Amyotrophic lateral sclerosis


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Coping and support

By Mayo Clinic staff

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 rob you of your mobility and independence can be difficult to absorb. If you are newly diagnosed, you and your family will likely experience a period of mourning and grief.
  • Be hopeful. Some people with amyotrophic lateral sclerosis live much longer than the three to five years typically 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 sharing your concerns 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 others who care for people with amyotrophic lateral sclerosis. 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. And you can determine where you want to spend your final days. This can help you and your loved ones put to rest certain anxieties about the future.
Treatments and drugs
References
  1. Amyotrophic lateral sclerosis fact sheet. National Institute of Neurological Disorders and Stroke. http://www.ninds.nih.gov/disorders/amyotrophiclateralsclerosis/detail_amyotrophiclateralsclerosis.htm. Accessed Sept. 28, 2010.
  2. Elman LB, et al. Clinical features of amyotrophic lateral sclerosis. http://www.uptodate.com/home/index.html. Accessed Sept. 28, 2010.
  3. Maragakis NJ, et al. Epidemiology and pathogenesis of amyotrophic lateral sclerosis. http://www.uptodate.com/home/index.html. Accessed Sept. 28, 2010.
  4. McCluskey L. Familial amyotrophic lateral sclerosis. http://www.uptodate.com/home/index.html. Accessed Sept. 28, 2010.
  5. Neurological diagnostic tests and procedures. National Institute of Neurological Disorders and Stroke. http://www.ninds.nih.gov/disorders/misc/diagnostic_tests.htm. Accessed Sept. 28, 2010.
  6. ALS in the military: Unexpected consequences of military service. ALS Association. http://www.alsa.org/files/pdf/als_military_paper.pdf. Accessed Sept. 28, 2010.
  7. Elman LB, et al. Diagnosis of amyotrophic lateral sclerosis. http://www.uptodate.com/home/index.html. Accessed Sept. 28, 2010.
  8. Galvez-Jimenez N, et al. Symptom-based management of amyotrophic lateral sclerosis. http://www.uptodate.com/home/index.html. Accessed Sept. 28, 2010.
  9. Choudry RB, et al. Pharmacologic treatment of amyotrophic lateral sclerosis. http://www.uptodate.com/home/index.html. Sept. 28, 2010.
  10. Why is exercise important? In: Everyday Life With ALS: A Practical Guide. Muscular Dystrophy Association. http://www.als-mda.org/publications/everydaylifeals/ch8/. Accessed Sept. 28, 2010.
  11. 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.
  12. Miller RG, et al. Practice parameter update: The care of the patient with amyotrophic lateral sclerosis: Drug, nutritional, and respiratory therapies (an evidence-based review): Report of the Quality Standards Subcommittee of the American Academy of Neurology. Neurology. 2009;73:1227.
  13. Covering all the bases. ALS Association. http://www.alsa.org/coveringallthebases/. Accessed Oct. 21, 2010.
  14. Armon C. Smoking may be considered an established risk factor for sporadic ALS. Neurology. 2009;73:1693.
  15. Gallo V, et al. Smoking and risk for amyotrophic lateral sclerosis: Analysis of the EPIC cohort. Annals of Neurology. 2009;65:378.
  16. Mayadev AS, et al. The amyotrophic lateral sclerosis center: A model of multidisciplinary management. Physical Medicine and Rehabilitation Clinics of North America. 2008;19:619.
  17. Crum BA (expert opinion). Mayo Clinic, Rochester, Minn. Oct. 6, 2010.
DS00359 Dec. 2, 2010

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