===============================================================
==
==
== ----------- ALS Interest Group
----------- ==
== ALS
Digest #981 (18 January 2002)
==
==
==
== ------ 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== not peer reviewed.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:
==
== bro@met.fsu.edu (Bob Broedel)
==
==
==
== Bob Broedel; P.O. Box 20049; Tallahassee, FL 32316 USA ==
===============================================================
== Back issues of the ALS Digest are available on-line at: ==
== http://www.glnicholas.com/
==
== http://www.alslinks.com
==
== http://cc4144-a.ensch1.ov.nl.home.com/~digest
==
== http://health.oldeman.net
==
===============================================================
CONTENTS OF THIS ISSUE:
1 .. e-mail
2 .. Cardioversion and ALS
3 .. ALS Caregivers invited to Participate
4 .. lawsuits
5 .. looking for work
6 .. Corticospinal tract degeneration and extramotor involvement
in ALS
7 .. Vasoactive intestinal peptide influences neurite outgrowth
in cultured rat spinal cord neurons
8 .. lawsuits
9 .. Bowel Obstruction
10 . re: PEG tube questions
11 . Emotional effects (ALSD933)
(1)
=====
e-mail
==========
>From: "Annette Cooper" acooper27@houston.rr.com
Date : Tue, 15 Jan 2002
Please let me know if there are people that would like to communicate
with an ALS patient. acooper27@houston.rr.com
(2)
=====
Cardioversion and ALS
==========
>From: "RUDOLPH, STEVE P" steve.p.rudolph@monsanto.com
Date : Wed, 16 Jan 2002
Cardioversion and familial ALS
I have a question which I haven't been able to get much information on.
My Mother and her only sibling (my Aunt) died of ALS. We were able to
find out (through the Dr. Siddique at Northwestern University) that my
Aunt was not affected by the SOD-1 gene mutation (causing familial ALS).
So we are in the 80% of familial cases which have unknown causes.
I am a 42 year old male who is now experiencing atrial fibrillation. The
cardiologist is recommending cardioversion in an effort to restore a
natural heart rhythm.
My question: Is there any known linkage between electrical shocks (to
the body - cardioversion) and the possible onset of ALS? I am very
leery to undergo this procedure knowing that ALS involves motor neurons
mystically dying and the electrical shock used in cardioversion cannot
be isolated to just the heart.
Are my fears justified? Does anyone know if there is any relevant data
which indicates a linkage between electrical shock and ALS??
Thank you. steve rudolph (sprudo@iname.com)
(3)
=====
ALS Caregivers Invited to Participate
==========
Date : Fri, 18 Jan 2002
>From: "Suzanne Candell" cand0002@tc.umn.edu
ALS Caregivers Invited to Participate in Online Study.
If you're an adult who provides care for a loved one with ALS, you're
invited to be in a study of how journal writing relates to emotional
and physical well-being in caregivers. The researcher is a licensed
psychologist in Minnesota completing her doctorate in Psychology at
the University of Minnesota. Her interest in ALS caregiver well-being
stems from her personal experience as a family member of a PALS.
For complete information on the study, go to:
http://www.personalityscience.org/csh/PSO.nsf/home
and click the ALS
Caregiver Study link.
Please feel free to contact me at cand0002@umn.edu.
with any questions
you may have.
Thank you!
Suzanne Candell, MEq
Licensed Psychologist (MN3830)
(4)
=====
lawsuits
==========
>From: POLYSMITTY@aol.com
Date : Wed, 16 Jan 2002
IN RESPONSE TO THE LETTER ON 1-15-02 ON LAWSUITS WITH ALS PATIENTS. MY
BROTHER-IN-LAW WAS DIAGNOSED WITH A STROKE IN MARCH OF 2001. HE STARTED
WITH WEAKNESS OF HIS LEFT HAND AND SLURRED SPEECH. HE WAS SENT HOME WITH
NO PHYSICAL THERAPY AND NOT MUCH FOLLOW-UP. HIS SYMPTOMS WORSENED WITH
HIS SPEECH, SWALLOWING AND MUSCLE WEAKNESS. HE SAW FIVE DOCTORS. WHEN
HE SAW THE FIFTH DOCTOR AND COMPLAINED ABOUT ALL THE CHOKING AND LARGE
AMOUNT OF SALIVA IN HIS THROAT, THE DOCTORS RESPONSE WAS "OH, GROSS",
AND DID NOTHING AT THAT TIME TO FIND OUT WHY THIS MAN WAS DETERIORATING.
