SOrry about last Message. It got fouled up The body of the message
should read as follows,
-------- Original Message --------
Subject: [Fwd: Re: Citalopram/speaking skills]
Date: Sat, 07 May 2005 16:05:06 -0500
From: Charles Meyer <[log in to unmask]>
To: Mary Ann Ryan <[log in to unmask]>, Rick McGirr
<[log in to unmask]>, parkin <[log in to unmask]>
-------- Original Message --------
Subject: Re: skills
Date: Fri, 6 May 2005 08:38:01 -0400
From: Mary Ann Ryan <[log in to unmask]>
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Date: Mon, 9 May 2005 00:13:37 -0400
Reply-To: Parkinson's Information Exchange Network
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From: "K. F. Etzold" <[log in to unmask]>
Subject: Re: Suggestions Needed
In-Reply-To: <[log in to unmask]>
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Diane Nicolaou wrote:
>I am having jaw surgery later this month and will not be able to open my
>mouth or jaws for 3 weeks after. I am not so concerned about being in intensive
>care on a respirator immediately afterwards or being on a liquid diet for 3
>weeks but how am I to take my Sinemet CR and mirapex? I really rely on them
>every 3 1/2 to 4 hours.
>The Doctors say I will have to crush all meds and my Neuro says I can do
>that it just won't last as long. The pharmacy tells me there is no liquid
>sinemet. This has me worried. Any advice? and how do I make sure they give me my
>meds while I am hospitalized? I'm thinking this is going to be a struggle.
>
It is possible to "liquefy" sinemet. Indeed because it acts more quickly
people have used it for rescue.
This is true especially if it is dissolved in sugar water. So you can
certainly do that for the sinemet.
One caveat is that it acts more quickly and may wear off more quickly.
But the thing to do is to try the meds
in liquid form before the operation and if necessary to adjust the
timing and dosage. You can make a "stock"
solution but it keeps only for about a day. So it would be prudent to
prepare it at least twice a day. Dissolving will
negate the delay effect of the CR sinemet but you can create the effect
by sipping the "juice" at regular intervals
say every half hour. You must estimate the dosage to make it roughly
equivalent to taking Sinemet in tablet form
Maybe using a shot glass to measure the liquid would be a good idea. But
sipping is a good idea anyway because
you even out the dosage.
As for the Mirapex, try to do the same and see if it is effective
dissolved --- again before the operation. I don't think
there is a downside to trying.
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Date: Sun, 8 May 2005 09:58:57 -0700
Reply-To: Parkinson's Information Exchange Network
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From: rayilynlee <[log in to unmask]>
Subject: glutathione
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I got pill form glutathione ( and later found they had past expiration =
dates) a couple of years ago from a sleazy "doctor" who specialized in =
anti-aging but had lost his office near a senior community.=20
I didn't see that it helped though you are supposed to have shots which =
I never followed up on. There is a guy in Florida who does the =
intravenous and he has a video with "testimonials"
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Ray
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Date: Sun, 8 May 2005 10:16:48 -0700
Reply-To: Parkinson's Information Exchange Network
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From: rayilynlee <[log in to unmask]>
Subject: Re: "Brighter Side of Life"/M. Jakobsen
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I sure do hear you M. Jakobsen. My problem is I look so healthy...I don't
look sick and am not screaming (I can barely speak)bloody murder, so how bad
can it be? You have given a good description of what our lives are like.
When I saw the video of Christ dragging that cross in Mel Gibson's new film,
I could identify..just another day in my life. I personally like the clips
from an old Monty Python movie where all these guys were being crucified by
the Romans singing "Looking on the Brighter Side of Life" It was a scene
kind of like Mel Brooks' "Springtime for Hitler".
There was also a scene with a knight still fighting with no arms, legs or
head. I'm going to look for these movies next time I drag myself to the
video store. They were really funny.
Ray
----- Original Message -----
From: "M. Jakobsen" <[log in to unmask]>
To: <[log in to unmask]>
Sent: Saturday, May 07, 2005 5:55 AM
Subject: Re: uncertainty of PD/Jann
> this converstion with Ray and |Jan has hit a mark; the need to be
> HEARDand
> UNDERSTOOD
> so often with family and evesn or especially our doctors I get the
> impression I m just a nuisance and SHOULD TRY HARDER . well it takes
> effort
> just to get up and dresed and move throught the day without whinning a
> nd
> complaining . everything hurts , Im dizzy tired dont sleep . swollen
> legs,
> but there is no visible outward sign of distress so I must just be
> malingering. and very worried about the future - it only gsets worse
> progressivse , dibilitating , dependendcy, dementia, depression.
> actually the only information on treatments , coping , and sides effects
> has
> come from this and other web sights, thank you all . My doctor just
> hands a presciption and says see you next year . Edema weight loss pain
> stifness insomnia - if I dont mention i t he doesnt and I dont think takes
> it seriously
> sory to rant so but this morning I just had to
>
>
> riginal Message -----
> From: "Jann Bell" <[log in to unmask]>
> To: <[log in to unmask]>
> Sent: Friday, May 06, 2005 4:19 PM
> Subject: Re: uncertainty of PD/Jann
>
>
>> Any coping mechanisms in this household come from me. My Dad's primarily
>> attitude is one of denial. I know that the listserv for caregivers is the
>> preferable venue for venting and I am a member. I was just trying to get
>> some feedback on the anti-depressant recently prescribled for Dad from
>> people who are PD people, not caregivers. After reading the listserv I
>> truly believe in and trust the input from people, who, like yourself, are
>> actually living the PD life and who are not in denial and who are trying
>> to make the best of a terrible situation. Thanks for your input. Jann,
>> caregiver to Dad, Jack, 78 yo
>>
>> rayilynlee <[log in to unmask]> wrote:Jann,
>>
>> I tried to explain to the psychologist at the Support Group I attended
>> that
>> you just get accustomed to your situation when it changes for the worse.
>> His Rx was for me to count my blessings, have a positive attitude and
>> compare myself with people worse off. This was not helpful to me. I need
>> strategies for coping alone. I probably do feel sorry for myself from
>> time
>> to time, but my big concern is getting from point A to point B(literally
>> without falling) Example, getting my groceries online has been a great
>> strategy.
>>
>> The hardest thing (I think) about PD is like M.J. Fox described it as
>> being
>> in the middle of the street, knowing a truck is coming, but you don't
>> know
>> just when. Although it is true we all face the unknown, we Parkies do
>> have
>> special challenges. It would be nice to be understood.
>> Ray
>> ----- Original message put: signoff parkinsn
>
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Date: Sun, 8 May 2005 10:30:27 -0700
Reply-To: Parkinson's Information Exchange Network
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Sender: Parkinson's Information Exchange Network
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From: rayilynlee <[log in to unmask]>
Subject: Herbert's doc did use Sinemet
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Thanks to Diane Wysak's informative posts I learned that Herbert's doc =
did use Sinemet. Whether it was used in the final drug combo is =
unknown.
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Ray
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Date: Mon, 9 May 2005 08:16:05 +0200
Reply-To: Parkinson's Information Exchange Network
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From: "M.Schild" <[log in to unmask]>
Subject: Re: Suggestions Needed
In-Reply-To: <[log in to unmask]>
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> How about skin patches? Is sinemet available in skin patches?
no. one agonist comes in skin patch but I cannot remember which ( a new one)
Maryse cg John 76,16
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Date: Sun, 8 May 2005 07:37:26 -0700
Reply-To: Parkinson's Information Exchange Network
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From: Randy L Vinecore <[log in to unmask]>
Subject: Re: Suggestions Needed
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I asked Dr. J. Nutt this very question last week during an intensive week of
a 1st phase drug study (I actually was the first pt in the Nation to try
this drug for this pd, cp 101,606). Since levodopa is absorbed in the small
intestine it can be crushed, disolved and drank or delivered via ng tube.
There is no commercially available iv sln so for my use last week at OHSU
they had to laboriusly sterilize some. The carbidopa and mirapex was stilll
given orally so don' t know there.
\Randy
Games to entertain your brain.
http://www.stargraphics.com
Star Graphics Corp
10943 S Forest Ridge Ln
Oregon City, OR 97045
----- Original Message -----
From: "Diane Nicolaou" <[log in to unmask]>
To: <[log in to unmask]>
Sent: Sunday, May 08, 2005 2:19 AM
Subject: Suggestions Needed
>I am having jaw surgery later this month and will not be able to open my
> mouth or jaws for 3 weeks after. I am not so concerned about being in
> intensive
> care on a respirator immediately afterwards or being on a liquid diet for
> 3
> weeks but how am I to take my Sinemet CR and mirapex? I really rely on
> them
> every 3 1/2 to 4 hours.
> The Doctors say I will have to crush all meds and my Neuro says I can do
> that it just won't last as long. The pharmacy tells me there is no liquid
> sinemet. This has me worried. Any advice? and how do I make sure they
> give me my
> meds while I am hospitalized? I'm thinking this is going to be a
> struggle.
>
> ----------------------------------------------------------------------
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Date: Sun, 8 May 2005 07:53:02 -0700
Reply-To: Parkinson's Information Exchange Network
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Sender: Parkinson's Information Exchange Network
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From: Randy L Vinecore <[log in to unmask]>
Subject: Re: Suggestions Needed
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On pg 75 of "pd medications 3rd ed" from npf it gives a lot more info on
liquid sinemet. If you don't have this pub maybe someone w/o sore finger
tips could do some transcribing.
\Randy
Games to entertain your brain.
http://www.stargraphics.com
Star Graphics Corp
10943 S Forest Ridge Ln
Oregon City, OR 97045
----- Original Message -----
From: "Diane Nicolaou" <[log in to unmask]>
To: <[log in to unmask]>
Sent: Sunday, May 08, 2005 2:19 AM
Subject: Suggestions Needed
>I am having jaw surgery later this month and will not be able to open my
> mouth or jaws for 3 weeks after. I am not so concerned about being in
> intensive
> care on a respirator immediately afterwards or being on a liquid diet for
> 3
> weeks but how am I to take my Sinemet CR and mirapex? I really rely on
> them
> every 3 1/2 to 4 hours.
> The Doctors say I will have to crush all meds and my Neuro says I can do
> that it just won't last as long. The pharmacy tells me there is no liquid
> sinemet. This has me worried. Any advice? and how do I make sure they
> give me my
> meds while I am hospitalized? I'm thinking this is going to be a
> struggle.
>
> ----------------------------------------------------------------------
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> mailto:[log in to unmask]
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Date: Mon, 9 May 2005 02:27:04 -0400
Reply-To: Parkinson's Information Exchange Network
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Sender: Parkinson's Information Exchange Network
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From: Donna Thrash <[log in to unmask]>
Subject: Re: glutathione
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Im from alabama and Ive tried the glutathiione iv treqtment and it seemed to help but for me only lasted a day, which he told me it could possibly last a day or 2. It is extemely expensive unless you know of someone that can give it to you, which I did, but after 3-4 times I reqlly couldnt tell a differen ce. Ive heard of that Dr in florida and also heard of people it really helpinng...but theirs vitamins they suggest u take which is also expensive..but I say if u havve PD..its worth the money and time to give it a try...I know theres only a few places in the u.s. that is doing it...in fact I gave a month supply away a year ago when i decided not to finish it...Donna
>
> From: rayilynlee <[log in to unmask]>
> Date: 2005/05/08 Sun PM 12:58:57 EDT
> To: [log in to unmask]
> Subject: glutathione
>
> I got pill form glutathione ( and later found they had past expiration dates) a couple of years ago from a sleazy "doctor" who specialized in anti-aging but had lost his office near a senior community.
>
> I didn't see that it helped though you are supposed to have shots which I never followed up on. There is a guy in Florida who does the intravenous and he has a video with "testimonials"
>
> ----------------------------------------------------------------------
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> Ray
>
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Date: Mon, 9 May 2005 08:51:33 +0200
Reply-To: Parkinson's Information Exchange Network
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Sender: Parkinson's Information Exchange Network
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From: "M.Schild" <[log in to unmask]>
Subject: Re: uncertainty of PD/Jann
In-Reply-To: <[log in to unmask]>
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> It has been my understanding that DBS was reserved for Parkies much younger
> than my 78 yo Dad.
You are right. Age ( over 69) and cognitive problems are contraindications for
DBS
Maryse cg JOhn 76,16
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Date: Mon, 9 May 2005 10:35:05 EDT
Reply-To: Parkinson's Information Exchange Network
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Sender: Parkinson's Information Exchange Network
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From: Dolores Buente <[log in to unmask]>
Subject: Re: uncertainty of PD/Jann
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Dear Jann,
When I sent my message about the possibility of DBS as an option for your
father, I was not taking into consideration his age ( I had deleted your original
message and was only going by memory about the details.) Sorry that I was
recommending something without being fully aware of all of the facts. The great
thing about this group is that if one of us is a little off- track in our
advice there will be people/or persons who will follow up on it and set things on
the right track. For this I am most grateful. I am always amazed at the
knowlege that this group holds and is willing to pass on to the rest of us.
Dee
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Date: Mon, 9 May 2005 09:22:33 -0500
Reply-To: Parkinson's Information Exchange Network
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From: George Docken <[log in to unmask]>
Subject: Re: Ailing elderly new face of drug Many turning to pot to ease
pain
In-Reply-To: <[log in to unmask]>
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One of the favorite topics of late night discussions back in my misspent
youth was the pros and cons of using marijuana. The scariest negative I
heard at that time was that smoking weed would "temporarily inhibit the
ability to learn." That effect, it was rumored, was caused by the drug
insulating the nerve endings that normally linked together while you were
learning something. Shortly after hearing this, I was introduced to a
person in his late twenties who bragged about having been stoned
continuously since he started high school. As we talked, I noticed he was
demonstrating all the mental, verbal and social skills of a below average
high school student. That experience convinced me to abstain from
cannabis ever since. HOWEVER, if someone comes up with a convincing
argument that this drug reduces my most aggravating PD symptoms, I may be
willing to learn less in exchange for the relief.. Most sincerely, Geo.
"M.Schild" <[log in to unmask]>
Sent by: Parkinson's Information Exchange Network
<[log in to unmask]>
05/07/05 01:54 AM
Please respond to
Parkinson's Information Exchange Network <[log in to unmask]>
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Subject
Re: Ailing elderly new face of drug Many turning to pot to ease pain
> Walters argues there is not a whiff of clinical proof qualifying smoked
pot
> as medicine. Any beneficial compounds that do exist in the leafy plant,
he
> said, should be synthesized, sent through the rigors of the regulatory
> process and packaged as a pharmaceutical, not smoked like black-market
> weed.
Walters ( whoever he is)is wrong. Pot has been recognized useful even
against
atheroma ( in small quantitites). it can be useful against tremor too.
Of course, govts want to cash in.
It has been synthetized, it is called Sativex
maryse cg John, 76,16
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Date: Mon, 9 May 2005 15:05:17 -0400
Reply-To: Rick McGirr <[log in to unmask]>
Sender: Parkinson's Information Exchange Network
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From: Rick McGirr <[log in to unmask]>
Subject: New Parkinson's book
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Hello, everyone. FYI...
There was an article from the Sarasota Observer (David Wexler) in the
Amherst Bee about a new book due to be published, written by a PWP,
David Anderson. The book is entitled "How to Tame Parkinson's by
Keeping Fit". Release is scheduled for June '05. Anderson was
diagnosed in 1995, and is now 73. He says he now works out 6 days a
week, 3 hours a day.
Here are some exerpts. I couldn't provide a link to the Article.
"Anderson says his trainer challenged him and motivated him, and
showed him the importance of having a positive mental attitude."
"With the help of his personal trainer, Anderson's balance was
steadier, his walk was more decisive, his posture was straighter and
his confidence was stronger."
"Although he still suffers from many of the symptoms of Parkinson's,
Anderson said his fitness regimen has reduced the side effects."
Anderson's email address was published in the article.
[log in to unmask]
Enjoy Spring!
Rick McGirr
Email: [log in to unmask]
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Date: Mon, 9 May 2005 10:22:55 -0400
Reply-To: Parkinson's Information Exchange Network
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From: Peggy Willocks <[log in to unmask]>
Subject: Re: Suggestions Needed
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Liquid sinemet is not as easily attainable in the U.S. due to dosing
problems (easily taking too much). It can be purchased, however, from other
sources (for example, Canada), and in some cases, within the states.
The use of "homemade" liquid sinemet has long been used to help with on/off
fluctuations and/or those who do not get a quick reaction to taking a pill
for L-dopa. REMEMBER: DO NOT CRUSH SINEMET CR - PER THE MANUFACTURER.
"Liquid Sinemet has the same effect as the pill form.
In fact it is made by crushing regular Sinemet 25/100 tablets and dissolving
that in water and a little vitamin C. The main advantage to liquid Sinemet
is that it can allow a person to more easily take very small amounts of
Sinemet very frequently. Both the tablet and the liquid are very well
absorbed. Liquid doesn't work any "faster". Occasionally, a person also
has an easier time swallowing liquid than taking the pill.* If the person
is taking medication through a G tube (tube into the stomach), the usual way
to do that is to simply crush the regular Sinemet, put it in a little water
and give it as a bolus in a syringe followed by a flush of plain water. It
is not usually worth the trouble to make up a batch of liquid Sinemet.
Liquid Sinemet has to be made up fresh each day. It is not advisable to use
liquid Sinemet rather than the tablets unless you have discussed it with
your physician."
