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Resources: Books, CD's and Video

Books By and/or About People-with ALS

You're Not You
Michelle Wildgen
Format: Hardcover
Pub. Date: May 2006

Rowing without Oars: A Memior of Living and Dying
Ulla-Carin Lindquist, Margaret Myers (Translator)
Format: Hardcover
Pub. Date: April 2006

Lou Gehrig's Disease
Melissa Abramovitz
Format: Library Binding
Library Edition
Pub. Date: February 2006

"Tales from the Bed: On Living, Dying and Having it all." New memoir by Jenifer Estess shares the inspiring story of her battle with Lou Gehrig's disease and her fight to help find a cure.  As Told to Valerie Estess, Foreword by Katie Couric
Format: Hardcover
Pub. Date: May 2004


Tuesdays with Morrie: An Old Man, a Young Man, and Life's Greatest Lesson
Mitch Albom
Format: Compact Disc
Unabridged, 4 CDs, 4 hrs.
Pub. Date: June 2004

"Learning to Fall : The Blessings of an Imperfect Life"
Philip Simmons
Format: Paperback
Bantam Trade Paperback Edition
Pub. Date: April 2003

"On Any Given Day"
Joe Martin, Ross Yockey
Format: Hardcover
Pub. Date: September 2000

"Morrie: In His Own Words"
Morrie Schwartz, Paul Solman (Introduction)
Format: Paperback
Pub. Date: January 1996

I Remember Running: The Year I Got Everything I Ever Wanted-and ALS
Darcy Wakefield, Foreword by Jonathan Eig
Format: Hardcover
Pub. Date: October 2005

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"Letting Go" Morrie's Reflections on Living While Dying By Morrie Schwartz Morrie Schwartz, Paul Solman (Introduction)
 Format: Hardcover
Pub. Date: September 1996

"How Will They Know If I'm Dead?"
Robert C. Horn, III
Format: Paperback
Pub. Date: November 1996

"Journeys with ALS" by David Feigenbaum Personal tales of courage and coping with Lou Gehrig's Disease Living in the shadow of ALS (textbook prognosis: three to five years) is a harsh journey down a road they didn't expect to take. In this book you will find 33 of these first-person journeys. Some are hopeful, some sad. A few are angry. All are powerful, real-life examples of people doing their best to cope, often with humor and high spirits.

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"On Eagle's Wings" by: Connie Bobo Provides step-by-step guidelines: What Friends Can Do to Help Gift Suggestions Practical preparations for the life-changes you will experience dealing with the early loss of mobility. Excerpts from the personal journals of Perry, an ALS victim, and his wife and caregiver give a candid portrayal of the fear, anger, pain, frustration, and guilt that accompany the battle against a terminal illness. From their personal experiences, you can learn practical and economical tips on care giving. "On Eagle's Wings" also contains laughter and love as Perry and his wife  `Prayed for the Best and Prepared for the Worst'.

"Falcon's Cry": A Desert Storm Memoir Michael Donnelly, Denise Donnelly Michael Donnelly's unforgettable story, is his courageous attempt to unearth the truth and force an acknowledgment of that truth by the government he and his fellow veterans defended with their lives.

"Lou Gehrig: The Luckiest Man" By David A. Adler. Gulliver Books, Harcourt Brace A new nicely illustrated children's book about Lou Gehrig seems suitable to help explain ALS to children.

"It Helps To Talk About It "Living, Not Dying, with Lou Gehrig's Disease
By: Bob MacLean
The ALS Association
21021 Ventura Blvd., Ste. 321
Woodland Hills, CA 91364
(800) 782-4747

"When The Music Stopped I Kept On Dancing" Angela Riggs author of "Voices of the Prairie" and has lived with ALS (Lou Gehrig's disease) for more than a decade. Her first book, as well as this one, was written by her, on her Macintosh, with a pencil wrapped in foam to fit over the ever diminishing grasp of her right hand, barely supported by her left, pressing letter by letter. Her indomitable spirit is an inspiration to all, and especially those who are limited in their physical activities. This title is currently out of print. However, you can order it used at Amazon

