Coping with OT

[George Allen]

The worst thing about OT is that on the exterior the person suffering from this condition appears to be normal.

I was diagnosed when my regular doctor sent me to see a neurologist. Like many of you, I was worried that it was the start of Parkinson Disease and was relieved to receive the diagnosis of OT.

I have had the problem for nearly 10 years with it gradually becoming more obvious. I was in my early 50's when the first symptoms appeared, but did not seek an answer until it became more serious. I was officially diagnosed about 3 years ago. At that time the neurologist indicated to me that it was a benign condition and that there was little in the way of effective medication.

I have difficulty standing in one location for more than a few seconds without feeling that I am about to fall over. Most recently, I have stopped standing in church for the hymns. While I feel that I am being watched and wondered about, I would rather not collapse.

Most of the people who know me understand my situation, but I am still a bit embarrassed when in the presence of strangers who are not aware of the condition.

So far, I can still walk reasonable distances and do not have any difficulty in driving, so can still manage to get out and about. I have a cane with a folding seat that I can take with me when I go out.

Also, to cope with the mild shaking when standing I purchased a digital camera that has a digital stabilization feature so that I can still participate in my favorite activity, that being photographing my grandchildren.

[RichardS]

This is an accurate description of where I'm at, George, down to the inference that you don't take any sort of medication (is that right?). Any thoughts of where we go from here?

Richard - in Somerset, UK

The worst thing about OT is that on the exterior the person suffering from this condition appears to be normal.

I was diagnosed when my regular doctor sent me to see a neurologist. Like many of you, I was worried that it was the start of Parkinson Disease and was relieved to receive the diagnosis of OT.

I have had the problem for nearly 10 years with it gradually becoming more obvious. I was in my early 50's when the first symptoms appeared, but did not seek an answer until it became more serious. I was officially diagnosed about 3 years ago. At that time the neurologist indicated to me that it was a benign condition and that there was little in the way of effective medication.

I have difficulty standing in one location for more than a few seconds without feeling that I am about to fall over. Most recently, I have stopped standing in church for the hymns. While I feel that I am being watched and wondered about, I would rather not collapse.

Most of the people who know me understand my situation, but I am still a bit embarrassed when in the presence of strangers who are not aware of the condition.

So far, I can still walk reasonable distances and do not have any difficulty in driving, so can still manage to get out and about. I have a cane with a folding seat that I can take with me when I go out.

Also, to cope with the mild shaking when standing I purchased a digital camera that has a digital stabilization feature so that I can still participate in my favorite activity, that being photographing my grandchildren.

[Chris]

I have not posted for quite awhile as I have been trying to get on with my life with OT. I too feel that is a very accurate description George. I am getting used to the looks when I have to sit down in church or during some cermonies. Even worse when I go into some of our local stores and use the power cart to shop ( a lot easier to take my time and think). When people see me get up and walk away they are quite stunned but all the greeters now know me and so do the people at the mall. I am not taking any meds at the moment....tried Parkinson's meds for awhile (Levadopa/Carbidopa) but only seemed to make the tremor alot worse. Thought I would let my body adjust a bit and get on with my life. I will post again later. Hang in there and enjoy your grandchildren.....I sure do and they know Grandma is shaky so always find me chairs.
Chris

[RichardS]

Echoing George and Chris, I'm attending a friend's wedding this weekend. Big do, all the trimmings, all the people. Am NOT looking forward to it. Firstly there's no way I can stand in church, and then there's the reception. Do I take my fold-up stool? Look weird with full morning suit, etc. And on top of it I've just started a nasty cold.......

Wish me luck, please:-)

Richard - Somerset, UK

[Chris]

Hi Richard
I do indeed wish you luck when you are attending the wedding. Feel free to bring your stool....better to look a bit silly than be all stressed out about where you are going to sit and how long you can stand. My husband and I attended an outdoor wedding a few months ago and I definitely brought along my trusty folding director's type chair. I rarely go anywhere without it especially to a social event which involves any type of standing. I call it my "wheel less wheelchair". I get some strange looks at times but a lot of people say what a great idea to bring you own chair and be comfortable. I think they almost wish they had one too.
When we were at the wedding I stood when everyone else did and as soon as I felt uncomfortable I just sat down..... if the people are your friends they really won't care if you are sitting or standing.
Have fun and let us know how you do.
Chris

[RichardS]

Thanks for this Chris. Luckily I found a place next to the wall in church, so sat down most of the time. At the reception, I simply found a chair at the side, and sat there, and got people to come to me!

So, it worked. And perhaps it was a useful lesson: just do it, and if people don't seem to understand - tough!

Richard

Hi Richard
I do indeed wish you luck when you are attending the wedding. Feel free to bring your stool....better to look a bit silly than be all stressed out about where you are going to sit and how long you can stand. My husband and I attended an outdoor wedding a few months ago and I definitely brought along my trusty folding director's type chair. I rarely go anywhere without it especially to a social event which involves any type of standing. I call it my "wheel less wheelchair". I get some strange looks at times but a lot of people say what a great idea to bring you own chair and be comfortable. I think they almost wish they had one too.
When we were at the wedding I stood when everyone else did and as soon as I felt uncomfortable I just sat down..... if the people are your friends they really won't care if you are sitting or standing.
Have fun and let us know how you do.
Chris

[Chris]

Glad it worked Richard! I like the saying "just do it"....I will have to keep saying that to myself when things get a bit difficult and I want to back out of something.
Chris

[George Allen]

Hello Chris and Richard

First of all, thank you for posting replies to my posting.

Glad to hear that the wedding reception worked out well.

Just wanted to say to both of you " keep going"

George