Myotonic Dystrophy

WHAT YOU SHOULD KNOW:

• Myotonic dystrophy, or MD, is a genetic disease that affects the muscles. A genetic disease is one that you are born with and that you may have inherited from your family. With MD, muscles may get very stiff when you use them. These stiff muscles take a long time to relax and return to normal. This results in the muscles becoming weak, small, and to change shape. The heart, eyes, brain, hair, and other organs may also be affected by MD.
  
  
• Myotonic dystrophy is caused by problems with genes and chromosomes in the body. Genes are little pieces of information that tell your body what to do or what to make. Chromosomes are like packages that hold all the genes. With MD, you could develop cataracts, have heart problems, or have trouble swallowing and breathing. You may also have sleeping or thinking problems. There is no treatment for the weakness and wasting of the muscles, and there is no known cure for MD. You may have therapies, such as medicine and physical therapy to improve your quality of life.

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.
  
  
• 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.
  
  
• Physical therapy: A physical therapist helps you with special exercises. These exercises help make your bones and muscles stronger.

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.

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 swallowing problems.
  
  
• You have questions or concerns about myotonic dystrophy, medicines, or care.

SEEK CARE IMMEDIATELY IF:

• You are very depressed, or feel you cannot cope with your illness.
  
  
• You have a fever (increased body temperature).
  
  
• You are having breathing problems.

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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