===============================================================
== ==
== ----------- ALS Interest Group ----------- ==
== ALS Digest #835 (12 April 2001) ==
== ==
== ------ Amyotrophic Lateral Sclerosis (ALS) ==
== ------ Motor Neurone Disease (MND) ==
== ------ Lou Gehrig's disease ==
== ------ maladie de Charcot ==
== ==
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== the editor is not a medical doctor and the Digest is ==
== not peer reviewed. This newsletter is not intended to ==
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== ==
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===============================================================
CONTENTS OF THIS ISSUE:
1 .. re: ALS or Lymes?
2 .. 15th year anniversary
3 .. ALS Association Symposium
4 .. Mitch Albom to speak at College of Lake County
5 .. re: ALS or Lyme
6 .. ALS Memorial Candlelight Vigil
7 .. Easy Lift
8 .. Stem Cell trial?
9 .. ALS Awareness Month?
10 . Mechanism of Huntington's Disease Cellular Toxicity Revealed
11 . Seeking RN
12 . Fort Myers area support group
13 . Acupuncture
14 . steroid query
(1)
=====
re: ALS or Lymes?
==========
Date : Wed, 11 Apr 2001
Subject: Re:
Re the query about length of time and route of administration for
antibiotics in "ALS or Lymes?"
The safest advice is to be sure your physician is a neurologist, and if
you have not seen one, ask for a consultation. If the physician is a
neurologist and there is no improvement on antibiotics, the diagnosis of
ALS should be confirmed by the doctor or by other opinions. There should
not be a great confusion over which disease you have.
WSampson MD
(2)
=====
15th year anniversary
==========
Subject: 15th year anniversary
Date : Wed, 11 Apr 2001
Fellow pals i'm writing this to tell you that i'm now celebrating my 15th
year anniversary with als. Yes i did say celebrating, because i'm very
happy to still be here and i am most appreciative. From day one we are
bombarded with nothing but negative news, well i want to pass on some
positive news for a change. I am living proof that it's possible to deal
and live with als for a long time, as well as find happiness and lead a
full life. My kids were only six and 4 when i was stricken, and now i've
lived to see my daughter allison finish her junior year at princeton, and
my son justin his freshman year at university of {*filter*}ia. The only advice
that i will offer is you have to somehow maintain your sense of humor. I
realize that sounds simplistic when everything in your life is upside down,
but if you can laugh at the absurdities in your life, it will relax the
people around you and they will want to spend more time with you. God
bless everyone of you, stephen kotzin
(3)
=====
ALS Association Symposium
==========
Date : Mon, 9 Apr 2001
Subject: ALS Association Symposium
MA Chapter ALS Association Symposium
Sunday, April 29, 2001 Holiday Inn Conference Center Dedham, MA
Looking for volunteer to demonstrate to patients and caregivers how to
access popular ALS websites. A computer will be set up in the exhibitor
room. A list of ALS websites will be available.
The conference runs from 12:00 to 4:00 p.m. but the volunteer only needs
to demonstrate from 12:00 to 1:00 p.m. and from 2:20 p.m. to 2:50 p.m.
If interested, contact Judy Teplow at the Dedham ALS office at 781-326-8884
or fax 781-326-4940.
(4)
=====
Mitch Albom to speak at College of Lake County
==========
Date : Tue, 10 Apr 2001
Subject: Mitch Albom to speak at College of Lake County
Mitch Albom, author of the #1 New York Times bestseller "Tuesdays with
Morrie", will be speaking at the College of Lake County in Grayslake, IL
on Tuesday, April 17 at 8:00 p.m.
Mitch Albom moves any audience he addresses. His book, a touchstone for
people of all ages yearning for meaning in their lives, was made into a
TV movie in 1999, produced by Oprah Winfrey. In the story, Albom
rekindles a friendship with former teacher and mentor Morrie Schwartz,
and learns how to live from a man about to die from ALS (Lou Gehrig's
disease). Albom will sign books immediately following his speech.
