===============================================================
== ==
== ----------- ALS Interest Group ----------- ==
== ALS Digest #828 (28 March 2001) ==
== ==
== ------ 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 ==
== 4700+ 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== not peer reviewed.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: ==
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== ==
== Bob Broedel; P.O. Box 20049; Tallahassee, FL 32316 USA ==
===============================================================
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== http://health.oldeman.net ==
===============================================================
CONTENTS OF THIS ISSUE:
1 .. Gene Chip Studies May Shed Light on ALS
2 .. Implementation of Medicare Waiver
3 .. re: Breathing problems when I inhale (ALSD825)
4 .. Support Groups in Washington
5 .. Grape Seed Extract
6 .. video documenting damage from mercury exposure
7 .. acronyms
8 .. re: Question re Sony Playstation
9 .. re: Medicare confusion
10 . Accessible Van Rental
(1)
=====
Gene Chip Studies May Shed Light on ALS
==========
>From : "Hope for ALS" <p.clark@prodigy.net>
Subject: press release March 28, 2001 - gene chip studies on ALS
Date : Wed, 28 Mar 2001
Press Release Hope for ALS
Gene Chip Studies May Shed Light on ALS Disease Mechanisms
HOUSTON - March 28, 2001 - Hope for ALS has contributed $ 36,000 in
support of investigations at Brigham and Women's Hospital and Harvard
Medical School using gene chip array techniques to identify those genes
associated with the disease process operating in sporadic ALS (sALS).
This is a continuation of earlier research conducted at Harvard by
Robert Brown M.D., Steven Gullans, PHD, and Fernando Dangond, M.D. of
the medical faculty. This work attempted to identify ALS-associated
genes based on a comparison of genes activated in motor neuron tissue
from ALS patients with tissue from control subjects not suffering from
ALS. Present investigations by Dr. Dangond extend the study to the
identification of ALS-associated genes in sALS patient blood.
Information about the genes activated in sALS patient blood will help
determine the nature of disease mechanisms that may be operating in the
body as a whole and not just those events localized to diseased motor
neuron tissue. Insights might also enable the development of early
diagnostic blood tests for sALS.
Sporadic ALS is a complex disease involving interactions between many
systems. A diverse array of effects have been found to be associated
with the disease process including glutamate transporter deficiencies,
products of oxidative stress, interference with cell metabolic functions
and activation of apoptosis which is the process of nerve cell self-
destruction. No unifying theory to explain this range of effects has yet
been promulgated.
Recent advances in DNA technology have afforded techniques that permit
one to examine the events that occur in sALS diseased tissue in a more
inclusive manner. By studying the genes that control various biological
functions, one can learn which of those functions are involved in sALS.
"Gene chip DNA microarrays" allow one to simultaneously identify the
genes that are expressed in a given tissue which enables one to discern
the full spectrum of events operating in the disease process. Thousands
of genes can be screened for activation at a single time. The resulting
"snapshot" view of the processes going on as ALS destroys the motor
neurons can tell us which processes are implicated, thereby narrowing
the field of possible study.
Results to-date suggest that glutamate transport, oxidative damage and
cell self-destruction processes, among others, may be affected in the
course of the disease. A manuscript reviewing these results in detail
is currently in preparation for publication. It is expected that planned
investigations with sALS patient blood samples will reveal what general
processes might also be involved such as the body's inflammatory response
to the nerve damage. If clear markers for the disease are found in the
blood, it may be possible to diagnose the disease at a much earlier point
than is currently possible based on the appearance of gross symptoms.
Earlier application of beneficial therapies might afford more pronounced
results for ALS patients than are currently observed in ALS patients in
the advanced stages of the disease.
