Hi olga3,
First let me express how sorry I am for your friend. Second please
read the disclaimer -
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any opinion expressed in answers or comments.
With that said,I took a personal interest in your question because my
father was diagnosed with ALS when he was 74. In order to be
correctly diagnosed he went to several major medical facilites for a
myriad of testing. It's a terrible disease.
He was a Urologist, and another doctor he knew also had ALS and was
involved in a Clinical Trial going on in Boston (this was back in the
1980's) and he paid to entire the double blind study. At the end of
the trials nothing was approved by the USDA, but I heard further
studies had been conducted in Canada to further the research which had
been slightly promising.
=======================================
There is so much available in the way of personal stories and
information about Lou Gehrig's Disease... I do hope I won't overwhelm
you with what I found.
Please browse the following and I'm sure you'll find much that will
help you and your friend:
In South Texas: The Amyotrophic Lateral Sclerosis Association (ALSA)
http://www.alsa-south-tx.org/
For clinic information call 210-567-1945
"The Amyotrophic Lateral Sclerosis Association (ALSA) is a non-profit
organization dedicated to finding the cause and cure of ALS. The
South Texas Chapter.....
[edited]
The ALS Association-South Texas Chapter 877-ALS-HOPE EIN# 74-678974 -
To help South Texas families touched by Amyotrophic Lateral Sclerosis
(ALS-Lou Gehrig's Disease) by providing support, information,
education, advocacy, awareness and hope through research."
Contact link
http://www.alsa-south-tx.org/contact_us.htm
Subscribe to the newsletter
http://www.alsa-south-tx.org/newsletter.htm
=======================================
National Organization:
Les Turner Amyotrophic Lateral Sclerosis Foundation, Ltd
http://www.lesturnerals.org/resource.htm
email: info@lesturnerals.org
=======================================
ALS - Medical Institutions
http://www.lesturnerals.org/resource.htm#ALS%20-%20Medical%20Institutions
"The following web sites are listed as a service to the ALS community.
The Les Turner ALS Foundation does not endorse or recommend
information, products or services contained in these sites. You should
contact an appropriate medical professional before using any advice
given on this or any other linked site."
ALS - National/International Organizations
The ALS Association
http://www.alsa.org
American Academy of Neurology
http://www.aan.com
International Alliance of ALS/MND Associations
http://www.alsmndalliance.org
Muscular Dystrophy Association
http://www.als.mdausa.org
National Institute of Neurological Disorders and Stroke
http://www.ninds.nih.gov
National Organization for Rare Diseases (NORD)
http://rarediseases.org
World Federation of Neurology
http://www.wfnals.org
=======================================
ALS - Independent Organizations
The ALS Hope Foundation
http://www.alshopefoundation.org
ALS March of Faces
http://www.march-of-faces.org
ALS-PLS Research Foundation
http://www.als-pls.org
ALS Therapy Development Foundation
http://www.als-tdf.org
Dana Alliance for Brain Initiatives
http://www.dana.org/brainweb
Hope for ALS
http://www.hopeforals.com
Playing To Win For Life Foundation
http://www.playing2win4life.org
Project A.L.S.
http://www.projectals.org
Ride for Life
http://www.rideforlife.com
ALS - Medical Institutions
The Center for ALS Research at Johns Hopkins
http://www.neuro.jhmi.edu/alscenter
The Eleanor and Lou Gehrig MDA/ALS Center
http://www.columbiaals.org
Massachusetts General Hospital Day Laboratory for Neuromuscular
Research
http://www.massgeneral.org/als
The Neuromuscular and ALS Center at Robert Wood Johnson Hospital
http://www2.umdnj.edu/nmalsweb
ALS - Publications
ALS Digest
"This weekly email list serves the worldwide ALS community (4,500+
subscribers). Please be advised, the editor, Bob Broedel, is not a
medical doctor and the ALS Digest is not peer reviewed. To subscribe,
please send e-mail to the editor at bro@huey.met.fsu.edu"
ALS: A Beginners Manual
http://www.alscecilneth.net
ALS Radio Hour
http://www.voiceamerica.com
ALS Survival Guide
http://www.lougehrigsdisease.net
Clark Family ALS Initiative
http://www.docnzok.com/cff/index.htm
Learning to Fall
http://www.learningtofall.com
Papa Dave's Miracle Milers
http://www.alsmiraclemilers.org
Through Riley's Eyes
http://www.throughrileyseyes.com
=======================================
Communication Assistance
Asyst
http://www.communimate.com
Communication Independence for the Neurologically Impaired
http://www.cini.org
E-triloquist
http://www.etriloquist.com
Woodlake Technologies
http://www.woodlaketechnologies.com
=======================================
Pharmaceutical Companies
Aventis - ALS Info Web Site
http://www.alsinfo.com
Further information on clinical drug studies is available on the ALS
Association web site at http://www.alsa.org/research/drugdev.cfm
Other Sites of Interest
On Our Own Terms: Moyers on Dying
http://www.thirteen.org/onourownterms
=======================================
Recommended books:
Tuesdays With Morrie, by Mitch Album
When a Loved One has ALS: A Caregiver's Guide
by the Muscular Dystrophy Association
Amyotrophic Lateral Sclerosis : A Comprehensive Guide to Management
by Hiroshi Mitsumoto, Forbes H. Norris (Contributor)
Communication and Swallowing Solutions for the ALS/MND Community : A
Cini Manual
by Marta S. Kazandjian, Editor
Letting Go : Morrie's Reflections on Living While Dying
by Morrie Schwartz
On Death and Dying (A must read)
by Elisabeth, Md. Kubler-Ross
Walking on Central Boulevard
Lippert, Marion
Hardcover, 128 Pages, Blue-Note Press, November 1998
ISBN: 1878398105
A Mother’s Journey by Marion Lippert published by Blue Note Book @
1-800-624-0401 or sold at Barnes and Noble.
"This is a short book but worth reading for ANYONE who knows or has
someone with this disease. The book was written to help others and to
show traditional medicine as well as alternative procedures. What was
good and what did not work. Cari lived longer than her doctors had
stated and I hope this book will help someone."
=======================================
ALS Survival Guide - Offering hope to people with Amyotrophic Lateral
Sclerosis
http://www.lougehrigsdisease.net/als_resources.htm
=======================================
Some tools that might be helpful if your friend loses the ability to
speak:
http://www.etriloquist.com/index.html
http://march-of-faces.org/resources/vkt.html
=======================================
I used the following Google Search Terms:
"ALS" + support groups
"Lou Gehrigs"
"South Texas ALS support groups"
"Muscular Dystropy"
Plus my own personal experience with my Dad.
Best regards to you and your friend,
tlspiegel
Google Answers Researcher
P.S.
Possibly this was your other question?
http://answers.google.com/answers/main?cmd=threadview&id=60606 |
