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Date: Tue, 20 Aug 2002 23:07:35 +0200
Reply-To: Parkinson's Information Exchange Network
<[log in to unmask]>
Sender: Parkinson's Information Exchange Network
<[log in to unmask]>
From: Hans van der Genugten <[log in to unmask]>
Subject: Fw: Deborah Setzer
Comments: To: Sparkle <[log in to unmask]>
Comments: cc: Joan Hartman <[log in to unmask]>
MIME-Version: 1.0
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Hi everyone...this message maybe a duplicate and some of it is old news of
what you received yesterday., e.g. Deborah has been moved to another
hospital..another email will come when we have verification of the time of
surgery....
The reason for resending this is that I received a warning message stating
that some of my email did not go through....so I'm reposting messages with
the help of Hans.......Joan Hartman
----- Original Message >
Sent: Monday, August 19, 2002 8:51 AM
Subject: Deborah Setzer
Hello...There's several of us that have been in contact in various ways
with either Deborah and/or Robert (the latest being Edith on Sunday) .....
I've been designated the one to forward the information to you for all of
us for the next few weeks....some of what I wrote last night is now a
duplicate because you've heard from The Lady of the Hour herself this
morning..and don't you just love the way she signs off ...... Hugs and
Warm Fuzzies, Deborah aka Tenacity, But for the Grace of God, Go I!
But please bear with me as there's more you might like to know.
Today, Monday, we know is that they meet with all the doctors and
other medical staff and Deborah begins a set of 32 tests that must be
taken before surgery which, at this point in time is scheduled for is
Wednesday at 10:30 am EST. (I will confirm the time and send a
reminder on Tuesday night).
Usually, Deborah has had time to research her tests and to understand
enough of what was going to happen to her so a lot of the fear was
removed..... This time, everything has moved so quickly, there was no
time for research which makes it all the more unnerving for her. She
no longer has any veins showing and the pain that results is unbearable.
And, now, there is the additional factor of Ovarian Cancer that has to be
dealt with. And, yet, none of these 32 tests mentioned above include
tests for the ovarian cancer which will also be done.
Deborah and Robert just "found out" about the Ovarian Cancer this past
Friday when Robert went and picked up Deborah's records from their local
doctor to take them to NY and she read her own files....it showed earlier
notations regarding Chiari and also for Ovarian Cancer which is in her
family....the doctors failed to retest or to notify her or to follow up on
these two things...and nobody caught it.....and now she's paying the price.
Even though it's Deborah who has been through test after test, poked and
prodded by doctor after doctor, until there's nothing left to poke,
diagnosed and mis-diagnosed, given the good news only to hear, "no,
sorry, we made a mistake, it's bad news" over and over again, Robert's
been there with her.....and we all know it's just as bad for the spouse
watching the loved one go through this.....they are a team and they suffer
together as one.... therefore, we all need to provide all the support they
both need....the support that we, ourselves, would like if we were in their
shoes...... and in any way we can.......If you would like to, you can do any
one or all of the following to show your support for them...........you can
write them a word of encouragement through this PD venue we have,
..............you can go get a get well card and while you're writing the
card out, think about enclosing a check in the card that you send or you
can make a donation to Tom Berdine's YOP site as he has a special
fund set up for Deborah...or come up with a supportive idea yourself....
just as long as we are all there to support them. Contact information is
listed below in case you want to do any of these things.
They have spent all their savings, have tremedous medical bills and
money would be very helpful. When they were in NY last time for the
consultation, it was $24/hour to hook up online to let us PDers and the
folks back home know Deborah's status. Kathleen is currently checking
out cheaper ways to do this.
I am putting my email address down so in case you would like to contact me
directly. We will keep you posted as we get information as to what's
happening...
Joan Hartman [log in to unmask]
Robert Setzer
[log in to unmask]
Deborah Setzer
[log in to unmask]
Tom Berdine YOP site with special fund for Deborah
www.youngparkinsons.com/
Deborah has been moved to another HOSPITAL ....IT IS
North Shore University Hospital, Room 474
300 Community Drive
Manhasset, NY 11030
516-684-5812
This was the original hospital
Long Island Jewish Medical Center
270-05 76th Avenue
New Hyde Park, NY 11040
718-470-7000
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Date: Tue, 20 Aug 2002 16:42:40 -0500
Reply-To: Parkinson's Information Exchange Network
<[log in to unmask]>
Sender: Parkinson's Information Exchange Network
<[log in to unmask]>
From: Katie Mauch <[log in to unmask]>
Subject: Re: ASKIING FOR ADVICE
MIME-Version: 1.0
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Dear Don,
I don't think it has anything to do with old age. I'm 46 years old,
diagnosed in January, and I cannot cross my legs at all. --Katie from El
Campo
----- Original Message -----
From: "Donald F. McKinley" <[log in to unmask]>
To: <[log in to unmask]>
Sent: Tuesday, August 20, 2002 3:59 PM
Subject: ASKIING FOR ADVICE
> WHEN SETTING IN A RECLINER CHAIR U CROSS U R LEGS CAN U UNCROSS THEM WHIT
OUT HELP. VIVIAN GOT TO LIFT THE 1 ON TOP DOWN AS I CAN;T IS THEAR OTHERS?
