===============================================================
== ==
== ----------- ALS Interest Group ----------- ==
== ALS Digest #842 (24 April 2001) ==
== ==
== ------ Amyotrophic Lateral Sclerosis (ALS) ==
== ------ Motor Neurone Disease (MND) ==
== ------ Lou Gehrig's disease ==
== ------ maladie de Charcot ==
== ==
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===============================================================
CONTENTS OF THIS ISSUE:
1 .. Alternative Treatments
2 .. mercury and neurons (ALSD 828, 841)
3 .. re: ALS and Lymes? (ALSD835, 840)
4 .. MRI and proton MR spectroscopy in diagnosis of ALS
5 .. PLS - Primary lateral sclerosis: further clarification
6 .. re: Injectable Glutathione (ALSD840)
7 .. medical equipment
8 .. keyboard
9 .. cushion
10 . meetings in Canada
11 . Medicare funding of adaptive equipment
12 . Vegan Diet
13 . Getting together on June 24 for prayer
14 . re: gamma globulin
15 . ALS Diagnosis of your husband (ALSD815)
16 . for sale
17 . re: communication devices
(1)
=====
Alternative Treatments
==========
Subject: Alternative Treatments
Date : Thu, 19 Apr 2001
Greetings,
My name is John Paine, I reside in Dallas Texas, and was diagnosed with
ALS September 22, 2000. Dehabilitating symptoms are progressing rapidly.
I am presently involved with everything that conventional western
medicine has recommended for treatment. I am being treated at the UT
Southwestern Medical school.
I am seeking alternative treatments. I have been introduced to two
alternative methods. One is by Dr. Renee Espy from Wolpol, Massachusets,
just out of Boston. Her specialty is applied kneiselogoy. Her treatment
process involves micro current resident frequencies and re-supplying the
body with essential fatty acids. The second is Douglas Leber, located in
Grapevine, Texas, who diagnoses illness with a Computron machine and then
recommends various natural remedies, herbs and diet plans.
Has anyone had experience with either of these applications or either of
these practitioners? Both treatment methods are expensive. It is so
difficult to validate the accuracy of alternative treatment claims and I
would greatly appreciate anyone's personal knowledge relative to these
practitioners or these treatment methods.
soon as possible if you can help. Thanks to all in advance.
Best, John Paine
(2)
=====
re: mercury and neurons (ALSD 828, 841)
==========
Date : Sat, 21 Apr 2001
Subject:
Quote:
>B Windham writes:
>People can decide for themselves if the study is relevant to ALS since I
>gave info on how to access it, and also whether the full documentation of
>about 50 medical studies that make the case that mercury causes the type
>of damage seen in ALS makes a strong case. Full papers can be obtained
>from Medline in most cases(www.nlm.nih.gov).
The mercury matter is again raised. Many heavy metals are neurotoxins
(and kidney toxins, {*filter*} cell toxins, etc.) Readers will recall that
there is no credible evidence that removal of mercury sources, including
amalgam fillings, has any effect on the progression of ALS. That is
largely because ALS is not likely caused by or aggravated by mercury, but
also because the exposure to mercury from fillings is miniscule and well
withing safe limits.
Thus the mercury matter is moot. More important is the hold on stem cell
research by the HHS. ALS people and families would be wise to object
vigorously to both the White House and to HHS.
WSampson MD
(3)
=====
re: ALS and Lymes? (ALSD835, 840)
==========
Date : Sat, 21 Apr 2001
Subject:
Quote:
>Do neurologist have a proven higher rate of cures with Lyme Disease than
>other types of doctors or practitioners? B. windham
Neurologists are more likely to be able to diagnose ALS reliably and to
tell the difference between ALS and Lyme than other medical specialists -
perhaps with the opinion of an infectious disease specialist. That was
the point of the comment.
WSampsonMD
(4)
=====
MRI and proton MR spectroscopy in diagnosis of ALS
==========
Date : Sun, 22 Apr 2001
Subject: MRI and proton MR spectroscopy in diagnosis of ALS
Magnetic resonance imaging and 1H-magnetic resonance spectroscopy in
amyotrophic lateral sclerosis.
Sarchielli P, Pelliccioli GP, Tarducci R, Chiarini P, Presciutti O,
Gobbi G, Gallai V.
