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 lindainnd
#5958
I live in a state where there is no other person, that I am unaware of have OT. I am very interested in a conference call support group (if there is anything like that). Please contact me ASAP.

Thank you
lindainnd
By gloria
#5960
Welcome Linda: Why are you certain that there is no other person where you are? Were you just diagnosed with OT and have you asked your neurologist about someone near you that you can contact ? I'm sorry too that you just missed a large research & meeting in Omaha,Nebraska. You have not given your location however you say that you are very interested in a conference call support group. Just being a registered member here on the website is your OT support group that you can post your way of communication, ask questions, and report your OT life etc. with other OT people. I welcome you as a new OT friend and look forward to your postings, Gloria
By lindainnd
#5963
Hi Gloria, it has been awhile since I posted anything on the forum. I live in Mandan, ND, I see my Neurologist twice a year. each visit I asked if anyone they can contact me. I also put the letter about September OT month still no contacts. I have had OT for about 15 to 16 yrs. I was dioginist with Epilepsy close to a year before the OT. I will be 63 this month, as hard as I keep the walking, floor exercises and for me, I need to stay away from sugars and caffeine also processed foods. I do not know what the long-term effects will be, but the condition seems to get worse. I live alone, no family support. Work and Friends are not in my life anymore. No one understands the OT condition unless they have it. I do read many posts in the forum which does remind me I am not alone. Thanks Gloria
By iris Thompson
#5966
I live in North East Tennessee it took you months and $5,000.00 of test and different doctors before I got my diagnosis of orthostatic tremors. I had had it for ner of years but could walk off and it would stop. I called it shaking and did not mention it to a doctor until my daughter a nurse saw an episode and was getting worse. My family doctor had no clue so I began seeing doctors even a neurologist and gave him exact symptoms he did nother know and did not even mention OT. Five to six months later when I couldn't even stand or walk did he diagnose me with OT and then I went to a movement Disorder Center in Alabama and same diagnosis. Neurologist says not a progressive disorder but I have lived with it and know better! My husband can't even understand what it is and what happens!
By Theresaann
#6299
I would really like to know the answer to what I posted on Wed Oct 24, 2018 5:48 pm:

Has anyone else noticed that the tremors are worse in stores, function halls, etc., that use fluorescent lighting??? Or is this my imagination?
By Mupe51
#6314
HolaTheresaann.
A la pregunta que hiciste si en las tiendas o salas de eventos te sientes peor...mi opinión es que no creo que se deba a la iluminación fluorescente...el problema es que necesitamos sujeción de algo o de alguien y sentarnos . y en esos sitios no suele haber una silla dispuesta para nosotros..a no ser que la llevemos nosotros...es cierto que estamos peor ,porque queremos llevar la misma vida que teniamos.. un saludo...
By Theresaann
#6329
Mupe51: Thank you for your comment. (I had a friend translate it for me.) For me, it isn't that I worry about a seat. I have a walker WITH a seat - a rollator - so it's "have seat, will travel" for me. I feel strongly that it is the fluorescent lighting because, in certain retail stores, my tremors increase greatly. I can't be the only one with this situation. By the way, I purchased my rollator from Amazon. It was half the price of purchasing it in a medical supply store or a pharmacy. The prices have a good range in Amazon. I had to assemble it, but it was just a case of putting the section with the handles into the section with the seat and wheels.
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Thanks so much,I will check Amazon.😀 Bevnix