===============================================================
==
==
== ----------- ALS Interest Group
----------- ==
== ALS Digest
#975 (03 Janurary 2002)
==
==
==
== ------ Amyotrophic Lateral Sclerosis (ALS)
==
== ------ Motor Neurone Disease (MND)
==
== ------ Lou
Gehrig's disease
==
==
------ maladie de Charcot
==
==
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===============================================================
CONTENTS OF THIS ISSUE:
1 .. Gulf War Vets/Kelly
2 .. Special Episode of PAX TV's "DOC"
3 .. With Sadness ... Eric Lewis Pieper
4 .. re: Tangled Up - Bed Covers (ALSD963)
5 .. re: voice dictation
6 .. re: Indivamir
7 .. re: Voice Recognition Software
8 .. re: prayer (ALSD947)
9 .. PEG and nausea
(1)
=====
Gulf War Vets/Kelly
==========
>From: Aarupertus@aol.com
Date : Sat, 29 Dec 2001
We have seen the recent news that a high percentage of Gulf War Vets
have ALS-especially within the Air Force. We know there seems to be
a cluster at the Kelly Air Force in Texas. Regarding the posted
question about the status of Kelly Air Force Base, I also have a
question -- could there be any remote tie in with the Vets and the
112 people from Kelly who have/have had ALS?
It seems the potential tie is not being brought up or even negated.
Could those around certain air stations/bases be exposed to a common
environmental toxin or some toxin within specific jet fuel, weapons,
equipment, etc.? Is this being investigated? My father was a Naval
Aviator in Vietnam and died in 1991 of cancer as a result of Agent
Orange exposure. My mother Gail was diagnosed with sporadic ALS in
Jan. 2000 at age 58. She spent almost 10 years around the air stations
in Kingston, TX, Cherry Point, etc. I have wonder at the very least.
Does anyone know what the status of these investigations are? Are any
tie-ins being pursued? I think more updates would be helpful.
Amy Rupertus Peacock
(2)
=====
Special Episode of PAX TV's "DOC"
==========
>From: "Whitcomb, Laurel" LaurelWhitcomb@pax.net
Date : Thu, 3 Jan 2002
FOR IMMEDIATE RELEASE
December 26, 2001
Contacts:
Laurel Whitcomb, Sr. VP, Media Relations, (818) 487-2003
Sharyn Traub, Publicist, (212) 603-8492
STEVEN CURTIS CHAPMAN GUEST STARS IN "FEARLESS" -- SPECIAL 'DOC'
EPISODE
CONCERNING LOU GEHRIG'S DISEASE (ALS)
SUNDAY, FEBRUARY 17 ON PAX TV
(NEW YORK, NY)-PAX TV will present a special episode of the hit series
"Doc," starring Billy Ray Cyrus that focuses upon Lou Gehrig's disease
entitled "Fearless" to air Sunday, February 17 (8:00-9:00 p.m.,
ET/PT).
Guest-starring on this all-new episode is leading contemporary Christian
recording artist Steven Curtis Chapman, who portrays a musician whose
life is forever changed when he is diagnosed with amytrophic lateral
sclerosis (ALS), commonly referred to as Lou Gehrig's disease.
"Doc" writer Ernie Wallengren (who was recently diagnosed with Lou
Gehrig's disease -- a progressive neurodegenerative disease that
attacks nerve cells in the brain and spinal cord) collaborated on
"Fearless" with the show's creators, Dave Johnson and Gary Johnson.
The Johnsons were inspired by Ernie's determination to heighten
awareness of the disease and supported his decision to write a script
based on his experience.
"Ernie was diagnosed with Lou Gehrig's only six months ago and the
episode's title and theme are based on his courageous approach to
dealing with the disease," said Dave Johnson.
"I am amazed on a daily basis at how positively and elegantly Ernie
has chosen to deal with his diagnosis," Gary Johnson added. "It
is
extremely important to Ernie and the rest of the 'Doc' team to raise
consciousness of this illness for which there is still no cure.