Tickets: $25.00 General Public; $24.00 CLC Students/Alumni/Seniors 65+
Call 847-543-2300 for tickets. Visa, MasterCard, Discover and American
Express are accepted.
The event is sponsored by:
College of Lake County
Mainstage Theatre
19351 West Washington Street
Grayslake, IL
Les Turner ALS Foundation
8142 N. Lawndale Avenue
Skokie, IL 60076-3322
Phone: 847-679-3311
Fax: 847-679-9109
www.lesturnerals.org
(5)
=====
re: ALS/Lyme
==========
Subject: ALS/Lyme
Date : Mon, 9 Apr 2001
1: Zh Nevropatol Psikhiatr Im S S Korsakova 1983;83(8):1173-9
[Structure of progressive forms of tick-borne encephalitis].
[Article in Russian]
Umanekii KG, Dekonenko EP.
On the basis of long-term follow up (from 2 to 22 years) of 175 patients
with various syndromes of progressive forms of tick-borne encephalitis
(TBE), evaluation criteria of TBE progression are systematized. Two basic
forms of disease progression are identified: amyotrophic and hyperkinetic,
each of them breaking down into a series of leading syndromes. Important
for characterizing progressive forms of tick-borne encephalitis (PFTBE)
are the time when the disease began to progress and the pattern of
progression as well as its stage and severity. PFTBE are correlated with
the acute period syndromes. In long-term follow-up, 68% of patients with
PFTBE display transformation of clinical forms of the disease, with the
formation of the lateral amyotrophic sclerosis syndrome in the
overwhelming majority of these patients.
PMID: 6414202 [PubMed - indexed for MEDLINE]
(6)
=====
ALS Memorial Candlelight Vigil
==========
Subject: ALS Memorial Candlelight Vigil and Healing Prayer Service
Date : Thu, 12 Apr 2001
Ride for Life NY 2001 - Montauk to Manhattan
April 28 - May 5
Ecumenical Memorial Candlelight Vigil and ALS Healing Prayer Service
Last year, a group of ALS patients, caregivers, and friends took part in
the first Ride for Life ALS Candlelight Vigil at the Lincoln Memorial in
Washington D.C. Everyone who attended agreed that it was a moving and
inspirational event, which also provided a sense of closure for many
families who had lost a loved one to ALS.
This year, Ride For Life is happy to announce another first; an
inspirational Ecumenical Memorial Candlelight Vigil and Healing Prayer
Service at St. Patrick's Cathedral in New York City on May 5th. Members
of all religious faiths are welcome to attend.
Nine clergy of the Christian and Jewish faiths will conduct these
interfaith services. This will be a fitting end to Ride for Life New
York 2001.
There will be wonderful music and song to compliment these very
inspirational services.
Voices of Long Island - An award winning gospel-singing group
The Choir of St. Louis De Monfort Church, Sound Beach, NY
Sword of Light - Bagpipers
Pam Cirasole - A classically trained soloist
Everyone is invited to attend these services, which we hope to make an
annual event. Please tell your family and friends. We would like to see
St. Patrick's Cathedral filled on May 5th.
The Ecumenical Memorial Candlelight Vigil will honor the memory of ALS
patients who have died. A relative or friend will read the name of a
deceased ALS patient, a candle will be lit in their memory, and a minute
of silence will be observed. 90 names will be read; these names are
symbolic of the fact that someone dies from ALS every 90 minutes.
If you are planning to be at St. Patrick's on May 5th and would like to
honor the memory of a deceased ALS patient, or if you have any questions,
call 631-261-6104.
If you are unable to attend but still wish to have the name of a deceased
ALS patient read and have a candle lit in their memory, Ride For Life will
provide a representative for you. Please include this request in you reply
to Larry.
Since only 90 memorial candles will be lit, a prompt response is suggested
to guarantee inclusion of your loved one. Those selected to participate at
St. Patrick's will be contacted.
Virtual Vigil
For those families not selected, due to limited numbers, or for those who
cannot attend, Ride for Life would still like to honor the memory of your
loved one lost to ALS.
