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Hi Jen, I'm Kathleen, dx'd nearly 13 years ago. When I first learned I had
PD I was ready to get in line for any study...then as I learned more and
talked to my neurologist, I realized that I was not yet at a stage where I
was ready to let someone mess with my brain. I've contributed blood to
studies; I've done fun things like drawing spirals. But no drilling. Not
unless and until I choose DBS.

I would never sign on for a study without carefully looking at everything
about it, not just the design of the study, but who is sponsoring it and
their history. Not everyone out there is in it for pure science untainted by
greed and not everyone treats patients ethically and with respect. I'm with
Rick: tread carefully.

Kathleen


2009/11/4 Rick McGirr <[log in to unmask]>

> Jen, a whole lot has been tried and has failed, not to mention messing
> people up in the process.  Do what you will.  Experiments on the brain are
> usually dicey.  Offering yourself for experimentation can be a brave,
> noble,
> or needy or mercenary act.  But tread carefully.
>
> Rick McGirr
>
> -----Original Message-----
> From: Parkinson's Information Exchange Network
> [mailto:[log in to unmask]] On Behalf Of Jennifer Gaudio
> Sent: Tuesday, November 03, 2009 8:00 AM
> To: [log in to unmask]
> Subject: Thanks to all
>
> Morning,
> Thanks to all for the support and welcome. I appreciate it immensely.
> I wanted to pass on that my diagnosis was made by Dr. Bahmar Jabbari, a
> motion disorder specialist at Yale Neurology Clinic. So I think I'm stuck
> with the pd diagnosis :)
> My head's in a pretty good place. I'm not angry nor to I want to waste time
> on self-pity. Not that I won't have the great-great-great grandmammy of all
> freakouts as it progresses. Mostly I am trying to live in the moment, enjoy
> my life, and do everything I can to slow the progression.
> The surgery on my legs was to repair tendons unrelated to the pd
> (peripherally). I fell down some stairs in grad school and had pathetic
> health insurance and never got them checked. Five years later I had nothing
> holding my ankles together. Oddly, it was after the first surgery that the
> pd symptoms visibly manifested. Unfortunately, two surgeries in two years
> and a year of anxiety waiting for a diagnosis puts me at a significant
> deficit in the fitness arena. My wii fit has taken to scolding me.
> I've done clinical trials for things like endometriosis, but never anything
> like pd. Has anyone out there tried it? I want to try one offered by Yale,
> but I'm worried that it may affect my behavior/job performance.
> best,Jen
> _________________________________________________________________
> Windows 7: Unclutter your desktop.
>
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