TRY NOT TO DO IT BUT FORGET. OLD AGE I GUESS LO LO
>
> I.Y.Q. DON & VIVIAN =LOVE+PD
>
>
>
>
> http://www.geocities.com/doncyberdadmckinley/
>
> ----------------------------------------------------------------------
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Date: Tue, 20 Aug 2002 19:12:16 -0400
Reply-To: Parkinson's Information Exchange Network
<[log in to unmask]>
Sender: Parkinson's Information Exchange Network
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From: Linda J Herman <[log in to unmask]>
Subject: GrassrootsConnection
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The GrassRootsConnection has been recently redesigned and expanded. GRC
is an independent advocacy web site for and by People With Parkinson's.
It was created by two PWPs - Paula Wittekindt and Peggy Willocks, with a
little help from their friends.
Read about current health and political issues affecting Parkinson's
patients around the world, take suggested actions, and get involved. Let
your voice be heard!
Comments and suggestions for future topics are welcomed, and so are your
writings about issues that are important to you.
SEE:
www.grassrootsconnection.com
""Great things are done by a series of smaller things brought together."
(Vincent van Gogh)
Thanks,
Linda Herman
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Date: Tue, 20 Aug 2002 20:03:30 -0400
Reply-To: Parkinson's Information Exchange Network
<[log in to unmask]>
Sender: Parkinson's Information Exchange Network
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From: Bob Allison <[log in to unmask]>
Subject: Re: med research
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Raj Thanks, i will give it a try.
----- Original Message -----
From: "Brightline" <[log in to unmask]>
To: <[log in to unmask]>
Sent: Saturday, August 17, 2002 8:17 PM
Subject: Re: med research
> Hi! Bob:
> Also try this site: www.findarticles.com
> Raj
> [log in to unmask]
> ************
> ----- Original Message -----
> From: "Bob Allison" <[log in to unmask]>
> To: <[log in to unmask]>
> Sent: Saturday, August 17, 2002 3:32 PM
> Subject: med research
>
>
> > Hi yall
> >
> > What are the best sites to do lit searches on medical topics especially
re
> > neurology? Raj gave me Pubmed but it seems to be limited as far as
> > neurology journals unless I am missing something(which wouldnt be new to
> > this focus-challenged PDer.
> >
> > Also, i thought i read once where somebody was doing a clipping service
> for
> > med journal articles on PD. Anybody know of this?
> >
> > Thanks, Bob
> >
> > ----------------------------------------------------------------------
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Date: Tue, 20 Aug 2002 20:03:17 EDT
Reply-To: Parkinson's Information Exchange Network
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Sender: Parkinson's Information Exchange Network
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From: Rayilyn Brown <[log in to unmask]>
Subject: Fwd: PET SCAN Scandal
MIME-Version: 1.0
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also sent to Time, Newsweek, USNews and World Report. can anyone else help?
Rayilyn
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<HTML><FONT FACE=arial,helvetica><FONT SIZE=2>also sent to Time, Newsweek, USNews and World Report. can anyone else help? Rayilyn</FONT></HTML>
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Return-path: <[log in to unmask]>
From: [log in to unmask]
Full-name: RayilynLee
Message-ID: <[log in to unmask]>
Date: Tue, 20 Aug 2002 19:58:57 EDT
Subject: Fwd: PET SCAN Scandal
To: [log in to unmask]
MIME-Version: 1.0
Content-Type: multipart/mixed; boundary="part2_28.2b6ecb00.2a9431c1_boundary"
X-Mailer: AOL 6.0 for Windows US sub 10572
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Joan, this went to National Enquirer, People magazine, and The New York Times
(I guessed at their email cause I couldn't get in on that site you gave me.
Anyone else you want me to send it to? Rayilyn
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<HTML><FONT FACE=arial,helvetica><FONT SIZE=2>Joan, this went to National Enquirer, People magazine, and The New York Times (I guessed at their email cause I couldn't get in on that site you gave me. Anyone else you want me to send it to? Rayilyn</FONT></HTML>
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Return-path: <[log in to unmask]>
From: [log in to unmask]
Full-name: RayilynLee
Message-ID: <[log in to unmask]>
Date: Tue, 20 Aug 2002 19:55:44 EDT
Subject: PET SCAN Scandal
To: [log in to unmask]
MIME-Version: 1.0
Content-Type: multipart/alternative; boundary="part3_28.2b6ecb00.2a943100_boundary"
X-Mailer: AOL 6.0 for Windows US sub 10572
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Dear Editor:
Right now a life and death drama is going on for 40 yr old Deborah Setzer in=
=20
Room 474 of North Shore University Hospital, Manhasset, NY. 1-516-684-5812 i=
s=20
her phone number there.
