Standing Time? this is how long I can stand...

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

Moderator: gloria

gloria
Posts: 826
Joined: Sun Jan 18, 2004 1:10 pm
Location: New Jersey, USA

Standing Time? this is how long I can stand...

Post by gloria »

Hi all friends,

I have had OT for 30 years but was finally properly diagnosed in 2000 . However OT is progressive with time and my standing time then was 10 minutes but currently I can stand for 15 seconds before I need to sit. This is with my medication - Gabapentin

30 years with OT-beginning standing time 10 minutes
present standing time 15 seconds

I am posting this because I thought it would be interesting to gather information about how other members of forum are doing. How long have you had OT and standing time then and how long you can stand at present?

Looking forward to your postings,

Gloria
Betty
Posts: 387
Joined: Thu Jan 22, 2004 3:08 pm
Location: Melbourne, FL

Re: Standing Time? this is how long I can stand...

Post by Betty »

Hello all.....

It has been a looooong time since I have posted anything on the forum. I thought it was time I started again. I saw this post from Gloria and thought I would add my comments.

I have had OT about 22 years, diagnosed in 2003 by Dr. Seth Pullman in NYC.

I also have a limited standing time before my tremors start ~ only a few seconds before I must sit. I take Klonopin (Clonazepam). My tremors have increased substantially since I was diagnosed; especially if I am tired. I do have a walker and find I must use it by evening. My ability to walk is also compromised at this point. I know, most people with OT find when walking, their tremors lessen, that is not the case with me. I have been told by a couple of neurologists I DO have OT, but I also have something else going on, and none seem to know what.

I continue to stay positive, am not depressed ~ even though the things I can do are very limited at this point. I realize I have given more information that Gloria suggested, so I will stop here and write more in another area.

Betty
gloria
Posts: 826
Joined: Sun Jan 18, 2004 1:10 pm
Location: New Jersey, USA

Re: Standing Time? this is how long I can stand...

Post by gloria »

Dear Betty: Thanks for reporting your standing time with OT. I've known you for a long time and when we first met your OT walking had a little different " twist" to it. It was good to have you posting again we missed you!!! Gloria

PS: Will look forward to OT'ers reporting their standing time........ it will be an interesting thing to measure our major limitation !!!! .......Thanks, Gloria
Betty
Posts: 387
Joined: Thu Jan 22, 2004 3:08 pm
Location: Melbourne, FL

Re: Standing Time? this is how long I can stand...

Post by Betty »

Dear Gloria,

You were the very first person I met who had OT. When we met, I think it was about 2003 or 2004; and the rest is history. Yes, you are right, even back then, my walking was different from most; it still is. Neurologist don't know why.

I found your website and thought I 'had struck gold'! It was a different format then and Jeff has turned it into a very professional site ~ well done Jeff!

Through your website, I have become friends with quite a few others, and have met many of them.

I will try to check the site more often and post when I have something I feel might be of interest.

Take care and stay positive ~ I KNOW you always are! :)

Love,
Betty
Julia Goodall
Posts: 3
Joined: Tue Oct 22, 2013 1:55 pm

Re: Standing Time? this is how long I can stand...

Post by Julia Goodall »

Hi Gloria,
Although I have been a member on this sight for a few years, this is my very first post. I have had OT for about 15 years now and it seems to be progressing at a fast pace in the last 6 months. I can only stand for about 30 seconds before My legs start to shake.
gloria
Posts: 826
Joined: Sun Jan 18, 2004 1:10 pm
Location: New Jersey, USA

Re: Standing Time? this is how long I can stand...

Post by gloria »

Thanks Julia for reporting how long you have had OT and your present standing time. Gloria

PS: I hope to read more postings from you in the future on the forum.... perhaps reporting when you first noticed the symptoms of OT, how long it took to be diagnosed and how it is changing your life.
MaureenB
Posts: 59
Joined: Mon Mar 22, 2010 4:24 am
Location: Southport UK

Re: Standing Time? this is how long i can stand...

