===============================================================
== ==
== ----------- ALS Interest Group ----------- ==
== ALS Digest #805 (11 February 2001) ==
== ==
== ------ Amyotrophic Lateral Sclerosis (ALS) ==
== ------ Motor Neurone Disease (MND) ==
== ------ Lou Gehrig's disease ==
== ------ maladie de Charcot ==
== ==
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== the editor is not a medical doctor and the Digest is ==
== not peer reviewed. This newsletter is not intended to ==
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== ==
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CONTENTS OF THIS ISSUE:
1 .. Travel help
2 .. Stem Cell Research
3 .. VICTIMS - The Ten Point Lesson That Can Help
4 .. re: Testimony About ALS from France
5 .. New ALS Information re SSDI Recipients with ALS
6 .. Fetal Cell Transplants Help Huntington's Disease Patients
(1)
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Travel help
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Date : Sat, 10 Feb 2001 00:30:58 EST
Subject: Travel help
Hello,
I am planning a trip from Minnesota to Florida for my family, including
my husband that has had ALS for the past 7 years. I am trying to avoid
taking his wheel chair on the plane, as I am concerned that it may get
damaged. He is able to walk on and off the plane, so we can use a manual
chair in the airports.
What I am looking for help with, is finding a source to rent a power chair
with a shelf for the bipap machine. He is not on it full time, but I want
it in case he needs it. I am hoping that we will be able to spend a couple
of days at Disney, or other spots with our two kids, ages 7 & 9. This will
probably be the last year we are all together.
Part of the puzzle is that we are flying in to Orlando, but out of Tampa.
In addition, a suction machine that we could use for the trip would mean
one less piece of equipment that I had to transport through the air.
I have made arrangements with the airline, NWA to take the bipap on board.
I have a collapsible cart on wheels to take it on and off. It will all
fit in the overhead for take off and landing. The aircraft for our flight
requires us to sit in row 26 to be able to access an electrical outlet,
but it can be done. I found that NWA was helpful, and accommodating
regarding our special needs.
Just the same, I am reluctant to intrust them with my husbands RangerX
Storm Series! I forgot to mention that he uses a joy stick to drive.
Any suggestions would be greatly appreciated.
To be safe, we are bringing along a highly qualified RN.
Thank You, and God Bless Patti Walker
(2)
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Stem Cell Research
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Date : Sat, 10 Feb 2001 01:01:03 -0500
Subject: Please take the time to read and sign
Dear Friends,
I have just read and signed the online petition:
"Petition By Members of the Massachusetts General Hospital Neurological
Web Forum and Other Concerned Citizens In Support of Broad Public Funding
for Fetal and Embryonic Stem Cell Research "
It is hosted on the web by PetitionOnline.com, the free online petition
service, at: http://www.***.com/
I personally agree with what this petition says, and I think you might
agree, too. If you can spare a moment, please take a look, and consider
signing yourself. Please consider signing this. This is honestly the
only hope my mother and millions of other people have at having a long
life. Please sign it, and pass it on to who ever you feel may sign it
also. ALS is a devastating disease and I am unlucky in that I get to
watch it destroy someone I love on a daily basis. I, again, beg you to
sign this petition. Thank you and GOD BLESS! Best wishes, Susan Staton
(3)
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VICTIMS - The Ten Point Lesson That Can Help
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Date : Wed, 7 Feb 2001 20:55:13 EST
Subject: "VICTIMS"-- The Ten Point Lesson That Can Help.
Due to the fact that the readers of the ALS Digest are from all walks of
life... and that no two of us seem to be in the same stages of ALS.. and
that many of those who write in do not have our disease..and write of
Research, and Statistical studies..one finds that some areas appear to
be left out.
As I'm heading into my third year of hearing,knowing, feeling, and learning
what ALS is all about.. can still see that the World of Medicine still
falls short of many of our needs. We already know that far to many of our
family doctor's were on vacation during the time that ALS was brought up
at Medical School. We also know that if many more of us were afflicted
with cancer, or if tens of thousands of us had come out of closets with
social diseases ..that the world of medicine would be getting close to
giving us help.. as the financial gains would make it worth their while.
I've tried to volunteer my body to help others down the line.. but, have
been turned down as the FDA is still gathering facts on the "CURED.. RATS
and MONKEYS" they are watching. Also I'm not allowed to request pills,
outside the USA, where it appears they are ON TO SOMETHING..that could
aliviate the pain that I feel 24-hours a day. Sure seems to us that the
Pharmaciutical organizations are getting the right amounts of payolla to
the right officers in FDA.
So we are left to simply figure out how to get through TODAY as best we can.
SIMPLE THINGS LIKE:
1.) Moving our bodies 6" to a foot: I now use plastic garbage sacks a
lot. (White 13-gal ) Those $50.00 sliding boards have a few areas where
they help..but, a white garbage sack..under my rear-end moves me better.
2.) Toilet stools...the sacks will help you get there..but, smear on a
little Vaseline on that lid..and your rear end does not stick to it.
