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Date: Wed, 2 Jan 2002 18:01:06 EST
Reply-To: Parkinson's Information Exchange Network
<[log in to unmask]>
Sender: Parkinson's Information Exchange Network
<[log in to unmask]>
From: Kathleen Cochran <[log in to unmask]>
Subject: Re: The Dancer
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In a message dated 1/2/2002 5:47:19 PM, [log in to unmask] writes:
<< When the song was over and the dancer took leave,
The lesson was good for us all to believe.
For he taught me to think about what's really right.
Try not to be judging with all of your might. >>
Clay,
Ain't it the truth...and not judging does take all our might, doesn't it?
Greatly enjoyed your versified story. Thanks, and may you enjoy many more
festive desert nights!
Kathleen
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Date: Wed, 2 Jan 2002 17:29:35 -0800
Reply-To: [log in to unmask]
Sender: Parkinson's Information Exchange Network
<[log in to unmask]>
From: "Robert A. Fink, M. D." <[log in to unmask]>
Subject: Bill Harshaw
MIME-Version: 1.0
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Bill,
Are you still on the List? I need to communicate with you about a
project I am involved in locally. Please e-mail to me directly.
Many thanks,
Bob
**********************************************
Robert A. Fink, M. D., F.A.C.S., P. C.
2500 Milvia Street Suite 222
Berkeley, California 94704-2636
Telephone: 510-849-2555 FAX: 510-849-2557
WWW: http://www.rafink.com/
mailto:[log in to unmask]
"Ex Tristitia Virtus"
*********************************************
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Date: Wed, 2 Jan 2002 22:07:41 -0400
Reply-To: Pam Bower <[log in to unmask]>
Sender: Parkinson's Information Exchange Network
<[log in to unmask]>
From: Pam Bower <[log in to unmask]>
Subject: Talking with your Doctor: A Guide for Older People
Comments: To: sds <[log in to unmask]>, cbgd <[log in to unmask]>,
lbd <[log in to unmask]>,
PSP <[log in to unmask]>
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To view the guide go to:
http://www.nia.nih.gov/health/pubs/talking/p2.htm
Here's the announcement about this guide:
National Institute on Aging Announces Availability of "Talking with your
Doctor: A Guide for Older People"
Learn how to communicate effectively with your doctor and take an active
role in your health with the help of the National Institute on Aging's
booklet, "Talking with your Doctor: A Guide for Older People." First issued
in 1994, the new edition includes valuable guidelines on evaluating health
information on the World Wide Web.
In the past, the doctor typically took the lead and the patient followed.
Today, a good patient-doctor relationship is more of a partnership, with
both patient and doctor working together to solve medical problems and
maintain the patient's good health. This means asking questions if the
doctor's explanations or instructions are unclear, bringing up problems even
if the doctor doesn't ask, and letting the doctor know when a treatment
isn't working. The 30-page booklet is chock full of tips in areas such as:
Choosing a doctor you can talk to and why it matters.
Tips for good communication such as preparing for an appointment; giving and
receiving information to and from your doctor and other health
professionals.
Getting started with a new doctor by sharing your medical history,
medications, and habits.
Talking about your health in both physical and emotional terms, and;
Discussing sensitive subjects such as depression, sexual function, and
incontinence
For single or bulk copies of these Age Pages, call the NIA Information
Center weekdays between 8:30 a.m. and 5:00 p.m. toll free at 1-800-222-2225
or TTY 1-800-222-4225.
The NIA is part of the Department of Health and Human Services' National
Institutes of Health. The NIA is the lead federal agency supporting and
conducting biomedical, social, and behavioral research and training related
to aging and the diseases and special needs of older people.
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Date: Wed, 2 Jan 2002 22:54:40 EST
Reply-To: Parkinson's Information Exchange Network
<[log in to unmask]>
Sender: Parkinson's Information Exchange Network
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From: Rayilyn Brown <[log in to unmask]>
Subject: Re: Safe for sleep
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Carole, this is no help I know, but EVERYONE I know has trouble sleeping, PD,
stroke, meds, or not. Could it be age for some of us? Do younger Parkies
have trouble sleeping? Rayilyn
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Date: Wed, 2 Jan 2002 22:39:47 -0600
Reply-To: Parkinson's Information Exchange Network
<[log in to unmask]>
Sender: Parkinson's Information Exchange Network
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From: Terry Bowers <[log in to unmask]>
Subject: Re: Safe for sleep
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Hey Raylin -
Ask me in the morning 'round 3 a.m.
Terry
----- Original Message -----
From: "Rayilyn Brown" <[log in to unmask]>
To: <[log in to unmask]>
Sent: Wednesday, January 02, 2002 9:54 PM
Subject: Re: Safe for sleep
> Carole, this is no help I know, but EVERYONE I know has trouble sleeping,
PD,
> stroke, meds, or not. Could it be age for some of us? Do younger Parkies
> have trouble sleeping? Rayilyn
>
> ----------------------------------------------------------------------
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Date: Wed, 2 Jan 2002 23:52:57 EST
Reply-To: Parkinson's Information Exchange Network
<[log in to unmask]>
Sender: Parkinson's Information Exchange Network
<[log in to unmask]>
From: Kathleen Cochran <[log in to unmask]>
Subject: Re: Safe for sleep
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In a message dated 1/2/2002 10:56:56 PM, [log in to unmask] writes:
<< EVERYONE I know has trouble sleeping, PD,
stroke, meds, or not. Could it be age for some of us? Do younger Parkies
have trouble sleeping? >>
Yes, Rayilyn and Terry.,,
It does seem to me that a lot of us post email pretty late at night and early
in the morning.
Sometimes Sleepless on the Hudson,
Kathleen
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Date: Wed, 2 Jan 2002 21:42:24 -0800
Reply-To: Parkinson's Information Exchange Network
<[log in to unmask]>
Sender: Parkinson's Information Exchange Network
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From: Murray Charters <[log in to unmask]>
Subject: Repeat NEWS: Placebos: the little lies that can heal
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Placebos: the little lies that can heal
August 19, 2001
It's the greatest wonder drug of all time. It lifts your depression,
bolsters your sex life, relieves your chest pain, even makes your hair
grow.
It's the placebo, the dummy pill. Experts estimate that 30 percent of
any treatment's benefit comes from the expectation it will make you
better. Placebos are 60 percent as effective as the pain-relievers now
in your medicine cabinet.
Two thousand years after Hypocrates endorsed sham treatments,
they're still as popular as ever.
Except now, for the first time, there's a debate about whether the
"placebo effect'' is for real.
In May, Danish researchers concluded it's not. They looked at
8,500 placebo-taking volunteers in various studies. They reported
in the New England Journal of Medicine that placebos had no
effect on their illnesses. The University of Chicago's Dr. John
Bailar wrote the accompanying editorial: He says the effect of
placebos has been "grossly overstated.''
But last week, Canadian researchers showed the opposite.
They gave patients with Parkinson's disease injections
of saltwater. But they told those patients they were getting
a drug that would raise their levels of a brain chemical called
dopamine. The result? The dummy injections raised dopamine
levels 19 percent, just as much as injections of a real drug.
I'm not surprised. When I worked in the emergency room,
we routinely gave saltwater injections to Demerol abusers.
We told them it was Demerol, then we somberly told them
to lie on stretchers so they wouldn't collapse when the
narcotic hit. Minutes after their injections, they'd be
pleasantly asleep.
We even stocked placebo pills, impressive horse-size tablets
with polka dots. We jokingly named the pills "placebin.''
Such pills are still used all the time but not so obviously.
They're used when your harried doctor gives you an
antibiotic for what he knows is a simple cold. Or he gives
you allergy pills for what he knows is no allergy at all
(a recent study found two-thirds of patients who get
allergy pills lack allergies).
You get the pills partly to get you out of the office, but
also because many doctors still believe you benefit more
from a useless drug than from no drug at all.
And many studies back that up: They show placebos
don't just make people "feel better,'' they produce physical
changes that are hard to believe.
In baldness studies, researchers count the hairs of rapidly
balding men. In one study, 42 percent of men taking a
placebo either grew hair or had no further hair loss. Other
studies show placebos open up the lungs of asthmatics
and make warts disappear.
Placebos have power, but that includes the power to harm.
First, to harm the doctor-patient relationship. "It's basically
a kind of deception,'' says Bailar. Placebos may have been
called "lies that heal.'' But they're still lies. And lies create
mistrust.
And placebos harm doctors. Physicians don't like deceiving
people any more than anyone else.
And patients don't like being duped. When study volunteers
find out they're taking placebos, many feel insulted. Worse,
their illness soon comes back, more aggressive than ever.