(Information from the APDA Parkinson Newsletter)
*Schwarz/Pharma now markets a new "pre-dissolved" form of
carbadopa/levedopa, known as Parcopa. You do not have to take water with it
as it simple disintegrates on your tongue. It also has a "minty" taste.
SEE RECIPE FOR LIQUID SINEMET BELOW _ ALWAYS CONSULT WITH YOUR DOCTOR FIRST!
Peggy
From the James Parkinsons website (Everything you ever wanted to know about
"Liquid Sinemet" and more!)
http://james.parkinsons.org.uk/Brian/liquid-sinemet.html
How to Make Liquid Sinemet (Note that one ounce is about the same as 30 ml
or 30 cc)
1. Sinemet (Carbidopa/L-Dopa), with the maximum solubility of L-Dopa
being approximately 2 mg/ml.
2. Ginger ale
Formula: to a 10 ounce (300 ml) bottle of ginger ale, add one 25/250
Sinemet (Carbidopa/L-Dopa) tablet, or three 1/2 Sinemet 10/100 tablets.
After the fizzing settles down you will have a solution of approximately 1
mg per ml for the Sinemet 25/250 (really 0.83 mg/ml of the 25/250
Sinemet), or 0.5 mg/ml of the 10/100 Sinemet.
Since most people swallow between 20 and 30 ml per swallow, every
swallow is considered approximately to be 25 mg of L-Dopa for the 25/250
Sinemet, and 10 to 15 mg of the 10/100 Sinemet. If you keep it cool and
out of sunlight it will be stable for at least 24 hours.
B. Liquid Sinemet Made With Orange Juice
Formula:
1. To find the volume of orange juice to put the pills in:
Count the total number of 25/100 pills you are taking per day, and
multiply this by 100 cc (100 cc is the same as 100 ml, and there are 5
cc in a teaspoon).
So if you are taking ten (10) 25/100 pills each day, you will need
10 X 100 cc = 1000 cc of orange juice or Tang
2. To determine the amount of Vitamin C to use:
For every 1000 cc of orange juice, you need two teaspoons (2 gm) of
Ascorbic Acid (powdered Vitamin C). Add this to the orange juice.
3. Add the pills to the orange juice, shake, and let stand
-----Original Message-----
From: Diane Nicolaou [mailto:[log in to unmask]]
Sent: Sunday, May 08, 2005 5:19 AM
Subject: Suggestions Needed
I am having jaw surgery later this month and will not be able to open my
mouth or jaws for 3 weeks after. I am not so concerned about being in
intensive
care on a respirator immediately afterwards or being on a liquid diet for 3
weeks but how am I to take my Sinemet CR and mirapex? I really rely on them
every 3 1/2 to 4 hours.
The Doctors say I will have to crush all meds and my Neuro says I can do
that it just won't last as long. The pharmacy tells me there is no liquid
sinemet. This has me worried. Any advice? and how do I make sure they
give me my
meds while I am hospitalized? I'm thinking this is going to be a struggle.
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Date: Mon, 9 May 2005 08:18:15 -0600
Reply-To: Parkinson's Information Exchange Network
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Sender: Parkinson's Information Exchange Network
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From: "George L. Bousliman" <[log in to unmask]>
Subject: Re: Suggestions Needed
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Diane,
I believe Parcopa will definitely help you. It's a fairly new med--
identical to sinemet, except it dissolves in your mouth. It works for me;
I have real problems swallowing in the morning. I was between a rock
and a hard place, being unable to function without meds, and being unable to
swallow to get the firrst pill into my system in the morning.
I take Parcopa 25/100, but believe it is available in different strengths..
Good luck.
George L. Bousliman
----- Original Message -----
From: "Susan Fine" <[log in to unmask]>
To: <[log in to unmask]>
Sent: Sunday, May 08, 2005 7:59 AM
Subject: Re: Suggestions Needed
> Diane: First, good luck with your surgery. Some of us would have a
> dreadful time trying keep our mouths shut for 3 minutes - least of all for
> 3
> weeks! I am sure your computer will come in handy once you are home. As
> for sinemet, there is a "recipe" for liquifying it as per National
> Parkinson
> Foundation booklet on medications. If you don't already have this, call
> NPF
> (1-800-327-4545) and ask for their free booklets, including the one on
> medications. Don't know about your other meds. NPF "formula" is below,
> but
> BE SURE to discuss this with your PD doctor because dosage needs may
> vary -
> and this involves regular sinemet, not CR. He may want to give your a
> morning "jump start" dose and change the amount for hourly doses
> throughout
> the day. Bring your doctor(s) the information in the NPF booklet. (And
> see
> if NPF can send it to you quickly).
>
> Mix the following ingredients in a one quart PLASTIC (do not use
> metal)container with lid:
>
> * 10 tablets sinemet 10/100 or 25/100 tablets (=1000mg
> levodopa)
> * 1/2 tsp Ascorbic acid crystals (=approx 2 gms)
> * 1 quart tap or distilled water (1,000 ml)
>
> Rotate container or shake gently until tablets dissolve (don't need to
> crush
> the pills) Formula will maintain full-strength and purity for 24-48 hours
> in refrigerator.
>
> My husband had abdominal surgery several years ago and would have been
> without sinemet for a week (Yikes)! if I had not given this info to his
> urologist and the hospital pharmacy. They administered the liquid sinemet
> via naso-gastric tube until he was able to take it the normal way. You
> should not abruptly stop the sinemet, it can lead to complications. Make
> sure your Neuro and the MD doing your surgery confer on this and orders
> are
> written and rewritten when you move from IC to regular hospital floor.
> Bring
> copies of your medication schedule to hospital with you and distribute to
> nursing staff more than once. Our situation went very smoothly once I got
> everyone on board - although nursing medication schedules are not
> necessarily in keeping with the needs of PWPs. If you can have family
> and/or friends there with you as much as possible they can run
> interference
> and communicate with the staff.
>
> Bring one of those "slates" (where you lift up a film to erase what you
> have
> written) - if they still make them. Or a clip board and lots of paper
> with
> a pencil attached so it is readily available. That should help you
> communicate your needs.
> Again, best of luck. Hope this is helpful. Let us know how you are
> doing.
> Best,
> Sue
>
> ----- Original Message -----
> From: "Diane Nicolaou" <[log in to unmask]>
> To: <[log in to unmask]>
> Sent: Sunday, May 08, 2005 5:19 AM
> Subject: Suggestions Needed
>
>
>>I am having jaw surgery later this month and will not be able to open my
>> mouth or jaws for 3 weeks after. I am not so concerned about being in
>> intensive
>> care on a respirator immediately afterwards or being on a liquid diet
>> for
>> 3
>> weeks but how am I to take my Sinemet CR and mirapex? I really rely on
>> them
>> every 3 1/2 to 4 hours.
>> The Doctors say I will have to crush all meds and my Neuro says I can do
>> that it just won't last as long. The pharmacy tells me there is no liquid
>> sinemet. This has me worried. Any advice? and how do I make sure they
>> give me my
>> meds while I am hospitalized? I'm thinking this is going to be a
>> struggle.
>>
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Date: Mon, 9 May 2005 11:19:05 -0500
Reply-To: Parkinson's Information Exchange Network
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Sender: Parkinson's Information Exchange Network
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From: Charles Meyer <[log in to unmask]>
Subject: my 3rd attempt to send this message
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I don't know why this did not come through in my 2 previous attempts
Sorry about any inconvenience this may have caused,.
Rick, Mary Ann and Jann.
Unfortunately Mary Ann's expense with her husband is similar to mine .
I have had PD diagnosed 16 years ago and I have had a significant
reduction of ny speaking skills and consequently my ability to converse
with others. My ability to speak has diminished due to my motor
function of my facial muscles I form words with as well as slowing of my
thought processes and inability tot word find .. This leads to social
withdrawal. My cognitive abilities are only slightly affected and I
want to join conversations but I speak so slowly and haltingly that it
is quite difficult. for me and the people I do converse with. Talking on
the phone is quite difficult too.
BTW citralopam is an antidepressant which came out after I stopped
practice. Therefor I have no experience with it . It is my guess than
the CLINICAL NURSE SPECIALIST that your husband saw was concerned wit
his speech reduction as a result of depression which can create a
clinical picture similar to that of dementia.
Charlie
Charles T.Meyer, MD
Middleton WI
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Date: Mon, 9 May 2005 10:50:22 -0700
Reply-To: Parkinson's Information Exchange Network
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From: rayilynlee <[log in to unmask]>
Subject: Re: Age for DBS
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I was told that 70 was the optimum age, although it does depend upon the
person and whether you have dementia or not. I had my DBSs when I was 67, 2
years ago. Ray
----- Original Message -----
From: "Jann Bell" <[log in to unmask]>
To: <[log in to unmask]>
Sent: Sunday, May 08, 2005 12:39 PM
Subject: Re: uncertainty of PD/Jann
> It has been my understanding that DBS was reserved for Parkies much
> younger than my 78 yo Dad. And although his cholesterol is excellent, his
> blood pressure normal, non-diabetic, no discernable heart condition, no
> allergies, in other words, fairly healthy excluding PD, he smokes and is
> quite old. Jann, caregiver to Dad, Jack, 78
>
> Dolores Buente <[log in to unmask]> wrote:Dear Jann,
>
> Sorry that my response to your inquiry is somewhat delayed. sometimes I
> get
> behind on the messages on this List and maybe the suggestion of DBS
> surgery
> has already been mentioned.
>
> Have you inquired into DBS? You say that your dad has been taking Sinemet
> for quite a long time. It is possible that he is to the point that the
> medication can no longer be as effective to control his symptoms as it
> once was. I
> know that DBS is a rather drastic option and that there are both good and
> bad
> outcomes. I hope that you have access to advice from knowledgeable doctors
> as
> to whether your dad would be a good candidate for this procedure.
>
> As I said earlier, maybe I'm out of the loop on the responses that you've
> received to date and this could have already been mentioned.
>
> Dee
>
> ----------------------------------------------------------------------
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Date: Mon, 9 May 2005 10:58:48 -0700
Reply-To: Parkinson's Information Exchange Network
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Sender: Parkinson's Information Exchange Network
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From: rayilynlee <[log in to unmask]>
Subject: Re: Herbert's Doctor In Demand
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thanks for the info, Linda. I heard too that he was not responding so well.
I remember another case some years ago who a guy suddenly came out of a coma
and talked, then slipped back into it. I think he died and was also a
firefighter or police officer.
Ray
----- Original Message -----
From: "Linda J Herman" <[log in to unmask]>
To: <[log in to unmask]>
Sent: Sunday, May 08, 2005 7:30 AM
Subject: Re: Herbert's Doctor In Demand
> Ray,
> There was an article about Donald Herbert in today's Buffalo News.
> Unfortunately it states that he has become "less active again"
>
> Regarding the medications used it reports:
>
> "On Herbert, Ahmed first tried Aricept, an Alzheimer's disease therapy
> that increases the amount of a brain neurotransmitter, in combination
> with Provigil, a drug for sleepiness that stimulates the central nervous
> system, and Sinemet, a Parkinson's disease medication that replenishes
> dopamine, another critical chemical messenger in the brain.
>
> When that drug cocktail failed to work, Ahmed said he tried a new
> combination that may have included at least one of the original
> medications. While declining to be specific about the drugs he used,
> Ahmed said that one is commonly prescribed for attention deficit
> hyperactivity disorder, another to treat Parkinson's and a third to treat
> depression. "
>
> ....so it sounds like the PD drug was Sinemet.
>
> It also discusses current studies on severe brain injuries. Amantadine is
> also used in treating PD:
>
> "Few studies have been conducted on treatments for the severely
> brain-injured because of the expense and ethical dilemma of testing
> medications on patients who do not have the capacity to consent, said Dr.
> Joseph T. Giacino, a neuropsychologist at the JFK Johnson Rehabilitation
> Institute in Edison, N.J.
>
> However, Giacino is now directing an international clinical study funded
> by a $3 million grant from the National Institute on Disability and
> Rehabilitation Research to test the effectiveness of a drug called
> amantadine hydrochloride.
>
> The medication, introduced in the 1960s as an antiviral agent, has been
> shown to enhance the transmission of nerve impulses in the brain.
>
> Researchers also are looking at the possible benefit of pacemaker-like
> electric stimulators implanted in the brain, a therapy now used in some
> Parkinson's patients..."
>
> The full article is online at:
> http://www.buffalonews.com/editorial/20050508/1021119.asp
>
> ----------------------------------------------------------------------
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Date: Mon, 9 May 2005 19:54:07 EDT
Reply-To: Parkinson's Information Exchange Network
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Sender: Parkinson's Information Exchange Network
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From: Robert Arlin <[log in to unmask]>
Subject: Re: Suggestions Needed
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Good Evening;
You can find the formula for liquid sinemet at the following web site:
http://www.parkinson.org/medE2:htm. It is stated on that site that it is crucial
you consult your physician for specific dosing. Hope this helps. Jane
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Date: Mon, 9 May 2005 06:11:45 EDT
Reply-To: Parkinson's Information Exchange Network
<[log in to unmask]>
Sender: Parkinson's Information Exchange Network
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From: Myfirstname Mylastname <[log in to unmask]>
Subject: Re: Care list
Comments: cc: [log in to unmask]
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Dear Camilla Flintermann and Jeff Jones;
My wife is my crave giver and she would like to join your CARE Givers Group.
We belong to a small exercise group in Monroeville, Pa. Our home phone is
412-824-8046, our address is: Mrs. Kathy Ferraccio, 1116 Clinton Street,
North Versailles, PA 15137-2118. I would like to get some information on your
group as soon as you can. Our E-mail address is ERFerraccio @aol.com.
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Date: Tue, 10 May 2005 08:54:07 +0200
Reply-To: Parkinson's Information Exchange Network
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Sender: Parkinson's Information Exchange Network
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From: "M.Schild" <[log in to unmask]>
Subject: Re: Ailing elderly new face of drug Many turning to pot to ease
pain
In-Reply-To: <[log in to unmask]>
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> =A0HOWEVER, =A0if someone comes up with a convincing
> argument that this drug reduces my most aggravating PD symptoms, I may be
> willing to learn less in exchange for the relief..
John has been using it first as a sleeping aid. He realized it had a good=20
effect on his tremor and is using it when his tremor is too bad. First, it=
=20
accelerates the rate of tremor for 1-3 mn and then the tremor stops. It doe=
s=20
cause a transient drop in BP so be careful if you haven=B4t smoked anything=
for=20
a long time. 1-3 puffs are usually enough.
Maryse cg JOhn 76,16
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Date: Tue, 10 May 2005 04:13:12 -0500
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From: John Cottingham
<[log in to unmask]>
Subject: Determined duo battle Parkinson's together Doctors claim the odds
of the DeLand couple both being diagnosed with the disease are
astronomical.
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The source of this article is the Orlando Sentinel: http://tinyurl.com/altsg
THE VIEW FROM HERE: TERRY O. ROEN
Determined duo battle Parkinson's together
Doctors claim the odds of the DeLand couple both being diagnosed with the=20
disease are astronomical.
By Terry O. Roen
Sentinel Staff Writer
May 9, 2005
DELAND -- "The View From Here" is a slice of local life by Sentinel=20
reporters. Today, staff writer Terry O. Roen contributes.
When Annette Gillespie's muscles refuse to move, her husband whispers=20
lyrics from a song into her ear.
The tunes work like a balm on her rigid limbs that have suffered for 24=20
years with the debilitating effects of Parkinson's disease. The retired=20
Stetson University mathematics professor was diagnosed with the disease on=
=20
her 50th birthday.
In a twist of fate, Bryan Gillespie, a former Stetson English professor,=20
received the same diagnosis seven years ago. His wife diagnosed his=20
symptoms of slowness, a shuffled walk and a lack of facial expressions=20
before a doctor confirmed he had the chronic neurological disease that has=
=20
no cure.
"When we got married, I vowed to share everything," says Bryan Gillespie,=20
73. "I didn't know it included this."
Doctors claim the odds of a married couple being diagnosed with Parkinson's=
=20
are astronomical. Dr. Richard S. Burns, director of the Muhammad Ali=20
Research Center at Barrow Neurological Institute in Phoenix, has followed=20
the Gillespies' cases for the past 20 years. Ironically, Bryan Gillespie=20
was enrolled in a Parkinson's study run by Burns at the National Institutes=
=20
of Health in Bethesda, Md. before he was diagnosed. He was one of the=20
control patients when he joined his wife in an effort to help doctors=20
better diagnose the disease.
During Burns' 20 years following thousands of Parkinson's patients, he said=
=20
the Gillespies are only one of two couples he has seen with the disease.
Annette Gillespie continued to teach at Stetson until her retirement in=20
1992. She walked the four blocks to school wearing a Walkman with marching=
=20
music that helped her lift her feet high to prevent a fall. The 74-year-old=
=20
suffers from dyskinesia, the involuntary body movements that appear as=20
jerking, twisting and fidgeting, caused by the medications that keep her=20
mobile.
The movements are more noticeable to strangers who stare at restaurants=20
than to the mother of three and grandmother of five, who asks her husband=20
if the movements stop while she sleeps. The constant twisting goes dormant=
=20
when she finally gives in to sleep, her husband said.
"My mom was never the type of person who sat around a lot," says Susan=20
Gillespie, her oldest daughter who is a senior editor for Harcourt School=20
Publishers in Orlando.
