===============================================================
==
==
== ----------- ALS Interest Group
----------- ==
== ALS Digest
#973 (29 December 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
==
== 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== not peer reviewed.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:
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==
==
==
== Bob Broedel; P.O. Box 20049; Tallahassee, FL 32316 USA ==
===============================================================
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==
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==
===============================================================
CONTENTS OF THIS ISSUE:
1 .. Used Medical Equipment
2 .. Charlie Wedemeyer
3 .. Greeting Cards
4 .. re: Voice Recognition Software
5 .. ALSA MA Chapter Support Group - Needham, MA
6 .. Problems with bloating
7 .. Umbilical Cord Blood
8 .. Phillip Simons
9 .. what in common?
10 . Kelly AFB?
11 . Van For Sale
12 . Cellular changes in ALS mouse revealed by monoclonal antibody Py.
13 . re: Medicare & Home Health Care for PALS (ALSD933)
14 . Celebrex
15 . ALS Society of Ontario, Canada Web Site
16 . re: inherited ALS question (ALSD946)
17 . VEGF modulates vascular permeability and inflamation in rat brain
18 . PEG tube
(1)
=====
Used Medical Equipment
==========
>From: "Peggy Robbins" probbins@northknox.net
Date : Fri, 28 Dec 2001
My husband, Jerry, died Dec 13, 2001 at the age of 57 after a 16 year
battle with ALS. On a ventilator for 14 years we acquired lots of
medical equipment I'd like to get rid of. If anyone knows how I can
go about this I'd sure appreciate any input. I'd like to get something
out of some of it. I've read this email list for a while and have
enjoyed reading most of the posts.
My best to all of you who are involved in anyway with ALS.
(2)
=====
Charlie Wedemeyer
==========
Date : Thu, 27 Dec 2001
>From: Shelby Edwards shelby@cwfo.org
My name is Shelby Edwards, writing on behalf of the Charlie Wedemeyer
Family Outreach. I'm not sure if you've heard of us, but we are a
non-profit foundation based in California that works with patients and
families with ALS. I recently received a phone call from a woman that
is on your email list requesting a copy of the book "Charlie's
Victory,"
as it was featured in your last email. First of all, I wanted to thank
you for featuring the Wedemeyer Outreach and story. It is great to know
that it's still getting out there. Just as an fyi, I did want to let
you know that the contact information listed in the email has recently
changed. The correct information is:
Charlie Wedemeyer Family Outreach
P.O. Box 1343
Los Gatos, CA 95031
Phone: 408.399.4334
Fax: 408.399.9227
Website: www.cwfo.org
Email: shelby@cwfo.org
Best Regards, Shelby
-----
Shelby Edwards
Charlie Wedemeyer Family Outreach
P.O. Box 1343
Los Gatos, CA 95031
T 408.399.4334
F 408.399.9227
E shelby@cwfo.org
www.cwfo.org
(3)
=====
Greeting Cards
==========
Date : Wed, 26 Dec 2001
>From: Meredith Dubin mdubin@worldnet.att.net
If, like me, you're a PALS who is confined to bed, you probably depend
on others to buy greeting cards for you to send to other people. If so,
you might be interested in a service I discovered at hallmark.com. They
offer a variety of paper greeting cards for many occasions and
situations. For just $.50 more than the actual price of the card (plus
the cost of a stamp), they'll hand sign the card as you wish, hand
address the envelope, and mail the card on the day you choose up to a
year in advance. You can charge the purchase to your credit card and
there's no minimum order requirement. I tried it at Christmas and it
worked very well. Meredith Dubin
(4)
=====
re: Voice Recognition Software
==========
Date : Mon, 24 Dec 2001
>From: "Grant L. Nicholas" nick@glnicholas.com
For a quick look for information regarding PALS usage of various voice
recognition software I would recommend you search either of these two
sites: http://health.oldeman.net
or http://www.glnicholas.com/
Both sites have searchable indexes of the ALS Digest and are of great
use in seeking answers to questions such as yours.
Have a Happy Holiday Season. Regards, Grant
(5)
=====
ALSA MA Chapter Support Group - Needham, MA
==========
>From: BTep100@aol.com
Date : Fri, 21 Dec 2001
ALS Association, MA Chapter
Needham, MA Support Group
Please join us for a very informative presentation!