Neurological Clinic, Policlinico Monte Luce, Perugia, Italy.
We aimed to increase confidence in the combined use of MRI and proton MR
spectroscopy (1H-MRS) in diagnosis of amyotrophic lateral sclerosis (ALS).
We investigated 12 patients with ALS, seven definite and five probable,
taking into account clinical measures of motor neuron function. On
T2-weighted images we found high signal in the corticospinal tract in six
and low signal in the primary motor cortex in seven of the 12 patients.
Atrophy of the precentral gyrus was apparent in all the patients apart
from one with probable ALS. Absolute quantification of cerebral
metabolites using 1H-MRS demonstrated a significantly lower mean
concentration of N-acetylaspartate (NAA) in the precentral gyrus of
patients with probable and definite ALS (8.5 +/- 0.62) than in control
subjects (10.4 +/- 0.71; P < 0.001). NAA concentration in primary motor
cortex correlated with Norris scale scores (r = 0.30; P < 0.0001) but not
with the ALS Functional Rating Scale score or disease duration.
Significantly lower levels of NAA were detected in patients with low
signal in the motor cortex than in those without (P < 0.01). Mean choline
(Cho) and creatine (Cr) values did not differ between patients with ALS
and controls.
PMID: 11305749 [PubMed - in process]
(5)
=====
PLS - Primary lateral sclerosis: further clarification
==========
Date : Sun, 22 Apr 2001
Subject: (PLS) Primary lateral sclerosis: further clarification
Primary lateral sclerosis: further clarification.
Le Forestier N, Maisonobe T, Spelle L, Lesort A, Salachas F, Lacomblez L,
Samson Y, Bouche P, Meininger V.
Federation de Neurologie Mazarin Professeurs Delattre et Meininger,
Hopital de la Salpetriere, 47 Boulevard de l'Hopital, 75013, Paris,
France
Primary lateral sclerosis (PLS) has been defined as a rare. Non-hereditary
disease characterized by progressive spinobulbar spasticity, related to
the exclusive involvement of precentral pyramidal neurons, with secondary
pyramidal tract degeneration and a preservation of anterior horn motor
neurons, the latter allowing PLS to be distinguish from amyotrophic
lateral sclerosis (ALS). However, a clear distinction between the two
diseases remains a subject of debate. With this in mind, we assessed
patients with meeting the previously published criteria for PLS in a
prospective, longitudinal study. At regular intervals, we analyzed
various clinical and electrophysiological parameters in nine patients
with a diagnosis of PLS. We made a deltoid muscle biopsy and pet study.
Our results provide evidence that degeneration in PLS is not restricted
to the upper motor neurons but also affects the lower motor neurons. The
distinction between ALS and PLS is related to the degree and stability
of lower motor neuron involvement. In view of the similarities with ALS,
we consider that PLS may represent a slowly progressive syndrome closely
related to this disease.
PMID: 11311289 [PubMed - as supplied by publisher]
(6)
=====
re: Injectable Glutathione (ALSD840)
==========
Date : Thu, 19 Apr 2001
Subject: Re:
I use injectable Glutathione. It is prescribed for me by Dr. David
Perlmutter in Naples, FL His phone # is 941-649-7400. It is supplied
by Wellness Health Pharmaceuticals in Birmingham,AL (800-227-2627,
208-879-6551) Terry Ternet
(7)
=====
medical equipment
==========
Subject: medical equipment
Date : Mon, 23 Apr 2001
My husband of 18 years, Rick, got promoted last August and went to heaven
after a very inspiring fight with ALS. I live in the North Florida/South
Georgia area and have some medical equipment I would like to donate to any
one with a need, especially a financial one.
Some of the things include: 15 cases of Osmolite HN (expires July/Aug2001),
enteral feeding bags, male external {*filter*} catheters, trache cleaning and
care kits, suction catheter kits, individual suction catheters, humidifier
tubing, and much more.
These larger items, I would like to sell.
EZ pivot lift model EP-85, used twice. Retail is $1395. Asking $600.
Arrow Action Storm Series electric wheelchair with Tarsys system (head
controls, tilt, recline, electric legs, Roho cushion) $18,000, asking
$10,000. Never used.
