 |
 |
I agree with the need to enter clinical trials with caution, and first getting as much information as you can about the experiemental treatment, the trial staff and the sponsor. Together with the Parkinson's Disease Foundation, patient/advocates from the Parkinson Pipeline Project, and PDPlan4 Life have created a checklist of questions to ask before enrolling, during the trial and after the trial that will help protect your rights and well-beiing. This check list relects PWP's actual experiences as clinical trial participants -- both positive and negative, SEE: Participating in Parkinson's Clinical Research : Questions to Ask The pamphlet is online on the PDtrials.org website at: http://www.pdtrials.org/pdf/checklist.pdf Or you can order paper copies by emailing them at [log in to unmask], or call (800) 457-6676, This checklist was also based on the "Declaration of Clinical Research Rights and Responsibilities for People With Parkinson’s." http://pdpipeline.org/advocacy/rights.htm --------- Original Message ---------- From: Kathleen Cochran <[log in to unmask]> To: [log in to unmask] Subject: Re: Thanks to all Date: Thu, 5 Nov 2009 09:08:15 -0500 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. > > http://go.microsoft.com/?linkid=9690331&ocid=PID24727::T:WLMTAGL:ON:WL:en-US > :WWL_WIN_evergreen:112009<http://go.microsoft.com/?linkid=9690331&ocid=PID24727::T:WLMTAGL:ON:WL:en-US%0A:WWL_WIN_evergreen:112009> > ---------------------------------------------------------------------- > To sign-off Parkinsn send a message to: mailto: > [log in to unmask] > In the body of the message put: signoff parkinsn > > ---------------------------------------------------------------------- > To sign-off Parkinsn send a message to: mailto: > [log in to unmask] > In the body of the message put: signoff parkinsn > ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn