an increase in your body temperature (even from your normal circadian rhythm), an ingrown toenail or clothing or shoes that are too tight may alter your spasticity. Certainly if there is an increase in your spasticity from the norm you have to consider the possibility that you may have an infection (the bladder is a common culprit) or that it may be the hallmark of an exacerbation. Even when those factors are eliminated there may be no clear reason that you can pinpoint why you have an increase in your spasticity. It may just be the “current state of your neurological system” when there is no other explanation for the change.

Determining what works best to influence your spasticity is a very personal thing. Working with your doctor and your rehab professionals to develop a plan to best manage your spasticity is the best course of action. From a rehab perspective stretching exercises may be enough in some people to manage their spasticity. It is helpful to have a rehab professional determine which muscles are spastic and to teach you ways to most effectively stretch them. A prolonged stretch is always the most successful (30 seconds to one minute, no bouncing, 2 to 3 repetitions for each muscle group). Other activities which can have a positive influence on spasticity include yoga, relaxation exercises, meditation, massage and activities in a weight bearing position. Strengthening exercises also play a role. You may need to strengthen the opposing muscle, or once the spasticity is reduced, you may find that muscle is weak and needs strengthening. Orthotics (braces or splints) may also influence spasticity. Although we often think that spasticity is a negative sign, in some instances spasticity is actually beneficial to an individual’s functional skills. Spasticity can give legs some stability in order to stand for transfers or walking when someone is very weak. Again, working with a rehab professional that understands spasticity and can determine the best course of action is key. If these interventions alone are not effective, the addition of medications can help modulate the spasticity.

Placement of a Baclofen pump for spasticity management is a decision that is best made with input from your entire medical team. Most people have the pump placed because the dose of oral medication is at its maximum safe levels, the individual is having side effects from the medications or that the interventions are not producing the desired impact on the spasticity. The most important thing to consider when exploring if you are a candidate for the pump is managing your expectations of what the pump will do for you. Have an honest conversation with your team to determine what specific outcomes you can expect and what you will have to do to achieve them. Having the knowledge of what to expect will increase your chances of success with the pump.

Neurologist Response
John Schafer, MD, FAAN
Can Do MS Programs Consultant

The manufacturer of Baclofen indicates that the maximum dose of the drug is 80 milligrams a day. The maximum dose of Baclofen is usually dependent on what can be tolerated by the patient. It is difficult for me to say what the maximum dose of Baclofen would be for Victoria without having consulted with her personally.

Usually, an intrathecal baclofen pump is used for people who have very severe spasticity. In these cases, the spasticity is so severe that the patient is unable to walk anymore and uses the pump to help transfer from the bed to wheelchair or to the toilet. There are some selected cases in which the pump can help someone walk better; however, this is for patients with very severe spasticity.

I would recommend seeking advice from your medical care team or doctor to provide the most accurate and best advice for your situation.

Occupational Therapist Response
Linda Walls, OTR
Can Do MS Programs Consultant

I would like to share a couple of thoughts regarding your dilemma with your wheelchair lift.

First, I would like to suggest that the extreme temperature of -20 degrees can cause many mechanical devices to not work. In these temperatures, the lift may not work, but the lift is not damaged. Once the temperatures rise, the lift will probably resume working. If you feel you still have concerns, an inspection from a company that installs wheelchair lifts may ease your fears. Don’t let one negative experience influence your confidence in a lift which has probably worked for you many other times.

Second, I think you should feel positive about your ability to use your community resources. Your community volunteer fire department is an appropriate resource for you to call upon in such an extreme situation when temperatures are that low. Follow up with the volunteer fire department by sending a thank you card, or even visiting them in the spring and bringing them a basket of cookies. They will appreciate your thoughtfulness and gratitude. This will then help you to build a relationship with the volunteer fire department should you need them again.

A final thought may be for you to look at this situation as a motivator to explore other mobility options that may be available in your area. Talk with the MS chapter in your area, if they have suggestions for mobility for people with power wheelchairs. You can also contact the local chapter for people who have suffered a spinal cord injury and are in power wheelchairs.

Most important is that you do not allow this unusual situation stop you from being active! It is important to have your independence and ability to get out of your home and access your community.

Physical Therapist Response
Patty Bobryk, PT
Can Do MS Programs Consultant

There are many styles of braces (also known as ankle-foot orthoses - AFO’s) that are utilized for foot drop. The main purpose of the brace is to hold the foot and ankle approximately at a 90 degree angle to the leg so that as you swing your leg through to take a step and your toes and/or foot do not drag. A properly prescribed and fitted AFO can make a huge difference in your walking pattern, keeping the mechanics of your walking as close to normal as possible and also decreasing the amount of energy it takes to walk. Without an AFO, many people are at high risk for falling because of their foot drop, or they develop painful musculoskeletal problems that occur because of poor body mechanics.

The best way to obtain an AFO is to ask your physician to refer you to a physical therapist who has experience in gait analysis and bracing. If you physician does not know a therapist in your region, contact your local chapter of the National MS Society for a referral. Your walking pattern should be thoroughly assessed and recommendations should be made by the therapist on the type of brace that is most appropriate. Ideally, the orthotist (the person who fabricates the brace) should be included in the analysis and your team (your physical therapist, orthotist and YOU) should make decisions on what brace is right for you.

Braces can be custom-made which can provide the necessary support and can be tailored to your needs. They are typically worn in a shoe that ties because you want the shoe and the brace to act as one unit to provide the support you need. Having said that and living in Florida myself, I understand the heat factor when it comes to close toed shoes. With some strict parameters, I have worked with my patients to use their brace in a sturdy sandal (the sandal MUST have a back strap and hold your brace in it, otherwise the benefit of the brace is lost).
Another option to consider is the technology of functional electrical stimulation coupled with the walking cycle. As you take a step, a small electrical current causes a contraction in the muscle that lifts your foot so it does not catch as you swing through. The two companies that manufacture these units are Bioness and WalkAide. You can learn more about them on their websites (www.bioness.com and www.walkaide.com). The units are expensive and not all insurance companies provide coverage for them. You can work with your therapist to do a trial to see if this is something that you may be a candidate for.

I agree that you need to have a product that works for you. You may have to advocate for yourself and contact your insurance company to discuss your particular situation and see what can be done to obtain the appropriate brace for you.

Clinical Psychologist Response
Rosalind Kalb, PhD
Can Do MS Programs Consultant

I’m so glad that you’ve reached out to Can Do MS for suggestions. You’re dealing with many different stressors, each of which can be a lot to handle. I think that the key to managing so many complicated issues is to make sure that you’re tapping all the resources that are available to help you; no one should feel that she or he has to do this alone.

I would start by thinking about the things that worry you the most, and tackle them one by one. So, for example, if you have financial concerns, make sure that you reach out to get some expert guidance. The National MS Society offers a free consultation with a financial planner, as well as ongoing assistance with questions/concerns. You can get information about this by calling 1-800-344-4867. If you are concerned about long-term care issues, or how to go about finding long-term care resources should the need arise, now is the time to start talking about your priorities and getting information about the available options – beginning with help in the home and extending to day programs, assisted living, as well as nursing homes. None of us make our best decisions when we’re in a crisis, so talking and planning today helps you feel more prepared and less vulnerable whatever the future brings. These are just two examples, but the point is that one good way to relieve stress is to identify the tools and strategies you can use to address the things that worry your most. Knowing that you have plans and strategies in place, can help you stop ruminating about “What if this happens? What if that happens?”

A second critical strategy is to make sure that you are getting the emotional support you need. Staying connected with family and friends is important. Too often, people tend to withdraw from others and become isolated just at the time when those connections are most important. In addition to maintaining your social support network, you may want to consider talking with a counselor with expertise in health and chronic illness issues. Talking through your concerns, identifying options and strategies, and getting support for yourself can help you feel less stressed and more empowered to deal with whatever occurs. By calling that same number at the National MS Society – 1-800-344-4867 – you can get the names of therapists in your area.

The third important strategy is to make sure you’re paying enough attention to your own health and wellness. When dealing with chronic illnesses of various kinds, it’s very easy to become so focused on the medical issues that you neglect your overall well-being. Taking time to do things you enjoy, attending to your medical and dental preventive care needs, taking care of your spiritual needs, and finding whatever stress management techniques work best for you are all essential components of wellness. If you don’t know what activities best relieve your stress, the therapist can help you identify them – whether it’s time with friends, prayer, meditation, a hobby, journaling, or time in your garden, or something else entirely. Building these activities into your life is like physical therapy for your mind – keeping you calmer and more balanced.

And last but certainly not least, exercise is a wonderful stress management technique that is also good for your emotional well-being, cognitive functioning, and overall health. A physical therapist can help you identify an exercise routine that fits your abilities and limitations – whether it’s walking, swimming, or anything other physical activity that appeals to you.

Taking time to attend to your own health and wellness is essential for relieving stress and will also help you be a more effective care partner for your husband. I wish you the very best.

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Occupational Therapist Response
Anna Cotton, OTR
Can Do MS Programs Consultant

This is a great question. I am sure that many people with MS have experienced stamina issues at one time or another. Have you talked with anyone else with MS on how they handle their stamina? I have found that some of the best solutions come from my patients sharing with one-another. I encourage you to see what those around you do to handle to the same issue, as it is very common.

To address stamina, or energy, we have to start with the building blocks: energy banking and energy spending. Some of the ways you can bank energy is through getting quality, un-interrupted sleep at night, taking rest breaks during the day and eating well—just as you said. The way you spend energy is on physical, mental and emotional tasks—ones that you have to do and ones that you want to do. Unfortunately, this simple equation of energy in and energy out can be disrupted and made highly variable due to MS. Therefore, you have to utilize strategies to manage your energy and think about it more than you may have had to pre-MS in order to have the stamina to get through the need-to activities and hopefully some want-to activities as well. Here are some strategies that may help.

Plan ahead: Know what is coming up in the hours and days ahead so that you can make conscious decisions about how to spend your energy and bank your energy. To do this, you can use a calendar to schedule “appointments” for afternoon naps, healthy snacks or a regular bedtime. Then, most importantly, follow the schedule to ensure you have enough stamina for what you’ve planned for. If you find yourself fatigued and not able to make it through a day as you planned, use that as an opportunity to reflect and make appropriate changes for the next day.

Prioritize: Examine your have-to list and want-to list. It sounds to me from your question that you’re missing out on some of the want-to activities in your life. These are important, too! Are there any have-to items that you can do in a different way (simplify, do less frequently, etc.), delegate to someone else in your family or hire someone to do to allow for more energy to spend on leisure or play activities?

Monitor: What takes the most energy out of you? Is your fatigue constant or does it vary? Does it become worse with heat? Are physical, mental or emotional activities most tiring? Only you can monitor what you feel like and what helps and doesn’t help. Try keeping a written log for a week to understand what triggers fatigue and what helps you recover. Play around with different strategies like using cooling devices, taking rest breaks, and breaking large tasks into smaller ones. Another strategy is altering activities throughout the day to use different types of energy - physical, mental and emotional. For example, if you finish paying your bills online and balancing your accounts, you may need to give your mind a break so choose a physical activity instead of another mental activity.

Be flexible: Above all, being flexible to the needs of your body and how it may change day to day is key. Accept that as much as you plan, prioritize and monitor your energy bank and expenditure, you may have days when you just can’t make it through. Also, be flexible to doing things in a new way. For example, using a motorized cart at the grocery store—even if you don’t have to for mobility reasons—so that once you arrive home, you have enough energy to put the groceries away and spend quality time with family/friends or doing an activity you enjoy.

I wish you the best and encourage you to share what you learn with those around you—I assure you it will be valuable to others!

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Psychologist Response
David Rintell, EdD
Can Do MS Programs Consultant

Thank you so much for bringing this important question to Can Do MS. Please note that this response is a general response relevant to women and men who experience changes in sensation and other areas of sexuality due to their MS. Since this is a public forum, it is not appropriate to give direct, personal advice.

A person with MS who is experiencing changes in sensation and desire for intimacy should begin by letting her partner know that these changes are occurring, and they are often unpredictable. You and your partner can work out a short-hand so you can let him know that "it is not a good time" for intimacy, to avoid unclear expectations. Remind your partner what you can do, which might include cuddling, enjoying activities or movies together, and other ways of feeling close. Intimacy really means closeness and honesty, and you can always be intimate in that way. When you are intimate, let your partner know if his touch is not feeling good for you. It may be what often is pleasurable at times, may be uncomfortable or even painful.

Your second step should be to schedule a meeting with your health care provider. Your HCP can look for biological reasons why you might have a loss of desire, which could include testing for hormone levels, and find out more about the changes in sensation you are experiencing. Your neurologist, urologist, or PCP may be able to offer some insights and perhaps a helpful intervention. Ask for a referral to a mental health professional who works with people experiencing challenges in sex and intimacy.

