Is this you???
Similar to previous but i think it's worth emphasizing-The more I pay attention the more convinced I am that the state of my gut is the strongest driver of daily as well as more prolonged fluctuations in my Parkinson's symptoms. I am quite certain that this phenomenon is worsening over time--as every time I think i can go back on my "old" diet I pay a heavy price. As I've said before- because of the Entacapone in Stalevo- I can tell how much drug I am absorbing based on the color of my urine ( accounting for how much water I'm drinking). It is becoming predictable- when I'm having a bad day for a reason that isn't clear- within hours to a day i will have some bowel issue-- for me more diarrhea than constipation--as I use fiber and Miralax daily. When I have this "bug" or dysbiosis (leaky gut due to changes in my bowel bacteria) or both or ??-- I will have more gas-more bloating-my urine will reflect that I am getting much less drug into my bloodstream and if I eat dairy, simple sugars or starches -- I feel like "crap"- stiffer-slower-more tired and brain fog-- this is quite distinct from the predictable interaction with ingested protein--- the only silver lining is I know that with time and getting back to a "better" diet- taking probiotics- and quite possibly having a viral syndrome resolve- I will get better-! Sorry again- but what a "pain in the ***"

Hello Schwad,

I think your experience is rather common amongst the crowd who seek complimentary medicine methods. Although it seems the devil lives behind the detail curtain of this malady therefore many iissues are unique to iindividuals there are some common patterns. Imho the digestive tract is key -Janice Walton-Hadlock chinese medicine practitioner identifies parkinsons as fundamentally exhibiting rebellious chi flow in the stomach channel with significant trauma blocks in the feet. How many posts do we see in here about feet dystonia??? I wonder about the rash of early onsetters born in the genera tion where mothers stopped breastfeeding their babys as anemia another sign of inability to digest nutrient (incuding minerals such as calcium etc etc) is also common in the pd crowd. I notice that if my bowels are moving my med is more effective so the magnesium I take is as essential as the med. Dairy doesn't seem to bother me as much except the hard cheeses definitely slow my bowels and med effectiiveness. This raises a larger question in my mind of what does iit say about uus thhat we are unable to receive nutrient in a larger sense as this may apply in many ways as a signature dynamic.

I've heard it said tht a very long time ago in ancient Egypt it was the gastroenterologists (not the neurologists or cardiologists) whose position was at the top of the pyramid of hierarchy of medical practitioners

Below a link to conversation with a naturopath from Australia who talks quite a biit about exactly what you posted on - I listened to it yesterday so was interested to read your corroborating post this mmorn......must be in the air...

Q&A with Naturopath Doctor John Coleman 8/23 by Parkinsons Recovery | Health Podcasts

cheers mate!
MD

This is exactly how I feel. It starts in the gut....im off meds for 15 years now and follow a mitochondrial support diet...I also had a genetic workup done analyzing the exact vitamins and mins that I may be genetically predisposed to have trouble with uptake....waiting for results to futher tweak my diet. I have pd induced COPD and pd induced restrictive lung disease..........

peace

BP

Hello backpacker11500,

You said you have been off meds for 15 years now. Could you elaborate on that? Does it mean you have been able to eliminate PD symptoms on your own - perhaps using neuroplastic concepts like John Pepper? Any information will be helpful.

Thank you,
fbollaci123

I control most symptoms at least as well as I see compared to those on meds. I seem to have fewer issues than those on meds. I did the meds for 4 years 7 years ago and was promptly addicted and sick to just about all of them...it took me 2 years to quit them......side effects and short effective span for the meds is a bad trade off for PD. I struggle for certain....I obviously have pd when you look at me but I don't feel as bad as I did on the meds and from years of reading complaints about side effects and wearing off etc. on this site and others I remain convinced the pill route is a scam plain and simple.....people mention how the pills change their lives for the better and 2-3 yrs later they come back with 10 times the complaints and new sets of pills. Just an opinion but I have been at this for a long time additionally....I have pd induced lung disease and the meds don't address that well...they keep wanting steroids but duh....steroids don't help with rigid chest wall muscles and diaphragms.....

peace!

BP

I do consciously redirect my motions etc not unlike Mr Pepper.....lots of meditation and flowing movement like tai chi etc. I follow basically the Wahles Protocol....Dr Terry Wahles....Minding your mitochondria---you tube....then I add in my own stuff...fresh seaweed, currcumin etc.....I make my own probiotics etc.....and I heat with wood and hunter-gather 90% of our food so after 15 yrs I seem to be advancing in pd no differently than those on meds and likely advancing less from what I have gleaned from posts....definitely less side effects......can I keep it up? I don't know........pd is brutal......and the docs don know jack! pills are the only tool in the ol toolbox for Allopathic hocus pocus.....


peace!
BP

I should have said I'm off pd meds for 7 years now and have had pd for 15...I misspoke....I really only tried sinemet etc for about 1-2 years and they worked but tons side effects.... but they had me strung on benzos as well for anxiety and those were the hard ones to kick. 15 years and med free....except for otc and prn stuff.....no pd med regimen....thank god! that stuff makes people worse in a lot of cases....some folks love the meds but that never or rarely lasts......

peace!

BP

Meds are doing great, when everything is working. This every three hours and timing is everything, but looking forward to DBS to hopefully reduce that timing.

I'm taking Sinemet/Comtan (aka Stelevo, but separate pills). Sure enough I've noticed the same thing with how much variation the color of urine is.

I also love Kathrynne Holden's blogs. Parkinson's disease - Feed Your Brain - Diet For Parkinson's lots of great sensible information about diets and Parkinson's.