===============================================================
==
==
== ----------- ALS Interest Group
----------- ==
== ALS
Digest #977 (06 January 2002)
==
==
==
== ------ Amyotrophic Lateral Sclerosis (ALS)
==
== ------ Motor Neurone Disease (MND)
==
== ------ Lou
Gehrig's disease
==
==
------ maladie de Charcot
==
==
==
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== Any such advice should be obtained personally from a
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===============================================================
CONTENTS OF THIS ISSUE:
1 .. Skeleton Key 1.2.0
2 .. re: mycoplasma infections, viral issues, and ALS (ALSD976)
3 .. re: problems with bloating
4 .. Mobility Van For Sale
5 .. re: Greeting Cards (ALSD973)
6 .. humour
7 .. The Dark Side of Oxygen
8 .. Pillow/head support help
9 .. Protein Aggregation in ALS Neural Tissues
10 . How can I help my father?
11 . Acurian, Inc.
(1)
=====
Skeleton Key 1.2.0
==========
Date : Sun, 06 Jan 2002
>From: Dov Wisebrod <dov@catalaw.com>
Hi. As some of you know, a couple of years ago I was bored and looking
for a challenge so I took up computer programming. I have ALS and set
out to develop superior software to provide for my current and future
computer access and communication needs. Skeleton Key is the result.
I've just released a new version. If you have the previous version,
please update. If you don't have Skeleton Key yet, why not try it? You
can download it free. If you do use Skeleton Key, you can receive these
announcements directly by subscribing to the free mailing list. Just go
to the website and click Subscribe.
Dov
Skeleton Key 1.2.0
http://www.catalaw.com/sk/
Skeleton Key is a complete software solution for anyone who has physical
difficulty using a standard keyboard and/or mouse. It can also serve as
a vocal communication aid. In fact, I created it for myself because I
have ALS (Lou Gehrig's disease) and I was not satisfied with other
products. Skeleton Key is among the most powerful and versatile software
of its kind. And it's still only $199!
Version 1.2.0 of Skeleton Key is now available.
INSTRUCTIONS
Go to Skeleton Key on the web at http://www.catalaw.com/sk/
and download
the installation file that's right for you.
If you have the previous version of Skeleton Key (1.1.0), download the
update -- sk120u.exe. Run it on your computer. It will update your
software.
If you are new to Skeleton Key, download the full installation package
sk120.exe. Run it on your computer. It will install the software.
WHAT'S NEW
Key Functions:
- Mouse Button mode has new repeating dwell left-click option
- Action mode has new action ("MoveSK") to move SK's window
- Script mode can include Action and Window Move/Size functions
Text-to-Speech:
- Speaker history list expanded to hold up to 20 statements
- Speaker appears in the task list and can be minimized
Profiles:
- optionally restore SK's window by moving mouse on tray icon
- easily position SK's window via the Profile Editor
Keyboards:
- added the new Mouse function to mouse.skb and mousespk.skb
- added the new Action function to scan.skb and scanspk.skb
Miscellaneous:
- Profile Editor and Speaker windows don't obscure SK's window
- SK can click its own user messages and file/color dialogs
- adjusted word completion to ensure detection of Backspace
plus a few other small changes. For more information, please consult
the relevant section of Skeleton Key Help.
PERSONAL NOTE
Thanks for using Skeleton Key. And thanks for all the great feedback!
This update includes several new features I think you'll find very
useful. As always, please let me know what you think. You can reach me
in the website forum or use e-mail.
Dov Wisebrod
CataLaw Inc.
