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Exercising with a Muscle Disease

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Exercising with a Muscle Disease Spring • April — June 2009 quest.mda.org Ex Ercising with a Muscle Disease I don’t exercise. If God had wanted xercise: Love it. Hate it. Gotta do it. On me to bend over, he would have put Ethe following pages, Quest looks at Table of contents: diamonds on the floor. the many sides of exercise for people with Warning: Read Me First! (What to watch ~ Joan Rivers muscle diseases: out for when excercising) ........................ 2 • What does the research tell us? Exercise Q&A (the latest research Physical fitness is not only one of • Which types of exercises are OK and and medical advice) ................................. 3 the most important keys to a healthy which aren’t, and how can you tell the body, it is the basis of dynamic and difference? Glossary of Exercise Terms .......................... 5 creative intellectual activity. • What are other people doing — or not Recommended Exercises ~ John Fitzgerald Kennedy doing — and what are the results? in Muscle Disease (chart) ........................ 6 • And of course, the ultimate question: Is Profiles of people who If it weren’t for the fact that the TV it worth it? exercise ..........................7, 8, 9, 10, 11, 12 set and the refrigerator are so far On the next page you’ll see a box of apart, some of us wouldn’t get any warnings — please be sure to start there. Effects of Exercise on Different Muscle exercise at all. ~ Joey Adams Much of the conventional wisdom about Diseases (chart) ..................................... 13 exercising isn’t true for people with muscle What Kind of Exercises Lack of activity destroys the good diseases, and doing it wrong may cause Can Be Done By …? .............................. 15 condition of every human being, irreversible muscle damage. Exercises for Caregivers ............................ 18 while movement and methodical As you read through the exercise articles physical exercise save it and in the magazine (see the table of contents), How Do You Feel About Exercise? ............. 20 preserve it. ~ Plato one thing is clear: Each body is unique, and Exercising Will Over Despair ...................... 22 its owner knows it best. Please filter all this I really don’t think I need buns of information through your own wisdom and Adapted P.E. for Kids ................................. 23 steel. I’d be happy with buns of experience, and please share it with your Quest Tech: cinnamon. ~ Ellen DeGeneres physicians, therapists and trainers. “Wearable technology” for exercise ....... 24 And if you want to share your exercise As the Wheel Turns: experiences with others, please visit Quest Effect of sports on power chairs ............ 27 online (quest.mda.org) and post a message on the Feedback page. Because one thing is Kid Quest: definitely true about exercise: It’s more fun Are power chair sports exercise? ........... 30 when it’s shared! From Where I Sit: Am I Disabled or Aren’t I Disabled? ....... 33 1 Quest 2009, No. 2 ©2009 MDA Warning: read Me First! What to watch out for when exercising verybody agrees that exercise is a good thing — but only if undertaken safely. EHere are some warning signs that say STOP. When muscle fibers are undergoing damage, they usually — but not always — announce it pretty quickly, with cramping and pain. But sometimes muscle destruction doesn’t make itself known until enough damaged muscle fibers have released a pig- mented protein called myoglobin into the blood and eventually into the kidneys and urine. Dark, cola-colored urine hours after exercising indicates this kind of muscle destruction. Signs of muscle damage or impending muscle damage are: • cramping in muscles (probably related to insufficient energy supply for muscles) • pain in muscles • weakness of exercised muscles • dark urine that looks like cola, following exercise (seek medical care immediately if this occurs) Many muscle diseases affect the heart muscle, impairing its ability to pump blood fast enough to keep up with the demands of strenuous exercise. Others can cause an irregular heartbeat or one that’s too fast or too slow, and strenuous exercise can exacerbate these abnormalities. Signs of cardiac stress are: • shortness of breath • chest pain • very elevated heart rate (150 to 160 beats per minute) with even moderate exercise • weakness • nausea • sweating • a gurgling sound in the chest with breathing (seek medical care immediately if these symptoms occur) It can’t be stated enough: Always consult a physician before undertaking a new exercise program. ©2009 MDA 2 Quest 2009, No. 2 Exercise Q&a Q: What is exercise? Why do it? of bone density and mood elevation. A: Exercise is muscle exertion (use), Because exercise requires energy requiring the expenditure of