Third, some things you and your partner can do:

  1. Desire is always dependent on feelings of closeness, comfort, trust and affection. You and your partner can take more time to express these positive emotions toward each other. Desire sometimes arises from emotional feelings, not just physical feelings.
  2. Explore the areas where you do have sensation, and see if asking your partner to touch you in the right way in those areas helps you to become aroused and interested. An activity called "Body Mapping" or "Sensate Focus" might help. This activity is done when you and your partner can take time when there is no one else around, and with the agreement not to engage in intercourse as part of the activity. One of you spends time touching different areas of the body, and the partner being touched gives feedback about how the touch feels in that area, and whether the touch should be softer, lighter, harder, etc. Then switch and do the same for your partner.
  3. Suggest to your partner that when intercourse does not feel like an option, that you cuddle, talk, and enjoy each other's presence. There is no couple who could not use more time cuddling.
  4. There are some good ways to increase sensation. There are new products which are lubricants which increase sensation. There are even products consisting of two different lubricants, one for each partner. When these lubricants meet, they react to each other and create more sensation for the users. There are many products, and if one doesn't work, it might be worthwhile to try another. One example is K-Y Yours and Mine - http://www.k-y.com/yours-mine-couples-lubricants.Many women and men utilize vibrators which increase sensation. There are many, many choices here. A good, reliable, and discreet source of vibrators are:
  • http://www.mypleasure.com - A website which offers products for sale and a great education section, including a section on Sexuality and Disability, offering items for people with limited mobility and ergonomically designed sex toys. The site is very positive, appropriate, and is not porn. They offer $5.00 off for new customers. Enter the code: WELCMYP.
  • http://www.goodvibes.com - Another positive sexuality online store, many toys plus much useful information.
  • http://www.goaskalice.com - Sponsored by Columbia University, Frank answers about Sex, relationships, nutrition, and health
  1. Finally, experiment! Find out what else works. Does heat increase sensation? Cold? Does watching a chick flick, a sexy movie, or reading increase your interest and desire? If you find something helpful, use it. If you find something that makes the problem worse, avoid it.

Most people find solutions or work-arounds to sexual problems related to MS. We hope you will too.

For further information about sexuality in MS, download the excellent edition of MS in Focus from the Multiple Sclerosis International Federation, www.msif.org, at http://www.msif.org/about-us/communicating-ms/ms-in-focus-magazine/intimacy-and-sexuality.aspx.

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Psychologist Response
David Rintell, EdD
Can Do MS Programs Consultant



First, remember that if you do not care for yourself, it is likely that your effectiveness as a support partner will eventually be greatly reduced. If you keep in mind that care of the self and care of your partners are linked in this way, it reduces the competition for the attention of the care provider. Therefore, some focus on your own needs is a necessity and should not be overlooked.Thank you for posing this very important question. Many support partners feel torn between providing care for their partner (or family member) and looking after their own needs. And as you have pointed out, after providing care, a support partner often feels depleted and unable to do something health promoting for himself or herself. Here are some ideas which might be helpful to the many support partners who are wrestling with this dilemma.

Secondly, let’s look at the statement, “No one is able to take care of me.” Part of being an effective support partner is identifying possible sources of support for yourself. The first place to look is your partner, the person for whom you care. Although she or he may not be able to provide physical help, s/he can certainly provide emotional support of some type. Even a “thank you,” or a “how are you doing today?” can provide an emotional boost. We know, however, that people living with MS sometimes need to be very self-focused in order to get through the day, and such may be unaware of your need for emotional support. You can tell your partner or family member that you need recognition, acknowledgement and gratitude. You can ask for it. And, if supportive statements from your partner are rare, make sure to let him or her know how much they are appreciated.

There are other potential sources of nurture and care for support partners, but it does take some effort to locate them. You may start by letting your closest friends or family members know a bit more about your life situation. Yes, they should already know because it is right in front of them, but they do not know what you need unless you tell them. If you tell your close friends and family, it is likely that they will offer help. They will not know what type of help you need. Make a list of tasks that would help you replenish. Each task should take about an hour, and if a friend or family member does the task, it will give you an hour to look after yourself; rest, go to the gym, meet someone for coffee, etc. Make index cards, each with one task. When a friend or family members asks, “Is there anything I can do.” Give them a card. The card might say, “Visit Lois for an hour on Wednesday afternoons, so I can go to Water Aerobics.” It might be, “Take our clothes to the cleaners.” It could say, “Find someone to visit Fred during lunchtime, so you and I could go out to lunch, and I won’t worry about Fred being alone.”

These days, many family members live far away and can’t offer support in person. Write some tasks on your list that can be done from afar: Find resources, call your partner on the phone, pay for a cleaning service or a few hours for an aide. There are many ways that we can support each other from a distance.

Finally, remember that your needs are as important as the needs of the person you support. Perhaps you like to go out to the local coffee shop, but your partner does not like to be seen in public with her walker. It is OK to emphasize that both of your needs have to be addressed. Although your partner or family member has the symptoms of MS, you are both living with all of the challenges caused by MS.

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Nurse Practitioner Response
Jennifer Smrtka, ANP-BC, MSCN
Can Do MS Programs Consultant

Rebecca, thanks so much for reaching out with this important question. Unfortunately, we see a lot of GI issues in multiple sclerosis (MS). Most commonly, constipation is reported in more than half the people diagnosed with MS. We think this may in large part be due to decreased activity, dehydration and decreased motility in the gut due to spinal cord involvement in the disease. However, there are publications dating back to 1995 describing confirmed diagnosed gastroparesis in MS, although it is not a common concomitant diagnosis in MS. We know gastroparesis is a result of delayed gastric emptying which slows or stops the emptying of food from the stomach to the small intestine. It is caused by damage to the vagus nerve, which is a cranial nerve that starts in the brainstem and extends down to the abdomen. The brainstem is in the lower part of the brain that is susceptible to lesions occurring in MS. Gastroparesis, like MS is also a relapsing condition, the symptoms can come and go for periods of time. Also, like MS, the relapses of gastroparesis can be managed by lifestyle changes, medications and sometimes if necessary, procedures. Unfortunately, there is no cure for it at this time.

To answer your question, there isn’t any evidence to suggest that a flare from your gastroparesis could elicit a flare of your MS. However, a flare of your MS could cause you to experience a flare of the gastroparesis. Theoretically, if one has existing or new lesions in the area of the brainstem where the vagus nerve starts, it could affect the remainder of the nerve leading to the abdomen and therefore result in the symptoms of gastroparesis. Treating the underlying MS flare at the time of the acute attack may decrease the severity of symptoms of the gastroparesis. Additionally, a health care provider may recommend symptomatic treatment for the gastroparesis with motility agents like metoclopramide.

Overall, there are ways to manage both the MS and gastroparesis to decrease the likelihood of experiencing flares from both conditions. First, in terms of both conditions, avoid smoking, which is known to worsen both conditions. Secondly, incorporating physical activity to the extent that you are able is quite helpful for both gut motility and physical mobility. Regarding specifics to MS, (if it a relapsing form) disease-modifying treatments are the first level of defense to decrease lesion formation, disease progression and acute inflammation. If there is an acute flare or relapse, it is important to be evaluated by a MS specialist or neurologist to determine if additional interventions are necessary. Dietary changes can be most useful in the management of gastroparesis and may also benefit constipation in MS. In general, health care providers may recommend eating six small meals per day instead of three larger meals. If less food enters the stomach at a given time it is less likely that the stomach will become overly full and empty more rapidly and efficiently. It is also important to chew food well, avoid high fat foods, avoid carbonated beverages especially with meals, and avoid lying down after eating. If possible, it is actually recommended to take a walk or try to move for 2 hours after eating to aid in the digestion. Some foods may be recommended to avoid if they do not digest well which may include some highly fiberous fruits and vegetables such as broccoli and oranges. Pureed foods may be helpful depending the severity of symptoms, and putting fruits and vegetables in shakes and soups may be most helpful.

In conclusion, it would be beneficial to discuss both conditions with your MS specialist as well as a gastroenterologist if you have one that diagnosed the gastroparesis so that the three of you can collaborate on a management plan that is both effective and tolerable.

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Yoga Instructor and MSCS Physician Assistant Response
Amy Dix, MPA-C, MSCS
Can Do MS Programs Consultant

Thanks for this great question! My suggestion is to meet with a multiple sclerosis trained MSCS physical therapist to learn more about the disease presentation, as well as the disease in general to understand the primary weaknesses found in your students living with MS. When training local yoga instructors to teach MS patients, I require them to read MS for Dummies as well Dr. Randy Shapiro's book titled Symptom Management in Multiple Sclerosis.

In general, when instructing students with MS, fewer poses is best, to encourage little to no heat. Also, using chairs with blocks under the feet for core strength is vital. Even if the student does not look like they have MS, they still experience invisible symptoms and their balance is affected by the MS. Encourage your students to do daily stretches, twists and anything to promote good bowel and bladder function. Don't forget that in the beginning, yoga was one-on-one instruction, and often, that same individual attention is needed when you have MS. Iyengar and Jois had to "heal" and serve those living with chronic illnesses, and it is still often required to guide each pose daily to help those with MS.

Namaste!

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Neurologist Answer
David Jones, MD
Can Do MS Programs Consultant

This question alludes to three issues, the first of which is determining the effectiveness of a disease modifying therapy in an individual patient with MS. Because not every patient responds well to every disease modifying therapy, it is appropriate to assess for additional or worsening of symptoms in patients on a specific therapy, as this may indicate a suboptimal response to the therapy in question. Studies suggest that new MRI lesions can occur 5-10 times more frequently than MS relapses, so it is appropriate to monitor both clinical (relapses and disability progression) and MRI (# of lesions, brain atrophy) parameters as part of the analysis to determine a suboptimal response, especially now as many MS specialists are striving to achieve "no evidence of disease activity" in their patients. Unfortunately, MRIs are expensive and can be uncomfortable for patients, especially those with claustrophobia. Furthermore, the techniques to measure atrophy on MRI are infrequently used in clinical practice, in-part because they are not standardized.

OCT (optical coherence tomography) is a marvelous technology that allows us to visualize the structure (and measure the thickness) of the back of the eye (retina), including the area involved with high acuity, central vision (macula). As the "eye is the window to the brain," some questioned we can measure MS disease progression with OCT. Indeed, there is some data to suggest that thinning of the retina may be a surrogate marker for brain atrophy, although, there is other data suggesting otherwise. A few clinical trials are beginning to explore the use of OCT as a potential marker for the efficacy of disease-modifying therapy, but this is still a very open question; therefore, an OCT is currently not a substitute for an MRI. As the OCT looks only at the back of the eye and as the MRI looks at the entire brain, I personally think that these techniques will remain complementary, and I do not see OCT replacing MRI in the future.

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Dietitian Answer
Baldwin Sanders, MS, RD, LDN
Can Do MS Programs Consultant

Thank you for your question. This is a common concern. Unfortunately, your caloric requirements are reduced with your MS due to limited exercise and fatigue. This makes weight loss more difficult but not impossible. It is important that you lose weight slowly and without fad diets, or it will come back. Your goal should be to lose no more than ½ pound per week. Make small steps, but be consistent.
For your fatigue, you want to reduce the size of your meals and include high protein snacks. Mozzarella cheese sticks, yogurt and cottage cheese with fruit are examples of smart snacks. It is important to engineer your environment. By that, I mean, make sure your home is conducive to your eating well. Stock it well with Lean Cuisine type meals, soups, fruits and vegetables, and get rid of high calorie snacks and sweets. Shrink your portion sizes, and load up on vegetables. For example, if you have a sandwich for lunch, save half of it for your afternoon snack. Eat baby carrots with it to fill you up and slow you down, so you will feel satisfied with less. I understand that eating at restaurants is tempting when you are fatigued, but this may double your caloric intake. When you prepare a meal or soup, make double so that you can freeze it and come home to a delicious meal when you don’t feel like cooking.

You can get a personalized eating plan from www.ChooseMyPlate.gov. You may want to consult with a registered dietitian. You can find a RD in your area through the website www.eatright.org. Good luck.

Physical Therapist
Michele Harrison, PT, ATRIC, ATP, CSMS
Can Do MS Programs Consultant

Your question brings up a lot of questions for me, as a physical therapist, trying to help someone living with MS learn how to exercise at appropriate levels while not increasing their symptoms of fatigue, weakness and imbalance. It would be very helpful to know what types of exercise you have tried. It would also be helpful to know the intensity levels and the length of time that you have tried to work out. It is a good idea to have a physical therapist or exercise specialist that is knowledgeable in MS and the variety of symptoms that are common for people with MS to assess your current strengths and areas that you need to work on. This would include assessment of your flexibility, muscle stiffness and range of movement, strength, balance, sensory issues, current mobility, exercise and activity levels. All this information helps a therapist individualize an exercise program specifically for your needs, current lifestyle and schedule. Participating in a graded exercise test will help give you the most specific information you will need on your current fitness levels and how to start a program from your current abilities. Good fitness is a combination of not only strength or aerobic exercise, but it also includes flexibility, coordination, balance and posture. Many people are good at one or a few of these components of fitness, but often people don’t incorporate all the areas. A therapist can help design a well rounded program of all of the needed components.

The types of activities that you choose to utilize for exercise may be the key to your success. For example, if you try to walk for increasing your endurance, but you are unable to do this for any length of time without great amounts of fatigue, then walking may not be your best idea for endurance training. Riding a stationary bike or a trial of water walking or deep water suspended activities may enable you to reach your goal of better cardiovascular fitness without the increase in fatigue. Another question to ask and address is if you experience heat sensitivity. If so, then utilizing or learning cooling techniques or use of a swimming pool that is the appropriate temperature for aquatic exercise may be key to your success in an exercise program.

I implement a lot of aquatic exercise into my treatment planning, and I run a number of aquatic exercise groups for people with MS. I find that the water is a supportive environment for people to exercise, walk and balance. The buoyancy, viscosity and hydrostatic pressure of the water often make people more independent and able to participate in higher level skills that they may not even attempt on land. The good news is that the work in the water has been shown to improve strength, endurance, flexibility and balance on land.

It may be that starting with 5-10 minutes of walking in the water (water about waist height) at a light to moderate pace is an adequate start to improve endurance and not trigger symptoms of fatigue. Adding just a few minutes to the time every week or so may be a good way to address the fatigue issue. You could also incorporate a 5-minute segment and then rest followed by another 5-minute segment. This may be an alternative way to decrease fatigue. Begin balance training by standing on one leg at a time at the edge of the pool, holding on if needed but trying to stand on one leg for 5-10 seconds. This may also be a starting place for improving balance.

