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Moderator: gloria

#6311
Hi,

Thank you for bringing this topic up. The article in the Post is discussing POTS, Postural orthostatic tachycardia syndrome. We have POT, primary orthostatic tremor. They are different disorders. As if it's not bad enough having a rare disease that many people have not heard of or cannot understand....we also have to contend with a disorder that has a similar name! When I talk to people about my condition, I refer to it as OT or orthostatic tremor, b/c in the past, a couple of people asked if I had POTS.
#6312
Thank you so much for the correction. I too was put on the wrong leg, no pun intended. I did wonder though. I called my gp yesterday and she had heard about it, but related it completely to blood pressure, which is not so in my case. I have no bloodpressure probs, if at all, it would rather be high than low. It occured that the writer of the article had far more severe problems.
I am starting to refer to it as OT also, but not a lot of people have heard about it. Maybe I need to contact the Lily and correct or add to their information... Thanks for the input!
#6313
I attempted to get a rollator from Medicare. The Nurse PRACTITiONER in the NEUROLOGIST'S office noted the condition as "orthostatic hypotention" - and friends wonder why I don't have much faith in NPs. (I am an RN.)(Evidently, Medicare doesn't even have a catatory for OT.) I try to tell anyone who will listen about the condition, just to make others aware. Today our nephew and wife from Maryland visited us. (We live in Massachusetts) They said that they have a friend who has OT, but only diagnosed as Essential Tremor. I believe there isn't much research related to OT because there is no money for the pharmaceutical companies to explore medications for relief. (We do need more participation for our support group!!!)
#6318
I live in the Boston, MA area. I am constantly teaching family, friends and strangers about OT. When I applied for a HC placard for my car my physician used one of my many diagnoses (shortness of breath) filling out the application. She was sure the Motor Vehicle Dept. would not have OT on its list of diagnoses.
#6319
I went through you-know-what to get a Handicap Permit for parking in Massachusetts. The neurologist was kind enough to send it back twice more. What can we do to make our rare condition known? I mean that question. I tell anyone who will listen about it. (See my comment above about trying to get a rollator, with the NP putting down "Orthostatic Hypotension". I'm an RN (with various national certifications) and I get embarrassed with the foibles of NPs.) Again, I feel that there is no money in it for the pharmaceutical companies.

I have asked on this website a few questions at various times and no on has responded. E.g., is anyone affected by overhead lighting in stores? There are certain retail stores that I have to avoid because when I enter them my tremors become twice as bad.

I have asked if anyone has tried swimming as therapy, and if so, did it help?

If we don't support each other as members of this support group, there is no point in having it.
#6321
I think this group has sadly enough reached the end off it’s life. Though it is the only group that I know concerning OT. The information given is of tremendous value, and we need information, but as so many groups before, they reach a phase of not getting enough members and older members talked out. So the group dies. It happens to a lot of groups. I wonder if a facebook group would gather more interest. Just wondering. To answer your other question about the overhead lights I do not have that problem. If any light, the dark is a bigger enemy than light. I do stumble a lot more when it is dark than when i have a little light. I am not sure how light could influence your muscles. Maybe ask your gp if that sounds plausible.
#6324
There is a Facebook Page which has over 600 members. It was established several years ago by a young Australian woman and its membership is constantly growing with people from all over the world. The Dutch also have their own site. You can ask anything on the Facebook page and there always seems to be someone who can give you an answer on their experience. It is a closed group so you will have to apply to become a member.
Lynette, Kaikoura, New Zealand
#6330
The two groups on Facebook are great. I participate in both. The Melbourne, Australia based group is very active and friendly. I read the transcripts and watched YouTube videos from their April 2019 conference. Great speakers: Neurologist, Physical Therapist, and a Neurologist from Nebraska who spoke of current research.
I think all sites, including this one, are very beneficial. It helps tremendously to know there are others out there in many countries.
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Thanks so much,I will check Amazon.😀 Bevnix