(2)
=====
re: mycoplasma infections, viral issues, and ALS (ALSD976)
==========
Date : Sun, 06 Jan 2002
>From: "Prof. Garth L Nicolson" gnicolson@immed.org
In reply to the request on information on mycoplasmal infections in ALS
patients, I would like to forward the abstract of an accepted paper
which will appear in the next issue or so of the Journal of Clinical
Neuroscience. Prof. Garth Nicolson
Journal of Clinical Neuroscience 2002
High Frequency of Systemic Mycoplasmal Infections in Gulf War Veterans
and Civilians with Amyotrophic Lateral Sclerosis (ALS)
Garth L. Nicolson PhD1,2*, Marwan Y. Nasralla PhD1,3, Joerg Haier MD, PhD
1,4 and John Pomfret PhD2
1 The Institute for Molecular Medicine, Huntington Beach, California,
USA;
2 Gulf War ALS Research Project, Parsons Walk, Wigan, England, UK;
3 International Molecular Diagnostics, Inc., Huntington Beach,
California, USA;
4 Department of Surgery, Wilhelm University, Muenster, Germany
*Correspondence: Prof. Garth L. Nicolson, The Institute for Molecular
Medicine, 15162 Triton Lane, Huntington Beach, California 92649 USA;
Tel: +1-714-903-2900; Fax: +1-714-379-2082; Website: www.immed.org;
Email: gnicolson@immed.org
Key Words: amyotrophic lateral sclerosis, infections, mycoplasma, blood
analysis, PCR, Gulf War Illness
ABSTRACT The presence of systemic mycoplasmal infections in the blood
of Gulf War veterans (n=8) and civilians (n=28) with Amyotrophic Lateral
Sclerosis (ALS) and age-matched controls (n=70) was investigated by
detecting mycoplasma gene sequences with forensic Polymerase Chain
Reaction (PCR) and back-hybridization with a radiolabeled internal
oligonucleotide probe. Almost all ALS patients (30/36 or ~83%) showed
evidence of Mycoplasma species in blood samples, whereas <9% of controls
had blood mycoplasmal infections (P<0.001). Using PCR ALS patients with
a positive test for any mycoplasmal infection were investigated for the
presence of M. fermentans, M. pneumoniae, M. hominis and M. penetrans
in their blood. All Gulf War veterans with ALS were positive for M.
fermentans, except one that was positive for M. genitalium. In contrast,
the 22/28 civilians with detectable mycoplasmal infections had M.
fermentans (13/22, 59%) as well as other Mycoplasama species in their
blood, and two of the civilian ALS patients had multiple mycoplasma
species (M. fermentans plus M. hominis). Of the few control patients
that were positive, only two patients (2/70, 2.8%) were positive for
M. fermentans (P<0.001). The results support the suggestion that
infectious agents may play a role in the pathogenesis and/or progression
of ALS, or alternatively ALS patients are extremely susceptible to
systemic mycoplasmal infections.
(3)
=====
re: problems with bloating
==========
Date : Sun, 6 Jan 2002
>From: Wayne Phillips wsphillips@compuserve.com
Hi Myrna,
As I understand it, we PALS swallow air with each swallow as those
muscles weaken. I get air in my stomach too, and my solution is that
I have a PEG tube WITHOUT a one way valve which allows someone to pull
the air out with a syringe, or let the air flow out.
Good luck, Wayne
Wayne S. Phillips wsphillips@compuserve.com
http://www.geocities.com/HotSprings/Falls/7437/tpals.htm
(4)
=====
Mobility Van For Sale
==========
>From: TJCOUGH@aol.com
Date : Fri, 4 Jan 2002
1999 Ford Winstar with I.M.S. conversion features.
Go to: http://van.coughlins.net
for complete details ,including pictures
Thank You, Tom Coughlin
(5)
=====
re: Greeting Cards (ALSD973)
==========
>From: HollyHoffy@aol.com
Date : Mon, 31 Dec 2001
I read with interest Merideth's contribution regarding hallmark.com.
It's wonderful that new services exist for those of us that are unable
to send "the very best" ourselves. I offer another option: create your
own!
There are a number of greeting card software packages available that
lets one's creativity run wild. For example, Print Master, Print Artist
and American Greetings CreateaCard; I think Hallmark has one, too, among
others. These packages offer projects for cards, banners, labels,
stickers, certificates, crafts, envelopes, etc. both pre-designed or
from scratch.
There are also many different papers and cardstocks available to make
your creations special from plain scored cards to decals and magnets!
It's easy and fun to design your own items.
