===============================================================
==                                                           ==
==        ----------- ALS Interest Group -----------         ==
==            ALS Digest #807  (15 February 2001)            ==
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===============================================================
CONTENTS OF THIS ISSUE:
1 .. Prostate cancer and ALS
2 .. re: heavy metals and ALS
3 .. Support group in Miami
4 .. Van needed
5 .. Anyone else in the same situation?
6 .. re: HMO quality of care
7 .. re: metals and ALS
8 .. re: Testimony About ALS (ALSD802)
9 .. re: ALS - Speech Problem
10 . HeadMouse
11 . {*filter*} electronic chair for sale
12 . wet cell battery
13 . re: Robitussin
14 . Bi PAP
15 . hospital bed and mattress

(1)
=====
Prostate cancer and ALS
==========
Subject: Prostate cancer and ALS
Date   : Tue, 13 Feb 2001 18:19:22 +0100

I am a Spanish 63 years man, with ALS disease since two years ago.
On December 97, I was diagnosised with a carcinoma in the prostate. The
Dr. recomended hormonal terapy for decrease the level of testosterona
for stop the growing up of the tumor.  In Setember 98, I observed loss
of power in my hands, and generally tired.  I went to the Dr. and after
several medical tests, the diagnosis was ALS, confirmed by a second
neurologist.

I decided in June 2.000, a radioterapy for my prostate, and prescind
the hormonal terapy, convinced that the ALS was a consecuence of the
loss of the testosterona.

I would like know, if somebody has obseved something like that, or a
scientific opinion about.  Thanks and sorry by my poor English

(2)
=====
re: heavy metals and ALS
==========
Date   : Mon, 12 Feb 2001 04:07:01 EST
Subject: Re:

The physicians referred to do not prowl here.  They are welcomed by the
host and by hundreds of PALS who appreciate information on avoiding
worthless treatments and intentional scams.  Physicians' agenda is to
cure when possible, prolong life if possible, and relieve discomfort
always.  They take an oath not to use ineffective treatments, and not
to deceive. People who promote unsound ideas about illness have taken
no such oath.

Since there is little to no evidence of heavy metal toxicity in ALS,
physicians do not tell people that there is such toxicity. How were the
levels detected?  At which lab? If one does have high copper levels,
does that produce ALS syndrome?  Unless performed in reputable
laboratories, metal levels can be inaccurate and misleading.  One can
look it up in journals and texts.

WSampson MD

(3)
=====
Support group in Miami
==========
Subject: Support group in Miami
Date   : Thu, 15 Feb 2001 09:44:19 -0500

University of Miami Kessenich Family MDA ALS Center ALS Support Group
dates for the year 2001

*       Saturday, March 10
*       Saturday, April 14
*       Saturday, May 12
*       Saturday, June 09
*       Saturday, July 14
*       Saturday, August 11
*       Saturday, September 08
*       Saturday, October 13
*       Saturday, November 10
*       Saturday, December 08

The ALS support groups will be held from 12:00 p.m. to 1:30 p.m. at the
University of Miami Hospital and Clinics, 1475 NW 12th Avenue, Room
#1301.

Ginna P. Gonzalez, RN, BSN, CGRN
Nurse Director
Kessenich Family MDA ALS Center
305 243 7400
1800 690 ALS1
Fax 305 243 1249
www.miami-als.org

(4)
=====
Van needed
==========
Date   : Thu, 08 Feb 2001 21:01:15 -0400
Subject: Van

We are looking for a used mini van that has been converted for wheelchair
transport. We live in MA, and would need to have the seller live within
a reasonable distance. Something under 20K with low miles, and that would
allow the wheelchair to sit next to the driver.