Please send us the name of your loved one, along with the date of birth,
date of death, and city and state where they lived. Please email this
These names will be displayed in a book at the memorial service. A special
candle will be lit, and prayers offered to honor their memory.
Everyone attending the service in person will also have a last-minute
opportunity to add the name of a loved one to this book.
Healing Prayer Service
Following the Candlelight Vigil, there will be an ALS Healing Prayer
Service to help ALS patients cope with this deadly disease. The nine
interfaith clergy will also conduct this ecumenical service.
If you would like to participate in the healing service or have any
questions, please contact Christopher Pendergast by May 1st at
Important!
All candlelight vigil participants are requested to arrive at St.
Patrick's by 6:30 PM on Saturday, May 5, 2001. This is so we'll have
enough time to seat everyone and explain the procedures for the evening.
A handicapped ramp is located on the 51st side of St. Patrick's Cathedral
at 5th Ave. Please feel free to contact us with any special needs that
631-474-3035.
All people requiring handicapped parking will need a special permit.
631-261-6104.
For the general public, there are parking garages on 51st. and 53rd.
Street, between 5th and 6th Avenue.
For those of the Catholic faith, there will be a 5:30 Mass preceding the
ecumenical services. This mass is for the ALS community and the homily
will be given by Fr. Frank Pizzorelli, founder of Hope House Ministries.
This mass will fulfill your Sunday obligation.
Ride for Life would appreciate any donations to offset the expenses
related to these services.
For those families who will have a candle lit, but will not be attending,
Ride for Life will mail the candle to you, if requested. Please indicate
this when contacting us.
We sincerely believe that you will be moved by these special services and
hope that you will be able to attend.
Please go to http://www.***.com/
information.
About Ride for Life:
For the fourth year, Ride for Life, Inc. (www.rideforlife.com) is planning
another patient driven event to fight ALS. Called the Ride for Life, it
is conducted by patients who are battling an untreatable, incurable and
fatal disease with only their courage and determination.
For the last three years, ALS patients have bravely driven their electric
wheelchairs and scooters from Yankee Stadium to Washington DC.
This year, the patients will be taking a 160 mile ride from Long Island's
Montauk Point Lighthouse to St. Patrick's Cathedral in Manhattan, from
April 28 to May 5.
These patients are quite literally on a 'ride for life,' for their own
lives and for the lives 30,000 other Americans afflicted with ALS.
Without a medical miracle, they will face almost certain death from total
muscle paralysis.
The patients are riding to raise funds for ALS research and to provide
needed patients services. During the preceeding rides, the organization
has raised over $180,000 to fight ALS.
Ride for Life, Inc. is a not-for-profit 501(c)(3)organization founded by
ALS patients, caregivers and those who care about people living with ALS.
All of our board members and staff are volunteers and receive no money
for their work. All donations are tax deductible to the extent of the law.
For more information and to help, please visit our website at
http://www.***.com/
Thank you. Bob Cauttero Ride for Life
(7)
=====
Easy Lift
==========
Subject: entry
Date : Thu, 14 Sep 2000
Does anyone know where we can purchase an Easy Lift? The Hoyer lift is
difficult for my Mom to use. Please send responses to:
Mary Jeanne Mullen
(8)
=====
Sten Cell trial?
==========
Date : Mon, 09 Apr 2001
Subject: Re:
I would like to know how we can get someone signed up or put a waiting
list for the first clinic testing for ALS. I have a friend that has ALS
and is deteriorating fast. We are willing to send him anywhere for the
Stem Cell procedure, WE ONLY NEED TO KNOW IF AND WHERE., PLEASE Help us.
(9)
=====
ALS Awareness Month?
==========
Subject: ALS Awareness
Date : Sun, 8 Apr 2001
Is May still National ALS Awareness Month?
