Hi Sally,
My name is Paula from Pennsylvania. I hope you will do the clinical
trials if you are physically able. We need newly diagnosed people "to blaze
the trails".
I've had PD for 11 years & have had DBS since 10/30/00.
Before my diagnosis I used to give blood at a local blood bank. That
made me feel good. Now I can't do it because I have an incurable disease.
Before my DBS I participated in two clinical trials in Philadelphia,
PA. That made me feel good. Now I can't do it anymore because of the
amount of meds I take and the progression of my disease. (By the way, I
really think I had the placebo both times, but they were blind studies so I
guess I'll never know).
My advice to you is "Do what feels right for you." If it stresses
you, don't do it. My best wishes to you whatever you decide.
Paula
----- Original Message -----
From: "Sally Lattuca at Turn of Phrase" <[log in to unmask]>
To: <[log in to unmask]>
Sent: Saturday, March 02, 2002 4:49 PM
Subject: Questions about doctors and study participation
> Hi Everybody.
> I recently joined the PIENO list (a couple of weeks ago). I'm 53, was just
> diagnosed, and have had symptoms for about 3 years. I am taking a big load
> of "supplements" at this point, but no "Parkinson's med."
>
> A friend referred me to a movement disorders specialist--Shawn Bolton,
> DO--in Farmington Hills, MI. I live in Ann Arbor, so it's a bit of a
drive.
> But after my Mom's treatment at the Movement Disorders clinic at
University
> of Michigan (here), I'm wanting to look elsewhere.
>
> I've emailed Dr. Bolton. Here's an excerpt of her response to me...
>
> <<<...some info about me! I finished my neurology training in 1996, and
> completed my movement disorder fellowship in 1998. About 80% of my
current
> practice is Parkinson's. I am also conducting several clinical drug
> trials...one of which, if I agree about the Parkinson's...you would be an
> excellent candidate for. It involves a new dopamine agonist, Sumanirole,
> not yet approved by the FDA. The study has 3 groups of patients...one
group
> will take the Sumanirole, one will receive Requip (already on the market)
> and one group (the smallest, about 20-25%) will receive placebo. The
study
> is designed for the earliest patients, even perhaps people who do not yet
> require treatment. There is a lot of info in the works about the newer
> dopamine agonists, (Mirapex, Requip, and this Sumanirole) the debate is
> whether or not they will provide neuroprotection, or help slow the
progress
> of Parkinson's. So, being such a young woman, it would be terribly
> important to explore all aspects of potential treatment, especially the
> cutting edge studies that are available to you! >>>>
>
> Dr. Bolton certainly sounds "qualified" to me and my friend really likes
> her. I particularly am impressed by her willingness to communicate with
> patients via email. So I expect to go see her--unless any of you knows of
> her and has a problem with her.
>
> But what about participating in the study??? In some ways I'm concerned
> about starting any meds before I really need to. Also, I'm terribly
> sensitive to about 1/2 the meds that are out there. And I'd be signing up
to
> get either something as yet untested on humans, or Requip (what experience
> does any of you have?)--or of course a placebo.
>
> I sure would appreciate the thoughts that any of you might be willing to
> share with me.
>
> Thanks!
>
> Sally
>
> Sally Lattuca
> Turn of Phrase
> carefully crafted communications
> When the words sing. . .the ideas dance!
>
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