Are there guidelines for exercising when you have TM?

Many of my patients tell me that they don’t exercise because, “they don’t know what exercises to do.” This is a curious problem. On the one hand not exercising is a safe solution, after all, if you don’t know what the proper exercise is then maybe you will be hurting yourself if you push yourself to exercise, especially if you have a chronic condition like transverse myelitis (TM). On the other hand, if you don’t do anything at all, with or without TM, you are limiting your overall health. Over the years I have had many discussions with patients about this topic and have come to realize that the answer is difficult in part because getting regular exercise is hard work, fatiguing, time consuming, etc, for anyone, and often much harder for someone who has difficulty moving their body. Only 20.4% of adults in the United States actually met the federal physical activity guidelines in 2010. In fact, the CDC found that fewer than two in 10.

Americans get the recommended levels of exercise, and more than a quarter of U.S. adults do not devote any time to physical activity. Federal guidelines call for 150 minutes of moderate to vigorous physical activity every week, including two days of full-body strengthening.

Those guidelines are for the average healthy person, how does someone with TM interpret them? How much exercise does a person with TM need? There is clear evidence that the effects of TM can result in decreased endurance, pain, decreased walking stability, and make life tasks more difficult. In addition, there is rising evidence that exercise may have natural re-myelination capabilities.

However, the heterogeneity of the disease and the multitude of symptoms that accompany it make it difficult to determine concrete guidelines for exercise. As a movement scientist who studies exercise and its effects on walking and balance for individuals I have a vested interest in keeping up with the scientific evidence about this very topic. Based on the evidence that I am aware of most people with TM should prioritize physical exercise along with appropriate pharmaceutical medications.

It is important to have some flexibility in modifying the federal exercise guidelines to allow for more of an individualized plan. Changes such as exercising for shorter periods, planning rest breaks to allow for faster recovery from exercise bouts, and keeping core temperatures as cool as possible while raising your heart rate are all simple considerations that can make exercise more easily tolerated. The primary thing I suggest to my patients is that they should do whatever type of exercise they enjoy because the theory is that if you enjoy it you are more likely to prioritize it in your busy schedule. Since we don’t know exactly what types of exercise are most helpful to someone with TM, combining some aerobic and some strengthening exercise is ideal. Individuals with TM should be given more guidance on how to maximize their current energy levels and should seek out professionals such as occupational therapists (OT) who can provide concrete steps for managing or modifying daily tasks that have become more difficult. It is also important to consider the addition of technology, such as functional electrical stimulation, for strengthening the lower extremities or at least preventing further loss of muscle strength, and focusing more on the upper extremities for aerobic benefits, much of this can be learned from a good physical therapist (PT).

The health benefits gained from regular exercise are well known, from improving cardiovascular health, bone density, strength, cognition and emotional well being, to name a few. All of these should be a priority for people with TM but a primary problem still lies in convincing people to exercise, and to do it on a regular basis. For now, keep in mind that the evidence supports the idea that individuals with TM should be getting regular daily exercise. You can pick what that exercise is, keep it safe and enjoy it, your body deserves some movement time.

Kathy Zackowski, PhD, OTR
Kennedy Krieger Institute
Departments Physical Medicine & Rehab, Neurology
Johns Hopkins University School of Medicine