Hope for ALS (501 C 3 tax exempt)
7822 Santa Elena, Suite 100
Houston, Texas 77061=20
713-643-2898 - office
509-351-8625 - fax
www.hopeforALS.org
Tax Id: 52-2137799
(2)
=====
Implementation of Medicare Waiver
==========
>From : "Dean Karnoski" <dkarnoski@hotmail.com>
Subject: Implementation of Medicare Waiver
Date : Wed, 28 Mar 2001
NEWS FROM ALSA
Implementation of Medicare WaiverAdvocacy Update #2 March 28, 2001
The Health Care Financing Administration (HCFA) has confirmed that as of
July 1, 2001, ALS patients will no longer have to wait 24-months for
Medicare benefits. As you know, this is due to the historic legislation
that was passed by the 106th Congress and signed into law by President
Clinton.
HCFA notified The ALS Association (ALSA) that due to the
straightforwardness of the bill and a prior precedent, no comment period
would be necessary.
HCFA is currently notifying each Social Security Administration Office of
this new law. HCFA has also identified 1,360 persons with ALS that on
July 1, 2001 will be entitled to Medicare benefits. A letter in mid-June
will notify these individuals that they will be eligible July 1. This
letter will serve as the patients official verification to their provider
until their Medicare Card is received in mid-August.
Because of computerized processing, 260 of the 1,360 people with ALS
eligible on July 1 will receive notice this spring of an effective
Medicare date. Please be aware that this information is now superceded
by the ALS Medicare Waiver. It is not possible to halt the HCFA package
mailing to these 260 people. However these 260 individuals will receive
a second letter notifying them to disregard this package and follow the
instructions of their June letter.
While there has been interest in an earlier start date for this new law,
HCFA is bound by the statuary language that Congress passed which states
July 1, 2001 as the start date.
In the future, when a person with ALS is approved for Social Security
benefits (which still takes 5 months after meeting the criteria for
disability), it will also include Medicare benefits.
As the implementation date draws closer, The ALS Association will
provide you with more specific dates and talking points.
We have all worked hard for more than three years to achieve this goal.
It is now vitally important that we get the word out.
As always if there are any questions, please call ALSA's Office for
Government Relations and Public Affairs, toll-free at 1-877-444-ALSA.
Thank you for your continued assistance and patience with this matter.
PLEASE NOTE: While we encourage everyone to use this memo to provide
information to as many ALS patients and families as possible, we ask
that you duplicate and distribute this memo in its entirety, with no
deletions or additions.
(3)
=====
re: Breathing problems when I inhale (ALSD825)
==========
Date : Mon, 26 Mar 2001
>From : "Edward Anthony Oppenheimer, MD" <eaopp@ucla.edu>
Subject: ALSD 825 (10) Breathing problems when I inhale
Dear Dave Gilman,
When I read your comments the following thoughts came to mind. You may
want to discuss these with your doctor to see what would be best for you.
When ALS impairs the bulbar motor neuron function the muscles, in the
pharynx and upper airway, ...they often do not coordinate properly,
become weak and lack their normal tone. The result may be difficulties
with swallowing, speech and with air flow into the upper airway. When
you exhale the airflow actually pushes the tissues in the upper airways,
in the back of the throat, further apart, increasing the opening. The
airflow problem occurs mostly when you inhale since the sucking-in
effort of inhaling brings some of the tissues closer together giving
that fluttering sensation. It could even give a momentary sensation of
air being blocked or cut off. These problems are often much worse at
night during sleep, and can result in low oxygen saturation levels. As
long as it is minimal, you might be inclined to ignore it. However it
may be a signal that action is needed.
One approach, depending on your physician's advice, would be to check
your breathing muscle function with tests such as:
<> Vital capacity (sitting up and lying down)
<> Maximal inspiratory and expiratory force (MIF and MEF)
<> a flow-volume loop which would identify a typical saw tooth pattern
during inhalation corresponding to the fluttering sensation you have
<> Peak flow and peak cough flow
<> overnight oxygen saturation (Nocturnal oximetry)
These are rather simple tests to do, and if there are abnormalities then
you should consider learning how to use one of the bilevel noninvasive
ventilators at home (such as the BiPAP -- but there are many other brands
available today). There are some days when your problem is probably
worse, and other times it is better. The pulmonary function test will
be most useful when done on a "bad day" - and may need to be repeated
if it turns out you are scheduled when you are at your best function.