(5)
=====
Anyone else in the same situation?
==========
Date   : Mon, 12 Feb 2001 10:57:52 +0000
Subject: ALS Digest

My father is an Motor Neurone sufferer. He was diagnosed over 11 years
ago. The only medication he is on are eyedrops for glaucoma and
occasional Ibuprofen (Brufen) pain killers as required. I am suprised at
the rapid speed of disease progression of many of the PALS. My father
has a long history of chronic sciatica, slipped disks etc - it is an
occupational hazard because he is a mechanic. 12 yrs ago he slippad a
disk and developed bad sciatica in both legs. Docs tried traction,
cortizone etc. no effect - in hospital for 4 months and he was worse
when he came out. I learned at the time that he has noticed a
degredation in his speech at the same time. After MS screening, lumbar
puncture, myelogram, MRI, and CAT scanning he was finally diagnosed the
following July (1990).  At that time he was able to get around using 2
walking sticks (barely) or more normally a walking frame, hand co-
ordination perfect, slurred speech, some muscle spasms - but not too bad.
However, since then, his condition has not worsened much. His speech is
about the same, he can still use the frame, but more usually a standard
wheelchair. He is still able to drive (scares the hell out of me though).
I have often wondered if his initial diagnosis was not correct, even
though his symptoms closely match early-stage ALS. Has anyone know
anyone else in a similar condition?

There are also 2 entries in the last copy of the digest that I'd like
to respond to.

Sylvia wrote about getting on a plane with a motorised chair. I am
unbeleivably impressed by this. My father is in much better shape and is
able to use a normal wheelchair but refuses to travel to the Pub using
it out of misplaced embarrasment. I have tried to change his mind but
to know avail. I'm now realising how lucky he is to be as well as he is
after suffering from ALS for 11 years. I'd love to be able to convince
him of this also - I guess it's easy for me to say that because I'm not
the one in continuous pain.

Urban Hannan was speaking about uncontrollable laughter/crying. My dad
has this problem also. As a family we can help with this. On the
laughter side, this normally happens when my dad is telling a joke etc,
the laughter (almost like whooping cough) can go on for about 5 mins.
I always try to let my father finish what he is saying in his own time
without putting words into his mouth. That is the most infuriating
thing of all for him. He is quite eloquent and articulate and needs to
be given the time to say what he wants to say in the way that he wants
to say it. He appreciates it because it shows that we still respect his
opinion (and like his jokes - which are usually pretty good although
quite protracted in the telling). The crying is more difficult. It's
tough. Those of us who are not PALS are able to try and keep the
visible manifestations of our emotions in check when we need to. It is
harder for my Dad, and makes him feel embarrased also. I think it shows
compassion to weep - even if it's just because of a sad incident on TV
or a depressing news item. It means we are human, and PALS all the more
so.

I know I've been a bit long-winded.  I admire your strength.
Rock ON  Nick.

(6)
=====
re: HMO quality of care
==========
Date   : Fri, 9 Feb 2001 08:21:25 EST
Subject: HMO quality of care

Dr. Oppenheimer claims to take issue with an article I wrote for the
American Journal of Public Health in which I reviewed research comparing
the quality of care offered by HMOs with traditional fee-for-service
health insurers (ALSD803). In that article, I reported finding that HMO
care was inferior to the care offered by doctors working for traditional
insurance companies.

But Dr. Oppenheimer does not attempt to evaluate my article (it appears
he hasn't read it). Instead he argues that it is "less than useful" to
compare the quality of HMOs as a class with the quality of traditional
health insurers as a class. He doesn't explain why this comparison is
"less than useful."

Such a comparison is in fact absolutely essential. HMOs are a very
different form of insurance. They have risen rapidly to a position of
{*filter*} in the US health care system, and have influenced more
traditional insurers to adopt HMO cost-control tactics. Comparing HMOs
as a class to traditional insurers as a class is just as necessary and
useful as, for example, comparing the fuel efficiency of SUV's as a
class to the fuel efficiency of cars as a class. Yes, I know, some SUVs
get better mileage than other SUVs, but it is useful to know that SUVs
as a class get worse mileage than cars.

