Dear brentwill1-ga;
Thank you for allowing me an opportunity to answer your interesting
question. Having recently lost a dear friend to Lou Gehrig's disease I
sympathize with your situation. I will do my best to educate you about
this affliction and where necessary direct you to resources where you
can learn much more:
Lou Gehrig's disease, medically known as AMYOTROPHIC LATERAL
SCLEROSIS, is a progressive, and tragically fatal neurological disease
that affects roughly 20,000 Americans with 5,000 new cases occurring
in the United States each year. Much about the disease, like many
diseases for which we have yet to find a cure, remains a mystery. What
we do know about the disease is that specific nerve cells in the brain
and spinal cord that control voluntary movement gradually degenerate.
As they weaken and waste away, paralysis sets in. Initially perhaps a
patient might first exhibit symptoms like tripping or falling,
difficulty controlling the moments of the hands, arms or face muscles,
or difficulty speaking, swallowing or even breathing. Many patients
experience severe fatigue, twitching and cramping of the muscles.
Generally speaking, ALS is a disease that manifests itself at mid-life
or later. Men are about one-and-a-half times more likely to have the
disease as women. There are no real gender specific challenges to this
disease but that is certainly not to suggest that it is not a
difficult experience for a person of either gender. Unfortunately
there is no cure for ALS as of yet; nor is there a proven therapy that
will prevent or reverse the course of the disorder. Recently however,
the Food and Drug Administration (FDA) approved the drug ?riluzole?,
the first known drug that has been shown to PROLONG the survival of
ALS patients to some degree. As a rule, patients are made as
comfortable as possible and supportive therapies are given to assist
them in accommodating their physical symptoms.
There are a number of treatments for ALS that are designed primarily
to relieve symptoms and improve the quality of life for patients.
There are of course medicines that can help reduce fatigue, ease
muscle cramps, and control spasticity for example. Gentle, low-impact
aerobic exercise such as walking, swimming, and stationary bicycling
can help strengthen a patient?s unaffected muscles and help them fight
fatigue and depression. Eventually devices such as ramps, braces,
walkers, and wheelchairs can be implemented and play a huge role in
some patients? lives to help them conserve their energy and even to
remain mobile to some extent. Speech therapy for those who have
already lost some ability to speak is sometimes a good idea, and
perhaps even some advanced training in various preplanned
communication methods for the eventual moment when all speech is lost
might be another good idea. Planning ahead by developing an
understandable communication plan and practicing and preparing to use
one eye blink for ?yes? and two eye blinks for ?no?, for example, in
the event this type of communication becomes necessary. As awful as
this sounds now, it my become a valuable tool in the future and a
means by which you and your loved one can effectively continue to
communicate needs, pain, etc for some time longer following the almost
inevitable total incapacity that eventually ensues.
As I said earlier, the prognosis for this disease, according to the
National Institute of Neurological Disorders and Stroke, is grim. On
average, patients with Lou Gehrig?s disease succumb to the illness
within five years of diagnosis.
You can learn a great deal about this disease by reading this medical
fact sheet. I caution you though to prepare yourself before reading
this document as, I?m very sorry to say, it projects a rather bleak
outcome:
NATIONAL INSTITUTE OF NEUROLOGICAL DISORDERS AND STROKE
Amyotrophic Lateral Sclerosis Fact Sheet
http://www.ninds.nih.gov/health_and_medical/pubs/als.htm
NATIONAL INSTITUTE OF NEUROLOGICAL DISORDERS AND STROKE
How is ALS treated?
http://www.ninds.nih.gov/health_and_medical/pubs/als.htm#treatment
NATIONAL INSTITUTE OF NEUROLOGICAL DISORDERS AND STROKE
What research is being done?
http://www.ninds.nih.gov/health_and_medical/pubs/als.htm#research
On a more optimistic note, there are a number of studies currently
seeking participants in the hope that some treatments can be developed
and better understood. Each of the clinical trials are quite
complicated from a medical and scientific perspective and it simply
would not be fair to you for me to even attempt to explain them in the
space we have here and expect the same accuracy as the summaries
themselves. Suffice it to say that leading specialists in the field
conduct them and the most current technological means are being used
to determine the efficacy of these treatments. PLEASE NOTE that on
each study shown below, the contact information for the scientists,
physicians and researchers (called ?Principal Investigators?) who are
leaders in this research are listed on each study?s page.