Annette Gillespie still cooks but her recipes lean toward pot roasts and=20
things that can be tossed into a crockpot. She no longer walks or drives=20
but she does water exercises in her backyard pool so her muscles can still=
=20
propel her to safety after a fall.
The couple also attend a weekly exercise class led by Liz Schumaker, a=20
retired exercise science professor from Stetson, who created the classes=20
specifically for her friends 15 years ago. Both say the hourlong class=20
eases their stiffness, improves their disposition and helps them socialize=
=20
with others stricken with the disease. The exercisers all belong to the=20
130-member DeLand Parkinson's Support Group, which Annette Gillespie=20
started 20 years ago.
Bryan Gillespie's mobility is not as restricted. He suffers from a=20
different form of the disease that manifests itself with tremors, stiff=20
muscles and difficulty balancing. He describes a tough spell last month=20
when he was getting adjusted to a new medication and his muscles froze.
"She took over as people do when there's a real marriage," he says.=20
"Annette is a source of all kinds of comfort and love."
The couple continue to live in the gray shingle home they built in 1967 on=
=20
21/2 acres of scrub pine and oak. Their philosophy is to stay active by=20
attending the Sunday and Wednesday services at First Baptist Church. They=20
share a faith that keeps their spirits buoyed.
"I've never once asked God, `Why me?' " says Annette Gillespie. "When I=20
pray for healing, I pray for everyone else."
They also continue to dine each month with a group of Stetson friends in a=
=20
supper club they've enjoyed for 50 years. The couples eat at each others'=20
homes and split the grocery cost for the host who provides the meal. The=20
divvy ranges from $2.75 to $3.25 apiece, depending on the dinner.
"They are absolutely amazing," says John Gillespie, their youngest son who=
=20
lives in Charlotte, N.C. "They have rigged up everything possible to remain=
=20
independent."
The Gillespies have installed a medical-alert system throughout their home,=
=20
there is a doorbell next to an easy chair in the family room, a metal pole=
=20
to help them to get up from their chairs and a lift over their bed. Their=20
plan is to remain in their home until one of them dies, then the remaining=
=20
spouse will go live with their daughter Mary Stackhouse, an English teacher=
=20
in Silver Spring, Md.
"They are a team," says Stackhouse, 41. "I don't know what they would do=20
without each other." The couple sit in the family room watching a=20
6-year-old movie of their son's wedding. Bryan Gillespie points to the=20
sequence where he sings "When the Saints Go Marching In" to his wife when=20
her feet froze. He still is amazed at the ease of movement as they glide=20
down the aisle together.
Copyright =A9 2005, Orlando Sentinel
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Date: Tue, 10 May 2005 04:14:25 -0500
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From: John Cottingham
<[log in to unmask]>
Subject: Patients' stories needed for Parkinson's research
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The source of this article is Tribune Review: http://tinyurl.com/9x6fa
Patients' stories needed for Parkinson's research
By The Tribune-Review
Monday, May 9, 2005
Researchers hoping to compile information about Parkinson's disease say
patients' own stories could hold the key to a cure.
"Don't Be Silent: Tell Us Your Story" is the first nationwide effort to
learn more about Parkinson's directly from people who have the central
nervous system disorder.
The first-person accounts are being compiled by the Muhammad Ali Parkinson
Research Center, based in Phoenix.
"These are the people who understand the impact of the disease better than
anyone, so we are asking them to share their knowledge with doctors and
researchers," said Dr. Richard S. Burns, medical director at the center.
About 1.5 million Americans have Parkinson's, a chronic, progressive
disorder that causes tremors, stiffness and bradykinesia, or slowness of
movement. Doctors believe the disease is caused by a genetic
predisposition, possibly coupled with environmental factors that have not
yet been identified.
Although Parkinson's is not fatal, it has an impact on everyday life. Pope
John Paul II and boxer Muhammad Ali, for whom the center is named, are
among the well-known figures whose conditions have drawn attention to the
disease.
Survey participants will be asked to complete a confidential, online survey
that takes less than an hour to complete. Results will be entered in the
Parkinson's Disease Registry, a project under the direction of the Barrow
Neurological Institute at St. Joseph's Hospital and Medical Center in Phoenix.
Responses will be kept private, and there is no charge to participate. The
data will be used in summary form only when it appears in scientific
publications. Eligible respondents will be notified about clinical trials
but are under no obligation to join them.
Eventually, the survey data will be made available to doctors and
researchers who are looking for a cure or developing techniques to better
manage the disease.
To achieve its goals, the center hopes to have 20,000 Parkinson's patients
fill out the survey. It is available online at the center's Web site,
www.parkinsonregistry.com.
Patients without access to a computer can request a printed copy of the
survey, along with a postage-paid envelope to return the results, by
calling 877-287-7122.
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Date: Tue, 10 May 2005 04:15:52 -0500
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From: John Cottingham
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Subject: Pfizer's Mirapex Faulted in Gambling Addiction Suits (Update2)
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The source of this story is Bloomberg: http://tinyurl.com/bjtuf
Pfizer's Mirapex Faulted in Gambling Addiction Suits (Update2)
May 9 (Bloomberg) -- Pfizer Inc. and Boehringer Ingelheim Pharmaceuticals
Inc. were accused of distributing a drug for treating Parkinson's disease
that turned some people into gambling addicts, in a lawsuit filed in
Ontario Superior Court.
The Canadian suit follows a similar complaint filed in September in federal
court in the Central District of California. Both suits are seeking class
action status.
Several million U.S. residents take Mirapex for Parkinson's and other
conditions, said attorney Daniel Kodam, who filed the California case.
Mirapex, distributed in the U.S. by both companies and in Canada by a
Boehringer unit, mimics the action of dopamine in the brain, he said. Lack
of dopamine can lead to tremors and rigidity, he said. About 2.5 percent of
Mirapex users develop a gambling addiction, Kodam said.
``These people have no history of gambling,'' said Darcy Merkur, a lawyer
with Thomson, Rogers, who filed the Canadian suit Friday. ``They don't have
a propensity to gamble.''
Bryant Haskins, a spokesman for New York-based Pfizer, the world's largest
drugmaker, said the company hadn't had an opportunity to review the suit
filed in Canada and was ``not in a position to respond directly to it.''
Haskins said Pfizer wasn't aware ``of evidence establishing a causal
relationship between Mirapex and compulsive behavior.'' He said the company
sent the U.S. Food and Drug Administration all reports it had received of
such behavior ``in association with'' Mirapex.
Gambling Link
Haskins said Pfizer and Boehringer also added statements to Mirapex labels
to inform health care professionals that ``there have been infrequent
spontaneous post-marketing reports of compulsive behavior in patients who
reportedly had received the medication.''
Ingelheim, Germany-based Boehringer, the world's biggest family-owned drug
company, didn't respond to calls seeking comment.
According to a study published in the Aug. 12, 2003, issue of
``Neurology,'' researchers concluded that high doses of some medications
used to treat Parkinson's, including Mirapex, might lead to a gambling
addition among some patients.
Researchers at the Muhammad Ali Parkinson's Research Center in Phoenix
examined data of almost 2,000 Parkinson's patients over the course of a
year. Nine of the patients were diagnosed as pathological gamblers, and
seven of them had started gambling within a month of an increase in the
dosage of Mirapex or another Parkinson's drug they were taking.
Gambling Losses
Two patients lost more than $60,000, and none of them had a problem before
taking the drugs, according to the study.
Gerard Schick, a resident of Midland, Ontario, a city north of Toronto and
near a government-approved Indian casino, lost about C$100,000 ($80,757)
playing slot machines while taking Mirapex, Merkur said. Other Mirapex
users who have come forward claimed to have lost as much as C$750,000, he
said.
Merkur is seeking C$50 million in punitive damages, plus an unspecified
amount to cover the actual gambling losses incurred. He's also seeking C$3
million per person for pain and suffering, emotional hardship, and loss of
earnings. Merkur said he expects more than 100 Canadians will be
represented in the suit.
In the California case, Kodam said he will meet with attorneys for the two
companies prior to a scheduled June 23 hearing to amend the complaint and
convert it to a class action.
The Canadian case is Between Gerard Schick and Boehringer Ingelheim
(Canada) Ltd., No. 05CV288851 CP, Ontario Superior Court of Justice, Toronto.
To contact the reporter on this story:
Joe Schneider in Toronto at [log in to unmask]
Last Updated: May 9, 2005 17:31 EDT
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Date: Tue, 10 May 2005 04:17:15 -0500
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From: John Cottingham
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Subject: Magnetic treatment clinic draws controversy
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The source of this article is the Arizona Daily Star: http://tinyurl.com/b9ylu
Magnetic treatment clinic draws controversy
By Carla McClain
ARIZONA DAILY STAR
A new and controversial Tucson clinic that promises hope for people
suffering from incurable and often untreatable medical problems has
triggered widespread skepticism throughout the local medical community and
may face the scrutiny of federal health authorities.
Among the devastating ailments that the clinic - known as the Advanced
Magnetic Research Institute - claims success in treating are brain and
spinal cord injury, Alzheimer's and Parkinson's diseases, heart and liver
failure, multiple sclerosis, muscular dystrophy, cerebral palsy, autism and
even the ravages of a stroke.
Open just two weeks, the AMRI clinic uses an experimental device to deliver
powerful electromagnetic currents that operators say can heal, repair or
regenerate the damaged body part, to cure or at least improve symptoms of
these disorders.
The physician supervising the Tucson AMRI said he took the position after
trying the therapy himself - on a damaged thigh muscle that hobbled him -
and found it successful at restoring his mobility.
"I know it works, and I know it's safe," said Dr. Joseph McCready, citing
an analysis of results at similar clinics around the country showing a 70
percent success rate - either curing or significantly easing injury or
disease.
But the clinics' unproven claims, and the high cost of the therapy, have
caught the attention of the U.S. Food and Drug Administration.
"This device is not approved or cleared by the FDA," said Julie Zawisza,
with the agency's Office of Compliance.
"That means it cannot be marketed or promoted or advertised as if it has
clinical utility. And that is the case even if the device is under clinical
study."
FDA regulations also prohibit charging fees to make a profit from such a
device. Operators can charge only enough to recover the cost of providing
the therapy, Zawisza said.
A for-profit enterprise, AMRI charges $45 an hour for its 10,000-pound
electromagnetic field device, the "magnetic molecular energizer." With
recommendations of at least 100 to 200 hours of treatment, that means
thousands of dollars per patient - not covered by insurance.
"The exorbitant amounts being charged for this do raise a red flag at the
FDA, as do what appear to be claims of relief for these diseases," Zawisza
said.
Although the use of magnets for healing is considered an unproven and
experimental alternative therapy, it certainly is nothing new, with reports
dating back 3,000 years.
Ancient Greeks and Egyptians reported improved well-being when they lay on
magnetized rocks - lodestones - after strenuous work. Today, several pro
athletes, including tennis star Lindsay Davenport, say magnets have helped
relieve pain and heal injuries.
Most people who try it use small static magnets, placed on the ailing area.
Although reports of relief are numerous, actual scientific studies are few
and have conflicting results.
"Scientific research so far does not firmly support a conclusion that
magnets of any type can relieve pain," states the National Institutes of
Health on the subject. And no studies have shown any effectiveness against
chronic disease.
That includes the more powerful electromagnetic technology used at AMRI,
which generates magnetic fields via electric currents. That type of magnet
therapy is approved and used for one medical purpose only - to heal
resistant bone fractures, according to the NIH.
That's why, despite its claims of success with a myriad of difficult
medical conditions, all patients undergoing this therapy at the local
clinic must sign a consent form stating that they understand it's under
research and may not provide a cure.
"This is still considered experimental, so every treatment we do will be
submitted to the FDA," said McCready, a respected longtime Tucson
ophthalmologist who came out of retirement to be chief clinical
investigator for the local AMRI.
The Tucson clinic is the newest of seven such offices opened in North
America in the last six years - six in the United States, and the founding
clinic in Canada. All are run by doctors. Most charge $50 to $60 per hour.
Collectively, the AMRI clinics have treated some 1,300 patients - including
about 35 in Tucson - for all kinds of conditions, and are reporting 75
percent showed "some degree of improvement," 12 percent had "minimal
improvement," and 13 percent showed "no change."
However, in February, the FDA sent a warning letter to the AMRI clinic in
Hanover, Pa., about "objectionable conditions" and "serious violations"
found in an FDA inspection.
Specifically, investigators cited the clinic for failing to present
alternative treatments to patients, and any risks in therapy. The clinic
also failed to perform patient medical tests required before therapy, and
found several patients who were never seen by a physician, as required.
If such deficiencies, and the lack of scientific trial, eventually doom FDA
approval of AMRI therapy, McCready said that will not affect the demand for
it, noting some clinics are booked more than a year in advance.
Despite its popularity, local doctors are highly skeptical.
Just the gamut of disorders the clinic claims to assist makes "you lose
trust," said Dr. Kutaiba Tabbaa, director of the University of Arizona Pain
Clinic.
"This must be Jesus inside that machine," he said.
Even doctors who embrace alternative treatments along with mainstream
medicine remain wary. McCready approached Dr. Andrew Weil, internationally
known founder of the integrative medicine movement, based at UA, to
consider referring patients to AMRI. He declined.
"We are familiar with what is called pulsed electromagnetic field therapy,
and we've seen only marginal results with it," said Dr. Brian Becker, head
of science and ethics at Weil's integrative medicine program.
"They say it's safe and non- invasive, but no one knows what physical
effects might result from hundreds of hours of exposure to this energy.
We'll know in 20 years. To be completely safe, something has to be
completely inert, and this is not."
But such concerns did not discourage Tucsonan David Reilly, 61, from trying
the clinic last week, a day after he heard of it.
For six years, he's struggled with a deteriorating and severely painful
knee joint, requiring narcotics to control the pain. Two years ago, he was
told he needed a total knee replacement - an option he rejected.
But after his first four hours under the AMRI electromagnet Wednesday -
which involves simply lying on a bed, watching TV, reading or sleeping - he
called the treatment "100 percent successful."
"By morning, I was so excited, I rode my bicycle, I climbed a ladder -
these are things I couldn't do without a great deal of difficulty," Reilly
said. "The swelling is way down; the mobility is way up. I know I'm going
to be able to forgo the narcotics now, and that's exciting."
Reilly can afford to continue therapy for at least 200 hours, at which
point he expects the damaged cartilage will be repaired.
"All I can say is people who close their eyes to this, who pooh-pooh it,
well, that's unfortunate," he said.
If Reilly completes his 200 hours, he's looking at a $9,000 bill. McCready
does not apologize. He said it cost $500,000 to open the clinic, which has
four magnetic molecular energizers, costing $100,000 each.
"What is the money if you can significantly improve nerve damage from
diabetes, or disability from cerebral palsy or Parkinson's? Or if you can
avoid a complication from surgery?" he asked. "Money is not a deterrent to
a lot of people who have these problems."
? Contact reporter Carla McClain at 806-7754 or at [log in to unmask]
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=========================================================================
Date: Tue, 10 May 2005 22:13:58 -0400
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: Fw: Suthers et.al. vs. AMGEN
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As you might know biotech giant Amgen abruptly halted their trial of GdNF
last September and has refused to continue treatment for the 48 trial
participants -advanced PD patients, many of whom were greatly helped by
the GDNF infusions. Since the trial halt - they have all regressed, their
symptoms have worsened and they are suffering.
Two of the participants are suing Amgen to reinstate their treatments.
For more about this issue see the Parkinson Pipeline Project web site
www.pdpipeline.org (and while you're there - also see the "Trial
Participants' Bill of Rights")
and the Grassroots Connection
http://www.grassrootsconnection.com/grcissue_GDNF_research.htm
A copy of the legal documents are at:
www.gdnf4parkinsons.org
This case is really important to all PWP - not just the 48 individuals,
although we greatly sympathize with them. The outcome affects all of us,
particularly those who might participate in future clinical trials and
would hope to be treated with respect and concern for our well being.
A preliminary hearing on Suthers et al. v. Amgen is scheduled for
Thursday May 26th in NYC.
The hearing will be at 10 am at the Daniel Patrick Moynihan Courthouse
at 500 Pearl Street in lower Manhattan.
It is hoped that PWP and their families will pack the courtroom in a
massive show of support for these patients. Please spread the word among
your NYC area support groups
If you live in or near NYC, please try to be there.
Letters of support are also needed. more details on these to follow.