Medical Books

Amyotrophic Lateral Sclerosis : A Guide for Patients and Families, 2nd Edition by Hiroshi Mitsumoto (Editor), Theodore L. Munsat (Editor)
 

Amyotrophic Lateral Sclerosis: A Comprehensive Guide to Management Edited by: Hiroshi Mitsumoto, M.D. and Forbes H. Norris, Jr., M.D. Demos Publications, 386 Park Ave. S., Suite 201, New York, NY 10016 $39.95 per copy, plus $4.00 shipping and handling (NY state residents add sales tax)

"The Brain Wellness Plan: Breakthrough Medical, Nutritional, and Immune-Boosting Therapies" Dr. Jay Lombard, a leading neurologist and renowned nutritional scientist Carl Germano show readers how the foods they eat, combined with over-the-counter nutritional supplements, not only successfully address both the symptoms and root causes of neurological diseases, but also enhance health. has a chapter devoted to ALS and the antioxidants and other supplements which may be helpful in treating the disease.

Adams'& Victor's Principles of Neurology, 6th ed. Adams, Raymond D., Maurice Victor, and Allan H. Ropper. New York: McGraw Hill, 1997.

Brown, Robert H. "The motor neuron diseases." In Harrison's Principles of Internal Medicine, 14th ed., edited by Anthony S. Fauci, et al., pp. 2368:2372. New York: McGraw-Hill, 1998.

Feldman, Eva L. "Motor neuron diseases." In Cecil Textbook of Medicine, 21st ed., edited by Lee Goldman and J. Claude Bennett, pp. 2089:2092. Philadelphia: W. B. Saunders, 2000.

Kimura, Jun, and Ryuji Kaji. Physiology of ALS and Related Diseases. Amsterdam: Elsevier Science, 1997.

Mitsumoto, Hiroshi, David A. Chad, Erik Pioro, and Sid Gilman. Amyotrophic Lateral Sclerosis. New York: Oxford University Press, 1997.

Coping

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"Realities in Coping with Progressive Neuromuscular Disease"
Edited by Claire F. Leach, Leon I. Charash, Robert E. Lovelace, Stewart G. Wolf, Austin H. Kutscher, David Price Roye
The Charles Press, P.O. Box 15715, Philadelphia, PA 19103; (215) 545-8933 $34.95 plus $5.50 (first copy), $2.00 (each additional copy) for shipping and handling.

Caregiver

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"Caring and Coping When a Loved One is Seriously Ill" - By Earl A. Grollman Beacon Press Order Dept., 25 Beacon St., Boston, MA 02108; (800) 706-2220 $10.00 (paperback) plus shipping and handling

"Family Caregiver's Guide" - By Joan Ellen Foyder
The Futuro Company, 5801 Mariemont Ave., Cincinnati, OH 45227
(513) 271-3782; $14.95 per copy, plus $2.50 shipping and handling.

"Share the Care" - By Cappy Caposella and Sheila Warnock
Simon and Schuster Fireside, 1230 Avenue of the Americas, New York, NY 10020 $13.00 (paperback); ISBN 0684811367

" Palliative Care in Amyotrophic Lateral Sclerosis" (Motor Neuron Disease) by David Oliver (Editor), Gian Domenico Borasio (Editor), Declan Walsh (Editor) - Editorial Reviews Book Info Third author, Declan Walsh, is with Ohio State Univ., Cleveland. Provides a reference of all involved in the care of patients with ALS. The palliative care approach to the care of ALS is outlined and the role of the multidisciplinary team is emphasized. All contributors are clinicians and provide guidelines throughout the disease process.

Books of Inspiration

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"Love, Medicine & Miracles" & "Prescriptions for Living: Inspirational Lessons for a Joyful, Loving Life" By: Bernie Siegel "The darkest times of life are often the most meaningful. These are the times when we cannot deny our fears and are forced to pay attention to what we are feeling inside." When bad things happen to the good people around us, it's a golden opportunity to look within, and take stock of what we see.

