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The Amyotrophic Lateral Sclerosis Association offers a variety of publications that can help caregivers and patients with ALS:
• Basic Home Care for ALS Patients, revised in 1997.
• Swallowing Problems: A Caregiver’s Manual, published by Menu Magic in cooperation with the American Speech and Hearing Association; 1991.
• Maintaining Good Nutrition with ALS, a guide for families produced by the ALS Association.
• Living with ALS Manuals — Volumes 1-6. Topics include an overview, coping with change, managing symptoms, mobility, swallowing and speaking difficulties, and adapting to breathing changes; 1997.
For patients, immediate families, and health care professionals, there is no charge for many of those publications or for shipping and handling. The association also maintains a library of fact sheets about various aspects of managing ALS. Single copies are available at no cost to patients, families, caregivers, and health professionals.
The following videotapes about living with ALS are available at a cost of up to $20, plus shipping and handling; some also are available for $5 plus shipping and handling for a two-week loan from the association:
• "What is ALS?" and "Reason for Hope," which are overviews of the disease.
• "It’s Your Choice" and "Ventilation: The Decision Making Process," which are about the decision to use a ventilator.
For more information about any of those resources, write to the ALS Association, 21021 Ventura Blvd., No. 321, Woodland Hills, CA 91364. Phone: (818) 880-9007. Patients can call the Information and Referral Service Line at (800) 782-4747. Fax: (818) 880-9006. E-mail: miriam@ alsa-national. org. Web site: www.alsa.org.