The Orthostatic Tremor Forum (archive)

Hi! Pat: Thanks for reporting your ' Standing Time' and how you are managing your life with OT. Will look forward to seeing you in Omaha in September too! Gloria

Hi Gloria. Hope you are well. I would just like to encourage people to use wheelchairs when flying. About two years ago I was traveling from England to Ireland and got stuck in the security hall behind about 700 people. I had a stool and had to shuffle along till I got to the counter. By this time I was completely exhausted. From this time on I have used assistance at every airport. I find it useful to book assistance at the same time as booking your ticket. The difference is unbelievable and brings some enjoyment back to your journey. I know it might look odd when you get to your destination and step out of your wheel chair (and walk away) but that is because no one knows you've go OT.
Best wishes Adrian O'Connor

Hi All,

I may +/- 2 sec. stand, but walking is not longer possible for 1 year.
My Neurologist has my brain, nerves, blood vessels and muscles measured but could not find anything.
To buy a small thing I use a folding chair.
Sorry for my English but my native language is Dutch.

I still have sometimes more sometimes less courage but like to laugh very much. ))

Love to all ot sufferers and everyone else.

Alibaba (72 year)

Alibaba: Thank you for posting your standing time. When you were you first diagnosed with OT were you given a EMG at that time to confirm OT? Walking at a good pace is something many OT'ers can do. Sorry to hear that you have been unable to walk for the last year.

Wishing you all the best and keep us posted, Gloria

PS: Have you tried a walker with a seat??

Hi Gloria,

Yes I had a Emg. I have OT +/- for 15 years.
When I use a walker with a seat than I am blocking.
I also live in an apartment with an elevator to the 5th floor and then another stairway so ...
I also have problems with opening doors

Thank you Gloria for your interest and good advice

Alibaba

Hi! All: Here I am reporting in again in less than a year with a change of my standing time from 15 seconds to just what I call the possible end of my progression of standing time. Of course I have had OT for 30 + years and so I'm not surprised to report that I notice recently that I just stand-up and within 5 seconds I get the "call" to set down. Gapapentin has never been any help stopping the lessing of our standing time it just lessens the feeling of the intensity of the tremors. Gloria

PS: Please update when you feel a change in your standing time, this will help determine if there maybe a common OT progression with time.

Hello Gloria,
I am going to my Neurologist next week and I am going to request a test for low magnesium.as I read if its low it causes tremors.
Bevnix
Maine