The Orthostatic Tremor Forum (archive)

The other day for the first time I had a problem while walking for split second my right leg felt like it was going to give out and I felt a little spacial disorientation. It took me a long time to realize that the feeling of falling was not comming from my head, but my legs when I was standing. Its when the muscles in legs started to hurt that I realized my legs were like jello when I was standing but fine when I was walking or running. I think that because I tighten my leg muscles so much to help my self stand still that if I dont pay attention when I am walking slow and relax my legs to much I can have this sensation that my leg will give out, but I don't really understand. I think the muscles are so tight, but they are very strong. Anyone agree.

I know the feeling you experienced when you tried to start walking. I have been used as a "study" for OT. This involved being videoed and i was asked to stand as long as i possibly could. This meant i stood for longer than i usually do before i start walking or sitting. (i was way out of my comfort zone but am so terribly obliging!!) My leg stayed where it was by the time i wanted it to move and when i did move it the movement was spastic type. I dont know how this would help you but the doctor just reached over and moved the leg to get it going and made a comment to himself which was "frozen eh?" It only happens when i am trapped somewhere that means i have a more than usual standingstill time.

Hi!
I have exactly the same experience when forced to stand for longer than I am comfortable with. I have really only got into this situation two or three times (where I haven't been able to sit, lean or walk away), but when I have, it's as if my leg muscles have gone into spasm - and I'm then unable to walk away without a great deal of difficulty. I find it quite scary, so I do my utmost not to be caught out in a situation like that! Also, when I'm having to move very slowly (eg through a crowd), I find that my walking becomes very jerky and uncomfortable - although normally I have no trouble whatsoever with walking.
Lynda

Hello Lynda and all others
I read about how you have trouble moving after standing still for more than the usual (allowable) time. Lynda also stated that this movement of the legs is made worse when in a line which makes it difficult to move at your own pace. I can walk well as long as i walk at the speed i wish. I have noticed though over the years that when i am waiting to slowly walk into the movies my legs become jerky and tremulous. This feeling is getting progressively worse. I used to joke with my family and friends that i had only two speeds stop and go but, now its no joke as I have lost the ability to go slow. This is one of the reasons i tell my neurologist that the condition is progressive. He makes no comment.

You all have described the first and formost symptom of OT. The fact that our legs are not able to maintain us in a standing still position or a slow paced movement will bring on this event as well. The event being the contraction of our leg muscles and when they are examined physically they are very hard to the touch, more so than people who do not have OT. When this does happen to us (frozen), it is a CHALLENGE to start walking again but once we start a good walking pace it will force the muscles to work in a more comfortable mood. I generally breath deeply when I'm in the process of trying to walk again this seems to relax some of the built-up tension this phenomena has caused. Input like this is so wonderful because all presentations of life with OT will help doctors who do not have enough OT patients for comparsion to know the true picture of our disease. All OT patients must keep working together to promote understanding of our world. Gloria

Hello everyone!

I haven't written in some time, but check the FORUM often. I saw this entry and replies so I thought I would add my experiences.

I, too, have problems trying to walk after 'trying' to stand for even a few moments. I must find some place I can either hold on or lean against in order to maintain my stance. Leaning is best for me; but when I begin to feel my legs becoming heavy, weak and unstable (this is usually less than a minute for me), I will excuse myself and 'try' to walk to a place to sit.

Many times, I try to stand too long and it is almost impossible for me to get my legs to start to move. It takes every ounce of energy and will power I have to move and when I do, my balance is off, my gait is spastic and my whole body is shaking like a leaf. The worst times for me are standing in a line (such as a store) or buffet. There have been times (if my husband is not near), I have had to ask someone to help me to a chair; this is usually in a social situation, and now almost all my friends know of my condition, so they are all most willing to help. If I am alone, I do the best I can, which isn't good and not at all easy! I, too, feel I am progressing at a more rapid rate than I expected.

Because I must 'grip' with my toes in order to keep my balance and try to keep my body still, I experience foot and leg cramps ~ I feel this is also common. You all know how exhausting this is on the mind and body, so I feel a great amount of fatigue most of the time. I don't think I am alone with this problem.

So, each of us must try to support one another and give a very 'special' thank you to Gloria for putting this website up so we can communicate with one another; and continue to hope one day something will be found to help. We are all in this together ~ we must take one day at the time ~ and try to keep a positive attitude, that is what I am trying to do!

Betty

Hello I also have problem stand in one spot I am for ever holding into something I work 20 hrs a week standing in one area I have been for long time trembling legs but Dr thought was ET only but last week was told differnt!!! two month ago I could notcope with my legs I have to do somthing, My employer know about i am sick but the problem they donot see it?? so is hard from them to understand me,that is not the only part of my body it tremble!!I also have ET. The worse i got I could not sit with my legs cross on the other becouse it will fall so is this happen to somebody??. I move all the time I get tired of the same
I also out of balance. thank you Gloria for let me send messages about me to compere with other person bye for now Porotin

Hi All from Virginia!!!!!
My legs are really giving me a bad time, so I reread all of your input in on legs problems and feel not alone is pain, weskness, heavyness. Leg muscles were check last Dr. visit last month, strong enough also checked nerves, they seemed OK. You friends are the only ones who understand.

Does cause frustrations and depression but, we have to Keep On Keeping ON.