WinnieThePoo thinks Parkinsons is poo

[WinnieThePoo]

I am 57 years old and was diagnosed with Parkinsons in March 2018 confirmed by a DATscan in May 2018. I am due to start a trial for an alpha synuclein monoclonal antibody anytime (nov 18). Symptoms are mild at present - occasional tremor, some jerkiness of movement, aches and pains, poor smell, and "disturbed bowel". There is a lot of research almost daily since 2015 about Parkinsons and the gut - particularly bacteria and I am interested in exploring what seems an obvious pair of questions. "Can a PD patient change their gut bacteria to be more like a normal persons?" and "If the PD patient restores normal bacteria will this affect the manifestation and progression of the disease"? It begs lots of other questions, but for now my big one is "WHERE CAN I FIND A PD CLINICIAN WHO WILL HELP ME MONITOR THIS PROPERLY"? Any ideas?

[Xenos]

Australia, Pr Thomas Borody.

[WinnieThePoo in reply to Xenos]

Thanks. I'm in France (or the UK). Would he provide remote advice? Can anyone else point to someone in Europe? I am hoping that since I am signed up with Christine Brefel at Toulouse for a trial where I need to see her monthly, I can persuade her to take an interest, but , even though the microbiome and probiotics are mainstream in France, it seems science works in isolated pockets and neurosurgeons don't do gastrointestinal!!!

[alexask]

Good luck with the trial here. In the meantime go through the posts here - there is a mine of information. My only concern with your trial is that it might preclude you from trying out some of the supplements that might help you on here. Otherwise do your best to exercise for at least half an hour a day 5 days a week.

[WinnieThePoo in reply to alexask]

Thanks. I exercise daily. An exercise routine and a 60 minute vigorous dog walk in the mountains. The trial doesn't preclude any supplements. Just medications. No sinemet for the first year (no loss). The only substance she excluded that I enquired about was cbd oils, and I need to follow up whether that is her prejudice since cannabis isn't listed in the trial exclusions. How successful has your exercise regime been.?

[Fredzu in reply to WinnieThePoo]

Very successful. I exercise 6 days/week. Recumbent indoor for 50 minutes and alternate days with weights. I have some “down” periods

while exercising but I refer them as “victorious.”

Life is Good.

Fredzu

[alexask in reply to WinnieThePoo]

Exercise has worked well to resolve my symptoms, although I also think that Mannitol has been very helpful (but only one teaspoonful a day in coffee in the morning - that's just enough to stave off constipation). I do at least 20 minutes exercise vigorously each day, but aim for 40 minutes at least 3 times a week. The other thing that I think has been most influential is my different mindset when it comes to sleep. Firstly I have made it a habit to watch light comedy prior to bed in order to get into a good mood. I live in the UK and so watch things like Would I Lie to You and various stand-up comedians such as Bill Bailey. After that I may read a book by PG Wodehouse, which is light comedy and not too taxing. I have also adopted a stoic attitude and signed up to a stoic daily email. To be brutally honest most of us here have been blessed to have lived a fairly long life (young onset apart). We are probably the top 1% in terms of wealth resource of the people who have ever lived. I also have a reasonable social life but I think for those who do not then faking it by watching comedy panel game shows will be of great benefit. So rather than woe is me and fearful of the future we should be grateful for the life we have had and any blessed pain free moments we might still come upon.

[Tzichi]

I am very interested in the subject. Hope to get some answers .

[WinnieThePoo]

ncbi.nlm.nih.gov/m/pubmed/2... is one of the reasons for my interest in playing with poo

[WinnieThePoo]

biocodexmicrobiotainstitute... and another...