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 ElizabethCopelandUSA
#5750
I met with Dr. Hu and Dr. Shukla today. After being put through the tests to confirm the diagnosis of OT, I've been accepted as patient #9. Dr. Hu said that patient #10 is coming in Thursday and that they are only taking 10 people in the trial. My treatment, videos and tests start tomorrow. I'm excited and hopeful based on what others have shared about improvement in their situations. We are planning to attend the conference in Omaha in September also :)
By Lake of the Woods
#5751
Hello Elizabeth,
Thank you for posting this and good luck to you with this procedure. It is great to get feedback from people on this.
I will look forward to hearing from you regarding your results.

Peggy
By gloria
#5753
Elizabeth: So happy to read that you have been selected as no. 9 in the Florida OT research clinical trial. The promising results so far is giving all OT sufferers hope of a changing future without OT movement disorder destruction. Please keep all your anxious OT friends posted and wishing you great success. Thank you, Gloria
By ElizabethCopelandUSA
#5754
Thank you Peggy and Gloria :)
Today was interesting and tiring. Being a double-blind study, Dr. Hu and I don't know if the treatment today was a sham or real. Dr. Hu said that Dr. Shukla knows. The day went pretty much as outlined in the clinical trial description. There were questions asked by Dr. Hu as to my ability to do certain things. Then I was videotaped while standing as long as possible, sit to rest, then up again as long as possible x3. Another was standing with arms crossed across my chest and my eyes closed, then turning around in a circle to the right, then to the left. Then standing on foam as long as possible with eyes closed and jumping with both feet....standing broad jump, thankfully with eyes open.

Then we moved to the hallway where I was videotaped doing the TUG Test, and other tests to measure my gait, speed, and balance. The worst for me was having to walk putting one foot in front of the other (Drunk driving test). I didn't care for the metronome test either where you have to walk while turning your head back and forth to the beat of a metronome for 10 meters. I imagine that I looked pretty silly doing that after looking drunk on the previous test :lol:

Then into the EMG room to record the tremors while sitting with one leg after another locked and extended. Then standing, then walking.

Then in the same room they did the TMS measure as described below. It was uncomfortable and slightly painful (mainly in my left eye and jaw/teeth) with the last of the third sessions almost biting my tongue each time as it caused my jaw to suddenly clench x 50 times. The first session was done 50 times, the middle 100 times, the last with 50 again.

TMS measure [ Time Frame: Baseline to 60 Minutes ]
Cerebellar inhibition (CBI) will be recorded which is a well-established TMS measure. A paired pulse protocol will be used with right cerebellar stimulation as the conditioning stimulus, (cerebellar conditioning stimulus or CCS) and left motor cortex stimulation (M1) as the test stimulus (TS). The investigator will determine the 'TS 0.5mV' which will indicate a stimulator setting (determined to the nearest 1% of the maximum stimulator output) that produces a peak-to-peak MEP amplitude of ≥0.5mV in at least five out of 10 trials. Interstimulus intervals (ISI) of 3 to 8 milliseconds at increment of 1 millisecond will be tested. Each run will consist of 10 trials of each of the paired stimuli (CCS-TS) and 10 trials of TS alone delivered in random order. Inhibition trial will be expressed as a ratio of mean conditioned to mean unconditioned MEP amplitude for each subject.

This was all repeated three times today. Once before the rTMS and twice afterward at 30 minutes post rTMS and 60 minutes rTMS. This took place between 10:30 and 3:30 with a 30 minute break for lunch before the treatment.

The treatment itself was in a different room with the new MagStim equipment. They did the left side first, 15 minutes. The sound is very loud, like having an MRI and does feel like being hit in the head with a ball peen hammer repeatedly. Then the right side was done for 15 minutes, which was better, having been given ear plugs for the second half of the treatment. Afterwards my neck hurt because of the position in which you have to hold your head (I have herniated and bulging disks in my neck.) I expected my head to feel bruised but it doesn't at all.

After the treatment we went through two more sessions of everything that had happened in the morning, including drawing the spirals and straight lines two more times, all the videoed hallway exercises and standing as long as I could x 3, etc. and the TMS measure.