I've had people awestruck at some of my cards and many save them unlike
store bought ones. I theme my cards and envelopes, make birthday banners
and decals for friends' children, make garage sale signs and puzzles to
name a few things.
That's the good news. The bad news is that the newer versions of these
software packages offer so many graphics and projects that numerous CDs
are required. That means CD swapping and enlisting the help of an able-
bodied person. However, some projects and graphics are available on
the main disc which is plenty to get one started without changing disks.
As a final tip, CreatACard Gold 3 is contained on one CD. I suggest
checking eBay once in a while for a copy.
So, while Hallmark may believe they have the very best, the very best
really comes from the creator ... you! Oh, don't blame me if my
suggestion creates a creative monster out of you! Have fun!
Holly HollyHoffy@aol.com
a/k/a BristolStomp@aol.com
(6)
=====
humour
==========
>From: "Maureen Coppolaro" mtcopp@bigpond.com
Date : Wed, 31 Oct 2001
From the bottom of my heart I would like to say thank you for the many
responses I had regarding visitors to our home through the progression
of my husbands condition. I have been overwhelmed with the wonderful
support and advice that people in the same position have offered. A
number of you stated how important it is to maintain a sense of humour
throughout all of this, I truly believe that humour is essential when
trying to get over life's hurdles. Fortunately, my husband and I share a
wonderful sense of humour which is what attracted us to each other when
we met 17 years ago. The following is an example of my husbands
(paralysed both arms now) sense of humour.
After registering and being granted a disability payment from the
government he received a letter a number of weeks later from the state
Job agency. The letter offered him employment assistance and training in
preparation for a new vocation. He was also invited to call and make an
appointment with an employment officer to discuss his options for
re-training in a new career. After reading the letter, my husband said "
I'll make an appointment to go and see someone and tell them I've
decided I want to be trained to become a professional tennis player" Oh
how we giggled at the thought of confronting an unsuspecting employment
officer with such a declaration. Life still has its light moments and
its those moments that keeps us going.
Thanks Maureen
(7)
=====
The Dark Side of Oxygen
==========
>From: whubben@als-tdf.org
Date : Fri, 21 Dec 2001
Rusting from Within: The Dark Side of O2
Source : BioMedNet.com
Author(s): Pamela Weintraub
Published: 12/21/2001
Abstract:
Oxygen, so necessary for aerobic life, is also toxic to all life
forms. Free radicals produced as by-products of aerobic metabolism in
mitochondria contribute to certain neurodegenerative diseases and
aging. At the forefront of the fight against these scavengers, the
Oxygen Society and its members seek to understand the mechanisms of
free radical damage and develop interventions to slow the damage.
Abstract Archived at: http://www.als-tdf.org/alstdf/research/hubben/
viewarticle.asp?id_article=251
Will Hubben whubben@als-tdf.org
(8)
=====
Pillow/head support help
==========
Date : Fri, 28 Dec 2001
>From: "Elizabeth H." betsyh@lms.kent.edu
I could use some suggestions about providing better head support for
my husband in bed. His neck has weakened more lately, and is especially
troublesome as the day progresses and he tires. He uses a head mouse
that tracks a dot on his glasses so he has to be able to move his head
a little to position the dot on the screen. He uses a soft feather
pillow and we try to form it as best we can, but would like to try to
come up with something better. All the neck rolls we've found are too
thick.
What would be the ticket would be something custom designed to exactly
fit his neck space, with higher ends for support, I think. However,
I'd like to hear what solutions others have come up with. I can't think
of any way to support his head to the bed itself, while still allowing
some movement.
Another problem we have with head support is in the shower/commode
chair. When he is in it and it isn't tilted back all the way, his head
falls forward. I can't tilt it all the way while it is over the toilet
because the tank is in the way. I tried using a nylon stocking to tie
his head to the head rest, but it is too stretchy and relaxes after a
while. Most other things are too slippery. Anybody have tips for
that?
Thanks for any advice. Betsy Hagan
(9)
=====
Protein Aggregation in ALS Neural Tissues
==========
>From: whubben@als-tdf.org
Date : Fri, 21 Dec 2001
Histological Evidence of Protein Aggregation in Mutant SOD1 Transgenic
Mice and in Amyotrophic Lateral Sclerosis Neural Tissues.
