The Orthostatic Tremor Forum (archive)

Hello everyone,
I have just heard from Dr. Torres-Russotto in Omaha and he has one final approval to get hopefully this summer and then he will be ready to commence a study on OT people starting hopefully this September.
Because of restrictions regarding confidentiality he is not allowed to give details until this is approved but he did say this:

- Anyone with OT is welcome to participate
- You will only have to attend one time
- It will take about 3-4 hrs for each participant and will involve no machines and is non-invasive.
-
As soon as I know any more details I will advise you. I wanted to give you as much notice as possible that this will be happening. In the meantime, if you think you might be interested in attending please notify me at pwhitta@bell.net so I can start compiling a list. I told him that I would do this and he said that would be great.

Gloria and I had just been discussing where to have our next OT meeting when I heard this news. We were initially waiting to hear the location of the NORD research and thought we would plan something in conjunction with that but since it is overseas that will not work out. We are now tentatively planning to have the meeting in Omaha if things go as planned with Dr. Russotto’s study.

As mentioned, I only know a limited amount at present but I wanted to give everyone as much notice as possible what is happening. As soon as Dr. Russotto gets his final approval he will contact me and I will be able to provide more details. He did introduce me to his secretary via email and I know she will be able to assist me with accommodation, meeting room etc. once we get down to planning a meeting so that should be a big help.

Please advise me if you are thinking of coming and also if you will have a companion with you so I can keep a list of the number of people when planning a meeting room. It is hard to plan right now of course until I know more and also until we have the number of OT people participating but I can get started on this.

Also, it sounds like you might be able to take part in the study even if you couldn’t make the date of the meeting, whenever that is decided.

Here is a link to a video of Dr Russotto discussing OT Link

Peggy

Great news. Rosemary and I would be most keen to attend the meeting and I will certainly want to be part of Dr Russoto's study. Thank you Peggy and Gloria for all the work that you do behind the scenes. We all benefit so much.

Hi Peggy,

I haven't checked all of the forum as often as I should and just found this today. I was thrilled to learn Dr. Torres-Russotto is so close to starting his study on OT, perhaps in September.

Peggy, I would love to participate in this study; one reason is I have had at least three neurologists tell me I indeed have OT, but also have something else going on, yet they have no answers. Perhaps it would give Dr. Torres-Russotto a different avenue to check.

Paul and I would come together; I will send you a personal note as you requested.

Thank you Peggy and Gloria for all your hard work.

Betty

Hi Peggy,
It's so nice to know that things are starting to happen. I would definitely like to participate in the study. Besides, I've never been to Nebraska. Should be interesting.
Rita

Good news about an upcoming meeting. I would like to be in the study too! Thanks for all the help Peggy and Gloria have done for all of us.
Lorie M

Hi everyone
What great news I will be there for sure !
Keep Smiling
Mike

Hi Mike,

Hope to see you there; long time ~ no see!

Betty

Hello all :

This is such good news, here is the opportunity for OT people to meet other OT people coupled with the chance to participate in a research study if you choose. For years I continue to get letters from people who would like to meet other OT people. They feel alone with our problem, well this is a chance to do just that. Peggy just posted the news from Dr. Torres-Russotto and set up a tentative OT meeting and almost immediately we heard from some of the people who have attended our previous meetings. They treasure the time being with others who really “UNDERSTAND”. They accept the challenge that traveling is difficult for all of us but the reward is price-less! Come join your OT Family!

Love good news, Gloria

Gloria, you are so right. There is nothing like being among other OT people who do understand exactly what we are feeling.

See you in Omaha!

Betty

Hi all
I am so looking forward to our next meeting.
Great to see friends we met before and to
meet new ones.
Stella

Oh I wish I could attend and participate in the study. I know it is hard for everyone to get to Omaha for it and it is impossible for me. My daughter who would travel with me will be in China with my granddaughter and she is the only one that could accompany me. Too many change of planes (which I have done in the past alone) but now I am 84, alone and need someone with me. Just wish the next time, if possible for me, it could be in a direct airport, i.e. Chicago, New York, LA. No change of planes and easy access, if that is possible for us. But that is for another time and I am grateful that the doctor will do a study for all of you that I would love to meet and also participate. I am anxious for the follow up and hearing from all of you about the study. So wonderful and enjoy!

I just had an appointment with Dr Torres-Russotto last week. He is a wonderful caring man. I would love to attend the meeting in Omaha. Please let me know when this will be, I will probably have a family memeber with me also.

Thanks everyone....

Hello Lydia,
If you read all through the postings on this you will get some of the answers to your questions.
I have emailed you privately - I hope you get this. If not, you can email me direct at my email listed above. TENTATIVE dates are Sept. 14,15,16.
Peggy

Hi! Lydia,

How good to hear that you were diagnosed by Dr. Russotto and you will be coming to our meeting and research study we are planning to have with Dr. Russotto in Omaha. I read your other posting about how you are doing as much as possible to retain mobility by walking, even training for a half marathon. We have another OT friend Helen from Canada who has participated in half marathons and you will be able to meet her at our meeting and have a good chat over your walking skills.

Look forward to meeting in Omaha, Gloria

Eager and willing to travel to Paris, Perth or Nebraska to help the research. Please let me know who I need to contact to volunteer my trembling body. Thanks