Re: "Participate in a support group"
Posted: Wed Jul 29, 2020 1:01 pm
Hello all....
Just checking the Forum and found all the posts above. I live a loooong way from all of you; I live in Florida.
I have had OT for over 27 years! It started with few symptoms. Some weakness in my legs, and balance poor (however, I also have vertigo), but they are different.
As I progressed, I went to a Neurologist; he knew nothing about OT and suggested I see a psychiatrist; did that at the Mayo Clinic in Jacksonville, FL. The Neurologist there told me there was nothing wrong with me that he could find. So much for that!
I ended up seeing nine, yes, nine, Neurologist before I finally got a diagnosis, but none knew what to do for it. The one who told me what I have, said the only thing he knew was it is rare, the cause is unknown, there was no cure and it is progressive. Even though he had no advice for me, I was happy I finally had a name for what I have.
I started searching the Internet and found this website ~ what a God send!
I posted and heard from several people and became friends with many. I was told I should come to New York, go to Columbia Presbyterian Medical Center and see Dr. Seth Pullman. I made an appointment and saw him in December 2003.
He gave me many tests and gave me a TRUE diagnosis. He also gave me copies of all the tests he did so I could have them for my records.
As for coping skills, I feel we all find what works best for us. I now use a walker to get around, have a stool in the kitchen and bathroom (for brushing teeth, hair and makeup ~ yes! still put on my makeup every day). When in the kitchen, I use the counters to get around, but still have my stool and walker as well; gets a bit crowded at times, but I manage.
My standing time is about 30 seconds before I must sit.
For Theresaann: You wrote: "Has anyone else noticed that the tremors are worse in stores, function halls, etc., that use fluorescent lighting??? Or is this my imagination?"
I have not noticed my tremors are worse under the conditions you mentioned; but I do find when in ANY crowded room, my tremors are worse. Just the number of people puts stress on me. I fear someone will 'bump' me and I will fall. That is a major concern for me, the fear of falling. Even the slightest bump and I lose my balance. I have not noticed any difference, whether in regular lighting or fluorescent lighting.
I hope this has been helpful to all of you. If anyone has any questions they would like to ask, please do.
One more thing I would like to add; if any, or all of you could decide on a place to meet, do so! It makes such a HUGE difference to MEET, SEE and TALK to someone else with OT. You can share so much. I know, right now is not a good time with this pandemic, but....this too shall pass. Stay strong!
Betty in Florida
Just checking the Forum and found all the posts above. I live a loooong way from all of you; I live in Florida.
I have had OT for over 27 years! It started with few symptoms. Some weakness in my legs, and balance poor (however, I also have vertigo), but they are different.
As I progressed, I went to a Neurologist; he knew nothing about OT and suggested I see a psychiatrist; did that at the Mayo Clinic in Jacksonville, FL. The Neurologist there told me there was nothing wrong with me that he could find. So much for that!
I ended up seeing nine, yes, nine, Neurologist before I finally got a diagnosis, but none knew what to do for it. The one who told me what I have, said the only thing he knew was it is rare, the cause is unknown, there was no cure and it is progressive. Even though he had no advice for me, I was happy I finally had a name for what I have.
I started searching the Internet and found this website ~ what a God send!
I posted and heard from several people and became friends with many. I was told I should come to New York, go to Columbia Presbyterian Medical Center and see Dr. Seth Pullman. I made an appointment and saw him in December 2003.
He gave me many tests and gave me a TRUE diagnosis. He also gave me copies of all the tests he did so I could have them for my records.
As for coping skills, I feel we all find what works best for us. I now use a walker to get around, have a stool in the kitchen and bathroom (for brushing teeth, hair and makeup ~ yes! still put on my makeup every day). When in the kitchen, I use the counters to get around, but still have my stool and walker as well; gets a bit crowded at times, but I manage.
My standing time is about 30 seconds before I must sit.
For Theresaann: You wrote: "Has anyone else noticed that the tremors are worse in stores, function halls, etc., that use fluorescent lighting??? Or is this my imagination?"
I have not noticed my tremors are worse under the conditions you mentioned; but I do find when in ANY crowded room, my tremors are worse. Just the number of people puts stress on me. I fear someone will 'bump' me and I will fall. That is a major concern for me, the fear of falling. Even the slightest bump and I lose my balance. I have not noticed any difference, whether in regular lighting or fluorescent lighting.
I hope this has been helpful to all of you. If anyone has any questions they would like to ask, please do.
One more thing I would like to add; if any, or all of you could decide on a place to meet, do so! It makes such a HUGE difference to MEET, SEE and TALK to someone else with OT. You can share so much. I know, right now is not a good time with this pandemic, but....this too shall pass. Stay strong!
Betty in Florida