This month she had a F-DOPA PET scan which showed she does not have=20
Parkinsons. =A0She had a FDG-DOPA (glucose) scan which showed she doesn't ha=
ve=20
MSA (multiple systems atrophy). =A0We Parkies have been told by the medical=20
profession that there is no test for Parkinson's that show how much dopamine=
=20
our brains have.
She will have surgery tomorrow for Chiari, something none of us Parkies had=20
ever heard of. =A0=A0
Because these scans were not done, Deborah had unnecessary DBS brain surgery=
=20
for PD in Feb 2002 - developed a staph infectiion, was allergic to meds, had=
=20
last rites of church, but somehow survived.
While going through her medical records take with her to NY from SC for the=20
Chiari surgery she discovered an April 2002 CA-125 reading for ovarian cance=
r=20
of 48. =A0Normal is 1-35.
Will Deborah survive tomorrow's surgery? =A0Will she be helped? =A0Does she=20=
have=20
ovarian cancer?
Her friends on the Parkinson's List have tried unsuccessfully to raise money=
=20
to help meet her mounting expenses.
Please help us publicize her struggle and the news there has beenn a PET sca=
n=20
for PD for 15 yrs. =A0I'm having mine Sept 9 at UCLA. =A0Corrrect diagnosis=20=
is=20
essential for treatment, and we Parkies have not had that luxury. =A0Treatme=
nt=20
is a crapshoot, because like cancer, Parkinson's is not one disease, but man=
y.
[log in to unmask],=20
Rayilyn Lee Brown, PD prisoner and ovarian cancer survivor.
1-909-696-0908
40697 Corte Albara
Murrieta, CA =A092562-5513
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<HTML><FONT FACE=3Darial,helvetica><FONT SIZE=3D2>Dear Editor:
<BR>
<BR>Right now a life and death drama is going on for 40 yr old Deborah Setze=
r in Room 474 of North Shore University Hospital, Manhasset, NY. 1-516-684-5=
812 is her phone number there.
<BR>
<BR>This month she had a F-DOPA PET scan which showed she does not have Park=
insons. =A0She had a FDG-DOPA (glucose) scan which showed she doesn't have M=
SA (multiple systems atrophy). =A0We Parkies have been told by the medical p=
rofession that there is no test for Parkinson's that show how much dopamine=20=
our brains have.
<BR>
<BR>She will have surgery tomorrow for Chiari, something none of us Parkies=20=
had ever heard of. =A0=A0
<BR>
<BR>Because these scans were not done, Deborah had unnecessary DBS brain sur=
gery for PD in Feb 2002 - developed a staph infectiion, was allergic to meds=
, had last rites of church, but somehow survived.
<BR>
<BR>While going through her medical records take with her to NY from SC for=20=
the Chiari surgery she discovered an April 2002 CA-125 reading for ovarian c=
ancer of 48. =A0Normal is 1-35.
<BR>
<BR>Will Deborah survive tomorrow's surgery? =A0Will she be helped? =A0Does=20=
she have ovarian cancer?
<BR>
<BR>Her friends on the Parkinson's List have tried unsuccessfully to raise m=
oney to help meet her mounting expenses.
<BR>
<BR>Please help us publicize her struggle and the news there has beenn a PET=
scan for PD for 15 yrs. =A0I'm having mine Sept 9 at UCLA. =A0Corrrect diag=
nosis is essential for treatment, and we Parkies have not had that luxury.=20=
=A0Treatment is a crapshoot, because like cancer, Parkinson's is not one dis=
ease, but many.
<BR>
<BR>[log in to unmask],=20
<BR>Rayilyn Lee Brown, PD prisoner and ovarian cancer survivor.
<BR>1-909-696-0908
<BR>40697 Corte Albara
<BR>Murrieta, CA =A092562-5513</FONT></HTML>
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=========================================================================
Date: Tue, 20 Aug 2002 20:14:01 EDT
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: A few more brain cells die today
MIME-Version: 1.0
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Clay, we need to get this published. Great title. Rayilyn
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Date: Tue, 20 Aug 2002 21:44:07 -0300
Reply-To: Parkinson's Information Exchange Network
<[log in to unmask]>
Sender: Parkinson's Information Exchange Network
<[log in to unmask]>
From: Lisa Crumrine <[log in to unmask]>
Subject: Re: A few more brain cells die today
MIME-Version: 1.0
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wow!
----- Original Message -----=20
From: Clay Felts=20
To: [log in to unmask]
Sent: Tuesday, August 20, 2002 5:41 PM
Subject: A few more brain cells die today
A Few More Brain Cells Die Today
A few more brain cells die.
