===============================================================
== ==
== ----------- ALS Interest Group ----------- ==
== ALS Digest #815 (03 March 2001) ==
== ==
== ------ Amyotrophic Lateral Sclerosis (ALS) ==
== ------ Motor Neurone Disease (MND) ==
== ------ Lou Gehrig's disease ==
== ------ maladie de Charcot ==
== ==
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CONTENTS OF THIS ISSUE:
1 .. Treatment of ALS - What is the next step?
2 .. What has changed with Rilutal?
3 .. No Virus found in ALS study
4 .. re: heel pain and hot bottom
5 .. re: Traveling with BiPAP
6 .. New Issue of "Brick by Brick"
7 .. Donation of my body upon death
8 .. Is it really ALS?
9 .. re: transplanted diaphragm? (ALSD812)
10 . re: Stephen Hawking's computer
11 . re: Dean Kraft
12 . ideology and medical practice
13 . ALS and minor league baseball
(1)
=====
Treatment of ALS - What is the next step?
==========
Date : Fri, 2 Mar 2001
Subject: Treatment of ALS--what is the next step? - Germany
Treatment of amyotrophic lateral sclerosis--what is the next step?
Ludolph AC
Department of Neurology, University of Ulm, Steinhovelstrasse 9 89075
[Medline record in process]
Amyotrophic lateral sclerosis (ALS) is a fatal neurodegenerative disease
which was thought to be untreatable. However, recent evidence in both
experimental animals and men indicates that antiglutamatergic strategies
are the first to have an influence on its pathogenesis and slow down the
disease process. Since the effect of {*filter*} is still small, this progress
cannot only be seen as a success of the present but must also be
acknowledged as a basis for future developments. How will future studies
be designed? They will have to take into account that the disease
presumably has a long preclinical period and they will use a number of
novel compounds and treatment strategies which have been shown to be
effective in transgenic animal models. This also implies that we are
likely to use a combination of therapies and we will try to treat
patients early. The latter will be associated with the demand for a novel
clinical attitude toward the diagnosis of the disease and the development
of novel markers for both the preclinical period and the longitudinal
course of the disease.
PMID: 11200700
(2)
=====
What has changed with Rilutek?
==========
Date : Fri, 2 Mar 2001
Subject: What has changed with Rilutek?
What has changed with riluzole?
Meininger V, Lacomblez L, Salachas F
Federation de Neurologie Mazarin, Division Mazarin, Hopital de la
Salpetriere, 47 boulevard de l'Hopital 75013 Paris, France.
[Medline record in process]
Riluzole, after two significant trials, was introduced as the first
standard treatment of amyotrophic lateral clerosis (ALS) in the early
95'. After 5 years what has changed in the field of ALS? In the field
of basic science, riluzole as an active drug has largely contributed
to stimulate the research of the possible role of glutamate in the
genesis of ALS. However, the apparent simplicity of the relation between
the drug and its mechanisms has to modulated in the light of the
negativity of other trials (gabapentin) and the display of other
mechanisms of the disease and of the compound. Possible relation with
other putative mechanisms of ALS, as oxydative stress or growth factors,
could be (and probably are) also involved. In the field of its activity,
riluzole has an impact on the survival rate which has been largely
debated. Comparison with historical databases are supporting the results
of the two initial trials. Other information have been published
supporting the probable activity of the drug on the muscle strength
decline, a controversial matter. They strengthen the initial data and
give additional reasons to use riluzole as a standard treatment of
patients. In the field of the daily care, riluzole provided a real and
unique hope for ALS sufferers. Even if its activity is not as complete
as patients would have expected, it provides a hope for slowing down
the rate of evolution and abolishes the myth of "no hope, no cure" which
was the leitmotiv of patients care until recently. We have to better
define the mode of administration with regard to the clinical status of
the patients (respiratory disorders, fatigue, stiffness). In the field
of care givers, riluzole was one major factor which provided the basis
for national and international collaborations either for therapeutic
trials or for standard of care. It made possible large collaborative
programs in and among many countries. We do hope that this impulse will
continue and be stimulated by additional results both in the field of
basic science and clinical research.
