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

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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 »

HI! Nin & Margie: Nin: thanks for reporting in. Your being able to stand for 4 minutes sounds good to me and when I was your age I too remember being able to stand for minutes like you instead of the seconds of my present age. Gloria

Margie: We are both 86, you take 2700mg and I take 2800 mg gabapentin. Difference.... you have had OT for 10 years and I for 30 + years. You can stand for 30 seconds and I for 15 seconds range that seems to be a norm for our age. What was your standing time at the onset of your OT 10 years ago? 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 »

While I find I can stand for only a short time. I try to find something for support such as a wall or post. A newer (and very disturbing) development for me has been when I'm standing, I can't lift my feet. For example, at my son's wedding, we were having the mother son dance (I was dreading) and I was not able to pick up my feet to move around the dance floor even though I had my son to lean on. In the past once I got moving, the faster I walked the more stable I felt. I guess I can only describe my legs as wooden and immobile. Has anyone else experienced this? Any suggestions? I just feel like this condition has progressed rapidly in the last 6 months. I'm 62 years old and I want to fight this as long as I possibly can.
podhorodeckisz
Posts: 15
Joined: Thu Sep 09, 2010 9:40 am
Location: Sandbach, UK

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

Post by podhorodeckisz »

Hi. I was diagnosed with slow OT in 2010 but started tests, on what was then my mystery condition, in 1988. I am now 47. My shakes start at 20 seconds and gradually worsen reaching their max by 30 seconds.
renaely
Posts: 33
Joined: Tue Nov 11, 2014 10:14 am

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

Post by renaely »

irish4411 wrote:While I find I can stand for only a short time. I try to find something for support such as a wall or post. A newer (and very disturbing) development for me has been when I'm standing, I can't lift my feet. For example, at my son's wedding, we were having the mother son dance (I was dreading) and I was not able to pick up my feet to move around the dance floor even though I had my son to lean on. In the past once I got moving, the faster I walked the more stable I felt. I guess I can only describe my legs as wooden and immobile. Has anyone else experienced this? Any suggestions? I just feel like this condition has progressed rapidly in the last 6 months. I'm 62 years old and I want to fight this as long as I possibly can.
My legs get stiff like that. I guess I'd equate it to hard rubber. When it happens I can't control areas around my joints, they just "drag". When it started to happen with my feet I think the Dr. said it was called foot drop, but she couldn't explain what was up with my hips and knees. I'm already hyperreflexive so they thought it had something to do with the reflexes stiffening.
gloria
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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 & renaely: This really is hard to understand because this has been an experienced for most of us with OT when we do anything standing and requires a reaching upward mode..... for example trying to give someone a greeting hug or reaching upward dancing or changing an over head light bulb etc. all things our legs cannot provide us with the proper footing. It is all part of our OT package and I have found all I can do is to anticipate the things to avoid the best I can and reduce frustration. The complication of other health issues always makes it more difficult to conscentrate on a proper direction of coping as well. Gloria
Frankie
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Location: Cross Plains, Tn
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Re: Standing Time? this is how long I can stand...

Post by Frankie »

I was just diagnosed with OT on Oct. 18th, 2016. I already can only stand for a few minutes until I need to sit.
Take care everyone
Frankie
Nancy Linthicum
Posts: 9
Joined: Sat Nov 05, 2016 11:00 am
Location: Green Valley AZ

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

Post by Nancy Linthicum »

I was diagnosed with OT less than a year ago by an EMG and my neurologist. As I think back at least 15 years ago while rving and being on tours where I had to walk to the back of the group and circle around while listening so that I could participate. I remember desperately looking for sitting places and even found one by sitting uncomfortably on an anchor! Then I started leaning on my husband. Once I even held the hand of a familiar-sized male and we were both surprised when I looked up that he wasn't my husband! Finally I have an answer and that at least begins to make sense.

