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 Cheryl Snyder
#5828
Hello all,
I also participated in the Florida clinical trial. Subject #7 here. I had not been formally diagnosed prior to the trial, though I have had symptoms for approximately 5 years. Dr Hu tested me and I had my diagnosis and could participate in the trial! All in all it was a very interesting, slightly uncomfortable and exhausting experience. As the treatments were blind, Dr Hu and I did not know which day the actual stimulation would occur and which day was the placebo treatment. I knew.... The first day was real! I had relief from my tremors for approximately 24 hours. They started back while preparing for the second treatment. There was no relief of symptoms the second day, unfortunately. I am excited that others had more lasting relief and look forward to participating in future studies.

Cheryl, Crescent City, FL

PS I would love to get together with others with OT for support!
By Lake of the Woods
#5830
Hello Cheryl,
Thank you for posting and keeping others informed which is so important. Are you aware of the Omaha research coming up this September - there is a lot going on there and you can read about it on this website and forum. I hope you will consider attending.

Peggy
By gloria
#5831
Hi! Cheryl: I too thank you for reporting about your participation in the Florida clinical trial ..... the differences in responses will be very interesting at the completion of the trial...... Gloria
By Warren H.
#5914
Warren H. wrote: Fri May 26, 2017 10:16 am 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
OT Seven Month Report: I'm having problems posting a new post. Please reconfigure this if necessary. On Feb 7 & 8, 2017, I had the OT treatment at the Univ. of FL in Gainsville. I'm having trouble standing still and am leaning on something when I can, a "habit" I broke after the treatment. I'm also sitting down when I can to do something instead of standing. My lower legs are increasingly having a feeling of weakness. Various exercises have not helped. A few times I've stepped involuntarily and this seems to be slowly creeping back. I'm still much better than before the treatment but I feel that slowly the effects of the therapy are starting to wear off. Only time will tell. While trying to stand still I frequently must move my legs voluntarily to remain comfortable. After two or so hours on my feet (hiking, touring, etc.) I must sit down for a few minutes then I'm good to go again. Warren Sharp in Venice FL
By gloria
#5916
Warren : Thank-you for giving your continuing updates on your current OT status from the Florida Clinical( physically difficult trial ) !!
All OT friends appreciate your reporting. Gloria
By Cheryl Snyder
#5929
Hi Warren - I also participated in the Florida clinical trial. My results were not as impressive as yours! I had relief from tremors for approximately 24 hours.
On another note, I finally have insurance and am wondering if there is a neurologist that you may have seen and can recommend?
Thank you for your time in advance
Cheryl - Crescent City, FL
By admin
#5941
Update from Warren -

Subject: OT 8-month Update.

On Feb.7 & 8, 2017, I had the clinical trial at the Univ. of FL in Gainsville. Initially it really helped. The treatment effects are slowly wearing off. Now I have trouble standing still and always want to lean on something of sit down. I avoid doing anything while standing if I can do it sitting. I've involuntarily moved backwards a step or two and this is increasing in frequency. While walking fast, if I know I'm going to stop, there is no problem. But if someone or something gets in front of me causing me to stop abruptly, I'll step back involuntarily 5 or 6 steps. After being on my feet say for 2 hours (shopping - whatever) I must sit down for several minutes then I'm good to go again for a while. My knees will buckle once in a while, I've been to stop it and have never fallen down. I still have pain in my legs from the knees down. My upper body tremors have not changed (I control it with Primidone); Primidone does not help my legs (a whole list of medications has not helped my OT.) Overall I'm still much better off after the treatment, but as stated I'm starting to regress.

Warren Sharp in Venice
By gloria
#5942
Warren: I'm sorry to hear that the Florida clinical trial is progressively lessening but not surprised because we have heard from a quite a number of OT people that participated in the Florida clinical trial that it has not been successful for them. I know too that it was a difficult one to have participated in as well. Please keep us informed on the continuing lessening . Gloria
By ElizabethCopelandUSA
#5972
Hello all,
Elizabeth from Central Florida here. I met with Dr. Shukla and Dr. Hu today at their request for a follow-up to the Florida Clinical Trial. They expressed their desire to follow-up with the participants (up to 13 now) every six months to see how we are progressing.

They have a new padded walkway with sensors now that takes measurements as you are walking. I walked this four times while the results were recorded on a computer. Then I was weighed and my blood pressure taken. We moved back to an examination room where Dr. Hu and Dr. Shukla interviewed me about my progress and how I was feeling. Dr. Shukla was interested in my feedback from the trial and said it was very helpful to the research. She seemed hopeful that there would be more research in the future.

