Managing ALS Manuals
ALS Manual I: Finding Help
A realistic introduction for people with ALS and their family members. Emphasizes the importance of reliable, current information about the disease. Includes recommendations of available agencies and health care services that provide guidance and/or assistance.
ALS Manual II: Managing Muscle Weakness
Focuses on the difficulties in walking and full muscle use of people with ALS. Includes information about exercise, assistive devices, canes and walkers, wheelchairs and lifters and recovery from falls.
ALS Manual III: Managing Breathing Problems
Covers the importance of preventative measures needed to maintain optimal lung capacity. Discusses direct breathing aids when breathing muscles weaken.
ALS Manual IV: Managing Swallowing Problems
Suggests types of food and proper body alignment to help alleviate swallowing difficulties. Discusses alternative methods of eating and nutrition as swallowing difficulties progress.
ALS Manual V: Solving Communication Problems
Discusses ways for ALS patients to prolong speaking ability through such methods as slower articulation and palate lift. Augmentative communication techniques are detailed, including eye movement, communication boards and special computer programs.
How to Order ALS Manuals
The ALS Association
21021 Ventura Blvd., Suite 321
Woodland Hills, CA 91364
Tel: 818.340.7500 or 800.782.4747
Suggested Readings
General Guide
Amyotrophic Lateral Sclerosis: A Comprehensive Guide to Management
Edited by: Hiroshi Mitsumoto, MD and Forbes H. Norris, Jr, MD
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)
Coping
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.
It Helps to Talk About It: Living, Not Dying, with Lou Gehrig’s Disease -
By Bob MacLean
The ALS Association, 21021 Ventura Blvd., Suite 321, Woodland Hills, CA 91364; (800) 782-4747; $18.00 (oversize paper).
Beyond Rage: Mastering Unavoidable Health Changes
By JoAnn LeMaistre, PhD
Alpine Guild, P.O. Box 4846, Dillon, CO 80435; 800.869.9559
$24.95 plus $2.50 shipping and handling
ISBN 0931712114
We Are Not Alone: Learning to Live with Chronic Illness
By Sefra Korbin Pitzele
Workman Publishing, 708 Broadway, New York, NY 10013; 212.354.5900
$10.95 plus $3.00 shipping and handling
ISBN 08948801392
Meeting the Challenge: Living with Chronic Illness
By Audrey Kron
7466 Pebble Lane, West Bloomfield, MI 48322
$16.00* plus $3.00 shipping and handling. *$2.00 of each book sale is donated to ALSA
Living Well with Chronic Illness
By Gayle Heiss
Gayle Heiss, P.O. Box 210, Mendocino, CA 95460
$2.00 plus $0.60 shipping and handling
In Sunshine And In Shadow
Edited by Judy Oliver
(Out of Print) Available for loan through the ALS Association:
21021 Ventura Blvd., Suite 321, Woodland Hills, CA 91364; 818.340.7500 or
800.782.4747; $3.00 shipping and handling
Help Yourself
By Douglas R. Buey
MacMillan Publishing, 1633 Broadway, New York, NY 10019-6785; 212.654.8500
$14.95 (paperback) plus shipping and handling; ISBN 0028610598
How Will They Know if I’m Dead?
By Robert C. Horn, III
GR/St. Lucie Press, 100 East Lincoln Blvd., Suite 403B, Delray Beach, FL 33483
561.274.9906; $12.95 (paperback) plus $4.95 shipping and handling
ISBN 157440713
Communications/Swallowing Resources
Communication and Swallowing Solutions for the ALS/MND Community
By Marta S. Kazandjian
CINI, 250 Mercer St., Suite B1608, New York, NY 10012; 516).874.8354
$7.95 (paperback) plus $1.50 shipping and handling
ISBN 1565938089
Non-Chew Cookbook
By J. Randy Wilson
Wilson Publishing, Inc., P.O. Box 2190, Glenwood Springs, CO 81602-2190
800.843.2409
$23.95 (1 to 9 books); $16.77 (10 or more books - 30% discount). Postage paid.
Meals for Easy Swallowing
By Vicki Appel, Sandy Calvin, Gena Smith, Donna Wolhr
Muscular Dystrophy Association, Attention: Patient Services,
3561 E. Sunrise Dr., Tucson, AZ 85718; 520.529.2080; Free
Pot Holders and Love Handles
By Lynda Cabela
Cabela’s Furniture Store, 602 Second St., Cappell, NE 69129
$5.00 plus $1.25 shipping and handling
Caregiver Resources
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.
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
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
Home Health Care
Home Health Care
By JoAnn Friedman
W.W. Norton & Co. Ltd., 550 Fifth Ave., New York, NY 10010
$22.50 plus postage
Other Suggested Readings
Avoiding the Medicaid Trap: How Every American Can Beat the Catastrophic Costs of Health Care
By Armond D. Budish
Avon Books, 1350 Avenue of the Americas, New York, NY 10019
800.238.0658
$15.00 (paperback) plus shipping and handling
ISBN 0380727714
Handbook of Living Wills (free living will available)
Choice in Dying, Inc., 200 Varick St., New York, NY 10014; (800) 989-9455
Videotapes
What is ALS?
The ALS Association, 21021 Ventura Blvd., #321, Woodland Hills, CA 91364
8183407500 or 800.782.4747
Purchase: $15 (includes shipping and handling)
Loan for 2 weeks: $5.00 (shipping and handling)
~ An educational video presenting information about ALS.
Reason for Hope
The ALS Association, 21021 Ventura Blvd., #321, Woodland Hills, CA 91364
818.340.7500 or 800.782.4747
Purchase: $19.95 (includes shipping and handling)
Loan for 2 weeks: $5.00 (shipping and handling)
~ An educational video about ALS and the ALS Association for someone new to ALS.
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.
Ventilation: The Decision Making Process
By the Les Turner ALS Foundation
The ALS Association, 21021 Ventura Blvd., #321, Woodland Hills, CA 91364
818.340.7500 or 800.782.4747; Loan for 2 weeks: $5.00 (shipping and handling)
~ An educational video about ALS and the ALS Association for someone new to ALS.
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.
The Cutting Edge Medical Report
Discovery Channel, June, 1996
The ALS Association, 21021 Ventura Blvd., #321, Woodland Hills, CA 91364
818.40.7500 or 800.782.4747
Loan for 2 weeks: $5.00 (shipping and handling)
~ An educational video about ALS including a visit to an ALSA Center geared to healthcare professionals.