Parkinson's Disease Tulip


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Old 09-04-2007, 11:35 AM #1
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Default My Experience in a Parkinson’s Clinical Trial...by JeanB

My Experience in a Parkinson’s Clinical Trial

By Jean Burns
September 4, 2007

I was diagnosed with Parkinson’s disease in January 2003. I immediately tried to find out everything I could about the disease. I learned it is progressive and incurable. But I kept telling myself there must be something I could do to fight it. Then I stumbled across “clinical trials” as I searched the Internet.

I found a listing of clinical trials for PD and located the ones in my community. I focused on one in particular with the potential to be neuroprotective. It had shown promising results on tests on primates. It had also been shown to be safe in the initial trial on humans.

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Old 09-04-2007, 12:20 PM #2
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Talking What a morning!!

Thanks Caroyn!

What a surprise (and honor) to wake up this morning and find my article was published by both MJFox and PDTrials!

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Old 09-05-2007, 08:54 AM #3
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Default me too

I was in this trial as well. thanks for posting this.
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Old 09-05-2007, 09:58 AM #4
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Default great job!

Way to go, Jean! It's cool that you both participate in clinical trials and raise awareness!
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Old 09-05-2007, 11:14 AM #5
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Default Excellent Information, Jean

What an excellent article about clinical trials. I suppose it is the same with these trials as it is with so many things...people's attitudes, i.e., "How can I (one person) make a difference?" Or, "Let someone else do it". Yours is a wonderful "story" of determination...desire to find a cure, Jean. Even though there was not a positive outcome for you in the clinical trial, that has not daunted you. It is an amazing attitude such as yours, i.e., that you understand and know so well that this is the ONLY way..the only hope of finding the way to the elusive cure. I admire your courage and strength to continue to be a most wonderful advocate for a cure for all of us. Thank you.

Therese
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Old 09-06-2007, 09:52 AM #6
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Red face particiating in trials

Therese & Indigogo & pdcav,

Thanks for the kind words and sentiments. Yes, I make talking about my experiences in clinical trials part of my pd advocacy. I've gotten feedback in the past that because I've been in a failed trial and yet am still out there promoting trial participation, that my experiences give 'weight' to my words. Perhaps thats true.

Best to all - Jean B

P.s.I somehow lost my password so i re-registered with Neurotalk - duh ...
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Old 09-06-2007, 10:09 AM #7
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jean, try logging on again with your regular username. you can get a new password emailed to you.
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Old 09-06-2007, 12:26 PM #8
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Default Curious

Thank you -- hooray - back to being jeanb!!
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Old 09-06-2007, 12:40 PM #9
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Grin

you are very welcome
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Old 09-09-2007, 07:53 AM #10
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Unhappy things to think about

Fewer than 1% of pwp participate in clinical trials.

For people with cancer - it's under 5%. So while that number is still low, it's still 5 times higher than for people with PD!

So regardless of how promising research may be, because so few people participate in clinical trials, it takes a very long time (too long) for any new treatments to get to us.

It's easy to talk about the problem. It's harder to be part of the solution.
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