Post by MaureenB »

from MaureenB
Dear Gloria I have had OT for aprox 23 years and was diagnosed 12 years ago I take clonazepam .
I don't think they help but a do not want to take a chance and stop.
I can now only stand for 5 seconds .after twisting to sit down quickly .I hurt my knee so struggling at present more than normal...Normal haha .I find I shake when concerned about my husband and I am worse for a few days...regards to all brave O.T.friends Maureen.
gloria
Posts: 826
Joined: Sun Jan 18, 2004 1:10 pm
Location: New Jersey, USA

Re: Standing Time? this is how long I can stand...

Post by gloria »

Maureen: It was nice to hear from you again and your reporting in on your standing time. I too have had OT a long time and I know how you feel about your medication. I have been on Gabapentin for at least as long as you have been on clonazepam and it no longer gives me the time relief it did in the beginning however I find that if I forget to take a dose I feel much worst and the search for a place to sit or start walking is almost immediate ..... as I reported above 15 seconds. All the best, Gloria
irish4411
Posts: 21
Joined: Wed Jul 30, 2008 10:46 am
Location: Las Vegas, Nevada

Re: Standing Time? this is how long I can stand...

Post by irish4411 »

I have had OT for about 15 years, diagnosed in 2008. I find my standing time has been rapidly decreasing. I'm especially wobbly if I have been sitting for a long period of time.
My sons wedding is coming up Oct. 1, wish m :shock: e luck. I'm already having anxiety about being able to do the "mother son" dance and general socializing.
gloria
Posts: 826
Joined: Sun Jan 18, 2004 1:10 pm
Location: New Jersey, USA

Re: Standing Time? this is how long I can stand...

Post by gloria »

Irish: Congratulations on the upcoming wedding of your son !!!!!!! Yes any event with a crowd is a challenge for us however this is a time that you might want to carry a cane not that it helps a person with OT physically but it tells people in the crowd that you have a problem of some kind and they will understand as you look for the nearest chair to sit and do your socializing. You have not given your standing time but you have had OT for 15 years so you should still be in the minute zones although maybe not many. My best wishes, Gloria
irish4411
Posts: 21
Joined: Wed Jul 30, 2008 10:46 am
Location: Las Vegas, Nevada

Re: Standing Time? this is how long I can stand...

Post by irish4411 »

I can stand for about 30 seconds before I must find something to hold onto or sit down. My condition is further complicated by orthostatic hypotension. My doctor has not been able to figure out why my blood pressure bottoms out when I stand up. I get super lightheaded the longer I'm on my feet. I passed out one time and shopping is all but impossible because I get brown outs. Does anyone else have this addition condition?
gloria
Posts: 826
Joined: Sun Jan 18, 2004 1:10 pm
Location: New Jersey, USA

Re: Standing Time? this is how long I can stand...

Post by gloria »

Irish: I'm very sorry that you are having a difficult time besides having OT. Please take care of yourself and hope your doctor finds what is causing your situation. Keep us posted. Gloria
Ann Margaret
Posts: 1
Joined: Tue Sep 27, 2016 4:26 pm
Location: Gothenburg, Sweden

Re: Standing Time? this is how long I can stand...

Post by Ann Margaret »

Hello!
I have had OT for about 15 years, diagnosed this monday (September 2016)
I can stand for obout 15 seconds before I need to sit. I have no medication yet.
Ann
Nin
Posts: 36
Joined: Fri May 03, 2013 12:09 pm
Location: Milwaukee, Wisconsin

Re: Standing Time? this is how long I can stand...

Post by Nin »

I guess I'm pretty lucky. I can still stand for about 4 minutes without holding on to something or shifting my weight before having to sit down. My legs are pretty sore by then though.
margie1627
Posts: 27
Joined: Tue Aug 03, 2010 10:06 am
Location: Eastham, MA. Cape Cod

Re: Standing Time? this is how long I can stand...

Post by margie1627 »

Hi all, I can stand about 30 seconds. I take 2700 mg. gabapentin and feel it helps some. I walk about 3 miles a day
as often as I can--3 to 4 times a week and DEFINITELY thinks it helps both physically and emotionally (endorphins do
their work). I have had OT for about 10 years and am 86. I live on Cape Cod and would love to meet any fellow
sufferers on the Cape.
Post Reply

Return to “OT- DISCUSSION, Questions, Thoughts and Advice.”