Amyotrophic Lateral Sclerosis (ALS) (cont.)
How do I prevent amyotrophic lateral sclerosis (ALS)?
There is no known way to prevent ALS. This is one of the goals of ongoing research on ALS.
What is the outlook for amyotrophic lateral sclerosis (ALS)?
Right now, no cure is available for ALS. It results in the death of affected patients. Most people with ALS die within five years of the first symptoms, although a few people have lived as long as 10 years. Most people with ALS die of respiratory failure or infections related to respiratory disability.
If you have ALS, you should take the opportunity to express your wishes about medical care, estate planning, and personal issues while you are still able.
- Preferences concerning medical care at the end of life should be clarified early and documented in your medical chart. Your spouse and other close family members should understand your wishes. Early clarification of these wishes prevents conflicts later when you are not able to speak for yourself.
- You should consult a lawyer as early as possible. Personal affairs should be settled. Later in the disease, you may not be able to sign papers or even communicate your wishes.
Support Groups and Counseling for Amyotrophic Lateral Sclerosis (ALS)
Living with ALS presents many new challenges, both for the affected person and for family and friends.
- You will naturally have many worries about the disabilities that come with the disease. How long you will be able to care for your family and home, hold your job, and continue the friendships and activities you enjoy. You worry about how your family will cope with the demands of your care. You wonder how they will manage when you are no longer able to contribute. You may feel anxious about death.
- Your loved ones also feel anxious about your death and how much they will miss you. They wonder how they will care for you through your illness. Money is almost always a concern.
- Many people in this situation feel anxious and depressed, at least sometimes. Some people feel angry and resentful; others feel helpless and defeated.
For both you and your caregivers, talking about feelings and concerns may help.
- Your friends and family members can be very supportive. They may be hesitant to offer support until they see how you are coping. Don't wait for them to bring it up. If you want to talk about your concerns, let them know.
- Some people don't want to "burden" their loved ones, or prefer talking about their concerns with a more neutral professional. A social worker, counselor, or member of the clergy can be helpful if you want to discuss your feelings and concerns about having ALS. Your primary care provider or neurologist should be able to recommend someone.
- You or your family members may be helped profoundly by talking to other people who have the disease or to their family members. Sharing your concerns with others who have been through the same experience can be remarkably reassuring. This is why support groups exist. Support groups offer the opportunity for people whose lives are affected by ALS to get together, whether in person, on the telephone, or on the Internet.
- Because ALS is relatively rare, finding a support group in your area may be difficult, unless you live near a large medical center with many medical specialists. There are groups on the Internet that can help you find the support you need.
For more information about support groups, contact these agencies:
- ALS Association (ALSA) (800) 782-4747 or (818) 880-9007
- Les Turner ALS Foundation - (888) ALS-1107 or (847) 679-3311
- Family Caregiver Alliance, National Center on Caregiving - (800) 445-8106
- Doctor's Group
Medically reviewed by Joseph Carcione, DO; American board of Psychiatry and Neurology
"Diagnosis of amyotrophic lateral sclerosis and other forms of motor neuron disease"
Medically Reviewed by a Doctor on 6/16/2016
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