3.) Did ANYONE think to tell folks on MEDICARE that Uncle Sam will buy
you an Electric Power Chair?? Just ask your Doctor to request it.
(Without mine would have layed far too many hours in bed. ) I work
outside on mine.. visit with neighbors, ride buses that are wheelchair
accessable..and in general forget (at times ) that the legs don't work.
NOTE: when you get your power chair slip one of those plastic garbage
sacks over that seat..in case you are prone to accidents.
4.) Overhead fans, closing doors behind you etc.etc. Get yourself a
ball of twine and watch how quickly you leap those hurdles. Many other
uses for the twine.
5.) Ramps: Let the folks at your church know of your need and watch
how fast you are moving down YOUR RAMP.
6.) Your rear end: Baby wipes are fantastic in helping you clean
yourself. You can also take a mini bath with the wipes..crotch, rearend,
armpits, etc.
7.) MEN..save those empty milk, orange, bottles. Stash them where
needed..as getting to the bathroom is not always easy. ALSO MEN..the stuff
you were born with and ladies do not have..may have made you very proud
to have..years ago..but, they become excess baggage in making a transfer.
Wrap some toilet paper or a small rag around them..for safety sake.
8.) REMEMBER PALS...YOU ARE ONLY "VICTIMS" WHEN WE ALLOW OURSELVES TO BE
TREATED THAT WAY!!
(EXAMPLE----) My Doctor wanted me to have a Hospital bed with a trapese
attached. They were rented from one of the largest hospital organizations
here in Houston. Sounds great RIGHT?? Wrong!!! The trapese collapsed on
me the second night. Called them..chewed them out..they fixed it...stayed
fixed for two more weeks when it collapsed again. What about the bed??
( One thing you know is these things are not being used anymore in their
hospitals. 30 inches wide (when was the last time you saw a 30" wide bed
in a hospital..) and comfort wise..the guys downtown laying under the
bridge, on cardboard cartons, have more comfort..( and those guys don't
have to worry about falling off the edge when their mattress breaks down
on the edges where they sit.) HOPE YOU GET MY POINT..the Bean Counters
in these hospitals have figured out they can re-cycle junked items in
their warehouse.. and Medicare will pay them to do it. Have sent back one
bed to Memorial/Herman Hospital..and another is going back. I sleep in a
very expensive recliner that has heat and a {*filter*} as well.
Just about forgot!! Want confort?? Have them rent you an air-mattress.
They charge an arm and a leg for a plastic mattress approx. 1/2" thick.
Turn on a mini compressor and it widens to approx. 1" Not bad at all if
you want to sleep on inflated linoleum all night as it pops and cracks as
air fills the various chambers. (Back to the recliner.)
9.) Just so you will know.. I'm not all negative.. the best thing for my
rear-end is a cushion called a "Ro-Ho." An air filled seat insert that
feels great. The only negative thing is the price..( $300.oo) so you can
sit in comfort.
10.) Hospitals love to bill both you and your insurance company. In
December of 1999 I spent three out patient days at Methodist Hospital
( in Houston ) to hear.."It looks like a 95% chance that you might have
ALS." ( 95% chance and the word MIGHT still ring in my thoughts.)
Now over the months following I received and ignored bills from Methodist
Hospital, Baylor University, and The Mayo Clinic. As yet have not
received an answer on how Baylor got involved.. (It's a teaching
institution so some of those folks had to be students.. my life is on the
line.. and they send me kids younger than my grandkids.) Have no idea
how Mayo got involved but their bills went to a bill collection agency..
as has one recently from Methodist.
This bill sez I owe them $604.00 for lab work. Three times I have called
to get an itemized billing. Each time was told that they do not send
itemized bills..( Think on this..if these folks were building a house.
THEY would want to know how many nails were used.)
Had some other INDIVIDUALS bill me..and they were ignored too. The total
bill for me to find out that by 95% I MIGHT have ALS..came to approx.
$14,000.00...and up to now I'm the only one who knew that as all their
Medical contractors bill on their own.
DO NOT BE A VICTIM..MAKE THESE PEOPLE GIVE YOU TOTAL BILLINGS..IN PLAIN
ENGLISH.
I can only Pray that some of this can help each of you PALS!! God Loves
you and so do I.
(4)
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re: Testimony About ALS from France
==========
Subject: Testimony About ALS (ALSD 802)
Date : Mon, 5 Feb 2001 11:06:21 +0100
Cher Robert,
Knowledge of my French is abominable, so I will not buy your book to read
it. As far as I see it, it's a good idea to have it translated into
English. Many people in the world speak English, and for the equally
great number of PALS that can not easily read a book in English, it could
be translated easier into their own language.
I wonder if you could both issue the book and also publisize it on the
internet. I'm almost sure that this way of free publication would not only
raise the selling rates of the book, but will also enable PALS, who can't
turn the pages, to read your book.
As for me: I would be glad to assist or help to translate from English
into Dutch. By using the internet for it, we could read it much earlier.
