This page contains ALS resources to help you with your fight against ALS; including information about ALS and Lou Gehrig's disease.
We have separated the resources into the following groups:
ALS is not a curable disease, but it is a treatable one. Treatments are now available that can make a major difference in prolonging life and enhancing the quality of life for people with the disease, and there are treatments for many of the symptoms of ALS that can help ease its burden. Although the diagnosis of ALS can initially be devastating, the vast majority of people discover new courage from within to battle this disease and live life with vigor and enthusiasm. The information in this book will prove useful to people with ALS and their families both in managing the disease and living within its limitations.
Luckiest Man: The Life and Death of Lou Gehrig
ALS is associated with the New York Yankees first baseman Lou Gehrig who played in a record 2,130 consecutive games before the disease forced his premature retirement in 1939.
Jonathan Eig—the author of a new biography on Lou Gehrig—has been receiving praise for his work. Eig’s biography addresses different aspects of Gehrig’s life before he was struck by ALS, with his athleticism and career as a professional baseball player. Eig portrays Gehrig as a human being who, throughout his life, was admirable while not being perfect.
Luckiest Man: The Life and Death of Lou Gehrig includes letters that Gehrig had written to his doctor, Paul O’Leary. These letters are the only available record of Gehrig’s last days, and detail his aches, pains, and strong desire for a cure.
Luckiest Man follows Gehrig’s family relationships. Attention is also given to the friction between Gehrig and Babe Ruth.
In the last chapters of the biography, in which Gehrig is succumbing to ALS, the medical aspect of his life story is presented with compassion.
The biography—published in April 2005—is available for $37.50 in book or cassette form. The running time for the audio version is approximately six hours, and the biography can be purchased from www.simonandschuster.ca
Caddy for Life
The Bruce Edwards Story by John Feinstein
An excerpt http://www.twbookmark.com/books/65/0316777889/chapter_excerpt18543.html
Tales from the Bed
On Living, Dying, and Having It All
By Jenifer Estess
As told to Valerie Estess
Foreword by Katie Couric
Sisters in the entertainment world tell their story and that of their foundation - Project ALS
An excerpt - http://www.simonsays.com/content/content.cfm?sid=33&pid=488702&agid=2
His Brother's Keeper
A Story from the Edge of Medicine by Jonathan Weiner
The story of the Heywood brothers - Stephen with ALS and Jamie who responds by founding the ALS Therapy Development Foundation.
An excerpt - http://www.harpercollins.com/catalog/excerpt_xml.asp?isbn=006001007X
ALS-TDF - http://www.als.net/
Tuesdays with Morrie
An Old Man, A Young Man, And Life's Greatest Lesson by Mitch Albom
Morrie Schwartz was Mitch Albom's college professor and mentor. Knowing he was dying, Morrie visited with Mitch (an ALS patient) in his study every Tuesday. Their rekindled relationship turned into one final "class": lessons in how to live. This book has been on the best seller list over one year.
Wanda Gushue Behind Those Eyes, Our Journey with ALS
An excerpt from the back of Wanda's book:
ALS…three letters that change people’s lives. FOREVER.
How, then, is it possible that someone can feel privileged to have made such a journey and feel convinced that her life is richer because of it?
Wanda’s and Christopher’s journey with ALS – amyotrophic lateral sclerosis- was inundated with ups and downs, laughter and tears, and challenges and changes – all coming at breakneck speed. However it was their love, commitment, and the wedding promises made on March 21, 1998, to love, to comfort, to honour, and to protect that prevailed.
The Burden of Neurological Diseases, Disorders and Injuries in Canada published by the Canadian Institute of Health Information, 2007
So Much So Fast
In So Much So Fast, Oscar-nominated independent filmmakers Steven Ascher and Jeanne Jordon take viewers into the world of a family coping with ALS.
What would you do if you were 29 years old and found you may only have a few years to live? Stephen Heywood, who discovered he had ALS at 29, chose to get married, raise a son and rebuild two houses.
So Much So Fast has received excellent reviews since its release. John Doyle of The Globe and Mail calls it “a compelling account,” while The Boston Globe’s four-star review calls it “Triumphant! Unforgettable.” Slate Magazine calls it “Humorous. Impressive. Effortlessly profound,” and Entertainment Weekly gives the film an “A-.”
