Have you met anyone (not here on the OT website or at the Michigan meet) who had OT?
Are we really that rare and special? Or is it possible that one or more of you have actually run across someone , in the wild so to speak, who was dealing with this disorder?
Maybe it is possible that we are so adept at hiding OT that another OTer could be in our vicinity and we wouldn't know it.
Any stories of meeting another OTer accidently?
Have you ....
Moderator: gloria
Re: Have you ....
.... "actually met another OTer?"
My answer is no, tor so far. As said in another thred on this forum, my neurologist professor who is actually now retired, has only had 5 patients during her whole career.
I have met medical people who has vaguely heard about the syndrome, but none of them has met another OT'er either.
But - I agree with your thought. There might be someone close by. So I suppose keeping talking about it might give a reaction sooner or later. I'll certainly try!
All the best from the far North,
the golfnut.
My answer is no, tor so far. As said in another thred on this forum, my neurologist professor who is actually now retired, has only had 5 patients during her whole career.
I have met medical people who has vaguely heard about the syndrome, but none of them has met another OT'er either.
But - I agree with your thought. There might be someone close by. So I suppose keeping talking about it might give a reaction sooner or later. I'll certainly try!
All the best from the far North,
the golfnut.
-
Abinadi
- Posts: 53
- Joined: Thu Feb 05, 2004 3:36 am
- Location: Volcán, Chiriqui, Panama (Central America)
Re: Have you ....
I know what you mean about the neurologists. The story seems to be the same with all of them. When I self-diagnosed myself using the internet in 1994, I took my printouts with me on my appointment to the neurologist. After he read through them, he reconsidered his diagnosis and agreed that I had, as he put it, Primary Orthostatic Tremor.
I asked him what the word "Primary" meant in this usage. His reply was that the use of the word meant that they did not know what caused it! Interesting take from a member of the medical profession which seem all too reluctant to ever admit they don't know something about their area of specialty - at least some of them.
At that same time, I asked him how long he had been in his practice. His reply was 35 years. When asked how many patients he had seen with this disorder, he said he had seen two in all that time - and that I was one of the two!
It's so nice to be special and unique. Heh, heh.
So, that is why I posted this thread. I suspect that we are a tiny subset of a tiny minority and that if we are ever going to get any real attention to this dilemma that we have, it will be because some neurologist will develop his own condition of OT somewhere during his career in neurology. Then, we might see it receiving some attention. Because I have this visual of just such an OT-afflicted doctor sitting on a stool (instead of standing) at the front of a meeting in a large hall somewhere filled with his peers and trying to convince them of the need for funding and research of this disorder.
Until that day, I fear we are but an oddity and a (very small) footnote in the medical annals.
But it is an interesting quest to be on the lookout to see if we run across another such fellow oddity in our life's experiences.
Dancing and jitterbugging in Panama, Rich
I asked him what the word "Primary" meant in this usage. His reply was that the use of the word meant that they did not know what caused it! Interesting take from a member of the medical profession which seem all too reluctant to ever admit they don't know something about their area of specialty - at least some of them.
At that same time, I asked him how long he had been in his practice. His reply was 35 years. When asked how many patients he had seen with this disorder, he said he had seen two in all that time - and that I was one of the two!
It's so nice to be special and unique. Heh, heh.
So, that is why I posted this thread. I suspect that we are a tiny subset of a tiny minority and that if we are ever going to get any real attention to this dilemma that we have, it will be because some neurologist will develop his own condition of OT somewhere during his career in neurology. Then, we might see it receiving some attention. Because I have this visual of just such an OT-afflicted doctor sitting on a stool (instead of standing) at the front of a meeting in a large hall somewhere filled with his peers and trying to convince them of the need for funding and research of this disorder.
Until that day, I fear we are but an oddity and a (very small) footnote in the medical annals.
But it is an interesting quest to be on the lookout to see if we run across another such fellow oddity in our life's experiences.
Dancing and jitterbugging in Panama, Rich