PMID: 11200701
(3)
=====
No Virus found in ALS study
==========
Date : Fri, 2 Mar 2001
Subject: No Virus found in ALS study from USA
Absence of echovirus sequences in brain and spinal cord of amyotrophic
lateral sclerosis patients.
Walker MP, Schlaberg R, Hays AP, Bowser R, Lipkin WI
Department of Neurology, University of California, Irvine 92697-4292, USA.
[Medline record in process]
The role of enteroviruses in pathogenesis of amyotrophic lateral sclerosis
(ALS) is controversial. A recent study, based on reverse transcription-
polymerase chain reaction (RT-PCR) analysis of spinal cord, reported
identification of a novel echovirus in 15 of 17 French subjects with ALS
and only 1 of 29 subjects with other neurologic diseases. We established
a real-time RT-PCR method based on this novel echovirus sequence and used
this method and that previously employed for analysis of the French
subjects to determine the prevalence of echoviral sequences in spinal
cord and motor cortex of sporadic ALS subjects from the United States. No
echoviral sequences were found in 20 spinal cord and 10 motor cortex
samples from autopsy-confirmed cases of ALS or 13 spinal cord and 5 motor
cortex samples from subjects with no motor neuron disease.
PMID: 11221802
(4)
=====
re: heel pain and hot bottom
==========
Subject: Re:
Date : Fri, 2 Mar 2001
Re: Heel Pain and Hot Bottom
Both of these problems are likely to be due to poor pressure relief. When
a person experiences a loss of mobility, any area that is in constant
contact with a firm surface becomes irritated and sore. The answer to
this problem is to change positions often. There are also cushions and
heel guards available to assist in relieving pressure over bony areas.
Most medical equipment suppliers stock these.
Maribeth Salge, MA, PT, ATC, CSCS, RCEP
(5)
=====
re: Traveling with BiPAP
==========
Subject: Travelling with BiPap
Date : Sat, 3 Mar 2001
For battery backup or for travelling with a BiPap you need only a Deep
Cycle Marine Battery from most battery outlets. You should also purchase
a battery charger for it and keep the battery charged even when not in
use. And a DC Interface module, model #552097 from Respironics Inc, 1001
Murry Ridge Drive, Murrysville, Pa 15668-8550.
This kit has all the necessary bits and pieces to hook the BiPap up to
the battery. It also contains a fitting for the cigarette lighter in a
car. Carmel Duffy
(6)
=====
New Issue of "Brick by Brick"
==========
Subject: New Issue of "Brick by Brick" is now Available!
Date : Thu, 1 Mar 2001
"If I were any further behind, I wouldn't be born yet"...terry frank
It's BIG! Visit our Homepage at http://www.***.com/ and click on
the "Brick by Brick" Newsletter Button
Here's what you'll find in this month's issue:
ALS AWARENESS:
PALS ACROSS AMERICA - FAQs
ALS AWARENESS & ADVOCACY AWARD WINNERS ANNOUNCED!!
ALS NEWS, RESEARCH AND INFORMATION:
BEST ONLINE RESOURCES FOR UP-TO-DATE ALS-RELATED NEWS
BDNF NOT SHOWN EFFECTIVE IN ALS
STEM CELL RESEARCH RACING AHEAD
UMBILICAL CORD CELLS USED FOR STEM CELL RESEARCH
$58.5 MILLION DONATION TO JOHNS HOPKINS FOR STEM CELL RESEARCH
STUDY UNCOVERS MYSTERIOUS GLIAL CELLS ROLE
ALS ADVOCACY:
NEW MEDICARE POLICY EFFECTIVE JULY 1
ONLINE PETITION FOR BROAD GOVT FUNDING OF STEM CELL RESEARCH
ONLINE PETITION TO AMEND MEDICARE HOMEBOUND RESTRICTION
ALS FUNDRAISING AND EVENTS:
PREPARE YOURSELF - MAY IS ALS AWARENESS
RICH PISONE'S ROCKIN' ROUND the CLOCK for ALS
COLUMNS & REGULAR FEATURES:
Grab a Dart and Join Nina - "The View From Here"
Bill Paying Nightmares - Caregiver's Corner
Cincinnati Phenomenon - Whats Cookin'?
