Participation

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Theresaann
Posts: 68
Joined: Sun Jun 24, 2018 6:43 pm

Participation

Post by Theresaann »

I am somewhat disappointed in the lack of participation from those "involved" in this support group. It's nice to know we aren't alone with our condition, but most of the responses are very old. And why am I receiving a notice that states: "You cannot make another post so soon after your last."
Theresaann
Posts: 68
Joined: Sun Jun 24, 2018 6:43 pm

Re: Participation

Post by Theresaann »

It's me again complaining again about the LACK OF PARTICIPATION. What does anyone think this lack of participation problem is all about??? There's safety in numbers!!!! (That's what I was told by my parents when I was growing up.) Well, I think it applies here, relative to OT. There needs to be more people involved. We need to somehow get the medical community involved. My neurologist told me this month (9/2019) that "a pill for OT is in the works but won't be available for at least another year." Has ANYONE been asked by their neurologist if they would be willing to participate in any clinical trial for a medication to reduce the tremors of OT???? Nothing out there at this time in history works consistently, and, if it's there, no one is sharing the info. C'mon everyone!!! Get involved!!!!
Billingsly
Posts: 1
Joined: Tue Oct 01, 2019 5:33 am

Re: Participation

Post by Billingsly »

Can you think of any other ways to get involved besides asking our neurologists to participate in the trials? I feel like not many would be up for that at all.
Theresaann
Posts: 68
Joined: Sun Jun 24, 2018 6:43 pm

Re: Participation

Post by Theresaann »

Hmmm. I wish I could think of other ways. I tell anyone who will listen but I'm sure that doesn't generate enough interest in our plight. I don't do it for sympathy, but just to pass on the knowledge that such a condition exists. Maybe letters to the Surgeon General???
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