Simple devices like a cane or a long-handled reacher can make things easier as weakness progresses.
A power wheelchair or scooter becomes convenient when weakness in the pelvic girdle and upper legs causes frequent falls. People whose LGMD has reached this stage often find that a great deal of their independence returns, and they’re much less fatigued when they begin using this type of mobility equipment.
The heart can be affected in LGMD, but this doesn’t occur as often as it does in some other forms of muscular dystrophy. Heart problems can take two forms — weakness of the heart muscle (cardiomyopathy) and abnormal transmission of signals that regulate the heartbeat (conduction abnormalities or arrhythmias). The heart should be monitored for these complications. When necessary, medications or devices (such as pacemakers) can be used to treat them.
Respiratory (breathing) function can decline over time, and this, too, should be monitored regularly. There are devices that can help sustain respiratory function. For more on this topic, see Simple and Safe: Noninvasive volume ventilation systems go beyond 'BiPAP', written by a man with LGMD.
No special dietary restrictions or additions are known to directly affect the course of LGMD. A doctor may advise a weight reduction or weight stabilization diet for some people, because being markedly overweight puts greater stress on already weakened muscles.
Physical and occupational therapy programs are usually part of the treatment for LGMD. Occupational therapy focuses on specific activities and functions, particularly use of the hands, while physical therapy emphasizes mobility and (where possible) strengthening of large muscle groups. Your MDA clinic physician may refer you to the therapy department at your medical center for a thorough evaluation and an individualized exercise program.
The primary goals of physical therapy are to allow greater motion in the joints and to prevent contractures (freezing of the joints). These problems can arise when movement is limited, and it’s important for the patient’s comfort and function to avoid them.
In occupational therapy, the focus is on improving abilities related to your job, recreation or daily living. For example, arm supports can make tasks such as using a computer or fixing your hair less tiring.
Doctors and therapists have somewhat different opinions on the relative value or danger of various exercise regimens in people with muscular dystrophy. In LGMD, certain kinds of stress-causing exercises may actually hasten muscle damage.
Some experts recommend swimming and water exercises as a good way to keep muscles as toned as possible without causing undue stress on them. The buoyancy of the water helps protect against certain kinds of muscle strain and injury. Before undertaking an exercise program, make sure you’ve had a cardiac evaluation, and don’t swim alone. For more on exercise, see Exercising with a Muscle Disease.
To learn more, read In Focus: Limb-Girdle Muscular Dystrophy (October 2013 special report) and AAN Releases Guideline for LGMD Diagnosis and Care (October 2014).