Linda
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=========================================================================
Date: Tue, 10 May 2005 10:59:25 -0700
Reply-To: Parkinson's Information Exchange Network
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Sender: Parkinson's Information Exchange Network
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From: rayilynlee <[log in to unmask]>
Subject: no stem cell research for us
Comments: cc: [log in to unmask], Tonetta Toulouse <[log in to unmask]>,
Patsy Brown <[log in to unmask]>, Ira Roy <[log in to unmask]>,
Greta <[log in to unmask]>, tess owens <[log in to unmask]>,
Marilyn Bennett <[log in to unmask]>,
Dara Hunt <[log in to unmask]>, Larry Thompson <[log in to unmask]>,
Bernard Farber <[log in to unmask]>, "M.Schild" <[log in to unmask]>
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Religion/World View=20
--------------------------------------------------------------------
The Crusaders
By BOB MOSER
May 9, 2005, 22:33
Email this article
Printer friendly page
=20
Christian evangelicals are plotting to remake America in =
their own image=20
It's February, and 900 of America's staunchest Christian =
fundamentalists have gathered in Fort Lauderdale to look back on what =
they accomplished in last year's election -- and to plan what's next. As =
they assemble in the vast sanctuary of Coral Ridge Presbyterian, with =
all fifty state flags dangling from the rafters, three stadium-size =
video screens flash the name of the conference: RECLAIMING AMERICA FOR =
CHRIST. These are the evangelical activists behind the nation's most =
effective political machine -- one that brought more than 4 million new =
Christian voters to the polls last November, sending George W. Bush back =
to the White House and thirty-two new pro-lifers to Congress. But =
despite their unprecedented power, fundamentalists still see themselves =
as a persecuted minority, waging a holy war against the godless forces =
of secularism. To rouse themselves, they kick off the festivities with =
"Soldiers of the Cross, Arise," the bloodthirstiest tune in all of =
Christendom: "Seize your armor, gird it on/Now the battle will be =
won/Soon, your enemies all slain/Crowns of glory you shall gain."=20
Meet the Dominionists -- biblical literalists who believe =
God has called them to take over the U.S. government. As the far-right =
wing of the evangelical movement, Dominionists are pressing an agenda =
that makes Newt Gingrich's Contract With America look like the Communist =
Manifesto. They want to rewrite schoolbooks to reflect a Christian =
version of American history, pack the nation's courts with judges who =
follow Old Testament law, post the Ten Commandments in every courthouse =
and make it a felony for gay men to have sex and women to have =
abortions. In Florida, when the courts ordered Terri Schiavo's feeding =
tube removed, it was the Dominionists who organized round-the-clock =
protests and issued a fiery call for Gov. Jeb Bush to defy the law and =
take Schiavo into state custody. Their ultimate goal is to plant the =
seeds of a "faith-based" government that will endure far longer than =
Bush's presidency -- all the way until Jesus comes back.
"Most people hear them talk about a 'Christian nation' and =
think, 'Well, that sounds like a good, moral thing,' says the Rev. Mel =
White, who ghostwrote Jerry Falwell's autobiography before breaking with =
the evangelical movement. "What they don't know -- what even most =
conservative Christians who voted for Bush don't know -- is that =
'Christian nation' means something else entirely to these Dominionist =
leaders. This movement is no more about following the example of Christ =
than Bush's Clean Water Act is about clean water."
The godfather of the Dominionists is D. James Kennedy, the =
most influential evangelical you've never heard of. A former Arthur =
Murray dance instructor, he launched his Florida ministry in 1959, when =
most evangelicals still followed Billy Graham's gospel of nonpartisan =
soul-saving. Kennedy built Coral Ridge Ministries into a =
$37-million-a-year empire, with a TV-and-radio audience of 3 million, by =
preaching that it was time to save America -- not soul by soul but =
election by election. After helping found the Moral Majority in 1979, =
Kennedy became a five-star general in the Christian army. Bush sought =
his blessing before running for president -- and continues to consult =
top Dominionists on matters of federal policy.
"Our job is to reclaim America for Christ, whatever the =
cost," Kennedy says. "As the vice regents of God, we are to exercise =
godly dominion and influence over our neighborhoods, our schools, our =
government, our literature and arts, our sports arenas, our =
entertainment media, our news media, our scientific endeavors -- in =
short, over every aspect and institution of human society."
At Reclaiming America, most of the conference is taken up by =
grassroots training sessions that supply ministers, retirees and devout =
churchgoers with "The Facts of Stem-Cell Research" or "Practical Steps =
to Impact Your Community with America's Historical Judeo-Christian =
Heritage." "We're going to turn you into an army of one," Gary Cass, =
executive director of Reclaiming America, promises activists at one =
workshop held in Evangalism Explosion Hall. The Dominionists also attend =
speeches by supporters like Rep. Katherine Harris of Florida, who urges =
them to "win back America for God." In their spare time, =
conference-goers buy books about a God-devised health program called the =
Maker's Diet or meet with a financial adviser who offers a "biblically =
sound investment plan."
To implement their sweeping agenda, the Dominionists are =
working to remake the federal courts in God's image. In their view, the =
Founding Fathers never intended to erect a barrier between politics and =
religion. "The First Amendment does not say there should be a separation =
of church and state," declares Alan Sears, president and CEO of the =
Alliance Defense Fund, a team of 750 attorneys trained by the =
Dominionists to fight abortion and gay marriage. Sears argues that the =
constitutional guarantee against state-sponsored religion is actually =
designed to "shield" the church from federal interference -- allowing =
Christians to take their rightful place at the head of the government. =
"We have a right, indeed an obligation, to govern," says David Limbaugh, =
brother of Rush and author of Persecution: How Liberals Are Waging War =
Against Christianity. Nothing gets the Dominionists to their feet faster =
than ringing condemnations of judicial tyranny. "Activist judges have =
systematically deconstructed the Constitution," roars Rick Scarborough, =
author of Mixing Church and State. "A God-free society is their goal!"
Activist judges, of course, are precisely what the =
Dominionists want. Their model is Roy Moore, the former Alabama chief =
justice who installed a 5,300-pound granite memorial to the Ten =
Commandments, complete with an open Bible carved in its top, in the =
state judicial building. At Reclaiming America, Roy's Rock sits out =
front, fresh off a tour of twenty-one states, perched on the =
flag-festooned flatbed of a diesel truck, a potent symbol of the =
"faith-based" justice the Dominionists are bent on imposing. Activists =
at the conference pose for photographs beside the rock and have =
circulated a petition urging President Bush to appoint Moore -- who once =
penned an opinion calling for the state to execute "practicing =
homosexuals" -- to the U.S. Supreme Court.
"The other side knows we've got strongholds in the executive =
and legislative branches," Cass tells the troops. "If we start winning =
the judiciary, their power base is going to be eroded."
To pack the courts with fundamentalists like Moore, =
Dominionist leaders are planning a massive media blitz. They're also =
pressuring Senate Majority Leader Bill Frist -- an ally who's courting =
support for his presidential bid -- to halt the long-standing use of =
filibusters to hold up judicial nominations. An anti-filibuster petition =
circulating at the conference blasts Democrats for their "outrageous =
stonewalling of appointments" -- even though Congress has approved more =
nominees of Bush than of any president since Jimmy Carter.
It helps that Dominionists have a direct line to the White =
House: The Rev. Richard Land, top lobbyist for the 16-million-member =
Southern Baptist Convention, enjoys a weekly conference call with top =
Bush advisers including Karl Rove. "We've got the Holy Spirit's wind at =
our backs!" Land declares in an arm-waving, red-faced speech. He takes =
particular aim at the threat posed by John Lennon, denouncing "Imagine" =
as a "secular anthem" that envisions a future of "clone plantations, =
child sacrifice, legalized polygamy and hard-core porn."
The Dominionists are also stepping up efforts to turn public =
schools into forums for evangelism. In a landmark case, the Alliance =
Defense Fund is suing a California school district that threatened to =
dismiss a born-again teacher who was evangelizing fifth-graders. In the =
conference's opening ceremony, the Dominionists recite an oath they =
dream of hearing in every classroom: "I pledge allegiance to the =
Christian flag, and to the Savior for whose kingdom it stands. One =
Savior, crucified, risen and coming again, with life and liberty for all =
who believe."
Cass urges conference-goers to stack school boards with =
Dominionists. "The most humble Christian is more qualified for office =
than the best-educated pagan," says Cass, an anti-abortion activist who =
led a takeover of his school district's board in San Diego. "We built =
quite a little grass-roots machine out there. Now it's my burden to =
multiply that success all across America."
Cass points to the Rev. Gary Beeler, a Baptist minister from =
Tennessee who got permission for thousands of students to skip class and =
attend weeklong events that he calls "old-time revivals, with preaching =
and singing and soul-saving and the whole nine yards." Now, with support =
from Kennedy, Beeler is selling his house and buying a mobile home to =
spread his crusade nationwide. "It's not exactly what I planned to do =
with my retirement," he says. "But it's what God told me to do."
Cass also presents another small-town activist, Kevin McCoy, =
with a Salt and Light Award for leading a successful campaign to shut =
down an anti-bullying program in West Virginia schools. McCoy, a =
soft-spoken, prematurely gray postal worker, fought to end the program =
because it taught tolerance for gay people -- and thus, in his view, =
constituted a "thinly disguised effort to promote the homosexual =
agenda." "What America needs," Cass tells the faithful, "is more Kevin =
McCoys."
While the dominionists rely on grass-roots activists to =
fight their battles, they are backed by some of America's richest =
entrepreneurs. Amway founder Rich DeVos, a Kennedy ally who's the =
leading Republican contender for governor of Michigan, has tossed more =
than $5 million into the collection plate. Jean Case, wife of former AOL =
chief Steve Case -- whose fortune was made largely on sex-chat rooms -- =
has donated $8 million. And Tom Monaghan, founder of Domino's Pizza, is =
a major source of cash for Focus on the Family, a megaministry working =
with Kennedy to eliminate all public schools.
The one-two punch of militant activists and big money has =
helped make the Dominionists a force in Washington, where a growing =
number of congressmen owe their elections to the machine. Kennedy has =
also created the Center for Christian Statesmanship, which trains =
elected officials to "more effectively share their faith in the public =
arena." Speaking to the group, House Majority Whip Tom DeLay -- a winner =
of Kennedy's Distinguished Christian Statesman Award -- called Bush's =
faith-based initiatives "a great opportunity to bring God back into the =
public institutions of our country."
The most vivid proof of the Christianizing of Capitol Hill =
comes at the final session of Reclaiming America. Rep. Walter Jones, a =
lanky congressman from North Carolina, gives a fire-and-brimstone speech =
that would have gotten him laughed out of Washington thirty years ago. =
In today's climate, however, he's got a chance of passing his pet =
project, the Houses of Worship Free Speech Restoration Act, which would =
permit ministers to endorse political candidates from their pulpits, =
effectively converting their tax-exempt churches into Republican =
campaign headquarters.
"America is under assault!" Jones thunders as his aides dash =
around the sanctuary snapping PR photos. "Everyone in America has the =
right to speak freely, except for those standing in the pulpits of our =
churches!" The amen chorus reaches a fever pitch. Hands fly heavenward. =
It's one thing to hear such words from Dominionist leaders -- but to =
this crowd, there's nothing more thrilling than getting the gospel from =
a U.S. congressman. "You cannot have a strong nation that does not =
follow God," Jones preaches, working up to a climactic, passionate plea =
for a biblical republic. "God, please -- God, please -- God, please -- =
save America!"
=
http://www.rollingstone.com/politics/story/_/id/7235393?pageid=3Drs.Polit=
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Date: Tue, 10 May 2005 09:51:06 -0400
Reply-To: Rick McGirr <[log in to unmask]>
Sender: Parkinson's Information Exchange Network
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From: Rick McGirr <[log in to unmask]>
Subject: recommended reading/marijuana
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I'm currently reading Understanding Marijuana: A New Look At The
Scientific Evidence, by Mitch Earleywine. (Pub by Oxford Univesity
Press, 2002). It's available from the Scientific American (magazine)
book club. (www.sciambookclub.com)
I'm only on chapter 4, but I jumped ahead to the "Medical Marijuana"
chapter. It concludes that there is little evidence of marijuana's
efficacy in treating PD, but it goes on to list several symptoms
commonly reported by PWP, such as anxiety, dystonia, insomnia, and
pain, on which marijuana seems to have an effect.
Let me add my personal experience. (Many of you are now thinking,
"Aha! I knew it!") When my neck, shoulder, and abdominal muscles feel
like ship's ropes (made from hemp fibers, of course), a little
marijuana helps relax them. I have also personally observed moderate
reduction in my tremors after smoking a few puffs of marijuana.
Emotionally, marijuana makes me feel like everything is just fine. It
has helped me get through some tough stretches, when I was feeling
anxious or depressed.
Since pot is illegal, quality and strength varies greatly, unless you
can get it from a co-op or something. I do get mine on the black
market, but I try to stay local and fresh, as with any produce. This
avoids nasty issues like pesticides, mafia involvement, and our
wonderful drug-war policies.
All disclaimers apply. Results may vary. Ask your doctors. I did.
They have not raised any objection to my judicious, symptom-related
use of marijuana. But you must be very careful, especially if you're
not knowledgeable or experienced in how marijuana affects you. And
remember to be vigilant for signs of abuse or dependence.
Enjoy Spring!
Rick McGirr
Email: [log in to unmask]
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Date: Tue, 10 May 2005 15:53:18 -0400
Reply-To: Parkinson's Information Exchange Network
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From: KF Etzold <[log in to unmask]>
Subject: Re: Age for DBS
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Rayilyn said:
"I was told that 70 was the optimum age, although it does depend upon the
person and whether you have dementia or not. I had my DBSs when I was 67,
2
years ago. Ray
"
It is my understanding that 70 or there about is the maximum age not the
optimumm one. So don't wait if you think you are eligible.
K. F. Etzold
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Date: Tue, 10 May 2005 21:28:28 -0400
Reply-To: Parkinson's Information Exchange Network
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From: Linda J Herman <[log in to unmask]>
Subject: New Poll - Majority of Republican voters approve of embryonic
stem cell research
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FROM: The Associated Press
May 10, 2005, Tuesday
Washington Dateline
HEADLINE: Poll of Republican voters shows approval of embryonic stem cell
research
BYLINE: By DAVID ESPO, AP Special Correspondent
" Polling, advertising and grass-roots organizing, the pillars of a
strong
election campaign, now spill over routinely to congressional battles -
embryonic
stem cell research among them.
The embryonic stem cell issue flared during the 2004 presidential
campaign
and may soon come before the House. Republicans who dissent from
President Bush
's policy are circulating a poll designed to show they have the party's
voters
on their side even if many fellow GOP lawmakers are not.
The survey, taken among 800 Republican voters nationwide, showed 90
percent
job approval for President Bush and 88 percent favorable support for
Republicans
in the House. Both levels far exceed recent results of surveys taken of
voters
of all political persuasions.
At the same time, 57 percent of those surveyed in the Republican-only
poll
said they favored embryonic stem cell research, with 40 percent opposed.
On a
follow-up question, 54 percent said it was more of a research issue,
while 40
percent said it was more of an abortion issue.
"Anytime you see a poll like that, that's a strong preference," said
Rep.
Mike Castle, R-Del., the leading supporter of stem cell research.
"Members of
Congress understand polls. I think the other thing that's important is
who takes
polls."
In this case, the pollster was David Winston, who also does survey
work for
GOP leadership organizations in both the House and Senate.
Embryonic stem cell research has been a controversial issue for
several
years. Supporters say it holds the potential to find treatment or even
cures for
a variety of diseases. But abortion opponents argue it involves the
taking of a
nascent human life.
Bush's policy declaration more than three years ago did little or
nothing to
halt the debate. Several months after taking office, he announced that
stem cell
lines in existence as of Aug. 9, 2001, would be eligible for federal
research
funds.
Castle's legislation would allow federal funding for research on
embryonic
stem cell lines created after Aug. 9, 2001, but only if they were
developed
using the same ethical guidelines that Bush laid down.
Castle said the legislation he favors has the support of 198 members
of the
House, including some abortion opponents. At the same time, he said,
there is no
indication yet that the White House is inclined to drop its opposition.
Sen. John Kerry of Massachusetts, Bush's 2004 opponent, turned the
issue into
one of the minor themes of his campaign for the White House, frequently
accusing
Bush of choosing ideology over science. Public polls at the time showed
strong
support for expanded research.
-----
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Date: Tue, 10 May 2005 19:15:43 -0400
Reply-To: Parkinson's Information Exchange Network
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From: Hilary Blue <[log in to unmask]>
Subject: Re: Reheating Vegetable Oil Releases Toxin Linked to Parkinson's
Comments: To: Miranda Hay <[log in to unmask]>
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This is scary news!!!!1
We would eat fried foods (chops, steaks and fish) about three or four
times a week , not to mention fried potatoes and fried onions, and
always -- in the interests of household economy, reuse the oil three or
four times. My mother died of colon cancer and i have PD - hard not to
induce a connexion!!
hilary blue.
John Cottingham wrote:
> The source of this article is RedNova News: http://tinyurl.com/dmoj2
>
> Reheating Vegetable Oil Releases Toxin Linked to Parkinson's
>
>
> Credit: Punchstock Research implicates cooking oils used in homes and
> restaurants
>
> HealthDay News -- High amounts of a toxin with known connections to heart
> disease and neurological disorders accumulate in vegetable-based cooking
> oils that are heated or reheated for hours at a time, new research shows.
>
> The fatty acid-derived toxin, called 4-hydroxy-trans-2-nonenal (HNE),
> forms
> in especially high amounts in polyunsaturated oils that have linoleic
> acid,
> which include canola, corn, soybean and sunflower, researchers say. The
> compound does not arise in saturated oils sourced from animal fat.
>
> "There's a tremendous literature in biochemistry on HNE, a library of
> studies going back 20 years. It's a very toxic compound," said lead
> researcher A. Saari Csallany, a professor of food chemistry and
> nutritional
> biochemistry at the University of Minnesota.
>
> Based on the findings, American Dietetic Association spokeswoman Jeannie
> Moloo said that "if a person is concerned about the health aspects of
> HNE,
> then my recommendations would be to never heat any oil to the point of
> smoking and, as far as cooking at home goes, just use the oil one
> time. And
> avoid eating fried foods in restaurants."
>
> Donna Garren, a regulatory affairs executive with the National Restaurant
> Association, which represents more than 358,000 of the nation's eating
> establishments, said there are no industry-wide rules currently in place
> governing the choice and maintenance of cooking oils.