FINALLY NINE MONTHS LATER HE HAD AN EMG THAT CONFIRMED THE ALS DIAGNOSES.
IF YOU LOOK AT ALL THE SYMPTOMS OF ALS, HE HAD ALL OF THEM VERY EARLY IN
THE DISEASE. HE HAS THE BULBAR FORM. EVEN AFTER HE WAS DIAGNOSED THE
DOCTOR DID NOT REFER HIM TO A DOCTOR THAT SPECIALIZES IN ALS AND HE DID
NOT GET THE TREATMENT THAT IS OFFERED TO ALS PATIENTS. SO DON'T BE SO
HARD ON THESE PEOPLE WITH THIS HORRIBLE DISEASE. SOME OF THEM DID NOT
RECEIVE THE PROPER CARE. GOD BLESS
(5)
=====
looking for work
==========
>From: "jennick" ndurant@mediaone.net
Date : Tue, 15 Jan 2002
PCA looking for work in areas ranging from Boston to Taunton. I have
experience with all ADL's (from max to min assist) and machine and
manual transfers. I have a BS in Health Sciences and am currently
applying to schools for nursing. I am presently caring for a woman
with Multiple Sclerosis who is completely dependent. I am a competent,
positive girl with a fun loving personality. Will supply references
upon request. Please call Jen at (508) 823-2703.
(6)
=====
Corticospinal tract degeneration and extramotor involvement in ALS
==========
>From: whubben@als-tdf.org
Date : Mon, 07 Jan 2002
Volumetric analysis reveals corticospinal tract degeneration and
extramotor involvement in ALS.
Source : Neurology 2001 Nov 13;57(9):1571-8
Author(s): Ellis CM, Suckling J, Amaro E Jr, Bullmore ET, Simmons A,
: Williams SC, Leigh PN.
Institute: Department of Neurology, Guy's, Kings & St. Thomas' School of
: Medicine and Dentistry,
London, UK. c.ellis@iop.kcl.ac.uk
Published: 11/13/2001
Abstract:
BACKGROUND: Pathologic changes in the motor cortex and corticospinal
tracts in ALS may be reflected by abnormal signal intensities on
conventional MRI. The sensitivity of these changes in detecting
underlying pathology remains unclear. METHOD: The authors used
automated image analysis to quantify volumes of cerebral gray and
white matter in 16 patients with ALS (eight limb onset, eight bulbar
onset) and eight normal controls. Previously they had demonstrated a
reduction in N-acetyl aspartate/creatine + phosphocreatine
(NAA/[Cr + PCr]) measured by (1)H-MRS in the subcortical white matter
in the motor cortex region in the patients with bulbar-onset ALS. To
determine whether this resulted from axonal degeneration, they also
compared gray and white matter volumes in the patients with limb- and
bulbar-onset ALS. RESULTS: There were no differences in the total brain
volumes of gray or white matter for the three subject groups (p > 0.23).
Comparison of the total ALS group and controls revealed localized
deficits in gray matter volume centered on Brodmann areas 8, 9, and 10
bilaterally. Comparison of the patients with limb- and bulbar-onset ALS
revealed deficits in the white matter volume in the bulbar-onset group,
extending bilaterally from the precentral gyrus into the internal
capsule and brainstem, consistent with the course of the corticospinal
tract. There was no loss in gray matter volume in the precentral gyri.
CONCLUSIONS: The loss of gray matter in the frontal regions (total ALS
group) provides further support that ALS is a multisystem disorder. In
addition, there is in vivo evidence of axonal degeneration in the
subcortical white matter in the motor region in patients with
bulbar-onset ALS. This is consistent with a "dying back" process
affecting cortical motoneurons in bulbar-onset ALS.
Abstract Archived at: http://www.als-tdf.org/alstdf/research/hubben/
viewarticle.asp?id_article=258
PubMedID: 11706094
PubMed Link: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=
Retrieve&db=PubMed&list_uids=11706094&dopt=Abstract
Will Hubben whubben@als-tdf.org
(7)
=====
Vasoactive intestinal peptide influences neurite outgrowth in cultured
rat spinal cord neurons
==========
>From: whubben@als-tdf.org
Date : Mon, 07 Jan 2002
Vasoactive intestinal peptide influences neurite outgrowth in cultured
rat spinal cord neurons.
