Family and Caregiving Resources for People with ALS

by Alyssa Quintero on Tue, 2007-05-01 09:16

This list provides a good starting point for answers about living with ALS. We’ve highlighted a selected list of organizations that provide family and caregiver support for people with ALS. You’ll also find books about caregiving, as well as books by people with ALS.

Be sure to check MDA’s Chat calendar to learn more about the “Living with ALS” chat, an online forum and support group for people with ALS, their families and caregivers. And, you can look for past MDA/ALS Newsmagazine articles on related topics.

ALS Care
(336) 340-6400
ALS Care offers telephone consultations with a registered nurse, specializing in ALS home care and other related issues.
(888) 405-4242
Part of the AgeNet Eldercare Network, this site offers resources for caring for an elder relative.

(651) 452-7940
This group offers free Web sites to help connect family and friends during significant life events. Some people in the MDA community have made use of this service.

Family Caregiver Alliance
(800) 445-8106
People can locate programs at national, state and local levels through a searchable database.

Family Caregiving 101
The site includes a message board for family caregivers.

Lotsa Helping Hands
It’s an easy-to-use, private group calendar, specifically designed for organizing helpers among family and friends during a crisis or chronic health situation.

National Caregivers Library
(804) 327-1112
The library, organized into 18 resource categories, consists of articles, forms, checklists and links.

National Family Caregivers Association
(800) 896-3650
NFCA educates, supports and speaks for the more than 50 million Americans who care for loved ones with disabilities or chronic conditions.

National Respite Locator Service
(919) 490-5577
The service helps parents, caregivers and professionals find respite services in their area to match their specific needs.

(646) 467-8097
The organization promotes group caregiving and provides support, with a focus on preventing caregiver burnout.

Strength for Caring
(866) 466-3458
Part of The Caregiver Initiative, the site offers various resources, including a caregiver manual, message boards and more information about tips for daily living.

Turning Points in ALS
The Web site provides stories from people with ALS and caregivers about turning points in the disease. The site offers a resource list.

Well Spouse Association
(800) 838-0879
The national organization gives support to family members and friends of people with chronic illnesses and disabilities.


ALS forums

Living with ALS

NeuroTalk Communities — ALS


Books can be ordered through your local library or bookstore, or online.

Always On Call: When Illness Turns Families Into Caregivers, edited by Carol Levine, 2000, United Hospital Fund of New York.

Candlelights for the Family Caregiver’s World: Spiritual Keys for Avoiding Caregiver Burnout and Promoting Inner Peace, by Alice Johnson in collaboration with husband, John Johnson Jr., Ed.D., 2001, Mal-Jonal Productions.

Caregivers and Personal Assistants, by Alfred H. DeGraff, MA, SEA, 2002, Saratoga Access Publications.

The Fearless Caregiver, edited by Gary Barg, 2001, Caregiver Media Group.

The Resourceful Caregiver: Helping Family Caregivers Help Themselves, by the National Family Caregivers Association, 1996, Mosby Lifeline.

Share the Care: How to Organize a Group to Care for Someone Who Is Seriously Ill, by Cappy Capossela and Sheila Warnock, Simon and Schuster Adult Publishing Group, 2004.


Bigger than the Sky — the True Love Story of Emilie and Her Grandfather, by Helene E.D. Nichols, 2003, Xlibris.

Challenging Nature Photography, by Angelo Sciulli, 2003, eBookstand

Falcon’s Cry: A Desert Storm Memoir, by Major Michael Donnelly, USAF retired, with Dennis Donnelly, 1998, Praeger.

Falling Practice: What Illness Teaches Us, by Karen Jorgensen, 2005, Silent Press.

How Will They Know If I’m Dead? Transcending Disability and Terminal Illness, by Robert C. Horn III, 1997, St. Lucie Press.

I Remember Running, by Darcy Wakefield, 2005, Avalon Publishing.

Learning to Fall: The Blessings of an Imperfect Life, by Philip Simmons, 2002 (2nd printing), Bantam Books.

Letting Go: Morrie’s Reflections of Living While Dying, by Morrie Schwartz, 1996, Walker Publishing.

Luckiest Man: The Life and Death of Lou Gehrig, by Jonathan Eig, 2005, Simon & Schuster.

On Any Given Day, by Joe Martin and Ross Yockey, 2000, John F. Blair.

On Eagle’s Wings: Fulfilling the Needs of Your Terminally Ill Loved Ones, by Connie Crozier Bobo, 1998, Creel.

Terminally Sane: One Man’s Journey Beyond Lou Gehrig’s Disease, by Jay A. Rouelle, 2001 (2nd printing), Jarou Publishing.

Tonight at Noon: A Love Story, by Sue Graham Mingus, 2002, Pantheon Books.

Tuesdays with Morrie, by Mitch Albom, 1997, Doubleday.

When It Rains … A Novel, by Marjorie Spoto, 2004, Weaver Books.

You’re Not You, by Michelle Wildgen, 2006, St. Martin’s Press.

Alyssa Quintero
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