Self-management

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.

Sept. 22, 2016
References
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  2. Elman LB. Clinical features of amyotrophic lateral sclerosis and other forms of motor neuron disease. http://www.uptodate.com/home. Accessed July 12, 2016.
  3. Maragakis NJ. Epidemiology and pathogenesis of amyotrophic lateral sclerosis. http://www.uptodate.com/home. Accessed July 12, 2016.
  4. McCluskey L. Familial amyotrophic lateral sclerosis. http://www.uptodate.com/home. Accessed July 12, 2016.
  5. Ingre C, et al. Risk factors for amyotrophic lateral sclerosis. Clinical Epidemiology. 2015;7:181.
  6. Crum BA (expert opinion). Mayo Clinic, Rochester, Minn. July 25, 2016.
  7. Galvez-Jimenez N. Symptom-based management of amyotrophic lateral sclerosis. http://www.uptodate.com/home. Accessed July 12, 2016.
  8. Elman LB, et al. Diagnosis of amyotrophic lateral sclerosis and other forms of motor neuron disease. http://www.uptodate.com/home. Accessed July 12, 2016.
  9. Miller RG, et al. Practice parameter update: The care of the patient with amyotrophic lateral sclerosis: Multidisciplinary care, symptom management, and cognitive/behavioral impairment (an evidence-based review): Report of the Quality Standards Subcommittee of the American Academy of Neurology. Neurology. 2009;73:1227.
  10. Neurological diagnostic tests and procedures. National Institute of Neurological Disorders and Stroke. http://www.ninds.nih.gov/disorders/misc/diagnostic_tests.htm. Accessed July 12, 2016.
  11. Choudry RB, et al. Disease modifying treatment of amyotrophic lateral sclerosis. http://www.uptodate.com/home. Accessed July 12, 2016.
  12. ALS Association chapter support groups. The ALS Association. , http://www.alsa.org/community/support-groups/. Accessed July 12, 2016.
  13. Services in your community. The ALS Association. http://www.alsa.org/community/certified-centers/. Accessed July 12, 2016.
  14. Riggin ER. Allscripts EPSi. Mayo Clinic, Rochester, Minn. May 10, 2016.