===============================================================
== ==
== ----------- ALS Interest Group ----------- ==
== ALS Digest #787 (01 Janurary 2001) ==
== ==
== ------ 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 ==
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== 4500+ 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== not peer reviewed.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 ==
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===============================================================
CONTENTS OF THIS ISSUE:
1 .. A hope
2 .. Topiramate
3 .. re: Traveling with BiPAP (ALSD784)
4 .. re: Delilah Wannabe's
5 .. re: Health Insurance? (ALSD784)
6 .. re: I am wondering ...
7 .. Van for sale .. NC
8 .. brain recovery
9 .. Jaime R.P.P.'s Diet
10 . re: Computer for ALS patient
(1)
=====
A hope
==========
Subject: A hope
Date : Sat, 30 Dec 2000 02:35:39 +0900
In today's newspaper (Asahi and Yomiuri newspaper), there is a report
from Osaka University Medical School, Professor Hideyuki Okano
create Motor Neuron tissue from ES tissue.
Experiment is done with mouse. If created Motor Neuron tissue is planted
in ALS patient and it works as part of total neuron system, there might
be a possibility to help ALS patient.
http://www.***.com/
(2)
=====
Topiramate
==========
Subject: Re:
Date : Sun, 31 Dec 2000 11:11:02 +1100
Hi from Australia!
Just wondering if anyone has heard of the drug: Topiramate
Any information about this from anyone would be most appreciated.
Thanks Donna Watterston
(3)
=====
re: Traveling with BiPAP (ALSD784)
==========
Date : Mon, 25 Dec 2000 12:12:22 -0800
Subject: Re: Traveling with BiPAP - ALSD784 (15)
Dear Donna,
You should be able to safely take your portable BiPAP ventilator with
you. Many people who are ventilator users travel and take their
equipment with them.
If your medical equipment company and respiratory therapist cannot assist
you with this, contact the manufacturer, Respironics - customer service,
for their advice: (800) 421-8754
http://www.***.com/
Another resource is the International Ventilator Users Network (IVUN)
4207 Lindell Blvd., #110; Saint Louis, Missouri 63108-2915
TEL: (314) 534-0475
FAX: (314) 534-5070
http://www.***.com/
Also, Lori Hinderer has an article in the IVUN News "Airline Travel with
Ventilators" - which particularly reviews how to make arrangements if you
need to use your ventilator most of the time (including while in flight).
It is much easier if you only need to use the BiPAP at night, and not
during air travel. This article is online at:
http://www.***.com/
Also, remember that the ALS Association's Patient Services can also
assist you: Patient Hot Line - TEL # 800-782-4747
All best wishes for the holiday season and the New Year !
Edward A. Oppenheimer, M.D.
Pulmonary Medicine - Los Angeles
(4)
=====
re: Delilah Wannabe's (ALSD782)
==========
Date : Mon, 25 Dec 2000 13:05:53 -0600
Subject: Re: Delilah Wannabe's
I don't understand what was meant by a recent post in ALSD 782. The
disparagement of Dr. Sampson seems to be a personal attack on him, instead
of a discussion of the facts of the issue.
There are many "researchers" who say they conduct "scientific research"
when in actuality they do nothing of the kind. Quality scientific research
requires a very rigorous methodology, requiring critical consideration of
elements such as population description, sample selection, variable
isolation and weighting, mathematical treatment such as linear regression,
appropriate statistical analysis, and the publication of the results in an
academically recognized peer-reviewed journal. The most valid research
involves controlled studies to identify, test, retest, and validate
hypotheses.
While correlation analysis can provide a tantalizing clue to a problem, it
cannot establish causality. In other words, if A happens when condition B
is present, there is no proof that B causes A. This applies to the amalgam
debate, the Gulf War Syndrome issues, and ALS clustering, among others.
While these are very valid areas of study, it is currently not possible
to make a scientific statement of causality in these instances. They must
be followed up with studies which test a theory of causality by use of
laboratory animals, such as worms or mice.