Even the sham treatments themselves can be harmful,
as when surgeons tested fetal brain implants by cutting
into some patients brains and giving them no treatment
at all. Researchers said the sham surgery was necessary
because the cutting, pain and scars of surgery have a
healing power all their own.
The placebo effect is a two-edged sword. It's voodoo,
deceit, and a reminder of just how little we understand.
But it does exist, and it can heal.
Dr. Michael Breen is the medical editor at
WBBM-Channel 2.
SOURCE: The Chicago Sun Times
http://www.suntimes.com/output/health/cst-nws-breen19.html
* * *
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Date: Wed, 2 Jan 2002 21:53:17 -0800
Reply-To: "Carole K. Menser" <[log in to unmask]>
Sender: Parkinson's Information Exchange Network
<[log in to unmask]>
From: "Carole K. Menser" <[log in to unmask]>
Subject: Re: Safe for sleep
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Ted does.
-----Original Message-----
From: Kathleen Cochran <[log in to unmask]>
To: [log in to unmask] <[log in to unmask]>
Date: Wednesday, January 02, 2002 8:53 PM
Subject: Re: Safe for sleep
>In a message dated 1/2/2002 10:56:56 PM, [log in to unmask] writes:
>
><< EVERYONE I know has trouble sleeping, PD,
>stroke, meds, or not. Could it be age for some of us? Do younger Parkies
>have trouble sleeping? >>
>
>Yes, Rayilyn and Terry.,,
>
>It does seem to me that a lot of us post email pretty late at night and
early
>in the morning.
>
>Sometimes Sleepless on the Hudson,
>Kathleen
>
>----------------------------------------------------------------------
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Date: Wed, 2 Jan 2002 22:22:49 -0800
Reply-To: "Carole K. Menser" <[log in to unmask]>
Sender: Parkinson's Information Exchange Network
<[log in to unmask]>
From: "Carole K. Menser" <[log in to unmask]>
Subject: TED
MIME-Version: 1.0
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Well, good and not so good news. I finally got in the neuro's face =
today about the dilantin and he is taking him off that tomorrow and =
starting tegretol (spelling?). But he really didn't want to. Not so =
good news is that he thinks Ted is doing so well and wants to discharge =
him Friday. Meanwhile, Ted is a fall risk, confused, has conversations =
that make no sense and still having many seizures. The seizure activity =
is apparent in his frequent blank stare and rapid movements of his eyes.
The doctor spends five minutes and just because he gets the right =
answers to a few questions thinks that is a thorough evaluation! In =
fact, he didn't get the correct answers to just as many of his questions =
but chooses to overlook that. He said, oh don't worry about the =
confusion, it's the seizures and the meds for that. WELL, DUH.
So that is my venting for the night. I am tired and discouraged about =
maybe not being able to go back to my job . . . and what if Ted falls??? =
I can't get him up. This doctor won't listen to anyone. It is =
difficult enough to deal with and fight all of this but then to have to =
fight the neuro on top of it all.
I intend to contact the hospital social worker tomorrow and try to go on =
record as stating that I consider this an unsafe discharge if he does go =
home Friday. Any other suggestions? I sure hope this med change works =
a miracle for him. I will also try cutting back on some of his PD meds =
since he is not so active right now anyway and probably doesn't need as =
much. In an ideal world, I could consult with his neuro about this. =
However, I have been consulting with his neuro . . . so what's the =
point. He thinks Comtan and Tasmar are exactly identical. Wish we had =
another choice and I am going to see about going neuro-shopping out of =
town. But everything else around here is smaller than us. No neuros in =
sight.
Sorry for the length of this. Hopefully, this story will have a happy =
ending. Thanks for all your prayers.
Carole
spouse of Ted 54/46/40
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Date: Wed, 2 Jan 2002 22:23:21 -0800
Reply-To: Parkinson's Information Exchange Network
<[log in to unmask]>
Sender: Parkinson's Information Exchange Network
<[log in to unmask]>
From: Murray Charters <[log in to unmask]>
Subject: News & Views From The Overnight Newswire - Jan 2nd. 2002
MIME-Version: 1.0
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Good Morning All,
Here's the overnight "News & Views".... from the on-line media....
Cheers ........ murray
NEBRASKA: Most Senators Oppose Fetal Tissue Research
http://legis.journalstar.com/stories/383
NEWS: Human Heart Can Repair Itself, Study Suggests
http://dailynews.yahoo.com/h/nm/20020102/hl/heart_3.html
BBC: Treatment for nerve disorder (SPS)
http://news.bbc.co.uk/hi/english/health/newsid_1722000/1722143.stm
BOSTON: Charity drive - The Giving Back Fund
http://www.boston.com/dailyglobe2/001/living/Charity_drive+.shtml
NEWS: Pig-to-human transplants just years away - PPL
http://www.ananova.com/news/story/sm_485831.html?menu=news.scienceanddiscovery
* * *
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Date: Thu, 3 Jan 2002 06:57:50 -0500
Reply-To: Parkinson's Information Exchange Network
<[log in to unmask]>
Sender: Parkinson's Information Exchange Network
<[log in to unmask]>
From: Linda J Herman <[log in to unmask]>
Subject: Re: TED
MIME-Version: 1.0
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Hi Carol,
I have been reading your postings and i'm really sorry to hear about
Ted's condition and the kind of care he's receiving. There seem to be
many difficult experiences faced by PWP when they are hospitalized. I
think it is a good idea to try to get a hospital social worker to
advocate for you and come up with a discharge plan that addresses your
concerns about home care. Also - Is there any type of patient advocate's
program in the hospital?
My son has epilepsy and has been on Tegretol for over 10 years now - it
is supposed to be proven safe and effective - He's had good control of
seizures and no side effects - although he isn't taking all the PD meds
too. Is there a pharmacist you could check with about possible
interactions?
I will be thinkinig of you and Ted, and hoping he sees improvement soon.
Best wishes,
Linda
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Date: Thu, 3 Jan 2002 07:56:45 -0500
Reply-To: Parkinson's Information Exchange Network
<[log in to unmask]>
Sender: Parkinson's Information Exchange Network
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From: plmaddux <[log in to unmask]>
Subject: Re: Fw: PARKINSON WEIGHT LOSS
MIME-Version: 1.0
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Nita and list friends,
Just a little info on this subject, I have always been skinny, 6'1" and 150
lbs. I am a 6 year PWP now. I have been on Mirapex about 4 months.
I saw an article in the paper written by a doctor and he told a teen-age boy
to eat peanut butter and jelly sandwiches in order to gain weight. I have
been eating them regularly but not every day. I have a good appetite and eat
a low red meat high fiber diet. I now weigh 171 lbs, gained slowly over the
last two years.
So taking Mirapex and being a PWP has not caused me to lose weight. If I am
doing anything else to gain weight I don't know what it is. By the way, I
like the "extra crunchy" on Branola, a high fiber bread, it has 3 grams of
fiber per slice which helps my GI tract to keep functing well, prevent
constipation which has always been a problem for me.
Lanier Maddux Chattanooga Tn
----------------------------------------------------
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Only $9.95 per month!
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Date: Thu, 3 Jan 2002 05:58:35 -0800
Reply-To: "Carole K. Menser" <[log in to unmask]>
Sender: Parkinson's Information Exchange Network
<[log in to unmask]>
From: "Carole K. Menser" <[log in to unmask]>
Subject: Re: TED
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Linda --
I am a social worker (with an M.A. in Behavioral Science) and victim rights
advocate for the elderly and dependent adults. I work for a state funded
program whose target population is underserved victims of crime in those
categories. I do not believe there is a patient's rights advocate at this
hospital but I do know the social workers through professional contact and
do intend to try to pursue that avenue. I also work closely with Shasta
County Adult Protective Services. They, of course, intervene only within
the parameters of their criteria: over 65 or dependent adult, client at risk
with no help from family and fails at home. Sometimes it's a pretty dismal
picture as I see it every day. As is the fact that I might be not be able
to do that any more.
Must get ready to go to the hospital but want to leave you with a little
humor. The neuro's main objection that he came up with to changing to
Tegretol was that Ted would have to take two pills a day instead of just one
dilantin!!!! I have to tell you, I just stood there rather speechless.
There must be a good joke in that like how many pills must a doctor give for
PD in order to be a neurologist or something. I mean, how many pills do
most PWP's take. Oh well.
See you all later. I'm sorry for the personal nature of these messages on
the list but I am too busy and tired right now to message everyone
individually. Thanks for you patience and understanding.