"Hope Springs Eternal, Surviving a Chronic Illness" A True Story by David Atkinson this book, represents a path of hope for anyone facing a serious illness, the caregivers and physicians, and those individuals who want to take a preventative approach to illness. It also represents a path to greater understanding of each of us as whole beings. ISBN: 0876044089

"Heaven.... Your Real Home" by Joni Eareckson Tada " Heaven may be as near as next year or next week, so it makes sense to spend some time here on earth thinking candid thoughts about that marvelous future reserved for us." ISBN: 0-310-20411-9

"When Bad Things Happen To Good People" By Harold S. Kushner ISBN: 0380603926 It's not a theological exercise, just a very human and realistic perspective on how to keep going in the face of defeat. Kushner offers spiritual guidance that goes beyond the limits of traditional religious boundaries.

"Dying Well": The Prospect for Growth at the End of Life" The stories of individuals in Dr. Byock's book will move and inspire you to change your feelings about the end of your life, and also your feelings about your life in the present. Ira Byock

"The Courage To Laugh" Humor, Hope, and Healing In The Face Of Death And Dying By Allen Klein Published by Jeremy P.Tarcher/Putnam. This remarkable book is a poignant and inspirational reminder of the life-affirming nature of the human spirit, even under the most difficult circumstances. In the words cartoon character Roger Rabbit, "Sometimes a laugh is of the only weapon we have." 215 pp. Publication date: September, 1998 ISBN: 0874779294 (soft cover)

Cook books or Recipes

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I-Can't-Chew Cookbook: Delicious Soft Diet Recipes for People with Chewing, Swallowing, and Dry-Mouth Disorders
J. Randy Wilson, Foreword by Mark A. Piper
ISBN: 0897934008
Format: Paperback, 204pp
Pub. Date: May 2003
Publisher: Hunter House, Incorporated

Easy-to-Swallow, Easy-to-Chew Cookbook
Donna L. Weihofen, Paula A. Sullivan, JoAnne Robbins
ISBN: 0471200743
Format: Paperback, 256pp
Pub. Date: July 2002
Publisher: Wiley, John & Sons, Incorporated
Edition Number: 1

MDA MEALS for Easy Swallowing

Magazines

Manuals

The ALS Association "Living With ALS Manualsİ"  "These manuals were created because of the rapidly expanding information and research in the clinical management of ALS. These cornerstone educational materials have been updated to reflect advancement in patient care and are designed to inform and educate people about ALS in a comprehensive and easily understood format. They address many of the common concerns and issues that face people living with ALS." The ALS Association

References: video tapes

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"A Brief History of Time" From Paramount Pictures A film about a genius/physicist, Stephen Hawking, and his remarkable accomplishments in the field of physics in spite of living with ALS for 30 years. Check your local Video Store.

"Caring for the Caregiver" - By Ismail and Cheryl Tsieprati
Valona Productions, 5105 E. Los Angeles Ave., # E-178, Simi Valley, CA 93063 (805) 527-8557 for messages or home: (805) 527-9366
$19.95 (includes shipping and handling)
An educational video that explores ways caregivers can take better care of themselves, reduce stress, make life easier and more enjoyable, and find help when it's needed.

"It's Your Choice" Valona Productions, 5105 E. Los Angeles Ave., # E-178, Simi Valley, CA 93063 (805) 527-8557 for messages or home: (805) 527-9366 $19.95 (includes shipping and handling)
An educational video presenting information to people who need to make an informed decision about whether to use a ventilator.

"Pride of the Yankees" The Lou Gehrig Story (1942) starring Gary Cooper.

Amyotrophic Lateral Sclerosis
Piera Pasinelli (Editor), Robert H. Brown (Editor), Michael Swash (Editor)
Format: Hardcover
Pub. Date: January 2006

Amazon Books www.amazon.com
Barnes and Noble www.barnesandnoble.com

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