The Orthostatic Tremor Forum (archive)

To our OT friends, families and caregivers all around the world,

2012 has been a productive and exciting year for Orthostatic Tremor!

With donations from the OT community to the National Organization of Rare Disorders (NORD), two grants were awarded to research OT in Australia and Paris.

Also, this past October, 23 of us with OT, along with many companions met in Omaha to participate in Dr. Diego Torres-Russottos first clinical trials on OT at the University of Nebraska Medical Center.

All of us who participated recommend the experience! We reconnected with OT friends that we had met at previous meetings, and made new friends as well, sharing our challenges, concerns and coping strategies.

A busy year indeed, but there's more! The Canadian Broadcasting Company and Erik White created a documentary on Orthostatic Tremor that was broadcast throughout Canada and on the internet for the entire world to hear.


Wishing you every happiness this holiday season and throughout the new year,


Gloria, Peggy, Helen, Maggie, Pat, Betty, Myrna, Lori, Patty, Mike, Stella,
Rosemary, Rita, Cindy, Stella, Morris, Beth, Chris, Wini, Harriet, Sandy,




Learn how to donate to the NORD OT Research Fund at the Orthostatic Tremor website http://www.orthostatictremor.org/donate/index.html

Or, you may donate on the NORD website- https://www.rarediseases.org/about/supp ... -donations It is important that you click on the Research Fund button and choose Primary Orthostatic Tremor from the drop-down menu.

Hello everyone,
I'll tell you - Jeff is better than any "paid" employee. We are sure lucky to have him!!

Happy Holidays to everyone - 2012 was indeed a big step forward for us in many ways.

Sincerely
Peggy

Would like to wish everyone a very Happy Christmas and
a Happy 2012
Hope Santa is good to you all.
Peace and Joy,
Stella

HAPPY NEW YEAR ~ 2013!

I hope the New Year ~ 2013 ~ will bring good news for all.

Stay well and stay positive; it will happen!

Betty

Hi everyone.
I really meant to wish everyone
A VERY HAPPY 2013
Lets hope we can have another productive year.
Omaha was a great experience.
Regards to all my O.T. friends
Stella

Happy New Year to you all. Thank you for your continued posts. I really enjoyed listening to the radio broadcast and reading the "feedback" from Omaha. Certainly feel very blessed as I've been able to discover, "gabapentin" from your comments and work through a few other medications to find what worked for me. I'm fortunate that I found a psychiatrist that would listen to me and read some of the information I printed out from this forum regarding what was and wasn't working for individuals and that she didn't think I was imagining things.
I was diagnosed about 10 months ago on the first go around. Unfortunately, that neurologist did not seem eager to work with me and I'm in search of someone in the Houston, TX area that may have experience with OT. The well-known doctor I went to said, "I was his first case".
So far, I'm managing really well with 3x daily, 300mg gabapentin. Since I started the medication, my tremors are not occurring as frequently, and seem to be under control as long as I stay calm, and not in a hurried state. I feel optimistic for the future. Hopefully, I'll be able to participate in the next meeting, and/or research later this year so that I may put a few faces with the names.
That's all for now and I hope you all have a wonderful 2013! Mary

Hello Mary: Since you are looking for a neurologist in the Houston area I suggest that you try Baylor University Department of Neurology and ask to see someone who has had a number of OT patients. I do know that Baylor has done research on OT. Good luck, Gloria

Hello Mary, I have gone to Dr. Joseph Jankovic at Baylor at his Movement Disorders Clinic for ten years. He is very knowledgeable and has done research on O.T. There are a number of other doctors in the clinic as well. You would get fine care there. My best to you, Maggie