Muscular Dystrophy

WHAT YOU SHOULD KNOW:

• Muscular dystrophy is also called MD. It is a genetic disease that can affect different groups of muscles in your body. A genetic disease is one that you may inherit from your family and may pass on to your children. Muscular dystrophy may also be a condition that you are born with. MD causes the muscle cells to die. This results in the muscle becoming weak, small, and deformed. MD may also affect other parts of your body, such as your heart, lungs, eyes, and brain. MD is caused by problems in the genes and chromosomes.
  
  
• There are many types of MD. Each type may have different muscle groups that may be affected. Genetic tests are needed to know the type of MD. Blood tests, muscle biopsy, electromyography (EMG), and magnetic resonance imaging (MRI) may also be needed. Steroid medicines are often given to decrease pain and swelling. You may also need surgery, rehabilitation therapy, and assistive devices such as body braces or crutches. Genetic counseling is important to help you cope with your disease. As your caregiver about these tests and treatments.

INSTRUCTIONS:

Medicines:

• Keep a written list of the medicines you take, the amounts, and when and why you take them. Bring the list of your medicines or the pill bottles when you see your caregivers. Learn why you take each medicine. Ask your caregiver for information about your medicine. Do not use any medicines, over-the-counter drugs, vitamins, herbs, or food supplements without first talking to caregivers.
  
  
• Always take your medicine as directed by caregivers. Call your caregiver if you think your medicines are not helping or if you feel you are having side effects. Do not quit taking your medicines until you discuss it with your caregiver. If you are taking medicine that makes you drowsy, do not drive or use heavy equipment.

Ask your caregiver when to return for a follow-up visit. Keep all appointments. Write down any questions you may have. This way you will remember to ask these questions during your next visit.

Genetic counseling: You and your family will learn about genetic diseases. This information may help you and your family make important decisions, such as planning a family.

Breathing exercises: You may feel short of breath when you are active. The following are breathing exercises that may help you breathe more easily:

• Breathe out with pursed or puckered lips (like playing the trumpet).
  
  
• Breathe using your diaphragm. Put one hand on your abdomen and breathe in, causing your hand to move outward or upward. Your lungs will have more room to get bigger and to take in more air.

Cardiac rehabilitation: Cardiac rehabilitation, or cardiac rehab, is a program that helps you feel better after having a heart problem. Cardiac rehab may also decrease your risk of having heart problems in the future. During cardiac rehab, you learn how to live a more heart-healthy lifestyle. You may also learn how to exercise safely to strengthen your muscles and heart.

Physical therapy: Your caregiver may want you to go to physical therapy. A physical therapist will help you with special exercises. These exercises help make your bones and muscles stronger.

Occupational therapy: Occupational therapy (OT) uses work, self-care, and play activities to help you in your daily life. OT teaches special skills for bathing, dressing, cooking, eating, or driving. An occupational therapist may help you choose tools to use, and suggest ways to keep your home or workplace safe. You and your therapist will plan a therapy program that is right for you.

Pain clinic: Caregivers at a pain clinic may help you learn new ways to control your pain. There are many ways to decrease pain, like relaxation therapy or special breathing exercises. Caregivers at the clinic can help you find ways that work for you. Ask your caregiver if these may be used instead of, or in addition to your pain medicines.

You may feel safer if you use a 4 prong (pointed) cane or a walker when walking. To keep from falling, remove loose carpeting from the floor. Using chairs with side arms and hard cushions will make it easier to get up or out of a chair. Put grab bars on the walls beside toilets and inside showers and bathtubs. These will help you get up after using the toilet or after bathing. Grab bars will also help to keep you from falling in the shower. You may want to put a shower chair inside the shower.

CONTACT A CAREGIVER IF:

• You have problems with your bowel movements.
  
  
• You have more weakness than usual.
  
  
• You have trouble swallowing.
  
  
• You have questions or concerns about muscular dystrophy, medicines, or care.

SEEK CARE IMMEDIATELY IF:

• You have a fever (increased body temperature).
  
  
• You are so depressed or feel you cannot cope with your illness.
  
  
• You have trouble breathing.
  
  
• You have signs of a heart attack:
  
  
  • Chest pain or discomfort that spreads to your arms, jaw, or back.
    
    
  • Unusual, sudden back pain.
    
    
  • Nausea (sick to your stomach).
    
    
  • Trouble breathing.
    
    
  • Sweating.
    
    
  • Lips or nailbeds that turn blue or white in color.
    
    
  • This is an emergency. Call 911 or 0 (operator) for an ambulance to get to the nearest hospital or clinic. Do not drive yourself!

Copyright © 2008 Thomson Healthcare Inc. All rights reserved. Information is for End User's use only and may not be sold, redistributed or otherwise used for commercial purposes.

The above information is an educational aid only. It is not intended as medical advice for individual conditions or treatments. Talk to your doctor, nurse or pharmacist before following any medical regimen to see if it is safe and effective for you.

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