>
> But, she added, "if there is a risk, we'd be concerned about that and
> want
> to work with the appropriate federal agency to look at a thorough risk
> assessment."
>
> The findings were presented this week at the American Oil Chemists
> Society
> annual meeting, in Salt Lake City.
>
> According to Csallany, who conducted the research with graduate student
> Christine Seppanen, HNE has a long pedigree as a health threat to humans.
> Numerous studies have linked HNE consumption to increased risks for
> cardiovascular disease, stroke, Parkinson's, Alzheimer's, Huntington's
> disease, liver ailments and even cancer, she said.
>
> Vegetable-based monounsaturated and polyunsaturated fats are inherently
> unstable, especially at high temperatures, Csallany said. And "HNE arises
> from linoleic acid [contained in these oils]. For example, soybean oil is
> about 54 percent linoleic, canola a bit lower, corn oil a little higher,
> maybe 60 percent, and sunflower oil is even higher than that," she added.
>
>
> "HNE's toxicity is that it reacts very energetically with biomolecules"
> once it is absorbed into the body via food, Csallany said. "It reacts
> with
> the various kinds of amino groups -- proteins, DNA, RNA, affecting basic
> cellular processes," she added.
>
> In their previous work, Csallany and Seppanen discovered that HNE
> tends to
> form in vegetable oils at high temperatures, accumulating steadily over a
> period of up to 6.5 hours, after which point it begins to decompose.
>
> A study they published last year in the Journal of the American Oil
> Chemists' Society also found that the level of absorbed HNE in French
> fries
> was equal to HNE concentrations in the oil the fries were cooked in,
> she said.
>
> "Our next question was, 'So, what happens if somebody at home is using
> oil
> for an hour, then lets it stand overnight for two or three days? Does it
> decompose by itself? Or if it's reheated does the accumulation start
> adding
> up again?'" Csallany said.
>
> Their latest experiment found that "intermittent heating is just as
> bad as
> continuous heating," Csallany said.
>
> Based on the findings, she recommends that people avoid foods fried in
> polyunsaturated vegetable oils.
>
> "It's not so bad if you eat these foods once or twice in a while, but if
> you are continuously eating them, and the oils are neglected, kept aside,
> that's not so healthy," she said.
>
> And what about fast-food restaurants, where deep fryers are kept hot and
> active most of the day?
>
> "Smaller operations tend to use soybean oil or some other vegetable oil,"
> Csallany said. "At the chains -- although we haven't tested there -- they
> generally use hydrogenated soybean oil. Hydrogenation doesn't get rid of
> the linoleic acid, but it could make it a little less. However, it's
> still
> there in high concentrations."
>
> Moloo agreed that the real concern is restaurant fare. "I'm not so
> worried
> about the home cook using a vegetable oil -- using a corn or soybean
> oil to
> stir-fry vegetables, for example -- because most of the time it's a
> short,
> one-time use," she said. "I'm more concerned about fried foods in
> restaurants, where the oil may be used over and over."
>
> Garren said, "It's the option of the [restaurant] operator as to what
> combination of oils they use -- they might want to use a combination of
> animal (protein-based) and vegetable oils, depending on palatability."
>
> As to changing the oil, she added, "There is mention of maintenance of
> oils
> in the [U.S. Food and Drug Administration's] Food Code, and it leaves
> it to
> the discretion of the operator, based on the cleanliness of the oils."
>
> She noted, however, that too-frequent changing of cooking oils can bring
> its own problems.
>
> "You have to make sure that you aren't wasting oils that are perfectly
> good
> to use, because then you have disposal issues. We want to make sure we're
> not creating another problem by arbitrarily dumping oil," she said.
>
> But Moloo says dumping vegetable-based cooking oil after use may be a
> good
> idea, at least in residential kitchens.
>
> "If you deep-fry foods at home, throw out the oil after cooking rather
> than
> saving it," she said. "And if HNE is a concern for you, then one of the
> ways to eliminate it from your diet is simply not to eat these fried
> foods."
>
> She also noted that not all vegetable oils are created equal.
>
> "Oils that are high in saturated fats and monounsaturated fats are the
> most
> stable when heated -- from a vegetable oil standpoint, those would
> include
> peanut and olive oil," the nutritionist said.
>
> Other polyunsaturated oils such as soybean, corn, canola or sunflower
> "might better be used at room temperature, such as in salad
> dressings," she
> added.
>
> For her part, Csallany said she would abandon vegetable oils as a cooking
> staple altogether.
>
> "If I was frying, I'd go back to beef tallow -- it's very high in oleic
> acid," which does not produce HNE, she said. "And there's new information
> that shows that not all [animal-based] saturated fats are the same.
> Stearic
> acid, for example, is found in saturated fat and it doesn't increase
> cholesterol and doesn't produce HNE."
>
> But Moloo is more leery of any switch back to animal oils.
>
> "Anytime we're looking at eating a lot of fat in the diet it's going to
> cause problems, whether it's toxic compounds that come out through the
> heating process, or other components of the fat, such as high cholesterol
> levels," she said.
>
> For its part, the National Restaurant Association intends to wait for
> word
> from the FDA, which has the power to issue guidances on these types of
> issues.
>
> At this point, Garren said, "it would be fairly arbitrary for us to
> make a
> decision -- obviously, we'd want to carefully monitor this and be of any
> help we can be to the FDA in moving forward with a thorough risk
> assessment."
>
> More information
>
> University of Minnesota
>
> National Restaurant Association
>
> For much more on dietary fats and oils, visit the American Dietetic
> Association.
>
>
>
> Source: By E.J. Mundell
>
> ----------------------------------------------------------------------
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Date: Wed, 11 May 2005 04:32:11 -0500
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From: John Cottingham
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Subject: Botanist researching whether toxin could cause neurological
diseases
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The source of this article is the Kansas City Star: http://tinyurl.com/9c9se
Posted on Tue, May. 10, 2005
Botanist researching whether toxin could cause neurological diseases
BY GEORGIA TASKER
Knight Ridder Newspapers
MIAMI - (KRT) - In an unusual scientific journey, an ethnobotanist is=20
tracking a toxin he believes could be a cause of Alzheimer's, Parkinson's,=
=20
Lou Gehrig's and other baffling neurological diseases.
Doing research ordinarily done by other types of scientists, Paul Alan Cox=
=20
thinks he may have made a significant discovery: that the toxin is produced=
=20
by blue-green algae, the oldest and most pervasive organism on the planet.
Cox and his nine collaborators found that 97 percent of all blue-green=20
algae, more commonly known as cyanobacteria, produce the neurotoxin,=20
according to their paper in the Proceedings of the National Academy of=20
Sciences. This "suggests a potential for widespread human exposure," they=20
wrote.
Cyanobacteria occur naturally in oceans, lakes and estuaries. The Red Sea=20
is named for a reddish cyanobacteria. When conditions are right, the=20
cyanobacteria explode into blooms, concentrating the toxins they give off.
Much more investigation remains before anyone can say definitively the=20
cyanobacteria cause neurological disease and, if they do, how the bacteria=
=20
get from the algae into human brains.
No one knows exactly what causes neurodegenerative diseases; research is=20
focused on genetics and environment.
Some scientists are skeptical of Cox's theories.
"He's run with this hypothesis when the likelihood is that nobody can=20
replicate the data," said Dr. Daniel Perl, director of neuropathology at=20
Mount Sinai Medical Center in New York. "I don't know what the hell he's=20
measuring."
But the findings excite others, including Dr. Walter Bradley, head of the=20
department of neurology at the University of Miami. The university is=20
examining brain tissues to see if they contain the toxin.
"I believe if what Paul has found turns out to be correct, he is likely to=
=20
get the Nobel Prize. It may be the answer or one of the answers to=20
neurodegeneration," Bradley said.
Deborah Mash, who heads the brain endowment bank at the University of=20
Miami, said the testing began within the last four or five months. While=20
hundreds of tests must be done, Mash said the researchers detected the=20
toxin in brains of deceased people who had Alzheimer's and ALS (amyotrophic=
=20
lateral sclerosis, also known as Lou Gehrig's disease).
"We're confident our data are real. We think they're promising and=20
supportive of what Cox is saying."
The story of Cox's research begins on the Pacific island of Guam, where an=
=20
extraordinarily high number of indigenous Chamorros suffered degenerative=20
symptoms: paralysis, impaired speech, eyes that saw straight ahead but not=
=20
up or down, weakness and dementia.
When Oliver Sacks wrote "Island of the Color Blind" (Knopf, $24) in 1996,=20
he devoted half of the book to the Guam story of neurological disorders. In=
=20
2002, Sacks co-authored a paper with Cox about the Chamorros eating bats in=
=20
which the neurotoxin had magnified 10,000-fold.
Cox entered neurology as an outsider, with a doctorate in biology from=20
Harvard University and years of research as an ethnobotanist, studying=20
plants that indigenous people use in daily life, particularly for medicine.
He began pursuing his research in the mid-1990s, when it was known only=20
that Chamorros used flour made from cycads that had small amounts of the=20
cyanobacteria in their roots and seeds, but not enough toxin to harm the=20
people.
Cox went village to village to see what else the villagers ate besides the=
=20
cycad flour. He discovered the Chamorros considered bats a delicacy. They=20
ate them with such gusto that they caused one species to go extinct and put=
=20
a second on the endangered species list, after which the neurodegenerative=
=20
diseases began to diminish in the 1950s. No Chamorros have developed the=20
symptoms since 1960.
Dried museum remains of some of the Guam bats collected in the 1950s were=20
tested and found to have prodigious amounts of the toxin, Cox said.
Cox and other scientists next analyzed the brain tissue of the islanders=20
who died of the degenerative diseases and brain tissue of 15 Canadians as a=
=20
control group. While the brain tissue of the islanders tested positive, the=
=20
surprising result was that two Canadian samples turned up with the toxin,=20
both in brains of people who died of Alzheimer's disease.
A second small study was done on Canadian brain tissue from seven=20
Alzheimer's patients and one non-Alzheimer's control. Again the toxin=20
appeared, in six of the seven Alzheimer samples.
The toxin is a non-protein amino acid, BMAA or B-N-methylamino-L-alanine,=20
identified in 1967. "There are only 20 amino acids that make up the=20
proteins in everything from daisies to elephants to people," Cox explained.=
=20
BMAA is not one of the 20 amino acids that make up proteins, but it has=20
been discovered both as a free amino acid in the body and bound to proteins.
"If a protein is a pearl necklace, and amino acids are individual pearls,=20
BMAA gets stuck in there as a square pearl," Cox said.
Cox hypothesizes that BMAA enters the food chain, eventually accumulating=20
in proteins, then is gradually released as proteins are metabolized. Some=20
BMAA ends up in the brain, free to damage the neurons.
"This is certainly very interesting science, and we are keeping our eye on=
=20
it," said Niles Frantz, at the Alzheimer's Association in Chicago. "At the=
=20
same time, it is very preliminary research, and the connection to=20
Alzheimer's disease has not been proven."
Perl, who was the neuropathologist for scientists preceding Cox in the Guam=
=20
work, has a brain bank of Chamorro samples. "I've been working on this for=
=20
25 years, and I'd love to find the answer," he said, noting there could be=
=20
"a number of things he could be seeing."
John Hardy, chief of the laboratory of neurogenetics for the National=20
Institutes of Health in Bethesda, Md., also is skeptical. "There is no=20
trail of evidence to say BMAA can cause tangle diseases. It's just an idea,=
=20
in my view."
The Institute for Ethnomedicine, affiliated with the National Tropical=20
Botanical Garden, has funded Cox's research. He is on leave as director of=
=20
the National Tropical Botanical Garden. He previewed his latest findings at=
=20
The Kampong in Coconut Grove, Fla., in January.
"We're afraid all people could be exposed to low levels of BMAA," he said.=
=20
"What once was believed to occur only on Guam might be more widespread."
---
=A9 2005, The Miami Herald.
Visit The Miami Herald Web edition on the World Wide Web at=20
http://www.herald.com
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Date: Wed, 11 May 2005 04:33:36 -0500
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Subject: U.S. warns of injuries from implanted stimulators
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The source of this article is Reuters: http://tinyurl.com/byx8k
U.S. warns of injuries from implanted stimulators
Tue May 10, 4:47 PM ET
WASHINGTON (Reuters) - People with implanted nerve stimulators to treat
brain, spinal or other disorders may risk comas, serious injury or death if
they undergo magnetic resonance imaging scans, U.S. regulators warned on
Tuesday.
The Food and Drug Administration said it had received several reports of
serious injuries, including comas and permanent neurological impairment, in
patients with the stimulators who underwent MRIs.
The reports involved patients with deep-brain or vagus nerve stimulators,
but similar injuries could occur with any type of implanted neurological
stimulator, the FDA said in an advisory posted on the agency's Web
site. Deep brain stimulators are used as therapy for Parkinson's
disease, and vagus nerve stimulators treat epilepsy.
The problems likely occur because electrodes attached to wires can be
heated and damage nearby tissue, the FDA said.
MRI scans are used to diagnose a variety of health problems.
Patients with implanted stimulators should consult their physician before
having an MRI to find out if the test can be performed safely, the FDA
said. In some cases, other imaging options will need to be used.
Radiologists should make sure patients are screened for implanted devices,
including ones that have been turned off or removed. Some wires stay in the
body after device removal, and they could become heated, the FDA said.
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Date: Wed, 11 May 2005 04:34:54 -0500
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From: John Cottingham
<[log in to unmask]>
Subject: Research shows optimists are blessed with better health
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The source of this article is the Seattle Times: http://tinyurl.com/b6xov
Wednesday, May 11, 2005 - Page updated at 12:00 a.m.
Research shows optimists are blessed with better health
By Julia Sommerfeld
Seattle Times staff reporter
MARK NOWLIN / THE SEATTLE TIMES
Have you ever looked on the bright side? Detected a silver lining? Are your=
=20
glasses half-full or otherwise rose-colored?
Or do you take a dim view, fix on the dark clouds and brace for the worst?
There are optimists. And then there are the people who want to strangle=
them.
Which camp you fall in may have all kinds of consequences for your health =
=97=20
and that goes beyond your risk of getting throttled. Dozens of studies=20
imply a bleak outlook somehow invites bleak outcomes, some as serious as a=
=20
sluggish immune system, heart disease, even early death. New findings make=
=20
matters worse by adding a pair of dreaded neurological diseases to the=20
things a pessimist has to worry about.
Self-help books and folks who plain don't know what else to say when faced=
=20
with a friend's misfortune have pushed the so-called power of positive=20
thinking for decades.
"That's the pop psychology version of it, but there's a lot of hard science=
=20
looking at how psychological processes affect our very biology," says=20
Bonnie McGregor, a clinical psychologist and researcher at Seattle's Fred=20
Hutchinson Cancer Research Center.
A growing area of research suggests the connection between attitude and=20
health has more to do with the ravages of stress than the triumph of happy=
=20
thoughts. That means learning to cope with anxiety may be more important =97=
=20
or at least more helpful =97 than trying to look on the bright side.
The bad news
Not to be negative, but let's start with the bad news.
The most recent entry in the why-are-they-doing-this-to-me category of=20
scientific research is the finding that pessimists are more likely to=20
develop dementia than their blithe counterparts. A sister study found they=
=20
also have a higher risk of Parkinson's disease.
"Psychologists love to blame pessimism for health problems, but I never=20
really believed it until now," says Dr. Walter Rocca, a professor of=20
neurology at the Mayo Clinic College of Medicine in Rochester, Minn., and a=
=20
researcher on both studies.
Rocca and his colleagues followed thousands of Minnesotans who took a=20
personality test in the 1960s. Those who scored highest on pessimism were=20
about 30 percent more likely to show dementia up to four decades later.=20
Another batch of Minnesotans revealed an even stronger link between=20
pessimism and Parkinson's =97 a 50 percent higher chance of developing the=
=20
degenerative disorder.
Both studies were presented last month at the annual meeting of the=20
American Academy of Neurology. They don't show causality, Rocca stressed,=20
just an association. In other words: "Pessimists, this doesn't mean you are=
=20
doomed."
The studies weren't designed to answer the why question, but they still may=
=20
provide a clue. The researchers also looked back at the Minnesotans' levels=
=20
of anxiety on those personality tests and found a similar link between=20
anxiety scores and the brain diseases.
It could be that a propensity for pessimism, anxiety and these diseases=20
share a common risk factor =97 a gene or some quirk of brain chemistry.
Another possibility, Rocca says, is that a pessimistic outlook leads to=20
more anxiety, which can disrupt levels of stress-related hormones or=20
otherwise knock the body's endocrine or nervous systems out of whack. This=
=20
much is known. Then, theoretically at least, this could trigger some=20
cascade of events that damages the brain and ends in Parkinson's or=
dementia.
It's premature to start testing whether anti-anxiety drugs could prevent=20
these diseases, Rocca says. But it's not hard to imagine why a pessimist=20
might suffer more from stress than an optimist.
Worried sick
Psychologists define optimists as people who tend to expect the best;=20
pessimists, meanwhile, assume the worst is yet to come. Some combination of=
=20
childhood experience and genetics is thought to construct this frame=20
through which we see most events.
It's a spectrum, with most people falling in the middle, though Americans=20
tend slightly to the optimistic side. We were founded by idealists after=20
all; pessimists likely took one look at the boat and said: That'll never=20
make it.
