Carolyn,

I think there is a fine line between acceptable risk and self harm, and the individual concerned is the only one who can see where their own line is. What I mean is not to agree to anything that might be harmful to you just for the sake of helping the pharma with their experiments. Patients need affirmations of what will be done for them in exchange for the use of their bodies and brains. To balance that is the knowledge that having PD is pretty dangerous, too.

I think that the Patient Bill of Rights Perry speaks of will help individuals get clear in their own minds what they want to do and what questions they may want to ask.

Again, I encourage my fellow patients to participate in research. I just think that the decision to do so is very personal, so don't let anyone pressure you into it unless you feel it's right.

Jaye