published 1997

Resources

This resource list contains addresses, phone numbers and Internet addresses of many of the best sources of information on caregiving and ALS. Most of these resources offer resource lists of their own. Books, newsletters and support groups are all great ways to get the information you need. And, of course, you can get a lot of information from your local MDA office.

About the Internet

One of the best ways to stay informed about ALS, and to keep in touch with other people who are dealing with the disease, is through the Internet. If you aren't yet connected, now is a great time to get started. Once you've learned how to use a few basic tools, you'll be surprised how easy it is to search for information, send and receive e-mail, or join a discussion group.

Getting Started

All you need to get connected is a computer, a modem (which links your computer and your phone) and an Internet provider. You can find information about Internet providers in the yellow pages, under "Internet" or "Computers--bulletin board and online services." You can access MDA's Web site at www.mda.org.

— Resources for All Aspects of ALS —

Muscular Dystrophy Association

  3300 E. Sunrise Drive
  Tucson, AZ 85718
  (800) 572-1717
  www.mda.org

Click here to locate the MDA office nearest you.

The ALS Newsletter
Published 6-10 times per year by MDA, this newsletter features timely and authoritative articles on ALS research and information for people with the disease and their caregivers. This publication is free to all those registered with MDA. Call your local MDA office to register. Back issues are also available.

Quest
Published six times a year, this national magazine features articles, helpful information and product advertisements dealing with many aspects of living with neuromuscular diseases, including ALS. Free to those registered with MDA. Back issues available.

Booklets available from MDA:

ALS: Maintaining Mobility
ALS: Meals for Easy Swallowing
Facts About ALS
101 Hints to "Help-With-Ease" for Patients with Neuromuscular Disease

"ALS -- A Guide for Patients," by D. Eric Livingston, M.D., 16 pages. The late Dr. Livingston, who had ALS, drew up this helpful guide, which covers many topics, including practical tips, positive attitude and end-of-life issues. Available online at www.phoenix.net/~jacobson/pages/guide1.html.

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Amyotrophic Lateral Sclerosis: A Comprehensive Guide to Management, 2^nd edition
by Hiroshi Mitsumoto, M.D.,
and Theodore Munsat, M.D., Editors

Demos Medical Publishing Inc.
386 Park Ave. South
Suite 201
New York, NY 10016
(212) 683-0072/Fax: (212) 683-0118

A new book covering all aspects of ALS treatment. Available from the publisher or from medical bookstores.

ALS Advocacy
  pages.prodigy.com/ALSPROD
A personal Web page collecting news about ALS.

The ALS Digest
  http1.brunel.ac.uk:8080/~hssrsdn/alsig/current.txt
A good source for news about ALS, and a place to ask questions. Visit this site to see the Digest, then subscribe for free to this regular e-mail report. To subscribe, address e-mail to: bro@huey.met.fsu.edu (Bob Broedel).

ALS Resource Page
  www.phoenix.net/~jacobson/beatals.html
Doug Jacobson, who has ALS, offers ideas from and connections to many sources of ALS information. This site includes issues of the ALS Digest.

AMELA: Asociacion Madrilena de Esclerosis Lateral Amiotrofica
  www.servicom.es/amela/0_AMELA.HTM
An ALS site in Spanish.

America Online ALS Bulletin Board

Main Menu ==> Clubs & Interests ==> disABILITIES ==> disABILITIES message Center ==> General Discussions ==> List Topics ==> ALS (Lou Gehrig's Disease)

The Baylor College of Medicine MDA/ALS Center

Department of Neurology
6501 Fannin St., NB302
Houston, TX 77030
www.bcm.tmc.edu/neurol/struct/als/als1.html
One of the leading ALS clinics in the country. Booklets on issues in ALS -- meals, maintaining mobility (both also available from MDA), neck weakness and nutrition -- are available for a nominal cost or for free by request.

Doctor's Guide to ALS
  www.pslgroup.com/ALS.HTM
This site contains recent news announcements about ALS, as well as some links to other resources.

Prodigy ALS Bulletin Board
 Jump Medical support BB, subject: neurological, topic: A.L.S.

— Resources for Caregivers —

Most of the books recommended here are available at local libraries or bookstores or can be ordered through them or via the Internet.

For Better or for Worse: A Couple's Guide to Dealing with Chronic Illness,
by Beverly Kievman with Susie Blackmun, 312 pages, $17.95. Contemporary Books (1989).

