
Parkinson's Disease Support Group
Parkinson's disease is a movement disorder often characterized by muscle rigidity, tremor, a slowing of physical movement, and in extreme cases, a loss of physical movement. The primary symptoms of Parkinsons are due to excessive muscle contraction, normally caused by the insufficient formation and action of dopamine, which is produced in the dopaminergic neurons of the...
I just started my first clinical trial in August, and it really makes me feel like I'm helping with the fight. Even if it doesn't benefit me directly, I feel better thinking that I might be helping patients in the future. There's different levels of invasiveness involved; the one I'm on is a breeze because I don't have to worry about what meds I'm on (I just have to report them) or adjust my diet or anything. There are rules to follow, which ensure that the trial is scientifically conducted, and you have to decide whether these rules are something you can live with or not. In my case, all I have to do is mix this unknown powder with grape juice and drink it twice a day for 5 years. Oh, and go to some checkups now and then.
My personal opinion is that if you can find a clinical trial that you can live with (some have a certain amount of risk involved, too) then you should at least try it. It really helps, and that can only make you feel good.
Let us know how it goes and what it's all about.
Anyway, I was a little leery about my privacy and how confidential the survey sponsors would keep my information. They assured me that they would do their HIPPA best. So, I signed up. So far, I spent 4 hours with a psychiatrist who asked me every conceivable question regarding my life habits and so forth. A little embarrassing at times, but not overly weird. You have to remember, they are covering the gamut of behaviors from sleep disorders and worry to compulsive sexual activity. The latter stems from evidence that some meds (like Mirapex) can trigger the "rewards" center of your brain and cause wildly out of control gambling and excessive or uncontrollable sexual activity.
Anyway, I did not hava to report any urges to frequent casinos and my libido seems normal for a physically fit 60 year old male. The rest of the questions seemed to center on mental stability, history of anxiety and depression,and the like. Not too intrusive.
All in all, the experience was painless and I feel that I gave enough information to apply to the clinical paradigm they are creating.
Would I recommend participating in a clinical trial? Sure. They even pay you a small stipend for your time. If it helps others, why not?
Heavy D