Amyotrophic Lateral Sclerosis
WHAT YOU SHOULD KNOW:
Amyotrophic Lateral Sclerosis (Discharge Care) Care Guide
- Amyotrophic Lateral Sclerosis
- Amyotrophic Lateral Sclerosis Aftercare Instructions
- Amyotrophic Lateral Sclerosis Discharge Care
- Amyotrophic Lateral Sclerosis Inpatient Care
- En Espanol
Amyotrophic lateral sclerosis (ALS) is also called Lou Gehrig disease. It affects the nervous system. The nervous system includes your brain, spinal cord, and nerves. In ALS, the motor nerves that direct your muscles to move are damaged. These muscles gradually weaken, waste away, and can begin to twitch. Over time, ALS may lead to total paralysis (not able to move your muscles), including the muscles for breathing.
AFTER YOU LEAVE:
- Central nervous system medicine: This medicine reduces the damage to the motor neurons by decreasing the release of glutamate.
- Other medicines: These medicines may help ease muscle cramps, fatigue, and excessive saliva or mucus caused by ALS.
- If pills are difficult to swallow, grind them into powder. You may mix the powder with applesauce or other foods that are easy to swallow. Some medicines are available in liquid form. Ask your primary healthcare provider the best way to take your medicines.
- 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.
Follow up with your primary healthcare provider or neurologist as directed:
Write down your questions so you remember to ask them during your visits.
You may need to change what you eat and drink if you have problems chewing and swallowing. A dietitian or nutritionist will help you find the right diet and answer your questions. 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. Avoid foods that may cause eating and swallowing problems:
- Food or liquid that is runny: Some liquid can run into the airway to the lungs and cause irritation or blockage.
- Food that is dry, fibrous, or bony: Dry toast, pineapple, bony fish, or meat tends to irritate the throat.
- Food that is 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.
Rehabilitation programs for ALS:
Rehabilitation programs can teach you skills to improve your quality of life:
- Physical therapy: A physical therapist can teach you 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 wheelchair to get around.
- Speech therapy: ALS may cause your voice to change or cause you to have problems talking or swallowing. A speech therapist may work with you to improve how you talk. They can help if you have trouble swallowing. He will also teach you which foods and liquids are safe to eat and drink.
- Occupational therapy: Occupational therapy can help you care for yourself as long as possible. This therapy teaches you skills to help you bathe, dress, eat, and drive. An occupational therapist may suggest equipment to help you at home or work. The therapist may suggest ways to keep your home or work place safe.
Do not smoke cigarettes or tobacco. Smoking harms the heart, kidneys, lungs, and the blood. You may have more trouble breathing if you smoke. Ask your caregiver for help to stop smoking.
For more information:
- National Institute of Neurological Disorders and Stroke
P.O. Box 5801
Bethesda , MD 20824
Phone: 1- 301 - 496-5751
Phone: 1- 800 - 352-9424
Web Address: http://www.ninds.nih.gov
Contact your primary healthcare provider or neurologist if:
- You have a fever.
- You have chills, cough, or feel weak and achy.
- You are depressed and feel you cannot cope with your illness.
- You have questions or concerns about your condition or care.
Seek care immediately or call 911 if:
- You have severe chest pain.
- You have trouble breathing all of a sudden.
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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.