A bilevel noninvasive ventilator can be used at night, or only when you
feel the need, and then you would breathe on your own the rest of the
time (without using equipment). Learning how to use this assistive
equipment will give you freedom and protection. And, you will find out,
by actually trying it, whether it is good for you. It may take a few
weeks to learn and become comfortable with the technique. The attachments
available, nasal mask, nasal pillows, full face mask or mouthpiece --
need to be fitted and adjusted properly for you by a respiratory
therapist with experience doing this (someone who takes the time
initially and does follow-up re-check visits; someone who is caring and
concerned). If you get a "simple respiratory infection, a cold" and
you
know how to you this equipment, it could make all the difference
between doing well and requiring hospitalization.
Some of these body signals, such as you mention, are a "heads up" to
warn you to do something now so you stay safe and maintain the greatest
level of independence possible.
With all best wishes,
Edward Anthony Oppenheimer, MD, FCCP
Pulmonary Medicine, Los Angeles
Email: Eaopp@UCLA.edu
>I was diagnosed with Motor Neurone Disease last year. From reading
>various emails in the bulletin, what I have appears to be known as
>Bulbar ALS as it affects mainly my speech. In recent weeks I have
>found that when I inhale I get a sort of fluttering in my chest. When
>I exhale I do not appear to have this problem. My doctor checked my
>chest and agreed that there was unusual movement when I inhaled.
>
>I do not know whether this is the onset of breathing difficulties or
>whether it is just a nervous reaction to the disease. Has anybody
>experienced similar problems and can anyone tell me how breathing
>problems usually start? Thank you Dave Gilman
(4)
=====
Support Groups in Washington
==========
>From : "mrenn" <mrenn@email.msn.com>
Subject: Support Groups in Washington
Date : Wed, 28 Mar 2001
Mary Renn, MPT
Patient Services Coordinator
The ALS Association Evergreen Chapter
maryrennpsc@alsa-ec.org
The ALS Association Evergreen Chapter provides 5 monthly support groups
in Western Washington
Caregiver Support Group
Second Saturday 9:30-11:30am
Highland Community Center, Bellevue
Kent Support Group
Second Sunday 4:00-6:00pm
Kent Covenant Church
Peninsula Support Group
Second Tuesday 6:00-8:00pm
Tri-Area Community Center, Chimacum
Everett Support Group
Third Wednesday 6:30-8:30pm
Providence Everett Medical Center, Pacific Campus
Bellevue Support Group
Fourth Thursday 6:30-8:30pm
Highland Community Center, Bellevue
Please contact the Evergreen Chapter of the ALS Association for further
information at info@alsa-ec.org or 425-656-1650.
(5)
=====
Grape Seed Extract
==========
Date : Mon, 26 Mar 2001
>From : Will Hubben <whubben@earthlink.net>
Subject: Grape Seed extract proves a potent antioxidant
Grape Seed extract proves a potent antioxidant
By Nancy A. Melville, Health Scout Reporter
SUNDAY, March 18 (HealthScout) -- One of the best sources for the ever-
important antioxidants your body needs can be found in tiny grape seeds.
Grape seed extract, in fact, appears to be a more potent antioxidant
than such super-industrial mainstream vitamins as C, E and beta-
carotene, says a new study.
The study, presented at last month's meeting of the International
Chemical Congress of Pacific Basin Societies in Honolulu, finds that
grape seed extract contains compounds that protect the brain, spinal
cord, heart, kidney and lungs.
Previous research has shown that grape seed extract also can improve
circulatory problems and reduce the effects of the eye disorder known
as macular degeneration, the leading cause of blindness in the world.
Mary Beth Augustine, a registered dietitian and faculty member at the
Beth Israel Center for Health and Healing in New York City, says you
can reap the benefits of grape seed extract by taking 50 milligrams a
day.
