Medical Textbooks 

 Disease Management and Coping 

 Personal Stories 

 Books for and about Children 

 Bereavement 

 Video Tapes 

 Cookbooks for ALS Patients 

Most books, including those out of print, can be ordered online through  amazon.com  or other Internet bookstores.

Medical Textbooks

Amyotrophic Lateral Sclerosis
By Hiroshi Mitsumoto, M.D., et al
Oxford University Press
2001 Evans Road
Gary, NC 27513
(800) 451-7556
ISBN: 0803602693

Amyotrophic Lateral Sclerosis: Diagnosis and Management for the Clinician
Edited by: Jerry M. Belsh, MD and Philip L. Schiffman, MD
Futura Publishing Company, Inc.
135 Bedford Road
P.O. Box 418
Armonk, NY 10504-0418
(914) 273-1014
ISBN: 0879936282

Palliative Care in Amyotrophic Lateral Sclerosis: Motor Neuron Disease
By David Oliver, Gian Domenico Borasio and Declan Walsh
Oxford University Press
ISBN 0192637667

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Disease Management and Coping

Amyotrophic Lateral Sclerosis
By Robert G. Miller, M.D., Deborah Gelinas, M.D. and Patricia O'Connor, RN
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. Multidisciplinary teams in specialized ALS centers are providing top quality care and comprehensive rehabilitation for persons with ALS.
 Demos Medical Publishing 
ISBN: 1932603069
$22.95

Amyotrophic Lateral Sclerosis: A Guide For Patients and Families, 2nd Edition
By Hiroshi Mitsumoto, M.D. & Theodore L, Munstat, M.D.
This comprehensive guide covers every aspect of the management of ALS. Beginning with discussions of its clinical features of the disease, diagnosis, and an overview of symptom management, major sections deal with medical and rehabilitative management, living with ALS, managing advanced disease and end-of-life issues, and resources that can provide support and assistance.
 Demos Medical Publishing 
ISBN:1888799285
$39.95

ALS: Maintaining Mobility
This is a guide to physical therapy and occupational therapy. It illustrates techniques for energy conservation, managing architectural barriers and employing adaptive devices.
ALS Neurosensory Center
6501 Fannin Street, Room B310
Houston, TX 77030

Living with ALS
Six manuals on managing ALS to assist patients, their families, and health care practitioners:
1. What's it all About
2. Coping with Change
3. Managing Your Symptoms and Treatment
4. Functioning When Your Mobility is Affected
5. Adjusting to Swallowing and Speaking Difficulties
6. Adapting to Breathing Changes
 The ALS Association 
27001 Agoura Road, Suite 150
Calabasas Hills, CA 91301-5104
(800) 782-4747

Amyotrophic Lateral Sclerosis: A Guide to Patient Care
Edited by James T. Caroscio, M.D.
Thieme Medical Publishers, Inc.
New York, NY
ISBN: 0865772460

The Comfort of Home: An Illustrated Step-by Step Guide for Caregivers, 2nd Edition
By Maria M. Meyer with Paul Derr, RN
In this book, the authors provide an excellent guide to caregiving in the home. A chronological structure is used to define preparation for caregiving, the day-to-day expectations, and a listing of numerous resources to augment the content.
CareTrust Publications LLC
Portland, OR
ISBN: 0966476735

Family Caregiver's Guide: The Home Health Care Efficiency System that Really Works
By Joan Ellen Foyder
An easy step-by-step guide to caring for a patient at home. This book helps take the frustration out of home patient care by solving hundreds of everyday problems.
The Futuro Company
5801 Mariemont Avenue
Cincinnati, OH 45227
(513) 271-3782
ISBN: 0961739207

Beyond Rage: Mastering Unavoidable Health Changes
By JoAnn LeMaistre, PhD
This book written for patients, family, friends and medical personnel is designed to help people master the emotional and psychological challenges of chronic illness, physical handicaps, difficult recoveries and aging.
Alpine Guild
P.O. Box 183
Oak Park, IL 60303
ISBN: 0931712114
Out of Print

