Your child's physical needs will change over time. Being aware of what may be coming up in the next year or so will help you identify signs that your child's condition is changing. It will also help you -- and him -- prepare for the adjustments required by DMD. This chapter examines some of the major areas in which you and your medical team need to monitor your son's DMD progression.

THE EXERCISE QUESTION

"Should my child exercise and, if so, what should he do, and how much should he do?" is certainly among the most frequently asked questions when parents first learn their child has muscular dystrophy.

Unfortunately, the benefit-to-risk ratio of exercise in DMD is also among the murkiest areas, even for experts in this disorder.

Much of the murkiness exists because, even though it's well known that the lack of dystrophin is

Swimming is a good exercise for boys with DMD.

responsible for the muscle degeneration, precisely how it affects the muscle still isn't clear.

Dystrophin links the inside of the muscle fiber to the tissue outside it, via a cluster of proteins that spans the cell membrane. If the complete or partial lack of dystrophin makes the fiber more likely to tear as it contracts (which seems likely), then exercise, which is muscle contraction, is likely to cause more tears than sitting still. However, there is as yet no clear consensus on whether or not Duchenne muscles are more likely to tear with contraction than normal muscles.

On the other hand, even if exercise does damage the muscles, so does lack of exercise, just as it does in anyone. Exercise builds skeletal muscle, as well as keeps the cardiovascular system tuned up and contributing to overall physical and psychological well-being. (Special types of exercises to keep joints flexible should be prescribed by a physical therapist. see "Staying Flexible, Upright and Mobile.")

With a small child who's still active, it may be all but impossible to keep him from exercising as much as he's able to, and few doctors would recommend trying.

With an older child, the problem may be the opposite. His weakened muscles may make him tire easily, and he may be discouraged to see his peers performing athletic feats or participating in activities that he may think he can't enjoy. It may be hard to get him out of the chair and away from the television or computer.

Ask your doctor for an opinion, of course. But if he's uncertain, you can't go too far wrong by helping your child exercise moderately and not to the point of exhaustion.

Dr. Alan Emery, a renowned British specialist in muscular dystrophy, highly recommends swimming for children with these disorders, since the buoyancy of the water makes it easier and more pleasant for them to move their arms and legs.

Be sure the boy doesn't swim alone, and make sure any cardiac problems have been properly evaluated.

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