Love,
Carole
-----Original Message-----
From: Linda J Herman <[log in to unmask]>
To: [log in to unmask] <[log in to unmask]>
Date: Thursday, January 03, 2002 4:19 AM
Subject: Re: TED
>Hi Carol,
>I have been reading your postings and i'm really sorry to hear about
>Ted's condition and the kind of care he's receiving. There seem to be
>many difficult experiences faced by PWP when they are hospitalized. I
>think it is a good idea to try to get a hospital social worker to
>advocate for you and come up with a discharge plan that addresses your
>concerns about home care. Also - Is there any type of patient advocate's
>program in the hospital?
>My son has epilepsy and has been on Tegretol for over 10 years now - it
>is supposed to be proven safe and effective - He's had good control of
>seizures and no side effects - although he isn't taking all the PD meds
>too. Is there a pharmacist you could check with about possible
>interactions?
>I will be thinkinig of you and Ted, and hoping he sees improvement soon.
>Best wishes,
>Linda
>
>----------------------------------------------------------------------
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>
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Date: Thu, 3 Jan 2002 06:21:40 -0800
Reply-To: Parkinson's Information Exchange Network
<[log in to unmask]>
Sender: Parkinson's Information Exchange Network
<[log in to unmask]>
From: Murray Charters <[log in to unmask]>
Subject: Placebos and Parkinson's
Comments: cc: Murray Kastner <[log in to unmask]>
MIME-Version: 1.0
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Good Morning Murray Kastner and Good Morning All,
The latest news on the placebo effect vs Parkinson's
was a study released in August 2001... The study was
a Canadian one done by a team at UBC here in Vancouver
(headed by my neuro Dr. Jon Stoessl)
I thought I had it archived somewhee but couldn't find it.
This morning I found the references....
Placebo mimics drug effects on Parkinson's brains.
10 August 2001
http://www.nature.com/nsu/010816/010816-1.html
MEDICINE
Parkinson's Patients Feel the Placebo Effect
http://www.sciam.com/news/081001/2.html
All in the Mind
FACT OR ARTIFACT? THE PLACEBO EFFECT
MAY BE A LITTLE OF BOTH
http://www.sciam.com/2001/1001issue/1001scicit2.html
The Placebo Effect and Parkinson's
http://spring.parkinsons.org.uk/SPRING_Times/21/12.html
Earlier trials of a different nature also mentioned placebo
surgery...
Fetal Cell Therapy Benefits Some Parkinson's Patients:
First Controlled Clinical Trial Shows Mixed Results
For release: Wednesday, April 21, 1999
http://www.ninds.nih.gov/news_and_events/freedfinal.htm?type=archived
cheers ..... murray
* * *
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Date: Thu, 3 Jan 2002 08:09:46 -0800
Reply-To: Parkinson's Information Exchange Network
<[log in to unmask]>
Sender: Parkinson's Information Exchange Network
<[log in to unmask]>
From: Bonnie Clay Riley <[log in to unmask]>
Subject: Re: Placebos and Parkinson's
MIME-Version: 1.0
Content-Type: text/plain; charset="iso-8859-1"
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Hi Murray good to see you back and how is your back? Have you seen Dr.
Stoessl's video "New Developments in Parkinson's". I thought it was quite
good (my neuro also).
Happy New Year
Bonnie
----- Original Message -----
From: "Murray Charters" <[log in to unmask]>
To: <[log in to unmask]>
Sent: Thursday, January 03, 2002 6:21 AM
Subject: Placebos and Parkinson's
> Good Morning Murray Kastner and Good Morning All,
>
> The latest news on the placebo effect vs Parkinson's
> was a study released in August 2001... The study was
> a Canadian one done by a team at UBC here in Vancouver
> (headed by my neuro Dr. Jon Stoessl)
>
> I thought I had it archived somewhee but couldn't find it.
>
> This morning I found the references....
>
> Placebo mimics drug effects on Parkinson's brains.
> 10 August 2001
> http://www.nature.com/nsu/010816/010816-1.html
>
> MEDICINE
> Parkinson's Patients Feel the Placebo Effect
> http://www.sciam.com/news/081001/2.html
>
> All in the Mind
> FACT OR ARTIFACT? THE PLACEBO EFFECT
> MAY BE A LITTLE OF BOTH
> http://www.sciam.com/2001/1001issue/1001scicit2.html
>
> The Placebo Effect and Parkinson's
> http://spring.parkinsons.org.uk/SPRING_Times/21/12.html
>
> Earlier trials of a different nature also mentioned placebo
> surgery...
>
> Fetal Cell Therapy Benefits Some Parkinson's Patients:
> First Controlled Clinical Trial Shows Mixed Results
> For release: Wednesday, April 21, 1999
> http://www.ninds.nih.gov/news_and_events/freedfinal.htm?type=archived
>
> cheers ..... murray
>
> * * *
> [log in to unmask]
>
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Date: Thu, 3 Jan 2002 11:42:31 EST
Reply-To: Parkinson's Information Exchange Network
<[log in to unmask]>
Sender: Parkinson's Information Exchange Network
<[log in to unmask]>
From: Robert Mushinsky <[log in to unmask]>
Subject: Re: Placebos and Parkinson's
MIME-Version: 1.0
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In a message dated 1/3/2002 11:41:21 AM Eastern Standard Time,
[log in to unmask] writes:
> Have you seen Dr.
> Stoessl's video "New Developments in Parkinson's".
How can one order this video? Thanks
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Date: Thu, 3 Jan 2002 13:09:35 -0800
Reply-To: Parkinson's Information Exchange Network
<[log in to unmask]>
Sender: Parkinson's Information Exchange Network
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From: Don McKinley <[log in to unmask]>
Subject: SLEEPING
MIME-Version: 1.0
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THERE HAS TO ALWAYS ONE IN BUNCH AND I GUESS IT'S ME. I A MM 77 HAD PD =
FOR 30 YEARS. I DO TAKE DILANTN AND KOPLIN (SPELLED) U CAN SET U.R =
CLOCK BY ME AT 3;30 am THEN AT 6;45 am my 4 legged LESBIAN(beagle) =
COMES AND GETS ME UP. AT 6:55 SHE GOESE TO THE BOTTEY OUT SIDE AS WE =
HAVE A DOG DOOR. AT 7:01 SHES BACK TILL 7:25 SHE KEEPS AFTER ME TILL I =
GET UP WANT 4 BACON TREATS. REST OF THE DAY WILL NOT COME CLOSE TO ME =
AS SHE IS A WOMEN DOG. WE BACK TO MY STORY AS LONG AS I CAN =
REMEMBER(OUT SIDE OF WAR YEARS) I WENT TO BED AT 11:00 PM TOLD U WHEN I =
GOT UP. ONLY GO TO BED WHEN U FEEL SLEEPY. OR TRY A SAME TIME EVERY =
NIGHT. EVEN IF NOT SLEEPY. MY NERO SAYS DON THE REASON U R DOING SO =
GOOD IS U ARE JUST BULL HEADED. LIKE ALL PDER I FALL LOT HAVE BAD AND =
GOOD DAYS. GET PARONOD. CAN'T WALK BUT I WILL SOME DAY. HOW CAN U GET =
A 20 YEAR OLD TO KISS U IN WHEELCHAIR? AND LOOK SLEEPY. IN TIME U WILL =
FIND OUT WHAT IS BEST FOR U. TOOK ME YEARS TO LEARN. WE ARE NOT DUMB =
JUST TAKES US LONGER TO ADD,2&2 TO GET 4. AS U C ON LIST U GOT COMPANY. =
SO FOR A NIGHT'S REST FOR ALL. KEEP IN MIND A RESTFULL PLACE AND HOW =
NICE IT WOULD BE TO TAKE A NAP.=20
I.Y.Q. DON AND VIVIAN
LOVE OF MY LIVE 56
BEST MED FOR PD IS
GOOD NIGHT SLEEP
[log in to unmask]
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Date: Thu, 3 Jan 2002 13:12:43 EST
Reply-To: Parkinson's Information Exchange Network
<[log in to unmask]>
Sender: Parkinson's Information Exchange Network
<[log in to unmask]>
From: Ed Grskovich <[log in to unmask]>
Subject: Re: Repeat NEWS: Placebos: the little lies that can heal
MIME-Version: 1.0
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In a message dated 1/2/02 11:47:09 PM, [log in to unmask] writes:
<< We even stocked placebo pills, impressive horse-size tablets
with polka dots. >>
What an important effect it could be if my memory is correct that the WSJ,
years ago, reported on a study that showed that different color placebo pills
helped "cure" differently according to their colors in relation to the
apparent sickness. In other words, some placebo colors might work better on
some illnesses than on others. The effect of polka dots was not covered by
the study--nor, was the use of rose-colored glasses.
By the way, how much was the patient charged for those impressive pills?
Covered by insurance?
