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.
It makes me sad when I read stories about people that can run or ride a bicycle when most of us with Primary Progressive MS have lost that ability. I used to be a very active person, and I want to know what people like me are doing now to cope. The devastation of not being able to use my limbs – coupled with reading stories of other people swimming and hiking and bicycling- only bring me despair.
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.
I am looking for yoga classes in my area for MS people. Can you help me?
Adaptive Yoga Instructor
Founder of Bamboo Yoga Studio
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 firstname.lastname@example.org.
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.
I am a yoga teacher. In the last month or so, I've started seeing more students living with MS attend my classes - which is great! Do you have any recommendations or tips you can offer on specific sequences or poses designed for challenges such as fatigue, problems with digestion, or balance? This will help me adapt my teaching style, so I can give people with MS in my class more options.Thanks and Namaste!
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.