Dawn vaporizes night visitors.
Pills rejuvenate my stomach's medical concoction=20
My trainer encourages me to rip muscles.
A few more brain cells die.
Lunch is counted using every known diet plan.
My presence is extended by electronics.
A clerk's whim approves long-term disability.
A few more brain cells die.
A search for the green flash gives passage to night.
E-mails mask loneliness.
Glowing phosphors images say good night.
A few more brain cells die.
Clay Felts 8/02
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Date: Tue, 20 Aug 2002 21:32:34 -0400
Reply-To: Parkinson's Information Exchange Network
<[log in to unmask]>
Sender: Parkinson's Information Exchange Network
<[log in to unmask]>
From: ds401 <[log in to unmask]>
Subject: M.S.A. DRUG STUDY CLEVELAND CLINIC FOUNDATION
Comments: To: "[log in to unmask]" <[log in to unmask]>
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
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MULTIPLE SYSTEM ATROPHY (M.S.A.)
THERE IS A DRUG STUDY AT C.C.F. INVOLVING MSA PATIENTS.
I THOUGHT MAYBE SOME HERE MAY BE INTERESTED IN THE STUDY. THE MOVEMENT
DISORDER SPECIALIST/NEUROLOGIST LISTED ON THE INFORMATION SHEET IS -
DR. SUBRAMANIAN, M.D.
216-444-4270
SINCERELY,
NANCY MULLEN
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Date: Tue, 20 Aug 2002 22:16:31 EDT
Reply-To: Parkinson's Information Exchange Network
<[log in to unmask]>
Sender: Parkinson's Information Exchange Network
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From: Noma DePew <[log in to unmask]>
Subject: Re: PET SCAN Scandal
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In a message dated 8/20/2002 5:06:59 PM Pacific Daylight Time,
[log in to unmask] writes:
>
> also sent to Time, Newsweek, USNews and World Report. can anyone else
> help? Rayilyn
>
I have no inside information, but if you could get a reporter on CNN or
FOXNEWS interested, it would be known all over the world! Also, Oprah has a
lot of clout, and could be open to have someone talk about this on her TV
show.......
Bunny DePew
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Date: Tue, 20 Aug 2002 22:34:13 -0400
Reply-To: Parkinson's Information Exchange Network
<[log in to unmask]>
Sender: Parkinson's Information Exchange Network
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From: Neil Shook <[log in to unmask]>
Subject: Re: Permax causes festination?
MIME-Version: 1.0
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Dear Bruce,
I am 48 years old & have been taking Permax in different strengths for
12 years. At this time I take 6 or 7 - 1 mg. per day. They help my Sinemet
25/100 work better. My major problem is profuse sweating. I had DBS (both
sides) in Phila. 10/30/2000. Without it I would be in a wheelchair by now.
Best wishes for a cure- Paula from Pennsy.
----- Original Message -----
From: "Bruce & Helen McCallum" <[log in to unmask]>
To: <[log in to unmask]>
Sent: Sunday, August 18, 2002 2:32 PM
Subject: Permax causes festination?
> Does anyone else experience increased festination with taking Permax? I am
now on a prescribed dosage of
> 1/2 of a .25 mg pill 5 times a day, and am bothered by festination. Has
anyone found another agonist
> that doesn't have festination as a side effect?
>
> Many thanks, Bruce McCallum
>
> ----------------------------------------------------------------------
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Date: Tue, 20 Aug 2002 20:15:29 -0700
Reply-To: Parkinson's Information Exchange Network
<[log in to unmask]>
Sender: Parkinson's Information Exchange Network
<[log in to unmask]>
From: Julius Margolis <[log in to unmask]>
Subject: Re: Chiari and ovarian cancer
Comments: To: [log in to unmask]
In-Reply-To: <3D5E4A83.3289.7C01F5@localhost>
Mime-Version: 1.0
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Robert Fink has made very disturbing statements about the diagnosis and the
treatment that Deborah is receiving. All of us are full of indignation for
Deborah's past treatment and of admiration for her spunkiness in finding a
new solution. But if Dr Fink, one of our resident neurologists, is close to
being correct in his warning we may be encouraging still more destructive
behavior. Can some of those who are close to the case tell us that Dr.
Fink's warnings have been heeded and the current procedures are ok.
Jules Margolis, cg for Doris 79/10.
At 01:07 PM 8/17/02 -0700, Robert A. Fink, M. D. wrote:
>I do not have Deborah's e-mail address, so my response goes to the
>List.
>
>Be VERY wary of surgeons who want to operate on you for Chiari I
>malformation. There is a small group of neurosurgeons who have made
>quite a good living by performing these surgeries on people with this
>condition. Chiari I is a mild birth defect at the base of the skull,
>which, in most patients, causes NO problems at all. If problems are
>caused by Chiari malformations (usually by the types II and III),
>these problems are due to obstruction of spinal fluid circulation
>(hydrocephalus), and the symptoms are severe and life-threatening.
