Children with muscular dystrophy, a group of rare genetic diseases that cause muscles to weaken and deteriorate, should remain active as long as they can, experts say. "We feel very strongly that moderate exercise is very important to minimize the deconditioning that goes on with these diseases," says Darryl De Vivo, M.D., pediatric neurologist in the Pediatric Neuromuscular Disease Center at Columbia University Medical Center/New York-Presbyterian.
Water therapy and swimming are both beneficial for kids with muscular dystrophy, even when symptoms become more advanced. Warm water can relax muscles, and the buoyancy of water makes both activities low-impact, toning a child's muscles without placing added stress on them. In addition, water's nearly weightless effect gives kids a feeling of freedom to move in ways they can't on land.
Equine therapy, or horseback riding, is also beneficial as long as kids have the necessary muscle strength. Young patients can also participate in adaptive sports, such as soccer, tennis, bicycling, and basketball, which have modified equipment and playing rules to make them suitable for kids with disabilities or impairments.
"Children should be allowed to do as much as they can," says Valerie A. Cwik, M.D., executive vice president and chief medical and scientific officer of the Muscular Dystrophy Association in Tucson. "That's good for development, socialization, and overall skeletal growth. It's also important to keep joints limber and to keep muscles as healthy as possible. If a child doesn't engage the muscles, they may weaken just because of disuse."
Children with muscular dystrophy, however, should not lift heavy weights or exercise to the point of severe fatigue. Both practices could put them at increased risk of additional muscle damage, bone fracture, or other injury.
As their symptoms progress, kids with muscular dystrophy can still benefit from more stationary activities. For instance, standing at a table while playing on an iPad can help strengthen bones. Lying facedown while reading or watching TV can help stretch the hips.
Even children with very limited mobility can continue to challenge themselves. Breathing activities such as blowing bubbles can help delay lung weakness. Playing a wind instrument or joining a choir can help delay breathing troubles. Children can also maintain a sense of freedom with new equipment. "When a child is no longer able to walk, we advocate getting into a motorized wheelchair so the child can still explore their environment on her own independently," Dr. De Vivo says.
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