Where Have I Been and What’s This About Parkinson’s
It has been awhile since I wrote to you out there. One scenario could have been that I was having too good a time and didn’t care to keep you updated and informed like in the past. But the reality was that I was chasing my own health challenges without much success until only last fall when I was diagnosed with Parkinson’s Disease (PD). And yes, I just used success and Parkinson’s in the same sentence.
How? Why me? There are about 90,000 new cases in the U.S. annually and Parkinson’s disease affects around 1% of people older than 60 and 5% of people over 85. I know, but I am only in my mid fifties, right? Turns out Young-Onset Parkinson’s Disease (YOPD) is reserved for those below 50, so I am just another old guy with PD. I wallowed in the “why me?” for about a minute, then I just got curious as hell. What is behind this thing?
Turns out -there is just a ton of very recent info about this disease and it’s relationship to herbicides, pesticides and especially cleaning agents that result in TCE – the most prevalent chemical contaminant in well water. And exposure generally occurs 10- 40 years prior to any symptom onset. So living the more rural natural life comes with an irony of tainted water supplies if our water came from a well near water traveling underground from contaminated locations.
Why now? Good question – metabolically I could not be much healthier. Four thoughts, there are more, but let’s start with four:
1) There are likely some familial traits at play here…I have a parent with a condition called benign Essential Tremor (ET). This leaves me far more likely to develop ET but also 2-3 times more likely to develop Parkinson’s Disease. Yet the PD is more likely to be the tremor-dominant type. 85-90% of people with PD have no known genetic cause and I am one of those. So environment is still likely playing a role.
2) Time plays a role – I have accumulated enough decades to make this all possible.
3) It’s random af.
4) I have had some accidents in the past couple years that possibly sped PD progression.
Accidents? Yeah, anyone with PD reading this knows that SH#! happens. A year before diagnosis, I tried an epic mountain day – a 12 mile hike at 10,000 feet elevation followed immediately by a mountain bike ride the long way down. Poorly fed and under hydrated, my body blipped a couple times, once near the end dropping me to my head and leaving me unconscious for nearly 5 minutes. Hindsight? I think the pre-Parkinson’s symptoms helped cause the fall but either way – this threw me…why did my body not perform as it used to? Six months later, I had a noticeable tremor in my left hand. but that did not stop me from going at a pile of wood with a hydraulic log splitter as I had done many times in prior years. This
ended with a decapitation of my middle finger of said left hand. A cavalier plastic surgeon decided he wanted to try to stitch and pin the tip back on against my recommendation. Three months and a ridiculous amount of pain later, the fingertip was finally removed…again. So 2022 was spent recovering and wondering why I had a left tremor and was SOO tired.
Neuro workup? I have run so many blood tests on myself – more on this in future posts. But I visited with two neurologists, one here in Maine and one in Boston at Brigham’s. The diagnosis is based upon clinical findings and not on any test. I used blood/lab results to assure all other parameters were checked. I am developing my preferred PD Panel based on what I did while scratching my own itch. By November 2022, my PD diagnosis was clear
SO now what?
The first months were set watching symptoms and assessing progress. In these months I read every study I could find and every book, podcast and article too. I also implemented the types of exercise that have been shown to slow progress of the disease. I am walking 5 miles a day / Pedaling on an indoor (now outdoor) bike at a rapid cadence about 4-5 hours a week / In a Rock Steady boxing group twice weekly / dancing weekly / yoga – meditation – racquet sports…you get the idea. Movement needs to be at least two hours a day and one of those hours must be challenging.
Not much has changed here – I am already pretty low carb with optimal glucose balance. And I eat 1-3 veggie servings with each meal. I am better at getting fermented foods in my daily diet like kim chee/ kraut / kefir / plain yogurt. I am also much better at staying hydrated! I need to eat more with my increase in activity so I do not skip meals (intermittent fast) like I used to. Weight loss in the first year following PD diagnosis is a bad sign. My goal is strength/endurance/balance gains…not weight loss.
This has been a personalized path. I take high dose D and B12 and curcumin and NAC and CoQ10 and reduced glutathione and a multi and extra magnesium. I did a one month trial of high dose B1 and a 3 month mercury detox. I use daily electrolytes. I think some of what I am taking is noticeably helping but much of what I am doing is hedging. I will be simplifying this program over time, not complicating it. I base the core of what I do on my own personal blood test results.
I am not on any meds right now. This will not be the case long term but I am capable of tolerating the annoying tremor and it is gone with action, so I am actually typing these words, I just cant stop or the tremor goes like the wind. There are some very cool non-drug developments in the pipeline with what is called Vibrotactile Coordinated Reset (vCR). With my type of PD, I am likely a strong candidate for this therapy – Boston Scientific and the researchers at Stanford need to step up the pace or invite me to be a research subject.
I will soon post my 2022 labs that I found helpful to fill the gaps of my Parkinson’s diagnosis. And I may be traveling to Boston to subject myself to some research tests. Most importantly, and this holds true for us all, co-morbidities need to be addressed and dealt with naturally. With (or without) a progressive neurological condition, I have big skin in the game to have the rest of my health optimized. My blood sugars, cardiac health, metabolic #’s and fitness all need to be the best possible.
There are a lot of great resources out there. My favorite of them all has been the Davis Phinney Foundation – who masterfully compile resources that inform us toward the healthiest Parkinson’s outcome. And if you want to geek out on the Science of Parkinson’s…Simon is your man.
If you read up more on Parkinson’s you must understand one key concept, that for every individual with Parkinson’s they represent one unique case and that’s it. This is, in part, why nutrition and drug trials have failed so much – PD is a family of conditions and there is wild variability under the umbrella of this single title of a diagnosis.
If any of you readers are this far along…thank you for your interest. My clinical practice, as of May 2023 is remote via ZOOM/Skype appointments. My personalized schedule allows the necessary movement and activity that I need so I can continue to consult with individuals working to find their healthiest selves.
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