Coping and support
Learning you have ALS can be devastating. The following tips may help you and your family cope:
- Take time to grieve. The news that you have a fatal condition that will reduce your mobility and independence can be difficult. You and your family will likely experience a period of mourning and grief after diagnosis.
- Be hopeful. Your team will help you focus on your ability and healthy living. Some people with amyotrophic lateral sclerosis live much longer than the three to five years usually associated with this condition. Some live 10 years or more. Maintaining an optimistic outlook can help improve quality of life for people with ALS.
- Think beyond the physical changes. Many people with amyotrophic lateral sclerosis lead rich, rewarding lives despite physical limitations. Try to think of ALS as only one part of your life, not your entire identity.
- Join a support group. You may find comfort in a support group with others who have ALS. Your family members and friends helping with your care also may benefit from a support group of other ALS caregivers. Find support groups in your area by talking to your doctor or by contacting the ALS Association.
Make decisions now about your future medical care. Planning for the future allows you to be in control of decisions about your life and your care.
With the help of your doctor, hospice nurse or social worker, you can decide whether you want certain life-extending procedures.
You can also decide where you want to spend your final days. You may consider hospice care options. Planning for the future can help you and your loved ones put to rest some common anxieties.