Topic : Swallowing Problems and Communication Aids
Speaker : Adele Gagne, Speech Therapist, Beth-Israel Deaconess Medical
: Center
Location: Wingate At Needham, 589 Highland Avenue, Needham, MA
Date : Tuesday, January 8th
Time : 7:00-8:30 p.m.
Please call to register: 1-781-326-8884
Directions: The facility is easily accessible from the MA Pike, Route
128 and Route 9. From the MA Pike or Route 9, take 128 South (95) and
exit at 19B (Needham, Highland Avenue). After the first set of lights,
take a right into the parking lot of Wingate at Needham (Muzi Motors
will be on your right).
(6)
=====
Problems with bloating
==========
>From: MyrnaS@aol.com
Date : Thu, 20 Dec 2001
I have a dear friend, who was diagnosed with ALS in the summer of 1997.
At present he is confined to a motorized wheelchair, and had only
limited use of his right hand and fingers. He does still have head and
neck movement, though that has diminished. He is still able to speak
well, eat and swallow without problems. He uses a bi-pap machine at
night. Quite recently, he has developed significant problems with
bloating, right after he eats. It is severe enough, that it impairs
his breathing, and he has to use the bi-pap once or sometimes twice for
about 40 minutes at a time. He does take Creatine, and the doctor has
him on Prilosec, which doesn't seem to help much, nor do any of the
other "gas relieving" medications. We are wondering if this is a
common
problem with ALS patients, and if so, is there a solution? Any help is
greatly appreciated. Myrna Schosser
(7)
=====
Umbilical Cord Blood
==========
>From: "alaninglisa" ainglis@cfl.rr.com
Date : Fri, 21 Dec 2001
Dr. Norman Ende of the New Jersey Medical School has researched this
treatment for many years and is confident that there is a strong
potential benefit for ALS patients.
At the MND Association Symposium in Oakland Nov. l8-20, 2001, Dr.
Kalkanis (Harvard Medical School) presented data confirming some of
Dr. Ende's findings. There would appear to be a fairly plentiful
supply of cord blood in banks. Dr. Ende is so comfortable with the
safety aspect of this treatment that he would voluntarily be the
first to take part in a human clinical trial. Persons responsible
for withholding human trials are most likely not subject to the same
time constraints as imposed on ALS victims.
In contrast many ALS patients are participating in Intrathecal Gamma
Globulin treatment with, it appears, little actual concrete evidence
of benefit.
I feel that we have reached the point where expert testimony should
be presented as to why these human trials should not be conducted and
if that is not forthcoming, then ALS victims should have the
opportunity to make their own choice. ainglis@cfl.rr.com
(8)
=====
Phillip Simons
==========
>From: "News Les Turner ALS Foundation" <news@lesturnerals.org>
Date : Thu, 27 Dec 2001
Phillip Simmons, PALS and author of Learning to Fall, will be
interviewed on the "The ALS Radio Hour" Monday, January 7, 2002 at
11:00 a.m. CST. "ALS Radio Hour" is a webcast on VoiceAmerica.com
and can be accessed at http://www.voiceamerica.com/.
"The ALS Radio
Hour" is hosted by Irene Conlan and is broadcast on VoiceAmerica.com
Monday and Friday at 9:00 a.m. pacific standard time.
In Learning to Fall, Lake Forest English Professor Philip Simmons
tells the story of his spiritual journey, which began when he was
diagnosed with Lou Gehrig's disease at age 35. With wisdom and humor,
he finds answers to life's deepest questions and shows us how, against
all odds, to live lives of depth, compassion and courage.
Les Turner ALS Foundation
8142 N. Lawndale Avenue
Skokie, IL 60076
(847) 679-3311
www.lesturnerals.org
(9)
=====
what in common?
==========
>From : jstory@ecn.ab.ca
Newsgroups: sci.med.diseases.als
Date : Thu, 27 Dec 2001
What do ALS patients have in common besides the disease?
I mean personality traits, diet, any elements of life style, etc.?
Jerry Story
(10)
=====
Kelly AFB ?
==========
Date : Mon, 24 Dec 2001
>From: "M Bazin" mbazin@lycos.com
I Was just wondering about KELLY AIR FORCE BASE ... any answers ??