>Posterior fossa decompression and/or shunting is indicated for the
>treatment of this type of malformation.
>
>The above (serious) problems usually develop in childhood and rarely
>cause trouble in adults. We have found many cases of Chiari Type I
>as incidental findings when patients have cervical MRI studies for
>other conditions (cervical discs, etc.); and, in most cases, the
>findings are *incidental*. They do not need "correction".
>
>A group of neurosurgeons, however, has made a big deal about
>operating on these malformations for various complaints, including
>the symptoms that Deborah speaks of in the e-mail which was forwarded
>to me. Such other conditions as "fibromyalgia" have also been
>ascribed to Chiari Type I. There was a program on TV a couple of
>years ago which popularized the "cure" and it was so poorly-based
>scientifically that the national neurosurgical societies in the USA
>published a paper warning the public that surgery for this set of
>problems was unproven and not risk-free.
>
>Get a good evaluation from a neurosurgical center (such as Dr.
>Patrick Kelly at NYU) before you accept this stuff about Chiari Type
>I.
>
>I would definitely get active as to the issue of the ovarian cancer.
>Abdominal exploration may indeed be indicated.
>
>
>Best,
>
>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: Tue, 20 Aug 2002 20:30:51 -0700
Reply-To: Joan Hartman <[log in to unmask]>
Sender: Parkinson's Information Exchange Network
<[log in to unmask]>
From: Joan Hartman <[log in to unmask]>
Subject: Deborah's Update
Comments: To: Tom Berdine <[log in to unmask]>,
SPARKLE <[log in to unmask]>,
Public Discussions Forum <[log in to unmask]>
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THERE WILL BE NO SURGERY TOMORROW FOR DEBORAH...Robert called and.there's
a possiblity that it's not Chiari so more tests are needed in order to
confirm that Deborah does, indeed, have Chiari or determine exactly what she
does have. They are taking a "wait and see" attitude for a couple of days
until they have these new test results. Robert said, it's the first time
in a long, long time that he has seen her smile. Robert will call again
when he has more news...But, please, still keep them in your prayers and
good thoughts.........
Joan Hartman
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Date: Tue, 20 Aug 2002 23:34:04 EDT
Reply-To: Parkinson's Information Exchange Network
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From: Carol Gray <[log in to unmask]>
Subject: Re: Permax causes festination?
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Yes Bruce,
I have increased festination and I take 3 mg. of
Permax a day. I also have exteme sweating and
shortness of breath. I have had parkinson's disease
25 years and my doctors can't find a reason for
these symptoms------I think here just aren't enough doctors who have treated
enough patients with young onset PD to be able to answer my questions.
I feel sometimes they are saying "patient treat thyself". Sorry to sound off
but I am angry at
my doctors right now/angry that research hasn't
found a cure/angry at my limitations! I had to
stop driving about 6 months ago and I am not
taking my loss of independence very well!
carol gray
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Date: Wed, 21 Aug 2002 01:12:21 EDT
Reply-To: Parkinson's Information Exchange Network
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From: Rayilyn Brown <[log in to unmask]>
Subject: Re: PET SCAN Scandal/Bunny
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Bunny, how do I contact this people, of course I've thought of them. My
hands don't work and Mario is rewriting it. Help me with email addresses.
Attention is not guaranteed not matter how well something is written - you
need to be Charlton Heston or Moses. This was written hastily with the
little energy I have left. Ray
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Date: Wed, 21 Aug 2002 01:04:44 -0600
Reply-To: Parkinson's Information Exchange Network
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From: Tom Berdine <[log in to unmask]>
Subject: Deborah Setzer's Updates
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Many of you wrote me asking about Deborah Setzer, I am keeping this site
updated as to her current situation. It shows all she has gone through
thus far.
http://www.youngparkinsons.com/deborah.htm
Thomas Berdine
Executive Director
Young Onset Parkinson's Association
www.yopa.org
Founder
YoungParkinsons.com
www.youngparkinsons.com
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Date: Wed, 21 Aug 2002 08:19:38 -0700
Reply-To: [log in to unmask]
Sender: Parkinson's Information Exchange Network
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From: "Robert A. Fink, M. D." <[log in to unmask]>
Subject: Re: Deborah's Update
Comments: To: Joan Hartman <[log in to unmask]>
In-Reply-To: <052901c248c3$277e5ad0$547779a5@Lulubelle>
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Date sent: Tue, 20 Aug 2002 20:30:51 -0700
Send reply to: Joan Hartman <[log in to unmask]>
From: Joan Hartman <[log in to unmask]>
Subject: Deborah's Update
To: [log in to unmask]
> Robert called
> and.there's a possiblity that it's not Chiari so more tests are needed
> in order to confirm that Deborah does, indeed, have Chiari or
> determine exactly what she does have. They are taking a "wait and
> see" attitude for a couple of days until they have these new test
> results.