Realities in Coping with Progressive Neuromuscular Diseases
This book brings together 51 eminent authorities on ALS focusing on a variety of different coping strategies to offer to patients and families, as well as health professionals
Charles Press Publishers, Inc.
P.O. Box 15715
Philadelphia, PA 19103
ISBN: 0914783203

Mainstay: For the Well Spouse of the Chronically Ill
By Maggie Strong
Bradford Books
ISBN: 0965717909

We Are Not Alone: Learning to Live with Chronic Illness
By Sefra Kobrin Pitzele
This book offers practical strategies and inspiration to people with chronic illness; not specific to ALS.
Workman Publishing
708 Broadway
New York, NY 10003
(212) 254-5900
ISBN: 0894801392

Dying at Home: A Family Guide for Care Giving
By Andrea Sankar
ISBN: 0801842301

In the Shadows: Living and Coping with a Loved One's Chronic Illness
By Dr. David Luterman
Dr. Luterman is a professor of communication disorders who has given workshops on the impact of disabling disease on the patient's family. The book details his family's struggle with his wife's multiple sclerosis.
Jade Press
Box 822
Bedford, MA 01730
ISBN: 0964486202

When A Loved One Is Ill: How To Take Better Care of Your Loved One, Your Family, and Yourself
By Leonard Felder, Ph.D.
New American Library
1633 Broadway
New York, NY 10019
Out of Print

Living With Grief When Illness is Prolonged
By Kenneth Doka
Hospice Foundation of America
Washington, DC
ISBN: 1560327030

When Parents Die: A Guide for Adults
By Edward Myers
Penguin
ISBN: 0140092110

Last Touch: Preparing for a Parent's Death
By Marilyn R. Becker
New Harbinger Publications, Inc.
ISBN: 1879237342

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Personal Stories

His Brother's Keeper: A Story from the Edge of Medicine
By Jonathan Weiner
HarperCollins Publishers
ISBN: 006001007X
Featuring ALS Therapy Development Foundation (ALSTDF) founder James Heywood and his brother Stephen, this book tells the story of three epic lines of research that are coming together through the eyes of Jamie, a young entrepreneur, who gambles on a new model of therapy development to save his brother Stephen's life. The story also profiles the Heywood family as they defiantly fight ALS.

When Bad Things Happen to Good People
Inspired by the death of his 14-year-old son and his family shared ordeal, Rabbi Kushner tells how to deal spiritually with an unfair loss or tragedy.
By Harold S. Kushner
Avon Books
ISBN: 038067033X

It's Hard to Leave While the Music's Playing
By I.S. Cooper
W.W. Norton & Co.
New York, NY.
Out of Print

Charlie's Victory
By Charlie & Lucy Wedemeyer with Gregg Lewis
This is an autobiography of Charlie Wedemeyer, a former high school football coach and father of two who has ALS. Charlie's story has been made into two television movies, One More Season and Quiet Victory.
Zondervan Publishing House
Grand Rapids, MI 49530
Out of Print

When the Music Stopped I Kept on Dancing
By Angela Riggs
Written by a young woman about how she dealt with her ALS, managed her life and the art of living for the sake of life itself.
BookPartners, Inc.
P.O. Box 922
Wilsonville, OR 97070
(800) 895-7323

Tuesdays With Morrie
By Mitchell Albom
Story about Morrie Schwartz, professor at Brandeis University who died of ALS in 1995. Mitch was his student and visited him many times before his death and together they wrote this tender book.
Bantam Doubleday Dell Publishing Group, Inc.
1540 Broadway
New York, NY 10036
ISBN: 0385484518

Letting Go: Morrie's Reflections on Living While Dying
By Morrie Schwartz
Doubleday & Company, Incorporated
ISBN: 0385318790