There are as many variations to exercise programs, as there are people that want to exercise. You would find the most effective results by getting in touch with your local therapist or exercise specialist to help you create our plan.

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Psychologist Answer
Peggy Crawford, PhD
Can Do MS Programs Consultant

Jack, thank you for your question! It sounds like you are dealing with several big issues--fatigue, changes in your mood and stress all at the same time. We know that energy level, mood and stress can each affect the other making for complicated symptoms. Just as increased fatigue can negatively affect your mood and your ability to cope with stress, reduced fatigue can result in better mood and attitude and more effective coping. Because it can be difficult and sometimes impossible to sort out what is causing what, taking some action and experimenting with a change in one area can be helpful.


For example, addressing your fatigue could be a good starting point. You have a demanding schedule that includes a significant commute and long work day that could wear down someone without MS. You might consider options for getting to work such as carpooling or public transportation, changing your work hours even by 30 to 60 minutes to avoid rush hour, and/or working 4 slightly longer days with a day off in the middle of the week. Sometimes, it can be helpful to have even a brief (15 to 20 minute) period of down time when you first arrive home from work to make the transition from work to home life. Simplifying chores/tasks at home such as meal preparation, laundry and cleaning can reduce what you describe as not feeling motivated. For example, you can plan meals for the week so decisions don’t have to be made at the end of a long day, use a crockpot, and cook larger amounts of a favorite food and freezing leftovers for busy days. Setting realistic and attainable goals are essential ingredients to reducing feelings of being overwhelmed. Some people do this by breaking an activity into smaller parts and spreading them out over one or several days. Throwing a load of clothes into the washer before you leave for work and then putting into the dryer at the end of the day is an example of this strategy. Another option is to set a time limit and do what you can in 30 minutes.

In addition to having effective strategies for getting things done and feeling good about your accomplishments, it is important to have things to look forward to, e.g., phone call with friend, a movie or show (preferably something funny) you’ve wanted to watch, a new book you’ve been meaning to read, or a special dinner you enjoy. Getting a good night’s sleep can help you to start off the day with your battery charged. If MS symptoms are interrupting your sleep, talk with your MS provider. If you have trouble falling asleep because you are not able to turn off your mind and are thinking about all the things you need to do the next day, write them down before you get into bed.

It’s likely that if you make positive changes in one area, other symptoms will also get better. If after making some changes to better manage your fatigue, mood and stress level, your attitude and level of motivation do not improve, it might be helpful to talk with a mental health professional whom can assist you in determining if you are depressed and/or unusually anxious. Problems with mood are very treatable. If your fatigue does not improve, it might be helpful to meet with an occupational therapist especially one who has experience working with people who have MS to generate additional strategies for managing your fatigue.

Remember, you deserve to feel better than this!

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Physical Therapist Answer
Patty Bobryk, MHS, PT, MSCS, ATP
Can Do MS Programs Consultant

MS can affect any part of the body at any time. Even though many people do have issues with their legs, it is not uncommon to have symptoms in your arms. The symptoms that affect your upper body can be the same as with the lower body and can include weakness, sensory disturbances, fatigue, uncoordination and pain. It may be that you are experiencing more than one symptom that is affecting your ability to use your arms in the way you would like. For example, you may have some spasticity that can be painful but you may also have a primary pain problem.

My recommendation is to be evaluated by a member of your health care team. You may start with your physician who could help problem solve some of your issues and rule out any other pathology that may not be related to your MS. I would also recommend that you obtain a referral to a rehab professional so you can be fully evaluated. Occupational therapists are typically the experts when it comes to upper body issues but a physical therapist may also be of benefit. As always, I would advise you to seek out someone who has experience treating individuals with MS so they can fully address your specific needs.

As you work with your rehab professional, they will address your weaknesses with specific muscle strengthening exercises that will lead you to better functional skills. Your exercise program should always be within your level of fatigue. Current research shows that intermittent exercise (short rest breaks throughout a session) is beneficial in building strength and/or endurance and is a positive way to manage fatigue. You can also be educated on energy management techniques to help with fatigue and be introduced to equipment that may make activities less energy taxing. An example of one of those techniques is to place commonly used items in the kitchen on the counter or at least on a lower shelf so you don’t waste energy repeatedly reaching into a high cabinet. Small energy savings add up by the end of the day.

If spasticity (abnormal muscle stiffness/tightness) is an issue then a stretching program will be prescribed. Stretching in combination with medication may be necessary to handle this symptom adequately.

MS pain is often a difficult symptom to manage since it does not usually respond to typical pain medications. Your physician can recommend alternate medications that may work in your case. If some of your other symptoms are managed more effectively than your pain may also decrease. Sensory retraining strategies can be helpful also. This may include providing stimulation with different textured materials, for example a soft bristled brush or a nubby washcloth to the areas that are not feeling normally.

Being proactive and getting help to develop a plan to handle your symptoms is essential. Symptom management is key to living well with MS!

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Neurologist Answer
David Jones, MD
Can Do MS Programs Consultant

I think that many people with MS have difficulty understanding the purpose of the DMTs and incorrectly assume that these medications are supposed to make the person taking them feel better. Although I am not a mechanic, I think that a reasonable analogy is changing the oil in a car. Although many of us do not really understand how a car works, we have some perception that the oil keeps parts from wearing out and reduces that car’s chance of breaking down. The car does not run better after the oil change, and the oil change certainly does not fix parts of the car that are already broken. We do not question if the oil change was necessary if the car does break down. Despite this, sometimes drivers delay (or even forget) to change the oil in the car, perhaps because it is inconvenient, even though we know that five quarts of oil is much cheaper than almost any other car repair. Sometimes, we will “run an old car into the ground” by neglecting any maintenance until the car dies, after which we buy a new one.

MS is a more difficult scenario. Patients with MS may hear that the purpose of DMTs is to reduce the number of relapses, reduce the number of new MS lesions on the brain, and delay the progression of disability, but these concepts are quite abstract and may be difficult to understand. Most of us have little understanding of how the brain and spinal cord work or how MS actually damages them; furthermore, the mechanism of action of the DMTs is not completely delineated either. I think that this makes MS patients question the efficacy of the DMTs, especially when patients typically do not feel better (or improve functionally) when taking them. Indeed, a relapse or worsening disability can occur despite being on a DMT. We do not have great ways to measure whether a DMT is working, and the side effects of the DMTs can be unpleasant, and certainly, the DMTs are not cheap. Despite all of these issues, copious data show that the MS DMTs are beneficial in patients with MS, although this may require some trust to accept, especially as “no two patients are alike.” MS physicians do not have a “fix-it” drug (even stem cells) and obviously cannot replace a brain; it is clear that we are better at preventing disability than we are at reversing it. I think that truly understanding these concepts (and accepting some unknowns) makes consistently taking a prescribed DMT easier.

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Nurse Practitioner Answer
Aliza Ben-Zacharia, DrNP, ANP, MSCN
Can Do MS Programs Consultant

MS is a disease that may cause weakness in different muscle groups, including the respiratory muscles, muscles between the ribs, the main muscle that control breathing (the diaphragm) and the abdominal muscles. Usually, this occur when people have disease in the spinal cord and may occur early or late with the disease. However, as the MS progresses, people with MS might feel breathing problems caused by weakness, changing lung function, medications, and even sensations associated with the disease. The muscle weakness that occurs due to the MS may be exaggerated by the confinement to a wheelchair most of the day, but it would not be the only reason to cause difficulty taking a deep breath.

BUT --- prior to saying that your difficulty taking a deep breath is related to MS, you have to asses and rule out the following issues:

1. The most important step is to rule out a lung related issue by seeing a pulmonologist. Your lung capacity and ability to take a deep breath may be caused by asthma, chronic obstructive pulmonary disease (COPD) or other lung disorders. We, as clinicians, and you, as the patient, must address other causes: frequent infections such as colds or sinus problems, fatigue, thyroid issues and many others. Your general doctor and MS team can help rule out all other medical problems that may lead to difficulty taking a deep breath. Once a lung disease and other disorders or symptoms are ruled out, then you may think about MS as the potential cause.

2. The second step is to evaluate your medications, and make sure that they do not cause weakness or sedation that might affect your ability to take a deep breath.

3. The third step is to evaluate your lifestyle and wellness. Most importantly, if you smoke, you need to quit!!! Smoking is associated with MS disease progression, and smoking will definitely affect the ability to take a deep breath. Other wellness issues are exercise/activity level and your posture in the chair.

Ways to address MS related difficulty taking a deep breath:

It is very important to treat this and take precautions since your risk to have pneumonia is higher than other people without this symptom.
1. See a physical therapy that is trained in breathing exercises, working on core strengthening and deep breathing exercises.
2. Do physical activity in the wheelchair or standing up, if possible, regularly at least three times weekly.
3. Use different devices to promote deep breathing exercises, like spirometer or breathing/cough vest (your clinician will be able to help you get a device through your insurance).
4. Work with your clinicians to reduce medications that might lead to weakness, and discuss with your clinicians adding medications that might help address your symptoms vigilantly. Please keep in mind that it is important not to add too many medications, but take those that are necessary for your health and wellness.
5. Quit smoking if you smoke (mentioned above).
6. Treat infections promptly, and promote your health as much as possible. I would suggest taking a flu vaccine every year and a Pneumovax vaccine (pneumonia vaccine every five years as discussed with your general doctor).
7. Treat symptoms related to MS or other disease, for example fatigue, sleep issues. These symptoms need to be addressed to increase the ability to take a deep breath.

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Physical Therapist Response
Mandy Rohrig, PT, DPT
Can Do MS Programs Consultant

Thank you for your question, and I commend you on your efforts and diligence with an exercise program. Your question likely resonates with many people.

I would first recommend considering breaking up or sprinkling your aerobic exercise throughout the days you elect to do it. So, for example, if the goal is 15 minutes of aerobic exercise, then perhaps three, 5-minute sessions may be more manageable and less fatiguing. Another consideration would be incorporating the use of cooling products to maintain or decrease your core body temperature either before, during, and/or after exercise to improve tolerance. As little as 10 minutes has been shown to reduce fatigue secondary to heat sensitivity. There are many cooling products available, and I would recommend consulting the National MS Society or the MSAA for additional information on the cooling devices that exist. Lastly, I would encourage use of the Rating of Perceived Exertion (RPE) scale to monitor your intensity. This is a 0 to 10 scale, with 0 as no effort and 10 as extreme effort. Ideally, you should be exercising at a 3 to 4/10 intensity. Use this scale to help you better pace your workout.
Furthermore, I would also encourage you to consult with a physical therapist to help pinpoint precisely how to modify your exercise routine to maximize your energy.

I do hope this helps, and I wish you well on your exercise!

Occupational Therapist Response
Laura Kingston, OTR/L
Can Do MS Programs Consultant

Thank you for your question, especially as we head into wintertime. I am sure many people are in the same situation if they live in cold weather climates!

I would first recommend trying to talk to your apartment manager, friend or family member to see if they could do a better job salting the pathway and shoveling the snow around the entry point to your apartment door. They should be able to accommodate this request. I would also make sure your mode of transportation (car, shuttle, etc.) is as close to your apartment door as possible to decrease the distance you have to go. If you do have someone picking you up for your appointments, I would consider asking them to come up to your door in order to assist you during the inclement weather to prevent a fall.

Footwear is particularly important in the winter. Chose a pair of shoes that gives you the best support and traction when out in the elements. I have recommended to clients that they consider purchasing metal cleats that either are built into your shoes or that can easily attach to your shoes to help prevent slipping.

As far as using a walker outside, I would make sure that the posts have walker ski glides on them to allow for easy control over your walker vs. standard posts with rubber caps on the ends. You can order these from any medical supply store in your area or from a website such as Amazon.

Lastly, I would recommend a home safety evaluation which your MD could order to have a Physical Therapist come out to your home and make further recommendations to increase your safety and confidence.

I hope these tips help make your winter more manageable.

Physical Therapist Response
Patty Bobryk, MHS, PT, MSCS, ATP
Can Do MS Programs Consultant

Thank you for this great question!

As we begin the New Year many people are thinking about starting an exercise program. The many benefits of exercising include increased strength, increased flexibility, improved endurance and improved balance. All of these areas can help support your functional goals of
better walking, better stamina to perform your activities of daily living and to do things you enjoy.

There is no one exercise or type of exercise that is better than another in regards to MS. As the symptoms of this disease are very individualized, I always recommend being evaluated by a physical therapist to see what areas, if addressed, will give you the most benefit. When you have that information an exercise program can be tailored to your exact needs and goals. It is important to remember if you have limited energy, you want to get the most out of your exercises. Working on activities that are focused specifically on what you need will give you the most benefit.

The manner in which you do the exercise is as important as what type of exercise you do. The philosophy of intermittent exercises is a very important concept to follow. It has been shown that if you do exercise in shorter bouts without fatiguing yourself, all of the minutes of exercise add up and can actually allow you to do more than if you did one longer session a day. This concept keeps you from overdoing and prevents you from having a long recovery period after your exercise routine.

In regard to videos, I recommend that you try out a type of exercise video that interests you. You will be more apt to be consistent if you pick something that you enjoy doing. Yoga, tai chi, and seated workouts are just a couple of examples of types of exercise that may be appropriate for you. Many of these videos can be found for free on YouTube or other websites. Modify them as you need to (or ask your physical therapist to help you) and to stop before you over fatigue.

Enjoy and I wish you great success!

Occupational Therapist Response
Anna Cotton, OT
Can Do MS Programs Consultant

Hello!

Thank you for your question. You are smart to think about making changes to your home and planning for the future now. Many people wait until a major event happens and then wish they had made changes to their home sooner. I recommend starting now so you can put more thought and time into your modifications and be able to enjoy a safer, more comfortable home now and into the future.

