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Neuromuscular Disease Resources

ALS Support Group

The Eleanor & Lou Gehrig MDA/ALS Center offers two support groups for patients diagnosed with amyotrophic lateral sclerosis (ALS) and their caregivers. The MDA has sponsored the New York City group for over 15 years and now also supports a second group in Westchester.

The groups' primary goals are to educate patients, families and professionals about living with ALS. The support group is educationally oriented and includes a key speaker who presents on a particular subject. Topics may include alternative therapies, home meal delivery service, companion programs, research updates, physical, speech, and occupational therapy, medical equipment, respiratory devices, and financial planning, and more.

The group's second aim is to mobilize the expression of human feelings related to living with the disease. This is done primarily by "telling one's story". The empathy that exists between individuals within the group arises from shared challenges and the "truth" of "one who has been there." During this time, individuals have the opportunity to listen to each other and to give and receive support through the exchange of experiences, feelings, and coping techniques.

ALS

Caregiver Sites

Home Care/Hospice

Nursing Homes

Bibliography

  • Mitsumoto, H. Amyotrophic Lateral Sclerosis: A Guide for Patients and Families 3rd Edition,  Demos Medical Publishing, 2009
    This important book covers every aspect of living with ALS, from clinical features of the disease to an overview of symptom management to understanding its diagnosis. Major sections deal with overseeing medical care and rehabilitation, living with ALS, the disease's advanced phase, end-of-life issues, and resources. Extensively revised and rewritten, this edition contains new chapters on the latest approaches to treating ALS symptoms, the use of noninvasive ventilators, multidisciplinary team care, new guidelines being developed by the American Academy of Neurology for patients with ALS, the use of riluzole (Rilutek), and more.
  • Remen, R. Kitchen Table Wisdom: Stories That Heal, Riverhead Books, 1997
  • Bolen, J.S. Close to the Bone: Life-Threatening Illness and the Search for Meaning, Touchstone Books, 1998
  • Viorst, J. Necessary Losses: The Loves, Illusions, Dependencies, and Impossible Expectations That All of Us Have to Give Up in Order to Grow, Ballantine Books, 1986
  • Caposella, C., Warnock, S., Miller, S. Share the Care: How to Organize a Group to Care for Someone Who is Seriously Ill,  Fireside Books, 1995
  • Polin, I. and Golant, S. Taking Charge: Overcoming the Challenges of Long-Term Illness,  Times Books, 1994
  • Strong, M. Mainstay: The Well-Spouse of the Chronically Ill,  Bradford Books, 1997