Source : Neurobiol Dis 2001 Dec;8(6):933-941
Author(s): Watanabe M, Dykes-Hoberg M, Cizewski Culotta V, Price DL,
: Wong PC, Rothstein JD.
Institute: Departments of Neurology and Neuroscience, Johns Hopkins
: University, Baltimore,
Maryland
Published: 12/1/2001
Abstract:
The mechanisms leading to neurodegeneration in ALS (amyotrophic lateral
sclerosis) are not well understood, but cytosolic protein aggregates
appear to be common in sporadic and familial ALS as well as transgenic
mouse models expressing mutant Cu/Zn superoxide dismutase (SOD1). In
this study, we systematically evaluated the presence of these aggregates
in three different mouse models (G93A, G85R, and G37R SOD1) and compared
these aggregates to those seen in cases of sporadic and familial ALS.
Inclusions and loss of motor neurons were observed in spinal cords of
all of these three mutant transgenic lines. Since a copper-mediated
toxicity hypothesis has been proposed to explain the cytotoxic gain-of-
function of mutant SOD1, we sought to determine the involvement of the
copper chaperone for SOD1 (CCS) in the formation of protein aggregates.
Although all aggregates contained CCS, SOD1 was not uniformly found in
the inclusions. Similarly, CCS-positive skein-like inclusions were
rarely seen in ALS neurons. These studies do not provide strong evidence
for a causal role of CCS in aggregate formation, but they do suggest
that protein aggregation is a common event in all animal models of the
disease. Selected proteins, such as the glutamate transporter GLT-1,
were not typically observed within the inclusions. Most inclusions were
positively stained with antibodies recognizing ubiquitin, proteasome,
Hsc70 in transgenic lines, and some Hsc70-positive inclusions were
detected in sporadic ALS cases. Overall, these observations suggest
that inclusions might be sequestered into ubiquitin-proteasome pathway
and some chaperone proteins such as Hsc70 may be involved in formation
and/or degradation of these inclusions. (c)2001 Elsevier Science.
Abstract Archived at: http://www.als-tdf.org/alstdf/research/hubben/
viewarticle.asp?id_article=249
Will Hubben whubben@als-tdf.org
(10)
=====
How can I help my father?
==========
>From : juttakivi@yahoo.com
(Jutta Kivi)
Newsgroups: sci.med.diseases.als
Subject : How could I help my father?
Date : 29 Dec 2001
My 50 year old father was diagnosed ALS two years ago. Physicly he is
still in quite good condition, mostly having problems with limp left
hand, but he is suffering from depression and other mental problems.
He has turned extremely aggressive, shouting all the time, cant get
sleep at nights, unable to make decisions and avoiding any social
contacts. He is also treating my mother with extreme mental violence
with the result that my mother has lost her zest for life. At the same
time he is physically totally dependent on her, refusing to use any
instruments or to do anything by himself (like a sandwich) He cant
accept the fact that he has this fatal disease and he dont want to
talk about it. My relatives think that he shold be understood because
he is sick. I want to help him because he cant be happy living this
way. I tried to talk with him about mental help and he said he dont
want to see me ever again and I should not even come to his funeral.
Do you have any similar experience? How could I help him? How could I
talk with him about the situation without offending him?
I think he needs professional help and someone "outsider" to talk to.
Do you have any experience of this kind of therapy or medical help
(pills for depression?)? I feel totally helpless with this.
(11)
=====
Acurian, Inc.
==========
>From: Erika Hedden erika.hedden@acurian.com
Date : Fri, 28 Dec 2001
New ALS Drugs @ Acurian Inc.
Acurian provides patients and caregivers an easy way to find the doctors
and clinics that are recruiting participants for clinical trials. People
who take part in clinical trials may receive early access to drugs,
before they have received FDA approval for use by the general public.
Please use the link below to visit the Acurian Web site for more
information and news about clinical trials and new and emerging drug
treatments for ALS.
http://www.acurian.com
=== end of alsd 977 ===