The above adds to my concerns that something is "not right". Chiari
malformation (as a diagnosis) is not something that needs to be
"confirmed". It is a purely *anatomical* finding (a part of the
brain has to be present so many millimeters below a line drawn on an
MRI image of the back of the skull) and is either present or is not.
The issue in this case is whether the Chiari malformation (the
anatomical finding) is causing any functional trouble or not. "More
tests" for the Chiari is NOT the issue.
Best,
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, 21 Aug 2002 12:26:57 -0700
Reply-To: Parkinson's Information Exchange Network
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From: "Donald F. McKinley" <[log in to unmask]>
Subject: PAXIL & GINGO
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I HAVE BEEN ON PAXIL FOR YEARS IN OUR PAPER IT SAID A JUDGE IN CA. PUT =
STOP ON ADV. PAXIL AS 35 PEOPLE SAID IT WAS A DRUG & HABIT FORMING. & =
GOV. WANTS TO PUT STOP ON GINGKO. I REMEMBER WHEN LOT ON LINE TOOL =
IT.HAS ANY 1 ELSE HURD ANY THING ON THE 2?=20
I.Y.Q. DON & VIVIAN=3DLOVE+PD
LOVE OF MY LIFE-56
BEST MED FOR PD IS
LOVE & LAUGHTER
DON MCKINLEY
2440 LAKEWOOD
LIMA,OH. 45805
RETRIED & 1/2 A---D INVENTOR
[log in to unmask]
http://www.geocities.com/doncyberdadmckinley/
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Date: Wed, 21 Aug 2002 16:11:24 -0400
Reply-To: [log in to unmask]
Sender: Parkinson's Information Exchange Network
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From: Sally Lattuca at Turn of Phrase <[log in to unmask]>
Organization: Turn of Phrase
Subject: Re: PAXIL & GINGO
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Ginkgo is supposed to be a no-no for Parkies because it can cause
hallucinations, etc.
I, too, have been on Paxil for a couple of years. It certainly is a
drug. And it certainly is habit-forming, like a lot of other drugs that
are useful and necessary for a reasonable quality of life for certain
people. But I guess I'd agree with any judge who put a stop on
advertising Paxil--and lots of other drugs. People with uncomfortable
symptoms ought to report them to their docs and let the docs suggest.
-----Original Message-----
From: Parkinson's Information Exchange Network
[mailto:[log in to unmask]] On Behalf Of Donald F. McKinley
Sent: Wednesday, August 21, 2002 3:27 PM
To: [log in to unmask]
Subject: PAXIL & GINGO
I HAVE BEEN ON PAXIL FOR YEARS IN OUR PAPER IT SAID A JUDGE IN CA. PUT
STOP ON ADV. PAXIL AS 35 PEOPLE SAID IT WAS A DRUG & HABIT FORMING. &
GOV. WANTS TO PUT STOP ON GINGKO. I REMEMBER WHEN LOT ON LINE TOOL
IT.HAS ANY 1 ELSE HURD ANY THING ON THE 2?
I.Y.Q. DON & VIVIAN=LOVE+PD
LOVE OF MY LIFE-56
BEST MED FOR PD IS
LOVE & LAUGHTER
DON MCKINLEY
2440 LAKEWOOD
LIMA,OH. 45805
RETRIED & 1/2 A---D INVENTOR
[log in to unmask]
http://www.geocities.com/doncyberdadmckinley/
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Date: Wed, 21 Aug 2002 17:15:10 -0300
Reply-To: Parkinson's Information Exchange Network
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Sender: Parkinson's Information Exchange Network
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From: Brightline <[log in to unmask]>
Subject: Re: PAXIL & GINGO
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Hi! Vivian:
I heard in the CNN news that Gingko biloba is not doing what it was
supposed to do. In essence, there was no difference in the brain alertness
activity, according to this test, between placebo and Gingko biloba when
tested upon about 340 people. Mind you these were all normal but aged
(above 60) people. I also heard some rumours about a year ago on the lak of
beneficial effects of Gingko.
Raj
[log in to unmask]
----- Original Message -----
From: "Donald F. McKinley" <[log in to unmask]>
To: <[log in to unmask]>
Sent: Wednesday, August 21, 2002 4:26 PM
Subject: PAXIL & GINGO
> I HAVE BEEN ON PAXIL FOR YEARS IN OUR PAPER IT SAID A JUDGE IN CA. PUT
STOP ON ADV. PAXIL AS 35 PEOPLE SAID IT WAS A DRUG & HABIT FORMING. & GOV.