Ed g
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Date: Thu, 3 Jan 2002 12:33:49 -0600
Reply-To: Parkinson's Information Exchange Network
<[log in to unmask]>
Sender: Parkinson's Information Exchange Network
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From: Jo Ann Coen <[log in to unmask]>
Subject: Re: Repeat NEWS: Placebos: the little lies that can heal
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Murrayy - Just goes to show you. Most of the time, it's just mind over
matter. Jo Ann
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Date: Thu, 3 Jan 2002 12:16:15 -0600
Reply-To: Parkinson's Information Exchange Network
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Sender: Parkinson's Information Exchange Network
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From: Jo Ann Coen <[log in to unmask]>
Subject: Re: The Dancer
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Clay - I really enjoyed "The Dancer". Many people thought my love was
eiher drunk or had a hangover (staggering and tremors). I can certainly
relate to that. They also had a tendency to interrupt him in
mid-sentence, either because he was speaking so slowly, or when he
searched for a word, they thought he was through. Some even ignored him
as if he wasn't there. When I was with him, I would always come back to
him and say, "And what were you saying?" But I truly believe it's
because people don't understand and not because they are stupid. Best
wishes, Jo Ann
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Date: Thu, 3 Jan 2002 12:03:39 -0600
Reply-To: Parkinson's Information Exchange Network
<[log in to unmask]>
Sender: Parkinson's Information Exchange Network
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From: Jo Ann Coen <[log in to unmask]>
Subject: Re: Fw: PARKINSON WEIGHT LOSS
MIME-Version: 1.0
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Emily and Nita - My love lost from 190 lbs (he's 6'1") to 150 in less
than a year. He has Parkinson's Plus or as known in some circles, MSA.
He was dx'd in 1997, but didn't lose too much weight until 2000.
Hopefully, your PWP's won't, but many do. Jo Ann
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Date: Thu, 3 Jan 2002 12:31:12 -0600
Reply-To: Parkinson's Information Exchange Network
<[log in to unmask]>
Sender: Parkinson's Information Exchange Network
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From: Jo Ann Coen <[log in to unmask]>
Subject: Re: Safe for sleep
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Rayilyn, Terry and Kathleen - Yes, most PWP's have a hard time sleeping
at night. Don't know if it's from the disease itself, or from the meds,
or might be because his body is so tuned to the "up" times and the "down
" times, that it wakes him up. . Many a night my love would be up
between 2 and 4, watching TV. When I questioned him, he said, just can't
sleep. Now that he's moved out of state, I receive e's from him that
were written at anytime between 2 and 4. Sometimes, I even get a phone
call, because he just wants to talk, whether it is from loneliness or
fear of the unknown or what, I receive them with pleasure. Best wishes,
Jo Ann
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Date: Thu, 3 Jan 2002 16:26:17 -0600
Reply-To: Parkinson's Information Exchange Network
<[log in to unmask]>
Sender: Parkinson's Information Exchange Network
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From: George Docken <[log in to unmask]>
Subject: Re: Safe for sleep
Comments: To: "Carole K. Menser" <[log in to unmask]>
MIME-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Carole,
At night, I frequently use an herbal suppliment called Valerian in
tablet form. It's a muscle relaxer, I think. Another thing that helps me
sleep (I don't know why) is to take two TUMS tablets. I don't have a
professional medical endorsement for this. I just tried it. It would be
a good idea toget a doctor or pharmacist opinion before proceeding.
Regards, George
"Carole K. Menser" <[log in to unmask]>
Sent by: Parkinson's Information Exchange Network
<[log in to unmask]>
01/01/2002 03:22 AM
Please respond to "Carole K. Menser"
To: [log in to unmask]
cc:
Subject: Safe for sleep
If anyone is awake out there, what is a safe sleep medication for a PWP?
The hospital just called. They are having trouble getting Ted to sleep for
any length of time at the hospital.
Carole
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Date: Thu, 3 Jan 2002 17:58:44 EST
Reply-To: Parkinson's Information Exchange Network
<[log in to unmask]>
Sender: Parkinson's Information Exchange Network
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From: [log in to unmask]
Subject: For those who receive Canadian radio
Comments: To: [log in to unmask]
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Hi All -
Last September an interviewer from Canada's Radio One network was here in my
Rhode Island home. We discussed the pig-cell implant procedure
(xenotransplantation) that was performed on me in 1996. The operation was
designed to test the safety aspects of this surgical approach to Parkinson's
Disease.
The interview has been scheduled for broadcast on Sunday, January 6, sometime
between 9 - 11 AM. Tune into "This Morning's" weekend program "Sunday
Edition."
For more information go to this URL:
<A HREF="http://www.geocities.com/jimcfinn/index.html">
http://www.geocities.com/jimcfinn/index.html</A>
Jim Finn
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Date: Thu, 3 Jan 2002 17:57:12 -0800
Reply-To: "Carole K. Menser" <[log in to unmask]>
Sender: Parkinson's Information Exchange Network
<[log in to unmask]>
From: "Carole K. Menser" <[log in to unmask]>
Subject: More on Ted
MIME-Version: 1.0
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Was at hospital before 7 am so I could catch his attending doctor. He =
was not in good shape when I arrived -- seizing about 50% of the time as =
was obvious to me by his gaze to the left with eyes rapidly moving back =
and forth. And, of course, you couldn't reach him verbally during those =
times. Doctor finally saw for herself as did her supervising physician =
when he came in later. Frequent petit mal seizures was the conclusion. =
I also asked her how do I get a second opinion. Then I just told them =
flat out how I felt about the neuro and not to worry because we will be =
finding a new one anyway. Lady doc told me this isn't the first time =
they've heard that by any means and she told me about a new one in town. =
We have a grand total of 3 (make that 2 and 1/2 IMHO). Both docs now =
on my side, so to speak. It's a shame to have to say that. You would =
think that everyone would be working together for the good of the =
patient. The supervising doc had Ted moved to ICU to try to monitor =
what is going on and they have ordered another CT scan for tonight. Sup =
doc asked me to stay with our neuro at least for today so that he could =
order the transfer. So I agreed but told them I'd had it with him. =
Lady doc told me that I could speak to the Chief of Staff if I wanted a =
change in neuros. I told them don't worry, I would if need be and I =
have the hospital's (and State of California's) own Advanced Directives =
handbook for my ammunition. It says that we have the right to a =
physician who will clearly discuss with us and explain to us all =
treatment options and clearly communicate all medical conditions and =
expected outcomes, prognoses, etc. so that patients and their families =
can make informed decisions for themselves.
Ted is being slowly taken off dilantin. They are loading him with =
Tegretol and Ativan in an attempt to break the seizures. He is quite =
out of it right now due to the Ativan. EEG outcome from yesterday is =
not yet known. Lumbar puncture is negative for infection in the =
spinal/cerebral fluid. His care in ICU is much better (that wouldn't =
take much . . . the Sisters of Mercy would all roll over in their graves =
if they could see what goes on in that Intermediate Care Unit!!!) The =
care is about as intermediate as it gets. Wonderful male nurse in ICU. =
He brought me the meds order sheet and told me we had the right to =
refuse any of those meds. I refused the Requip (his newest PD med and =
only now at .025 mg. anyway). I refused the Remeron unless needed since =
the Ativan has him asleep most of the time so what's the point of that =
anyway. Plus he is so tired from all the seizure activity. I refused =
200 mg/doses of Tasmar in favor of 100 mg doses. And I told the nurse =
not to worry if he misses some of his Sinemet. Nurse told me he =
wouldn't force Sinemet if Ted is sleeping. He isn't active right now =
and every two hours is probably too much. I asked Ted if any of his PD =
symptoms were bothering him and he said no and that it felt wonderful. =
Dilantin has been cut by 1/3 to titrate down to zero.
Time will tell. I also informed them that they might want to get his =
bowels moving ASAP or they could have another real issue on their hands. =
They listened and his bowel sounds are flat (no movement). That has =
been taken care of too. And, of course, the Sup doc told me that they =
definitely won't be sending him home tomorrow. So I can sleep much =
better tonight.
Not a bad 10 hours work for me, would you say? :-)
Love to all and keep praying for them to uncover the problem . . . =
something is wrong and we need to know what it is in order to fight it. =
I've told him about all who have called and messaged and sent their love =
and prayers. Don't think much is registering right now though.
Carole
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Date: Thu, 3 Jan 2002 18:19:33 -0800
Reply-To: "Carole K. Menser" <[log in to unmask]>
Sender: Parkinson's Information Exchange Network
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From: "Carole K. Menser" <[log in to unmask]>
Subject: BTW
MIME-Version: 1.0
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I know about Ativan and levadopa therapy. His admitting diagnosis was =
status epilepticus (he was in seizure for over an hour) and Ativan is =
the drug of choice for that. I'm not real happy about it but something =
has to be done to break the seizures. Hopefully he will tolerate it =
well. Dilantin obviously wasn't doing the trick.