That kind of attitude gives pessimists a double whammy of anxiety. First,=20
they interpret events as more stressful. McGregor, the Hutch psychologist,=
=20
describes a scene where a friend is late for a dinner date. An optimist=20
might think: Oh good, I've got a moment to catch my breath. But a pessimist=
=20
might fret: Did she forget? Was she in an accident? Does she think my time=
=20
isn't as valuable as hers?
Second, when faced with stress, pessimists often don't cope as well.
Optimists have a curious habit of seeing stresses as challenges and forging=
=20
ahead. Pessimists obsess or give up, so daily stresses build up.
There's a huge body of evidence showing that chronic stress is rough on the=
=20
body. It weakens the immune system and contributes to higher blood=20
pressure, migraines, sleep deprivation, stomach problems, even skin=
breakouts.
When you think about it this way, it's no surprise that earlier research=20
out of the Mayo Clinic found that pessimists are more likely to die=20
prematurely.
Still, there are limits to the power of positivity.
In a study last year in the journal Cancer, Australian researchers followed=
=20
179 lung-cancer patients and found optimists didn't live any longer than=20
pessimists.
McGregor argues curing cancer is a bit much to ask of optimism. "Most=20
chemotherapy can't stop advanced lung cancer, why would they expect a=20
psychological construct to have that effect?"
Telling people to think happy thoughts may not be a particularly useful way=
=20
to fight cancer, McGregor says, but reducing the anxiety from negative=20
thoughts might be.
The effects of stress on the body are so profound they may be key to=20
developing an effective immune response to a breast-cancer vaccine once one=
=20
becomes available.
A role in vaccines?
Late this summer, McGregor plans to recruit more than 200 women at risk for=
=20
breast cancer to test her theory. She'll run groups of women through a=20
10-week cognitive-behavioral stress-management program where they'll learn=
=20
coping, reframing and relaxation skills aimed at reducing stress. During=20
the study, she'll measure their levels of the stress hormone cortisol,=20
known to impact the immune system. And at the end of the therapy, they'll=20
get the hepatitis A vaccine, and then their antibody response will be=20
measured.
The question is whether reducing stress levels boosts the immune system=20
enough to make the vaccine more effective. That's an important issue for=20
the scientists at work developing an experimental breast-cancer vaccine=20
because many of the women who'd be candidates for the treatment are likely=
=20
to be under a great deal of stress.
McGregor suspects based on some of her earlier research that the therapy=20
may nudge some of the women slightly up the optimism scale. But you don't=20
have to be a born-again optimist for your body to reap the benefits of=20
reduced anxiety.
Pessimism's upside
Julie Norem, a psychology professor at Wellesley College, thinks it's a=20
disservice to try to turn pessimists into optimists.
First of all, there's nothing psychologically wrong with pessimists. In=20
fact, they've got some positive attributes. They make better comedians, for=
=20
one. They never expect to win so they're less likely to become gambling=20
addicts. And some research conducted in nursing homes even bears out the=20
observation that the more cantankerous you are, the longer you live. Or=20
maybe it just seems that way.
"It doesn't make sense to try to tune everybody to the same frequency,"=20
says Norem, author of "The Power of Negative Thinking." "Can you imagine=20
everyone being optimistic, all the time? That's depressing."
She studied how successful pessimists cope with anxiety and found there's=20
something adaptive about their approach to life. She coined the strategy=20
"defensive pessimism," which means they mentally rehearse worst-case=20
scenarios. From the outside, it may look like obsessing, but they are=20
really turning their anxiety into actions that help them avoid pitfalls.
When a pessimist finds out she has to give a public speech, for instance,=20
she may think: This is going to be a disaster. I'm going to trip on the way=
=20
to the podium, spill my note cards and someone in that group will ask a=20
question I can't answer.
A defensive pessimist makes good use of that anxiety, Norem proposes. She=20
prepares by not wearing high heels, stapling her notes together and asking=
=20
colleagues to help brainstorm questions the other team might ask.
In a series of experiments, she asked college students to perform tasks=20
including math problems or throwing darts. But she trained pessimists in=20
optimistic strategies, things like muscle relaxation and positive imagery.=
=20
She found that when she took away their fretting, they didn't do as well.=20
They weren't prepared and felt more stressed.
"If you are a pessimist, trying to think like an optimist is like wearing=20
clothes that don't fit. It's uncomfortable and makes you even more=20
anxious," she says.
More important than striving for a cheery disposition, she says, is coping=
=20
in the way that's comfortable. And for a pessimist, that may mean thinking=
=20
unhappy thoughts. Whether this could actually have health benefits is not=20
known. But that may be beside the point. Because, according to Norem,=20
"Never in the history of the world has saying to someone 'cheer up'=20
actually worked."
Julia Sommerfeld: 206-464-2708 or [log in to unmask]
Copyright =A9 2005 The Seattle Times Company
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Date: Wed, 11 May 2005 19:48:37 EDT
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Subject: Re: Ailing elderly new face of drug Many turning to pot to ease
pain
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Amen to that.
Jen
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Date: Wed, 11 May 2005 10:36:16 -0700
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From: rayilynlee <[log in to unmask]>
Subject: Re: recommended reading/marijuana
Comments: To: Rick McGirr <[log in to unmask]>
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If you live in California you know that the Bush Administration has tried to
prevent use of marijuana for medical purposes even though the state has
permitted it. God forbid some ill or dying person should feel better.
----- Original Message -----
From: "Rick McGirr" <[log in to unmask]>
To: <[log in to unmask]>
Sent: Tuesday, May 10, 2005 6:51 AM
Subject: recommended reading/marijuana
> I'm currently reading Understanding Marijuana: A New Look At The
> Scientific Evidence, by Mitch Earleywine. (Pub by Oxford Univesity
> Press, 2002). It's available from the Scientific American (magazine)
> book club. (www.sciambookclub.com)
>
> I'm only on chapter 4, but I jumped ahead to the "Medical Marijuana"
> chapter. It concludes that there is little evidence of marijuana's
> efficacy in treating PD, but it goes on to list several symptoms
> commonly reported by PWP, such as anxiety, dystonia, insomnia, and
> pain, on which marijuana seems to have an effect.
>
> Let me add my personal experience. (Many of you are now thinking,
> "Aha! I knew it!") When my neck, shoulder, and abdominal muscles feel
> like ship's ropes (made from hemp fibers, of course), a little
> marijuana helps relax them. I have also personally observed moderate
> reduction in my tremors after smoking a few puffs of marijuana.
> Emotionally, marijuana makes me feel like everything is just fine. It
> has helped me get through some tough stretches, when I was feeling
> anxious or depressed.
>
> Since pot is illegal, quality and strength varies greatly, unless you
> can get it from a co-op or something. I do get mine on the black
> market, but I try to stay local and fresh, as with any produce. This
> avoids nasty issues like pesticides, mafia involvement, and our
> wonderful drug-war policies.
>
> All disclaimers apply. Results may vary. Ask your doctors. I did.
> They have not raised any objection to my judicious, symptom-related
> use of marijuana. But you must be very careful, especially if you're
> not knowledgeable or experienced in how marijuana affects you. And
> remember to be vigilant for signs of abuse or dependence.
>
> Enjoy Spring!
> Rick McGirr
> Email: [log in to unmask]
>
> ----------------------------------------------------------------------
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Date: Wed, 11 May 2005 10:16:15 -0300
Reply-To: Parkinson's Information Exchange Network
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From: Joao Carvalho <[log in to unmask]>
Subject: Re: no stem cell research for us
In-Reply-To: <002701c5558a$06bb8e90$08e60244@your03667082de>
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Seems that many around the world want to go back to "the dark age" time
.....sad.
rayilynlee wrote:
> Religion/World View
>--------------------------------------------------------------------
>
> The Crusaders
> By BOB MOSER
> May 9, 2005, 22:33
>
> Email this article
> Printer friendly page
>
>
> Christian evangelicals are plotting to remake America in their own image
>
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Date: Thu, 12 May 2005 01:55:28 +0000
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From: Cathy James <[log in to unmask]>
Subject: pill schedule
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Hello!
Here I am asking for your help again. I need to see this from your angle so I can help my Parkison's pal. She is taking too many Sinement pills but lives alone so there is no supervision. Her children and I have tried numerous types of pill boxes but she continues to pilfer pills from other sources. That was fine until the last couple of months when she began having trouble keeping track. She used to record the time she took each pill but now she makes incomprehensible notes that even she cannot read the next day and even if they are readable she has no idea what she was thinking when she wrote them! She no longer understands what 24 hours is. She takes pills in the middle of the night which is OK but she does not remember when or if so takes another along the way. She gets so upset if we try to help yet she calls us at all hours for help! I finally talked her in to letting me go to the Neuro with her soon so that will help.
I wonder if Alzheimer's is kicking in but she is only 55. She would balk at having a home health care nurse but I can't be there 24 hours a day.
This is too long winded-sorry! I just need to know what has helped you through a similar situation. I need to hear it from your side. Maybe you have an inkling what she is thinking. And can you overmedicate with levidopa? Is that why she flails at times?
Thanks,
CJ at her wits end in Indy
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Friend has had a rather aggresive type of Parkinson's for 6 years and just turned 55.
=========================================================================
Date: Wed, 11 May 2005 10:28:50 -0700
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From: rayilynlee <[log in to unmask]>
Subject: Re: Age for DBS
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KF is right. I meant "the oldest", guess I don't know what optimum means -
best.....I do think it's the younger the better. Don't believe they prefer
to do DBS after 70. I figured I didn't want to wait any longer, but don't
take this as my pushing it on anybody. All it helped was my tremors which
is great, but think I have double vision and my voice is worse because of
it. I still can't walk with meds and my hands are like paws and I fall, but
I'm pretty sure it will help tremor.
Good luck, some people have gotten their lives back, others its a disaster.
There are risks like stroke and death. As someone else on the list said,
have it done by the best team you can find.
----- Original Message -----
From: "KF Etzold" <[log in to unmask]>
To: <[log in to unmask]>
Sent: Tuesday, May 10, 2005 12:53 PM
Subject: Re: Age for DBS
> Rayilyn said:
> "I was told that 70 was the optimum age, although it does depend upon the
> person and whether you have dementia or not. I had my DBSs when I was 67,
> 2
> years ago. Ray
> "
>
> It is my understanding that 70 or there about is the maximum age not the
> optimumm one. So don't wait if you think you are eligible.
>
> K. F. Etzold
>
>
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Date: Wed, 11 May 2005 12:27:03 -0400
Reply-To: Parkinson's Information Exchange Network
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Sender: Parkinson's Information Exchange Network
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From: Kate Gendreau <[log in to unmask]>
Subject: FW: Kenneth Olden
Comments: To: "Jaqueline C. Fuentes" <[log in to unmask]>
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These are the notes that i have in his card - sometimes they get lost
when a contact is forwarded as a vcard:
=20
New Asst: April Parker - [log in to unmask] - 919 541 3201
=20
RDU office address (for fedex):
111 Alexander Drive
RTP, NC 27709
=20
Bethesda office address & phone:
Dr. Kenneth Olden NIH/NIEHS
Building 31, Room B1C02
31 Center Dr MSC 2256
Bethesda MD 20892-2256 Phone 301-496-3511
US Air 406A0D0=20
Northwest Airlines 211 502 163=20
American Airlines Advantage PEY1550=20
Delta SkyMiles 2116373396=20
United Premier 00308202410
Amex 3713 855760 32003 01/05=20
Amtrak Guest rewards:
7006974138
Imkalu
Amtrak login:
kenolden
imkalu
11/3 wife is Sandra
9/9 his personal email is [log in to unmask], and I believe
[log in to unmask] is set up, though I am not sure he is able to
access it at this point.=20
7/6/04 asst who handles travle, Betty Mills same number as above
=20
Kim L. Minneman=20
Secretary to the Director
NIEHS
Phone 919-541-3201
Fax 919-541-2260
[log in to unmask] (not sure what whitcher below is)
E-mail [log in to unmask]
=20
(David Brown (staff assistant) 919 541 5111)
=20
=20
=20
=20
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Date: Thu, 12 May 2005 13:07:40 -0700
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From: rayilynlee <[log in to unmask]>
Subject: Re: history/Joao/delete if not interested
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Joao,
As a teacher of college level Advanced Placement History classes in high
school, I taught about the "Age of Faith" or the "Dark Ages" or the Middle
Ages, the time between classical antiquity and the Renaissance. I never
dreamed we would go back again, this time with evangelical Protestants.
The learning of the Greek and Romans was almost all lost during this time of
1000+ years or more. What was kept was done by Christian monks in
monasteries. St. Thomas Aquinas tried to reconcile Aristotle with the
teachings of the Church, kind of like the creationism/evolution thing today.
At least the Roman Catholic Church did preserve something and the Jesuits
were no slouches intellectually. These evangelicals, in my opinion, are at
the bottom of the intellectual barrel.
Although religion helps divine right kings and other individuals, there are
serious downsides to it.
Ray
----- Original Message -----
From: "Joao Carvalho" <[log in to unmask]>
To: <[log in to unmask]>
Sent: Wednesday, May 11, 2005 6:16 AM
Subject: Re: no stem cell research for us
> Seems that many around the world want to go back to "the dark age" time
> .....sad.
>
>
>
> rayilynlee wrote:
>
>> Religion/World View
>>--------------------------------------------------------------------
>>
>> The Crusaders
>> By BOB MOSER
>> May 9, 2005, 22:33
>>
>> Email this article
>> Printer friendly page
>>
>>
>> Christian evangelicals are plotting to remake America in their
>> own image
>>
>
> ----------------------------------------------------------------------
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Date: Thu, 12 May 2005 10:24:26 -0400
Reply-To: Parkinson's Information Exchange Network
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Sender: Parkinson's Information Exchange Network
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From: Kate Gendreau <[log in to unmask]>
Subject: FW: Kenneth Olden - PLEASE DISREGARD PREVIOUS EMAIL
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Hi all,
PLEASE disregard my previous email, which was sent in error. The
information contained therein is personal and confidential, and any
passwords that appear in it have been changed.=20
Thank you for your consideration,
Kate Gendreau
-----Original Message-----
From: Parkinson's Information Exchange Network
[mailto:[log in to unmask]] On Behalf Of Kate Gendreau
Sent: Wednesday, May 11, 2005 12:27 PM
To: [log in to unmask]
Subject: FW: Kenneth Olden
These are the notes that i have in his card - sometimes they get lost
when a contact is forwarded as a vcard:
=20
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Date: Thu, 12 May 2005 17:55:21 -0400
Reply-To: Parkinson's Information Exchange Network
<[log in to unmask]>
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<[log in to unmask]>
From: KF Etzold <[log in to unmask]>
Subject: Re: pill schedule
In-Reply-To: <[log in to unmask]>
MIME-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Quote:
Here I am asking for your help again. I need to see this from your angle
so I can help my Parkison's pal. She is taking too many Sinement pills but
lives alone so there is no supervision. Her children and I have tried
numerous types of pill boxes but she continues to pilfer pills from other
sources. That was fine until the last couple of months when she began
having trouble keeping track. She used to record the time she took each
pill but now she makes incomprehensible notes that even she cannot read the
next day and even if they are readable she has no idea what she was
thinking when she wrote them! She no longer understands what 24 hours is.
She takes pills in the middle of the night which is OK but she does not
remember when or if so takes another along the way. She gets so upset if
we try to help yet she calls us at all hours for help! I finally talked
her in to letting me go to the Neuro with her soon so that will help.
I wonder if Alzheimer's is kicking in but she is only 55. She would balk at
having a home health care nurse but I can't be there 24 hours a day.
Unquote.
______________________________________________________________________
You seem to have at least three things going on. The first is really just a
question of money. If you Google "Automatic Pill Dispenser" you will get
about 15000 entries. I looked at the first few and there are many different
types, and the fancier ones can get a bit pricey. If you can afford it
maybe even some of the simpler ones maybe the answer.
Two: It really does sound like dementia is setting in. *BUT*, maybe not. If
she pilfers meds she may be taking the wrong things or at the wrong dosage.
This should be checked and her total meds need to be discussed with the
neuro. The meds need to be controlled.
Three: The jerky motion you describe is probably due to overmedication as
you speculated. Again control of the meds is essential.
K. F. Etzold cg Carline
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Date: Thu, 12 May 2005 10:31:54 EDT
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From: Maxine Krugman <[log in to unmask]>
Subject: Re: FW: Kenneth Olden
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i don't understand why this information is being given out so publicly.
some, but certainly not all. what's the story with this?
maxine
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Date: Fri, 13 May 2005 00:17:19 -0400
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From: "K. F. Etzold" <[log in to unmask]>
Subject: Alert about Union Planters Bank
Comments: To: [log in to unmask]
MIME-version: 1.0
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I have received a note about Account problems at a Bank called Union
Planters, which asks among other things to click on a line called "
Update your account Account on line"
I do not have an account with such bank and the note is probably a
fraudulent attempt to obtain personal information. What got my attention
is the fact that this note showed up on my home as well as my office
computer. I have only a few ID's common to both machines: PIEN and
CARE for example . It is therefore highly likely that somebody
fraudulently harvested our addresses from one of these lists (or maybe
sparkle, forgot the address). So be alert, do not respond in any form
to this note. Do not click on anything. The TIP address when clicking
on The "Update ... etc " is different from the rest and has only a
numerical address unlike the other ones at the bottom ( 210.21.110.45) .
I just pinged this address and there was no response which can be done
by hiding behind a firewall.
This is definitely fishy.