Penguin Alert! - Jesse's Ravings from Down Yonder
Inspiration from Rev. L Paul Fiedler - Rev's Ramblin's
Assistive Tech - Let's Talk
Glenn's picks ...Can Always Laugh
The Banner Calendar - Where in the World Are You?
(7)
=====
Donation of my body upon death
==========
Date : Mon, 26 Feb 2001
Subject: Donation of my body upon death
To: Any Research Institute
I was diagnosed with Bulbar ALS in 1998 at the VA Hosp. Brentwood
California. I am interested in donating my body to any Universaty,
Institute, etc. that would be useful in their research. The location
doesn't have to be in California, the only requirement is that they take
care of any expences. I have very extensive medical records being kept
by the VA, that I am sure that would be available to whoever receives
my body. My only requirement is that the research is valuable to
finding a cure for ALS, not just to train medical students. If any
Resp. yours H. Tesseo
PS I am ambulatory, willing and able to travel to anywhere in the
country if the institute wanted to do their own diagnosis.
(8)
=====
Is it really ALS?
==========
Date : Mon, 26 Feb 2001
Subject: Is it really ALS ?
My husband has been diagnosed going on 8 years now with ALS. Although
his diagnosis really didn't happen until he had to quit work. His
disease started with him dropping things and tingling sensation in his
hands, somewhat like carpal tunnel (?spelling). Then he couldn't hold
onto things hardly at all and lost all strength in right hand. He is
right handed so he had to learn how to work with the left. Anyways we go
to the MDA clinic in Columbus, Ohio. We recently went and a doctor that
hadn't seen my husband in a few years was shocked to find hubby still
walking. Ya see my hubby is what they say not typical ALS. He is not
affected in the legs, just the arms and the speech. He no longer has any
use of his hands or arms should I say. His speech is somewhat hard to
understand at times. But he is progressing very slowly. Thanks be to God.
Anyways recently upon our visit to OSU's MDA clinic, the doctor we hadn't
seem in awhile referred another neurologist to go and see my husband and
I. He first introduced himself and then ask if he could review the case
with us. After reviewing our 8 years with this horrible disease, he ask
if we would be interested in taking part in allowing them to do some
studies on my husband, for they hadn't really done anything in about 5
years. We of course said yes, well my hubby did. Now they are going to
study him a little better, so far they have done several chest xrays,
{*filter*}work, and a spinal tap. Next week they are going to do an MRI
(multi-view), EMG, and and autonomic(?spelling). They said that they are
hoping maybe they have misdiagnosed, but for us not to get to e{*filter*}d,
that they may have to come back to us in 2 months and say sorry, but we
tried. So we can only pray they come up with something not so terminal.
They are going to study him for 2 diseases, that it could possibly be,
I really cannot remember the exact names of the diseases, but one was
to check for an inflammatory disorder, which may affect one the same
way as ALS, but is treatable. The other they didn't really go into great
detail with us on, because they said it is pretty unlikely. So I guess
why I am writing to you all is to ask you to please pray for my husband
and I will post later what they come up with. I hope I can report
something helpful to all of you out there that are facing this horrible
diagnosis of ALS. I pray for each and everyone of you affected with this
and I will continue to for many days to come. May God keep you in his
care and may your families be blessed by his holy presence.
Barb (ALS patients wife)
(9)
=====
re: transplanted diaphragm? (ALSD812)
==========
Date : Thu, 22 Feb 2001
Subject: Re: ALSD812 - transplanted diaphragm?
Sheila,
This may help with your question: The diaphragm is the major muscle for
breathing. Chest wall (rib), abdominal and shoulder muscles can help
breathing and effective cough. As ALS progresses motor neurons are
injured so they cannot trigger function in the muscles to which they
are connected. The muscles, without nerve stimulation do not function.
