Carolyn,
It is a personal choice and your explanation is appreciated. Clinical trials are coming to the forefront like never before , but they don't have a very good reputation. I'm sure compensation hasn't occured to most people, but then we are looking for increased participation are we not?
For a change to take place, something has to be changed. Sharing your experiences is very important but in the end it is a personal decision not to participate as well. We have been striving to keep people informed; but bottom line is clinical trials involve taking risks and people need assistance.
In other words, you may be stronger than many typical pwp with as many years of PD under their belt, which is a good thing. I'm not trying to take away from what you are going thru to get there....it makes me tired by just reading it. I truly admire your determination and hope we all benefit from it.
Vicky,
PDF (Parkinson Disease Foundation) does not have groups. Could it have been some other group? Both the FDA consultants and the FDA are feeling their way at how best to use the patient advisors. There are many regulations that must be navigated but they were recently included in the meeting about pulling Permax off the market.
Here is the Pipeline Project Strategic Plan, which is ever changing with events and time. We are supported by the Parkinson Disease Foundation.
http://pdpipeline.org/aboutus/stategicplan.htm
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In all these situations, I think one of the main things to keep in mind is that we are all different. With any form of advocacy, we all bring our personal stories to the table but they are not at the forefront. Striving for changes that will benefit all should be the goal. The more 'me' in the process, the less successful you might be.
People can't be forced, nor should they feel inferior if they do not participate in clinical trials. But we can try to make this a better process, a more successful experience for those who do and that is what we are striving to do. We want patients to be informed enough to manage their own course with the help of their physicians.
paula