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Amyotrophic Lateral Sclerosis
WHAT YOU NEED TO KNOW:
Amyotrophic lateral sclerosis (ALS) is also called Lou Gehrig disease. ALS is a condition that damages the cells of your motor nerves. The motor nerves direct your muscles to move. These muscles gradually weaken and waste away. Over time, ALS may lead to total paralysis, including the muscles for breathing. It is a progressive disease that becomes fatal over time.
Call 911 for any of the following:
- You have severe chest pain.
- You suddenly have trouble breathing.
Contact your healthcare provider if:
- You have a fever.
- You have chills, a 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.
- Medicines may be given to reduce the damage to the motor neurons by decreasing the release of glutamate. You may also be given medicines to ease muscle cramps, fatigue, and excessive saliva or mucus.
- 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 healthcare provider the best way to take your medicines.
- Take your medicine as directed. Contact your healthcare provider if you think your medicine is not helping or if you have side effects. Tell him or her 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 healthcare provider as directed:
Write down your questions so you remember to ask them during your visits.
Rehabilitation programs for ALS:
Rehabilitation programs can teach you skills to ease symptoms and improve your quality of life:
- A physical therapist can teach you exercises to stay active and independent as long as possible. In the early stages of ALS, low-impact exercises will help strengthen your muscles that are not affected. Leg and ankle splints may support your weak muscles. Range of motion exercises will help the jerkiness in your muscles and prevent shortening of muscles.
- A speech therapist may work with you to improve how you communicate and eat. ALS may cause your voice to change or cause you to have problems talking or swallowing. The speech therapist will also teach you which foods and liquids are safe to eat and drink. He or she can also help you with devices to help you communicate with others.
- An occupational therapist can help you care for yourself as long as possible. He or she can teach you skills to help you bathe, dress, and eat. An occupational therapist suggests equipment to help you at home or work. Examples of equipment include a walker, wheelchair, or ramp. The therapist will suggest ways to keep your home or work place safe.
You may need to change what you eat and drink if you have problems chewing and swallowing. A dietitian or nutritionist will help you plan meals and answer your questions. Eat softer and smaller pieces of food, such as custards, puddings, yogurt, gelatins, and soft fruits. You will not need to chew these foods. Avoid foods that may cause eating and swallowing problems:
- Food or liquid that is thin or runny can run into your lungs and cause irritation or blockage.
- Food that is dry, fibrous, or bony, such as dry toast, pineapple, or bony fish, may irritate your throat.
- Food that is sticky, such as a thick sauce or peanut butter, may be hard to swallow. Thinning the sauce may help.
- Avoid food with skin or seeds, such as corn, berries, and nuts. These foods may be difficult to chew and digest.
Do not smoke:
Smoking harms the heart, kidneys, lungs, and the blood. You may have more trouble breathing if you smoke. Ask your healthcare provider for information if you currently smoke and need help to quit. E-cigarettes or smokeless tobacco still contain nicotine. Talk to your healthcare provider before you use these products.
Make your needs known:
Make your wishes about your care and quality of life known. You may need to speak to a social worker to know all of your options. Speak to family members about your wishes. Write them down. You can change your mind any time during the process.
For more information:
- ALS Association
1275 K Street NW, Suite 250
Washington , DC 20005
Phone: 1- 202 - 407-8580
Web Address: alsa.org
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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.