3 Ways to Live With Muscular Dystrophy

1. Engage in Physical Therapy

Getting a referral to a physical therapist as soon as muscular dystrophy (MD) is diagnosed is one of the most important ways to help yourself, or someone you love, learn to live with the disease. Many people with MD are diagnosed while they can still walk and move around reasonably well. Physical therapy addresses the way your body is changing and methods to manage the changes while still preserving your independence. The exercises you will learn, whether they are active or passive stretching, help maintain your mobility and flexibility as long as possible. Ask your physical therapist about assistive devices, such as splints, braces or wheelchairs, that can help you manage your mobility.

2. Address Emotional Issues

Finding a support group for yourself and the other members of your family can help you sort out the anger, depression and fear you may feel about having MD or caring for a child with the disease. You can meet other families like yours that have been affected by the disease and share stories about how you cope with various aspects of treatment and daily life. Your doctor and the local chapter of the Muscular Dystrophy Association (MDA) will be able to give you information about specific meeting times and places for the support groups. Individual counseling may also be a helpful coping mechanism for people who are affected by muscular dystrophy. Your counselor can help you come to terms with your condition and how you feel about losing your autonomy.

3. Get Some Pain Relief

Some people with MD, especially facioscapulohumeral MD (FSHD), experience muscle pain and inflammation. Talk to your doctor about pain medications that you can use safely to reduce your discomfort and live more comfortably. Most people can take non-steroid anti-inflammatory drugs (NSAIDs) in the form of ibuprofen or naproxen without a problem. If you have ulcers or other stomach issues, you may need to have your doctor prescribe another medication that will be gentler on your stomach.

Warm compresses can also dull muscle pain. A warm washcloth, hot-water bottle or heating pad can be an effective treatment for muscle aches.