I suggest you think about which activities in your home are the most difficult and use that information to begin prioritizing projects. For example, do you have trouble safely getting into your home, getting around in your bathroom or preparing meals in your kitchen? Are you using a mobility aid such as a walker or wheelchair and not able to access parts of your home because of stairs or narrow doorways? Also, consider what your budget is and what help you have to make home modifications. From this information you can make a plan and start making changes.

You mentioned balance issues in your question, so I’ll provide you some examples of small and big changes you can make to create a safer environment.

  • Make sure your lighting is adequate in all areas of your home including entrances, hallways, bathrooms and the kitchen. If it’s not, you can simply install higher wattage light bulbs and/or add night-lights in areas of low light.
  • Remove tripping hazards such as throw rugs and cords off the floor.
  • Widen doorways to be able to fit a walker or wheelchair through. It can be especially common in older homes for bathroom doors to be too narrow for a mobility aid, and this creates a big fall risk.
  • Consider making large changes to allow for all your essential living space to be on one level including a full bathroom, bedroom, kitchen and laundry area.

As you can see, creating a more accessible home can run the gamut of small and large changes. As you begin to think about the modifications you need to make, don’t hesitate to reach out for help. An occupational therapist can assess your home and give you recommendations. You can ask your physician for a referral. Additionally, look into community-based groups, such as Rebuilding Together (http://www.togetherwetransform.org), whose volunteers help repair and modify homes for those who can’t afford to do so. I applaud you for being proactive and starting the process now. Beginning with small changes now will make your home safer and more enjoyable for years to come.

Insurance Sales Representative
Misty
Progressive Insurance, Denver, CO

The answer to your question depends on where the van will be registered because every state has different laws concerning insurance coverage. In Colorado, you would need your own coverage for the van even if you were never the driver. However, there is special “helper” coverage that is very affordable. Because you are unlicensed, you could qualify for this policy, but you need to specifically name the “helpers” who will be driving the van. There is no limit in Colorado to the number of helpers you name, but, generally speaking, the more drivers you have, the more expensive the premiums. The cost of this insurance will be based on several factors, including the driving history of your helpers and the specifics related to the van itself. Therefore, an insurance company could not give you an accurate quote unless they know the details of the van. Once you have more information, call Progressive Insurance and we’ll take good care of you!

Registered Dietitian
Baldwin Sanders, RD
Can Do MS Programs Consultant

Thank you for the great question!

There is little evidence that “detoxing” eliminate toxins from your body. In fact, detoxing can “shock” our bodies (particularly if MS over-sensitizes your immune system) and can actually release more toxins. Any kind of stressor, whether it be emotional, mental, physical or environmental can have a negative impact on this illness. A sudden change of diet is no exception. This doesn’t mean you shouldn’t start including fresh juices into your diet. Juicing is a great way to get nutrients! When you drink juice, highly concentrated vitamins, minerals and enzymes rapidly enter the bloodstream absorbing all of the nutritional benefits of the fruits and vegetables and giving your digestive organs a much-needed rest. If you purchase a juicer or blender, it should supply recipes. There are also zillions of recipes online, including a couple of great “Juicing Recipes for Multiple Sclerosis” recipes found here: http://www.juicingrecipesforeverything.com/JUICINGRECIPESFORMULTIPLESCLEROSIS.html.

Can Do MS also hosts in-person workshops, where you can learn about juicing and another strategies for eating healthy with MS! Visit the Can Do MS website at www.mscando.org to learn about 1, 2, and 4- day programs coming to your area!

Please also read this great article on Healthy Eating and Multiple Sclerosis written by a fellow Can Do MS Programs Consultant, Aliza Ben-Zacharia, ANP, DNP, MS. http://www.mscando.org/living-with-multiple-sclerosis/can-do-library/ms-education/healthy-eating-multiple-sclerosis.

Occupational Therapist
Beth Bullard, OTR
Can Do MS Programs Consultant

I am not aware a specific shoe for MS. We know MS affects people differently; therefore, the right shoe choice would be dependent on the symptoms the person is experiencing. Many people with MS experience issues with balance, weakness and sensation in their legs and feet. Pain in the lower extremities and feet is not uncommon. Identifying the underlying cause of the pain will help you better identify treatment options. Shoes that are comfortable and fit well should be a priority. The weight and flexibility of the shoe, as well as tread thickness and ease of fasteners, are factors to consider when choosing a shoe.

To find the proper footwear for your particular needs, please consult an Occupational Therapist, Physical Therapist, or doctor. Professionals on your health care team are the best resources to find the best solutions for your particular pain.

The National Multiple Sclerosis also has resources on footwear, including this article from the National Multiple Sclerosis Momentum Magazine: http://www.momentummagazineonline.com/glass-slippers/.

Physical Therapist Response

Susan Anacker, MSPT
Can Do MS Programs Consultant

Congratulations on showing your Can Do spirit and modifying your exercise world to fit your MS!

Yes, I agree that you should use your ankle brace when you use your exercise bike. The brace will help protect your foot and ankle, keeping them from slipping off the pedal and possibly getting injured by the spinning pedals. With the brace you will be able to bike further. Using an exercise bike will improve your cardiovascular health, strengthen your legs and fuel your “Can Do” optimism. I would suggest starting with frequent short sessions. (for example, 5 minutes 6 days per week is better than 30 minutes 1 day per week) Start with low resistance. Your goal is a brisk cadence with a free, light feel. The best indication of how hard to work is the perceived exertion scale. (my.clevelandclinic.org/heart/prevention/exercise/rpe.asp) This is a method to rate how you feel as you exercise, and use this feeling as a guide to exercise intensity. Generally you should strive to exercise in the moderate, 3-4 range on a 1-10 scale. Increase both time and resistance slowly. (For example, increase time 1 minute every 2 or 3 days). At the end of the session you should feel pleased with you accomplishment and eager to bike again tomorrow. Make sure to take a moment at the end of each workout to celebrate your accomplishment. This is the fuel that keeps all of us coming back to exercise again.

As you continue on your exercising adventure you may want to do some daydreaming about real life biking (with ankle brace, of course), trying one of the numerous biking options available these days. (Reclining bike, tandem bike, three wheel bike, cruiser bike, electric bike…assist when you need it, no assist when you feel fresh.)

Again, the goal for all of us is to modify our environment to allow us to exercise more and feel the joy of movement. Thanks for showing us the way! See you on the bike trail!

Here are a few links to information on biking for people with differing abilities.

www.dsusa.org/equipment-cycling-Providers.html
www.thebikerack.com

www.ilovebikes.com

Occupational Therapist Response
Linda Walls, OTR
Can Do MS Programs Consultant

There are several points to make in answering this question. First, exercise is good for someone who has MS, just like it should be a part of everyone’s regular routine. Your body benefits from exercise in that it keeps your muscles stretching and strong, exercise also gives you the benefits of a good cardiovascular system. If you used to use an exercise bike in the past, then finding a way to continue using it, is a good idea. Sometimes, in order to accommodate the changes in our body, we need to make modifications so that we can continue to exercise.

Second, to address the concerns with the ankle brace. The best answer would be to talk with the professional who provided you with the brace, to make sure there are no contraindications. If the brace is a simple device designed to help promote your ability to keep walking safely, then you can consider moving to the next step. If you decide to try using the bike with the brace on, make sure the brace fits well and does not irritate your skin anywhere. Each time you exercise with the brace on, check your skin afterwards and look for red irritated areas that do not fade within the hour. Also, begin with a short period of time, and slowly build. For example, exercise with the brace for 10 to 15 min. then check your skin. After successfully tolerating the 10 to 15 min. interval for several days and no skin irritation, increase the amount of time slowly, always checking your skin. This general idea of slowly increasing your tolerance for wearing a brace while exercising applies to many types of braces and supports.

Thirdly, when you begin to participate more in your exercise routine, take time to pay attention to how your body is responding to the increased exercising. Take time to allow your body to recover, and notice if the increased exercising impacts your overall level of fatigue. A regular exercise program should help you manage your energy levels and hopefully even provide your with an increased level of energy.

Registered Nurse Response
Jennifer Smrtka, ANP-BC, MSCN
Can Do MS Programs Consultant

Unfortunately, flu-like symptoms are common potential side effects with all interferon beta therapies used in MS. But there are some important tips that one can utilize to lessen the likelihood of losing days due to these symptoms.

First, make sure to be hydrated; especially on days of injections and “MS Monster days”, this can decrease flu like symptoms and their severity. Secondly, it may be helpful to take acetaminophen (Tylenol®), ibuprofen (Advil®), or naproxen sodium (Aleve®) an hour before injecting (at bedtime) and then re-dose again in the morning after breakfast. It may be helpful to take these medications for 24 hours after the injection. Thirdly, it may be helpful to take the injection in the evening before bedtime in an attempt to sleep through some of the side effects. Lastly, if you continue to struggle with your injections, speak to your neurologist and let him/her know your troubles. There are many options available and there may be a better option for you.

Emotionally, sleep deprivation can lead to feeling overwhelmed and “scatter brain”, as well as having difficulties with concentration, and coping strategies. It is hard to stay organized when you are exhausted and not feeling well. Perhaps using some organizational tools maybe helpful- such as a smart-phone to set reminders and alarms, or a personal organizer with a calendar. A centrally located “family calendar” may also be helpful with your husband and son’s assistance to complete for upcoming events. Weekly or even daily family staff meetings over dinner to communicate and establish what needs to be done on a day to day basis can also be helpful and share the burden of family tasks. There are websites that also have organizational tools for families.

Check out: www.parents.com; www.grocerylists.org; www.chorebuster.com; www.cozi.com

Occupational Therapist Response
Ann Mullinix, OTR/L
Can Do MS Programs Consultant

First, I want to commend you for your motivation and determination to enhance your independence! I know you are working very hard to care for your family and keep up with the demands of life. It is not easy, and your health is a priority, which has become more consuming over the past 2 ½ years.

Know that yes, there are ways to modify your home environment to enhance your independence and there are resources in the community to assist.

Your first step will be to contact a MS Navigator through the National MS Society (1-800-582-5296). An application will be sent to you to fill out to receive financial assistance/start the process for a home evaluation by a medical professional, such as an occupational or physical therapist, pending on who is available where you live. A home evaluation will give you the specific recommendations you are looking for to make your home handicap accessible.

Modifications that are made to homes include structural adaptations such as increasing width of doorways for accessibility; railings, ramps, or stair glides, if stairs are a challenge. More minor changes may include obtaining durable medical equipment such as grab bars in the bathroom or shower chairs; bed rails and commodes. Other examples of easy modifications include changing doorknobs to levers, and hinges on doors to swing clear hinges. Some modifications don’t require purchasing or installing anything, but only simple re-arrangement of where frequently used items are located for easier, energy saving convenience. The MS Navigator will also be able to assist you will obtaining items needed, and know there is grant money for medical equipment, daily living aides, and even household chores!

There are many ways a home can be modified, from simple to more complex, and a health care professional’s evaluation will give you the specific direction you need to take. With the right set up, you can do it and like you said Maria, you can “take your life back.”

Physical Therapist Response
Kathy SanMartino, PT, NCS, MSCS
Can Do MS Programs Consultant

There are a few things you can try.

1) First of all, I'm sure you are being practical in what you wear in terms of clothing i.e., Wearing the least amount of clothing and clothing that breathes.

2) Bring a cold, non-caffeinated drink with you to cool off your core.

3) Try to limit your outings during the hottest parts of the day.

4) If you have a wheelchair that will get you somewhere quicker -now is the time to use it. That will limit how much time you spend outdoors.

5) Blast the AC in the car so your core temperature is lower before you open that car door.

6) You could try a bringing a personal fan with you.

7) Use a cooling tie. You can find these in many stores selling outdoor equipment. I have also seen these ties on www.vermontcountrystore.com.

8) If all else fails - get a cooling vest. You can call 1-888-MSFOCUS (1-888-673-6287) or visit http://www.msfocus.org for financial assistance for the cooling vests. www.polarproducts.com seems to be a popular source for cooling vests.

Neurologist Response
George Garmany, MD
Can Do MS Programs Consultant

Thanks for asking this important question. One of the most complex functions of our central nervous system is to keep us upright and to help us to avoid falling. Anything that impairs the way the brain and spinal cord work together puts a person at risk of unsteadiness and causes a sense of dizziness. The broad term for this symptom is dysequilibrium, or a loss of normal balance.

In persons with MS, loss of equilibrium is usually a sign of an exacerbation in the brain stem, but there are many other possibilities. The problem could be related to an infection in another part of your body, a medicine that you are taking, weakness that you haven't noticed in your legs or feet, or some other factor specific to your body. It's important that you see the physician who treats your MS (probably a neurologist.) He or she will do physical tests with you to help to determine the exact cause of your dysequilibrium. An MRI may be recommended to see whether there is evidence of a recent exacerbation. Lab tests may be ordered to see whether there is a separate condition that affects how your central nervous system is working. Most importantly to you -- after these tests are completed, treatment will probably be recommended. This could include anything from medical treatment to physical therapy, and may well include both approaches. There are certainly things that you can do to reduce your risk of falling.

Since MS can have many different symptoms, it's important that you develop a spirit of cooperation with your doctor and the other members of your treatment team. And you should make sure to use disease modifying medication correctly to reduce the risk of further exacerbations even though your disease has been mild in the past.

Physical Therapist Response
Tammy G. Roehrs, PT, MA, NCS
Can Do MS Programs Consultant

Our balance systems are complex, and are supported by our vision, our vestibular system (in our ears), and by our somatosensory systems (the sensations of pressure, joint position, and joint movement in our legs and spine). It is not unusual for visual difficulties to lead to dizziness and falls for individuals with MS. This may be true even if a person has a mild form of MS, or if a person is not having a relapse.