Kievman, whose husband grew increasingly disabled with diabetes, writes about the struggle to maintain her own career and interests while providing the care and attention her husband needed.

Help Yourself: Problem Solving for the Disabled

by Douglas R. Bucy, 176 pages, $14.95. Macmillan (1996). The author wrote about his experience of living with ALS. The book covers the roles of the primary caregiver and professional caregivers. The section on independent living has detailed information about and drawings of home modifications and daily living aids, plus extensive lists of sources of equipment and supplies. Psychological adjustment and financial issues are also addressed.

Helping Yourself Help Others, a Book for Caregivers,
by Rosalynn Carter with Susan K. Golant, 278 pages, $14.
Times Books (1996). The former first lady recounts her experiences of helping care for her father, grandparents and her husband's family. The text is filled with helpful suggestions for individuals and organizations, as well as words of comfort and support. Chapters cover preparing yourself, emotional dilemmas, family harmony, isolation, burnout and dealing with professionals.

Helpmates: Support in Times of Critical Illness, by Harry A. Cole, 157 pages, $10.99. Westminster/John Knox Press (1991). Call (800) 227-2872. Cole is a professor of history and philosophy who cared for his wife after she had a stroke. His book focuses on ways of meeting the emotional and spiritual challenges facing the caregiving spouse.

Inspirations for Caregivers, edited by Caryn Summers, R.N., 278 pages, $8.95,
Commune-a-Key Publishing (1993). This small book contains dozens of quotations designed to give caregivers inspiration, laughter and understanding. A cassette tape version, with music by Douglas York, is also available for $10.95.
Order from:
  Commune-a-Key Publishing
  P.O. Box 507
  Mt. Shasta, CA 96067

Mainstay: For the Well Spouse of the Chronically Ill, by Maggie Strong, 330 pages, $9.95. Penguin (1988).
This is the first well-known account of caregiving, written by the founder of the Well Spouse Foundation. Strong, whose husband has multiple sclerosis, writes candidly about the drastic emotional, financial and physical changes in every aspect of life for a family affected by a serious illness.

Nursing Procedures, 2nd edition, by Kathy Goldberg, editor, 784 pages, $44.95. Springhouse Corp. (1996).
Call (800) 666-5597.
Contains how-to instructions and illustrations on safety, transfer, hygiene, nutrition and other issues. Available in larger bookstores.

The Resourceful Caregiver: Helping Family Caregivers Help Themselves, by the National Family Caregivers Association, 144 pages, $12.95. Mosby Lifeline (1996). Call (800) 325-4177. An exhaustive listing of every kind of resource needed to face the challenges of caregiving. Emphasizing the importance of getting help and caring for yourself, the book is an indispensable aid to the family or professional caregiver. Resources listed include organizations, respite services, databases, hotlines, educational materials and home shopping catalogs.

Access to Respite Care and Help (ARCH) National Resource Center
  Chapel Hill Training-Outreach Project
  800 Eastowne Drive
  Suite 105
  Chapel Hill, NC 27514
  (800) 773-5433
  chtop.com/locator.htm
ARCH offers information on respite programs throughout the United States. You can call for information, or search the database at the Web site.

Adult Children of Aging Parents
  P.O. Box 9889
  Birmingham, AL 35220-0889
  (800) 750-2199
  www.service.com/answers/cover.html
This organization publishes Answers, the magazine for adult children of aging parents, which covers caregiving topics.

American Association of Retired Persons
  (800) 424-3410
  www.aarp.org
Try "caregiving" in the index or search options for topics such as assistive devices, caregiving support, financial matters and care options. AARP services are geared toward anyone age 50 or older, and information may be of use to all.

Caregiving Newsletter
  (847) 823-0639
  www.caregiving.com
From Wellness for Caregivers of an Aging Relative, Friend or Neighbor.

The Catalog Handbook
  www.w2.com/cataloghandbook.html
Lists more than 5,000 catalogs offering products by mail order.

Double Check Inc.
  www.erinet.com/dbleck/
  (800) 480-4359
Started by a nurse who became a family caregiver, this service helps caregivers anywhere in the United States find professional help. Especially helpful for long-distance caregivers.

