If you have amyotrophic lateral sclerosis (ALS), it is important for you and your family to learn to cope with the effects of the disease. Much of your care will take place at home, and good home treatment can sometimes help manage symptoms and prevent complications.

Early in the course of the disease, light aerobic exercise and slow, easy stretching may help you stay strong, reduce fatigue and depression, and prevent muscle cramps and spasms. A physical therapist can help plan safe physical activities and evaluate your changing needs throughout the course of the disease.

People who have ALS often have problems chewing and swallowing. Making changes in your diet can help you avoid choking and ensure adequate nutrition. These might include eating smaller, more frequent meals and choosing foods that are soft and easy to swallow.

As ALS progresses, it will become more and more difficult to move around and perform basic daily activities. A variety of supportive devices and equipment can help you avoid injury and remain independent. These may include:

• A neck (cervical) collar to support the head if the neck muscles become weak.
• Foot and ankle braces, a cane, a walker, or a wheelchair to help you stay mobile.
• Ramps, handrails, a raised toilet seat, or a shower seat.
• Erasable writing tablets, voice amplifiers, or other devices to help you communicate if speaking becomes difficult.

There are lots of other devices that can help with bathing, eating, dressing, and communicating. Talk to an occupational therapist for suggestions on what devices might be best and what changes might make it safer and easier for you to live in your home. Ask your health professional about having a home health nurse come to your home to find out about your needs.

Planning for the future

If you or someone in your family has ALS, learn as much as you can about the disease and the options for care. As the disease progresses, you may have choices about care and treatment. As you face these decisions, remember that what's right for one person with ALS may not feel right for another person. What you value and want are important factors in making these choices.

Some people want every possible medical treatment to sustain life, while others prefer measures to maintain their comfort without prolonging life. It may be helpful to think about what kind of medical treatment you want. Discuss and decide how aggressively you want to treat complications of the disease, such as breathing problems, difficulty eating, or pneumonia. These decisions may need to be revisited throughout the course of the disease because you may change your mind over time. Some questions for you to consider include the following:

• Do you want a tracheostomy when breathing problems become severe? Tracheostomy provides long-term breathing assistance by making an opening in your neck that leads to your windpipe: oxygen can then be delivered through a tube in the opening. There are less invasive forms of breathing assistance that can be used prior to tracheostomy, but most people with the disease eventually face the decision of whether they want long-term mechanical assistance.
• What type of treatment, if any, do you want if pneumonia or another serious lung infection develops?
• Do you want a feeding tube placed in your stomach when your ability to swallow is reduced or lost?