Alex thank you for your volunteering. I believe it helps us all.

For years, I have been wanting to participate in PD clinical trials and any other sort of trials, tests, whatever. I was ruled out for all sorts of reasons, including that I don't have PD, I have a parent with PD, I'm not an Ashkenazi Jew, I like to far away from a testing center, etc., etc. Finally, a couple of months or so ago, I found one that didn't exclude me: the largest PD study yet, I believe, which requires completing a comprehensive on-line medical background form with quarterly follow-up updates...for the next 15 years. Not only am I participating but I also signed up my mother, for whom I completed the same lengthy form and with whose input I will continue the study on a quarterly basis. Keeping my fingers crossed that someone will read and correctly interpret all the information that study participants provide and, also, that it all will be put to good use towards a cure, prevention, and new therapies!

The MDS pick him to participate in the beginning of a project that he and the university students were developing. He was to go in a room with a visor on his head and it was virtual reality where he was to pick something off the shelf and also water some plants, etc.
However he had to go through a verbal test testing before he got to this step, but he failed that test so he wasn't moved to the visor part. I think they wanted to make sure he understood the directions properly before they moved him on.
I think they were trying to develop something to help PWP but this was in the early stages. This was 2 years ago and I haven't asked the MDS if the project has been completed yet.
The testing was very stressful for my husband and we had to drive to the city a few times and then to have failed the test, so it wasn't a good day.
They also asked him to join another study where he would wear a monitor on his chest wherever he went and to keep a journal of his activities. It was a very hot summer to begin with and he didn't need the extra stress so he turned them down.
So that is our experience with studies as they aren't for every one with PD. I am glad some people are able to help though and I hope through the studies they find a cure. It's just that PD is so wide spread with the symptoms affecting people differently, so that it make it very difficult to find the cure or what is causing this disease in the first place.

"I was ruled out for all sorts of reasons, including that I don't have PD"

It was mentioned at the Partners for Parkinson's event I attended a few weeks ago that what most trials have a hard time getting are people without PD to use as control groups. So be encouraged, you are needed even if you don't have PD.

HI ALEX,

GREAT TO SEE YOU VOLUNTEERING YOURSELF FOR RESEARCH, GOOD ON YA MATE.
IT ALL HELPS TO ACHIEVE OUR COMMON GOAL.
I FEEL GOOD WHEN I DO THIS, I FEEL SURE THAT,
YOU WILL TOO.

IT IS GOOD TO SEE THAT YOU ARE,
MAINTAINING A WINNING POSITION.

ALIVEO/STEWART
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