===============================================================
==
==
== ----------- ALS Interest Group
----------- ==
== ALS Digest
#976 (05 Janurary 2002)
==
==
==
== ------ Amyotrophic Lateral Sclerosis (ALS)
==
== ------ Motor Neurone Disease (MND)
==
== ------ Lou
Gehrig's disease
==
==
------ maladie de Charcot
==
==
==
== This e-mail list has been set up to serve the world-wide ==
== ALS community. That is, ALS patients, ALS researchers, ==
== ALS support/discussion groups, ALS clinics, etc. Others ==
== are welcome (and invited) to join. The ALS Digest is
==
== published (approximately) weekly. Currently there are
==
== 5100+ subscribers in 70+ countries. Please be advised, ==
== the editor is not a medical doctor and the Digest is
==
== not peer reviewed. This newsletter is not intended to
==
== provide medical advice on individual health matters.
==
== Any such advice should be obtained personally from a
==
== physician.
==
== To subscribe, to unsubscribe, to contribute notes,
==
== etc. to ALS Digest, please send e-mail to:
==
== bro@met.fsu.edu (Bob Broedel)
==
==
==
== Bob Broedel; P.O. Box 20049; Tallahassee, FL 32316 USA ==
===============================================================
== Back issues of the ALS Digest are available on-line at: ==
== http://www.glnicholas.com/
==
== http://www.alslinks.com
==
== http://cc4144-a.ensch1.ov.nl.home.com/~digest
==
== http://health.oldeman.net
==
===============================================================
CONTENTS OF THIS ISSUE:
1 .. Naples Support Group
2 .. Comparison of MUNE methods in ALS mice
3 .. Peroxynitrite triggers a phenotypic transformation in spinal
cord astrocytes that induces motor neuron apoptosis
4 .. Mystery Van Problem
5 .. mycoplasma infections, viral issues, and ALS
6 .. Sample Letter for Rare Diseases Act of 2001 (S. 1379)
7 .. re: Pain
8 .. ALS and other diseases
9 .. re: Pain
10 . bowel obstruction question
11 . Stem Cell Controversy
12 . re: sleep question (ALSD933)
13 . re: prayer
14 . re: prayer
(1)
=====
Naples Support Group
==========
>From: JANIS1212@aol.com
Date : Fri, 4 Jan 2002
The ALSA Florida Chapter, Naples Support Group has changed it's meeting
day and place. Our next meeting will be held on Saturday, January 19th,
at the Cleveland Clinic Hospital in Naples, Florida. The meeting time
is from 2pm until 4pm. All PALS, their families and caregivers are
invited. For more information and to have your name added to our mailing
list, please contact Janice Esposito, 941-594-8320.
(2)
=====
Comparison of MUNE methods in ALS mice
==========
>From: whubben@als-tdf.org
Date : Fri, 04 Jan 2002
Comparison of MUNE methods in ALS mice
Source : Muscle Nerve 2002 Jan;25(1):39-42
Author(s): Shefner JM, Cudkowicz ME, Brown RH Jr.
Institute: Department of Neurology, Upstate Medical University
Published: 12/1/2002
Abstract:
Several methods of motor unit number estimation (MUNE) are in current
use. Uncertainty still exists about which is preferable and how results
obtained from one method compare to another. We studied changes with
MUNE over time in the SOD1(G93A) transgenic mouse model of amyotrophic
lateral sclerosis (ALS), using both incremental and multipoint methods.
This mouse model of motor neuron degeneration is highly consistent, with
a monotonic decline in motor neuron number starting at approximately 60
days of life. Five mice were studied four times each, starting at day 60
of life and approximately every 20 days thereafter, using both methods.
Results were quite comparable for both methods, with the incremental
method yielding slightly higher estimates of motor unit size, and hence
smaller MUNEs. Correlations between the two methods were 0.71 for single
motor unit action potential (SMUAP) amplitude and 0.95 for MUNE. In this
model, therefore, both MUNE methods yield similar estimates and are
equally effective at documenting progression of a lower motor neuron
disorder. Copyright 2002 John Wiley & Sons, Inc.