K. F. Etzold CG Carline
----------------------------------------------------------------------
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In the body of the message put: signoff parkinsn
=========================================================================
Date: Thu, 12 May 2005 07:23:03 -0700
Reply-To: Parkinson's Information Exchange Network
<[log in to unmask]>
Sender: Parkinson's Information Exchange Network
<[log in to unmask]>
From: Scott Burnett <[log in to unmask]>
Subject: Re: pill schedule
In-Reply-To: <[log in to unmask]>
Mime-Version: 1.0 (Apple Message framework v622)
Content-Type: multipart/alternative; boundary=Apple-Mail-1-161629603
--Apple-Mail-1-161629603
Content-Transfer-Encoding: 7bit
Content-Type: text/plain;
charset=US-ASCII;
format=flowed
Kathy,
You have to be careful with levodopa. It's only good up to a certain
point and then the side effects outweigh the good points. you don't
want to rush through to that point any faster than you need to. I
have been on the same dose more less for the last 6 years. I bought
a watch from the company Cadex that has 12 alarms. That has made a
really major difference in helping me to remember to take my medication
on time. You can find them on the Web. The watch costs $50 and it's
worth every penny. Except when I forget it and the alarms going off
and driving my wife crazy. At any rate, you need to slowdown on the
levadoba to prolong its' effectiveness.
Scott Burnett
MB Multimedia
(209)478-9328
[log in to unmask]
----------------------------------------------------------------------
To sign-off Parkinsn send a message to: mailto:[log in to unmask]
In the body of the message put: signoff parkinsn
--Apple-Mail-1-161629603
Content-Transfer-Encoding: 7bit
Content-Type: text/enriched;
charset=US-ASCII
Kathy,
You have to be careful with levodopa. It's only good up to a certain
point and then the side effects outweigh the good points. you don't
want to rush through to that point any faster than you need to. I
have been on the same dose more less for the last 6 years. I bought
a watch from the company Cadex that has 12 alarms. That has made a
really major difference in helping me to remember to take my
medication on time. You can find them on the Web. The watch costs
$50 and it's worth every penny. Except when I forget it and the
alarms going off and driving my wife crazy. At any rate, you need to
slowdown on the levadoba to prolong its' effectiveness.
<italic><fontfamily><param>Lucida Handwriting</param>
Scott Burnett
MB Multimedia
(209)478-9328
[log in to unmask]
</fontfamily></italic>
--Apple-Mail-1-161629603--
=========================================================================
Date: Thu, 12 May 2005 09:47:08 -0400
Reply-To: Parkinson's Information Exchange Network
<[log in to unmask]>
Sender: Parkinson's Information Exchange Network
<[log in to unmask]>
From: Mary Ann Ryan <[log in to unmask]>
Subject: Re: pill schedule
MIME-Version: 1.0
Content-Type: text/plain; format=flowed; charset="iso-8859-1";
reply-type=original
Content-Transfer-Encoding: 7bit
CJ wrote:
> I wonder if Alzheimer's is kicking in but she is only 55. She would balk
> at having a home health care nurse but I can't be there 24 hours a day.
CJ, as anyone on this list can tell you, Sinemet can make anyone a bit
looney. In Lewy Body Disease, dementia occurs early - I don't know if
that is her problem. If she is taking too many meds and no longer has a
sense of time, then it is the responsibility of the family and her doctor to
ensure that she live in a safe environment. If that means a nurse coming
into her home to regulate medications, so be it. And if it means Assisted
Living or a 24 hour companion, then that should somehow be accomplished.
Otherwise, someone is going to find this dear woman badly hurt or dead in
her home - and the guilt suffered by the family and friends in such an
event is always terrible.
----------
God bless
Mary Ann (CG Jamie 62/25 with PD)
>
----------------------------------------------------------------------
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=========================================================================
Date: Thu, 12 May 2005 13:49:18 -0400
Reply-To: Parkinson's Information Exchange Network
<[log in to unmask]>
Sender: Parkinson's Information Exchange Network
<[log in to unmask]>
From: Rick McGirr <[log in to unmask]>
Subject: Re: recommended reading/marijuana
MIME-Version: 1.0
Content-Type: text/plain; charset="iso-8859-1"
Content-Transfer-Encoding: 7bit
One thing that is unlikely is that I would wait to get the go-ahead
for anything I do from George W. Bush.
Rick
----- Original Message -----
From: "rayilynlee" <[log in to unmask]>
To: <[log in to unmask]>
Sent: Wednesday, May 11, 2005 1:36 PM
Subject: Re: recommended reading/marijuana
> If you live in California you know that the Bush Administration has
tried to
> prevent use of marijuana for medical purposes even though the state
has
> permitted it. God forbid some ill or dying person should feel
better.
> ----- Original Message -----
> From: "Rick McGirr" <[log in to unmask]>
> To: <[log in to unmask]>
> Sent: Tuesday, May 10, 2005 6:51 AM
> Subject: recommended reading/marijuana
>
>
> > I'm currently reading Understanding Marijuana: A New Look At The
> > Scientific Evidence, by Mitch Earleywine. (Pub by Oxford Univesity
> > Press, 2002). It's available from the Scientific American
(magazine)
> > book club. (www.sciambookclub.com)
> >
> > I'm only on chapter 4, but I jumped ahead to the "Medical
Marijuana"
> > chapter. It concludes that there is little evidence of
marijuana's
> > efficacy in treating PD, but it goes on to list several symptoms
> > commonly reported by PWP, such as anxiety, dystonia, insomnia, and
> > pain, on which marijuana seems to have an effect.
> >
> > Let me add my personal experience. (Many of you are now thinking,
> > "Aha! I knew it!") When my neck, shoulder, and abdominal muscles
feel
> > like ship's ropes (made from hemp fibers, of course), a little
> > marijuana helps relax them. I have also personally observed
moderate
> > reduction in my tremors after smoking a few puffs of marijuana.
> > Emotionally, marijuana makes me feel like everything is just fine.
It
> > has helped me get through some tough stretches, when I was feeling
> > anxious or depressed.
> >
> > Since pot is illegal, quality and strength varies greatly, unless
you
> > can get it from a co-op or something. I do get mine on the black
> > market, but I try to stay local and fresh, as with any produce.
This
> > avoids nasty issues like pesticides, mafia involvement, and our
> > wonderful drug-war policies.
> >
> > All disclaimers apply. Results may vary. Ask your doctors. I
did.
> > They have not raised any objection to my judicious,
symptom-related
> > use of marijuana. But you must be very careful, especially if
you're
> > not knowledgeable or experienced in how marijuana affects you.
And
> > remember to be vigilant for signs of abuse or dependence.
> >
> > Enjoy Spring!
> > Rick McGirr
> > Email: [log in to unmask]
> >
>
> --------------------------------------------------------------------
--
> > 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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> In the body of the message put: signoff parkinsn
----------------------------------------------------------------------
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In the body of the message put: signoff parkinsn
=========================================================================
Date: Fri, 13 May 2005 04:06:48 EDT
Reply-To: Parkinson's Information Exchange Network
<[log in to unmask]>
Sender: Parkinson's Information Exchange Network
<[log in to unmask]>
From: Diane Nicolaou <[log in to unmask]>
Subject: Re: Suggestions Needed
MIME-Version: 1.0
Content-Type: text/plain; charset="US-ASCII"
Content-Transfer-Encoding: 7bit
Peggy and all,
Thanks for all the information it was very helpful and just what I needed.
Wow! what a wealth of information here - your good people to know.
Diane
----------------------------------------------------------------------
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In the body of the message put: signoff parkinsn
=========================================================================
Date: Fri, 13 May 2005 11:57:17 -0500
Reply-To: Parkinson's Information Exchange Network
<[log in to unmask]>
Sender: Parkinson's Information Exchange Network
<[log in to unmask]>
From: Charles Meyer <[log in to unmask]>
Subject: Re: Alert about Union Planters Bank
In-Reply-To: <[log in to unmask]>
MIME-Version: 1.0
Content-Type: text/plain; charset=ISO-8859-1; format=flowed
Content-Transfer-Encoding: 7bit
I received it too as well as several other similar letters from other
banks including from a bank that I DO HAVE AN ACCOUNT WITH. The problem
was that it was received at my wife's email address which the bank does
not have.
I called the bank and they said that they have been getting complaints
about this kind of email and it is not coming from them.
They will investigate it further. In the mean time they advised DO NOT
REPLY TO ANY EMAIL WHICH ASKS FOR YOUR SSN OR OTHER PERSONAL INFO.
CHARLIE
K. F. Etzold wrote:
> I have received a note about Account problems at a Bank called Union
> Planters, which asks among other things to click on a line called "
> Update your account Account on line"
> I do not have an account with such bank and the note is probably a
> fraudulent attempt to obtain personal information. What got my attention
> is the fact that this note showed up on my home as well as my office
> computer. I have only a few ID's common to both machines: PIEN and
> CARE for example . It is therefore highly likely that somebody
> fraudulently harvested our addresses from one of these lists (or maybe
> sparkle, forgot the address). So be alert, do not respond in any form
> to this note. Do not click on anything. The TIP address when clicking
> on The "Update ... etc " is different from the rest and has only a
> numerical address unlike the other ones at the bottom ( 210.21.110.45) .
> I just pinged this address and there was no response which can be done
> by hiding behind a firewall.
>
> This is definitely fishy.
>
> K. F. Etzold CG Carline
>
> ----------------------------------------------------------------------
> 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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In the body of the message put: signoff parkinsn
=========================================================================
Date: Fri, 13 May 2005 21:20:10 -0600
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: pill schedule
MIME-Version: 1.0
Content-Type: text/plain; charset="iso-8859-1"
Content-Transfer-Encoding: quoted-printable
Many cell phones can also be programmed for alarms to go off. Mine lets =
me pick a different sound for each time. Almost makes it fun to open it =
up see the dancing clock and pretend to tell someone off in the presence =
of someone who isnt " in on it". People watching is still fun. Rob
----- Original Message -----=20
From: Scott Burnett=20
To: [log in to unmask]
Sent: Thursday, May 12, 2005 8:23 AM
Subject: Re: pill schedule
Kathy,
You have to be careful with levodopa. It's only good up to a certain =
point and then the side effects outweigh the good points. you don't want =
to rush through to that point any faster than you need to. I have been =
on the same dose more less for the last 6 years. I bought a watch from =
the company Cadex that has 12 alarms. That has made a really major =
difference in helping me to remember to take my medication on time. You =
can find them on the Web. The watch costs $50 and it's worth every =
penny. Except when I forget it and the alarms going off and driving my =
wife crazy. At any rate, you need to slowdown on the levadoba to prolong =
its' effectiveness.
Scott Burnett
MB Multimedia
(209)478-9328
[log in to unmask]
----------------------------------------------------------------------
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In the body of the message put: signoff parkinsn
=========================================================================
Date: Sat, 14 May 2005 00:40:37 -0400
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: ARTICLE: Ahead of her time - Barbara Patterson
MIME-Version: 1.0
Content-Type: text/plain
Content-Transfer-Encoding: 7bit
There's a wonderful article about Barbara Patterson in the Dundas Star
News ( and a nice photo of her at the Unity Walk )
Thank you Barbara!
Ahead of her time
Barbara Patterson is the second Canadian recipient of the 11th annual
Alan Bonander Humanitarian Award
By Craig Campbell
News Staff
When Barbara Patterson was diagnosed with Parkinson's disease 13 years
ago, the affliction wasn't as well known as it is today.
The Internet also wasn't the commonly-used tool it would become. But in
an effort to find other people with Parkinson's, and information about
the disease, Ms. Patterson created an Internet based mailing list that
connected thousands of people looking for support.
"It grew quite quickly," Ms. Patterson said. "At its highest point, it
had about 3,000 members."
For her effort, and great success, Ms. Patterson is the second Canadian
recipient of the 11th annual Alan Bonander Humanitarian Award. She shares
the 2005 award, presented by the Parkinson' Unity Walk in New York City
last month, with John Cottingham of Oklahoma City.
Mr. Cottingham was one of the first to join the mailing list. He helped
her run it and later developed a separate Parkinson's website. It was her
first time attending the major American fundraising event. But she wasn't
there on her own. Ms. Patterson flew to New York City a few days early
with her son. Her daughter and her family, including two grandchildren,
flew down later. Another daughter, her sister, a cousin and a friend
drove to New York together. They all wanted to be be there for the award
presentation.
Carol Walton, executive director of the Parkinson's Unity Walk, said Ms.
Patterson worked with Alan Bonander, for whom the award is named. But the
two only communicated over the Internet, never actually meeting face to
face.
Mr. Bonander's sister presented Ms. Patterson and Mr. Cottingham with
their awards. Several other members of Mr. Bonander's family were also
there.
Ms. Walton called Ms. Patterson a pioneer in the world of Parkinson's
Disease.
"It was a disease people were embarrassed about. You wouldn't go out,"
she said. "People didn't talk about it."
Those who suffered from Parkinson's just 13-years ago, when Ms. Patterson
was diagnosed, lived in a much more isolated world, without people like
Billy Graham, Muhammad Ali and Michael J. Fox bringing more attention to
Parkinson's around the world.
"Even if there was some talk, it was hidden," Ms. Walton said. "They
didn't have access to all the tools we have today. For them, it was a lot
harder."
Ms. Patterson herself said she couldn't remember seeing the word
Parkinson's in a newspaper more than once in her life, until people like
Canadian-born actor Michael J. Fox brought it into the light.
But before these stars were on the scene, and before the Internet was as
popular as it is today, it was people like Ms. Patterson who brought
patients together, and made it possible to talk about the disease. They
brought Parkinson's out of the shadows.
"They were way before their time," Ms. Walton said.
Ms. Patterson is not only a life-long Dundas resident, but also the fifth
generation of her family in the Valley Town. Her great-great grandfather,
great-grandfather, grandfather and father all called Dundas home before
her.
Ms. Patterson recognizes the fact that charity awards often celebrate
fundraising. Her work focussed instead on people, and she appreciates the
recognition. It honors real grassroots work for all Parkinson's patients.
"The list has nothing to do with raising money, or countries, or large
Parkinson's groups," Ms. Patterson said.
http://www.dundasstarnews.com
----------------------------------------------------------------------
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=========================================================================
Date: Fri, 13 May 2005 08:12:09 -0700
Reply-To: [log in to unmask]
Sender: Parkinson's Information Exchange Network
<[log in to unmask]>
From: Mario Gonzalez <[log in to unmask]>
Subject: Re: pill schedule
MIME-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Scott, thanks for the info.
Just submitted my order.
> [Original Message]
> From: Scott Burnett <[log in to unmask]>
> To: <[log in to unmask]>
> Date: 5/12/2005 11:01:27 PM
> Subject: Re: pill schedule
>
> Kathy,
> You have to be careful with levodopa. It's only good up to a certain
> point and then the side effects outweigh the good points. you don't
> want to rush through to that point any faster than you need to. I
> have been on the same dose more less for the last 6 years. I bought
> a watch from the company Cadex that has 12 alarms. That has made a
> really major difference in helping me to remember to take my medication
> on time. You can find them on the Web. The watch costs $50 and it's
> worth every penny. Except when I forget it and the alarms going off
> and driving my wife crazy. At any rate, you need to slowdown on the
> levadoba to prolong its' effectiveness.
>
> Scott Burnett
> MB Multimedia
> (209)478-9328
> [log in to unmask]
>
>
> ----------------------------------------------------------------------
> 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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In the body of the message put: signoff parkinsn
=========================================================================
Date: Sat, 14 May 2005 00:52:10 -0400
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: CEP-1347 Clinical Trial Discontinued by Cephalon/Lundbeck
MIME-Version: 1.0
Content-Type: text/plain
Content-Transfer-Encoding: 7bit
This is bad news - CEP 1347 was hoped to be an effective neuroprotective
agent. To make matters worse, the 200 PWP who volunteered for this trial
over the last two years, received no notification or explanation from the
trial sponsors - Cephalon and Lundbeck. Nor were their doctors advised.
Trial participants found out their trial was over through Internet news
sites. They deserved better treatment than that. They deserved an
explanation and medical advice on stopping the medication.
They deserved to be treated better than lab animals.
See the Parkinson's Pipeline Project's proposed "Research Participants
Bill of Rights"
http://pdpipeline.org/rights.htm
Linda Herman
FROM: PR Newswire US
May 11, 2005 Wednesday 08:50 PM GMT
HEADLINE: Cephalon and H. Lundbeck Announce Discontinuation of CEP-1347
Clinical
Trial in Parkinson's Disease
FRAZER, Pa., May 11 /PRNewswire-FirstCall/ -- Cephalon, Inc.
(NASDAQ:CEPH)
and H. Lundbeck A/S (CSE:LUN) announced today the discontinuation of
their Phase
2/3 clinical trial of CEP-1347 in Parkinson's disease. An independent
data
monitoring committee just completed a planned review of interim results
and
concluded that the data are unlikely to provide evidence of significant
effect.
There were no safety concerns.
The study was being conducted by the Parkinson Study Group, a
non-profit,
cooperative group of Parkinson's disease experts from medical centers in
the
United States and Canada who are dedicated to improving treatment for
persons
affected by Parkinson's disease.
"While we are disappointed with results of the trial, our
collaboration with
Lundbeck will continue as a valuable part of our ongoing research program
in
neurodegenerative disorders," said Dr. Jeffry L. Vaught, Senior Vice
President
and President, Research and Development at Cephalon. "We will continue
to
actively evaluate compounds for further clinical development with
Lundbeck."