energy. It (calorie burning), it offsets the intake can be very roughly divided into two of dietary calories and may help keep major categories: aerobic and resis- weight in check. tance (sometimes called “strengthen- ing”). Aerobic exercise helps maintain Q: What does or doesn’t the overall fitness, especially cardiac and medical literature tell us about respiratory health. If muscles are exercise and neuromuscular intact and functioning, then resis- disease? tance, or strengthening, exercise A: Unfortunately, there isn’t a lot Q helps increase muscle mass and the known about exercise in neuromus- force muscles can generate. However, cular disease, but some studies have some muscle diseases severely limit been conducted that shed some light the ability of muscles to increase on the subject. mass or force because they limit the “We know so little,” says Ted regenerative capacity of muscle tis- Abresch, director of research at sue. Additional benefits of exercise are the Research & Training Center maintenance of flexibility, preservation for Neuromuscular Disease at the University of California at Davis. (The MDA Neuromuscular Disease Clinic at UC Davis is part of the MDA Clinical Research Network that supports stud- ies in Duchenne muscular dystrophy.) Abresch says some forms of exercise are beneficial in neuromus- cular disease, but unfortunately, it’s usually not prescribed unless patients specifically ask. Studies of exercise, he says, have largely been “messy” and hard to interpret, because often there aren’t adequate control groups (groups assigned not to exercise), and because people with different dis- eases are often studied together. At his center, he says, “We’re looking at what people are actually doing, and we’re looking at wearable technolo- gies to see how much they’re walking or sitting, so we can get a baseline A stationary bike offers excellent aerobic exercise. Elastic band stretching is a good resistance exer- and then see if an exercise prescrip- cise. tion makes a difference.” (A pedom- 3 Quest 2009, No. 2 ©2009 MDA Ted Abresch, who directs the Research & Training Center for Neuromuscular Disease at UC Davis, says studies of exercise in this area have been hard to interpret. Photo: Emi Manning, UC Davis eter, which measures how many steps are, however, some general precau- a person takes, is an example of a tions to take. wearable technology. For more on Many neuromuscular diseases this subject, see page 24.) affect the heart muscle, and that adds Abresch says the only thing he an extra requirement for caution. can say with certainty is that adults Cardiac abnormalities figure promi- with slowly progressive muscular nently in many muscular dystrophies, dystrophies (such as limb-girdle, particularly Duchenne, Becker, facioscapulohumeral and myotonic myotonic and Emery-Dreifuss MDs, dystrophies) showed improvements as well as in Friedreich’s ataxia. with moderate exercise. “The one pro- If someone has a cardiomyopathy gram we did that seemed to work well (heart-muscle degeneration), the was a walking program, where we put pumping action of the heart is pedometers on people and asked them impaired, and the muscle won’t to walk 25 percent more over time respond to exercise the way a than they did initially. They reduced healthy heart would. It may thicken weight, said they felt better and did (hypertrophy) in an attempt to meet better on quality-of-life testing.” the increased workload of exercise, resulting in diminished blood-holding Q: Can exercise hurt me? capacity. Or it may dilate, causing the A: If you have a neuromuscular dis- heart to become floppy and relatively ease (and even if you don’t), some ineffective as a pump. types of exercise can hurt you. It’s When cardiomyopathy or other always a good idea to consult with types of heart disease render the your physician before starting an heart’s pumping action insufficient exercise program and, ideally, to in supplying the body’s cells with the work with a physical therapist who understands your disorder. There ... continued page 7 ©2009 MDA A 4 Quest 2009, No. 2 glossary of Exercise Terms active exercise: exercise that a person doesn’t extend completely and suddenly does using his or her own strength (see elliptical trainer: stationary exercise device passive exercise) that simulates walking or running with- aerobic exercise: exercise that involves or out causing the joints to be subjected to improves oxygen utilization by requir- much force ing the heart and lungs to work harder. exercise: muscle exertion (use) involving Aerobic exercises involve low to mod- expenditure of energy erately intense activities performed for fitness: the ability of the circulatory and extended periods of time. Examples respiratory systems to supply nutrients to are walking, running, swimming and skeletal muscles during
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