Abstract Archived at: http://www.als-tdf.org/alstdf/research/hubben/
viewarticle.asp?id_article=254
PubMedID: 11754183
PubMed Link: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=
Retrieve&db=PubMed&list_uids=11754183&dopt=Abstract
Will Hubben whubben@als-tdf.org
(3)
=====
Peroxynitrite triggers a phenotypic transformation in spinal cord
astrocytes that induces motor neuron apoptosis
==========
>From: whubben@als-tdf.org
Date : Fri, 04 Jan 2002
Peroxynitrite triggers a phenotypic transformation in spinal cord
astrocytes that induces motor neuron apoptosis
Source : J Neurosci Res 2002 Jan 1;67(1):21-29
Author(s): Cassina P, Peluffo H, Pehar M, Martinez-Palma L, Ressia A, Beckman
JS, Estevez AG, Barbeito L.
Institute: Departamento de Histologia y Embriologia, Facultad de Medicina,
Universidad de la Republica, Montevideo, Uruguay
Published: 12/1/2002
Abstract:
Oxidative stress mediated by nitric oxide (NO) and its toxic metabolite
peroxynitrite has previously been associated with motor neuron
degeneration in amyotrophic lateral sclerosis (ALS). Degenerating spinal
motor neurons in familial and sporadic ALS are typically surrounded by
reactive astrocytes expressing the inducible form of NO synthase (iNOS),
suggesting that astroglia may have a pathogenic role in ALS. We report
here that a brief exposure of spinal cord astrocyte monolayers to
peroxynitrite (0.25-1 mM) provoked long-lasting reactive morphological
changes characterized by process-bearing cells displaying intense glial
fibrillary acidic protein and iNOS immunoreactivity. Furthermore,
peroxynitrite caused astrocytes to promote apoptosis of embryonic motor
neurons subsequently plated on the monolayers. Neuronal death occurred
within 24 hr after plating, as evidenced by the presence of degenerating
motor neurons positively stained for activated caspase-3 and
nitrotyrosine. Motor neuron death was largely prevented by NOS
inhibitors and peroxynitrite scavengers but not by trophic factors that
otherwise will support motor neuron survival in the absence of
astrocytes. The bacterial lipopolysaccharide, a well-known inflammatory
stimulus that induces iNOS expression in astrocytes, provoked the same
effects on astrocytes as peroxynitrite. Thus, spinal cord astrocytes
respond to extracellular peroxynitrite by adopting a phenotype that is
cytotoxic to motor neurons through peroxynitrite-dependent mechanisms.
Copyright 2002 Wiley-Liss, Inc.
Abstract Archived at: http://www.als-tdf.org/alstdf/research/hubben/
viewarticle.asp?id_article=255
PubMedID: 11754077
PubMed Link: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve
&db=PubMed&list_uids=11754077&dopt=Abstract
Will Hubben whubben@als-tdf.org
(4)
=====
Mystery Van Problem
==========
>From: "kevin duffy" chefduffy@hotmail.com
Date : Sat, 05 Jan 2002
I know this is a long shot, but we are all out of ideas and hopefully
one of your readers can help.
When we moved to Ireland we took our van, a 1994 Plymouth Grand Voyager
with us. Without it my husband, Kevin, would be housebound. But every
once in a while, maybe every five months, for no obvious reason, the
engine will cut out, the oil light come on, and the steering lock. We
have had it at Chrysler Main Dealers and other experts, ie., fuel
injection, electrical etc., and no one has a clue why it happens. And
of course, no one wants to touch it because it is a 'foreign' car. If
I leave the van for an hour then go back to it, it will drive OK. There
is never a problem restarting and revving the engine, it is when I put
it in gear that it cuts out again.
There has to be other Grand Voyagers out there that have been converted
with a lowered floor and the Braun workings for the ramp. Has anyone
any history of this type of problem. Or perhaps someone knows a very
smart Chrysler person who loves a mystery. Any clues or suggestions
would be more than welcome, because I have now lost confidence in the
van and do not drive very far from home.
Happy New Year to everyone and may your God Bless you. Carmel Duffy
(5)
=====
mycoplasma infections, viral issues, and ALS
==========
>From: Suna Elizabeth Elizabeth.Suna@sc.siemens.com
Date : Fri, 4 Jan 2002
This is my first time writing you, though I follow your newsletter with
great interest whenever I can. My dearest friend in all the world is
now extremely ill with ALS. In his struggle, he has opted for non-
traditional (non "Western") treatment, has not taken Rilutek and has
rarely been on an antibotic. He is being cared for, in large part, by
a monastery in northern New Mexico, whose infirmary he built, so I
rarely get a chance to see him and there is often little I can do to
help. (I live in New York City.) But he asked me this week if I could
try quickly to learn whether there are any recent developments
(treatments/research) in the area of mycoplasma infections and viral
issues regarding ALS. I've spent a good bit of time searching the web
but have found nothing particularly recent or helpful -- and no real
guidance about treatment.
Can any of you help? I would be so grateful for any information you
could possibly provide.
With boundless thanks and all best wishes for joy, peace and HEALTH in
the New Year. Liz Suna
(6)
=====
Sample Letter for Rare Diseases Act of 2001 (S. 1379)
==========
>From: "Kyle Hahn" kyle@kylehahn.com
Date : Fri, 4 Jan 2002
Sample Letter for Rare Diseases Act of 2001 (S. 1379).
[Date]
The Honorable [full name]
United States Senate
Washington, DC 20510
Dear Senator [last name]:
On August 3, 2001, Senators Orrin Hatch and Edward Kennedy introduced
the Rare Diseases Act of 2001 (S. 1379). The legislation provides a
statutory authorization for the existing Office of Rare Diseases (ORD)
at the National Institutes of Health (NIH) and increases the funding
for the Food and Drug Administration's Orphan Product Research Grants
Program, which has provided vital support for clinical research on new
treatments for rare disorders. S. 1379 also increases the national
investment in the development of diagnostics and treatments for patients
with rare disorders, authorizes regional centers of excellence for rare
disease research and training, and boosts funding for the ORD to $24
million for fiscal year 2002.
[The second paragraph should go into detail about how S. 1379 will
personally benefit you, your family, other rare disease patients and
their families].
We ask that you cosponsor the Rare Diseases Act of 2001 to ensure that
the nearly [see census chart for number of constituents in your state
suffering with rare diseases] constituents in [your state] receive the
care and treatment they so desperately need and deserve.
We look forward to hearing from you very soon, as we wish to work
closely with you to ensure passage of the Rare Diseases Act of 2001 that
will provide increased clinical research and treatments for the 25
million Americans in the United States suffering with rare orphan
diseases.
Sincerely,
(7)
=====
re: Pain
==========
>From: "Darrell" dcosper@surfsouth.com
Date : Fri, 4 Jan 2002
I've had ALS for over 12 years and have seen posts about pain, (some
have it, some don't). I do have pain not severe but pins & needles
like and burning feeling mostly in feet, hands & legs but also in
groin at times. I take Neurontin and it does help with these
sensations. I also don't have as much trouble swallowing if I take the
neurontin regular. Darrrell
(8)
=====
ALS and other diseases
==========
>From: "C. C. Chan" egretinc@idirect.com
Date : Sun, 6 Jan 2002
ALS, AIDS, Asthma and More
Some suspect that ALS and AIDS are related (ALS digest 920). Gulf War
veterans are almost twice as likely to get ALS than those who did not
serve in the Gulf (see cnn report, December 24, 2001). Vaccines and
pretreatments may have activated Gulf War syndrome, in certain cases
resulting in ALS. Some ALS patients complained about asthma on a web
board. I posted a message, suggesting that ALS and asthma might be
related. A reader sb responded with e-mail, recounting her experience.
Apart from AIDS and asthma, there are many other diseases such as,
Alzheimer's, Parkinson's, Crohn's diseases, cancer . . . etc. linked to
ALS by their variation patterns. These diseases, including ALS, may be
caused indirectly by a bacterium. For detail, please see New Hypothesis,
Shortened Versions of my two booklets and Supplement by clicking the
links below.
Ching-Chee Chan, Ph.D.
January 6, 2002
http://webhome.idirect.com/~egretinc/newhypo.html
http://webhome.idirect.com/~egretinc/shortver.html
http://webhome.idirect.com/~egretinc/suppb2c.html
(9)
=====
re: Pain
==========
>From: VincentFluffy@aol.com
Date : Thu, 27 Dec 2001
To Dottie Hayden, I agree with you. We read much information about ALS
when my husband was dxed two years ago and among that info were the
words that ALS was not a "painful disease". My huaband has experienced
a lot of artheritis type of discomfort. His ALS specialist prescribed
Neroutin for the pain and I also give a couple of Tylonol when the
discomfort gets bad. It's especially in his neck and shoulders. If you
have any questions you can reach me at Vincentfluffy@aol.com.
(10)
=====
bowel obstruction question
==========
>From: "Jeff Ferrer" Jeff.Ferrer@sarvisinc.com
Date : Wed, 2 Jan 2002
I would like to ask the group for input regarding my mom who has
advanced end stage ALS. On Christmas Day she was admitted to the
hospital because of a bowel obstruction. The doctors seemed to think
that her intestines had become tangled and/or pinched. The doctors
wanted to wait and see if the problem resolved itself. They told my
family that they could operate, however there was concern that they
would not be able to get her off of the breathing machine that the
place patients on when under general anesthesia.