If you are interested in any of these items, please contact me at
God bless you. Dee Stemrich
(8)
=====
keyboard
==========
Subject: keyboard
Date : Tue, 17 Apr 2001
I'm looking for a small keyboard (abt 170 X100) to drive my PC.
Me?: French PALS since 86, fingers and wrist OK, but not elbow and
shoulder; cannot use magnetic pen to activate keys
(9)
=====
cushion
==========
Date : Wed, 18 Apr 2001
Subject: Re:
My name is Kelli and I am trying to help Bill C. find the best type of
cushion we can for him. He generally sits in a office type chair that is
20 " wide by 19 " deep. We have looked up at least a jillion of these
cushions and can't really decside which seems best...can anyone tell us
if there are any recommended types for ALS. WE would love to hear the
opinions of other ALSers who might have recommendations. We are
considering comfort as well as quality. Let us know a.s.a.p THANX
(10)
=====
meetings in Canada
==========
Date : Wed, 18 Apr 2001
Subject: Meeting for the Castlegar, Creston, Nelson, Trail & Salmo,
: B.C. Areas
THE NEXT MEETING FOR PALS, CALS AND SUPPORTERS OF THE CASTLEGAR, CRESTON,
NELSON, TRAIL AND SALMO, B.C., CANADA, WILL BE HELD AT THE GRIFFITH'S
RESIDENCE, 511 SIXTH STREET, SALMO, B.C. CANADA, ON THURSDAY APRIL 26TH
AT 1:30 PM. EVERYONE WELCOME. PHONE 250 357 2002
(11)
=====
Medicare funding of adaptive equipment
==========
Date : Fri, 20 Apr 2001
Subject: Medicare funding of adaptive equipment
I received this from my speech pathologist, Lynn Fox, about Medicare
funding
adaptive equipment
I don't know if you and the other people with whom you communicate are
aware that Medicare will now pay for software and for access technology,
such as Tracker, etc. Medicare funding became effective in January of
this year. The funding process requires an evaluation by a Speech-Language
Pathologist. The SLP writes a justification for the necessary equipment,
obtains a prescription from the person's physician, and submits a claim to
the vendor of the equipment. The vendor issues the equipment directly to
the person, and is reimbursed by Medicare for 80% of the the agreed-upon
cost. If someone has supplemental insurance, that company will be billed
for the deductable.
Although any Speech-Language Pathologist can write a justification, I would
suggest that people be evaluated by centers with expertise in technology
assessment. One of the centers in Oregon is Dr. Fried-Oken's Assistive
Technology Center at Oregon Health Sciences University.
(12)
=====
Vegan Diet
==========
Date : Tue, 24 Apr 2001
Subject: VEGAN DIET
WE ARE INVESTIGATING THE EFFECT OF DIET ON GLUTAMATE.
1. HAS ANYONE BEEN ON A VEGAN DIET LONG TERM BEFORE ONSET OF ALS?
2. HAS ANYONE GONE ON A VEGETARIAN DIET AFTER ALS DIAGNOSIS AND OBSERVED
ANY IMPROVEMENT IN STRENGTH OR OTHER SYMPTOMS?
WE WOULD LIKE COMMENTS FROM ANYONE. THANK YOU.
(13)
=====
Getting together on June 24 for prayer.
==========
Subject: Getting together on June 24 for prayer.
Date : Thu, 19 Apr 2001
This note is for a very special request. My father is an ALS patient. I
believe that science and medicine are key factors to to help this
devastating disease, but we sometimes forget that overall, regardless of
our pain and suffering there is our GOD who we need to pray to. Prayer is
a very strong medicine that has the power to accomplish good things.
Therefore, I am asking caregivers, the patients, physicians, family
members and anyone related to this disease, regardless of your religion.
Catholics, Baptists, Presbyterians, Jeovah Witness, Mormons, Jews etc. to
please get together in thought and meditation on June 24th at 10:00 am
eastern standard time. And lets all have a few minutes of silence and
pray to our GOD to aid us in the quest for answers on this disease. I
hope this could be accomplished and taken seriously like other quests
posted on the digest. Whoever can post this on the other als related
(14)
=====
re: gamma globulin
==========
Subject:
Date : Sat, 21 Apr 2001
GG Treatment.
Harry Gould has been keeping his posting on the community listings below.
