Boann, Thank you for posting. I thought I'd be the only person posting on this thread... LOL again... and again.. and again...

If you are not yet on meds, you (and others like you who are NOT on meds yet) are DESPERATELY needed to participate in clinical trials for substances that may be neuroprotective.

That's what many of us are looking for - a way to slow or stop the progression of the disease. But they are only accepting pwp not on meds yet.

Regardless of your choice, I respect your decision. Kind regards & wishing you well,

trial for creatine

trial for green tea

JeanB; This is my story

I was diagnosed with PD in April, 2003. Upon diagnosis I did two things. I looked into local support groups and I called up the Columbia University Medical Center about joining a clinical trial. I found a support group nearby and attend it every week. My initial trial was PRECEPT 1347 which has since been discontinued. I then requested that I be put on any available trial. I am now on three. Please note that my regular doctor was not involved in any of these decisions. He only became aware of them during my yearly appointment. He wasn't too pleased but there wasn't much he could do. I have since come to believe that your GP is one of the impediments to enlisting more patients for clinical trials. Some of them may have difficulty with sharing control of the patient. For example, my PD doctor requested a certain medication for my blood pressure contrary to my GPs recommendation. When I attended the Parkinson's Disease Conference in WAshington DC I found a number of patients who would not join a clinical trial because of their GPs advice.

All the best,


Lloyd

Lloyd,

THank you for your story - I participated in the same trial. And we're probably in the follow-up trials as well.

The first neurologist I went to didn't know about the CEP trial either. I just asked him if I met the criteria. I did, joined the trial, and then found a movement disorder specialist (MDS). Unfortunately MDSs are not always available to PWP. I was lucky in that regard.

It's too bad GPs are so uninformed about the importance of clinical trials!!! They are part of the problem, that's for sure.

Good luck to you!