They told me that they could simply send her home to die and that
looks like what is going to happen since she does not want to be on
ventilator indefinitely. My questions are, can they do a spinal block
like they do for C-sections and are they other treatments that might
be able to fix her intestines? Has anyone else in this group had a
similar situation and if so, what advise can you offer?
Thanks everyone and happy 2002!
(11)
=====
Stem Cell Controversy
==========
>From: Crestwall@aol.com
Date : Mon, 31 Dec 2001
Stem Cell Controversy
One of the most politicized science issues of 2001 was the federal
funding of stem-cell research to find treatments for human diseases.
Originally isolated in 1998, stem cells are undifferentiated cells
that can develop indefinitely into more specialized body cells,
including neural, muscle, blood, and organ cells. These cells show
promise in being able to regenerate human tissue of various kinds,
with notable success in treating neurological diseases and conditions,
such as Parkinson's disease and spinal cord damage.
The use of these stem cells is controversial because the best source
for the cells is human fetal tissue from the earliest stages of
embryonic development. Scientists typically use unwanted fertilized
eggs from frozen in-vitro fertilization to harvest the stem cells,
which form 4b5 days after fertilization. These embryos must be
destroyed to harvest the cells, and those opposing the research
consider this tantamount to the taking of human life.
In Aug. 2001, President Bush announced that he would permit federal
funding of research on stem cells from human embryos, but only those
cells that had already been extracted. This effort toward compromise
seemed to satisfy neither side of the debate. Many scientists
advocating stem-cell research responded that the number of existing
lines of stem cells (according to the Bush administration about 60
lines exist) may not be enough to adequately complete research because
existing cell lines can be easily contaminated or die out. Other
advocates felt that limiting research would limit the potential of
stem cells to cure diseases and help the millions living with
Alzheimer's, diabetes, Parkinson's, and other medical conditions.
Academic biologists were also concerned about whether the private
companies and foundations holding the cell lines would be willing to
allow their use in public research, and at what cost and with what
restrictions. Meanwhile, those opposed to stem-cell research claimed
that Bush had broken his promises not to federally fund research that
destroyed human life.
Source: www.infoplease.com
(12)
=====
re: sleep question (ALSD933)
==========
Date : Thu, 27 Dec 2001
>From: Wayne Phillips wsphillips@compuserve.com
Hi Ken,
I haven't seen any answers to your questions from ALSD 933. See my
web page on bed positioning to see how I and others solved similar
problems: http://www.geocities.com/HotSprings/Falls/7437/bedpos.htm
For your knee pain, it may help to get movement for your knees during
the day or just before you go to bed. I assume that you're fairly
immobile and in a wheelchair. Joints that aren't moved will get sore.
You could have someone do passive range of motion where someone bends
and extends each knee a couple of dozen times. Another possibility is
to get a restorator through a physical therapist. A restorator is a
pair of bicycle pedals which attaches to a wheelchair. I can't push
the pedals all the way around, but I can rock them back and forth.
That gives me some exercise, helps circulation, and lets me move my
joints. take care, Wayne
(13)
=====
re: prayer
==========
>From: "Louise Palumbo" loupalumbo@msn.com
Date : Fri, 04 Jan 2002
Since reading about the healing power of prayer and the experiment the
doctor in California did...having people around the world from different
religions praying for Aids patients...and the success of such prayer, I
have been doing my own research. A minister here suggested I ask all
the people on this site to contact their own ministers or prayer lists
and ask that on the third day of every month, we all pray for a cure or
healing. I hope those of you reading this and have a belief will do
just that. I will ask my minister and all the prayer groups here to
begin praying on the third day of every month...and at the end of the
year, we will see what effect it has had. God bless you all.
(14)
=====
re: prayer
==========
>From: "Louise Palumbo" loupalumbo@msn.com
Date : Thu, 29 Nov 2001
I researched and found the Doctor who did the study on prayer for
advanced Aids patients...it was remote healing. - six days a week for
l0 weeks and those prayed for were significantly healthier than those
who received no prayer. Dr. Elizabeth Targ, director of the
Complementary Medicine Research Institute in San Francisco, headed the
study. Does anyone know her or have any connection with the
Complementary Medicine Research so that those of us interested could
participate in a similar study? She used seven different religious
and healing traditions from around the world. I don't know where to
go from here...any suggestions? Anyone willing to try to set one up
with this Doctor?
=== end of alsd 976 ===