There are several (mentioned below) but one of the most promising new
studies it seems is one which indicates that combining the supplement
?creatine? and the antibiotic ?minocycline? significantly slows
disease?s progression and prolongs survival in a mice with Lou
Gehrig's disease.
Minocycline Delays Onset and Slows Progression of ALS in Mice
http://www.ninds.nih.gov/news_and_events/news_article_als_minocycline.htm
If you are interested in participating in one or more of them, here is
the list of studies scheduled to be underway:
INDEX OF STUDIES:
CLINICAL TRIALS.GOV
http://clinicaltrials.gov/search/term=Amyotrophic%20Lateral%20Sclerosis
INDIVIDUAL CLINICAL TRIALS:
Study of Creatine Monohydrate in Patients with Amyotrophic Lateral Sclerosis
http://clinicaltrials.gov/ct/show/NCT00069186?order=1
Creatine for the Treatment of Amyotrophic Lateral Sclerosis
http://clinicaltrials.gov/ct/show/NCT00070993?order=2
Minocycline to Treat Amyotrophic Lateral Sclerosis
http://clinicaltrials.gov/ct/show/NCT00047723?order=3
IGF-1/ALS Trial
http://clinicaltrials.gov/ct/show/NCT00035815?order=4
ALS Veterans Registry
http://clinicaltrials.gov/ct/show/NCT00076154?order=5
Safety testing of AVP-923 in the Treatment of Emotional Lability
(Uncontrolled Laughter & Crying)
http://clinicaltrials.gov/ct/show/NCT00056524?order=6
Riluzole and Lithium to treat Depression in Bipolar Disorder
http://clinicaltrials.gov/ct/show/NCT00054704?order=7
I think you will find a great deal of information, support and perhaps
even comfort by contacting any or all of these organizations:
ALS Association (ALSA)
27001 Agoura Road
Suite 150
Calabasas Hills, CA 91301-5104
info@alsa-national.org
http://www.alsa.org
Tel: 818-880-9007 800-782-4747
Fax: 818-880-9006
Les Turner ALS Foundation
8142 North Lawndale Avenue
Skokie, IL 60076
info@lesturnerals.org
http://www.lesturnerals.org
Tel: 888-ALS-1107 847-679-3311
Fax: 847-679-9109
Muscular Dystrophy Association
3300 East Sunrise Drive
Tucson, AZ 85718-3208
mda@mdausa.org
http://www.mdausa.org/
Tel: 520-529-2000 800-572-1717
Fax: 520-529-5300
Project ALS
511 Avenue of the Americas
Suite #341
New York, NY 10011
projectals@aol.com
http://www.projectals.org
Tel: 212-969-0329 800-603-0270
Fax: 212-337-9915
Brain Resources and Information Network (BRAIN)
P.O. Box 5801
Bethesda, Maryland 20824
(800) 352-9424
http://www.ninds.nih.gov
Human Brain and Spinal Fluid Resource Center
Neurology Research (127A)
W. Los Angeles Healthcare Center
11301 Wilshire Blvd. Bldg. 212
Los Angeles, CA 90073
310-268-3536
24-hour pager: 310-636-5199
Email: RMNbbank@ucla.edu
http://www.loni.ucla.edu/~nnrsb/NNRSB
In addition, you may want to consult these support groups for
additional information and support during this difficult time:
The ALS Association
27001 Agoura Rd., Suite 150
Calabasas Hills, California, 91301-5104
Telephone: (818)880-9007 or 1-800-782-4747 (information and referral)
Fax: (818)880-9006
Email: alsinfo@alsa-national.org
http://www.alsa.org/
MED HELP
http://www.medhelp.org/HealthTopics/Lou_Gehrig's_Disease.html
(Articles, support, research and forums)
E Support Groups
http://www.esupportgroups.com/ALS.html
WHEN A LOVES ONE HAS ALS
?A CAREGIVER?S GUIDE?
http://www.mdausa.org/publications/alscare/index.html
(An extremely informative guide. Be sure to examine the associated links.)
