Exercise is an important part of multiple sclerosis management. Exercise not only helps cardiovascular health, it can increase strength and flexibility, reduce spasticity and fatigue, and improve self-efficacy and mental well-being. Recent research has shown that exercise also can promote remyelination and brain repair in mouse studies.
Exercise: It does a body good
What constitutes exercise may differ dramatically from one person with MS to another. What is an appropriate exercise for me may be dangerous and highly inappropriate for you, or might be sorely insufficient and too easy for someone else with greater physical abilities than either of us. Just as people with MS are unique with our symptoms and disease course, our individual needs for exercise and/or rehabilitation can vary considerably as well. There is no one-size-fits-all when it comes to physical activity.
Does your doctor talk to you about exercise?
I asked a few MS friends if their doctors ever discussed exercise recommendations. The responses ranged from “I would just like for my neurologist to give me the hope of doing exercise but he’s already written it off and condemned me to a chair” to “I don’t really expect any from a neuro, but I do expect my neuro to recommend me to a PT/OT that can with help me with that.”
Another friend explained: “I don’t really expect any info from my neuro. I feel like it’s my job to bring questions about specific activities to them. Generally, I use common sense, which means I don’t need to ask them questions. They do ask my activity level and we talk about what I do, but beyond that I don’t have any expectations, unless I’m having an issue and then it’s on me to bring it up.”
Researchers in Chicago interviewed 50 people with MS to learn more about what patients need and want from healthcare providers regarding advice, support, and resources for participating in exercise. Based on nearly 40 hours of interviews and 18 submitted journals, it became evident that the amount of exercise promotion by the providers was unsatisfactory for the majority of patients with mild-to-moderate disability (≤5.5 EDSS) who engaged in varying levels of physical activity.
Interactions between patients and health care providers matter.
Almost half the participants reported not discussing exercise or physical activity with their provider at all in the previous year. The majority said they commonly discussed other clinical matters instead. Half the patients interviewed thought their discussions about exercise were minimal and that providers typically encouraged exercise in general, without offering guidance specific to their individual condition.
Patients who were less active felt they were not understood by their providers and that, at times, the exercise options providers suggested didn’t take into account their symptoms or limitations. This was considered less than helpful and not very motivating.
However, 26 percent of the participants were encouraged to exercise, by providers who gave verbal instructions, referrals to exercise programs, and written exercise plans. Ironically, these patients tended to be those who were already highly physically active.
Patients want and need information about exercise.
Participants in the study wanted their providers to promote exercise with advice, support, and resources in coordination with their other health care. Patients wanted tailored plans for exercising within their limitations and accessing exercise equipment safe to use within their physical boundaries. They wanted up-to-date information on the benefits, including specific exercises for safely managing MS symptoms and specific exercises appropriate for their level of physical disability, regardless of their stage of MS. And they expressed a desire for help with planning, goal-setting, and exercise accountability.
All these requests were more common in less active patients expressing a need for strategies to make exercise part of their lifestyle. Patients who already were sufficiently active were less likely to need the support of a health care provider, but some wanted more support from friends and family, along with detailed information that could help others with MS become exercisers too.
Another friend summed it up beautifully: “Many people with MS may not be aware of the potential for regular exercise to improve their fatigue, spasticity, muscle strength, coordination and balance. I want my neuro to do more than whack my knee with a rubber mallet and write prescriptions. Technically MS may only affect the brain and spinal cord, but that impacts your entire body and mental well-being. Doctors should be prepared to discuss everything that can help. I want my neuro to help me figure out what might work best for my unique set of symptoms, whether it’s PT, yoga, weight bearing exercise or swimming. If my doctor doesn’t have the answer, they should help me figure it out.”
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Lisa Emrich is a patient advocate, accomplished speaker, author of the award-winning blog Brass and Ivory: Life with MS and RA, and founder of the Carnival of MS Bloggers. Lisa uses her experience to educate patients, raise disease awareness, encourage self-advocacy, and support patient-centered research. Lisa frequently works with non-profit organizations and has brought the patient voice to health care conferences and meetings worldwide. Follow Lisa on Facebook, Twitter, and Pinterest.