Family Caregiver Alliance
  425 Bush St.
  Suite 500
  San Francisco, CA 94108
  (415) 434-3388/(800) 445-8106 (CA only)
  www.caregiver.org
Focuses on caregiving for people with brain and neurological problems. Fact sheets and newsletter cover caregiving tips, juggling work and family, and other relevant topics.

Government publications
  www.pueblo.gsa.gov
Choose "Search CIC" to search for government publications on caregiving. Choose "Health" or "Miscellaneous" for related material.

National Association for Home Care
  228 Seventh St. SE
  Washington, DC 20003
  (202) 547-7424
  www.nahc.org
This is a professional association for caregivers and caregiver organizations. The Internet site contains the Home Care and Hospice Locator, and information on how to choose a home health-care agency.

National Family Caregivers Association
  9621 E. Bexhill Drive
  Kensington, MD 20895-3104
  (301) 942-6430/(800) 896-3650
  Fax: (301) 942-2302
  www.nfcacares.org
Has extensive information on caregiving topics and member organizations.

SWT Age Page
  elo.mediasrv.swt.edu/goldenage/script.htm
A resource from Golden Age for people seeking information about the elderly and their caregivers.

Today's Caregiver Magazine   P.O. Box 800616
  Miami, FL 33180-8616
  www.caregiver.com
Subscription information to Today's Caregiver magazine. Helps caregivers work with health-care professionals, plan for long-term care and deal with specific problems.

Visiting Nurses Associations of America
  (800) 426-2547
Call to find a VNA chapter in your area.

The Well Spouse Foundation
  P.O. Box 801
  New York, NY 10023
  (212) 644-1241 (Voice)
  (800) 838-0879 (message only)
A nonprofit group formed to provide support and advocacy for the spouses and children of the chronically ill.

— Books by and About People With ALS —

How Will They Know If I'm Dead? Transcending Disability and Terminal Illness, by Robert C. Horn III, with preface by C. Everett Koop, M.D., 120 pages, $12.95. St. Lucie Press (1996). A former political science professor and an authority on the Soviet Union, Horn describes his eight-year struggle with ALS, and how his family coped. The book, which Horn wrote by operating his computer with his foot, recounts how he found life with ALS worth living. To order, contact the publisher at:
  100 E. Linton Blvd., Suite 403B
  Delray Beach, FL 33483
  (561) 271-9906
  www.slpress.com

It Helps to Talk About It: Living, Not Dying, With ALS, by Bob MacLean. The Talk Helps ALS Research Trust (1994). A personal account by a man with ALS. MacLean stresses the importance of talking, hoping, crying and laughing. Available on loan through local MDA offices.

Six Parts Love: One Family's Battle With Lou Gehrig's Disease, by Roni Rabin. Charles Scribner's Sons (1985). A daughter's account of her father's life with ALS. The warmth and strength of the man and his family make this an inspiring story. Out of print; check larger libraries.

— Respiratory Care —

International Ventilator Users Network News
A newsletter discussing issues and new ideas in ventilator use. Subscription is $12/year. Published by:
  Gazette International Networking Institute
  4207 Lindell Blvd. #110
  St. Louis, MO 63108-2915
  Phone: (314) 534-0475
  Fax: (314) 534-5070

Pulmonary Rehabilitation: The Obstructive and Paralytic Conditions, edited by John R. Bach, M.D., $69.95. Hanley & Belfus. To order, call (800) 962-1892, or try a medical library.

— Technology: Augmentative and Alternative Communication —

Communication and Swallowing Solutions for the ALS/MND Community: a CINI Manual, by Marta S. Kazandjian, $39.95. Singular Publishing Group (1997).
  401 West A St.
  Suite 325
  San Diego, CA 92101-7904
  (800) 521-8545
  www.singpub.com
Written by the professionals of Communication Independence for the Neurologically Impaired. This manual provides the many options available to solve communication and swallowing problems as they arise and illustrates how these solutions can be used to support and resolve patients' needs.

Computer Resources for People with Disabilities. The Alliance for Technology Access. Hunter House (1996). Call (800) 266-5592. A comprehensive guide for determining your needs and finding the right equipment. This book is a good first stop if you're exploring assistive technology.