Indeed, you and your family may have a long hard road ahead of you. I
wish you the very best in this situation. I hope you find that my
research exceeds your expectations. If you have any questions about my
research please post a clarification request prior to rating the
answer. Otherwise I welcome your rating and your final comments and I
look forward to working with you again in the near future. Thank you
for bringing your question to us.
Best regards;
Tutuzdad-ga ? Google Answers Researcher
INFORMATION SOURCES
NATIONAL INSTITUTE OF NEUROLOGICAL DISORDERS AND STROKE
Amyotrophic Lateral Sclerosis Information Page
http://www.ninds.nih.gov/health_and_medical/disorders/amyotrophiclateralsclerosis_doc.htm#What_is_Amyotrophic_Lateral_Sclerosis
NATIONAL INSTITUTE OF NEUROLOGICAL DISORDERS AND STROKE
Amyotrophic Lateral Sclerosis Fact Sheet
http://www.ninds.nih.gov/health_and_medical/pubs/als.htm
MED HELP
http://www.medhelp.org/HealthTopics/Lou_Gehrig's_Disease.html
E SUPPORT GROUPS
http://www.esupportgroups.com/ALS.html
WHEN A LOVES ONE HAS ALS
?A CAREGIVER?S GUIDE?
http://www.mdausa.org/publications/alscare/index.html
CLINICAL TRIALS.GOV
http://clinicaltrials.gov/search/term=Amyotrophic%20Lateral%20Sclerosis
SEARCH STRATEGY
SEARCH ENGINE USED:
Google ://www.google.com
SEARCH TERMS USED:
LOU GEHRIG'S DISEASE
SUPPORT
RESEARCH
TREATMENT
THERAPY
CURE
HOSPICE
ALS
AMYOTROPHIC LATERAL SCLEROSIS |
Clarification of Answer by
tutuzdad-ga
on
09 Jun 2004 14:54 PDT
That?s a very good question and undoubtedly one that only her
attending physician could accurately address. Not being physicians and
having no way to adequately diagnose your relative?s condition, it
would be fool-hardy for either of us to assume that the answer to your
question here should be taken in the literal sense as the final
medical ?say? on what should and should not be done considering the
patient?s condition and treatment. Furthermore, it often takes a
physician?s referral in order to participate in such a clinical trial
so ultimately she would have to consult her physician about the
suitability of the trials anyway.
You said that your relative is an 80-year-old female whom physicians
?think? has ALS. Before your relative can enter into a trial, she
would IN MOST BUT ALL NOT ALL TRIALS have to have a formal medical
diagnosis to that effect. Based on this, medical trials at this point
in time, with regard to some trials, are probably not an option. On
the other hand, there are some trials where probable diagnoses are
accepted. Assuming she will pursue a medical diagnosis and does indeed
receive one from her physician, some of the trials listed may be
suitable for her.
As I said before, our forum is not to be taken as medical advice, nor
logically should any anonymous Internet forum, however, in reviewing
the general requirements of the clinical trials I listed earlier,
there are three listed that probably WON?T be suitable for your
relative (an 80 year old female) and I will explain why:
ALS Veterans Registry
http://clinicaltrials.gov/ct/show/NCT00076154?order=5
(If she were not a veteran she would not qualify for this study)
Safety testing of AVP-923 in the Treatment of Emotional Lability
(Uncontrolled Laughter & Crying)
http://clinicaltrials.gov/ct/show/NCT00056524?order=6
(This study is limited to those between the ages of 21-75)
Riluzole and Lithium to treat Depression in Bipolar Disorder
http://clinicaltrials.gov/ct/show/NCT00054704?order=7
(She would only qualify for this study if she had been definitely
diagnosed with bipolar I or II disorder without psychosis ? which she
probably hasn?t.)