We must also consider the context in which we are trying to balance, especially the environment in which we are moving, and the task we are trying to perform. You mentioned that you are falling when walking your dog. Is this the only time you fall, or are there other times? Spending some time thinking about when you fall, or when you nearly fall, and trying to identify a pattern is important. Is it always outside? When you are distracted or trying to do more than one thing at a time? When you are fatigued, or perhaps overheated? Sharing the pattern of your falls (and "near falls") with your physical therapist is one important step in designing a plan to prevent future falls.

There is good news! Our nervous systems have a great ability to learn, and balance can improve, with a tailored program to meet each person's specific needs. I would suggest working with a physical therapist who specializes in treating individuals with MS or vestibular/ balance impairment. Contacting the MS Society, your neurologist or nurse practitioner, or investigating websites of local PT practices are all methods to identify a physical therapist with these qualifications.

Walking your dog is a great activity for so many reasons! You Can Do something to improve your balance, decrease your number of falls, and keep exercising with your pet.

Physical Therapist Response
Mandy Rohrig, DPT
Can Do MS Programs Consultant

Thank you for your question. I do hope I can provide you and your husband some guidance.

If your husband receives Social Security Disability benefits and has Medicare as his primary health insurance, he should be eligible for a power wheelchair with Medicare helping to cover the cost. The steps he should take to access this benefit are as follows:

  1. Contact a physical therapist who is familiar with multiple sclerosis and/or power wheelchair assessment and fitting. The physical therapist can help you connect with a wheelchair vendor that can show you the many options available to you in terms of power mobility. A key component for Medicare, or any insurance for that matter, to cover the expenses for a power wheelchair is justification of need. Documentation from the physical therapist and the physician demonstrates the need for a power wheelchair. The physical therapist, wheelchair vendor and physician should all be familiar with the necessary language.
  2. Have a conversation with the health care team about the anticipated uses of the power wheelchair. Will the wheelchair be used in the home, community, or both? Will you be able to transport the wheelchair in your current vehicle or will you need to consider a van? Will you be able to access your home (entrance, doorways, etc) with the power wheelchair? These are just a few questions to consider. I would highly recommend having additional conversations with the wheelchair vendor and physical therapist regarding the anticipated use.
  3. Investigate, trial, and select the power wheelchair that best suits you. Then, request a prescription from the neurologist for a power wheelchair. The physical therapist and the wheelchair vendor will help define what needs to be included in the prescription.

I wish you and you husband the best as you start on this journey. I do hope the wheelchair you select brings improved mobility and great joy to your lives.

Certified Therapeutic Recreation Specialist Response
Gus LaZear, MBA, CTRS

Hi Debra, thank you for your question! I am excited to hear that you are interested in learning about adaptive golf and getting active with your husband!

First, it is important to understand what YOU need to adapt, if necessary.

As when you started golfing, it is important to go to the driving range, chipping and putting greens to learn or relearn basic golfing skills. Find a local course that has an adaptive cart – such as a Solo Rider. You can learn more about what this is at http://www.solorider.com/. At my rehab facility in Phoenix, Arizona Bridge to Independent Living, we have a unit called the Stand Up and Play paragolfer. Both work great, but they may not be for everyone. Some just need a regular cart and additional time. Also, don’t feel rushed when playing golf, and let others play through, and go at YOUR own pace.

Start small and go from there. Maybe start with a par 3 course and grow into the back nine at your favorite course. With MS, understanding your environment and how it impacts you is the key to success.

Question submitted by Kevin Walter, CAN DO Program Graduate, 2010

Exercise Physiologist’s Response
Alexander Ng, PhD
Can Do MS Programs Consultant

Kevin,
The nature of your question leads me to believe that you are initially referring to recovery from physical activity or exercise. Recovery is directly related to the activity that causes the physical fatigue. The more intense or harder the activity, and the longer the duration of activity, the longer will be the recovery time. If you are having difficulty recovering from exercise then try to cut back on either the exercise difficulty, duration, or both. If you wanted to maintain a certain moderate or perhaps high intensity then I would recommend breaking it up into smaller time blocks.

As mentioned in a previous question/answer the exercise does not have to be
continuous for you to receive a benefit. Proper nutrition is also important to
the recovery process. In addition, adequate nutritional support is necessary to maintain muscle mass and body weight… the second part of your question. If maintaining or increasing muscle mass and strength is a goal then I would make sure you are doing some appropriate strength or resistance exercise in addition to whatever aerobic exercise you may be doing. A YMCA would be a good place to start a formal strength training program as their personnel are usually pretty competent and can have experience with “special populations”.

Regardless, speak to an experienced exercise, rehabilitation, or related professional for proper strength training techniques and programs. In addition, there is also good evidence that strength training can help decrease symptomatic or “MS fatigue”, which you may have referred to as the last part of your question.

In short, pace yourself, eat well, and maybe add some strength exercise! I hope this helps. Good luck.

Nutritionist’s Response
Baldwin Sanders, MS, RD, LDN
Can Do MS Programs Consultant

Your diet can have a big influence on your fatigue level. Skipping meals or going too long without eating can exacerbate fatigue. A quick breakfast of cereal, banana and milk or yogurt and fruit are better than skipping breakfast.

Having snacks available is important so you don’t go too long without food. High protein snacks are good as they tend to make you more alert. Sweets tend to make you sleepier. Carrying mozzarella cheese sticks, a handful of nuts, or a container of yogurt can help you make it to supper.

A good idea is to have some frozen meals available so when you get home you have something quick and easy to microwave. Otherwise you tend to go with
anything that is there, chips and salsa, etc. When you are cooking something
good, cook in bulk and freeze for later. Make large batches of soup, and freeze
in individual servings so you have a quick fix for lunch or supper.

Occupational Therapist’s Response
Juliann Hanson-Zlatev, OTR
Can Do MS Programs Consultant

This is an excellent question, Kevin.

The first “trick” to managing physical fatigue is in utilizing 2 strategies to
your advantage. Pacing yourself and prioritizing your schedule and intensity of activities is paramount to achieving your goals and managing fatigue.

1) Pacing: To pace yourself effectively you must strive for a
fairly consistent level of physical activity each day. It is helpful to think
of the whole of your day in order to do this, including mundane/everyday chores
because everything you do requires your energy. For example: Avoid working
very hard for 1-2 days then “resting” or “collapsing” for several days because
you will have depleted your resources and your body will have difficulty in
anticipating your needs. This also applies to the intensity of your workout as
well. The more consistent your work out is the better your body will maintain
muscle mass and skill. The more consistent you are the more your body and mind
“absorbs” the skill and you will use less energy to perform it as time goes on.

(Another example: an Olympic skier exerts less energy skiing bumps than the
rest of us; mundane activities use less of our energy than when we are learning
a new skill).

That said, there are always exceptions and you may wish to plan ahead with your
schedule to anticipate a long or challenging day by planning into subsequent
days your rest breaks. For example: you may wish to go out with friends or
family one evening; the following day you may want to plan a lighter day so you
will not use as much energy. However, you would still plan activities for the
following day – just lighter.

2) Prioritizing: This helps you get the chores/activities that are important to
you done. When we fail to prioritize we set ourselves up for disappointment or
overdoing it just to accomplish our list! Placing high priority tasks/chores at a time of day that ensure they will get done helps us do just that – accomplish
our “’to do” list. Here is the great news: your priorities can shift and
change and do not have to include only work chores. Exercise, hobbies, friends and interests should also move into the #1 and #2 spot to balance and round out your life. Keeping exercise close to the top of your priority list will ensure that you build endurance, maintain body mass and skill level, and improve your cardiac capacity for improved longevity (read: less fatigue).

A final word on fatigue management; try to use as little energy as possible to
complete a given task. For example: sitting to perform any activity requires
less energy than standing to perform the same activity; so sitting to shave,
brush your teeth, prepare food, etc.can save muscle exertion and thereby grant
you more energy elsewhere in your day where you WANT to use it. Thank you for
asking an important question.

Question submitted by Ed Ferrera, CAN DO Program Graduate, 2007

Neurologist’s Response
Randall T. Schapiro, MD, FAAN
Can Do MS Programs Consultant

To my mind the management of primary progressive MS is a matter of science and philosophy. By that I mean that an appropriate amount of understanding into multiple sclerosis as a whole is necessary to manage “primary progressive” MS. The diagnosis itself is based on the presumption that the person has never had a relapse. That is the definition of primary progressive. However, if one delves hard enough into the history of almost everyone with that diagnosis, one finds a relapse somewhere and the diagnosis is then most appropriately called “secondary” progressive. Thus the diagnosis, itself, is usually pretty flimsy. To base a whole treatment scheme on that kind of flimsy clinical calling is pretty weak. Yesterday I was on an airplane with a person (by coincidence) who came from a small town and supposedly went off her Copaxone because a physician called her “primary” progressive and she immediately had an attack. Thus what is most important to me, philosophically, is: are you getting worse? If so, then something has to be done. Many of the common MS treatments have been tested in progressive (both primary and secondary) MS. The studies did not reach statistical significance for their primary endpoints and thus were call “failures”. However in each study there was a cadre of patients who clearly responded to the treatment. There were just not enough to call the study successful statistically. But to those patients that did respond, it did not matter that the others did not.

Thus I think it reasonable to try different treatments and see what the response is over 6 months to a year. I think we can get hung up on the terminology and give up without trying. Success is a slowing of the progression, maybe not entire stabilization but slowing. There are new studies being done on a regular basis on progressive MS and we are buying time. While we buy time with disease modification, symptom management becomes particularly important. Thus with more advancing MS, it is important to look at the symptoms and manage them aggressively. The tools are pharmacologic, rehabilitative, and psychological. Therefore appropriate rehabilitative/exercise/mental management is essential. I will leave to my co-answerer some rehabilitative pathways but they are essential.

The point is that there is much to be done and when I hear some tell me their physician told them they have Primary MS and there is nothing to be done, I cringe. There is a lot to do and continue to do with a can do spirit!

Physical Therapist’s Response
Beth Gibson, PT
Can Do MS Programs Consultant

We all have our habits and routines, but sometimes they just don’t seem to work. For example, if the MS causes your muscles and limbs to feel tight or spastic, you could spend a lot of energy trying to get out of bed in the morning. Discuss this with your doctor for the medical management that is right for you and get into the habit of stretching these muscles / limbs to reduce the stiffness or tone. Work with a Physical Therapist at an out-patient clinic or if needed, have a home Physical Therapist come to you. The National MS Society has the “Stretching for People with MS” and helper booklets (on their website). Try a yoga or adaptive yoga class through a local health club, your local MS chapter or the Arthritis Foundation.

Working with a Physical Therapist can also give you information on mobility devices or tools to reduce the effort to move but increase your safety. A small bed rail can help you roll and get into and out of bed. If you like walking on a cane but your other hand likes to be on the wall or the back of the chair, look at a front wheeled walker for maximum stability or a 4 wheeled rolling walker for a bit less stability but that has a seat to rest on. If walking in the community is getting limited, look at the scooters – the 3 or 4 wheeled type or the power chair – or look at an electric wheelchair. I do recommend going to be evaluated by a PT/OT at a wheelchair or “Assistive Technology” clinic to get the device that is suited to you and your needs. And don’t forget about those Occupational Therapists – they have some nifty ideas for around the bedroom, bath and kitchen.

These are just a few ideas to help simplify your day because you have important things to do. Whether going to the grocery store or delivering world peace, the day belongs to you.

Question submitted by Dennis, CAN DO Program Graduate, 2009

Urologist’s Response
Susan Kolata, MD
Can Do MS Programs Consultant

There is no specific amount of water needed daily. In Arizona in the summer you
might need to drink 20 glasses of water to maintain a reasonable output if you
exercise in the sun. The more important question is how much urine output is
needed and what it takes to get there. If you produce stones, a reasonable
preventative output is 2 liters of urine daily. If you just want a minimal
output, it is one liter. In between would be best.

Many foods will help towards this goal as well, fruits, soups, vegetables, etc. Only high protein shakes/or bars, etc will take away fluids, but some drinks are
less desirable such as coffee, sodas and alcohol. Using bottled water can be
helpful in counting the volume -ie try and drink 1 bottle per 1-2 hours, or so
many per day - for those goal oriented people. Adding lemon juice or orange
juice to the water, making ice tea, finding a water, or water temperature that
is enjoyable, can be helpful. The ultimate goal is to produce urine that is
lighter in coloration (less concentrated), so stones are flushed out, bacteria
is flushed out as well as routine toxins.

Nutritionist’s Response
Denise Nowack, RD
Can Do MS Programs Consultant

Water is an essential part of your body’s daily routine. It helps in the digestion and transports other nutrients, controls body temperature and is important for brain function. It’s something we can’t live without.

It might be tempting to avoid beverages as a strategy to “manage” bladder problems. However, this can lead to dry mouth, loss of appetite, swallowing difficulties, headaches, constipation, deficiencies in certain nutrients, and increased risk for urinary tract infection.

Don’t despair if you don’t like water. It’s really about getting adequate fluids, and that can come from a variety of sources.

Here are a few tips to staying well hydrated:
* Start with your oral medications. Make it a habit to drink a full glass of water or juice each time you take your pills.
* Include other beverages at meal and snack time like juice, milk or sparkling
water. You can even make your own fruit spritzer by diluting your favorite fruit juice with sparkling water.
* Build in “water breaks” throughout your day.
* Pass a water fountain…take a drink.
* Carry your own personal water supply when you are out and about.

If you’re prone to urinary tract infections, include cranberry juice (or tablets). In addition to providing fluids, cranberry juice can be of added benefit in preventing urinary tract infections by preventing bacteria from sticking to the cells that line the urinary tract.