It felt to me that I could stand longer after the treatment, but then in the last session of standing I was back to where I started. My hope is that today's treatment was the sham treatment and tomorrow's will be the real treatment in which I will see marked improvement. Dr. Hu said that tomorrow should only take from 10:00 to 1:00 :)
By Betty
#5761
Hello everyone,

When I heard of the trials to be held at the U of F; I got all the information I could, because I live about 2 1/2 hours drive from Gainesville. When I got more information, I found I did not qualify for the trials due to age. I was disappointed because Dr. Torres has me in his trial ~ which ~ by the way, is excellent.

I hope the U of F gets things together, because it was there, Dr. Hallman named OT over 20 + years ago.

Good luck to all who have tried to get into their program.

Betty
By cpadgett2
#5779
I was in the research at Shands in May 2017. It was a two day study of about 6-7 hours of repeating exercises with the magstim rapidstim2 and sham magstim rapidstim2 in the middle of the two days. If you go to ClinicalTrials.com rTMS Therapy for OT, you will see the protocol.
I do feel that it was beneficial, but am waiting for results. Yes they do need to have better communication skills.
By cpadgett2
#5780
I was pt. #10. It was quite an experience. I enjoyed your detailed description of the study. I will also be in Omaha in September. I live in central Florida.
Marcia
By Lake of the Woods
#5789
I don't know about "when" we will get results. I do know that I have asked Dr. Torres-Russotto, who is heading up the research in Omaha in September if he will talk about this. He does know the doctor that was in charge of the Florida Clinical trials and hopefully he can answer some questions.

Peggy
By Warren H.
#5790
Hi, Dr. Shukla who is in charge of the OT program at the Univ. of FL is to present an abstract in Sept. 2017 to "OT Meetings". This is all I know. I think they tested 11 patients - now, is that enough research to really see how effective the therapy is? I don't know. Their budget is limited. I'm still concerned that their budget does not allow for any follow-up (examination) of patients who went through the procedure. We will have to wait and see. Warren in Venice, FL
By KathyR
#5793
What is involved in a clinical trial. Are there any studies, groups, meetings, anything happening here in Florida. I wish I had known about the studies at USF as I'm very close to that area and actually have been going to Dr. Hauser there. As much as I am interested in the meeting in Omaha, Tampa would be ideal.
Kathy R
By Warren H.
#5794
Hi, I underwent the therapy on Feb 7 & 8, 2017. I've repeatedly asked Drs Hu & Shukla about any one-on-one followup with other patients or in-state "therapy club" and have never had any answer. They seem to want a "close hold" on all of their trial information. This is the only forum I've found for this topic, espec. in Florida. The therapy, although long and most uncomfortable, worked wonders for me and I'm doing much better. On this forum I've found only two other participants that have given any after therapy input. Results, not surprisingly, seem to vary with each patient. I still have two concerns: are the 10, 11, or 12 patients they applied the therapy to enough to be a substantial number to qualify for further study and/or FDA approval? Also, as I've mentioned in other posts, they have no funds for any follow-up examination of therapy patients. It seems that that would be a key factor in funding. OT is a rare disorder so it isn't going to get too much attention. Best wishes, Warren in Venice, FL
By Lake of the Woods
#5795
I know from other trials - like the one we participated in - in Omaha, Dr. Torres explained that the researchers do not and cannot release information until certain things are done. One thing also is that the researchers want to write up papers on this research and that also takes time. Nothing happens quickly with this process.

Hopefully we will get some feedback and be able to ask questions - I know we will have a chance to ask questions when we go to Omaha, Nebraska this fall.

I know there are 2 participants coming to Omaha so that is very beneficial also so that we can meet and ask them questions.

Peggy
By Warren H.
#5814
Warren H. wrote: Sun Mar 26, 2017 5:05 pm 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, walk putting one foot directly in front of the other, try to stand still on a foam pillow, cross my arms and close my eyes and try to stand still, 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.Then do the walking exercises again this time moving my hear right and left in rhythm. Then I poured water from one cup into another without spilling. Then there were tests where with both right and left hand to draw with a pencil inside a spiral and not touching the spiral lines, then draw a series of lines between parallel lines with decreasing spacing,again being careful not to touch any of the lines. Now they know how I respond before any treatment. Remember this exercise sequence for it is repeated several times. (This sequence may not be in the exact order administered, but you get the idea.)

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
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