I attached the following email received by Harry about GG treatment
Harry once again, thanks for keeping us all updated, you are a GOD sent
to us all..
Beverly
Brents little sis - from NC
CALS
http://www.***.com/
====
Dear Relatives and Friends,
I have received many inquiries about the treatment that I have been
receiving for my ALS condition. Below are two websites where I have
posted the info about the treatment. You can also view the comments
that I have received from the ALS community.
Harry Gould
http://www.***.com/
http://www.***.com/
ics&forum=3DALS&number=3D3&DaysPrune=3D10&LastLogin=3D
(15)
=====
ALS Diagnosis of your husband (ALSD815)
==========
Date : Mon, 05 Mar 2001
Subject: ALS Diagnosis of your husband
I noted in the recent ALS Digest #815 that you had some questions about
the diagnosis of ALS in your husband and the fact that he appears to be
atypical for an ALS patient. Often when the diagnosis is not
straightforward, there is likely something else going on. We have found
that atypical ALS patients are certainly the ones who have multiple
chronic bacterial and viral infections that could play a role in their
illness. IF you would like more information, go to our website,
www.immed.org under Autoimmune Diseases. We are working on new therapies
for ALS infections as well as infections found in other autoimmune patient
groups.
In an IRB-approved study between the Institute for Molecular Medicine and
Dr. Darryl See of the Immune Institute here in Southern California we have
found that 8 weeks of combination therapy for ALS patients directed at
their chronic infections (mainly mycoplasma AND echo-7 enterovirus)
increased muscle strength 20-40% in most patients. Neither treatment
alone had much effect, so we feel that both infections are important in
causing patient morbidity. This is only a preliminary treatment program,
but the results were very impressive. We have found that >85% of ALS
patients have these two infections. Unfortunately, most neurologists do
not accept at all that complex autoimmune neurological disorders could
involve chronic infections. However, when such infections are found, it
is our opinion that they should be treated. Other autoimmune disease
patients with similar (but not the same) infections do quite well on the
treatment program, so there is no reason why ALS patients should not be
treated for their infections. We have a long way to go to be able to
reverse possibly permanent damage to the CNS, but such treatments may be
valuable for many patients to alleviate morbidity and slow or prevent
disease progression.
For patients or family members that would like further information, they
Prof. Garth Nicolson
The Institute for Molecular Medicine
Huntington Beach, California
(16)
=====
for sale
==========
Subject: for sale
Date : Sun, 18 Mar 2001
I LOST MY WIFE PEGGY ON FEB 3 2001. I HAVE HER POWER WHEELCHAIR THAT WE
GOT. BUT IT WAS A LITTLE TOO LATE. SHE ONLY GOT TO USE IT ONCE. WHAT I
HAVE FOR SALE IS INVACARE RANGER II MID WHEEL DRIVE WITH TILT AND SPACE
SEATTING, ROHO LOW PROFILE PRESURE CUSHION, HEAD REST, T FOAM BACK
CUSHION, MIDLINE JOYSTICK CONTROLS WITH A U SHAPE HANDLE. NEVER HAS HAD
THE BATTERY CHARGER HOOKED UP TO IT. SHE WAS A SMALL WOMAN SO THE THE
SETUP IS FOR A SMALL PERSON. WE PAID OVER $11,000.00 FOR THE CHAIR. I AM
ASKING $7,500.00 OR BEST OFFER. THANKS, AND GOD BLESS YOU
(17)
=====
re: communication devices
==========
Subject: RE: Communication Devices
Date : Tue, 27 Feb 2001
My husband was diagnosed with ALS 11/01/00. According the specialist at
Northwestern Memorial Hospital in Chicago, Michael has Upper Motor Neuron
problems only which has affected his speech terribly. He has not had any
other problems other than speech. Well, a wonderful communication device
was recommended by a speech pathologist. It's called a Lightwriter. It
has a keyboard with a display that the pALS can see and the other person
can see. It also speaks when the space bar is pressed or when a special
key is pressed, it speaks a whole sentence.
This device is expensive, but has been a God-send for us. It is small,
about 8x11 and weighs under 2 lbs. I hope this information helps others.
Lisa Murphy
=== end of alsd 842 ===
ALS Digest #842 (24 April 2001)