Questions and Answers
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.
My sister has MS and I can’t understand what she says when she talks. Are speech problems common in MS? How can I tell my sister about these problems? What can I suggest that may help her?
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.
Is MS a result of a malfunction in the brain or in the spinal cord?
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.
Over the last few years, I have noticed a significant increase in my forgetfulness, disorganization, and clumsiness. At the same time, I have all but lost my sex drive. Are these symptoms “normal” for MS? I just need to figure out what is wrong with me! It’s like my doctor has given up; all they want to do is prescribe me more pills. Is there anything else that may work?
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."
Can exercise improve cognitive problems?
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.
I have cognitive/memory issues that are affecting my performance at work. Fearing that I am close to losing my job, I am currently applying for new job opportunities. However, I am concerned that I am going to have the same issues with my new employer. I have difficulty with organization skills and remembering tasks. If you have any suggestions, they would be greatly appreciated!
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.
I'm on Avonex and take my shot on Monday. I have accepted the fact I lose Monday and Tuesday to the flu symptoms. My husband and son have learned these are "MS Monster days" and to let it run its course. Emotionally I feel lost, behind on life and feel as if I have to get so much done and push myself until I am where I am in a cycle of exhaustion, cognitive confusion, and my body is in spasticity, pain which leads back to sleep. How can I stop this cycle and what tools best help keep persons like me caught up and not so disorganized to accomplishing organization within life’s tasks that occur daily? Even this is scatter brain...
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.