US citizens and lawmakers need to know, Has the takeover of the US system
by HMOs damaged quality of care? The answer, according to my study, is
yes.  My study does not take a position on whether some HMOs are better
than others.

Dr. Oppenheimer's suggestion that consumers do research to find out which
HMOs are better than others is not only irrelevant to my study, but it
is bad advice. There are no useful "report cards" on HMOs. The "published
ratings" that Dr. Oppenheimer refers to are not just worthless, but
possibly misleading because they survey all HMO enrollees, the healthy
and the sick. Because the healthy always greatly outnumber the sick,
these "consumer satisfaction" polls give great weight to people who make
little use of their HMO doctors and therefore know very little about how
their HMO responds when it is really tested by a sick person.

Since Dr. Oppenheimer thinks highly of Kaiser Permanente's HMO, let me
quote  David Lawrence, Kaiser's CEO: "People have almost no ability to
compare health plans" ("Does your HMO stack up?" Newsweek, June 24, 1996),
p. 56).

Kip Sullivan

(7)
=====
re: metals and ALS
==========
Subject: re: metals and ALS
Date   : Sat, 10 Feb 2001 21:49:50 -0500

Mercury is well documented in the medical literature to cause most of
the problems related to ALS.  As documented with credible medical study
references that I've posted before, mercury accumulates in the CNS/motor
neurons and causes damage through toxicity and free radical formation.
Mercury is also documented to cause cellular level blockages of the basic
metabollic enzymatic processes that convert proteins and amino acids like
cysteine to the basic building blocks and energy fuel that the body needs
for energy, structure, and detoxification, such as cysteine dioxygenase
(CDO) and GGCS which convert cysteine to sulfates, glutathione, and
taurine.  These are needed for basic building blocks, to fuel the ATPase
cellular energy system, and for detoxification.  Mercury also is
documented to block other cellular enzymatic processes such as the ones
that are needed to properly digest milk casein and wheat gluten, and
sulfur.  Mercury has been found to strongly inhibit the activity of
xanthine oxidase and dipeptyl peptidase (DPP IV) which are required in
the digestion of the milk protein casein, and the same protein that is
cluster differentiation antigen 26 (CD26) which helps T lymphocyte
activation. CD26 or DPPIV is a cell surface glycoprotein that is very
susceptible to inactivation by mercury binding to its cysteinyl domain.
Mercury also damages the metallothionein detox system and is especially
harmful to those with a weak detox system and those genetically
susceptible to mercury due to being genetically poor metals excreters.
Large numbers with ALS and similar conditions like Parkinson's have been
tested and found to have virtually all of these conditions that mercury
is documented to cause, and that are related to the main problems in ALS.
Its easy to get tested and confirm that most with ALS have these problems.
For example IMO all should get a Comprehensive Liver Detox Test from
Great Smokies Diagnostic Lab (www.gsdl.com)  You will almost surely find
that you have high free cysteine levels, low sulfate levels, blocked
metabolic pathways for converting cystine and other amino acids to the
things the body needs; also high free radical activity and lipid
peroxidation.  You would also likely have metallothionein disfunction if
tested and another metabolic blockages and damage that can be tested by
a urine fractionated porphyrin test, done by most labs. Most will likely
find high coproporphyrin levels, indicating toxic metabolic damage to
the liver/kidneys/etc.(by something like mercury).  This is an FDA
approved test for toxic metal metabolic damage.  Another medical lab
www.altcorp.com also has tests for ALS conditions.

Once the process is started, its very difficult to reverse, but if caught
early and able to get rid of the toxics,etc. that cause the enzymatic
blockages and free radical damage, and accumulation in the CNS,  several
that I know of know of have been able to have significant improvement in
their condition and some mostly recover.  I think some on this list are
among those with improvement according to messages I've gotten.

But mercury isn't the only thing that causes such enzymatic blockages
and free radical damage, but its one of the most significant and common
due to its extreme toxicity and the widespread high exposure.  Some I
know with ALS also had significant improvement after dental treatment
for root canals or cavitations (improperly healed tooth extraction sites
that accumulate toxics and highly toxic anerobic bacteria toxins).