Filmmakers Ascher and Jordan were touched by ALS when Jordon’s mother, who is featured in their Sundance Film Festival Grand Prize winner Troublesome Creek, died of the disease in 1995. “A key reason we made So Much So Fast is so that families dealing with ALS would have something to help them understand and cope with it,” said Ascher.
Directors, Producers and Writers: Steven Ascher and Jeanne Jordon
Purchase online: www.somuchsofast.com
Price: $26.95; taxes and shipping extra
Duration: 87 minutes
The Man Who Learned to Fall A feature documentary by Garry Beitel
Phil Simmons, associate professor of English at Lake Forest College in Illinois was diagnosed with ALS when he was 35. Simmons celebrates the wonder of life even as he is slowly dying of this disease. As his muscles deteriorate and his body becomes increasingly paralyzed, Simmons continues to 'wrestle joy from heartbreak' at each stage of his ongoing losses.
"At one time or another, each of us confronts an experience so powerful, bewildering, joyous, or terrifying, that all our efforts to see it as a problem are futile. Each of us is brought to the cliff's edge. At such moments we can either back away in bitterness or confusion, or leap forward into mystery," says Simmons, in his book "Learning to Fall," published by Bantam Dell.
From Learning to Fall – published by Bantam Dell
Duration: 77 minutes
Price: Video $30, shipping and taxes are extra
DVD $40, shipping and taxes are extra
Beitel/Lazar Productions Inc.
2218 Old Orchard, Montreal, PQ H4A 3A8
Director: Dan Curtis
Producers: Adam Symansky, Sally Bochner and Pierre Lapointe
Writer: Jim Osborne
Price: $19.95 individuals; $49.95 institutions
Duration: 90 minutes
To order contact the NFB at 1-800-267-7710
This film follows Robert Coley-Donohue over the last three years of his life. A retired machinist, he is determined to make the most of his time. He lives independently for as long as possible. In his typically understated way, he says, "This slow deterioration is not fun. Not fun at all." With the help of homecare workers, Victoria Hospice and his three devoted children, Coley-Donohue remains at home. But the idea of staying and dying at home soon runs up against harsh realities. His 24-hour care is expensive and eventually, Coley-Donohue decides to move to a hospital where he spends the last nine months of his life. Coley-Donohue's experience is arduous, but also filled with hope and healing.
Making Hard Decisions:
The Essence of Being Human (30 minutes)
Making Hard Decisions:
Insights for Healthcare Providers (20 minutes)
This conversation between Dr. Barry and Mrs. Karen Smith with broadcast journalist Judy Maddren offers an opportunity see how a couple faces the challenge of making hard decisions. They discuss in a frank and intimate way their feelings, expectations and fears in the context of a life-threatening illness.
These videos or DVDs are available from ALS Canada. Contact Indra Patterson to order a copy.
firstname.lastname@example.org, 1-800-267-4257 x201. Cost $20.00 postage included.
"Elizabeth's Hope" is the inspiring story of an Ontario woman's personal and public crusade against ALS. The one-hour documentary captures the passion of Elizabeth Grandbois, a person living with ALS and the organizer of a yearly benefit concert to raise funds and awareness for this devastating disease.
Diagnosed with ALS in 1997, Grandbois has vowed to spend the rest of her life helping to accelerate the search for a cure and to improve the quality of life for others who suffer from the disease. A touching moment in the documentary takes place when Elizabeth's father speaks of his daughter's altruistic and exceptional character: "And then suddenly, this daughter of mine who is so special said I have to do something about this".
"My time is pressing, so I'm pressing", says Elizabeth Grandbois. She is a true survivor and her strength of spirit shines in "Elizabeth's Hope."
ALS is a progressive and fatal neuromuscular disease that two to three Canadians die from daily. People who suffer from ALS are often completely aware of what is happening to their bodies, as the disease does not usually impact the senses and the mind may remain unaffected. Approximately 2,500 Canadians currently live with ALS. There is no cure for this devastating disease; research is the only hope.
This DVD is available from ALS Canada. Contact Indra Patterson to order a copy.
email@example.com, 1-800-267-4257 x201. Cost $20.00 postage included.