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Muscular Dystrophy

WHAT YOU SHOULD KNOW:

Muscular Dystrophy (Discharge Care) Care Guide

  • 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.

AFTER YOU LEAVE:

Take your medicine as directed.

Call your primary healthcare provider if you think your medicine is not helping or if you have side effects. Tell him if you are allergic to any medicine. Keep a list of the medicines, vitamins, and herbs you take. Include the amounts, and when and why you take them. Bring the list or the pill bottles to follow-up visits. Carry your medicine list with you in case of an emergency.

Ask for information about where and when to go for follow-up visits:

For continuing care, treatments, or home services, ask for more information.

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 (rehab) is a program run by specialists who will help you safely strengthen your heart and prevent more heart disease. The plan includes exercise, relaxation, stress management, and heart-healthy nutrition. Caregivers will also check to make sure any medicines you are taking are working. The plan may also include instructions for when you can drive, return to work, and do other normal daily activities.

Physical therapy:

You may need to see a physical therapist to teach you special exercises. These exercises help improve movement and decrease pain. Physical therapy can also help improve strength and decrease your risk for loss of function.

Occupational therapy:

Occupational therapy (OT) uses work, self-care, and other normal daily activities to help you function better in your daily life. OT helps you develop skills to improve your ability to bathe, dress, cook, eat, and drive. You may learn to use special tools to help you with your daily activities. You may also learn new ways to keep your home or workplace safe.

Pain clinic:

Caregivers at a pain clinic may help you learn new ways to control your pain. You may learn relaxation or special breathing exercises to help decrease your pain. Caregivers at the clinic will help you find ways to decrease your pain that may work for you.

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.

For support and more information:

Muscular dystrophy is a life-changing disease for you, your child, and your family. Having MD is hard. You and those close to you may feel angry, sad, or frightened. These are normal feelings. Talk to your caregivers, family, or friends about your feelings. You may also want to join a MD support group. Contact the following for more information:

  • Muscular Dystropy Association
    3300 E. Sunrise Drive
    Tucson , AZ 85718
    Phone: 1- 800 - 344-4863
    Web Address: http://www.mdausa.org
  • National Society of Genetic Counselors
    401 N. Michigan Ave.
    Chicago , IL 60611
    Phone: 1- 312 - 321-6834
    Web Address: www.nsgc.org

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.

  • You are so depressed or feel you cannot cope with your illness.

  • You have trouble breathing.

  • You have any of the following signs of a heart attack:

    • Squeezing, pressure, or pain in your chest that lasts longer than 5 minutes or returns

    • Discomfort or pain in your back, neck, jaw, stomach, or arm

    • Trouble breathing

    • Nausea or vomiting

    • Lightheadedness or a sudden cold sweat, especially with chest pain or trouble breathing

© 2013 Truven Health Analytics Inc. Information is for End User's use only and may not be sold, redistributed or otherwise used for commercial purposes. All illustrations and images included in CareNotes® are the copyrighted property of A.D.A.M., Inc. or Truven Health Analytics.

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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