Live With Muscular Dystrophy

Muscular Dystrophy (MD) affects the movement and control of muscles and, in some cases, the internal organs. As the disease progresses, the muscles gradually weaken and atrophy. Learning to live with MD is easier when a support system is in place.

Instructions

1. Talk with your family about the disease. This is especially important when a child is stricken with MD, since other siblings may be confused and feel guilt. Encourage the entire family to discuss their feelings and become involved in the caring process.

2. Treat a victim of MD with respect and encouragement. Create goals and work systematically to make them happen. Concentrate on education and career paths that adapt to the special needs an MD sufferer has.

3. Reach out to others who share an affliction with MD. Thanks to the massive fund raising efforts of celebrities, MD sufferers have an extensive network of support from local and national organizations. The Muscular Dystrophy Association (MDA) offers free literature to victims and their families. (See Resources)

4. Assist an MD patient with dressing himself by replacing buttons and shoelaces with Velcro closures, attaching large rings to zipper pulls and providing tube socks. Split shoes in the back or on the sides and secure with Velcro tabs.

5. Make beds with satin sheets to reduce friction and prevent bedsores. Add soft egg crate padding under the sheet for comfort and use lightweight comforters instead of heavy blankets for easier movement in bed.

6. Provide baby wipes in the bathroom to assist with personal cleaning. Use security pads to prevent nighttime urination accidents or when traveling. Consider removing the bathroom door if access is difficult with a wheelchair.

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7. Remodel certain aspects of your home to accommodate an MD victim. Eating bars, installed to wheelchair height make mealtime easier. Low-pile carpeting helps wheelchairs roll smoothly and replacing doorknobs and faucet knobs with handles helps an MD patient care for himself.

8. Add cylindrical foam insulation tubes to eating utensils to make grasping them easier. Use mugs with large wide handles and provide plastic plates and bowls. Put slightly damp dishtowels under plates and bowls to prevent slippage.

9. Encourage ongoing physical therapy and exercise as recommended by your doctor to reduce muscle contraction and slow the wasting process.