(10)
=====
Mechanism of Huntington's Disease Cellular Toxicity Revealed
==========
Date : Fri, 23 Mar 2001
Subject: Huntington's Disease
Mechanism of Huntington's Disease Cellular Toxicity Revealed
WESTPORT, CT (Reuters Health) Mar 22 - The abnormal huntingtin protein
of Huntington's disease causes cellular toxicity by interfering with
CREB binding protein (CBP)-activated gene transcription, according to a
report in the March 23rd issue of Science.
"Identification of this interference reaction may provide us a therapeutic
target," Dr. Christopher A. Ross told Reuters Health. "We can use the
knowledge to screen for {*filter*} that block the cytotoxic interaction."
"More broadly," Dr. Ross said, "this might represent a mechanism for other
neurodegenerative diseases, many of which involve protein aggregates that
don't seem to be toxic in and of themselves."
Dr. Ross, from Johns Hopkins University School of Medicine in Baltimore,
Maryland, and colleagues hypothesized that the expanded polyglutamine
sequences in huntingtin might interact with the shorter glutamine repeats
in CBP, thereby impeding its normal function.
In neuroblastoma cells cotransfected with huntingtin sequences containing
extended polyglutamine segments and CBP, the two proteins did, indeed,
collect into aggregates and CBP was redistributed away from its usual
nuclear location, the authors report. CBP without its usual contingent of
glutamines did not form aggregates with huntingtin.
Aggregates of CBP and huntingtin collected in brain tissue of huntingtin
transgenic mice and in postmortem brain tissue from patients who had
Huntington's disease, the researchers note. Moreover, huntingtin with
expanded polyglutamines significantly inhibited CBP-mediated transcription,
whereas huntingtin with a normal glutamine repeat had no such effect.
Overexpression of CBP or of CBP lacking extended glutamine sequences
abrogated the gene transcription-blocking effects and cytotoxicity of
huntingtin, the investigators report.
"Thus," they conclude, "polyglutamine-mediated interference with
CBP-activated gene transcription may constitute a genetic gain of
function, underlying the pathogenesis of polyglutamine disorders."
Science 2001;291:2423-2428.
(11)
=====
Seeking RN
==========
Date : Mon, 9 Apr 2001
Subject: Seeking RN
SEEKING RN
24 HRS. PER WEEK -FLEXIBLE SCHEDULE
The MA Chapter ALS Assoc. (Lou Gehrig's Disease) seeks an RN to
coordinate a Respite Program and help the Director of Patient Services
implement some other patient services. Prefer experience with home care,
neurological diseases and case management. Forward resume to: Judith
Teplow, ALS Association, 75 McNeil Way, Suite 201, Dedham, MA 02026
Tel: 781-326-8884 Fax: 781-326-4940
(12)
=====
Fort Myers area support group
==========
Date : Tue, 10 Apr 2001
Subject: Fort Myers area support group
Fort Myers, Florida area support group will meet Sunday April 22 at 2:30
in the afternoon. We meet at Cypress Lake United Methodist Church on the
corner of Cypress Lake Drive and Winkler Road in Fort Myers. Our
presenter will be Robert Calderon who will represent an equipment store
in Cape Coral. We also have plenty of time for sharing information on any
topic relating to ALS. Call (941) 936-2231 for further information.
Group meets on the fourth Sunday except for July and Dec.
(13)
=====
Acupuncture
==========
Date : Mon, 09 Apr 2001
Subject: Acupuncture
My father in law has ALS. We suggested Acupuncture a years ago. His
condition has improved. I want to know if the improvement was caused, in
part, by the Acupuncture treatment? Are there any other patients out there
who have also improved their ALS condition with Acupuncture?
Eli Elk, Ph.D.
(14)
=====
steroid query
==========
Subject: steroid query
Date : Sat, 11 Apr 92 2001
I'm curious if any ALS patients have experimented using the steroids
Andriol, Neurontin, or Permax (my suspect spelling), other than Creatine
as a way to gain weight or not to lose it, to retain muscle mass or what
muscle strength has not been lost. It seems to work for weight lifters.
As my doctor doesn't know, I thought I'd put the question to a wider world.
Thanks for any help.
=== end of alsd 835 ===
ALS Digest #835 (12 April 2001)