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Topic PD Studies and requests to particpate Go to previous topic Go to next topic Go to higher level

By jsmitch On 2016.07.07 11:50
Over the years we have had clinical trials or academics asking for participation in data collection. Ninety-nine percent of the time these folks contact me first, get vetted and then get permission to post on the site.

Last week we had one sneak through and post without permission. He claimed to be a student from Singapore studying the effects of Parkinsons and posted a url to volunteer information. I removed the post as soon as I saw it. I tried to verify his credentials but was I was unable since he provided, either by accident or design, an invalid e-mail address.

If I introduce or endorse the posting then study has been vetted and is legit. If you do not see my involvement, please do not click on any associated urls and contact me so that I can deal with the issue.

Jim

By VioletV On 2016.07.07 20:36
thank you, Jim, for looking out for us!

And, for everybody else. When was the last time you clicked the Donate button at the top of the page and added your bit? (If you can--I can, so I do, a little every month). Jim is a volunteer with no personal involvement with PD who runs and supports this forum -- a god send for all of us.
VV

By EachDay On 2016.07.07 20:36
Thank you for clearing that. The request did not seem legit to me but thank you for determining that was true.

By Mary556 On 2016.07.07 21:21
thank you for everything you do for us, Jim.

By determined On 2016.07.07 23:41
maybe this thread is finally the best way for me to post - something I have been meaning to do for a while, but wanting the first post to be very articulate and not sure how to do it best. Yet Jim's comment is making me just jump in and change the tone a bit, because it made me realize that I first need to tell you that I belong to both worlds (academics and the world of being someone with a loved one a PWP), and see how you feel.

It is actually that combination that makes me feel that I am in a unique position to <try> to do something for PD on a greater scale (the personal story gives me the insight and passion, and my professional side gives me connections and chains I can yank).... Having just begun to appreciate the depth of the abyss that PD is, the extent of the problem at every level, I simply cannot not try.

And I have come to appreciate just how knowledge is here, among the caregivers. It is therefore with you that I wanted to have several conversations first. But I don't want to impose, make you to feel uncomfortable with yet another nosy academic, etc. So I will give you my story briefly, and you decide if you accept me into your fold, and if you are willing to have a conversation together so we can try to make a difference...maybe not on a timescale that will help OUR loved ones, but at least someone else...
I will answer any and all of your questions. I will not impose if you are uncomfortable. I won't judge if you do not trust me right away, or even at all. tell me how it is- this is what is special about the forum.

So here is my story... I apologize in advance that it will be long-ish....

anyway, I posted many years ago (2008) under a different name

my thread (http://www.myparkinsons.org/cgi-bin/forum/topic_show.pl?id=1758) elicited quite a chain of responses...

at the time, the input I got was overwhelming, probably just like when a PWP goes to a first support group meeting.
So I stopped reading the forum at that time, because I was overwhelmed that I wouldn't be able to live in the present, to not feel like I had made a mistake. I am, however, very grateful to those who responded (some still active on the forum, some like annwood are not). It was a dose of reality that made me not bring kids into that situation in the end. It was not the easiest decision, because I certainly wanted kids, but I know it was the right one. I owe all of you for talking sense into the romantic version of me.

It WAS a lot to process, and I didn't read the rest of the posts and went back to that life. But that life was crazy complicated. Me and my PWP were living on different continents too, there were too high-level academic jobs, one option of coming to the same institute where neither one of us would have taken a career hit didn't pan out, and we were back to thinking and long-distance. and that is when the relationship started to get more and more complicated. I won't go into the details, and at the time I thought it was just something about us and the stress of long-distance. My PWP pulled more than a couple of stunts, the type only caregivers here would intuit, and I --not having connected it to PD at the time -- broke. So for about 3 years now. we remain very close (he will always be family to me), but have committed not to disrupt the other person's professional situation. I know that doesn't earn me the stripes of a caregiver in the true sense you what all are doing, but it is still a large part of my life - he is the love of my life, and will always be family.

Things were more or less "normal on PD scale" till about a year and a half ago. And then I started noticing things that triggered an alarm (some of the compulsory behaviors, etc)... This is when I remembered the forum, read it front to back and back to front. I was humbled, because suddenly the mess of the previous years was not specific to "us", it was clearly much more PD -related than I had been realizing (and I am a neuroscientist, so the humbling thing was pretty deep).

Now I read the forum religiously, although I haven't been posting.
As we are much further along on the journey some 8 years later (although he is still highly functioning), I have begun to grasp the depth and complexity of the problem at the scientific and sociologic level.

And as my PWPs condition has begun to progress, I find an enormous amount of useful practical info. Also a lot of ideas that feed into my science (I have started working on PD a bit as well in my own lab, but also thinking of trying to do something on a larger scale).

Okay, this is already crazy long, and I am not even sure how Jim or you all will feel about my post, and whether you may prefer me only to wear my "someone whose loved one has PD" hat and not the academic part, or the part that is thinking hard of what to do on a larger scale.

So I will wrap up for now. Sorry if it was not terribly articulate, and a little rambly. I wasn't planning to post today, but saw Jim's thread and your responses, and thought there wouldn't be a better time to present my hats and have you tell me if and how you welcome my participation.

no matter what you tell me, know that I have enormous respect for all of you. Michelle, yours was the first post in my 2008 thread. When I got back to the forum a year and a half ago, I read every one of your posts in one day, I think. Al- I am beyond being in awe. Your insights, and our dedication to helping caregivers understand touched my heart like nothing else. And everyone else- I feel I owe you so much.

much love to you all


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