Amyotrophic Lateral Sclerosis: Care Instructions

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Your Care Instructions

Amyotrophic lateral sclerosis (ALS) damages the nerves in the brain and spinal cord. These nerves control the ability to move muscles. ALS slowly gets worse. Over time, 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 counsellors for support. Treatment for ALS helps you stay active as long as possible. Your doctor may prescribe medicine 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 or nurse call line 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 physiotherapist 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 washroom 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.
  • If you have not already done so, prepare a list of advance care plans. 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 or nurse call line 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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Current as of: October 14, 2016