Over time their is a loss of muscle, and contractures in the muscles,
without nerve stimulation. Range of motion and other physical therapy
can help to avoid contractures. Thus a diaphragm transplant would not
be the solution, if it could technically be done, since the motor nerve
function (that must be intact for the diaphragm to function) is where
the injury is in ALS. Also, phrenic nerve pacing of the diaphragm
requires some degree of motor nerve function too. These are the reasons
why, as I understand it, you do not hear of either of these strategies
for people with ALS.
On the other hand, very good breathing assistive devices are available
that can allow survival for years after respiratory muscle weakness
occurs. Many PALS on this list can comment on the details of long-term
mechanical ventilation, how to be sure it works properly and safely, so
one can continue living and enjoying life.
All best wishes,
E. A. Oppenheimer, MD
Pulmonary Medicine, Los Angeles
(10)
=====
re: Stephen Hawking's computer
==========
Newsgroups: sci.med.diseases.als
Subject : Re: stephen hawkins computer. Question?
Date : Thu, 8 Feb 2001
Quote:
> Does anyone have any ideas on how the same sensor system, used by this
> computer, can be set up to sound an alarm for an ALS pt. who is
> paralyzed with only the use of one thumb? Any input is greatly
> appreciated. Thanks.
Hmm.... You have to be a little more specific. As I understand your
question, you want to know if you can wire up something like this:
thumb switch -> box -> communications software on computer -> external
alarm
Ie. connect a thumb-activated switch to a box, that has the ability to
send keystrokes to several switch-activated systems, such as alarms,
communications software, door activators, wheel-chair control systems.
There are indeed several boxes around that allow for this. An alternative
would be to use a switch directly connected to the computer with
communications software, and use communications software that has an alarm
function built in.
You may want to check out our FAQ (work in progress) at www.secondguess.dk
for more general information on communications solutions for ALS patients.
Regards Anders S. Johansen SecondGuess
(11)
=====
re: Dean Kraft
==========
Date : Sun, 25 Feb 2001
Subject: beebopp about dean kraft
Please do not waste your money, I took my son to Dean Kraft for over a
year and spent over $10,000. DON'T WASTE YOUR MONEY. He can't do anything
for you but take your money which is the only thing that he and his wife
care about and it has to be cash
(12)
=====
ideology and medical practice
==========
Date : Fri, 23 Feb 2001
Subject: ideology and medical practice
I cannot claim to take WSampson seriously, as he too obviously plays the
role of chief ideologue for a standard medical approach, rejecting
anything that goes beyond this limited approach, without seriously
assessing it. I appreciate of course that he is no exception.
Just a note on his recent statement on homeopathy:
The effectiveness of homeopathy has indeed been proven - not by homeopaths
themselves, but by independent researchers! The problem is not that
homeopathy does not work, the problem is that it is not understood HOW it
works. That alone is enough for the medical establishment to reject it.
Homeopathy does indeed not solve ALL problems, but nor does standard
medical practice. Homeopathy cannot alone successfully fight ALS, and nor
can chemical medicines.
Patients would be better helped if doctors focussed less on ideological
debates and focussed more on what they are supposed to do: Help their
patients, any way they can, if necessary even against established dogmas!
(13)
=====
ALS and minor league baseball
==========
Subject: ALS and minor league baseball
Date : Wed, 31 Jan 2001
If your ALSA chapter have been involved with a minor league baseball team
in the last year or two, would you please drop me a note and tell me about
it? In as brief a format as you'd like, I'd like to know (1) your ALSA
chapter; (2) the name of the team involved and its minor league "level"
(A, AA, AAA); (3) what your event consisted of; (4) was the purpose fund
and awareness raising or primarily a "fun" event for pALS and their
families; (5) how successful was the event, in your opinion?
I am trying hard to get our local team, the Everett Aquasox, interested
and involved. Your information would be a really big help. Thank you!
Mark Reiman ALSA Evergreen Chapter Everett, WA
=== end of alsd 815 ===
ALS Digest #815 (03 March 2001)