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Amyotrophic Lateral Sclerosis Discharge Instructions

About this topic

Amyotrophic lateral sclerosis is also called ALS. It is an illness that affects your brain and spinal cord. These control your ability to move, speak, eat, and breathe. Messages travel along nerve cells. They go from your brain to your muscles and tell them to move. The nerve cells slowly waste away and die when you have ALS. Your brain cannot send the signals to the muscles. Then, your muscles start to weaken, and eventually stop moving.

Signs start in your hands, feet, arms, or legs. Then, they spread to other parts of your body. Treatment may help ease signs of ALS, but there is no cure at this time. Your doctor may give you drugs, exercises, and speech therapy. This may help you be able to keep moving for as long as possible. You may need to have a feeding tube to give you good nutrition when you start to have problems swallowing. You may also need to have a breathing machine eventually. This is because the muscles that help you breathe also become weak and you are not able to breathe on your own.

What care is needed at home?

  • Ask your doctor what you need to do when you go home. Make sure you ask questions if you do not understand what the doctor says. This way you will know what you need to do.
  • Take all your drugs as directed by your doctor. They may help to slow your signs.
  • Talk to your family of your wishes for care. There is no cure for ALS. You will slowly start to lose your ability to function and care for yourself.
  • Take care of yourself by eating a healthy diet, getting exercise, and staying active.
  • Do activities that you enjoy.
  • Talk with your doctor and your employer of changes that may be needed in the future.
    • Ask what can be done to help with drooling.
    • Make plans for a wheelchair for when walking is hard.
    • Think of other ways to communicate when talking becomes hard.
    • Talk about feeding tubes and their care.
    • Learn about different kinds of help for breathing.
  • Wear a medical alert ID always.
  • Keep your home safe and easy for you to get around.
  • Try to lower stress and worry. They can make your muscles tense and make you hurt more.
  • Get lots of sleep and rest. Lack of sleep can cause back pain. Sleep on a cozy mattress that supports your back.

What follow-up care is needed?

  • Your condition needs close watching. Your doctor may ask you to make visits to the office to check on your progress. Be sure to keep these visits.
  • You may need to see your speech and language therapists for continuing care of your speech and swallowing problems. They can teach you exercises to help with your speech. They can also help you learn to communicate and swallow more safely.
  • You will continue doing exercises with your physical therapist (PT). Range of motion and stretching exercises can help build up muscles, keep them from getting tight, and improve motion.
  • You should also see a dietitian and ask about proper nutrition to meet your dietary needs.

What drugs may be needed?

The doctor may order drugs to:

  • Slow the course of the disease
  • Lower muscle spasms
  • Help with pain
  • Help dry your mouth
  • Help with low mood

Will physical activity be limited?

  • Ask your doctor about going to work, driving, and other activities.
  • Eventually you will become weaker. You will not be able to do the activities that you are used to doing. You will need to find new ways to do your activities.

What changes to diet are needed?

  • Your speech therapist and dietitian will help you decide what foods and drinks are safest for you.
  • You may need to puree foods and have thicker liquids when swallowing becomes hard. Your speech therapist will tell you how to do this. The therapist will also help you learn what texture is safe for you to eat.
  • You may need to have tube feedings to get the right amount of nutrients.

What problems could happen?

  • Poor nutrition
  • Weight loss
  • Not able to breathe without help
  • Lung infection (pneumonia)
  • Pressure sores
  • Fluid loss
  • Falls
  • Paralysis
  • Not able to talk or swallow
  • Death

When do I need to call the doctor?

  • Signs of infection. These include a fever of 100.4°F (38°C) or higher, chills, very bad sore throat, cough, more sputum or change in color of sputum, mouth sores, wound that will not heal.
  • Body weakness
  • Problems breathing
  • Shortness of breath
  • You are losing too much weight
  • Swallowing problem gets worse

Teach Back: Helping You Understand

The Teach Back Method helps you understand the information we are giving you. The idea is simple. After talking with the staff, tell them in your own words what you were just told. This helps to make sure the staff has covered each thing clearly. It also helps to explain things that may have been a bit confusing. Before going home, make sure you are able to do these:

  • I can tell you about my condition.
  • I can tell you what changes I need to make with my diet, drugs, or activities.
  • I can tell you what I will do if I have weakness or trouble breathing or swallowing.

Where can I learn more?

National Institute of Neurological Disease and Stroke

NHS Choices

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