Carole :-)
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Date: Thu, 3 Jan 2002 22:12:49 -0500
Reply-To: [log in to unmask]
Sender: Parkinson's Information Exchange Network
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From: Perry Cohen <[log in to unmask]>
Subject: 176 Medicines in the Pipeline for Neurological Diseases
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Below are excerpts from recent Press Release on a PhRMA survey. Included
are numbers to call for follow-up information and/or participation in
the study
Perry Cohen
Washington DC
www.parkinsonscare.org
http://www.phrma.org/searchcures/newmeds/neurologic2001/
December 17, 2001
PhRMA Survey Finds 176 Medicines in the Pipeline for Neurological
Diseases
A new survey found 176 new medicines in development for neurologic
diseases - up from 138 when the previous survey was conducted in 1999.
More than 100 pharmaceutical and biotechnology companies are conducting
this research, according to the Pharmaceutical Research and
Manufacturers of America (PhRMA).
"Pharmaceutical company researchers are using significant new knowledge
about how the brain works to help patients with Alzheimer's, stroke,
Parkinson's and other diseases," said PhRMA President Alan F. Holmer.
The potential new medicines include:
16 for Parkinson's disease, which affects 1 out of every 100 Americans
over age 60:
P A R K I N S O N’ S D I S E A S E
Product Name Company Indication Development Status
Altropane™ Boston Life Sciences, Boston, MA imaging agent for early
diagnosis of Parkinson’s disease Phase III completed (617) 425-0200
CEP-1347 Cephalon: West Chester, PA. Phase II (610) 344-0200
KW-6002 Kyowa Pharmaceutical; Princeton, NJ Phase II (609) 919-1100
Neotrofin leteprinim potassium (AIT-082) NeoTherapeutics Irvine, CA
Phase II (949) 788-6700
NeuroCell™-PD (Orphan Drug) Diacrin Charlestown, MA; Genzyme General
Cambridge, MA Phase II/III (617) 242-9100
neuroimmunophilin ligand (NIL-A) Guilford Pharmaceuticals Phase II
completed Baltimore, MD (410) 631-6449
ReQuip ® ropinirole (controlled-release formulation) GlaxoSmithKline,
Rsch. Triangle Park, NC;HCI Philadelphia, PA; SkyePharma San Diego, CA
Phase II, (888) 825-5249
SLU308 Solvay Pharmaceuticals; Marietta, GA Phase II,(770) 578-5581
Spheramine™ human retinal pigment epithelial cells on microcarriers
(Orphan Drug), Titan Pharmaceuticals; South San Francisco, CA Phase
I/II (650) 244-4990
SPM 962 transdermal patch Schwarz Pharma Mequon, WI early and advanced
Parkinson’s disease Phase II completed (800) 558-5114
SR 57667 Sanofi-Synthelabo, New York, NY (see also Alzheimer’s disease)
Phase I (212) 551-4000
sumanirole (PNU 95666) Pharmacia;Peapack,NJ Phase II(888) 768-5501
Sygen ® Fidia Pharmaceutical Washington, DC (monosialogan-glioside GM1;
see also spinal cord injury) Phase III (202) 371-9898
TV-1203 (etilevodopa) TEVA Pharmaceutical;North Wales, PA USA. Phase
III (215) 591-3000
TVP-1012 (rasagiline)TEVA Pharmaceuticals; North Wales, PA, USA Phase
III (215) 591-3000
Zelapar™ selegiline Amarin Pharmaceuticals; Warren, NJ in clinical
trials (908) 580-5535
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Date: Thu, 3 Jan 2002 22:29:26 EST
Reply-To: Parkinson's Information Exchange Network
<[log in to unmask]>
Sender: Parkinson's Information Exchange Network
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From: Rayilyn Brown <[log in to unmask]>
Subject: Re: Safe for sleep
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Terry, that's about when I wake up the first time. I could never access
your email on drs. rayilyn
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Date: Thu, 3 Jan 2002 22:31:43 EST
Reply-To: Parkinson's Information Exchange Network
<[log in to unmask]>
Sender: Parkinson's Information Exchange Network
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From: Rayilyn Brown <[log in to unmask]>
Subject: Re: Safe for sleep
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Kathleen, I feel my "best"at night. Just think of all of us out there. Good
thing we have computers. Rayilyn
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Date: Thu, 3 Jan 2002 20:59:48 -0800
Reply-To: Parkinson's Information Exchange Network
<[log in to unmask]>
Sender: Parkinson's Information Exchange Network
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From: Murray Charters <[log in to unmask]>
Subject: Re: 176 Medicines in the Pipeline for Neurological Diseases
In-Reply-To: <[log in to unmask]>
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On 3 Jan 2002, at 22:12, Perry Cohen wrote:
> Below are excerpts from recent Press Release on a PhRMA survey. Included
> are numbers to call for follow-up information and/or participation in
> the study
>
> Perry Cohen
> Washington DC
> www.parkinsonscare.org
>
> http://www.phrma.org/searchcures/newmeds/neurologic2001/
>
Hi Perry,
I was just lookin' at these links when your timely e-mail arrived....
New Medicines in Development
There are three ways to search the PhRMA
New Medicine in Development WebDatabase:
Search by Disease; Indication; Drug
http://www.phrma.org/searchcures/newmeds/webdb/
New Medicines in Development
for Neurologic Disorders: A 2001 Survey
http://www.phrma.org/searchcures/newmeds/neurologic2001/
New Medicines in Development
for Parkinson's Disease
http://www.phrma.org/searchcures/newmeds/webdb/drugs.phtml?indication=219
cheers ......... murray
* * *
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Date: Thu, 3 Jan 2002 21:52:33 -0800
Reply-To: Parkinson's Information Exchange Network
<[log in to unmask]>
Sender: Parkinson's Information Exchange Network
<[log in to unmask]>
From: Murray Charters <[log in to unmask]>
Subject: News & Views From The Overnight Newswire - Jan 3rd. 2002
MIME-Version: 1.0
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Good Morning All,
Here's the overnight "News & Views".... from the on-line media....
There are updated PhRMA sites.... And....
Xenotransplantation is the News biggie today....
Cheers ........ murray
Directory of Rx Drugs Patient Assistance Programs
The research-based pharmaceutical industry has had
a long-standing tradition of providing prescription medicines
free of charge to physicians whose patients might not
otherwise have access to necessary medicines.
To make it easier for physicians to identify the growing
number of programs available for needy patients, member
companies of the Pharmaceutical Research and Manufacturers
of America (PhRMA) created this directory. It lists company
programs that provide drugs to physicians whose patients
could not otherwise afford them. The programs are listed
alphabetically by company. Under the entry for each program
is information about how to make a request for assistance,
what prescription medicines are covered, and basic eligibility
criteria.
http://www.phrma.org/searchcures/dpdpap/
STUDY: New Medicines in Development for Parkinson's Disease
http://www.phrma.org/searchcures/newmeds/webdb/drugs.phtml?indication=219
PAKISTAN: Neurology a leading clinical discipline
for effective care to patients
http://www.hipakistan.com/htmls/health/health_news.html
ARTICLE: Scientists Hail Transplant Breakthrough
The possibility of transplanting pig organs into humans
has come a step closer... (check out the video..)
http://www.sky.com/skynews/article/0,,30700-1039804,00.html
ARTICLE: 'Ultimate Pig' May Benefit Humans
http://dailynews.yahoo.com/h/ap/20020102/hl/genetically_altered_pigs_1.html
ARTICLE: Pigs cloned with organs designed for human transplants
http://www.portal.telegraph.co.uk/news/main.jhtml?xml=/news/2002/01/04/npigs04.xml&sSheet=/news/2002
ARTICLE: GM pig organ transplants 'years away'
http://www.portal.telegraph.co.uk/news/main.jhtml?xml=/news/2002/01/04/npigs04.xml&sSheet=/news/2002/01/04/ixhome.html
* * *
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Date: Thu, 3 Jan 2002 23:41:43 -0600
Reply-To: Parkinson's Information Exchange Network
<[log in to unmask]>
Sender: Parkinson's Information Exchange Network
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From: Jo Ann Coen <[log in to unmask]>
Subject: Re: Safe for sleep
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George - Funny you should mention Tums. I also take Tums when I have a
hard time going to sleep, or when I wake up in the middle of the night.
