"Vous comprenez. C'est le produit"

[WinnieThePoo]

"You understand? It's the trial drug" . And as such I will get phoned by the doctor tomorrow and in a week to make sure I'm ok. First infusion of the 2nd year of SPARK. Not placebo or 250mg. Either 1250 or 3500. Yes, once more i resemble a pin cushion. Hoping for good things

[MBAnderson]

We have our fingers crossed. Keep us posted.

[Fed1000]

They will certainly be good things. Thanks for all the information you will provide us. Where does the test take place? Thanks Winnie.

[WinnieThePoo in reply to Fed1000]

The trial is multi centre. I am one of 6 people at Toulouse

[reedboat2]

Have you noticed any changes in progression since starting the trial?

[WinnieThePoo in reply to reedboat2]

It's very confusing. If i could decide what the progression has been i would then need to assess what it would have been

[reedboat2 in reply to WinnieThePoo]

Very true. And each individual’s PD journey is unique. I am tremor predominant and progressing slowly. But within those parameters I have better and worse days. Keto diet, as much exercise as possible, and minimal medication seem to work in my favor. Be well and wishing you success in your trial.

[jimcaster]

Best wishes! No matter what, thank you for participating in the trial. We are learning more every day.

[WinnieThePoo in reply to jimcaster]

Thanks. I'm almost overwhelmed by the volume of positive news about PD research

[redhawk1]

Best to you Winnie! Having been through the Roche Prothena trial I know what you mean when you say you feel like a “pin cushion”! lol Keep up the great work!! Keep us posted!!

[WinnieThePoo in reply to redhawk1]

Thanks. I don't help matters having difficult veins. I had 3 punctures Tuesday including 2 in the back of my hand to administer the radioactive dat scan tracer, and 5today for the blood samples and infusion.

[Parkinsonjisung]

Can you clarify? Do you mean you've been on the real thing for the past year or that you just know that you're definitely getting the real thing for year 2?

[WinnieThePoo in reply to Parkinsonjisung]

For the first year i could have been on placebo, 250 , 1250, or 3500. As of today the only possibilities are 1250 or 3500. The (limited) good news at this early stage is no adverse reactions

[Parkinsonjisung in reply to WinnieThePoo]

Thanks for clarifying. Best of luck in the trial!

[Juliegrace]

Best of luck from someone else with difficult veins. I feel your pain of multiple sticks.

[Despe]

Good luck, Winnie. If cure is found one day, it will be attributed to your and other trial participants' courage, TRUE WARRIORS!

[Kimdur24591]

Veel succes!!

[WinnieThePoo]

So the doctor called me yesterday. And will call me again on Valentines Day ( we have a special relationship )

I think its all a bit contrived. Sure, I could have been on placebo, and now on a high dose, so its day 1 again for trial precautions (hence the 2 head scans, ECG - I have a hairy chest as well as hidden veins, - blood pressure, and urine and blood tests. At least I didn't fail my urine test this time).

(I was less sharp on the senility tests, but I think I was distracted and they insisted I do them in French. Could only think of 7 words beginning with F, and got lost counting backwards from 100 in 7's. "Four twenties-thirteen, four twenties-6, sixty nineteen... stupid system!)

But they have 6 people on the SPARK study at Toulouse, so chances are at least one of each stream, and as far as I am aware all are happy and continuing and there have been no adverse reactions.

What's odd is the ignorance of the change in the protocol in May 2019. Even my trial doctor had forgotten it as she briefed me on "Vous comprennez? C'est le produit". She told me I would now definitely be on a real drug, even if I was previously on the placebo, at one of the three trial dosages. I had to correct her - that I could only be on 1250 or 3500, and if I had been on 250 I would be switching to 1250 or 3500. She had to go away and re-read the protocol! And there is nothing in public reports, the official trial web site - my trial doctors briefing notes.

[Fed1000 in reply to WinnieThePoo]

Come on Winnie with enthusiasm and determination with the awareness that you are doing something great.