WANTS TO PUT STOP ON GINGKO. I REMEMBER WHEN LOT ON LINE TOOL IT.HAS ANY 1
ELSE HURD ANY THING ON THE 2?
>
> I.Y.Q. DON & VIVIAN=LOVE+PD
> LOVE OF MY LIFE-56
>
> BEST MED FOR PD IS
> LOVE & LAUGHTER
>
> DON MCKINLEY
> 2440 LAKEWOOD
> LIMA,OH. 45805
> RETRIED & 1/2 A---D INVENTOR
> [log in to unmask]
>
> http://www.geocities.com/doncyberdadmckinley/
>
> ----------------------------------------------------------------------
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Date: Wed, 21 Aug 2002 15:22:39 -0500
Reply-To: Parkinson's Information Exchange Network
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Sender: Parkinson's Information Exchange Network
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From: Jann Bell <[log in to unmask]>
Subject: Re: PAXIL & GINGO
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So, should diabetics stop taking insulin because they have a habit of using
it in order to live? Should asthma sufferers figure out a way to stop their
medication because it is lets them continue one of the most ingrained habits
of all, breathing?
Excuse, I am mentally ill, an obsessive compulsive with a bad case of
circular thinking. Some form or another of it runs throughout the
strangely-wired brains of all my blood relatives. Everybody (hopefully)
finds a way to cope.
Selective Serotonin Reuptake Inhibitors, of which Paxil is one, helps people
optimize their thoughts and energy instead of using an inordinate amount
working around their malfunctioning synapses. And, since Serotonin and
Dopamine seem very related to each other, who can presently say that taking
a drug that helps get all the goodie out of what Serotonin we are able to
utilize efficiently that it doesn't have some good benefit for the Dopamine
connection (they have no long term studies on any of the SSRIs that I am
aware of).
Yes, most drugs are habit forming, if not physiologically then for the
benefits they enable. I will always take a SSRI (unless something more
targeted comes along). I work with a division of Medicaid and our beef with
the companies that advertise their designer drugs is the affect it has on
advertising targets. The ads always mention to ask you doctor about their
specific drug at the expense (literally) of a generic one that might be just
as effective (granted some aren't) It's a money thing for state run Medicaid
HMOs whose administrators have little hair left on their heads after so much
pulling for creative solutions to a shrinking budget.
Now, if Don was asking about SSRIs as specifically related to Parkinson's, I
cannot answer that. My Dad is very depressed altho' his generation would
never put a name to his despair.
If I have missed Don's point, nevermind.
CG Jann
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Date: Wed, 21 Aug 2002 17:02:16 -0700
Reply-To: Parkinson's Information Exchange Network
<[log in to unmask]>
Sender: Parkinson's Information Exchange Network
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From: "Donald F. McKinley" <[log in to unmask]>
Subject: Re: PAXIL & GINGO
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http://www.geocities.com/doncyberdadmckinley/
----- Original Message -----=20
From: "Jann Bell" <[log in to unmask]>
To: <[log in to unmask]>
Sent: Wednesday, August 21, 2002 1:22 PM
Subject: Re: PAXIL & GINGO
U MUST UNDERSTOOD ME I TAKE PAXIL A JUDGE IN CA PUT A STOP TO IT.=20
> So, should diabetics stop taking insulin because they have a habit of =
using
> it in order to live? Should asthma sufferers figure out a way to stop =
their
> medication because it is lets them continue one of the most ingrained =
habits
> of all, breathing?
>=20
> Excuse, I am mentally ill, an obsessive compulsive with a bad case of
> circular thinking. Some form or another of it runs throughout the
> strangely-wired brains of all my blood relatives. Everybody =
(hopefully)
> finds a way to cope.
> Selective Serotonin Reuptake Inhibitors, of which Paxil is one, helps =
people
> optimize their thoughts and energy instead of using an inordinate =
amount
> working around their malfunctioning synapses. And, since Serotonin and
> Dopamine seem very related to each other, who can presently say that =
taking
> a drug that helps get all the goodie out of what Serotonin we are able =
to
> utilize efficiently that it doesn't have some good benefit for the =
Dopamine
> connection (they have no long term studies on any of the SSRIs that I =
am
> aware of).
>=20
> Yes, most drugs are habit forming, if not physiologically then for the
> benefits they enable. I will always take a SSRI (unless something more
> targeted comes along). I work with a division of Medicaid and our beef =
with
> the companies that advertise their designer drugs is the affect it has =
on
> advertising targets. The ads always mention to ask you doctor about =
their
> specific drug at the expense (literally) of a generic one that might =
be just
> as effective (granted some aren't) It's a money thing for state run =
Medicaid
> HMOs whose administrators have little hair left on their heads after =
so much
> pulling for creative solutions to a shrinking budget.
>=20
> Now, if Don was asking about SSRIs as specifically related to =
Parkinson's, I
> cannot answer that. My Dad is very depressed altho' his generation =
would
> never put a name to his despair.
