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 margie1627
#5196
I'm wondering if the trial using magnetic stimulation is underway and if anyone is enrolled in it.
By shakeylady43
#5198
MaryAnn from Il here. The trials will be the middle of MAy or the end and will last 2 days. This per info I got last week from We Hu. They had requested my mailing address 2 weeks ago. No other information, which there was. I would like to find a cheap flight down to Florida.
By margie1627
#5201
Thank you Mary Ann, that seems strange to have a 2-day clinical trial. I will
be interested to hear results. Margie
By admin
#5204
MaryAnn

What was the process to become part of the study? Were you previously a patient at the University of Florida?
By shakeylady43
#5205
Here's a little update from me: When I first heard about the trial through this forum, I got on line and asked to be able to participate. Later I was asked to send in all medical records I had on this diagnosis, which I did, and that was last year. They acknowledged they had received this. I contacted them in early winter to find out "something" and was told the "equipment" to do the testing was going to arrive the next week. In the past month I was asked to send them my address, which I did. I then sent a request for information on when the trial would be held and for how many days and that was when I received this message: "The study will take 2 days. We do not have dates for study yet. Likely in the middle or end of May".
I know not if I am part of the trial or who else might be involved. They are not very forth coming with information. I do know Larry, from Indiana, has asked to be a part of the study and he has received LESS information than I. I just know my OT is getting worse, I do not tolerate any of the 4 drugs I have been prescribed and I am anxious for this trial and be a part of it. As my family Dr. said, "what do you have to loose, go for it". I will post if and when I learn more. MaryAnn from IL. Had a phone call from Florida yesterday May 3. They are still waiting on equipment. I was told they were hoping to get participants close to Greensville...don't know where that places me in the study. I was told that I should receive more information next Monday. Does anyone know anyone with OT inn Florida who may have been selected for this trial?
Last edited by shakeylady43 on Wed May 04, 2016 9:01 pm, edited 3 times in total.
By admin
#5207
Hi MaryAnn

Thank you for the additional information. I can imagine that the number of tangents that need to be put in line before a research study begins would be challenging. Legal, hardware, personnel, facilities, participants/controls, and internal reviews...

Indeed there was another project included in the first NORD grant that was not successful in getting all of the approvals. It would be good if the process was to gather people and test. I would guess the researchers would be very happy if that was the case, but unfortunately the world requires structure and paperwork. And that is probably even more true when it relates to research that requires a very controlled environment to determine and qualify the results.

Hopefully they will do a better job with their communication, so that everyone has a better idea of where they stand. Especially for the people are volunteering to participate. I am glad that there are researchers interested in OT, and hope that more will continue in the search for new therapies, treatments and a cure.

Thank you again, and wishing you all the best,
By Angela
#5237
admin wrote:Hi Margie

I don't believe that the research has started, but I have not spoken to anyone with the research team. The updated notes on the clinical research say that they are still recruiting participants.

http://bit.ly/rTMS_OT_ClinicalStudy
In regards to the Fl. Trials, I did contact the Dr. Who was on the contact list by email. I told him that I would like to partisapating in the study. He responded by email, and said that they were still working on on putting it together. But if I was in the area, to feel free to stop in.... This was back in April.

Angel Pampalona
Rochester, Michigan
By Angela
#5238
Angela wrote:
admin wrote:Hi Margie

I don't believe that the research has started, but I have not spoken to anyone with the research team. The updated notes on the clinical research say that they are still recruiting participants.

http://bit.ly/rTMS_OT_ClinicalStudy
In regards to the Fl. Trials, I did contact the Dr. Who was on the contact list by email. I told him that I would like to partisapating in the study. He responded by email, and said that they were still working on on putting it together. But if I was in the area, to feel free to stop in.... This was back in April.

Angel Pampalona
Rochester, Michigan

Yea, I got the feeling that they were having trouble getting the whole thing together. Thanked me for contacting them, but did not ask for any other information from me. Only said if ever in the area, feel free to stop by!! Thanks for responding, As the other lady said, I feel like I'm getting worse by the day, so hoping to find something that works!!! :)
By Stepford
#5634
Hello everyone. I am new here and this is my first post. My father has severe OT and is enrolled in the University of Florida research project. Next week he will undergo transcranial magnetic stimulation. I know some other people on this forum are interested, so when he is complete with the procedure, I will let you know how well (or not) the stimulation helped his OT. If there are any questions you would like me to ask him about the procedure, I am happy to pass them along. Thank you!
By Stepford
#5636
Thank you. Please let me know if you or anyone else has questions about his procedure. I am here to help as much as I can.
By Nancy Linthicum
#5637
Stepford,
Thanks for posting to the forum. When is your father's procedure? Is it invasive requiring surgery or maybe an out patient procedure? I wish him answers and relief. Keep us informed as you can. Have many questions - can you elaborate on what is done and what results your doctor has had or hopes for. Prayers for him and you. Glad you've shared with us.
Nancy L.
By Stepford
#5638
His procedure is next week. It is an outpatient procedure called transcranial magnetic stimulation, as I stated in my previous post. We are not sure 100% what is involved, but we think he sits under a medical device that "zaps" one side of his brain every second for 15 minutes, then they will switch the device to "zap" the other side of his head in the same manner. He will spend the night in a local hotel and be re-evaluated the next day. We are hoping to decrease the severity of his orthostatic tremors.

Thanks, will check that out!

Deep Brain Stimulation

I feel the same way about DBS!! Acupuncture works […]

Breast MRI problems

Good to know! Thanks for sharing.

"Participate in a support group"

Hola to you too. But, No se habla Espanol.