'Doc' seemed to be the perfect vehicle to do that. And Ernie has
written a wonderful script that had us laughing out loud and sobbing
openly. For all of us at 'Doc,' this has really become a labor of
love for a man we love. Combine that with a tremendously moving
performance by Steven Curtis Chapman as the musician/music teacher who
is diagnosed with ALS and we have no doubt that this episode of 'Doc'
is a real winner."
"Fearless" Synopsis
Steven Curtis Chapman stars as Daniel Parson, Raul's (Tyler Posey
Garcia) band teacher who inspires his rag tag group of students,
including his own daughter Annie (Kelsie Tulk), to play "fearlessly"
as they strive for excellence. But Daniel must live out his own
advice when he receives an ominous medical diagnosis from Clint
(Billy Ray Cyrus). With help from Clint, Nate (Richard Leacock),
Beverly (Tracy Shreve) and his students, Daniel learns how to come to
terms with his disease. Meanwhile, Dr. Crane's (Ron Lea) college
rival arrives at the clinic to make Crane's life miserable yet again
when he installs an innovative software program that he created at the
clinic. And Clint and the clinic are sued for malpractice by a
clairvoyant who claims Clint robbed her of her psychic powers.
Steven Curtis Chapman
A Grammy Award-winning singer, Steven Curtis Chapman is one of
contemporary Christian music's most prominent performers. He was
already a fan and admirer of the series "Doc" when Dave Johnson
approached him about appearing in an episode. When the script for
"Fearless" was finished, Johnson knew this was the perfect role. In
"Fearless" Steven Curtis Chapman also performs his hit song "Lord
of
the Dance," and the final montage features a second Chapman song,
"I Will Be There."
Born and raised in Paducah, Kentucky, Chapman learned to play several
instruments while hanging around his father's music store, excelling
at guitar and piano. After enrolling as a pre-med student at Anderson
College in Indiana, he decided to pursue a music career in Nashville
and began performing at Opryland USA. Offstage, Chapman was busy
writing music when one of his tunes was recorded by the Imperials, a
prominent gospel group, marking the start of his success. Since then,
many of gospel and country's brightest stars have recorded his songs.
Chapman signed with major Christian music company Sparrow Records and
cut his first album, "First Hand" and the first single "Weak
Days"
made it to #2 on the contemporary Christian chart. Chapman's second
album, 1988's "Real Life Conversations," earned him four more hits,
including the number one song "His Eyes" co-written with James Isaac
Elliott. "His Eyes" went on to earn the Contemporary Recorded
Song of
the Year award from the Gospel Music Association in 1989 and that same
year, he won a GMA award for Best Songwriter of the Year. Chapman's
third album, "More to This Life," contained four #1 hits and in 1990
earned him an unprecedented ten nominations at the GMA Awards (he won
five). "For the Sake of the Call," his fourth album contained five
#1 singles, earned him another slew of GMA awards and his first Grammy
in the Best Pop Gospel Album category.
In 1992, Chapman made a successful bid to attract the mainstream
audience with the Grammy Award-winning album "The Great Adventure,"
which went gold in 1993. Also released in 1993 (both as a video and
CD), "The Live Adventure" won more GMA awards and earned Chapman
Songwriter and Artist of the Year from American Songwriter magazine.
Chapman released his seventh album, "Heaven in the Real World," in
1994 and embarked on a major tour. In 1996, he released "Sign of
Life," which was followed three years later by "Speechless."
His
most recent album, "Declaration," was released in September 2001.
"Doc" was created by Dave Alan Johnson and Gary R. Johnson
("Against
the Grain," "High Incident," "The Client," "Second
Noah" and PAX's
"Hope Island"). Marilyn Stonehouse produces for Pebblehut
Productions, a Muse Entertainment Company. "Fearless" was
written
by Ernie Wallengren.
About PAX TV:
Paxson Communications Corporation owns and operates the nation's
largest broadcast television station group and PAX TV, the family
friendly broadcast network. PAX reaches 84% of U.S. television
households via nationwide broadcast television, cable and satellite
distribution systems. Through the company's strategic relationship
with NBC, the two networks have shared programming, including the
dramatic series "Mysterious Ways," special PAX runs of original NBC
TV movies, sports programming and the hit quiz show, "Weakest Link."