We then drove over to the Hospital where the EMG equipment has been moved. Electrodes were placed on both thighs and my right arm. I was asked to stand four times while my tremors were measured and recorded. That was all for today, but I expect to return in another six months. As part of the Clinical Trial, there is no charge.

I am not sure that I reported here on the forum about my second day of the Clinical Trial months ago. As it turned out, the first day of the trial I had received the real treatment. Dr. Hu told me while doing the treatment that he was having difficulty keeping the instrument in the precise location due to my long hair. It had been easier with the men. I had some relief that first day and felt that I was able to stand a couple minutes longer than before. I think that may have lasted a couple weeks. I shared with Dr. Shukla today that my limited results could be due to not having the treatment going to the precise area intended, perhaps because of my hair making it difficult. I knew that others had reported relief for several months.

It would be amazing if this treatment were able to be perfected (and affordable) so that we could get several months of relief and stop the disease from progressing! Even having 3-4 treatments a year would be worth it!
By Warren H.
#5977
10 month OT status: I had the stimulation therapy on 7 & 8 Feb 2017 at the Univ. of Fl in Ganesville. Initial results were great but I've now slowly regressed almost to the my OT status before the treatment. I can't stand still, period. I lean against something, hold onto something, or preferable sit down. Walking is not a problem but being on my feet for say an hour (e.g. visiting an arts & crafts show) I must sit down. My knees will buckle but I've always been able to catch myself and have ever fallen down. After sitting for a short while (maybe 5 to 10 minutes) I'm good to go again walking. I do marquetry (inlaid woodwork) and bamboo artwork items, done while sitting down. We had a show this weekend and I had a terrible time simply taking craft items from the storage containers and placing them on the table to display. My legs were moving so much I was hanging on to the table with one hand and trying to place items on the display table with the other. Simple everyday routine is getting harder - like sitting down just to put on a pair of pants! Standing on one leg? Forget it! Someone posted perhaps the stimulation should be repeated every 6 month or so. I agree. Stimulation works great for a while, then it slowly dissipates, at least in my case. When walking and I know I want to stop, I can do so without too much disruption. But if someone steps in front of me and I have to stop suddenly, I will involuntarily take 5 or 6 steps backwards. While trying to stand with nothing to hold on to, I start involuntarily moving backwards any number of steps before I can get control again. Repeated stimulation? I hope so!

Warren Sharp in Venice, FL
By gloria
#5978
Warren: Thank-you for the continued 10 month status reporting of your slowly regressed stimulation therapy however hopefully repeating the stimulation again will start you on another 10 month session of some OT relief. Please continue to report the results as you did the first time. Thanks, Gloria
By Warren H.
#5979
gloria wrote: Wed Dec 13, 2017 12:43 pm Warren: Thank-you for the continued 10 month status reporting of your slowly regressed stimulation therapy however hopefully repeating the stimulation again will start you on another 10 month session of some OT relief. Please continue to report the results as you did the first time. Thanks, Gloria
Gainsville FL seems totally uncertain what the future holds for their research. I've sent them messages and Dr. Hu phoned saying in Dec. he would call re: appointment in Jan. I asked if this would be a treatment apt. or a test apt. or both. He wasn't sure how the University would react as they had to apply AGAIN to do additional research. What?! Right now it's "wait and see." I will let you know any results. Hopefully this can go forward. Warren in Venice, FL
By vanna61
#5985
Warren: Thank-you for the continued 10 month status reporting of your slowly regressed stimulation therapy however hopefully repeating the stimulation again will start you on another 10 month session of some OT relief. Please continue to report the results as you did the first time. Thanks, Gloria

Hallo Gloria and Warren
Sorry for my bad understanding but you know I'm from Italy:
Warren has undergone a magnetic stimulation treatment and got a significant relief of his OT syntoms ; this relief has been working for about 10 months and now it would be time to repeat it ( if there are money) ?
Do I understand well?
I asked my neurologist about these
he said he COULD do it but it would be at my whole expenses since there no scientific evidence. Ha called it 'compassion care' . ???
Best whishes x Christmas
Vanna
By Warren H.
#6036
On 7 & 8 Feb 2017 I had the clinical trial treatment at the Univ. of Fl in Gainsville. After about 6 months my OT problems slowly started to reappear. A year has passed and all of the positive effects of my OT treatment have disappeared; I'm back to all of the classic problems of OT. Will there be any follow-up treatment(s)? What possible long term effects might one suffer with repeated treatments? The treatment had a short range positive effect. Warren Sharp in Venice FL
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