Journeys With ALS
By David Feigenbaum
In this book you will find 33 journeys about people living with ALS. 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.
DLRC Press
P.O. Box 1061
Virginia Beach, VA 23451
(800) 776-0560
 lynn@davidlawrence.com 

Personal Injuries
By Scott Turow
This novel is about a successful personal injury attorney who is discovered by a federal prosecutor to be involved in bribing judges. The twist to this book is that the protagonist's wife is a person with ALS.
Farrar Straus & Giroux
ISBN: 0374281947

How Will They Know If I'm Dead?
By Robert C. Horn, III
GR/St. Lucie Press
2000 Corporate Blvd., N.W.
Boca Raton, FL 33431
ISNB: 1574440713

On Any Given Day
By Joe Martin and Ross Yockey
ISBN: 0895872331

Learning to Fall: The Blessings of an Imperfect Life
By Philip E. Simmons, Ph.D.
Read an excerpt at  www.learningtofall.com 
Xlibris:  www.xlibris.com  or by phone 888-795-4274 (during business hours, Eastern time)
In Learning to Fall, Lake Forest English Professor Philip Simmons tells the story of his spiritual journey, which began when he was diagnosed with the fatal Lou Gehrig's disease at age 35. With wisdom and humor, he finds answers to life's deepest questions and shows us how, against all odds, to live lives of depth, compassion and courage.
ISBN: 073884022

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Books for and about Children

In My Dreams...I Do!
By Linda Saran
Inspired by the author's mother who continued to nurture an intimate relationship with her grandchildren despite her battle with Lou Gehrig's disease - an incurable, progressive motor neuron illness. Share the bonding experience of reading about two sisters who escape the world of their grandmother's physical limitations to the freedom of her dream realm where anything is possible. Together, the girls explore a place where bodies are limited only by mind. This narrative gives testimony to the magical power of the imagination - a secret that most children instinctively possess...and many adults. It has universal appeal to all navigating the road of life together.
ISBN: 0-9672082-0-3
Available through the   Les Turner ALS Foundation  for $12.95

Lou Gehrig: The Luckiest Man
By David A. Adler
ISBN: 0152005234
Mr. Adler is the award-winning author of more than one hundred books for children. This beautifully illustrated book by Terry Widner depicts the life and legend of Lou Gehrig. For children of all ages

Grandpa, What is ALS?
ALS Society of Alberta
400, 320-23 Avenue S.W.
Calgary, AB T2S 0J2 Canada
(403) 228-7752

Raising an Emotionally Healthy Child When a Parent is Sick
By Paula K. Rauch, M.D. and Anna C. Muriel, M.D., M.P.H.
McGraw-Hill
ISBN:0071446818

When Someone Has a Very Serious Illness: Children Can Learn to Cope with Loss and Change
by Marge Heegaard
Woodland Press
99 Woodland Circle
Minneapolis, MN 55424
(612) 926-2665
ISBN:0962050242

When Someone Very Special Dies: Children Can Learn to Cope with Grief
by Marge Heegaard
Woodland Press
99 Woodland Circle
Minneapolis, MN 55424
(612) 926-2665
ISBN:0962050202

Saying Goodbye: Bereavement Activity Book
By Jim & Joan Boulden
Boulden Publishing
P.O. Box 9249
Santa Rosa, CA 95405
(800) 238-8433
ISBN: 1878076124

Talking About Death: A Dialogue Between Parent and Child
By Earl A. Grollman
Beacon Press, Boston
ISBN: 0807023736

Teenagers Face to Face with Bereavement
By Karen Gravelle & Charles Haskins
Julian Messner Press
ISBN: 0671659758
Out of Print

How to Help Children Through a Parent's Serious Illness
By Kathleen McCue
St. Martin's Press, New York
ISBN: 0312113501

The Grieving Child: A Parent's Guide
By Helen Fitzgerald
Simon and Schuster, New York
ISBN: 0671767623

Straight Talk About Death for Teenagers
By Earl A. Grollman
Beacon Press, Boston
ISBN: 0807025003

