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

Moderator: gloria

By golfnut
Media articles report about Mrs Merkels tremors and I've seen one of the videos where she's standing and having severe tremors. One article mentioned OT - and it sure looks like it to me. While I regret her situation I'm hoping she will tell the workd what ails her and it it is OT, that would mean a lot for this obscure syndrome!

Worth following I think.

By Andrecat
Also, I hope commentators don’t characterize her as mentally deficient because of tremor; unfortunately, the videos almost imply that. As an OTer, I can see her fighting the tremor - her hands in fists and the determination in her face not to shake. I hope whatever she has is diagnosed soon, so she can understand, and the guesswork is taken away from contentious commentators.
By Donna436
I'm going to write to her and include two printed research studies. What struck me is that once she began to walk, her walking was smooth. OT is so obvious to all of us, and hopefully to her physicians. This could be an opportunity to bring awareness to OT if she is willing to say what she has, or knows.
By Denise01
Knew she had OT as soon as I saw her shaking the second time and third time confirmed it. Just heard Dr Sanjay Gupta on CNN mentioning OT as diagnosis. Sorry that she may have it, but this could bring more attention to our problem and we may find that it is not as rare as they say it is.
By Photocatseyes
Hi all, this week I saw Angela Merkel on CNN and heard Dr Sanjey Gupta. The heavens opened. Sort of. I had no idea that the shaking was an actual thing. I recognized it immediately, and for the first time also found out that there is something wrong with my legs, that it's not only in my head. This might become a long post. So bare with me. For years I had the sensation of having no balance, or needing a wall or something to sit on. I silently moved a chair next to the shower, so I can sit to dress. Trying to get my pants on on one foot like I use to be able to do ends up jumping around like a clown in a very bad way. It started pretty innocent, I think I had my first weird things around 2003, when I first noticed that my balance was of. Over the last years it has gotten worse, although I always (since I was a young kid/woman) preferred doing things sitting. Cooking, ironing, can't do anything standing up. Since the last four/five years I have come to the point where I can no longer photograph as a wedding photographer because I shake too much standing. And it's hard to log a chair with you at weddings. I like to do night photography, but that has come to the point where I tell my shooting buddies that I need to stay close to the car, and have my set up ready by the time it gets dark. After dark I am like a drunk bat. No balance what so ever, and becoming a liability to others. I don't hike anymore. Since a couple of months ago I started going to the gym because I thought that I was being lazy, to experience that treadmill is dangerous. At times I went back faster than foreward, with only laughable results. My solution is the bike with the back support, where I can sit in. I don't know what it is called as I am flemish speaking. I am a Belgian, married to an american husband, living in New Mexico. So with the sitting bike I now go five days a week with the goal of building strength in my legs. That was before I saw Merkel shaking. I will continue to go to the gym, because it probably can't hurt. In 2004, a couple of months after we moved to the States, I collapsed and was taken to hospital. It was due to dehydration, but at that time I told the attending that I had balance problems and she got me an MRI. With no results what so ever. It came back totally normal, which made me think even more that it was all in my head. Seeing Merkel and browsing this website is like a treasure trove. I see all my problems neatly spelled out by other people, and in better words than I could ever have imagined. Standing on a chair or ladder has become impossible. Funny and annoying thing is that I watch my weight now since going to the gym, it takes me 15 minutes to get a good reading because I can't stand still on the frigging scale. As it seems to be a general consensus for now that there is not really a working cure, I will keep silent about it, till I am more sure. I downloaded the iphone app and will try to make that one work so I can see how bad the tremors are. I am not prepared to start with the few medications there are now as I had Graves when in my 40's, and need to be careful with kidneys. I was on dialysis for 3 months but lucky enough my kidneys picked back up. Hurraah. So if I now could find a non medicated way to deal with the tremors that would really make me happy. I do travel to visit my family in Belgium, standing in the row in airports is hell. So I have a rolling suitcase I can sit on. It might get to the point I simply take a wheel chair. Although that makes me feel guilty because nobody sees anything strange when they look at me, I look perfectly healthy. Anyway, I will continue browsing this website, hope nobody is bored to death by now. I sit nicely behind my computer, typing away... Should I thank Angela Merkel?
By LeslieBecher
I have it too. Take a wheelchair now when I fly. Standing in line for security is impossible. But I can walk so people look at me weirdly if I get up out if the chair to go get a bottle of water like I am a faker.
I am sure this is what Angela Merkel has. Just give her a chair! That's all. Standing still is not a possibility.
But anything else is fine!
By Lake of the Woods
I was wondering if anyone else who has OT has experienced full body tremors? I have had OT for 16 yrs and have not experienced this but have heard from a couple of OT people that have had this happen.

If you have had this happen, please describe briefly the situation, long long it lasted and what you did to remedy it?

By Theresaann
Yes. I have those awful tremors! I have had, recently, three ACUPUNCTURE sessions and the tremors in my arms and hands actually went away for two full days after the second and third session.
By DancingThruLife
Hi Peggy,

I experienced full-body tremors before I was diagnosed. Now I know that I need to sit or lean against something so that the tremors do not get 'out of control'. Those full-body tremors is how I first knew something was wrong. I was giving a presentation at work and all of a sudden my whole body started to shake. I had no idea what was happening. And then I sat down after the presentation and I was fine. I knew it wasn't nerves, and since it was an isolated incident, I sort of blew it off. A few months later, it happened again. I was late for a cookout and was rushing around and got a little stressed and started to shake. Once I sat down and had something to eat, I was fine. After conferring with my GP, she sent me to a neurologist. He did an MRI. He said I was 'fine'. Thank goodness my GP stayed with me on this one. We thought maybe I had hypoglycemia, because "once I sat down and had something to eat", I felt better (we had focused on the wrong part of that sentence). Once we ruled out that it wasn't low-blood sugar, she sent me for a NCS/EMG. Results came back negative...we all know the reason why...b/c I was lying down when they did it. GP then sent me to a motor coordination specialist who diagnosed me with Essential Tremor. I disagreed. I went back to him a year later after seeing a three-sentence blurb somewhere on the Internet about OT and he agreed with my diagnosis. I wish the best for Angela M. If she has OT and is willing to talk about it someday, it may help all of us.

By Betty
Hello Peggy,

I have intended to get in touch with you for some time now, but just don't get around to writing. After reading your post, I decided it was time to write.

I do have full body tremors and have had for several years now. I have had OT for over 25 years. When we last saw one another, one would never know you had OT, but I guess time has made a difference; I am sorry! I had hoped you would be one who would always be able to do all the things you had ever done.

Anytime I try to stand, my whole body tremors and it is very noticeable. I used to be able to cover it up, as we all try to do at first, but now I am unable to do that.

You asked what can be done to stop or relieve whole body tremors; I can only speak for myself, but I have found nothing to get relief except sit. I use my walker at all times now. I think, as Gloria has said, years of having OT and age take its toll.

I do wish everyone on this Forum would write to Angela Merkel, ask her to be checked by a neurologist, have the proper testing for OT and if she does have it, she could be the one to bring attention to our plight. Just think how much attention Parkinson's got when Michael J. Fox told the world he has it. We need a "known face" or "personality" to bring our cause to the forefront.

Take care of yourself, Peggy; I think of you so often.

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