But unless you're a true grape nut, getting the benefits from the
fruit itself may be a challenge.
"You'd have to eat 1 to 2 pounds of grapes to get the amount of extract
necessary to be beneficial," Augustine says.
She says the specific beneficial properties in grape seed extract,
called proanthocyanidins, are not just found in grapes.
"There are proanthocyanidins naturally occurring in many fruits and
vegetables; however, grape seeds are exceptionally high sources of this,"
she says.
Tammy Baker, a spokesperson for the American Dietetic Association, says
the extract offers a number of benefits and is considered safe in
moderate amounts.
"In addition to improving circulation and retinal problems, grape seed
extract has been recognized as having anti-inflammatory properties,"
she says.
"There have been some animal studies showing liver toxicity in very high
doses, but the levels sold as supplements are considered to be safe,"
Baker says.
To get enough antioxidants, however, Baker says nothing beats good
nutrition.
"Your best bet is to make sure to get a variety of foods, balanced diet
and everything in moderation."
(6)
=====
video documenting damage from mercury exposure
==========
>From : Bernie Windham <bwindham@psc.state.fl.us>
Subject: video documenting the type of damage seen in ALS and
: Alzheimer's by low level mercury exposure
Date : Wed, 28 Mar 2001
For a video documenting the kind of damage caused by mercury in ALS and
Alzheimer's see the following Calgary Uinv. study:
Hg & Nerve Growth Cones Retrograde degeneration of neurite membrane
structural integrity of nerve growth cones following in vitro exposure
to mercury: http://www.altcorp.com/hgnerves.htm
(7)
=====
acronyms
==========
Date : Wed, 28 Mar 2001
>From : JTMoodSFO@aol.com
Subject: Re:
Please do not take this the wrong way, Dr. Oppenheimer, but the medical
acronyms need definition for those of us who are lay persons not educated
in medicine. To me, even though I was brought up by a Doctor and a Nurse,
these acronyms are little more than alphabet soup.
Warm regards to you and all on the list, John Mood
>"... FVC reaches 50%, ... MIF ... MEF ..."
>(Excerpt from Dr. Oppenheimer's note of 3/25/2001)
(8)
=====
re: Question re Sony Playstation
==========
Date : Wed, 28 Mar 2001
>From : "DR. ING. SALVADOR PRECKLER" <tenerife@canariastelecom.com>
Subject: Question re Sony Playstation
May be someone thinks I am silly, but the best thing that can possibly
be done is to consult with the SONY COMPANY. This is a very powerful and
prestiged enterprise and they may be more than willing to help in this
matter.
My second idea is to contact several school teachers and get them to
challenge their pupils to find an answer to the problem. Most of the
young people have playstations and the challenge might be welcome.
Cordially, Salvador.
(9)
=====
re: Medicare confusion
==========
>From : Dubin Alan P Aerospace <alan.dubin@aero.org>
Subject: RE: Medicare confusion
Date : Wed, 28 Mar 2001
Dawn,
Under current law, persons receiving Social Security Disability benefits
(SSDI) are eligible for Medicare after 24 months on SSDI. The new law,
which takes effect July 01, waives this 24-month waiting period for ALS
pateints. But the requirement to be receiving SSDI remains. - Alan -
>I am confused about the Medicare ruling that is to "kick in" this
>summer. I am 63 and thought I would be covered. It seems I won't be
>covered because I am not on SSDI. I thought it was for all of us with
>ALS. Could someone explain. Thanks, Dawn Pratt
(10)
=====
Accessible Van Rental
==========
>From : "Flippin, Susan" <sflippin@pbsj.com>
Subject: Accessible Van Rental
Date : Tue, 13 Mar 2001
This is in response to the question about accessible van rentals.
There is one company that I became aware of during the ALS symposium on
March 10 in Las Vegas. It is called: Wheelchair Getaways. They have
locations across the U.S., and the toll-free no. for national
reservations is: 800-652-2042. Susan Flippin sflippin@pbsj.com
=== end of alsd 828 ===
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