There are common questions that we can answer about all health topics, such as "What is it?" and "How many people are affected." Answers to these questions are found under Condition Information. Each health topic frequently has specific questions that pertain only to that topic. We have answered those in this section.
How do people cope with muscular dystrophy?
Although improvements in drug therapies and assistive technologies are increasing the quality of life and longevity for patients, muscular dystrophy (MD) is a disease that presents challenges in many aspects of life. Living with MD requires a significant commitment of resources on the part of both families and those with the condition. Almost all people with any form of MD experience a worsening of symptoms over time. Typically, muscles weaken over the life course, and patients have greater difficulty performing tasks. Often, individuals with MD need more and more support as they grow older.
Aspects to consider in managing the daily lives of MD patients include1:
- Making the environment accessible. This includes adding ramps, widening doorways, moving bedrooms downstairs, and making other changes in the home that are necessary for wheelchair access.
- Mobility. Braces, wheelchairs, or electric scooters can help people with MD feel more independent.
- Diet. Reaching and maintaining a healthy weight is important, as too much or too little weight can cause respiratory problems and put extra burden on weakening muscles.
- Exercise. Low-impact activity like swimming can help improve muscle strength and emotional well-being.
- Sleep. Difficulty sleeping is common as muscles weaken. Certain beds and mattresses can help improve comfort.
In addition, support groups bring together people who are dealing with similar challenges and provide a safe place to share.2 Visit the Resources and Publications section to find organizations with support groups in your area.
- Parent Project Muscular Dystrophy. (2010). Managing daily life. Retrieved June 8, 2012, from http://www.endduchenne.org/care [top]
- Muscular Dystrophy Association. (2011). Learning to live with neuromuscular disease: A message for parents. Retrieved June 11, 2012, from http://www.mda.org/publications/PDFs/LearningtoLiveNMD.pdf (PDF - 705 KB) [top]