(11)
=====
Van For Sale
==========
Date : Fri, 21 Dec 2001
>From: Lisa Kronk lisa@alsmn.com
1996 Dodge Grand Caravan. 64,000 miles. Rollx ramp. Lowered floor.
$17,000. In the Mpls, St.Paul, MN area. Call Dennis (763) 592-1088
Lisa Kronk, RN
Patient Services Coordinator
The ALS Association/Minnesota Chapter
528 Hennepin Avenue, Ste. 610
Mpls., MN 55403
(612) 672-0484
(888) 672-0484
lisa@alsmn.com
(12)
=====
Cellular changes in ALS mouse revealed by monoclonal antibody Py.
==========
Date : Tue, 27 Nov 2001
>From: Will Hubben whubben@earthlink.net
Cellular changes in motoneurons in a transgenic mouse model for
amyotrophic lateral sclerosis as revealed by monoclonal antibody Py.
Brain Res Dev Brain Res 2001 Nov 26;131(1-2):153-9
Joosten EA, Van Westerlaak MG, Biesheuvel C, Woodhams PL, Brook GA,
Veldman H, Bar PR.
Laboratory of Experimental Neurology, Department of Neurology, Rudolf
Magnus Institute for Neurosciences, Utrecht University, P.O. Box
85500, 3508 GA, Utrecht, The Netherlands
Transgenic mice (G93A) carrying the human amyotrophic lateral sclerosis
(ALS) linked superoxide dismutase 1 (SOD1) mutations develop a
motoneuron disease resembling human ALS. The affected motoneurons are
characterized by the presence of cellular alterations. The antigen
recognized by the monoclonal antibody Py is suggested to be associated
with the neurofilamentous and microtubular elements of the cytoskeleton
of specific neuron populations including the spinal motoneurons. The
aim of the present study was to measure changes in the relative
Py-immunoreactivity per identified Choline-Acetyl-Transferase (ChAT)-
immunoreactive motoneuron during the disease progression. The relative
Py-immunoreactivity of identified spinal motoneurons was measured on
double stained (Py and ChAT) motoneurons using a digital imaging system
coupled to an inverse microscope. A significant decrease of
Py-immunoreactivity was already noted in the pre-symptomatic stages of
the disease even before the onset of massive motoneuron degeneration.
It is concluded that the Py-antibody detects early intracellular
abnormalities related to neurodegenerative changes in spinal motoneurons
of transgenic SOD1-(G93A) mice.
PMID: 11718846
Will Hubben whubben@earthlink.net
(13)
=====
re: Medicare & Home Health Care for PALS (ALSD933)
==========
Date : Tue, 23 Oct 2001
>From: carolyn s haight cshaight@juno.com
To Diane and all others concerned with getting as much custodial home
care as possible,
Unfortunately Medicare doesn't provide help for patients who need many
hours of custodial help, yet little or no hours of nursing care. They
will provide a small amount of custodial help if the patient is in need
of much more expensive nursing care. However, a new program became
available in Maryland in April 2001. LIVING AT HOME; MARYLAND COMMUNITY
CHOICES. This Dept. of Human Resources program is designed to assist
people with disabilities needing long term care between the ages of 21
to 59, who want to live at home and are eligible for specific support
services. In Md. you need to contact your DHR (1-800-332-6347) (TTY:
800-925-4434), and request a Md. Community Choices Medicaid Waiver,
which will supply the necessary processing information. It falls under
AERS, Adult Evaluation and Review Services. Basically this program is
designed for those who the cost of keeping at home is the same or less
than it would be in a nursing facility (where you need to go now to
receive paid custodial care). The state is finally realizing that it
is to their benefit to provide patients with this service. This is the
"gold card" of services. Though it is income sensitive, they
take many
other factors into consideration and it is worth presenting your case.
I don't know if there are similar programs in other states. I have also
heard several other creative ways to obtain services for ALS patients,
some of which fall under senior care and the REM (Rare and Expensive
Medicaid). Good luck to all seeking assistance!
Sincerely, Carolyn Haight cshaight@juno.com
(14)
=====
Celebrex
==========
>From: "M.Pallonji Group" mpgoc@bom3.vsnl.net.in
Date : Mon, 19 Nov 2001
I refer to the trial on the product Celebrex to combat ALS.
Kindly inform me the strength of Celebrex which is given to patients
who are undertaking the trial on a daily basis. Is it 100 or 200 mg
of Celebrex?