B. Windham,  Chemical Engineer

(8)
=====
re: Testimony About ALS (ALSD802)
==========
Subject: Re:Testimony About ALS (ALSD 802)
Date   : Sun, 11 Feb 2001 23:59:26 +0100

Sorry for the mistake: I was kindfully made aware of a mistake in the
URL of the Danish author Birger Jeppesen that I mentione in ALS Digest
#802: it should read http://www.***.com/

Jan van Atten (Rotterdam)

(9)
=====
re: ALS - Speech Problem
==========
Date   : Mon, 12 Feb 2001 15:00:50 -0800 (PST)
Subject: ALS - Speech Problem

URL: http://www.***.com/  is a good resource for information about
speech devices with lots of links.

Software called  E-ZKeys from Words +
http://www.***.com/

and Gus from Gus Communications   http://www.***.com/
the bells and whistles you are looking for.  There may be others.
Words+ also makes a software program called "abbreviate" that  expands
abbreviated phrases and works like auto correct does in Word.

(10)
=====
HeadMouse
==========
Date   : Fri, 9 Feb 2001 17:35:16 EST
Subject: HeadMouse

I am considering buying HeadMouse for a portable computer. Has anyone
used this system? Does anyone have any comments about HeadMouse, either
for or against it?

Thank you,   Jon Phillips (PALS)

(11)
=====
{*filter*} electrinic chair for sale
==========
Date   : Mon, 12 Feb 2001 15:45:43 EST
Subject: (no subject)

Hi my friends. I am interested in selling a {*filter*} electronic chair.
If you are interested please write me and I will give you more details.
The chair was never used.

(12)
=====
wet cell battery
==========
Date   : Tue, 13 Feb 2001 13:54:59 EST
Subject: Re:

Can anyone tell me if the have heard of the wet cell battery to help
reverse ALS symptoms and what they have heard good or bad?  Also has
anyone ever heard of a med (maybe herbal) called Amrit Kalash what it
is used for, how much, where available, good or bad side affects,etc.?

Thank You & Have a Great Day, Kim

(13)
=====
re: Robitussin
==========
Date   : Sun, 11 Feb 2001 19:53:46 -0800
Subject: Re: Robitussin

There was a question in a previous ALS Digest about the effectiveness of
Robitussin cough syrup in reducing the thickness of phlegm. The "active"
ingredient in Robitussin and other expectorant cough syrups that reduce
the thickness of phlegm is guaifenesin, 100 mg/teaspoon.

Guaifenesin is also available in tablet form as Humibid, sold over the
counter (200 mg/tablet) or by prescription (600 mg/tablet).  According
to the Physicians Desk Reference, the usual dose for prescription
Humibid is 1-2 tablets twice per day (maximum of 2400 mg/day), and there
are no significant side effects.  My wife, an ALS patient with a
tracheostomy, has been taking prescription Humibid daily for 6 years (2
tablets/day for the first two years, then reduced to 1 tablet/day), with
no apparent side effects.  It seems to help thin out the mucous in her
lungs and make it easier to cough up.

---Alan Dubin---

(14)
=====
Bi-PAP
==========
Date   : Mon, 12 Feb 2001 11:18:35 +1100
Subject: Bi-PAP

Hi, I am PALS with PBP, will soon need a PEG and BI PAP, if not Vent
I know how BI PAP functions - but can anybody tell me what acronym
BI PAP stands for?

Logic says:- bi-directional pulmonary auxiliary pump?

Vincent Celestina.

(15)
=====
hospital bed and mattress
==========
Date   : Sat, 10 Feb 2001 18:42:45 -0500
Subject: hospital bed and mattress

My husband is going to need a new bed for comfort and we don't know which
type of mattress would be best. Any suggestions?  He can no longer turn
and position himself so he is waking up often in the night.

=== end of alsd 807 ===