Abledata
Abledata is a source of information on assistive technology sponsored by the Department of Education. The entire database is available for searching on the Web site. If you have questions or you need assistance, you can call Abledata at (800) 227-0216 or (301) 588-9284 and speak with an information specialist who can perform a database search for you. Written requests may be mailed to:
  Abledata
  8455 Colesville Road
  Suite 935
  Silver Spring, MD 20910
  Fax: (301) 587-1967
  www.abledata.com

Communication Outlook
  National Institute for Rehabilitation Engineering
  Artificial Science Department
  97 Decker Road
  Michigan State University
  East Lansing, MI 48824-1042

National Rehabilitation Information Center
  8455 Colesville Road
  Suite 935
  Silver Spring, MD 20910
  (800) 346-2742 /Fax: (301) 587-1957
  www.naric.com/naric
A resource that touches on products and home modifications, gives results of federal research, and lists other helpful programs and newsletters related to living with disabilities. There's a charge for some services.

RESNA (Rehabilitation Engineering Society of North America)
  1700 N. Moore St., #1540
  Arlington, VA 22209-1903
  (703) 524-6686
  www.resna.org
An association that supports rehabilitation technology research to benefit people with disabilities.

The Trace Center
  www.trace.wisc.edu
A good introduction to technological devices that can help people with ALS communicate and use computers.

Web Pages
  www.asel.udel.edu/at-online/technology/aac/
This is a link page for information on technology designed to aid communication.
  www.tezcat.com/~jmp/SpeakEasy/alslinks.html
This page includes good communication device links.
  http1.brunel.ac.uk:8080/~hssrsdn/alsig/communic.htm
This page from the ALS Digest archives has information about communication devices.

— Drug Information —

Amgen
  (800) 77-AMGEN
Amgen is developing GDNF and other drugs for treating ALS. You can get information about their clinical trials at this number.

Cephalon
 (800) 896-5855
Cephalon makes Myotrophin, one of the drugs currently being tested for treatment of ALS.

National Organization for Rare Disorders (NORD)
  P.O. Box 8923
  Fairfield, CT 06812-8923
  Phone: (203) 746-6518, (800) 999-6673
  Fax: (203) 746-6481
  www.pcnet.com/~orphan/
NORD's Medication Assistance Program helps distribute drugs, including Rilutek, to low-income patients.

Rhone-Polenc Rorer
  (800) 790-RTEC
RPR manufactures Rilutek, the first drug approved by the FDA for ALS treatment. Information is available at this number about getting Rilutek at wholesale.

— Other Sources of Information —

Neurology Webforum
  132.183.145.103/neurowebforum/NeuromuscularMenu.html
Sponsored by the Massachusetts General Hospital Department of Neurology. A good place to ask questions and listen in on discussions about ALS.

Neurosciences on the Internet
  www.lm.com/~nab
This site is a jumping-off point for all types of references through the Internet.

— Used Medical Equipment —

MDA
Many local MDA offices have some used durable medical equipment for loaning out. They can also help you locate other local sources and funding options.

Med-Sell
  10556 Combie Road
  #6219
  Auburn, CA 95602
  (916) 268-8847 /Fax: (916) 268-8414
  www.nccn.net/~medsell/
Classified ads for hundreds of items of used medical equipment in dozens of categories. Most of the advertised equipment is on the West Coast, but the service is expanding eastward.

— Financial, Legal and Medical Resources —

Choices In Dying
  200 Varick St.
  New York, NY 10014
  (212) 366-5540 /Fax (212) 366-5337
  www.choices.org
Choices In Dying offers advice about making medical care decisions, and offers state-by-state legal forms for advance directives, including durable powers of attorney. You may download these for free by computer, or order by mail for a small fee.

Fact Sheet on Durable Powers of Attorney
www.caregiver.org/fs/fs_dpa.html
This fact sheet answers many of the questions you may have about durable powers of attorney and living trusts.

National Academy of Elder Law Attorneys
  1604 N. Country Club Road
  Tucson, AZ 85716
  (520) 881-4005
This organization can provide information on living wills and durable powers of attorney, among other legal issues.

National Hospice Organization
  1901 N. Moore St.
  Suite 901
  Arlington, VA 22209
  (800) 658-8898
  www.nho.org
A nonprofit organization of hospices, professionals and volunteers. Has database of hospices by state.

Office of Disability Online
  www.ssa.gov/odhome/odhome.htm
Find out what benefits and programs are offered by Social Security to people with chronic illness and disabilities.

Social Security Office
  (800) 772-1213
  Social Security Online
  www.ssa.gov/SSA_Home.html
This number can be used to get answers to questions about Social Security, disability benefits and Medicare.

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