For example, are there any studies in which some mice were given amalgam
fillings? Such a study should have genetically identical mice given
amalgam fillings, some given ceramic fillings (to duplicate the trauma
on the mice, but without amalgam), and some held as a control group (with
no fillings). These mice would then have to be maintained in identical
settings, until they died, and examined regularly for neurological
deficits. Has a study like this been performed and publicized? I'd like
to know.
Good scientists are never sure; they are continually puzzled. They are
also detached at a certain level from their work. They do not let their
emotions drive their conclusions. They spend their professional lives
trying to identify and isolate all the variables which could affect the
process that they are studying. Even when all apparent variables are
identified, and their interaction is seemingly completely understood,
good scientists will never say "B causes A". Instead, they will give a
probability statement, something like "Given X, Y and Z, there is a P
probability that A will occur if B is present."
Poor scientists trumpet that they have found THE CAUSE. They are the ones
who will state unequivocally that B causes A. They are often emotionally
bound to their ideas. Many times when they begin a "study", they simply
seek data which supports a predetermined conclusion. They cite references
that only bolster that conclusion, and often these references are of
dubious quality. They seldom give credence to other possibilities. They do
not use scientific and controlled studies to test their ideas.
Are poor scientists well meaning, self-educated, but amateur researchers?
Are they pseudoscientists, trying to assemble disjointed facts into a
system with but surface plausibility? Or are they charlatans trying to
turn lead into gold? I don't know. That is for you, the critical reader,
to judge.
Patrick Griffin Your attitude determines your altitude.
(5)
=====
re: Health Insurance? (ALSD784)
==========
Date : Fri, 29 Dec 2000 00:51:51 EST
Subject: Health Insurance
Debbie, Re your friend without health insurance
There may be some hope depending on what state your friend lives in. Some
states, like New York, where we live have a no pre existing illness clause.
Which means that if you apply for insurance now, the insurance company will
not be allowed to ask you about any illness you may already have. The only
caveat, is that if you have not had insurance for the last 6 months, you
have to wait a period of time, I think it is another six months before your
benefits kick in, for preexisting conditions. That means that if your
friend lives in a state that has a similar law, he better get a policy now,
so that when he does need medical care, the waiting period is up. Otherwise
he has to pay out of pocket, till most of his funds are used up.
He may be able to apply for Medicare, if he is no longer working. I am not
too informed about that. Or Medicaid. TELL HIM TO GET PREPARED NOW.
Hope this helps. God Bless Susan
(6)
=====
re: I am wondering ...
==========
Subject:
Date : Sun, 31 Dec 2000 08:34:01 -0500
Hi Barbara,
My husband experienced similar over Summer 99, then he had a Pulmonary
Embolus. Because of his inactivity he was developing small {*filter*} clots in
his leg; then they travelled to his lung.
There are other causes of course but please rule out this serious
complication. I'm a nurse and SHOULD have realized what was happening,
but didn't. This disorder has a way of consuming all of our thoughts and
energies to the point we don't think as clearly.
He recovered completely and now takes {*filter*} thinners daily to prevent a
recurrence. Love and best wishes Brenda
(7)
=====
Van for sale .. NC
==========
Date : Mon, 25 Dec 2000 12:45:30 -0500
Subject: Van for sale...NC
On October 19, 2000, We purchased a dealer demo Dodge Caravan that kneels
and a power ramp folds out. At the time it had 6800 miles on it and it is
approaching 9,000 now. My husband died on 12 December, 2000. I would like
to sell the minivan and buy a new Toyota Camry. It is in excellent
condition. I never even took the plastic covers off the floor so the carpet
is like new. It is a Sport Caravan, fully loaded, cd, cassette, amfm
radio, automatic transmission, etc. It is Dark aquamarine. If you are
interested, please call 252-752-2609. We live in Greenville, NC. I have
full specs and the warranties are transferrable. $37,995. Call 252-752-2609
We plan to donate the rest of the medical equipment to the ALS Support
Group closet here in our town. If you know of some other place where I
might reach the right audience to advertise this van, please let me know.