>=20
> If I have missed Don's point, nevermind.
>=20
>=20
>=20
> CG Jann
>=20
> ----------------------------------------------------------------------
> To sign-off Parkinsn send a message to: =
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>=20
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Date: Wed, 21 Aug 2002 16:57:27 -0700
Reply-To: Joan Hartman <[log in to unmask]>
Sender: Parkinson's Information Exchange Network
<[log in to unmask]>
From: Joan Hartman <[log in to unmask]>
Subject: Re: Chiari and ovarian cancer
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You wrote.......Can some of those who are close to the case tell us that
Dr.Fink's warnings have been heeded and the current procedures are ok.
Hi Julius....thx for your concern...it's such a terrible situation...I can't
answer your questions above but I can tell you that Deborah called another
friend while driving up to NY and said that she was aware of Bob's
comments and wished she had seen them sooner.
and when Robert called me on the phone, I did tell him to make sure that
they read each of Bob's comments in each email.......they have a laptop
with them and do
log in daily for the messages. As you know from my posting last night, the
surgery is on hold for a couple of days. He's due to call again tonight
after speaking with the doctor so I'll have more information. Joan
Hartman
P.S...would you clarify what you meant by "we may be encouraging still more
destructive behavior."
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Date: Wed, 21 Aug 2002 17:52:47 -0700
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: Re: PAXIL & GINGO
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Date sent: Wed, 21 Aug 2002 12:26:57 -0700
Send reply to: Parkinson's Information Exchange Network
<[log in to unmask]>
From: "Donald F. McKinley" <[log in to unmask]>
Subject: PAXIL & GINGO
To: [log in to unmask]
> I HAVE BEEN ON PAXIL FOR YEARS IN OUR PAPER IT SAID A JUDGE IN CA.
> PUT STOP ON ADV. PAXIL AS 35 PEOPLE SAID IT WAS A DRUG & HABIT
> FORMING. & GOV. WANTS TO PUT STOP ON GINGKO. I REMEMBER WHEN LOT ON
> LINE TOOL IT.HAS ANY 1 ELSE HURD ANY THING ON THE 2?
>
> I.Y.Q. DON & VIVIAN=LOVE+PD
> LOVE OF MY LIFE-56
>
> BEST MED FOR PD IS
> LOVE & LAUGHTER
>
> DON MCKINLEY
Paxil is not habit-forming. Properly used (and monitored by a
psychiatrist), it is an effective treatment for depression. In other
conditions, such as bipolar disorder (manic-depression) it can be
dangerous.
Gingko is an "alternative medicine" which is not scientifically
proved to be helpful or harmful. I would hesitate to mix it with a
prescription drug like Paxil.
Best,
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, 21 Aug 2002 23:18:15 EDT
Reply-To: Parkinson's Information Exchange Network
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Sender: Parkinson's Information Exchange Network
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From: Rayilyn Brown <[log in to unmask]>
Subject: F-DOPA/LOOK AT UCLA SCANS
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This site shows plenty (almost too many)of F-DOPA and FDG-DOPA scans. Take a
look for yourself. Below is a sample of info.
"The deficit in dopamine uptake characteristic of Parkinson's disease can be
readily seen using radiolabeled L-DOPA and positron emission tomography. In
addition FDG-PET studies of glucose metabolism can be used to differentiate
the dementia that often accompanies Parkinson's disease from the movement
deficits that are associated with pathology of the basal ganglia."
http://www.crump.ucla.edu/software/lpp/clinpetneuro/parkinsons.html
Dr. Abe gave the above site, but no comment on F-DOPA and FDG-DOPA scans when
asked if they diagnosed PD.
simply trying to get at the truth with confidence in my Alma Mater, UCLA,
Rayilyn
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Date: Wed, 21 Aug 2002 23:39:39 EDT
Reply-To: Parkinson's Information Exchange Network
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Sender: Parkinson's Information Exchange Network
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From: Noma DePew <[log in to unmask]>
Subject: Re: PET SCAN Scandal/Bunny
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In a message dated 8/20/2002 10:14:09 PM Pacific Daylight Time,
[log in to unmask] writes:
> Bunny, how do I contact this people, of course I've thought of them. My
> hands don't work and Mario is rewriting it. Help me with email addresses.
> Attention is not guaranteed not matter how well something is written - you
> need to be Charlton Heston or Moses. This was written hastily with the
> little energy I have left. Ray
>
>
Ray -- sorry I just now read your letter, as I was away all day. I also do
not know how to contact FoxNews, CNN or Oprah, but I will try to find out.
I'll do a Google search for one thing. Or, perhaps as I scroll to the next
messages, someone will have already given you the info. Murray of all people
I can think of, probably knows exactly how to do it......more later....
Bunny DePew
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