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Amyotrophic Lateral Sclerosis
WHAT YOU SHOULD KNOW:
- Amyotrophic lateral sclerosis is also called "ALS" or Lou Gehrig disease. ALS is a disease that affects the motor neurons (nerve cells that control the muscles). The exact cause of ALS is unknown. The first symptom of ALS is usually muscle weakness, especially of the hands, arms, feet, legs, and upper body. Other muscles may also be affected, including those that control important functions, such as speech, swallowing, and breathing.
- ALS may be diagnosed by a physical exam and having muscle and nerve electric tests. Other tests may also be done, such as a computerized tomography (CT) scan and magnetic resonance imaging (MRI) test. There is no cure for ALS, but treatments may decrease your symptoms. A central nervous system medicine called riluzole is currently the only medicine given to treat ALS. Other medicines may be used to decrease some symptoms of ALS.
Take your medicine as directed:
Call your primary healthcare provider if you think your medicine is not working as expected. Tell him if you are allergic to any medicine. Keep a current list of the medicines, vitamins, and herbs you take. Include the amounts, and when, how, and why you take them. Take the list or the pill bottles to follow-up visits. Carry your medicine list with you in case of an emergency. Throw away old medicine lists.
- If pills are difficult to swallow, grind them into powder. You may mix the powder with applesauce or use other foods that are easy to swallow. Some medicines are available in liquid form. Ask your caregiver about ways of taking your medicines.
Ask for information about where and when to go for follow-up visits:
For continuing care, treatments, or home services, ask for more information.
Chewing and swallowing problems may cause you to have to change what you eat and drink. A caregiver called a dietitian or nutritionist will work with you to find the right diet, and to answer your questions about diet.
- Avoid foods that may cause eating and swallowing problems:
- Food or liquid that is too runny: Some liquid can run into the airway to the lungs and cause irritation or blockage.
- Food that is too dry, fibrous, or bony: Dry toast, pineapple, bony fish, or meat tends to irritate the throat.
- Food that is too sticky: Thick and sticky foods, such as a thick sauce or peanut butter, may be hard to swallow. Thinning the sauce may help.
- Food with skin or seeds: Avoid food with skin or seeds, such as corn, berries, and nuts.
- Eat softer and smaller pieces of food, such as custards, puddings, yogurt, gelatins, and soft fruits. These foods can slide down your throat with less chewing.
- Keep a list of items suggested for your diet where you can see it. You may also use special cookbooks to find new recipes.
Rehabilitation programs for ALS:
Rehabilitation programs help you to keep doing your usual activities. Therapies teach you special skills so you can have a better life.
- Physical therapy are exercises to help your bones and muscles get stronger. A physical therapist teaches you special exercises to stay active as long as possible. These exercises help your muscles stay as flexible and soft as possible. The therapist may suggest you use a cane or walker if you are at risk of falling. Leg and ankle splints may support your weak muscles. You may need a scooter or a manual or power wheelchair to get around.
- ALS may cause your voice to change or to have problems talking or swallowing. A speech therapist may work with you to improve how you talk. A swallowing therapist can help if you have trouble swallowing. This person has special training to help you learn safer ways to swallow. He will also teach you which foods and liquids are safe to eat and drink.
- Occupational therapy may help you care for yourself as long as possible. This therapy teaches you special skills for bathing, dressing, eating, or driving. An occupational therapist may help you choose special equipment to help you at home or work. The therapist may suggest ways to keep your home or work place safe. These ideas may keep you from being injured, such as injury from a fall.
Do not smoke cigarettes or tobacco. Smoking harms the heart, kidneys, lungs, and the blood. You may have more trouble breathing if you do not stop smoking. Ask your caregiver for help to stop smoking.
CONTACT A CAREGIVER IF:
- You are so depressed you feel you cannot cope with your illness.
- You cannot make it to your therapy sessions or follow up visits.
- You have questions or concerns about ALS, medicine, or care.
SEEK CARE IMMEDIATELY IF:
- You have a fever.
- You have chills, cough, or feel weak and achy.
- You have severe chest pain.
- You have trouble breathing all of a sudden.
- This is an emergency. Call 911 or 0 (operator) to get to the nearest hospital or clinic.
- Do not drive yourself to the hospital.
- Your symptoms are getting worse.
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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.