"Participate in a support group"

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

Moderator: gloria

Posts: 388
Joined: Thu Jan 22, 2004 3:08 pm
Location: Melbourne, FL

Re: "Participate in a support group"

Post by Betty »

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
Posts: 32
Joined: Sat Oct 22, 2011 8:53 am
Location: Ireland

Re: "Participate in a support group"

Post by adrianoconnor »

Hi Betty. Glad to hear you are still managing to get around. Thank you for sharing your story. Lots of what you say seems to be a common experience to most of us. I know when I was diagnosed ( 7 or 8 years since) although I have suffered OT for some 14 or 15 years. I thought knowing what it was I would be given medication and off I would go. As you know, it don't work like that. I was given Gabapentin which made me giddy from the first time I took it and has continued ever since. When I went back to the neurologist, he more of less showed me the door. Many years have past without any medication. Recently the giddiness has got so bad I have been to see a different neurologist. So will see what happens. I wish that the neurologists would be more up front and say that there is little they can do for us. You seem to go in to see them with great hopes and come out so disappointed. I get the impression, that between us, we know more about OT than a lot of doctors.
Hope I'm not being too negative. By the way I play Irish traditional music which keeps the spirits up.
Best wishes for now. Adrian O'Connor, Ireland.
Posts: 1
Joined: Mon Feb 13, 2017 5:45 pm

Re: "Participate in a support group"

Post by Walsh »

I have suffered from Orthostatic tremor for15 years. I am on pramipexole 0.88 mgms daily which helps the tremor. Would be interested in up dates
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