Source : Neurol Res 2001 Dec;23(8):851-4
Author(s): Iwasaki Y, Ikeda K, Ichikawa Y, Igarashi O.
Institute: The Fourth Department of Internal Medicine, Toho University
: Ohashi Hospital, Tokyo,
Japan. yaso@med.toho-u.ac.jp
Published: 12/1/2001
Abstract:
Vasoactive intestinal peptide (VIP) is a neuropeptide which has been
shown to exhibit a wide range of neurotrophic effects both in vivo and
in vitro. For the purpose of clarifying the effect of VIP on spinal
cord neurons, we studied the effect of VIP on neurite outgrowth of
fetal rat ventral and dorsal portions of spinal cord in cultures.
VIP-treated ventral spinal cord cultures (VSCC), compared with control
VSCC, had a significant neurite outgrowth at 10(-8), 10(-6), and
10(-4) M. The effect was considered to be concentration dependent.
Morphological changes of the dorsal spinal cord cultures (DSCC)
remained unchanged by VIP treatment. Because of their close sequence
homology with VIP, PHI-27 (peptide, histidylisoleucine amide) and
secretin were also examined with the same experimental conditions as
was VIP. Both PHI-27 and secretin had neurite promoting effects in
VSCC at 10(-8) and 10(-6) M, respectively. However, there were no
neurite promoting effects in DSCC in both of them at any
concentrations. VIP had the most potent effect on neurite outgrowth
in VSCC, followed by PHI-27, and secretin in their effectiveness
concentrations. Our data showing VIP, PHI-27 and secretin have
neurotrophic action on VSCC and suggest that a potential therapeutic
use of VIP and its related peptides in treating diseases that involve
degeneration and death of spinal motor neurons, such as motor
neuropathy and amyotrophic lateral sclerosis.
Abstract Archived at: http://www.als-tdf.org/alstdf/research/hubben/
viewarticle.asp?id_article=257
PubMedID: 11760877
PubMed Link: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=
Retrieve&db=PubMed&list_uids=11760877&dopt=Abstract
Will Hubben whubben@als-tdf.org
(8)
=====
lawsuits
==========
Date : Wed, 16 Jan 2002
>From: PAUL S TROYANEK bossjo@juno.com
To Medico from bossjo. Let me tell you how much your letter disgusts me.
When we were talking with this neurologist she came to the comclusion
that Paul had ALS. She just didn't inform our family about it. She wrote
in the med records with suspicion. Then took this suspicion to her peers
when they met for their weekly meeting but no one would come to her
conclusion. Then let this man believe it was only a stroke heve this
operation and made him believe he was 100% better. I believe this Dr.
should have informed us and then sent us to a specialist. He could have
been on a blood thinner instead of having open heart surgery, When I
asked the cardiologist if he had consulted with the neuologist about
suspicion of ALs which was in his records he said no he didn't read them.
What does that say about these two Dr.s. We go to the Dr. for help. One
more test would have proved he had ALS. Why didn't she go thru with it
if she had her suspicion. That one month did make a difference to our
family she gave our family back saying he would be better after his
heart was repaired only to turn around and give him a death sentence.
You try telling that to a ten year old child. Why would you think a
lawsuit would excite someone? Get all the facts first Medico before
you start raising h. You sound like you've been sued.
(9)
=====
Bowel Obstruction
==========
>From: "Jeff Ferrer" Jeff.Ferrer@sarvisinc.com
Date : Tue, 15 Jan 2002
I wanted to take a moment to thank everyone in this group and
especially the people who took the time to respond to my email about
my mother's small bowel obstruction. My mother lost her 6 year battle
with ALS last week as a result of her small bowel obstruction. She had
a strong will to live even up until the end of her life on this earth.
I will continue to pray for a cure for ALS even though it did not come
in time for Mary (my mom). I want to also thank everyone in this group
for providing support and information in the face of such a challenging
disease. Thank you all.