In addition to beverages, the foods you eat can help satisfy your body’s thirst. In fact, about 20% of our daily water intake comes from food, with fruits and vegetables having some of the highest water content (upwards of 80%) . Topping the list of juicy fruits and vegetables are lettuce, squash and watermelon (95%), tomatoes and broccoli (92%) and strawberries and peaches (90%).

A common serving of the following foods contributes about 8 ounces of fluids:
* Spaghetti with meat sauce
* Oatmeal with blueberries
* Chicken noodle soup
* Low fat cottage cheese with pineapple

Soups and foods with broth or cereals with milk are other great options.

Hopefully with these ideas you might find it easier than you thought to fit in
fluids into your daily routine.
Good eating!

Question submitted by Kay Roberts, CAN DO Program Graduate, 2001

Physical Therapist’s Response

Susan Kushner, MS, PT
Can Do MS Programs Consultant

Without knowing what the ankle problem is (weakness, bracing, etc) and whether you use an assistive device, I would suggest that you ask each physical therapist WHY they are recommending what they are recommending. Most likely they each have good rationale behind their decisions and advice to you. It is up to you to use logic and maybe even practice as to WHICH suggestions will be best for your case, as long as you feel that nothing detrimental will be done to the ankle or put you in harm's way, such as risking a fall. Feel free to gently say to one what the other one suggested and ask why the advice may be different. They both may have very good, valid points and a compromise may work.

Without knowing the specifics, I hope these suggestions help you.

Question submitted by Mark T., CAN DO Program Graduate, 2011

Neurologist’s Response
Randall T. Schapiro, MD, FAAN
Can Do MS Programs Consultant & Board Member

Finding a neurologist is not a simple question. There are a lot of factors that go into that choice and some of them are out of one's practical control.

The first is: are you in an area of the country that has enough neurologists to offer a choice? If not, one may need to travel to where there are appropriate choices and that may be difficult for some but I recommend that if necessary.

The second "out of control" issue is insurance coverage. Does your insurance allow you to choose as you desire? Given that you can make a choice, I would recommend you talk to others with MS about who is actually interested in sincerely treating MS in your area. While all neurologists will express interest, clearly some have more interest than others. The National MS Society is a good place to start as each chapter should be keeping a list of interested neurologists. After the list is obtained, the interview process should occur. That may start with a call to the office and a listen as to how the staff treats prospective patients. Inquire about the nursing staff as they are important in long term care. If all goes well an initial appointment should be made to discuss the situation. Keep in mind your personality and will it mesh with the doctor's. Are you one who likes to call all the shots and does not take advice well? Is the doctor one who likes to dictate and does not discuss well, etc.? "Chemistry" is important. Make a list of questions that you want answered and see if it "feels" right.

Any physician can prescribe the treatments but not all know what they are doing. You need a neurologist but it has to be one who has kept up with what is new in MS and there is a lot new. You do not want one who uses only one medicine at the exclusion of all the rest. There are lots of options but without knowing your specific situation (that can only be determined by an appointment and evaluation) it would be inappropriate to suggest any specific treatment. While most who have MS should be protected is some way, there are a few lucky ones who make it through without. That has to be discussed with your physician to see where you are in the spectrum of MS. Good luck to you!

Nurse Practitioner’s Response
Patricia Kennedy, RN, CNP, MSCN
Can Do MS Nurse Educator & Programs Consultant

I’m glad you are thinking about getting back on a disease management treatment. While none of them is 100% effective against MS, they certainly do alter the course of MS in a positive way. I personally feel all patients with relapsing MS should consider being on one of them. There really is no other treatment that can deliver the same results. Many patients want to consider an alternative kind of therapy to avoid cost or not require a neurologist to prescribe. Unfortunately, to date, there is no therapy available that will be able to alter the course of MS.

As to your question about whether a neurologist has to be the prescriber; it is best to have a neurologist who specializes in MS or has many patients with MS and is knowledgeable about the medications to be managing you and your medication. If you live a distance from someone like this, set your sites on who is most accessible and make the trip. You can work with him or her to set up a secondary provider closer to you who they can consult with when you have issues and then you can visit the specialist maybe once a year. Sometimes primary care physicians can work with the specialist to follow blood work or see you more immediately but they should not be prescribing for you or managing your MS by themselves. Physician Assistants and Nurse Practitioners can also prescribe medications for you but should be collaborating with an MS physician specialist. Some NP’s and PA’s have made a specialty of MS and follow many of their MS patients themselves.

So, you need a primary care provider to take care of the whole of you. That same provider can collaborate with your MS specialist, even if they are a distance away. This is part of setting up your team. The hard part is making a trip to see that specialist. I hope you’ll be able to manage that. There may be several MS issues the specialist may identify that you can work on once you return home. This may enlarge your team, but using local resources.

I wish you good luck with your efforts. Good for you for making goals and reaching for them.

Question submitted by Denise., CAN DO Program Graduate

Registered Dietitian’s Response
Denise Nowack, RD
Can Do MS Programs Consultant

Eating well doesn't have to take a bite into your budget. A little work up front can save you time and money down the road. Here are some tips to keep a few pennies in your pocket without compromising your health.

Have a plan.
Look for healthy recipe ideas using budget-conscious ingredients. (Search the internet using the ingredient as the key word.) Create a master shopping list to keep your refrigerator and pantry filled with staples that are quick and easy to cook, and kind to your wallet. These can include:
* Pastas
* Quick-cooking grains (like quinoa, couscous, brown rice)
* Canned beans (a great source of fiber and protein)
* Soups (choose reduced-sodium varieties)
* Canned & frozen fish
* Canned & frozen varieties of fruits and vegetables
* Nonfat powdered milk (use when milk is needed as an ingredient in cooking)

Shop smart.
* Clip coupons…or go online to look for discounts on the products you use most.
* Check your list and stick to it! Resist the urge to pick up “extra” items from end-of-aisle displays or at the checkout counter.
* Buy in bulk and store in ready-to-use portions. If storage space is limited consider splitting packages with a friend to take advantage of volume savings.
* Look for specials. Stock up on staples when they go on sale.
* Take advantage of fresh fruits and vegetables in season. For other produce, frozen and canned products can be good choices and just as nutritious as fresh. Opt for low-salt products and avoid those prepared in sauces or with added sugar.
* Go generic. Buying the store's brand of canned, frozen or bagged foods can provide great savings without compromising nutritional value.

Make the most out of meals.
When you have the energy to cook, double up on recipes! Freeze the extra in oven-ready containers, or use later in the week for lunches or quick dinners. Leftovers from a roasted chicken at dinner can be reinvented the next night in as chicken pesto pasta or for lunch in a chicken salad. Leftover vegetables can give canned soups, rice or pasta a nutritional boost.

While pre-cleaned and precut produce can save time and energy in the kitchen they can be more expensive than their standard counterparts. Go for whole fruits and vegetables and cut them up yourself. Chop and package them in common portion sizes for the recipes you use most, or slice and store them for an easy snack.

Be a savvy snacker.
Healthy snacking can be your best friend in managing fatigue. However, single-serving snack foods can be costly. Create your own individuals snack packs. Make them in advance and package in individual snack bags so you can “grab & go.”

Question submitted by Dan Melfi, 2011 CAN DO Program Graduate

Nutritionist's Response
Baldwin Sanders, MS, LD, RDN
Can Do MS Programs Consultant

Vitamin D is a fat soluble vitamin most famous for its role, along with calcium, in bone density. It is actually a hormone because it can be manufactured in the skin, with the exposure to sunlight. Whether you receive your vitamin D from sun or food, it must be activated by the liver and then the kidney to function. The active form of vitamin D is Calcitriol. We obtain 80 to 100% of our vitamin D from sun exposure. The amount of sun needed depends on skin color, age, season, location and time of day. Generally, 15 minutes of sun exposure to hands, face and arms is adequate to synthesize the vitamin D precursor that is required. Seniors and those with dark skin need about 5 times as much. Other things that may affect your ability to absorb sunlight are pollution, geographic latitude, cloud cover, window glass, intestinal and kidney disease. There are few dietary sources of vitamin D. In the US, we fortify milk with 400 IU per quart by law, so all dairy products are good sources. Fatty fish are another good source. The Recommended Dietary Allowances for calcium have recently been increased to 600 IU for ages 1 – 70 years, and 800 IU for those over 70 years. One cup of milk contains 400 IU. Meeting the vitamin D RDAs may be difficult for people with lactose intolerance.

The main function of vitamin D is to maintain a normal calcium range and prevent rickets and osteoporosis. More recently, vitamin D is being studied as an important immune modulator in Multiple sclerosis. Low vitamin D levels are associated with a higher risk for MS. The geographic distribution of MS adds evidence as areas with more sunlight have a lower incidence of MS. Many physicians with MS clients are monitoring their blood levels of vitamin D and prescribing supplements. Please note: Blood levels should be monitored, and people should not dose themselves with Vitamin D without a physician's supervision.

Neurologist's Response
Barbara Giesser, MD
Can Do MS Programs Consultant

Vitamin D is gaining increasing recognition as an agent that has immuno modulating and anti-inflammatory effects. There are studies that indicate that sun exposure and Vitamin D levels early in life may influence a person's risk of getting MS, i.e. less sun and lower Vitamin D levels are correlated with increased risk. For persons who already have MS, there is data that suggests that lower Vitamin D levels may increase the chance of an exacerbation.

Question submitted by Ann, 2007 CAN DO Program participant

Urologist Response
Dr. Susan Kalota, Urology
Can Do MS Programs Consultant

In general self catheterization decreases the number of symptomatic infection. It is much safer than an indwelling catheter. The idea is to completely drain the bladder several times per day. Bacteria will often be introduced into the bladder but they tend to live there without causing problems (colonization). Non urologists often confuse colonization with infection. If there are no symptoms of infection and the organism is not Proteus, the bacteria should not be treated. If someone is getting frequent symptomatic infections they need to make sure their technique is good, that they are not having problems with a spastic bladder and they should then make sure they are using a new catheter each time.

Physical Therapist Response
Kit Concilus PT, MS, OCS
Can Do MS Programs Consultant

I am glad to hear that you are still walking your dog. You are right about exercise being very important for you.

It sounds like it would be helpful for you to analyze what specifically is making the activity of walking the dog more difficult for you. It may be that you are experiencing problems with balance, endurance, coordination, fatigue, spasticity, muscle weakness, muscle tightness, joint stiffness, or some combination of these things. You can talk in detail with your doctor to help figure out which is affecting your dog walking the most, and come up with a plan to improve the situation. Sometimes subtle improvement in one of these areas can make a big difference in function. Maybe medication, exercise, bracing or other options can help you meet your goal. You can discuss the possibility of working with a physiatrist (doctor who specializes in rehabilitation) too.

My guess is that you could benefit from working with a physical therapist who is familiar with Multiple Sclerosis at this point. Therapists love to work with people who come to them with a clear, measurable goal such as "I want to be able to walk my dog for (so many) minutes." Your physician can help you find the physical therapist. The therapist can measure your walking speed, take a close look at your musculoskeletal status and walking pattern, and develop a home exercise program that will help improve your ability to walk your dog, and fit into your lifestyle. During this process, remember to focus on what you CAN do. Happy dog walking!


Physical Therapist Response
Jane L. Wetzel PT, PhD
Can Do MS Programs Consultant

Exercise may improve all types of gait dysfunction in persons with MS.1 Muscles must be strengthened according to the amount of force they are able to produce. Aggressive exercise may actually make some muscles weaker. Resistive exercise for muscles that are graded 4/5 (60% of Normal) or 5/5 will actually help reduce overall fatigue and help your body compensate for those muscles that are unable to work against gravity (2/5 [10% of Normal] or less). However, if muscles are very weak (3/5 [20-30% of Normal] or less) orthoses are important to help protect the weak muscle and prevent overuse – especially during periods of exacerbation. Overworking weak muscles with exercise or ambulation without a leg brace may make the muscle weaker. Assistive devices and balance training may reduce gait dysfunction from imbalance.

Electrical stimulation may be used as a method of strengthening weak muscles. An investigation on the effect of 8 weeks of surface Functional Electrical Stimulation (FES) training to the quadriceps on the levels of general, central, and peripheral fatigue in MS patients revealed that general fatigue, central and peripheral fatigue and impact of fatigue significantly improved [Fatigue Index: FI (p = 0.01), Central Fatigue Index:CFI (p = 0.02), and Modified Fatigue Impact Scale:MFIS (p = 0.02)] after FES training.2 In this study it is likely that increasing strength helped improve the stronger muscles and decreased the amount of total contraction time of muscles during gait. Less contraction time happens when you move more efficiently and this means there is less chance for fatigue.

You can use electrical stimulation while moving light resistance to assist in strengthening your muscles for 3/5 muscles. However, long-term resistance training with electrical stimulation is no better than traditional strength training for improving function.3 One study recently demonstrated an improvement in EDSS score. Individuals with MS in this study had on average an EDSS score of 5.9 (range, 4.5-6.5). They received electrical stimulation for 140 days (range, 22-495). Mean EDSS scores improved by 0.78 (range, 0-2.0).4

Electrical stimulation may also be used as an orthotic in gait. There is evidence that walking with an FES stimulator may actually strengthen central nervous system connections as well as assist in the activation of weak muscles.5 Walking speed increased with the stimulator off (therapeutic effect) by 24% (P = .008) and 7% (P = .014) in the non-progressive and progressive groups, respectively. So it appears that individuals with non-progressive neurological conditions (like stroke) will receive a greater benefit in terms of improving central nervous system connections than people with MS who have a progressive condition. Another study examined patients with secondary progressive MS placed in one of two groups (home exercise vs. electrical stimulation). Those individuals who were given the home exercise program had significant improvements in their walking speed over 10 meters and distance walked in 3 minutes than those using FES training. Those with FES training did not have a significant improvement after 18 weeks of exercise6 when walking was tested without the stimulator in use.