Cephalon, Inc.
Cephalon, Inc. is an international biopharmaceutical company dedicated
to the
discovery, development and marketing of innovative products to treat
sleep and
neurological disorders, cancer and pain. The company currently markets
three
proprietary products in the United States: PROVIGIL (modafinil) Tablets
[C-IV],
GABITRIL(R) (tiagabine hydrochloride) Tablets and ACTIQ(R) (oral
transmucosal
fentanyl citrate) [C-II] and more than 20 products internationally.
Further
information about Cephalon and full prescribing information on its U.S.
products
is available at http://www.cephalon.com/ or by calling 1-800-896-5855.
H. Lundbeck A/S
H. Lundbeck A/S is an international pharmaceutical company engaged in
the
research and development, production, marketing and sale of drugs for the
treatment of psychiatric and neurological disorders. The company
currently
employs approximately 5,000 people, and in 2004 its revenue was DKK 9.7
billion.
In addition to historical facts or statements of current condition,
this
press release may contain forward-looking statements. Forward-looking
statements provide Cephalon's current expectations or forecasts of future
events. These may include statements regarding anticipated scientific
progress
on its research programs, development of potential pharmaceutical
products,
interpretation of clinical results, market prospects for its products,
sales and
earnings guidance, and other statements regarding matters that are not
historical facts. You may identify some of these forward-looking
statements by
the use of words in the statements such as "anticipate," "estimate,"
"expect,"
"project," "intend," "plan," "believe" or other words and terms of
similar
meaning. Cephalon's performance and financial results could differ
materially
from those reflected in these forward-looking statements due to general
financial, economic, regulatory and political conditions affecting the
biotechnology and pharmaceutical industries as well as more specific
risks and
uncertainties facing Cephalon such as those set forth in its reports on
Form
8-K, 10-Q and 10-K filed with the U.S. Securities and Exchange
Commission.
Given these risks and uncertainties, any or all of these forward-looking
statements may prove to be incorrect. Therefore, you should not rely on
any
such factors or forward-looking statements. Furthermore, Cephalon does
not
intend to update publicly any forward-looking statement, except as
required by
law. The Private Securities Litigation Reform Act of 1995 permits this
discussion.
CONTACT: Media: Robert W. Grupp, +1-610-738-6402,
[log in to unmask] ,
or Investors: Chip Merritt, +1-610-738-6376, [log in to unmask] ,
both of
Cephalon; or Lundbeck Contacts: Steen Juul Jensen, Vice President,
+45 36 43 30 06, or Jacob Tolstrup, Investor Relations, +45 36 43 30 79,
or
Helle Hedegaard Juhl, Media Relations, +45 36 43 41 68
Web site: http://www.cephalon.com/
Company News On-Call: http://www.prnewswire.com/comp/134563.html
SOURCE Cephalon, Inc.
URL: http://www.prnewswire.com
----------------------------------------------------------------------
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=========================================================================
Date: Sat, 14 May 2005 00:56:40 -0400
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: More on Cephalon Study Halt
MIME-Version: 1.0
Content-Type: text/plain
Content-Transfer-Encoding: 7bit
FROM: BioWorld.com
Cephalon's Parkinson's Study Stopped; No Benefit Showed
May 13, 2005
By Aaron Lorenzo
Washington Editor
Cephalon Inc. called a halt to a late-stage study of a partnered
Parkinson's disease drug, CEP-1347, as interim results revealed a lack of
clinical benefit.
But the Frazer, Pa.-based company noted that the decision would not halt
its collaboration with H. Lundbeck A/S, an alliance focused on developing
drugs for neurodegenerative disorders. Nevertheless, the Phase II/III
study stoppage was a letdown.
"We were disappointed, clearly," Robert Grupp, Cephalon's vice president
of corporate affairs, told BioWorld Today. "But in this business, I
suppose, results like this should not be a surprise when you're working
with a new molecule and new endpoints."
An independent data monitoring committee recommended that the 800-patient
trial be discontinued after completing a planned review of interim
results. The evaluation came after the 200th patient received treatment
in the study, which began two years ago to test the compound in early
onset Parkinson's. Its primary endpoint was a measure of the time to
initiation of dopaminergic therapy, the standard-of-care treatment that
patients begin as their disease progresses beyond a certain point. A
secondary endpoint evaluated disease progression through SPECT imaging.
The committee concluded that final data would not likely provide evidence
of significant effect, though Grupp said specific findings have yet to be
revealed to Cephalon. There were no safety concerns.
The study was being conducted by the Parkinson Study Group, a nonprofit,
cooperative faction of Parkinson's disease practitioners in the U.S. and
Canada. The drug, an apoptosis inhibitor of receptor tyrosine kinase
(RTK), is designed to stop the death of neurons in the brain, the process
by which Parkinson's leads to lower dopamine levels and causes its
neurodegenerative effects. Grupp said CEP-1347 would have represented a
first-in-class approach to treating the disease, had it reached the
market. He added that he was unaware of other companies that had advanced
similar compounds for Parkinson's into late-stage studies.
Nevertheless, the small molecule still could have life. Cephalon owns its
rights, and while Grupp declined to say whether the company has
researched its use in other programs, he said "we haven't determined its
future."
Terms of the multiyear partnership with Lundbeck, of Copenhagen, Denmark,
called for Cephalon to market CEP-1347 in the U.S. and Lundbeck to market
it in Europe. The companies plan to continue their collaboration in other
undisclosed areas.
When the companies first reached their agreement, Cephalon received $14.4
million in up-front funding for the potential $40 million deal. CEP-1347
is the RTK inhibitor program's lead molecule. (See BioWorld Today, June
2, 1999.)
"The partnership had been going well," Grupp said, "and we'd like to see
that continue."
Beyond the setback, Cephalon recently reported positive news. Good Phase
III results on Oravescent fentanyl prompted it to announce last week that
plans are on track for filing a new drug application to the FDA next
quarter. (See BioWorld Today, May 6, 2005.)
Cephalon markets three products in the U.S.: Provigil (modafinil),
Gabitril (tiagabine hydrochloride) and Actiq (oral transmucosal fentanyl
citrate), as well as more than 20 other products internationally. On
Thursday, its shares (NASDAQ:CEPH) fell 44 cents to close at $45.13.
Published May 13, 2005
http://www.bioworld.com/servlet/com.accumedia.web.Dispatcher?next=bioWor
ldHeadlines_article&forceid=35391
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=========================================================================
Date: Sat, 14 May 2005 03:50:10 -0500
Reply-To: Parkinson's Information Exchange Network
<[log in to unmask]>
Sender: Parkinson's Information Exchange Network
<[log in to unmask]>
Comments: RFC822 error: <W> Incorrect or incomplete address field found and
ignored.
From: John Cottingham
<[log in to unmask]>
Subject: Mouse Gene Accounts For Blood Abnormalities As Well As
Parkinson's Symptoms; Search Begins For Gene's Role in Human
Illnesses
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The source of this article is NIH News: http://tinyurl.com/95h45
Mouse Gene Accounts For Blood Abnormalities As Well As Parkinson's
Symptoms; Search Begins For Gene's Role in Human Illnesses
Mice found in a previous study to develop a Parkinson's-like deterioration
when deprived of a gene for iron metabolism were also found to develop
anemia and signs of a rare skin condition, according to a follow up study
by researchers at the National Institute of Child Health and Human
Development of the National Institutes of Health.
The researchers believe that the gene may play a role in human diseases and
are now searching for people with Parkinson's disease-like symptoms and
anemia that has certain characteristics.
"This study provides additional clues that may contribute to our
understanding of neurodegenerative disorders that appear to involve iron
metabolism," said Duane Alexander, M.D., Director of the NICHD.
The study was published online in the journal Blood.
To conduct the study, the researchers developed mice lacking the gene that
makes iron regulatory protein 2 (IRP), which helps to regulate the amount
of iron in cells, explained the study's senior author, Tracey A. Rouault,
M.D., of NICHD's Section on Human Iron Metabolism. The researchers
originally reported in the February 2001 issue of Nature Genetics that mice
lacking the gene for IRP2 develop iron deposits in specific parts of the
brain and develop symptoms resembling Parkinson's disease.
In the current study, the researchers also learned that the mice developed
anemia and blood abnormalities sometimes seen in people with a rare
condition known as erythropoietic protoporphyria.
Because the genetics of both kinds of diseases are not completely
understood, Dr. Rouault and her coworkers believe that some of the people
with either Parkinson's-like symptoms or erythropoietic protoporphyria
might have an error involving the IRP2 gene.
The researchers currently are testing drugs to treat the neurological
symptoms in the IRP 2-deficient mice. If they can identify human beings
with faulty IRP 2 functioning, it is possible that these people might
participate in studies of such drug treatments.
Dr. Rouault explained that IRP 2 governs the actions of various other
proteins involved in iron metabolism. These include transferrin receptor,
which transports iron into the cell; ferritin, which stores iron safely
away from the cell's internal machinery; and iron exporters, which ferry
iron out of the cell.
The researchers developed the mice by using a method known as "knockout
technology," to permanently remove the gene. In the original study, the
researchers learned that these mice developed normally at first, and then
progressively had difficulty walking and moving. Examination of their
brains revealed tiny clumps of iron in brain areas. These mice also had
high blood levels of the iron storage protein ferritin. The researchers
think that the loss of function seen in the mice resembles the loss of
function seen in people with Parkinson's disease and Multiple System
Atrophy (also known as Parkinson's Plus).
In the current study, the researchers learned that the mice also have high
blood levels of a compound known as protoporphyrin IX. This compound is
converted into heme, the compound that allows red blood cells to carry
oxygen to the tissues. The mice also have microcytic anemia-abnormally
small red blood cells.
To conduct the next phase of their research, Dr. Rouault and her coworkers
are seeking patients who have Parkinson's-like symptoms together with
anemia. They're especially interested in hearing from people with:
Parkinson's disease,
Multiple Systems Atrophy (formerly known as Olivopontocerebellar Atrophy)
Or another neurodegenerative disease with Parkinson's-like neurological
deterioration.
With positive test results for:
High levels of protoporphyrin IX
High serum ferritin levels
And microcytic anemia (abnormally small red blood cells)
Dr. Rouault added that it's possible some people with erythropoietic
protoporphyria may have a mutation in iron regulatory protein 2. She would
be interested in hearing from people with this condition as well. People
with erythropoetic protoporphyria have skin that is abnormally sensitive to
light and may experience a severe burn from exposure to sunlight. They may
also experience irritated, itchy skin and suffer from frequent skin sores.
To contact Dr. Rouault about participating in a study, call 301-496-6368 or
send her an e-mail message at [log in to unmask]
The NICHD is part of the National Institutes of Health (NIH), the
biomedical research arm of the federal government. NIH is an agency of the
U.S. Department of Health and Human Services. The NICHD sponsors research
on development, before and after birth; maternal, child, and family health;
reproductive biology and population issues; and medical rehabilitation.
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Date: Sat, 14 May 2005 03:52:34 -0500
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From: John Cottingham
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Subject: New Study Finds No Association Between Welding and Parkinson's
Disease; First Epi-Cohort Study to Focus on Welders Confirms
Welders Not at Increased Risk of Neurodegenerative Disorders
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The source of this article is Business Wire: http://tinyurl.com/c4wrt
May 12, 2005 02:58 PM US Eastern Timezone
New Study Finds No Association Between Welding and Parkinson's Disease;
First Epi-Cohort Study to Focus on Welders Confirms Welders Not at
Increased Risk of Neurodegenerative Disorders
WASHINGTON--(BUSINESS WIRE)--May 12, 2005--The Welding Information Center
announced today that an important new epidemiological study published in
the May 2005 issue of the Journal of Occupational and Environmental
Medicine concludes that there is no link between welding or exposure to
welding fumes and an increased risk of Parkinson's disease or any other
similar neurodegenerative disorder. Entitled "A Cohort Study of Parkinson's
Disease and Other Neurodegenerative Disorders in Danish Welders," it is the
first epidemiological cohort study of Parkinson's disease and other
neurodegenerative disorders undertaken among men employed as welders.
Dr. Mark Roberts, Fellow and Board Member of the American College of
Occupational and Environmental Medicine, stated, "This is an excellent
study that provides important information about the health of welders. It
is the largest cohort study to date to look at the issue of welding and
Parkinson's disease and other parkinsonisms. It has a well-defined study
population, excellent long-term follow-up and is the only cohort study to
look at the rate of incidence of Parkinson's disease in this context. The
results of this study show that welders in this large population are not at
an increased risk of developing Parkinson's disease or other similar
movement disorders."
The cohort of 27,839 males identified as working in metals manufacturing,
were drawn from all Danish males with hospitalization and out-patient
records from the period 1977 through 2002. 9,817 of these men worked in
departments where welding occurred, and 6,163 of those in such departments
were classified as actual welders. The standardized disease-specific
hospitalization ratio (SHR) incidence of Parkinson's disease in these three
groups was then compared to the SHRs for the same diseases in the general
population. The resulting SHRs for Parkinson's disease were .9 for all
workers in metals manufacturing, 1.0 for those in welding departments, and
.9 for welders themselves. An SHR below 1.0 indicates the studied cohort
was less likely to contract the disease than the general public, an SHR of
1.0 means the risk is the same as the general public, and an SHR above 1.0
suggests an increased risk for the studied group. Similar non-association
SHRs were computed for the other neurodegenerative diseases.
The study concluded "this cohort of Danish welders with more than 20 years
of systematic follow-up had rates of PD and other neurological conditions
consistent with those of the general population of Denmark," and notes its
clinical significance by saying, "this relatively large cohort study offers
assurances that men in mild and stainless steel welding do not have
increased hospitalizations for PD or other neurodegenerative disorders."
The lead author of the study was epidemiologist Dr. Jon Fryzek of the
International Epidemiological Institute, in Rockville MD. A grant funding
this research was provided by a group of current and former manufacturers
of welding consumables.
About The Welding Information Center
The Welding Information Center is sponsored by current and former
manufacturers and distributors of welding rods. The purpose of the site is
to educate the public about the importance of welding to our society. By
gathering and providing access in one place to notable publications,
articles and other materials which detail everything from welding's
remarkable history and numerous contributions to our economy, to current
welding rod litigation and other issues, the site offers visitors a broad
overview of the key facts that form a basis for understanding welding and
its important role in all our lives. For additional information visit
http://www.weldinginfocenter.org.
Contacts
Citigate Sard Verbinnen
Brandy Bergman/Lesley Bogdanow, 212-687-8080
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Date: Sat, 14 May 2005 03:53:43 -0500
Reply-To: Parkinson's Information Exchange Network
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From: John Cottingham
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Subject: =?iso-8859-1?Q?Ex-mayor_miracle_cure_for_Parkinson=92s_?= disease
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The source of this article is Local London: http://tinyurl.com/ajuqj
Ex-mayor miracle cure for Parkinson's disease
By Siobhan Lismore
Shiraz Mirza: Tremors gone.
A former Kingston mayor claims five drops of a mystery medicine, picked out
in Pakistan using a bizarre ritual, have cured his Parkinson's disease tremors.
Chessington councillor Shiraz Mirza was diagnosed with the condition at the
end of last year and the illness, which occurs when nerve cells in the
brain die or become impaired, left him with tremors and stiffness.
But a trip back to Pakistan to visit his family and see old friends has
transformed his life after a visit to a local homeopathic doctor stopped
the tremors which had plagued him in recent months. And for the past six
weeks he has been tremor free.
At first Shiraz was sceptical about visiting the doctor.
He said: "My friend here is a homeopathic doctor. She told me so many times
to take things and I always said, No way, I'm a non-believer'."
Doctor Akmal Hussain, whose family have practised homeopathic medicine from
their Lahore home for three generations, saw Shiraz in his surgery a garage.
Shiraz said: "We waited a couple of hours, then I went in. He told me to
put my hands on the table in front of me and he looked at them."
The doctor then put some bottles filled with potions on the wooden table,
and pulled out a pendulum which he held over Shiraz's hands, which were
palm down.
The councillor said: "When I saw the pendulum I thought That's weird what
is it?' It started swinging around the bottles."
The doctor moved away any bottles the pendulum did not swirl over and
selected three.
He then put five drops of unknown medicine from one of them on the tongue
of the sceptical councillor, and when Shiraz arrived home he noticed his
tremors had stopped.
When he returned to the doctor he was told how to take the contents of all
three bottles over the next three months.
Shiraz told the Comet: "I said to him, I have never seen a miracle happen.
My tremors have stopped.' He laughed and said, I gave you medicine, that
why they stopped'."
Now Shiraz wants to start a new support club in the borough for people with
Parkinson's disease, which will have guest speakers talking about different
treatments, and advice forums.
He said there was not enough support for people with Parkinson's in
Kingston, adding: "I want to change that."
He is also hoping to convince Doctor Hussain to visit Kingston, so he can
speak to other sufferers in the area.
He said: "I would like to offer to bring him over, but we need a sponsor
really."
7:23am Friday 13th May 2005
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Date: Sat, 14 May 2005 05:35:24 EDT
Reply-To: Parkinson's Information Exchange Network
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From: Diane Nicolaou <[log in to unmask]>
Subject: alarm watch
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Hi.
I am very interested in the watch with multiple alarms. I bought a rather
expensive one (Swiss Army) that had only one alarm and that didn't do much
good to remind me to take my meds. If you have info on the watch or where I
could order it let me kknow. Thanks.
Diane
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