I, too, attended the meeting in Rochester; and as Myrna said, it was wonderful to be around so many others who have the same problems and experience the same things we who have OT experience. There was no need to explain WHY we couldn't stand, and WHY we all looked for a place to sit ~ top priority!
I was first diagnoised in 2001; but the neurologist couldn't give me any information regarding OT, just a name for the condition. I saw another neurologist in 2003 because I was getting worse. He also told me I have OT; but said they really didn't know what to do for it. I also tried a "laundry list" of drugs; but was unable to tolerate them.
That's when I got on my computer and started searching; I found Gloria's site and from there started an "online friendship" with Harriet, who lives in NY, (I now have many"friends" with whom I correspond and compare experiences). Harriet suggested I try to get an appointment with Dr. Seth Pullman at Columbia Presbyterian Medical Center. I did, he tested me and confirmed I definitely have OT. He gave me all my records; which have been helpful.
I take a very low dosage of Klonopin and it does seem to 'take the edge off'; but I can see the progression from when I first noticed symptoms of OT ~ approximately 12 years ago. It is important to try to keep a positive attitude and do as much as you can ~ while you can.
There are so many of us who are trying to get the word out to neurologists so they will know OT when they see it. This meeting in Rochester was a really BIG first step; and I feel we are on our way to helping the medical community better understand OT.
Had it not been for Gloria's website; many of us would still be searching. Also....to Peggy who found Gloria's site and put together the meeting in Rochester; to both you ladies ~ from the bottom of my heart ~ THANK YOU!
So Myrna, I look forward to seeing you again at our next meeting; and to you Joyce, we will all look forward to meeting you in the future.
Just remember, you have many friends here on this site who will try to help you, if you have questions.