However, I take three. Best wishes, Jo Ann
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Date: Fri, 4 Jan 2002 05:17:56 -0800
Reply-To: Parkinson's Information Exchange Network
<[log in to unmask]>
Sender: Parkinson's Information Exchange Network
<[log in to unmask]>
From: Carole Hercun <[log in to unmask]>
Subject: S.O.S. / Job Elimination
MIME-Version: 1.0
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Dear Friends:
The members of PIEN are some off the smartest, most
well-informed people I know. You are a virtual encyclopedia
of resources. So I have come to you with for help with an
urgent problem.
I have long debated how long I could continue my job as a
job as a psychiatric nurse. Several months ago, I
voluntarily decreased my hours from 40 to 30. I thought I
could maintain at that level for a while, since I worked in
the out-patent part of the hospital, with regular hours,
M-F, more stable patients,and lots of computer/desk duties,
with frequent opportunities to rest.
Yesterday I was informed that my job would be eliminated in
two weeks. I was given the option of working the in-patient
units. Which, of course, they realize I cannot do. Rotating
shifts, week-ends & holidays, extremely ill patients,
frequent codes, and incessant stress. Not something a 55
year old PWP can handle.
I know they can't discriminate against me because of my
disability, but can they simply eliminate me? What should I
do next? I thought I had time to mull over my options.
Unfortunately, since the hospital ambushed me, the time is
NOW.
Carole Hercun
__________________________________________________
Do You Yahoo!?
Send your FREE holiday greetings online!
http://greetings.yahoo.com
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Date: Fri, 4 Jan 2002 07:31:11 -0600
Reply-To: Parkinson's Information Exchange Network
<[log in to unmask]>
Sender: Parkinson's Information Exchange Network
<[log in to unmask]>
From: Terry Bowers <[log in to unmask]>
Subject: Re: S.O.S. / Job Elimination
MIME-Version: 1.0
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As much as I hate to say it- get thee a lawyer -or- contact the feds. Job
discrimination based on disability is a Federal Offense. Don't do the Parky
thing of "I'll get to it tomorrow..." CALL TODAY!
----- Original Message -----
From: "Carole Hercun" <[log in to unmask]>
To: <[log in to unmask]>
Sent: Friday, January 04, 2002 7:17 AM
Subject: S.O.S. / Job Elimination
> Dear Friends:
> The members of PIEN are some off the smartest, most
> well-informed people I know. You are a virtual encyclopedia
> of resources. So I have come to you with for help with an
> urgent problem.
> I have long debated how long I could continue my job as a
> job as a psychiatric nurse. Several months ago, I
> voluntarily decreased my hours from 40 to 30. I thought I
> could maintain at that level for a while, since I worked in
> the out-patent part of the hospital, with regular hours,
> M-F, more stable patients,and lots of computer/desk duties,
> with frequent opportunities to rest.
> Yesterday I was informed that my job would be eliminated in
> two weeks. I was given the option of working the in-patient
> units. Which, of course, they realize I cannot do. Rotating
> shifts, week-ends & holidays, extremely ill patients,
> frequent codes, and incessant stress. Not something a 55
> year old PWP can handle.
> I know they can't discriminate against me because of my
> disability, but can they simply eliminate me? What should I
> do next? I thought I had time to mull over my options.
> Unfortunately, since the hospital ambushed me, the time is
> NOW.
> Carole Hercun
>
> __________________________________________________
> Do You Yahoo!?
> Send your FREE holiday greetings online!
> http://greetings.yahoo.com
>
> ----------------------------------------------------------------------
> To sign-off Parkinsn send a message to:
mailto:[log in to unmask]
> In the body of the message put: signoff parkinsn
>
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Date: Fri, 4 Jan 2002 07:48:46 -0700
Reply-To: Parkinson's Information Exchange Network
<[log in to unmask]>
Sender: Parkinson's Information Exchange Network
<[log in to unmask]>
From: Schaaf Angus / Meadow Creek Ranch <[log in to unmask]>
Subject: Re: S.O.S. / Job Elimination
Dear Carole,
As long as this is NOT a military hospital they must provide you reasonable
accommodations according to ADA for persons with disabilities.
The government isnt bound by ADA regulations and can do what it wants
basically. If you havent come out of the closet so to speak with your
disability then you better do it now so you can get this accommodation in
order to continue to work.Make sure you have a doctor back you up on this
disability or have them medically retire you and take up volunteer work with
a paycheck from retirement. This is probably the easiest route. Does the
hospital have an EEO office.? That is the first stop. Next stop is to
interview an attorney that takes care of labor issues.Usually first consults
are free so call around first , gather your paperwork, and then go. If they
fire you without even trying to make an accommodation for your disability
without offerring you retirement then you should have good grounds to win a
lawsuit, but they dont come cheap. They are loaded with lots of stress and
that is something PWP's dont really need either. It is against the law to
offer a disabled person a job they can not perform so they must make an
accommodation. Again that doesnt apply to uncle sam.
THE BIGGEST THING IS if YOU DO NOT STAND UP FOR YOUR RIGHTS THE EMPLOYER
WILL TAKE THEM AND SMILE. So do it. You are protected by the ADA and equal
rights job discrimination laws. They cant even harrass you about it or if
your fellow employees or your supervisor even make derogatory comments about
your disability You can have them fired by the next up in command for not
maintaining a proper work enviroment according to ADA.Take notes from this
moment on about conversations,comments, actions, just everything pertaining.
You will need written "proof" with dates and times if you go after
them.Paper trails are a must with this stuff.
Remember ADA federal laws take precedent over all state and local laws
irregardless what your supervisor may or may not realize about it. His boss
probably does. Relax .You have protection from the law. Good Luck . Rob
----- Original Message -----
From: "Carole Hercun" <[log in to unmask]>
To: <[log in to unmask]>
Sent: Friday, January 04, 2002 6:17 AM
Subject: S.O.S. / Job Elimination
> Dear Friends:
> The members of PIEN are some off the smartest, most
> well-informed people I know. You are a virtual encyclopedia
> of resources. So I have come to you with for help with an
> urgent problem.
> I have long debated how long I could continue my job as a
> job as a psychiatric nurse. Several months ago, I
> voluntarily decreased my hours from 40 to 30. I thought I
> could maintain at that level for a while, since I worked in
> the out-patent part of the hospital, with regular hours,
> M-F, more stable patients,and lots of computer/desk duties,
> with frequent opportunities to rest.
> Yesterday I was informed that my job would be eliminated in
> two weeks. I was given the option of working the in-patient
> units. Which, of course, they realize I cannot do. Rotating
> shifts, week-ends & holidays, extremely ill patients,
> frequent codes, and incessant stress. Not something a 55
> year old PWP can handle.
> I know they can't discriminate against me because of my
> disability, but can they simply eliminate me? What should I
> do next? I thought I had time to mull over my options.
> Unfortunately, since the hospital ambushed me, the time is
> NOW.
> Carole Hercun
>
> __________________________________________________
> Do You Yahoo!?
> Send your FREE holiday greetings online!
> http://greetings.yahoo.com
>
> ----------------------------------------------------------------------
> To sign-off Parkinsn send a message to:
mailto:[log in to unmask]
> In the body of the message put: signoff parkinsn
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Date: Fri, 4 Jan 2002 07:02:18 -0800
Reply-To: supermario <[log in to unmask]>
Sender: Parkinson's Information Exchange Network
<[log in to unmask]>
From: supermario <[log in to unmask]>
Subject: Re: S.O.S. / Job Elimination
MIME-Version: 1.0
Content-Type: text/plain; charset="iso-8859-1"
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Hi Carole,
I recently was faced with a similar decision. I am also 55. My company was
having layoffs,
and I knew my job was going to be eliminated.
I agonized with the prospect of being laid off and having to look for a job
or
go on disability and buy some time.
I took the disability approach, and, at present am in Long Term Disability.
If you have that option, and can afford it, do not hesitate to take it. That
will allow you to make rational decisions, without pressure, while you try
to get a handle on your condition.
I hated the prospect of filling out another job form - I could not read my
own handwriting -.
I have not regretted my decision.
If you need additional info, please contact me.
Sincerely,
Mario
----- Original Message -----
From: "Carole Hercun" <[log in to unmask]>
To: <[log in to unmask]>
Sent: Friday, January 04, 2002 5:17 AM
Subject: S.O.S. / Job Elimination
> Dear Friends:
> The members of PIEN are some off the smartest, most
> well-informed people I know. You are a virtual encyclopedia
> of resources. So I have come to you with for help with an
> urgent problem.
> I have long debated how long I could continue my job as a
> job as a psychiatric nurse. Several months ago, I
> voluntarily decreased my hours from 40 to 30. I thought I
> could maintain at that level for a while, since I worked in
> the out-patent part of the hospital, with regular hours,
> M-F, more stable patients,and lots of computer/desk duties,
> with frequent opportunities to rest.
