PD and the microbiome - WinnieThePoos Chr... - Cure Parkinson's

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PD and the microbiome - WinnieThePoos Christmas update

WinnieThePoo profile image

If you only knew how superstitious I am, and how wary of commentators curse. Still, man up Winnie, and tell it as it is

Last night Sue and I went to the PMU - our local bar where our ex-pat friends hang out. I explained that my CBD oils, which I ordered more than 3 weeks ago, had at last arrived - but I wasn't planning on taking them. For 2 reasons

1) They are prohibited by the PRX002 trial I am hoping to join next year, and if I can, I want to join that trial

2) Although I ordered them in a bit of a flap after my return from the UK because I appeared to be deteriorating rapidly to the point where it might interfere with my work, and I wanted to try CBD oils before Sinemet, - actually today, and for the last week or so, I feel really good.

So, this morning I pointed out to Sue that it was 12 months since my symptoms prompted me to see a neurologist (the appointment was in March, but tremors and persistent loss of smell prompted me to seek that appointment in December), and I was going to go on to say that at the very worst, progress had been slower than I feared, and whilst it was a mixed outcome, on balance, maybe I wasn't much worse.

I was interrupted by her saying "and you're much improved from a year ago". Of course, she isn't me, and can't know how I feel, but she has a case. Maybe, on balance, I am better than last December.

It has been a far from linear path, with notable low points in March, around the time of diagnosis, June - just before my sons wedding, and November (the last visit to the UK). There is a pattern to that - the 3 low points were when I lapsed the "management regime" or was disrupted by antibiotics


Stress management (Sue insists I put this one first. But that is because tremor is a visible symptom. Still, I agree it is fundamental)

Exercise - my daily hour long, vigorous dog walk in the mountains. I want to build on this. I may buy a multigym (I will investigate the gym in Limoux, but its no David Lloyd Kings Hill. I miss my old gym and tennis club). Maybe that was holding PD at bay before I came out here to France

Nutrition / Diet. Focussed in my case primarily on microbiome management, with an eye to minimising restrictions, and as far as possible avoiding "unnatural restrictive diets" (like keto). I think this is working. It pretty much fits with the "food for thought" post. I will be interested to get my poo test results, hopefully early January, although I may well do another soon. I think I may have been a bit trigger happy and tested whilst things were still a bit disrupted down there. Among my reasons for saying "I feel really good" during December, has been spot on, regular A1 pooping! Planned enhancements are to fry a bit less, cut back alcohol a bit, and lose another 7kg (more exercise will also help here)

I feel this calls for a celebration - We'll go to the glacier, the bar where our French friends hang out, and order blanquette de Limoux. And take some mince pies down (just one can't hurt!)

Merry Christmas :-)

3 Replies

Feeling better is definitely a reason for celebrating. Have you tried or considered trying B1? It should not disqualify you from the future trial and if you started it soon you might have a result before the trial (if you're accepted).

I have a knot tied in my hanky to look at B1, and mannitol. For now my symptoms are my only measure of disease progress and therefore the efficacy of my microbiome management. And my symptoms are mostly very mild. Bit of a mixed day yesterday. Thought my left arm was swinging a bit, then had some mild left hand resting tremor. Which disappeared when we hit the bar and blanquette and mince pie.

The trial asks me to discuss all existing supplements and not to take any new ones without permission.

Think of it this way. The trial is giving me a drug and observing the change in my symptoms. If B1 works it's going to corrupt those results. If it doesn't - why take it?

Whilst, as I said to Ian frizzle, tomorrow is a day too late to start a therapy which halts the progress of this disease, if I want to help this research I need to play fair, and I probably have the ability to do that.

The trial has other measures like mri and datscan, blood tests, and if I agree, cerebrospinal fluid tests, etc - but symptom assessment is an important one.

I've participated in a lot of research and I agree that you have to do it their way.

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