Carol Pridgen Martoccia
(8)
=====
brain recovery
==========
Subject: brain recovery
Date : Sat, 30 Dec 2000 19:17:41 -0500
I was wondering if anyone has any experience or results from the advice
given for ALS in the brain Recovery program now out. Most of the regiment
uses supplements most of us are taking, but the difference seems to be
in the IV solution recommended. My husband [PALS] is anxious to try it,
but we have had so many false hopes, we want to find out more first.
I have emailed to this author, but have had no response yet.
[David Perlmutter, MD]. The email is www.BrainRecovery.com
Is anyone out there familiar with this? Thank you, Bonnie Shall
(9)
=====
Jaime R.P.P.'s Diet
==========
Subject: RE:
Date : Fri, 1 Dec 2000 09:12:30 -0500
JAIME R.P.P. ' S DIET
Abbreviations: tblsp = tablespoon tsp = teaspoon
Daily supplements: 1 gm vitamin C, 5000 i.u. vitamin E, 1 tablet of
andean Maca, 1 tablet of Una de Gato (from the jungle), 1 tblsp Metamucil.
BREAKFAST:
2 tblsp oats
2 tblsp whole grain rice
2 tblsp muesli
2 tblsp quinua (andean cereal)
2 tblsp kiwicha (andean cereal used by NASA)
2 tblsp maca flour (andean root, great energizer)
2 tblsp bran
1 tblsp wheat germ
2 tblsp real bee's honey
2 tblsp Ensure powder
The night before, all the above, (except for the Ensure and the honey),
is placed in a Thermos flask, and 500 cc (1/2 litre) of boiling water is
added. It is left to rest till the next morning, when it is placed in a
blender or cooking.net">food procesor, to blend it all. The Ensure and honey are added,
as well as a little water as needed. We place it all in a plastic bottle,
similar to those used in hospitals for dextrose, and we hang it upsidedown
from a tube support, and connect it directly to his gastrostomy tube by
means of thin, clear, plastic hose or tube, that is securely fastened with
tape. The speed at which he is fed, is graduated by elevating or lowering
the support tube. Once he has finished, we clamp the hose, untape it and,
through a syringe, give him 1 cup of warm camomile tea, to clear his
gastrostomy tube of any food.
LUNCH AND DINNER
There are 3 diferent recipes, which we rotate every day. We prepare one
of these recipes per day, and give him half of it for lunch, and the other
half for dinner. The vegetables must be thorougly cleaned.
RECIPE # 1 RECIPE # 2
200 g pumpkin or squash 150 g peas
2 carrots 1 aubergine
= turnip 1 zucchinni
4 celery stems = leek
5 leafs chard or silver-beets 250 g spinach
1 onion 4 celery stems
1 white potato 1 yellow potato
6 asparragus 100 g broccoli
100 g oyuco (andean root) 50 g oca (andean root)
1 clove of garlic 1 clove of garlic
3 tblsp raw whole grain wheat or oats 3 tblsp raw whole grain rice or
whole grain pasta
250 g lean beef 250 g fish (any type)
RECIPE # 3
250 g green beans
2 caiguas (peruvian vegetable!)
1 beetroot
1 white corncob (remove the center stem)
2 artichokes (only their center, not the leaves)
3 tomatoes
50 alfalfa sprouts
4 celery stems
2 spring onions
1 sweet potatoe
1 clove of garlic
3 tblsp raw lentils or kidney beans or soya beans
250 g chicken {*filter*}
Place all ingredients together and either steam or simmer with some water
till all the vegetables are cooked.
Place everything in a blender or cooking.net">food procesor, add enough broth to make
2 litres of "soup" and blend together to a smooth texture. Divide the
"soup" into 2 portions, one for lunch and one for dinner. Before giving
him the "soup", add to it 1 tblsp of olive oil, 2 tblsp bran and 1 tblsp
Ensure. Warm it up and blend for a few minutes more. Do the same for the
evening "soup".
These soups are given to him the same way as the breakfast mixture.
SNACKS
Around mid-morning, we give him 400 cc (1/2 litre) of fresh fruit juice,
either just squeezed or the fresh fruit blended (e.g. pineapple and
papaya, or strawberries and banana, or orange and pears, etc. use the
fruit available) with 1 tblsp of honey
In mid afternoon, he takes 300 cc of natural yogurt, and sometimes he
asks for a little coffee.
