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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.

CARE AGREEMENT:

You have the right to help plan your care. Learn about your health condition and how it may be treated. Discuss treatment options with your caregivers to decide what care you want to receive. You always have the right to refuse treatment.

RISKS:

Untreated MD may make the symptoms of other diseases worse, which can be serious and life threatening. If you decide to have children, MD may be passed to them. Genetic counseling is important so that you and your family may learn about your disease. Ask your caregiver for more information about MD.

WHILE YOU ARE HERE:

Informed consent

is a legal document that explains the tests, treatments, or procedures that you may need. Informed consent means you understand what will be done and can make decisions about what you want. You give your permission when you sign the consent form. You can have someone sign this form for you if you are not able to sign it. You have the right to understand your medical care in words you know. Before you sign the consent form, understand the risks and benefits of what will be done. Make sure all your questions are answered.

Blood tests:

You may need blood taken to give caregivers information about how your body is working. The blood may be taken from your hand, arm, or IV.

Deep breathing:

This exercise should be done once an hour to keep you from getting a lung infection. Deep breathing opens the tubes going to your lungs. Slowly take a deep breath and hold the breath as long as you can. Then let out your breath. Take 10 deep breaths in a row every hour while awake. You may be asked to use an incentive spirometer to help you with this. Put the plastic piece into your mouth and slowly take a breath as deep and as long as you can. Hold your breath as long as you can. Then, let out your breath.

Eating and swallowing:

Your doctor may ask a swallowing therapist to work with you if you have trouble swallowing. This person has special training to help people learn safer ways to swallow. The swallowing therapist will also help you learn which foods and liquids are safe to eat and drink.

  • You may be fed by an IV or a nasogastric (NG) tube if your swallowing problems are very bad. An NG tube is put in through your nose and goes down into your stomach. The tube may also go directly from the outside of your body into your stomach. This is called a gastrostomy tube.

  • You may be given thickened liquids to drink because they may be easier for you to swallow. A special powder is used to thicken liquids. You may also be able to eat softer (mashed) foods. You may be able to eat what you usually eat when your swallowing gets better.

Heart monitor:

This is also called an ECG or EKG. Sticky pads placed on your skin record your heart's electrical activity.

Medicine:

You may have one or more of the following:

  • Muscle relaxers: This medicine helps relax your muscles. It is also given to decrease pain and muscle spasms.

  • Pain medicine: Caregivers may give you medicine to take away or decrease your pain.

    • Do not wait until the pain is severe to ask for your medicine. Tell caregivers if your pain does not decrease. The medicine may not work as well at controlling your pain if you wait too long to take it.

    • Pain medicine can make you dizzy or sleepy. Prevent falls by calling a caregiver when you want to get out of bed or if you need help.

  • Steroids: This medicine may be given to decrease inflammation.

Tests:

You may have one or more of the following:

  • Barium swallow: This test is an x-ray of your throat and esophagus, the tube connecting your throat to your stomach. This test may also be called a barium esophagram. You will drink a thick liquid called barium. Barium helps your esophagus and stomach show up better on x-rays. Follow the instructions of your caregiver before and after the test.

  • Biopsy: Caregivers remove a small piece of tissue from your muscle to be sent to the lab for tests.

  • Telemetry is continuous monitoring of your heart rhythm. Sticky pads placed on your skin connect to an EKG machine that records your heart rhythm.

  • Electromyography: This is also called an EMG. An EMG is done to test the function of your muscles and the nerves that control them. Electrodes (wires) are placed on the area of muscle being tested. Needles that enter your skin may be attached to the electrodes. The electrical activity of your muscles and nerves is measured by a machine attached to the electrodes. Your muscles are tested at rest and with activity.

  • Genetic test: This test provides genetic information to learn if a hereditary disease is causing your problem.

  • Magnetic resonance imaging: This test is also called an MRI. Pictures of your muscles are taken during this test. Caregivers use these pictures to look for changes in your muscles.

Treatment options:

You may need one or more of the following:

  • Assistive devices: These are devices that protect and support your body to prevent further injury. These are devices may include braces, crutches, or wheelchairs.

  • Rehabilitation therapy: Physical and occupational therapies may be needed to help you become better able to take care of yourself. Physical therapies are exercises to help make your bones and muscles stronger. Occupational therapy uses work, self-care, and play activities to help you in your daily life.

  • Surgery: This may be needed to treat problems from MD, such as contractures (tightening of muscles affecting movement of joints).

© 2014 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.

Learn more about Muscular Dystrophy (Inpatient Care)

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