(10)
=====
re: PEG tube questions
==========
Date : Tue, 15 Jan 2002
>From: Wayne Phillips wsphillips@compuserve.com
Hi Victoria,
I saw your note in the Digest requesting info on PEGs. It helps to think
of the g-tube as a tool to make life easier instead of giving in to the
illness. All PALS I've talked with (and me) wish we'd gotten a g-tube
sooner. It makes getting enough nutrition and fluids so much easier, and
eliminates 2 hour meals with gagging and choking just to get minimal
nutrition. You may want to read over the info on the proceedure and PALS'
experiences on my site:
http://www.geocities.com/HotSprings/Falls/7437/ftube.htm
The person who answered in the Digest after your question mentioned the
"McKey" tube. That should be "MIC-KEY", made by Ballard. See
http://www.bmed.com for more info. I have one
and highly recommend them.
good luck, Wayne
(11)
=====
re: Emotional effects (ALSD933)
==========
Date : Tue, 23 Oct 2001
>From: "Elizabeth H." betsyh@lms.kent.edu
Hi, Carol,
I had read your original post to the digest and some of the subsequent
responses to it. When I read those comments, I sympathized totally with
your position and experiences with ALS, doctors, your husband and the
emotional impact. I apologize for not responding earlier in support.
I'm not sure why I didn't at the time, but I want to rectify that now.
My husband too has ALS and is progressing pretty quickly. You mention
the lack of help from your ALS clinic. We too do not feel we received
very much information on what to expect nor help with equipment or day
to day problems from our clinic either. It was always us finding out
things and then lobbying them and waiting for the staff or neurologist
to get around to doing something.
With everything else, why did WE have to pressure them to act? We did
not opt for any trials and I will always wonder how not being in
anything like that effected my husband's care. When we visited there
(an arduous journey) it always felt like they were assessing him for
inclusion in their statistics or reports or something and not looking
at him as someone who needed active help. They didn't even make any
attempt at accommodating my husband's comfort during his checkups. We
would sit for hours upon hours in a small examining room while all the
ALS "team" trouped in and out to look at him.
The local ALS Assn also seemed to drop out of sight after we stopped
visiting the clinic. They weren't very equipped with much practical
info. Their biggest help was in getting us equipment. I don't want to
trivialize the help that provided, because it saved us a LOT of time
and money and grief. Initially they also provided me with a willing
ear for me too. I'm grateful for that.
Like you, the problem with insurance provision and time delays has been
an ongoing frustration. I consider the lack of recognition by insurers
as to the uniqueness of this illness to border upon criminal. There
really needs to be a recognition that the usual bureaucracy with ALS
patients is not realistic. It does save the insurance co. money which
I fully believe is the goal. We cancelled some expensive alterations
to my husband's wheelchair recently because by the time they were even
ready to *approve* them, he was already past being able to use them.
I was very, very lucky in that my husband accepted his DX from the
start and faced it with both courage and practicality. *Much* better
than I did then, by the way. He did all his own research on his
wheelchair and communication devices. By the time I got a speech
therapist from the clinic to visit us (doing that on my own recently),
she said he could teach her things.
Well, I'm not going to go into the litany of our experience here. I
just want to say that each PAL's situation is different, both
medically, financially and emotionally. Each caregiver is in a unique
position depending upon how their PAL copes and how much support they
get from family, co-workers and friends.
While people with experience with ALS can offer advice and support, in
the end it is the PAL and his caregiver who carry the burden of their
situation. I don't question any of your decisions, Carol, or your
husband's, or how you coped then or now. I think what you said in your
original post needed to be said. Even though I know that belief systems,
and active boosterism get many, if not most people thru this, I don't
believe that squelching real life experience such as yours does any
good.
Right here I'd like to say that, in my opinion, the single most valuable
drug my husband takes is Zoloft. Without it, I think he would either be
dead or much closer to death by now. I know that he would have given
up on his communication efforts. In my opinion, ameliorating depression
is the first line of defense with this disease. I know I'll probably
get a lot of flack about that from the "natural meds" and "take
us as
we are" folk. To be frank, sometimes I wonder about some of those
peoples' motives.
Okay, I'll stop now. Just know that there are a lot of people on this
list who I'm sure know exactly where you are coming from and do not
agree with those who've criticized you. I hope more of them contact you
and tell you so. I hope what I've said (laboriously) helps in some form.
Sincerely, Betsy Hagan
=== end of alsd 981 ===