This is the "main" forum that contains new introductions and other topics. A place to talk about your experiences, thoughts and advice.

Moderator: gloria

By maria teresa
#6156
I live part of the year in Johannesburg,South Africa and some in Avigliana (Torino) Italy. I would like to know if there is a "Support Group" or "Forum" in these two countries. I was diagnosed in Johannesburg, but in Italy OT seems not very well known yet....I would appreciate any information, help!! Thank you. Maria Teresa Rogers nee Giai-Coletti
By Theresaann
#6162
I find it discouraging that there are very few recent postings by anyone with this disorder. It seems to be getting worse for me, with tremors in my arms and hands on too often an occasion. My neurologist told me that there is basically no research on this disorder. That too is discouraging. I live in Massachusetts, USA and have had this rare disorder for nearly three years. I am very grateful for online shopping since I can't stand in line to shop (I have always hated shopping anyway...) No medication helps. What is our fate??? Good luck to you, and prayers for you, me, and all who suffer - yes suffer - with this condition.
By adrianoconnor
#6163
Hi Theresaann. I know exactly how you feel. I've had OT for at least 12 years or more.But only diagnosed about 6 or 7 years.
When I first found out what was wrong I felt s since of relief thinking there would be some medication to make it all okay. But alas thats not how it turned out. When I found the OT website I thought it was fantastic to share things with other sufferers and I must say that Gloria has done a wonderful job.
I think when we fist find out what's wrong with us we look forward to getting better and finding the OT site gives us more hope. It is really encouraging to hear what other people have tried to find relief. I have copied a lot of thing people have tried. The one thing we all share is hope. Often when you go to a practitioner of some kind or another, you know in your heart it's not going to work, but you feel it worth a try anyway.
I feel because we all suffer from the same complaint, to varying degrees, that you might feel reluctant to shout about your problems to others who may be in a far worse position than yourself. One of our biggest problems come from people who do not suffer from OT. Tell them a hundred time what's wrong with you. They carry on as if you've said nothing. I carry a walking cane as a prop, it tells people there's some thing wrong with me. otherwise, because it's not visual, people just block your way until you ask to get past.
Hope I haven't gone on too long. I find it better ( easier) to talk about my experience in dealing with OT rather than talking about my symptoms.
Keep positive Regards from Adrian
By Theresaann
#6167
I finally found someone who responded! THANK YOU!

I don't know if I'm not entering info and questions correctly, or if the site is just becoming defunct, or if no one wants to answer, or if there are no answers. Communicating with other "sufferers" of this rare condition creates hope. I've asked a few questions but, unless I just don't know how to find the responses, I haven't received answers. E.g., does anyone find that the tremors increase dramatically when in a place where there is brightly lit LED or fluorescent lighting (stores, church halls, etc.). Does anyone find that swimming routinely helps lessen the tremors? Wishing you a happy holiday season, and, if you celebrate it, Merry Christmas. Theresaann

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