The other trials however might be more suitable, on the advice and
recommendation of her physician of course. Here are the general
requirements for other studies I mentioned:
AGES ELIGIBLE FOR STUDY: 21 YEARS - 80 YEARS
Some studies do appear to accept patients up to 85 years of age, but
if your relative enters a study soon enough she may be able to get
into the ones that have a cut-off at the maximum age of 80.
GENDERS ELIGIBLE FOR STUDY: BOTH
The studies all appear to be suitable for both malke and female
patients but by virtue of the fact that this is predominantly a male
malady, one might reasonably expect to be one of the few, if not only,
female participants. This should probably not be a concern however in
one?s consideration to participate in a medical study or not.
CRITERIA: (AMONG OTHERS) A CLINICAL DIAGNOSIS OF PROBABLE OR DEFINITE
LAB-SUPPORTED ALS
The remaining studies I listed all appear to accept patients who
diagnosis is not necessarily definitive. In other words, if her
physicians have told her that preliminary tests merely indicate a
PROBABLE diagnosis of ALS she should qualify for these trials.
I hope this additional information add significantly to what we have
already discussed and helps you to make some better informed
decisions. Again, I wish the best for you all during this difficult
time.
Regards;
Tutuzdad-ga
|
Clarification of Answer by
tutuzdad-ga
on
09 Jun 2004 17:54 PDT
There are currently 400 people participating in one long term human
study involving the use of minocycline (mentioned again below), which
also, as it turns out, is reported to be well tolerated in conjunction
with riluzole (Rilutek), the only currently approved medication for
ALS. This appears, for the moment at least, the only way to have
minocycline medically administered.
The coordinating center for this trial is the Eleanor and Lou Gehrig
MDA/ALS Center, Columbia University Medical Center, in New York, Paul
H. Gordon, M.D., principal investigator. For information about the
trial contact Nayra Gad, project coordinator, at (212) 305-1319,
ng152@columbia.edu or Carolyn Doorish, research assistant,(212)
305-2027, cd2141@columbia.edu.
In North Carolina you may contact one of these individuals affiliated
with this same study who will be more than happy to assist you and
answer your questions:
Bonnie Dryman
Site Coordinator
Wake Forest University
Winston-Salem, NC
Phone: (336) 716-2323
Email: bdryman@wfubmc.edu
Ruth King
Site Coordinator
Carolinas Medical Center
Charlotte, NC
Phone: (704) 355-8699
Fax: (704) 446-6255
Email: ruth.king@carolinashealthcare.org
CLINICAL TRIALS ? MDA RESEARCH
?Minocycline - A Multicenter, Phase 3 Trial in ALS?
http://www.mdausa.org/research/view_ctrial.cfm?id=84
Typically clinical trials do not disclose the dosages to be used in a
pending trial because the entire study is just that, a trial (and
sometimes a double blind study controlled only by the investigator ?
where neither the administering attendant nor the patient knows the
medications or dosages). For more information about Creatine and
Minocycline and ALS contact:
Mary Lyon, RN, MN
Vice President Patient Services (mary@alsa-national.org or 818-880-9007).
Lucie Bruijn, PhD
Science Director and Vice President (lucie@alsa-national.org).
CREATINE AND MINOCYCLINE AS TREATMENT AGAINST ALS
http://www.rideforlife.com/archives/000396.html
I should also mention that there are other positive studies that
admittedly need more work, but the progress is often dependent upon
people like your loved one whose participation in these types of
studies ultimately makes these achievements possible. You will find a
variety of other methods currently under examination on these pages
along with the names and contact information of a host of leading
researchers in this field:
ALS RESEARCH
http://www.rideforlife.com/archives/cat_als_research.html
THE ELENOR AND LOU GEHRIG MDA/ALS RESEARCH CENTER
http://cpmcnet.columbia.edu/dept/als/newsletter/summer-03/als-trial.htm
I hope this helps.
Regards;
Tutuzdad-ga
|
