Robert G. Miller, MD, Director, and Sandy McDade, RPT, physical therapist at the Forbes Norris ALS Research Center, San Francisco, California share their views on exercise and ALS. "Exercise has so many benefits in general that most people assume it would be a good thing for persons with ALS. Improved sleep, appetite, mood, digestion, and endorphins to name a few. Studies suggest that moderate exercise might be good for ALS but the data is inconclusive. More studies are needed for us to be sure on this point, and some excellent studies are underway which will help inform us about this important issue.
But we do have some clues about what we can do while we await more definitive studies. We can say that intense or exhaustive exercise is probably bad for persons with ALS. Animal models of ALS have shown benefit from moderate exercise, but acceleration of weakness with intense exercise. Whether we look at strengthening exercise or aerobic (cardiovascular) exercise, too much intensity is not good.
By contrast, moderate exercise has been shown to improve strength and prolong survival in animal models of ALS. It also boosted levels of nourishing brain hormones, IGF-1 and BDNF, and reduced markers of inflammation, thought to be an important mechanism in ALS.
Studies of exercise in other neuromuscular diseases (especially postpolio syndrome) have shown benefits without serious ill effects. Although there have been few, and only very small, studies of exercise in patients with ALS, each has demonstrated benefits with no negative effects. Bicycling or treadmill exercise for aerobic training has preserved functional status and prolonged survival (Pinto et al 2011). Strengthening exercise has increased muscle strength as well.
While we await further studies, at the Forbes Norris ALS Research Center in San Francisco, we counsel our patients to "Use it or lose it". Moderate exercise is the key, both in strengthening and in aerobic exercise. We recommend a cycle ergometer or a treadmill ramped up to about 70-75% maximal heart rate for about 10-20 minutes, three times per week. For strengthening, muscles that can overcome gravity and provide some resistance can be strengthened safely with moderate weight lifting (3 sets of 10 repetitions that are not too intense to complete). Muscles that are very weak should not be subjected to this kind of exercise. Daily activities are exercise enough for those muscles. Stretching (yoga, tai chi) and aqua therapy are also very useful.
For persons with ALS, this means first, listening to your body: stop when fatigue sets in, rather than pushing through it. Second, if you are sore the next day, you have overdone it. Soreness is breaking down muscle tissue, a bad thing in ALS. Moderation is the key, start low and move up slowly, and work with a physical therapist as a coach."
Lopes de Almeida, Silvestre R, Pinto AC, de Carvalho M. Exercise and ALS, Neuro Sci 2012;33:9-15.
Dalbello-Haas V, Florence JM, Krivickas LS. (2008) Therapeutic exercise for people with amyotrophic lateral sclerosis or motor neuron disease. Cochrane Database of Systematic Reviews 2, CD005229.
Pinto, A.C., Alves, M., Nogueira, A., Evangelista, T., Carvalho, J., Coelho, A., de Carvalho, M. and Sales-Luís, M.L. Can amyotrophic lateral sclerosis patients with respiratory insufficiency exercise? Journal of Neurological Sciences 1999;169, 69-75.
Forbes Norris ALS Clinic has a wonderful new resource for patients and families developed by their expert staff. Go to www.amyandpals.com for more information. They are updating this site based on what patients and families want to know more about. It covers everything from communication devices and planning to how-to breathing exercise videos.