However, the group using FES as an orthotic walked much faster with the FES than without the FES. So there is clearly a functional benefit. However, once the orthotic is off (walking to the bathroom at night) the PT guided exercise program offered greater improvement. There are many times when someone with MS and foot drop may need to move around without the stimulator.

What can you do with all this research??? Find a good physical therapist who has good knowledge of MS and who has examined your muscle strength in detail. If electrical stimulation is able to assist in clearing your foot during gait then it may be a wonderful tool to help you walk better. If your MS is involving your hip and knee flexion you may not find as much benefit from electrical stimulation designed to assist foot drop (common peroneal n. stimulation). Consider working on strengthening all muscles that are 4/5 or better in your hip and knee. This may reduce your fatigue. Be sure to work with your therapist so you know which muscles to try to strengthen and which muscles should really be protected (especially during an exacerbation). Sometimes a solid or articulating ankle brace may be a good way to protect your ankle muscles and keep you from overworking weak muscles. It may also allow you to safely clear your foot. Pay attention to all your symptoms whenever you try a new brace or a new exercise. If the new exercise makes you weak then let your therapist know. Exercises will need to be modified several times before the right strengthening program is achieved.

References:

  1. Cameron MH. Wagner JM. Gait abnormalities in multiple sclerosis: pathogenesis, evaluation, and advances in treatment. Current Neurology & Neuroscience Reports. 11(5):507-15, 2011 Oct.
  2. Chang YJ. Hsu MJ. Chen SM. Lin CH. Wong AM. Decreased central fatigue in multiple sclerosis patients after 8 weeks of surface functional electrical stimulation. Journal of Rehabilitation Research & Development. 48(5):555-64, 2011.
  3. Broekmans T. Roelants M. Feys P. Alders G. Gijbels D. Hanssen I. Stinissen P. Eijnde BO. Effects of long-term resistance training and simultaneous electro-stimulation on muscle strength and functional mobility in multiple sclerosis. Multiple Sclerosis. 2011;17(4):468-77.
  4. Wahls TL. Reese D. Kaplan D. Darling WG. Rehabilitation with neuromuscular electrical stimulation leads to functional gains in ambulation in patients with secondary progressive and primary progressive multiple sclerosis: a case series report. Journal of Alternative & Complementary Medicine. 2010;16(12):1343-9.
  5. Everaert DG. Thompson AK. Chong SL. Stein RB. Does functional electrical stimulation for foot drop strengthen corticospinal connections? Neurorehabilitation & Neural Repair. 2010; 24(2):168-77.
  6. Barrett CL. Mann GE. Taylor PN. Strike P. A randomized trial to investigate the effects of functional electrical stimulation and therapeutic exercise on walking performance for people with multiple sclerosis. Multiple Sclerosis. 2009; 15(4):493-504.

Neurologist Response
John Schafer, MD
Can Do MS Programs Consultant

Trigeminal neuralgia is caused by irritation of the trigeminal nerve as it arises from the brainstem (the part of the brain roughly behind one's ear). The pain is felt not at this site of irritation but rather "downstream" at the end of the trigeminal nerve in the face and jaw. The pain of trigeminal neuralgia is very distinctive and consists of sudden, brief jolts of pain, described by many as like an electrical shock. These jolts may occur in isolation or in trains, one after the other. Often a milder pain is present even between the jolts. Trigeminal neuralgia may occur in bouts, present for weeks or months and then disappearing completely, though it may recur again and sometime in the future, and not all with trigeminal neuralgia experience these remissions.

The jolts of pain are often triggered by mechanical stimulation in the area of the pain. Most commonly, touching along the side of the nose, chewing or even talking trigger the jolts of pain, leading some with this disorder to stop washing their face or even stop talking or eating.

Because there are so many triggers to the jolts of pain, devices to relieve the mechanical triggers, including braces, would not likely solve more than a small part of the problem. Additionally, these types of triggers may change over time.

The most effective treatment for trigeminal neuralgia are medications. Carbamazepine and oxcarbazepine, in particular, almost always stop the pain, often dramatically, though they may cause side effects which limit their use in some people. Other medications may be helpful in some individuals. Several surgical procedures are available which may bring relief for some.

Neurologists tend to be the most well versed in causes and treatments of trigeminal neuralgia. Information about the disorder and help in locating a neurologist are available through the website of the Trigeminal Neuralgia Association: http://www.fpa-support.org/.

Neurologist Response
David E. Jones, MD
Can Do MS Programs Consultant

The first tip is to ensure that your deafness is due to multiple sclerosis because unfortunately, it is common for every symptom that an MS patient may experience to be attributed to the disease. Hearing loss can occur because of issues with the sound conduction system in the middle ear, because of inability to translate sound waves into electrical singles in the inner ear (cochlea), or issues with transferring these electrical signals to the brain, the organ that can be affected by multiple sclerosis, for interpretation of these signals.

Indeed, hearing loss is a very common issue, with some estimates suggesting up to 10% of the population has some hearing deficits. Despite this, reports of hearing loss caused by MS are distinctly uncommon, and most reports of hearing loss due to MS consist of mild symptoms affecting a single side. The VIII cranial nerves carry both auditory and vestibular information from the ear to an area of the brain called the pons which is a very congested area from the point of view of number of functions controlled. For this reason, most cases of reported hearing loss due to MS have accompanying symptoms, especially dizziness, but also potentially including clumsiness, eye movement abnormalities, or facial numbness / weakness. It is certainly possible for MS to affect interpretation of signals from the ear, especially at a level higher than the pons, although there is little data regarding this.

Besides a comprehensive hearing evaluation to ensure that the deafness is not due to another problem, there are ways to compensate for this problem beyond hearing aides. Many of these are potentially simple, including attempting to reduce amount of peripheral noise, looking at the individual speaking and improving skills at interpreting non-verbal communication, acknowledging the problem (it is OK to ask someone to speak up), and thinking about positioning yourself to optimize hearing (i.e, not sitting in the back row).

Speech Language Pathologist Response
Janet DeClark, MA, CCC-SLP
Can Do MS Programs Consultant

Hearing loss is an infrequent symptom of MS, but it can occur. You echo a concern expressed by many people with hearing loss, regardless of the root cause. Hearing aids do make things louder, but they can also amplify ambient sound; this interferes with the ability to weed out what's important from unusable background noise. This often results in feelings of loneliness and isolation in crowds and withdrawal from social interactions. Fortunately, there are strategies you can use to improve the situation!

  • Advocate for yourself: Explain how hearing loss/hearing aids may make it difficult for you to hear speech clearly, and let communication partners know how to help you. Ask them to face you when speaking, to enunciate their words more instead of speaking louder, and to keep hands away from their faces when talking with you. Ask a communication partner to "rephrase" instead of "repeat." People are often too polite to ask about challenges someone may be having, so addressing it in a proactive way gives them permission to discuss it and allows them to share responsibility for successful communication.
  • Modify your environment when possible to make it easier to follow conversations:
    1. Move to a quieter place with less background noise.
    2. Try to converse in a well-lit area. Much communication is non-verbal, and includes facial expressions, body language, gestures, context and situational cues. Being able to see what is being said and how it is being said can be as important as hearing it.
    3. Divide and conquer. When you are in situations where many are speaking, such as a dinner party, work within your limitations and converse with those closest to you. Speak to one or two people next to or across from you instead of trying to follow a conversation farther away.
  • Aural rehabilitation: Many speech/language pathologists and audiologists can help you with learning and employing strategies to help you hear and communicate better. Aural rehabilitation involves the above strategies along with hearing aid adjustment and refinement, learning how to listen with amplified sound, use of assistive listening devices in addition to aids, speech-reading training and mastering visual cues, help with handling conversations, and optimizing your environment to maximize hearing and communication success.

Remember to stay in touch with your care team. Notify your physician if hearing worsens significantly or suddenly, and inform the audiologist of new developments or challenges with your hearing. Know that there are many things you can do to help you hear and engage with others, making that loneliness in a crowd a rare event. Try a few of these strategies and get professional help with an audiologist or SLP if you need more individualized or intensive aural rehabilitation.

Occupational Therapist Response
Juliann Hanson-Zlatev, OTR
Can Do MS Programs Consultant

This is a good question! This can be a distressing turn of events, but the good news is that there are a variety of ways to adjust and accommodate limited handwriting.

An important aspect of making any big change in life is recognizing that there will need to be an adjustment period where the “new” form of writing will improve to the individual’s needs and satisfaction. In other words, it might take a little time and practice to come “up to speed” on a new system.

If your sister enjoys technological systems (computers, iphones, etc), then she will be in good shape to shift to technology to answer her writing/scheduling needs. Even if she is not, Apple products make using their systems very easy, and you can get a lot of help that is simple to come by to make the system work well. (You can trust me on this from experience!!)

If technology is not your sister’s favorite tool, then there are a number of handwriting assists that she could try to see if they smooth out her coordination in order to make writing useful again.

1) Technology. I have a client who is blind and uses an iphone with voice activation to write and send emails, texts, schedule and make calls. As you can imagine, this includes limited interaction with the keyboard as well. A computer can be used with voice recognition software also.

2) Sometimes keyboarding is actually easier than writing because upper arms can be stabilized while typing, and at that point, I recommend switching to a computer that interfaces with your phone to schedule, write notes, etc. since the information can be easily shared between devices. Again, I am an Apple fan, simply because their products are simple and easy to use, but the other businesses do this well, too! She may want to see if using her finger on a Smartphone is easier vs. using a stylus. I would encourage her to try both to see what works best for her.

3) Hand-writing Tools: There are a number of products out on the market to help with handwriting, and this is best decided by use. Your sister may wish to visit a local outpatient OT to see what they have available or to discuss her situation specifically for specific recommendations. A few of the choices:

1- pencil/pen grips
2- weighted pens
3- easy glide writer
4- ergowriter
5- klick pencil holder
6- ring pens
7- magnetic pens
8- claw pen
9- wrist hold down

As you can see, there a multitude of choices, some of which may be ideal for your sister and some of this would not be ideal. If she decided to pursue a handwriting aide or tool, I would recommend a visit to an occupational therapist to exercise her options. Sometimes using a slanted writing board can be helpful, in addition to coordination and strengthening exercises!

I had a client whose handwriting became very challenging, but after a short rehab program involving coordination, strengthening and stretching, she was able to write again to her satisfaction.

I hope this answer has been helpful for you and I thank you for asking a good question, since it is usually a disruption of the “little” events in our life that cause us considerable frustration!

Speech Language Pathologist Response
Pamela H. Miller, MA, CCC-SLP, MSCS
Can Do MS Programs Consultant

People with multiple sclerosis may have difficulty with speaking clearly because of weakness or in-coordination of the lips, tongue and soft palate. Reduced breath support and control may also result in inadequate loudness. The medical term for this motor speech disorder is dysarthria.
Exercises of the lips and tongue have been tried (such as, alternating a pucker and smile, or tongue out, in, left, right, lick your lips around in a circle, then change directions). However, oral exercises have not been proven beneficial. Diaphragmatic breathing exercises may be helpful for teaching better awareness of filling your lungs fully for improved loudness. To do this, put your hand on your diaphragm. breathe OUT fully, breathe IN through your nose (Repeat 6x). You should feel your hand move in and out at your diaphragm level, as you exhale-inhale fully.

Learning new dysarthria techniques by combining better ways of using your muscles for respiration and articulation DURING speech is the recommendation. The strategies that are helpful for most people, to aid speech intelligibility and loudness follow:

  • Fill your lungs fully
  • Speak louder and slower
  • Exaggerate your mouth movements
  • Say all the sounds in each word
  • Self-evaluate and self-correct

The above techniques should be practiced progressively at the read aloud word, then sentence levels, and ultimately during conversation. A speech pathologist can evaluate your specific problems and design an individualized treatment program for you. In some cases, a portable voice amplifier and/or other communication device may be prescribed.

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Registered Nurse Response
Jennifer Smrtka, ANP-BC, MSCN
Can Do MS Programs Consultant

This is a common concern among women of childbearing years diagnosed with MS. In a study published in 2011 Annals of Neurology and conducted in British Columbia, Canada, adverse pregnancy or birth outcomes did not differ among more than 400 women with MS, when compared with more than 2,000 women without the disease. (Mia L. van der Kop, MSc, Helen Tremlett, PhD and colleagues (University of British Columbia, Vancouver). Although, it is important to let your obstetrician know you have MS so that he can collaborate with your MS specialist during your pregnancy.

Historically, women were discouraged from pregnancy because there was a misconception that the stress of pregnancy would increase MS symptoms and worsen the disease state. However, there is no evidence to suggest the MS impedes fertility, pregnancy, or birth outcomes. There are multiple large studies that demonstrated pregnancy, labor & delivery, and incidence of complications are no different between women with MS and healthy control groups. In fact, women who become pregnant after the onset of MS may have a decreased risk of transitioning from relapsing-remitting to secondary-progressive MS as compared to women who do not become pregnant (Runmaker & Andersen, 1995)

Furthermore, we now know that pregnancy actually seems to have a neuroprotective effect for the mother with MS. The risk of relapse drops over the nine months of pregnancy (with the risk being lowest in the third trimester due to hormone levels). If there is a relapse during pregnancy, methylprednisolone may be used after the first trimester. After the mother delivers, there is a precipitous drop in the protective hormone levels and she may be more at risk of having a relapse. The more active a woman’s disease is during pregnancy and the year prior, the higher her risk of postpartum relapse (Vukusic et al., 2004).

