The muscular dystrophies (MD) are a group of more than 30 genetic diseases characterized by progressive weakness and degeneration of the skeletal muscles that control movement. Some of the more common forms of MD include:
Some forms of MD are seen in infancy or childhood, while others may not appear until middle age or later. Each type of MD varies somewhat in the muscles that are affected, the rate at which the disease progresses and the severity of the muscle weakness. MD weakens muscles over time, so children, teens and adults who have the disease can gradually lose the ability to do the things most people take for granted, like walking or sitting up. Someone with MD might start having muscle problems as a baby, or the symptoms might start later.
When treating a child with MD, the occupational and physical therapists work with the family to help identify activities that are problematic for the child, as well as activities that the child is able to complete without issues. Areas of focus can include preventative bracing such as night splints or day bracing to help maintain range of motion in muscles which commonly become tight due to weakness or immobility.
The therapists will also develop a range-of-motion maintenance program. They’ll teach the families different techniques, such as myofascial release or positioning, which will help keep the child’s muscles flexible and loose. This will provide the best opportunity to keep their body in good alignment and able to do as much as their muscle strength will allow them.
Once a maintenance program is established, the family will receive handouts of the appropriate activities that include pictures of the child, or family member, performing the activities accompanied by written instructions to guide them at home.