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 Association
- ALS Digest. This helpful email list has been set up to serve the world-wide ALS community. It's a mix of information that is not reviewed by a doctor or edited. It includes questions, comments and discussions from ALS patients and caregivers world-wide; press releases and articles about ALS research; and information and discussions about resources for living with ALS. Contact moderator Bob Broedel to subscribe at: firstname.lastname@example.org
- ALS Untangled
- ART for ALS
- Genetic Testing
- Les Turner ALS Foundation
- Lou Gehrig
- Muscular Dystrophy Association
- National Institutes of Health
- Ride for Life
- Supplement - International ALS Conference: To Promote Clinical or Patient-Oriented Research to Find the Pathogenesis of ALS
- Wings Over Wall Street
- World Federation of Neurology
- National Alliance for Caregiving
- National Family Caregivers Association
- National Respite Locator
- Well Spouse Foundation
- National Association for Home Care
- National Hospice and Palliative Care Organization
- Assisted Living
- 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