Lifetimes
By Bryan Mellonie and Ropbert Ingpen
Excellent book about the life cycle for younger children.
Bantam Books, New York
ISBN: 0553344021

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Bereavement

Don't Take My Grief Away From Me
By Doug Manning
Harper San Francisco

How To Go On Living When Someone You Love Dies
By Therese A. Rando, Ph.D.
Bantam Books
ISBN: 0553352695

How It Feels When A Parent Dies
By Jill Krementz
Alfred A. Knopf, New York
ISBN: 0394758544

What Helped Me When My Loved One Died
By Earl A. Grollman
Covers specific feelings and coping skills for the death of a child, spouse and parent.
Beacon Press, Boston
ISBN: 0807032298
Out of Print

The Grief Recovery Handbook
By John W. James and Russell Friedman
Harper and Row
ISBN: 0060915862

When Your Spouse Dies
By Cathleen L. Curry
This book deals with a variety of practical concerns for those who have lost their mates to death, including stages of grief for adults and children, mourning, loneliness, sexuality, networks of support, financial priorities and planning, good health practices, and healing.
Ave Maria Press
ISBN: 0877934169

The Courage To Grieve
By Judy Tatelbaum
Harper and Row, New York
ISBN: 0060977859

A Grief Observed
By C.C. Lewis
A more religious account of rediscovered faith.
Bantam Books, New York
ISBN: 0583274864

Living When a Loved One Has Died
By Earl A. Grollman
Very poignant poems and brief thoughts, easy to read.
Beacon Press, Boston
ISBN: 0807027154

The Grieving Time
By Anne M. Brooks
A spouse's personal account of the first year after her husband's death. Written in brief sections, and talks about loneliness, depth of grief, etc.
Harmony Books, New York
ISBN: 0517572222

Grief Expressed When A Mate Dies
By Marta Felber
Personal expressions, experiences and suggestions with space for one's own thoughts and feelings as well. "Workbook" format for journaling.
LifeWords, West Fork, AK
ISBN: 0965396746

The Journey Through Grief
By Alan D. Wolfeld, Ph.D.
Companion Press, Fort Collins, CO
ISBN: 1879651114

Understanding Grief: Helping Yourself Heal
By Alan D. Wolfeld, Ph.D.
Readers are asked specific questions about their grief journeys and encouraged to think about and write down their responses.
Companion Press, Fort Collins, CO
ISBN: 1559590386

Healing Your Grieving Heart: 100 Practical Ideas
By Alan D. Wolfeld, Ph.D.
Companion Press, Fort Collins, CO
ISBN: 1879651122

A Guide to Understanding Guilt During Bereavement
By Robert Baugher
Caring Peo
ISBN: 0963597515

Life After Loss: A Personal Guide Dealing with Death, Divorce, Job Change and Relocation
By Bob Deits
Fisher Books
ISBN: 1555611893

The Eyes Are Sunlight: A Journey Through Grief
By Shirley Koers
Walker and Company
ISBN: 0802725864

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Video Tapes

Ventilation: The Decision Making Process
A 20-minute video designed for ALS patients, their family members and health professionals. It includes interviews with three ventilator dependent ALS patients, family members and the medical staff from the Lois Insolia ALS Center at Northwestern University Medical School.
 Available through the Les Turner ALS Foundation. 

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Cookbooks for ALS Patients

The Dysphagia Cookbook: Great Tasting and Nutritious Recipes for People with Swallowing Difficulties
By Elaine Achilles, Ed.D.
Cumberland House Publishing
431 Harding Industrial Drive
Nashville, TN 37211
ISBN: 1581823487

Meals for Easy Swallowing
Includes a collection of recipes, swallowing tips, helpful hints for increasing calories and sample menus developed by ALS patients and their families.
ALS Clinic
6501 Fannin, Room B 310
Houston, TX 77030

Non-Chew Cookbook
By J. Randy Wilson
Out of Print

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