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 Wendygsd
#5641
When they first published that they had been given the grant, I contact the Univ. of FL by email and told them I would like to be considered for the study. About a week later, I received a call back from a doctor working with Dr. Shukla and he assured me that I would be included in the study, but they were still waiting for final approvals from the College.

I waited for a couple of a months and contacted them again, and this time Dr. Shukla called me back. She told me that because the grant was so small that they would only be able to take people from the Florida area. Then, in November 2016, I heard of a person from Illinois who had been accepted, probably because he volunteered to pay his own way, so I wrote another email to Dr. Shukla and her assistant and volunteered to pay my own way also. I received a reply from Julie Shegura saying that she understood my frustration and she would check again with Dr. Shukla to see if I was still eligible, and I have never heard another word, nor did I write any more. They never asked for my medical records or anything else, for that matter so I have no idea what criteria they're using and I was very disappointed that there was finally a study being done on OT and I couldn't participate. As someone who has suffered from OT since the late 80's, have had genetic testing, etc., have doctors' records going back to my original symptoms, I would think they could've gained some knowledge, but I guess they're looking for something else. :?:
By Stepford
#5642
I am really sorry to hear about your frustrations. My Dad lives in Florida, so perhaps that's why he was accepted into the study.
By gloria
#5643
Stepford: Must thank you for posting the news of your father's experience as a participant in the Florida clinical trial on the website. We understand how your father has suffered with OT and it is very kind of you to keep us informed of the resulting help he is getting. I was just checking in for another update on how your father is doing and hope it will be a positive change with his battle with OT.

Thanks again for your thoughtfulness and please keep us posted, Gloria
By Stepford
#5651
Dad underwent the procedure last week. He spent 2 days at the University of Florida neurology research center. Since then he is like a whole new person. He doesn't shake very much at all and is able to stand without having tremors or falling. He is also able to put pressure on his arms without shaking at all. It has changed his demeanor and outlook tremendously and it is wonderful to see him so happy. He is still adjusting to his new brain modification (if I can call it that) and is retraining his old habits of walking and standing without compensating for the tremors.
By ElizabethCopelandUSA
#5654
Hello OT friends
I'm brand new here and I am so happy for this group.
Thank you Gloria❤
I live in Central Florida and I've had OT symptoms since 2003. Imagine my delight to see a Florida clinical trial for OT and to hear the wonderful news about Stepford's father.
By Stepford
#5658
ElizabethCoeplandUSA,
Welcome! Since you are in central Florida, I don't know if you are able to go to UF in Gainesville, but if you are, the doctor in charge of the research protocol is Aparna Wagle Shukla, MD.
By gloria
#5671
The Florida clinical trial is exciting hopeful news so far for all of us with OT and hope the ending results of this trial will remain as promising. Gloria
By Lake of the Woods
#5690
Thanks to anyone who has had this procedure and is or will post any information about how it went. There are many of us who are looking for these details.

Peggy
By rglobe
#5705
I read the posts from the Florida trials and needless to say I am keenly interested. PLEASE post anything related to this as there are many many of us sitting on the edge of out chairs with great hope. Thanks Ron in Canada
By Warren H.
#5728
Greetings to all. I had the clinical repetitive transcranial magnetic stimulation therapy on February 7 & 8, 2017, administered by Dr. Wei Hu as supervised by Dr. Shukla at the Univ. of FL in Gainsville. I learned of this program on line and emailed Dr. Shukla. She evaluated me of 1.5 hours on March 9, 2015, stated that I showed all of the classical symptoms of OT, and asked if I would participate in their research. I said "YES!"

With OT, I could not stand still for more than a second or two and had no controlling feelings in my legs and feet. I moved involuntarily backwards, usually for 5 to 6 steps basically uncontrolled. I've tried a series of medications none of which helped my legs and the side effects were in each case terrible. I still take one medication; more on this later. The therapy, overnight lodging, and mileage were paid for, but no meals.

Here we go! The therapy is no fun! Many questions are asked, for this was an experimental research so they needed to know what was "normal" for me. Then electro magnetic sensors connected to a computer monitor were placed on my body (wear short pants please) and I was put through a series of exercises such as climb a stair step forward then backwards, push hard with my arms, push hard with my legs, stand up, and sit down, Then with no electronic monitors but being video taped, turn clockwise then counter-clockwise, bunny hop, try to stand on one leg, then walk three times for 5 meters, turn around, walk back, sit down, and repeat, then do it all over again 3 times walking 10 meters. Now they know how I respond before any treatment. Remember this exercise sequence for it is repeated several times.