> Yesterday I was informed that my job would be eliminated in
> two weeks. I was given the option of working the in-patient
> units. Which, of course, they realize I cannot do. Rotating
> shifts, week-ends & holidays, extremely ill patients,
> frequent codes, and incessant stress. Not something a 55
> year old PWP can handle.
> I know they can't discriminate against me because of my
> disability, but can they simply eliminate me? What should I
> do next? I thought I had time to mull over my options.
> Unfortunately, since the hospital ambushed me, the time is
> NOW.
> Carole Hercun
>
> __________________________________________________
> Do You Yahoo!?
> Send your FREE holiday greetings online!
> http://greetings.yahoo.com
>
> ----------------------------------------------------------------------
> To sign-off Parkinsn send a message to:
mailto:[log in to unmask]
> In the body of the message put: signoff parkinsn
----------------------------------------------------------------------
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Date: Fri, 4 Jan 2002 07:25:12 -0800
Reply-To: "Carole K. Menser" <[log in to unmask]>
Sender: Parkinson's Information Exchange Network
<[log in to unmask]>
From: "Carole K. Menser" <[log in to unmask]>
Subject: Re: S.O.S. / Job Elimination
MIME-Version: 1.0
Content-Type: text/plain; charset="iso-8859-1"
Content-Transfer-Encoding: 7bit
Carole --
Did they tell you exactly why they are eliminating your job? Only you know
your level of strength and stamina to fight this. Fight it if you can not
only for yourself but because it will help others in the long run. If you
can't, that is very understandable. Remember, you MUST do what is best for
you and your health in the long run.
Peace,
the other Carole
spouse of Ted (most of you know our current situation)
-----Original Message-----
From: Carole Hercun <[log in to unmask]>
To: [log in to unmask] <[log in to unmask]>
Date: Friday, January 04, 2002 5:18 AM
Subject: S.O.S. / Job Elimination
>Dear Friends:
>The members of PIEN are some off the smartest, most
>well-informed people I know. You are a virtual encyclopedia
>of resources. So I have come to you with for help with an
>urgent problem.
>I have long debated how long I could continue my job as a
>job as a psychiatric nurse. Several months ago, I
>voluntarily decreased my hours from 40 to 30. I thought I
>could maintain at that level for a while, since I worked in
>the out-patent part of the hospital, with regular hours,
>M-F, more stable patients,and lots of computer/desk duties,
>with frequent opportunities to rest.
>Yesterday I was informed that my job would be eliminated in
>two weeks. I was given the option of working the in-patient
>units. Which, of course, they realize I cannot do. Rotating
>shifts, week-ends & holidays, extremely ill patients,
>frequent codes, and incessant stress. Not something a 55
>year old PWP can handle.
>I know they can't discriminate against me because of my
>disability, but can they simply eliminate me? What should I
>do next? I thought I had time to mull over my options.
>Unfortunately, since the hospital ambushed me, the time is
>NOW.
>Carole Hercun
>
>__________________________________________________
>Do You Yahoo!?
>Send your FREE holiday greetings online!
>http://greetings.yahoo.com
>
>----------------------------------------------------------------------
>To sign-off Parkinsn send a message to:
mailto:[log in to unmask]
>In the body of the message put: signoff parkinsn
>
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Date: Fri, 4 Jan 2002 10:06:40 -0800
Reply-To: Parkinson's Information Exchange Network
<[log in to unmask]>
Sender: Parkinson's Information Exchange Network
<[log in to unmask]>
From: Juanita Hibbert <[log in to unmask]>
Subject: Re: S.O.S. / Job Elimination
In-Reply-To: Carole Hercun <[log in to unmask]>'s message of Fri, 4 Jan 2002
05:17:56 -0800
Content-Type: Text/Plain; Charset=US-ASCII
Content-Transfer-Encoding: 7Bit
MIME-Version: 1.0 (WebTV)
Carole I have no suggestions to sove your problem. I can thoug send you
a big hug
and loads of prayers. Good luck my dear.
Juanita CG for George 75/71/64
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Date: Fri, 4 Jan 2002 12:41:52 -0500
Reply-To: Parkinson's Information Exchange Network
<[log in to unmask]>
Sender: Parkinson's Information Exchange Network
<[log in to unmask]>
From: Phil Tompkins <[log in to unmask]>
Subject: Re: S.O.S. / Job Elimination
In-Reply-To: <[log in to unmask]>
MIME-Version: 1.0
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Dear Carol,
What a thing to throw at you so quickly.
Here's what I think.
Since nurses are scarce and they are offering you other positions, I
would assume that they are cutting your position, not you. However,
if they later fill your position or create an equivalent position and
fill it, that's evidence of discrimination.
You need to decide whether to try to continue to work or else go on
disability.
If you want to continue to work, negotiate for conditions you are
able to meet. If, however, the hospital is unable to make
"reasonable accommodations" as per ADA, you will have to find work
elswhere or apply for disability. Is the nursing shortage so severe
that you could find another job that you can do? Such a job should
come with a group benefits package that includes long term
disability. If you are now covered by long term disability, then you
may consider that route now.
Find out about disability from your HR department. Before going on
long term disability there is probably something called short-term
disability, which means you use up all your sick and vacation days,
or some such. All the documentation you need for short-term
disability may be just a note from a doctor saying you can't work.
This will give you time to gear up for the long-term disability
application, which is a bit more involved, and about which I will try
to write something later.
Good luck,
Phil Tompkins
----------------------------------------------------------------------
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Date: Fri, 4 Jan 2002 11:47:02 -0800
Reply-To: [log in to unmask]
Sender: Parkinson's Information Exchange Network
<[log in to unmask]>
From: Joan Hartman <[log in to unmask]>
Subject: Re: S.O.S. / Job Elimination
MIME-Version: 1.0
Content-Type: text/plain; charset=US-ASCII
Carole you wrote...."Several months ago, I
voluntarily decreased my hours from 40 to 30. I thought I could maintain at that level for a while, since I worked
in the out-patent part of the hospital, with regular
hours, M-F, more stable patients,and lots of computer/desk
duties,
with frequent opportunities to rest..."
so that tells me you see the need to take care of
YOURSELF....
Your question to yourself should be:
"Will my PD get worse with all the stress and very little rest if I take
the new position?????" In 1998 we had some drastic high stress
changes at my job for a few months and my neuro appt happened to be in the
middle of the changes...although I felt I was doing fine she told me she didn't
like the way I was beginning to walk because of my "new found stress" and was
very insistent that I was through working THAT DAY as it was taking a toll on
me...and ..because you just can't undo damage to your body/brain/etc.....and I
cried and cried....I was not mentally ready to accept being in another
category....still not accepting the damned PD (diagnosed '97), on disability,
retirement, being home all day after 29 years with the same company, etc.... it
took me several months to adjust and she was right...you don't need the
stress...Life and pd is hard enough without adding daily/hourly stress
stituations....
I'm so glad the neuro made me do it....you're getting very
valuable direction re how to apply from people on the list .... you might also
want to check out Greg Stirling's site www.angelfire.com/pe2/firingpin/ssdi.html
....he's got tons of really good info on there.......Greg used to post on the
list ....Greg are you still with us.... Good luck, Carole....
Joan Hartman
--- Joan Hartman
--- [log in to unmask]
--- EarthLink: It's your Internet.
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Date: Fri, 4 Jan 2002 15:34:24 -0800
Reply-To: Parkinson's Information Exchange Network
<[log in to unmask]>
Sender: Parkinson's Information Exchange Network
<[log in to unmask]>
From: David Moreland <[log in to unmask]>
Subject: Re: S.O.S. / Job Elimination
In-Reply-To: <[log in to unmask]>
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
At 05:17 AM 1/4/02 -0800, you wrote:
I just recently retired on disability. I had worked as an industrial and
utility appraiser for the Oregon Department of Revenue. I worked at that
for about 21 years. During that I had one supervisor who tried to pressure
me to quit. But she was aware of ADA so she backed off. But then this last
year my superviser, for whom I have a great deal of respect, showed me some
work that i had done which was not up to the standards that i always tried
to maintain. So I concluded that I could no loner perform at the level that
I and my supervisor expected. So I made the decision that i would retire
with disability.I managed to get my PERS retirement and the federal
diabiltiy when taken tigether the two of them equals what i was getting
paid at the department. I think that it comes down to what level of
performance are you going to accept for ypurself.
