A Bear of very little brain

[WinnieThePoo]

I failed my urine test last week, and had to resit it this week. This was one of 4 things that nearly got me kicked off the trial at Toulouse

The others were blood pressure of 160/103 (it eventually dropped to 135/84), "shy veins" - as the nurse said to me, "you do realise this trial is for a one hour infusion every 4 weeks"

And not enough PD. I was having a really unsymptomatic day for my first UPDRS assessment, and was tempted to drag my left foot deliberately on the walk up the corridor. Fortunately my left pinkie put in a showcase tremor just at the right moment.

Not sure what's going on. My sense of smell seems to be improving (slightly) as well.

I dug my heels in on one of the cognitive tests - counting backwards from 100 , 7 at at time. Insisted I would only do it in English. Bloody 4 eighties thirteen for the first number was never going to happen (quatre-vingt treize).

Still. Made it. First infusion booked for 8th Feb

[MBAnderson]

What are the infusions?

[WinnieThePoo in reply to MBAnderson]

BIIB054

clinicaltrials.gov/ct2/show...

[WinnieThePoo in reply to MBAnderson]

Or placebo of course...

[MBAnderson in reply to WinnieThePoo]

I hadn't known about this trial before your post. It looks promising.

It must surely be a blow to one's self-esteem to failure a urine test.

Do you know how people are randomized, i.e., will there be equal numbers in the placebo cohort or do you have a better than 50/50 of getting the drug?

I hope you get the real thing.

[WinnieThePoo in reply to MBAnderson]

I have a 2 in 7 chance of being in the placebo group. The drug group splits into low medium and high doses. At the end of the first 12 months the placebo group are randomly allocated (blind) to one of the 3 active drug groups. So I'll get the real thing eventually

My urine contained opiates - specifically prohibited from the trial. I couldn't think how I could possibly have taken any medication which would be responsible (paracetemol and codeine would have been the obvious one) I had a really bad cough the night before and it turns out the French cough mixture contains an opiate.

[MBAnderson in reply to WinnieThePoo]

Is this tests only for residents of Japan?

Why did you choose this trial?

[WinnieThePoo in reply to MBAnderson]

Japan? I am joining the trial at Toulouse, France. There are several other centres in France. I am pretty sure there are trials in the USA too.

Why? - the trial was looking for newly diagnosed not on meds, and we are a select few, so I was looking for a trial where I could offer that whilst I still can.

I discussed with my original neurologist that I wanted to try to stop disease progress and avoid conventional symptomatic medication, and I was interested in and had researched new treatments - specifically Exanatide. So he referred me to Christine Brefel at Toulouse, (endorsed by my contact at CureParkinsons UK) and she felt this was the most exciting prospect around - much more so than the various repurposed drugs (of which there are several trials in France open at the moment, including an iron chelator and another GLP1 receptor agonist). Dr Brefel thought this drug the most promising currently for halting or significantly slowing the progress of the disease (and of course, she needed trial subjects...). My only issue with the protocol was I didn't want to have a lumbar puncture. We agreed I could participate without that. Starts 8th February (8.30 am - unless I can negotiate a later appointment - its a 2.5 hour drive so a 5.30 departure )

[2donkeys in reply to WinnieThePoo]

Good luck WinnieThePoo! By the way, we're a little north of you along the Charente and Dordogne border.

[WinnieThePoo in reply to MBAnderson]

parkinsons.org.uk/research/...

recruiting in the UK

And the USA??

thesparkstudy.com/en-us/cli...

[park_bear]

Here is a PR of initial phase 1 result - appears to be safe, binds to alpha synuclein and persists in the bloodstream:

parkinsonsnewstoday.com/201...

[WinnieThePoo in reply to park_bear]

Yes. Safe and well tolerated but relatively low uptake in the cerebrospinal fluid and concerns our old chum the blood brain barrier may be an issue. In which case it may be a candidate for something like the modified rabies virus delivery method. Anyway, I'll do my bit while I can

[moonsake10 in reply to WinnieThePoo]

counting backwards from 100 by 7's??? Not on my bestest day...anyone else?

[mblongdon in reply to moonsake10]

ha ha me too. Don't ask me much about politics either!