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.
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.You may need any of the following:
- 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.
- 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 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.
- 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.
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.
For support and more information:
Myotonic dystrophy is a life-changing disease for you and your family. Accepting that you or a family member has MD may be 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. This is a group of people who have myotonic dystrophy or a similar disease. 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 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.
- You are having breathing problems.
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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.