Meanwhile, I will transfer your ALSD article and your e-mail address
further.
I should mention the book written in English by the Danish author and ALS
patient Birger Bergmann Jeppesen. Birger also wrote his book with his eyes.
The book - - "IS HEAVEN A BETTER PLACE?" - -,
his website: http://www.***.com/
"The intensity and the insisrently positive attitude of his narrative will
leave few untouched; with gentle sarcasm, seriousness and warm humou he
takes the reader along on his journey through life - that of the past and
that of the present."
I wish you luck, Jan van Atten PALS from Rotterdam
(5)
=====
New ALS Information re SSDI Recipients with ALS
==========
Subject: New ALS Information re SSDI Recipients with ALS
Date : Fri, 9 Feb 2001 12:49:42 -0700
NEWS FROM MDA!
SSDI RECIPIENTS WITH ALS NO LONGER HAVE WAIT FOR MEDICARE
A change in federal law effective this summer should provide quicker
access to essential medical equipment and services for people with ALS
who receive Social Security Disability Insurance income. Starting July 1,
people with ALS who get SSDI also will be eligible to obtain Medicare
benefits when they begin receiving SSDI checks.
Under the current law, those who qualify for SSDI must wait two years
before being enrolled in Medicare. The new law, passed by Congress in
December, exempts people with ALS because of the rapid decline in health
most experience after diagnosis. The disease's quick progression creates
a need for extensive medical care and equipment before the two-year
waiting period is up.
As of July 1, everyone with ALS who receives SSDI will be eligible for
Medicare, including those now in the two-year interim.
"Beneficiaries whose date of eligibility for Medicare is Aug. 1, 2001,
or later under the 24-month rule will automatically be eligible for
Medicare effective July 1, 2001. It should be seamless," says a
spokesperson for the Health Care Financing Administration (HCFA), which
administers Medicare. "When you are disabled with ALS, you will become
eligible for Medicare."
She adds, "The Social Security Administration will notify each beneficiary
of their date of eligibility for Medicare, and the Health Care Financing
Administration will issue a Medicare card and the handbook 'Medicare and
You 2001.'"
People who apply for SSDI still have a wait of about five or six months
for eligibility.
For further information call the Social Security Administration at
(800) 772-1213 or visit the Web site, www.medicare.gov.
Tom Bush
Director of Online Services & MDAchat Administrator
MDA National Headquarters
Fax: (520) 529-5454
Phone: (800) 572-1717
(6)
=====
Fetal Cell Transplants Help Huntington's Disease Patients
==========
Date : Wed, 31 Jan 2001 15:49:18 -0800
Subject: Fetal Cell Transplants Help Huntington's Disease Patients
Fetal Cell Transplants Help Huntington's Disease Patients
"Motor and cognitive improvements in patients with Huntington's disease
after neural transplantation" - Lancet
Transplantation of fetal brain cells has produced functional, motor and
cognitive improvements in a small number of patients with Huntington's
disease.
In a pilot study over more than five years, French clinicians grafted
human fetal nerve cells and found increased metabolic activity in various
subnuclei of the striatum in three of five patients. This contrasts with
a progressive decline in the two other patients in the series.
The team led by Dr. Marc Peschanski and colleagues with INSERM, in Paris,
point out that Huntington's disease is a neurodegenerative disease which
mainly affects the striatum and there is no treatment until now for the
severe motor and cognitive degeneration. The basis of the surgery are
animal studies which show motor and cognitive functions can be restored
by fetal brain cell transplantation.
An international committee has established the Core Assessment Program
for Intracerebral Transplantation in Huntington Disease (CAPIT-HD) 16,
which aims to establish the conditions under which each treated patient
can be used as his or her own control. It requires the repeated use, over
years, of a battery of clinical assessments and the quantification of
striatal metabolic activity by means of positron emission tomography.
In the current study, five patients with mild to moderate Huntington's
disease underwent two years of preoperative assessment. Patients first
had grafts of fetal nerve cells into the right striatum and then a year
later into the left striatum. A final assessment was made a year later.
A range of neuralgic and psychiatric tests were combined with repeated
magnetic resonance imaging and positron emission tomography scans to
assess metabolic activity. Results were compared with a control group of
22 untreated patients who were at a similar stage of the disease at the
beginning of the trial and who were followed-up in parallel with the
treated cohort.
Final assessment found increased metabolic activity in various parts of
the striatum in three of the five patients. Motor and cognitive functions
had either been maintained or improved and the patients were able to carry
out normal daily activities.
"Our results indicate that long-term stability of performance, and even
clinical improvements on some symptoms, can be seen in patients with
Huntington's disease after fetal neural allografting. These were seen,
however, in only three patients who participated in this pilot study. A
large-scale multicentre study is currently organised, with the aim of
confirming whether these early results are indicative of an actual
therapy applicable to patients with Huntington's disease," Dr Peschanski
and colleagues concluded.
Lancet 2000;356:1975-1979.
=== end of alsd 805 ===
ALS Digest #805 (11 February 2001)