Just my 2 cents worth
Yours and His
David L. MORELAND
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Date: Fri, 4 Jan 2002 20:43:55 -0400
Reply-To: Pam Bower <[log in to unmask]>
Sender: Parkinson's Information Exchange Network
<[log in to unmask]>
From: Pam Bower <[log in to unmask]>
Subject: Re: For those who receive Canadian radio
Comments: To: [log in to unmask]
MIME-Version: 1.0
Content-Type: text/plain; charset="iso-8859-1"
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You may listen to this radio program over the internet. Go to:
http://radio.cbc.ca/programs/thismorning/listen.html
Regards,
Pam
Nova Scotia, Canada
----- Original Message -----
From: <[log in to unmask]>
Sent: Thursday, January 03, 2002 6:58 PM
Subject: For those who receive Canadian radio
> Hi All -
>
> Last September an interviewer from Canada's Radio One network was here in
my
> Rhode Island home. We discussed the pig-cell implant procedure
> (xenotransplantation) that was performed on me in 1996. The operation was
> designed to test the safety aspects of this surgical approach to
Parkinson's
> Disease.
>
> The interview has been scheduled for broadcast on Sunday, January 6,
sometime
> between 9 - 11 AM. Tune into "This Morning's" weekend program "Sunday
> Edition."
>
> For more information go to this URL:
>
> <A HREF="http://www.geocities.com/jimcfinn/index.html">
> http://www.geocities.com/jimcfinn/index.html</A>
>
> Jim Finn
>
----------------------------------------------------------------------
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Date: Fri, 4 Jan 2002 20:52:30 -0700
Reply-To: Parkinson's Information Exchange Network
<[log in to unmask]>
Sender: Parkinson's Information Exchange Network
<[log in to unmask]>
From: "E.J.Bryan" <[log in to unmask]>
Subject: Re: S.O.S. / Job Elimination/ Carole Hercun
In-Reply-To: <[log in to unmask]>
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"; format=flowed
Carol--I worked as a clinical supervisor for the largest mental health
provider in Southern Arizona which capped a 35 year career in public mental
health. I had a loyal and large support system of clients, peers and
supervisors who over a year confirmed what I already knew, that I no longer
could work a 50+ week, supervise three clinical areas, and keep up with the
amounts of writing and driving that was required.
For many years I shared my PD with a select circle of patients, peers and
other professionals. The last three years, my condition had deteriorated
due to dyskensia, requiring frequent pill taking and finally DBS surgery.
My speech was becoming harder to hear and understand, walking was becoming
more and more difficult. Still I did my job, writing on the computer long
into the night, etc.
Thankfully, my opportunity and decision to leave came when I still was near
the top of my game. I take some comfort that it took 2 Phd's, and three
RN clinical supervisors to provide the same amount of supervision, advocacy
and grant writing that I had provided for the agency for many years. Still
the decision to leave was allowed to be mine.
I initially took three months of medical leave, and watched how my
movements changed and how tired I felt. My wife and I reached the decision
that it was time to retire while I still had the support of my peers,
patients and friends. I formally 'retired' in November of 2000, and began
receiving long term disability, and SSDI.
I loved working and the work I did. Now my needs for a job well done are
met by providing day care for my 10 month old grandson. I don't consider
my degrees and certifications wasted, just being used in a more practical way.
I have days when I want to go back to the high stress job I used to have,
but we can live comfortably on what we earn, and are spending time, the one
thing none of us have as much of as we think we have, together.
I think it is better to leave on your own terms, rather than theirs.
EJB
"Think for yourselves and let others enjoy the privilege to do so, too."
----------------------------------------------------------------------
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Date: Sat, 5 Jan 2002 00:35:58 EST
Reply-To: Parkinson's Information Exchange Network
<[log in to unmask]>
Sender: Parkinson's Information Exchange Network
<[log in to unmask]>
From: Rayilyn Brown <[log in to unmask]>
Subject: Re: S.O.S. / Job Elimination
MIME-Version: 1.0
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Hi, Dave and good for you on getting decent financial compensation. My
federal disability (which I earned) was reduced 60% due to CA State Teachers
pension..."Double Dipper" what a laugh. Rayilyn
----------------------------------------------------------------------
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Date: Fri, 4 Jan 2002 22:47:21 -0800
Reply-To: Parkinson's Information Exchange Network
<[log in to unmask]>
Sender: Parkinson's Information Exchange Network
<[log in to unmask]>
From: Murray Charters <[log in to unmask]>
Subject: News & Views From The Overnight Newswire - Jan 4th. 2002
MIME-Version: 1.0
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Good Morning All,
Here's the overnight "News & Views".... from the on-line media....
Cloning is THE NEWS today....
A "PWP" Person With Parkinsons (Who is also a Person
With Pigcells); our very own Jim Finn; is going to be on
the CBC Canadian Radio One's "This Morning"
the Sunday Edition! (on Sunday morning)
The segment is part of a series "On Being Human"
(on every day next week too) and, I am informed,
one should be able to listen to the show live
on streaming audio via the web, as well as later
from archived real audio files (Thankew jp)...
the website is www.cbc.ca
go to "radio"
go to the program page
Pam says you will listen via the Internet here...
http://radio.cbc.ca/programs/thismorning/listen.html
'Course I'll just crank up m'Stromberg-Carlson...
Cheers ........ murray
ARTICLE: Dolly the Cloned Sheep Has Arthritis, Scientists Say
http://www.foxnews.com/story/0,2933,42169,00.html
ARTICLE: Cloned Pigs With Magic Gene Produced by British Company
http://english.peopledaily.com.cn/200201/04/eng20020104_88011.shtml
ARTICLE: PPL were not the first to bring home the bacon
http://www.theherald.co.uk/news/archive/4-1-19102-23-51-32.html
ARTICLE: Pig cloning raises hope on organs for humans
http://inq.philly.com/content/inquirer/2002/01/04/national/CLONE04.htm
ARTICLE: Classroom is microcosm for cloning debate
http://www.knoxnews.com/kns/sci_and_tech/article/0,1406,KNS_328_927541,00.html
* * *
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Date: Fri, 4 Jan 2002 23:49:01 -0800
Reply-To: Parkinson's Information Exchange Network
<[log in to unmask]>
Sender: Parkinson's Information Exchange Network
<[log in to unmask]>
From: Murray Charters <[log in to unmask]>
Subject: Read Jim Finn's Pig-Cell Implant Diary
MIME-Version: 1.0
Content-type: text/plain; charset=US-ASCII
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Hi All,
In light of the current headlines re: pig cloning and it's potential
I encourage y'all to Read Jim Finn's Pig-Cell Implant Diary!
Jim Finn's Home Page - Welcome!
(Read Jim Finn's Pig-Cell Implant Diary)
http://www.geocities.com/jimcfinn/
Then listen to Jim on the CBC on Sunday...
Jim Finn is going to be on
the CBC Canadian Radio One's "This Morning"
the Sunday Edition! (on Sunday morning)
The segment is part of a series "On Being Human"
(on every day next week too) and, I am informed,
one should be able to listen to the show live
on streaming audio via the web, as well as later
from archived real audio files (Thankew jp)...
the website is http://www.cbc.ca
go to "radio"
go to the program page
Pam says you will listen via the Internet here...
http://radio.cbc.ca/programs/thismorning/listen.html
REFERENCE:
PARKINSON REPORT
VOLUME XXI - ISSUE 1/ Winter 2000
Research Continues for NeuroCellTM-PD Porcine Fetal Neural Cell
For Transplantation for Parkinson's Disease
http://www.parkinson.org/texthtms/tneurocell.htm
Diacrin, Inc. NeuroCell-PD for Parkinson's Disease
http://www.diacrin.com/prod01.htm
"Genzyme and Diacrin Report Preliminary Results
From Phase 2 Trial of NeuroCell-PD"
http://www.diacrin.com/PD%20phase%202%20results.htm
Diacrin, Inc. NeuroCell-PD for Parkinson's Disease
http://yahoo.marketguide.com/MGI/busidesc.asp?target=/stocks/companyinformation/busidesc&Ticker=DCRN
* * *
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Date: Sat, 5 Jan 2002 11:12:32 +0000
Reply-To: Parkinson's Information Exchange Network
<[log in to unmask]>
Sender: Parkinson's Information Exchange Network
<[log in to unmask]>
From: barbara <[log in to unmask]>
Subject: leg/foot cramps
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Hello Eveyone,
Has anyone taken MSM or used B12 injections for cramps?
Please write to me directly, I am not receiving listserv digest.
Thank you,
Barbara
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Date: Sat, 5 Jan 2002 05:32:30 -0800
Reply-To: Parkinson's Information Exchange Network
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From: Clay Felts <[log in to unmask]>
Subject: Last Dancer Verse
Comments: To: [log in to unmask]
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