Research suggests that MS has a genetic component, however it seems relatively small. Studies indicate that there is a 3-5% lifetime chance of developing MS for children born of women with MS. It recommended that you discuss conception with your MS specialist ideally before conceiving so that necessary preparations can be instituted. It is recommended to discontinue disease modifying therapies one to two menstrual cycles prior to conceiving if possible. If you become pregnant while on disease modifying therapies it is recommended you contact your MS specialist immediately to ensure the best outcome for your pregnancy. There is a national pregnancy registry with the National MS Society as well as registries for each drug company to monitor outcomes in the event conception and pregnancy occur while on medications.

Additionally, there is no evidence that breastfeeding increases relapses. However, it is recommended you remain off disease modifying therapies because it has not been established whether these drugs affect breast milk and if they are potentially passed to the infant. (Vukusic & Confavreux, 2006) And most importantly, is to take good care of yourself while pregnant and breastfeeding. Eating balanced meals, staying hydrated, getting adequate sleep and having a good support system is imperative for any mother, but especially for the mother with MS as she transitions into parenthood.

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Speech Language Pathologist Response
Jeff Hodgson, SLP
Can Do MS Programs Consultant

This is a very relevant question for people with MS! Swallowing difficulties (medically termed as “dysphagia”) can be fairly common with people living with MS. Most of the literature will cite that between 30-40% of people with MS as having some form of swallowing difficulty. The changes to swallowing can be very subtle and hardly noticeable to quite profound and significantly affecting quality of life. The more severe forms of dysphagia typically will manifest in more advanced disease or in later age. Changes to swallowing can affect eating pleasure and become quite irksome, but the main medical concerns are for malnutrition and dehydration as a result of decreased intake as well as the concern for aspiration pnuemonia, resulting from food, liquid or saliva entering the windpipe and lungs.

Many people may find techniques that work for them in improving their swallow efficiency. A fairly common strategy is to press the tongue against the hard palate during the swallow to increase the force and propulsion of the swallow. To truly know what techniques or strategies may help your particular swallowing difficulty (and there are A LOT of strategies or techniques that can be utilized!), I would advise a swallow evaluation with a speech therapist that specializes in dysphagia (likely through your local hospital). They would likely recommend a Modified Barium Swallow Study or videofluouroscopic swallow evaluation, where your swallow can be evaluated under x-ray in order to determine the abnormal (if any) characteristics of your swallow and to try various strategies or techniques under x-ray in order to determine what will work best for you.

To get at the root of your specific problem, I would advise you to discuss a referral to a dysphagia specialist with your primary care physician or neurologist.

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Physical Therapist Response
Steve Molloy, PT
Can Do MS Programs Consultant

When it comes to juggling the demands of your personal life and career, finding the best way to include exercise in the equation can be quite a challenge. Throw the MS wildcard into the mix, and your equation is even more complicated. Unfortunately, there is no single exercise routine or schedule that is right for every person. The right exercise schedule for you is the one that works for you right now.

With this being said, I advise you to consult your physician and other health care providers to see if they have any specific concerns or precautions for you before you begin any exercise routine. Assuming they give you the all clear, my advice is listed below.

If you are just getting started, my advice is to start small and celebrate your success. Pick something you can do safely and easily, and then commit a small period of time to perform the activity several times a week. You get the biggest benefit in fitness when you change from doing nothing to doing something. You may start with 3-5 minutes of something easy, but the key thing is to get started. Remember you are exercising for you, and 3-5 minutes is more than 0 minutes from last week.

It may take some experimentation to hit the right combination of activities, frequency, intensity and duration that best supports your mission to lead a healthy, balanced life. I like to think of your exercise routine as a tool you will use to help keep your systems moving in the right direction.

ATCDT July 14 QuestionThe goal should be to adjust your exercise routine so that it gives you the best shot at reaching your sweet spot at the positive ends of these scales. Where you are today, this week, this month, may be different in the future. As your reality changes, you may need to change your exercise routine. You should always start this process by asking yourself, “What will keep/get me moving toward the positive end of these scales?”

I provide some concrete recommendations that apply to anyone designing or modifying an exercise routine:

Fun
If you are anything like me, motivation lags when exercise is a chore. Pick something that is enjoyable. Are there any exercise activities that you like doing? Are there any exercise groups you might like to be a part of?

Feasible
If the exercise activities you select are too much of a project, the odds of them ever becoming part of a routine are slim. Look for activities that don’t require you to move heaven and earth to make them happen. You are better off with simple exercises you can actually do.
When you are selecting an activity you should consider the following:

  • Is this something that is safe for me to do?
  • Is this activity easily accessible?
  • Do I need another person to perform this activity?
  • Can I manage this in my usual schedule without making unhealthy decisions regarding my health and relationships?

Frequent
Sporadic exercise is not an effective way to improve your conditioning. Hit and miss exercise sessions increase your risk of injury and won’t provide you with the gains you are looking for.

Fatigue Friendly
Remember, you are exercising to improve your health and well-being. Listen to your body and don’t go beyond your limits. Nothing is gained if your great workout wipes you out of life for the rest of the day!

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Nurse Practitioner Response
Lynn Stazzone, RN, BSN, MSN, NP
Can Do MS Programs Consultant

Thanks so much for your question. Bowel dysfunction can be characterized as constipation, involuntary defecation, or diarrhea. It is a common symptom in MS but probably underreported due to the nature of the problem. It can exacerbate limb spasticity and bladder dysfunction. Demyelination in the brain and/or spinal cord may interfere with nerve transmission which can effect voluntary motor function and impair anorectal sensation and reflexes. Generalized outside factors need to be taken into consideration including altered diet, impaired mobility, other diseases such as crohns or colitis, and adverse drug effects.

Without knowing your specific problems I will review general considerations. The basic intention of any management program is to establish a scheduled defecation pattern by utilizing any changes of diet and lifestyle before utilizing laxatives ,suppositories, or constipating agents. Pre-MS patterns and individual variations are important to consider in any bowel program.

For constipation, an adequate diet of fiber and fluids combined with timed evacuation and stool softeners is beneficial. If at all possible try taking less constipating medications such as anticholinergics (such as Oxybutinin), diuretics, and muscle relaxants while balancing the need to treat other symptoms of MS. Oral and rectal stimulants can be used occasionally, but harsh laxatives should be limited.

Diarrhea can be the result of the overuse of laxatives. Poor muscle control and loose stool results in incontinence, so caffeine intake as well as artificial sweeteners and sorbitol should be limited. A warm drink and a small meal in the morning as well as abdominal massage may elicit a bowel response which may accelerate stool to move. Bulk forming agents may also be useful.

There have been reports that biofeedback may improve constipation and incontinence in those patients with a limited degree of disability.

All this being said everyone is a unique individual and needs to talk with their healthcare provider to come up with an individualized care plan that works towards the goal of success.

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Physical Therapist Answer
Kathy SanMartino, PT, NCS, MSCS
Can Do MS Programs Consultant

Exercise can improve your ability to walk. You want to be sure you’re doing the right exercises and performing them the correct way. It is also important to assess whether bracing and/or using an assistive device will improve your walking ability. There are many variables that can adversely affect your walking ability.

Having a good exercise program is important for managing your MS and maintaining your walking ability. A good comprehensive exercise program should include stretching exercises, strengthening exercises, balance and aerobic exercises. To avoid exacerbating fatigue issues, we tend to be conservative when creating an exercise program for individuals with MS. We try to prioritize what exercises are necessary and will try to choose exercises that will address several muscles at once. It is advisable that you see a physical therapist who can analyze your walking to assess what muscles need to be stretched and which ones need to be strengthened.

Let’s look at this example. In order to advance your leg with as little effort as possible, you must be able to bend the knee sufficiently when advancing the leg. If the muscles in the back of the thigh (hamstrings) are not strong enough, this can impede your ability to bend the knee. If the front of the thigh (quads) is spastic, it may be difficult to relax it to allow your knee to bend. In other words, not only will the hamstring have to lift the weight of the lower leg, but it will also have to fight the quads which are trying to keep the knee straight. This quad spasticity can come in handy, however, as it can keep your knee from collapsing as you’re standing on this leg. In this scenario, it would be advisable to stretch the quads to diminish the spasticity (or prevent its worsening) and strengthen the hamstrings. There are several versions of these exercises. A physical therapist could help you determine the most effective version for you and insure that you are performing the exercises accurately.

As I mentioned above, it is also important to perform exercises that help to improve your balance. If you can improve your balance, then this is one less issue that you are fighting when you walk. Sometimes balance exercises are as straightforward as working on your ability to shift your weight from one leg to the other. As walking becomes more laborious, it is easy to forget the mechanics of normal weight shifting.

It is also advisable that you see a physical therapist to determine if bracing and/or an assistive device would be beneficial. Basically, we’re looking for whatever devices are needed to make you walk more ‘normally’ When you are walking more ‘normally’, you will be walking with less energy, a decreased fall risk and decreased spasticity. Spasticity generally increases in proportion to the degree of challenge of an activity. An AFO can help you lift your toes. This often will help the rest of your leg advance easier and with less effort. An AFO will also relax any spasticity in the calf muscle. This in turn can help relax the spasticity in the rest of your leg. A Hip Flexion Assist Device can help you lift your leg and advance it with less effort which will also decrease the spasticity in the leg. An assistive device can assist with your balance and also decrease the challenge of walking (and decrease your spasticity).

An aerobic exercise program is important for heart health but also to improve your endurance. You probably notice that your walking is less than ideal when you are fatigued. With aerobic training, it will hopefully take more activity before you experience fatigue.

A PT can look at all these issues and help you put together the best approach to improve your walking.

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Nurse Practitioner Response
Stephanie Buxhoeveden, NP
Can Do MS Programs Consultant

Extreme sensitivity to noise is also known as hyperacusis. With hyperacusis, typically high-pitched and loud noises such as smoke alarms, clapping, and car horns are the most painful. The pain can be so severe that some people become afraid to leave the house, so it can greatly impact your quality of life.

A demyelinating MS lesion in the central auditory pathway can cause hyperacusis, but there are also other conditions unrelated to MS that can cause the condition, too. Therefore, an evaluation by your neurologist is essential. They may recommend that you consult an Ear, Nose, and Throat Specialist (ENT) for a comprehensive hearing evaluation in order to ensure that the hyperacusis is not being caused by another condition.

It is also important to promptly notify your neurologist if this is a new symptom for you. Any new or worsening symptom that persists for over 24 hours, and cannot be attributed to another cause, could be a relapse. If your pain is caused by a relapse it may improve over time as you recover from the attack. However, if the hyperacusis persists there are treatment options. Selective serotonin repute inhibitors (SSRI’s) are a type of antidepressant medication which can decrease sound sensitivity and pain. Additionally acoustic retraining therapy can help decrease the sound sensitivity, and help you cope with the condition.

Psychologist Response
Deborah Miller, PhD
Can Do MS Programs Consultant

First, the person should explore options for general health, including mental health, insurance through their state or the Federal Insurance Market Place. You can locate this agency online at https://www.healthcare.gov/get-coverage/. On the site, select the state of your residence in the dropdown menu.

We know from literature that the best approach to managing depressions is counseling, medication, and exercise. If an individual is truly locked out of obtaining mental health insurance, there are number of potential options for addressing each of these treatment components. For free/sliding scale counseling services, contact the National Multiple Sclerosis Society at 1-800-FIGHT-MS to determine what counseling services are offered. Other options are to contact the United Way to learn about community mental health agencies that provide free or sliding scale counseling services. Many community mental health agencies and free clinics include physician care, and those doctors evaluate a person’s mental health status and can provide prescriptions for antidepressants and information about pharmaceutical drug assistance programs. Finally, the National Multiple Sclerosis Society has great information in print and online about exercise options for people with MS. To access these resources, please click here.

All of these recommendations require motivation and energy, two commodities that are probably in short supply for someone with MS who has depression. It may be very difficult for someone in that situation to follow through on these recommendations. The first step for such a person is to reach out to a family member or friend, acknowledge the depression, and ask for help. Partnering with a support person is a positive first step in this road to treating depression.

Neurologist Response
David E. Jones, MD
Can Do MS Programs Consultant

MRI (magnetic resonance imaging) is an imaging technique in which oscillations of a strong magnet cause the body tissue being imaged to release a radio frequency that can be measured by a receiving coil. There is no ionizing radiation involved with this technique as there is with X-rays or CT scans. MRI is felt to be safe in most situations. MRI is contraindicated if a patient has indwelling iron (or other metallic foreign bodies, including some medical devices), and caution is used when imaging pregnant women, although a harmful effect of MRI on the fetus has yet to be shown. The contrast used in MRI is gadolineum, which is an elemental rare-earth metal; the form of gadolinium used in MRI is chelated and is not radioactive. Typically gadolinium is felt to be safe. Allergic reactions to gadolinium are uncommon, and a rare kidney injury (nephrogenic systemic fibrosis) can occur in patients with poor kidney function who are given gadolinium.

Neurologist Response
John Schafer, MD
Can Do MS Programs Consultant

Until very recently, no medications have been shown to be beneficial for progressive forms of multiple sclerosis. However, on September 27th, Genentech announced that a Phase III study of ocrelizumab met the primary endpoint in a study of primary progressive MS. Ocrelizumab is the first investigational medicine to show positive study results in both primary progressive and relapsing forms of multiple sclerosis. Genentech will submit data to the US Food and Drug Administration for both forms of multiple sclerosis in early 2016. This is an exciting announcement, and we look forward to further details.

Please visit Can Do MS’s website to learn more about results from Genentech’s ocrelizumab drug by going to http://www.mscando.org/about-can-do-ms/press-room/industry-related-news/.