Both snacks are given to him directly through a syringe, and a little
water afterwards, to clear the tube.
(10)
=====
re: Computer for ALS patient
==========
Subject:
Date : Tue, 26 Dec 2000 09:55:23 +0100
I read your question on ALS digest. I developed commercial software for
ALS patients, and also work on a project for the IT University of
Copenhagen developing low-cost Eye Tracking equipment. A few bits and
pieces of information:
Based on your description there are several software/hardware solutions
that may be applicable. Eye-tracking (ET) is certaintly one, but there
may be others.
Basically there are the following modes of input:
* Keyboard
* Mouse/joystick
* Scanning (one-switch input)
* Eye tracking
* "{*filter*}s", including speech recignition, morse etc.
You will usually need some kind of software to go with the input system,
unless you can use a keyboard.
The software falls in three groups:
* Remotes - programs that let you use ordinary programs like Word and
Excel. This has both advantages and disadvantages. On the pro side is the
ability to use the same software as everyone else. On the con side is the
fact that normal programs were not designed with fast operation for
disabled persons in mind. If your basic need is communication with helpers
and family, you ought to use a specialized communication program. There is
a simple remote program (screen keyboard) included in Windows ME and
Windows 2000, but you certaintly want to check out Wivik and Iris.
* Dedicated communication programs. These programs are designed with fast
communication in mind, in order to replace the lost speech function. They
usually include some sort of synthetic speech solution, or can be
interfaced with one. These programs are NOT word processors, and you
should not expect to find advanced formatting functions in them. This is
the kind of software professor Stephen Hawking uses. I do not know any
english-language based programs in this category, as I work in Denmark,
but you can use Wivik or Iris in a pinch. In a few months I expect to
release my own program in this category (Communicator) in an english-
language version,
* Office applications designed for disabled users. There are currently
none that I know off, but this may change in 2001 - stay tuned.
Quote:
>From the information in your posting, I gather keyboard and mouse/
joystick is out. The "{*filter*}" solutions generally are quite expensive,
and usually take a lot of tweaking to make them work, if at all...
Both ET and scanning is based on using a screen keyboard. This screen
keyboard contains the letters, numbers and function keys, and these can
then be selected in some manner. When using ET you usually select by
dwell time activation or blink detection. When using scanning a cursor
moves down the lines of letters, and you can then select first a line,
then a letter by clicking some form of switch. These switches exist in
a very wide varaity, and can be wired to almost any bodily function that
is conciously controlled.
Pros for ET:
* Eye movement is usually the last motor function under concious controll
for ALS and MND patients
* ET can be faster than scanning
Cons for ET:
* ET equipment is EXPENSIVE. A good eye tracker (say Quick Glance) costs
approx. USD 3.000,-, and that is only the hardware - you still need a
screen keyboard.
* ET equipment is somewhat unprecise, and takes a lot of tweaking to make
it work right. Light and movement may throw off the calibration.
No mobile solutions possible.
* Not all eye movement is under concious control. Imagine a bird flies
past the window. You eye tracks the movement, and suddenly you have
deleted the last sentence you wrote....
Pros for scanning:
* With the right switch, almost any ALS/MND patient can use scanning
* Several specialized communication programs with a scanning user
interface exist
* Cheaper than ET equipment
* Mobile solutions (eg. attaching a laptop to a electric wheelchair) are
quite possible
Cons for scanning:
* May be slower than ET
Based on this I propose that you first try to check if the patient can
use scanning. You also may want to gather information on dedicated
communication programs in English.
As I mentioned, I expect to release my communication program 2Q or 3Q in
an English version. If you want to betatest free of charge, drop me a
line. I can't help you with finding switches for scanning, but may be
able to assist in finding vendors in your country.
You should check out http://www.***.com/
in-depth information on hardware and software solutions.
Regards Anders S. Johansen SecondGuess Software (www.secondguess.dk).
=== end of alsd 787 ===
ALS Digest #787 (01 Janurary 2001)