Hi I felt stronger and my walking improved I still felt the PD and showed symptoms but 3 weeks after stopping what i now know was the placebo the distonia got worse. I felt gobsmack although I always knew it was a possibility.
It leaves me open and eligible to go on a 3 rd faze trial as i have not been on the active drug.
It was a double blind study which means the computer decided which drug I had and even the lead researcher on the trial did not know what I was on, they could only obtained that info if something went seriously wrong. They have to have so many on the active and the same on a placebo because then if those on the active drug really improved and us on the placebo did not then it was clear there was a benefit to that drug. I did get one thing right though they assessed us 3 monthly and I have always felt my PD like Gus has been aggressive because at week 0 my UPDRS motor score was 28 at week 60 four weeks after stopping the drug my new score is 53 the lower the better.. So even though I wanted to be wrong about that bit I have proven to be right again. Don't know what it was called but It is something that breaks down naturally in our systems. To be honest I feel a bit Peed off. I supposed the good that has come out of it is if I get accepted for the DBS I only knew about the hospital in London and the lead researcher because of the trial. And he is one of the top Neurologist Surgeons in the UK. So hears hoping I find out in November if it is offered to me.