Regards, P. K. MISTRY
(15)
=====
ALS Society of Ontario, Canada Web Site
==========
Date : Sat, 17 Nov 2001
>From: "George Goodwin" george.goodwin@sympatico.ca
Just a note to let everyone know that we at the ALS Society of Ontario,
Canada have been busy updating our web site. We hope that it is more
informative as well as P'ALS friendly. The address is www.alsontario.org
and we would appreciate any visitors and comments as to the ease of
navigation and the overall appearance of the site as well as content.
Our inaugural Walk to D'Feet results with pictures are posted and next
year will be bigger and better. As a P'ALS myself I really must commend
all the hard work that was done and I am already looking forward to an
effort from many different places next year. At any rate feel welcome
to come and check out our site and please leave your comments as they
are important to us to make sure we are going in the right direction.
George Goodwin
(16)
=====
re: inherited ALS question (ALSD946)
==========
>From: "Loris Buccola" lbuccola@easystreet.com
Date : Tue, 13 Nov 2001
Son of ALS patient:
I would suggest that you consult with someone who understands the
medical and genetic issues involved in familial ALS. It would not be
unusual for you to be concerned about normal involuntary muscles
movements such as eyelid twitches - thinking that you were getting ALS.
I have ALS myself - and I have often misinterpreted such normal
involuntary muscle movements as evidence that my disease was moving
faster than it actually is. If I ignore them, they go away!
Love, Loris
(17)
=====
VEGF modulates vascular permeability and inflamation in rat brain
==========
>From: whubben@als-tdf.org
Date : Fri, 21 Dec 2001
Vascular endothelial growth factor (VEGF) modulates vascular permeability
and inflammation in rat brain.
Source : J Neuropathol Exp Neurol 1999 Jun;58(6):613-27
Author(s): Proescholdt MA, Heiss JD, Walbridge S, Muhlhauser J,
: Capogrossi MC, Oldfield EH,
Merrill MJ.
Institute: Surgical Neurology Branch, National Institute of Neurologic
: Disorders and Stroke,
National Institutes of Health,
: Bethesda, Maryland
20892-1414, USA.
Published: 6/1/1999
Abstract:
Vascular endothelial growth factor (VEGF) is an angiogenic growth factor
that also induces vascular permeability and macrophage migration. VEGF
expression is weak in normal adult brain, but is strongly upregulated
in glioma cells and reactive astrocytes, suggesting that chronic
overexpression of VEGF in the brain contributes to blood-brain barrier
(BBB) breakdown. We examined the effects of chronic VEGF overexposure on
the integrity of the BBB using the following approaches: 1) continuous
intracerebral infusion of VEGF via miniosmotic pump; and 2) intracerebral
injection of an adenoviral vector encoding the VEGF165 gene (AdCMV.VEGF).
After 6 days both treatments produced approximately 10-fold breakdown
of the BBB (as measured by transport of 14C-aminoisobutyric acid (AIB)
from blood into brain) compared with the respective controls (albumin
infusion or AdCMV.beta gal virus). BBB disruption in AdCMV.VEGF-treated
brains was accompanied by a severe inflammatory response not observed
in brains receiving AdCMV.beta gal or VEGF protein infusion, indicating
that neither VEGF nor viral particles alone were responsible for the
inflammatory response. However, injection of AdCMV.beta gal followed by
VEGF infusion to the same site also elicited inflammation. Chronic
overexposure of normal brain to VEGF also increased intercellular
adhesion molecule-1 (ICAM-1) and major histocompatibility complex (MHC)
class I and II expression. Although VEGF itself is not inflammatory,
VEGF may modulate immune responses in the central nervous system (CNS)
by opening the BBB, altering the immunoprivileged status of the brain,
and allowing contact between normally sequestered CNS antigens and
blood-borne immune mediators.
Abstract Archived at: http://www.als-tdf.org/alstdf/research/hubben/
viewarticle.asp?id_article=248
PubMedID: 10374752
PubMed Link: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=
Retrieve&db=PubMed&list_uids=10374752&dopt=Abstract
Will Hubben whubben@als-tdf.org
(18)
=====
PEG tube
==========
>From: "The Lauver's" mclauver@tricountyi.net
Date : Wed, 31 Oct 2001
My husband recently had a PEG tube put in and it has been a week since
the surgery. He says it hurts more now than when the doctor did the
surgery. The visiting nurse said that he would need to get used to the
pain. Is this true?
Any comments would be very much appreciated.
He cannot type a message, but he can operate the mouse so he checks the
e-mail every day.
Thanks. Craig Lauver mclauver@tricountyi.net
=== end of alsd 973 ===