Amyotrophic Lateral Sclerosis: Care Instructions

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Overview

Amyotrophic lateral sclerosis (ALS) is a gradual wasting away of nerve cells (motor neurons) in the brain and spinal cord. These nerve cells control the muscles that allow movement. As ALS gets worse, it often becomes harder to walk, speak, eat, swallow, and breathe. But some people live for many years, even decades, after they learn that they have ALS.

Finding out that you have ALS may be overwhelming. You may feel many emotions and may need some help coping. Seek out family, friends, and counselors for support. Some treatments for ALS may slow the progress of the disease. There are also medicines to help with symptoms. These include medicines to prevent muscle cramps or stiffness, improve appetite, and relieve depression and pain.

ALS is also known as Lou Gehrig's disease or motor neuron disease.

Follow-up care is a key part of your treatment and safety. Be sure to make and go to all appointments, and call your doctor if you are having problems. It's also a good idea to know your test results and keep a list of the medicines you take.

How can you care for yourself at home?

  • Exercise and stretch your muscles as long as you can. Talk to a physical therapist about exercises you can do.
  • Eat small, frequent meals. Choose soft foods that are easy to swallow. Try to sit up when you eat. Eat slowly.
  • Learn about devices that can help you avoid injury and stay independent:
    • A neck (cervical) collar can support your head if the neck muscles get weak.
    • Foot and ankle braces, a cane, a walker, or a wheelchair can help you move around.
    • A ramp over stairs can allow you to get into and out of your house in a wheelchair.
    • Handrails or a shower seat can keep you from falling in the shower. A higher toilet seat can help you go to the bathroom by yourself.
    • If you have trouble talking, a voice amplifier or an erasable writing pad can help you communicate.
  • Consider joining a support group. Sharing your experiences with other people who have the same problem may help you learn more and cope better.
  • Be safe with medicines. Take your medicines exactly as prescribed. Call your doctor if you think you are having a problem with your medicine.
  • If you have not already done so, prepare a list of advance directives. These are instructions to your doctor and family members about what kind of care you want if you become unable to speak or express yourself.

When should you call for help?

Call your doctor now or seek immediate medical care if:

  • You have frequent coughing periods.
  • You feel like you are choking or have problems swallowing.
  • You have trouble breathing.
  • You have a fever.

Where can you learn more?

Go to https://www.healthwise.net/patientEd

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The Health Encyclopedia contains general health information. Not all treatments or services described are covered benefits for Kaiser Permanente members or offered as services by Kaiser Permanente. For a list of covered benefits, please refer to your Evidence of Coverage or Summary Plan Description. For recommended treatments, please consult with your health care provider.