PAX TV's fourth season lineup includes the original series "The
Ponderosa," "Ed McMahon's Next Big Star," "Candid
Camera" and "Doc"
starring Billy Ray Cyrus. For more information, visit PAX TV's
website at www.pax.tv.
- PAX -
For artwork, please go to www.paxpressroom.tv
or contact Jason
Hoffman at (818) 487-2037.
(3)
=====
With Sadness ... Eric Lewis Pieper
==========
>From: "Laurel Pieper" LaurelPieper@prodigy.net
Date : Sun, 16 Dec 2001
On December 15, 2001 my brother, Eric Lewis Pieper, lost his valiant
battle against ALS. He left this life at his home at the age of 38
years. Eric was diagnosed in 1997 with bulbar onset ALS.
He will be missed by his family and friends more than words can say.
I want to thank this list for the years of information and support it
has provided. Your very existence helps so many people. And I am most
grateful to you and the participants here.
Go in peace, Eric...
Laurel Pieper (sister)
(4)
=====
re: Tangled Up - Bed Covers (ALSD963)
==========
>From: "skelpin" skelpin@home.com
Date : Thu, 20 Dec 2001
Regarding tangled sheets:
I solved that problem with satin sheets. I use the top sheet as a draw
sheet. I wear satin nightgowns to slide the length of the bed and can
pull up in bed by grabbing the trapeze bar at the top of the head board.
If you have enough mobility to sit at the edge of the bed, satin sheets
may be too dangerous so buy a piece of satin or taffeta at the fabric
store and use as a sliding device or draw sheet. It works great. If you
have a hosp bed don't forget to take advantage of raising the foot of
the bed to help you slide up in bed. Good luck, Sheila Kelpin
(5)
=====
re: voice dictation
==========
>From: "Mark" markjwoods@earthlink.net
Date : Sun, 23 Dec 2001
I am actually dictating this letter using Dragon NaturallySpeaking
version 5.
I have been around the technology for quite a while, but this is the
first time that I'll be using it in full-time!
My computer is also fairly fast, with 512 megs of RAM and a 450 MHz
processor.
If you have a "fairly regular voice" and enough computer power to run
the program I would highly suggest grabbing a copy of Dragon
NaturallySpeaking!
God bless you richly and have a great year, Mark
(6)
=====
re: Indivamir
==========
Date : Wed, 26 Dec 2001
>From: "Elizabeth H." betsyh@lms.kent.edu
Linda,
Is it possible you mean Indinavir? I couldn't find anything doing
a search under your term but when I added the word "drug" after it,
Google suggested "Indinavir" instead. The first web site (of
many)
I found for that was this one for a drug used in HIV treatment, also
known as Crixivan:
http://www.thebody.com/hivatis/factsheets/indinavir.html
Here's another:
http://www.aidsinfonyc.org/network/access/drugs/indi.html
Merck produces it. The above sites provide basic info. If Indinavir
is the one you meant, check the links at the bottom of the pages for
contact information and so forth. I don't know anything about the
drug myself.
I got a lot of German language sites using "Indinavir" and "ALS",
but
here are a couple sites with information about Indinavir and ALS in
English that I found:
http://www.alsa.org/news/news092801.cfm
http://database.azstarnet.com/html/mda/transcripts/20011024ALS-
Conference.html
Hope this helps. Betsy
(7)
=====
re: Voice Recognition Software
==========
>From: "Sam Acree" sacree@tampabay.rr.com
Date : Wed, 26 Dec 2001
Frank,
This is written with Dragon NaturallySpeaking professional.
1. You probably don't need Dragon NaturallySpeaking professional. I got
it quite by accident (it's a long story). The latest Dragon
NaturallySpeaking (5.0?) has the same speech engine as the professional
version. Since Dragon Systems was sold to L&H support has deteriorated
significantly.
2. Although I have no experience with it, I think the latest ratings and
give ViaVoice the edge. I don't know anything about their support.
