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 Betty
#6037
Hello all,

I have read with great interest all the postings of the FL Clinical Trial. I, too, live in FL, and did try to participate in the trial but was not acceptable due to age.

I was so elated as I read the post from Warren, but as time went on, you digressed back to where you were before the treatment. I can only imagine the disappointment. But....you had a few months you were almost 'normal' again.

This is a bit off the subject, but I wonder if anyone else experiences what I do during sleep. When I dream, I am totally free of OT and am just as I was before. I can do all the things I did and it is wonderful.

Everyone who participated in the FL Trials, please continue to keep us updated.

Betty
By Warren H.
#6063
One year + report: On Feb 7 & 8 2017 I had the treatment at he Univ of Fl. The OT treatment lasted for 6 months then gradually faded to where I'm back to where I started. Dr. Hu phoned me and I returned to the Univ of FL on March 30th, 2018. I had 6 electronic monitors taped on my legs and two on the bottom of my feet. For 3 hrs 15 min I went through a series of physical exercises and walking, all recorded on video and a computer. Purpose? To see if I had tremors while walking and exercising. WHAT? I THOUGHT THAT WAS A FOREGONE CONCLUSION! At any rate, now what? Is any future treatment becoming available? Well, there was no answer as to what might come next. What will my latest tests be used for? I'll have to wait them out again and hopefully I can get another treatment, but will this ever become acceptable common (and funded) practice? It's too soon to tell. Warren Sharp in Venice, FL
By admin
#6236
Results: 10 POT subjects (6 females and 4 males, mean age 70.2 ± 8.0 years, mean disease duration 13.5 ± 5.8 years) participated and tolerated the therapy well. Compared to baseline, subjects randomized to the real arm improved significantly on the FABRS standing score (baseline score 1.3; T1 score 2.3; p = 0.02) at T1 than those in the sham arm. With regards to video-rated standing duration time, there was mean increase of 126.0 ± 172.8 sec in the real arm compared to 12.9 ± 49.9 sec in the sham arm that approached significance (p = 0.11). However, at an individual level, there were 8/10 subjects in the real arm showed improvement (figure). No significant improvements were seen at T2.

Conclusions: Low frequency rTMS to cerebellum is a promising therapy for POT however requires confirmation in a larger follow-up study. A longer duration of rTMS will likely result in longer benefits.

https://www.mdsabstracts.org/abstract/r ... ic-tremor/

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