Now we go to the Magstim apparatus and get hooked to the monitor. The left side only on my brain was "zapped" for 15 minutes. It feels like someone is hitting your scalp once every second with the dull end of a pencil or smaller end of a small ball-peen hammer. It is very uncomfortable, approaching painful, but tolerable. Now we do all of the exercises again. Now we went to a larger apparatus, the NeuroStar, wherein for 15 minutes one side is on your head is "zapped", then another 15 minutes on the other side. It feels about like the Magstim apparatus. Wonderful. Now it's time for the exercise series again to see what's going on. Now back to the Magstim apparatus plus exercises again. This entire procedure took 6 consecutive hours. The next day we went through basically the same procedure for 5 hours.

Why so long? For every test and measurement Dr. Hu had to click on several computer monitor screens to get specifically me and the exact test. Then there is time to get the sticky tape on and off the body monitors, place the monitors, set up for the video taping, etc.

Immediate results for 3 days afterward: Ouch. I had severe cramping feelings in the calves of my legs from the knees down (no effect on my thighs). I thought "What have I gotten my self into now?" Surprisingly at no time did I experience any headaches.

OK: Long range results - - IT WAS WORTH IT!. I can now stand still and feel my feet! I can feel pressure on my toes or heels and adjust by body to stand still. Recall I couldn't stand still at all before and had no control over my legs and no chance to feel any balance issues before involuntarily moving. Since therapy I have not involuntarily moved my legs, but have voluntarily shifted to maintain comfortable. After standing for a long time, I start to feel the uncomfortable slight cramping feeling in legs, but can move around or sit for a short time and shake it off.

I also have upper body tremors. This did not help of hinder that. I take 312.5 mg of Primidone daily and it keeps that in check with no side effects. However, if I put a lot of my weight on my arms, they still tremble uncontrollably.

If the therapy goes beyond the experimental stage, future treatments may vary substantially from my experience as they perfect their treatment.

One matter I find interesting: There are no funds for any follow-up on the therapy. I thought maybe 3 months later they would want to examine and/or test me. I voluntarily emailed them weekly for 4 weeks and they were happy - but did not ask me to do so. I'll now email them on a monthly basis unless something major changes.

I hope this helps explain some of the procedure and hopefully the other 9 person involved with this therapy have had similar successful results. I've had no direct contact with any other participants. Dr Shukla is "to present an abstract to OT meetings in 2017". That's all the information I have on that.

I hope this helps. Warren Sharp in Venice, FL
By Lake of the Woods
#5729
Hi Warren,
Thank you SO MUCH for posting this (and to Jeff for helping). People will really appreciate learning about this.

I will also tell everyone that I have been in contact with Dr. Torres about this. He advised that he knows Dr. Shukla who is in charge and will be talking to her about this. She is not finished these trials, so until she is done, we won't know that much. Dr. Torres emailed her promptly and sent me this info.

It is good to have Dr. Torres onboard and I know he will help us in anyway he can in the future.

Peggy
By gloria
#5732
Hi! Warren: Thank you so much for your comprehensive description of your experience with the clinical repetitive transcranial magnetic stimutation therapy and although not the most comfortable your sharing it with fellow OT people you are giving them much needed hope for a better future. Hope to see you at the meeting in Sept. Gloria
By Warren H.
#5746
Two month report: On Feb. 7 & 8, 2017, I had the repetitive transcranial magnetic stimulation therapy at the Univ. of FL in Gainsville. The situation hasn't changed any. I can stand still but after a while start to feel uncomfortable in the calves of my legs. I step voluntarily or sit for a short while and I'm good to go again. I MUST walk briskly for 2 + or - miles each morning or I will start to feel cramping in my calves. At other times I have to walk to decrease the start of the cramping feeling, but it doesn't take much walking to shake off the feeling. After long times walking or otherwise being on my feet, I have to sit for a short time for my legs will start to feel weak. But I recover quickly. Overall I'm in much better condition than before I had the therapy. Hopefully the therapy will become available to many more persons. Warren Sharp in Venice, FL
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