The few medicines my neurologist has prescribed were intolerable to me. I felt like a zombie and slept for many more hours than normal. I seem to be very susceptible to any even small dosage tranquilizers, which I seldom take. I occasionally have vertigo and small amounts of meclizine put me to sleep or make me very drowsy. I'm not good on boats

Anyway to answer the question: I now am able to stand for about 30 seconds before trembling and feeling increasing desperation to find a sitting place or something to lean on or hold on to. I feel that this time is already lessening by the month. I am 76 and recognizing my limitations more and more. I often use a cane and survived my latest travel experience by having a cane chair. I appreciate shopping in stores that have shopping carts and that really will determine my future in-store purchases .A scheduled Christmas vacation flight is already upsetting me as I ponder whether I have to ask for early boarding with a wheelchair or jump into line on SW airlines at the last minute and hope we don't have to wait in the walkway before boarding. I am self-conscious about this crazy inability , only to walk briskly away as if it was all nothing. I find holding the cane at least an indication to others that I may need a chair or help thru queues. It's rather maddening, but I am glad to have found others here that understand the frustrations. Thanks for this.
gloria
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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 »

Nancy: Always ask for a wheelchair as soon as you arrive at an airport and explain if you can board early. The person that brings you the wheelchair generally takes you on board early. When you arrive at your location they will generally have a wheelchair waiting for you but you might check before landing to make certain. Gloria
Nancy Linthicum
Posts: 9
Joined: Sat Nov 05, 2016 11:00 am
Location: Green Valley AZ

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

Post by Nancy Linthicum »

Gloria, Thanks for suggesting getting the airport wheelchair. I just wasn't ready to admit this "defeat" of acting as "normal " as possible, especially since I can still walking briskly thru the airport with my cane for stability. (Until I stop, and then I can't cope.) Still in denial I guess.
Fiona
Posts: 8
Joined: Mon Dec 26, 2016 6:27 pm

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

Post by Fiona »

I have just been diagnosed, and showing symptoms for just over 12 months. I can stand without problem for about 30 seconds, but it all goes wrong very quickly after that.

Nancy, I just experienced that in the airport. I waited (seemingly forever) to be the very last to board, staying seated within view of the gate, and then very last off the plane. I felt embarassed because I waited on the plane with the little old lady with the cane!
Kris
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Joined: Wed Dec 28, 2016 4:34 pm
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Re: Standing Time? this is how long I can stand...

Post by Kris »

I can only stand for 15 - 30 seconds before I start looking for somewhere to sit down or start doing a slightly weird 'circular' walk - some people start pointing out where the toilets are at that stage!!
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 »

Kris: Thanks for the good laugh !!!!! [ I start looking for somewhere to sit down or start doing a slightly weird 'circular' walk - some people start pointing out where the toilets are at that stage ]

Love your sense of humor...... something all OT people need plus finding ways at fighting back at OT in our lives. Gloria
magnbud
Posts: 23
Joined: Fri Feb 06, 2004 5:33 pm
Location: Oklahoma

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

Post by magnbud »

Hello Gloria and all of my OT friends. Happy New Year! I believe I am one of the fortunate ones as far as standing time goes. I have had OT about 13 years. With Neurontin, I can still stand for several minutes. I don't feel like it has progressed in several years. I do have an occasional bad day when I tremor more. It is noticeably worse if I forget to take my Neurontin.
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 »

Hi! Maggie : Your standing time is still very much within the norm in minutes for your length of time with OT. I started out in minutes about 30yrs. ago but now struggle with dwindling seconds. Thanks-you for your always active response with all things OT. Gloria
Grammiex4
Posts: 11
Joined: Wed May 19, 2004 8:21 pm
Location: TN

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

Post by Grammiex4 »

Hello Everyone: I just received the notice regarding the September meeting in Omaha! I am looking forward to the meeting, study and most of all seeing everyone again. I was able to attend the last meeting and it was such a blessing to meet others with OT. I had self-diagnosed my condition through reading information on this site about 15 years ago. I was finally medically diagnosed by Dr. Torres at the last meeting with the iPhone app! My ability to stand varies throughout the day and the situation. I am much better in the early part of the day and can stand 3-4 minutes. As the day progresses that time may go to 2 min. or less. If I am in a stressful situation the time may be even less than that. I am always looking for somewhere to sit or something to lean against. My husband has a good strong arm, too, and helps me a lot. I find when standing for too long I get that "frozen" feeling and have a difficult time starting to walk again without assistance. I take Gabapentin 300 mg 2x daily and Clonazepam 1 mg. 2 x daily. I feel these meds help me as I can tell if I should miss taking them. I've been taking them both for many years.....at least 10.
Good to hear from so many people and it looks as if we have many more diagnosed with OT. Hope to see many of you in September.
Patricia Ryan
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