I'm pretty satisfied with what I've got. It's been my experience is that
a good USB is the real key. I have a USB headset made by Plantronics
(about $140). It works much better than the USB microphones that
typically come with the software. The microphone has good noise canceling
characteristics and is not sensitive about placement on your head. Your
sound card is completely unused. You can use your speakers but you have
to switch off the headset software.
Another key is having a very fast processor (CPU) -- the faster the
better.
If you can find people or some way to compare the two, I'd suggest doing
that.
I'm in much the same condition as you are except that my arms and hands
started first. I was also diagnosed 9/2000 at Shands (University of
Florida).
Good luck in God bless. Sam Acree
(8)
=====
re: prayer (ALSD947)
==========
Date : Thu, 27 Dec 2001
>From: Wayne Phillips wsphillips@compuserve.com
Loris brought up the idea of focusing on prayer. Here's a note I recently
sent to my friends.
----
Dear friends,
This December marks the start of my 14th year with ALS, and many of you
have been praying for my healing for more than a decade. A real cure for
ALS means both stopping whatever is killing neurons and replacing dead
neurons with new ones.
Through providential leads last year, it seemed likely that an infection
caused or contributed to my illness. I began taking the appropriate
antibiotics, and they did seem to halt the progress of my illness. It's
too harsh on my body to take them constantly, so I've been on and off
them over the last year. I'm a little weaker than a year ago, but I
attribute that to the time off the antibiotics. So thank you for praying;
this much has been answered. Please pray that I can find the right
combination of antibiotic cycles and immune strengthening supplements
to keep it stopped.
At the time of my onset medical dogma held that neurons couldn't regrow.
Since then it's been discovered that stem cells can turn into neurons,
and that when injected into the fluid around the brain and spinal cord
they somehow migrate to damaged areas. I think that these advances are
a result of your prayers and the prayers of others for other ALS
patients. Stem cells can benefit people with many conditions besides
ALS. Most of the people at the hospital unit where I live have had
strokes or other neurological damage.
Human embroys are one source of stem cells, but there are many other
sources such as umbilical cords, bone marrow, and skin that don't involve
human sacrifice. The technical problem facing researchers now is finding
the best cells to use, "best" meaning that they turn into the right
kind
of cells, make the proper connections with other cells, and don't do
damage of some kind.
I encourage you to join me in praying for wisdom and insight for medical
researchers, that they would quickly find these best cells, from a moral
source, and that the process for growing them will be simple and
inexpensive. God holds all mysteries in His hands and does reveal them to
men, so let's seek compassion from the God of heaven.
Wayne
Mat 7:7-11 (NASB) "Ask, and it shall be given to you; seek, and you shall
find; knock, and it shall be opened to you. {8} "For everyone who asks
receives, and he who seeks finds, and to him who knocks it shall be
opened. {9} "Or what man is there among you, when his son shall ask him
for a loaf, will give him a stone? {10} "Or if he shall ask for a fish,
he will not give him a snake, will he? {11} "If you then, being evil,
know how to give good gifts to your children, how much more shall your
Father who is in heaven give what is good to those who ask Him!
Dan 2:17-22 (NASB) Then Daniel went to his house and informed his friends,
Hananiah, Mishael and Azariah, about the matter, {18} in order that they
might request compassion from the God of heaven concerning this mystery....
{19} Then the mystery was revealed.... Then Daniel blessed the God of
heaven; {20} Daniel answered and said, "Let the name of God be blessed
forever and ever, For wisdom and power belong to Him. {21} "And it is He
who changes the times and the epochs; He removes kings and establishes
kings; He gives wisdom to wise men, And knowledge to men of understanding.
{22} "It is He who reveals the profound and hidden things; He knows what
is in the darkness, And the light dwells with Him.
(9)
=====
PEG and nausea
==========
>From: murthy1@webtv.net (Nalluru
Murthy)
Date : Tue, 1 Jan 2002
My wife has nauseating sensation after every meal. She has a PEG Tube.
For over 18 months she was taking the formula like ensure in cans. She
started feeling nausea and we started her on home cooked food which is
pureed and given. This was going OK for 1 year and now she is having
problems again. Does anyone know anything that can help her?. Thank you
=== end of alsd 975 ===