My Parkinson's Journey
Some time in 2022, I noticed a twitch in my ring finger on my left hand, which, as I typed, would randomly insert a "w" into my text. I was finishing up my final year in Seminary, an endeavor I hoped would propel me to a lead pastor role in a church. In addition to that little twitch, I noticed that my fingers were becoming increasingly less agile as I played my guitar. A noticeable trembling arose while I pressed the strings, affecting my usual nimble fingering on the guitar. At the time, I was a worship leader by occupation at a church in Kirkland, Wa. and had made a life-long career of music performance and studio work on my guitar for years before as a missionary in Thailand. The twitches and trembling were concerning, but I figured they might have been just a part of normal aging.
Around May of 2023, the twitching and trembling turned into a vague but persistent tremor in my left hand, accompanied by stiffness. By this time, in God's amazing grace and foresight, I had been hired to pastor a church in Vacaville, Ca. with a starting date in early August, 2023. In my last few weeks leading worship in Washington, I noticed that I was having difficulty moving my fingers from a G to Bm, a fairly simple chord change. In fact, I really had a hard time forming any chords that required all four fingers on the fretboard. As well, it was becoming difficult to type. Still, I thought, "Well, my fingers are shot along with my ears (which were shot long before this all started happening), so I guess God knows what he's doing moving me into a pastoral role where I'll preach rather than play guitar!"
The Initial Diagnosis: Benign Essential Tremor
In the fall of 2023, just months into my new role as head pastor at CPC, my vague left hand tremor had become quite noticeable, so I had the doctor take a look. After a visual inspection and a couple movement tests, he confidently confirmed the tremor as "Benign Essential Tremor," a natural progression of aging. I thought, "Good it's that, and not the alternative..." as the word "Parkinson's" stubbornly hung around in the back of my mind.
By the spring of 2024, my "Benign Essential Tremor" had progressed to a constant, uncontrollable tremor accompanied by severe stiffness in my left fingers and arm, such that my arm swing had disappeared and I had lost about 90% of my guitar playing ability. What used to be so easy and fluid on the guitar had become next to impossible. I felt propelled back to my first year or two of guitar playing when everything was foreign and hard to master. Except I was regressing now, not improving.
Later that same year I revisited the tremor with the doctor and he was very concerned with the progression. He noted how it had gone from a vague tremor to a noticeable, persistent tremor with stiffness. With the worsening stiffness and tremors, I decided to check in with a neurologist in early 2025. The neurologist took one look and immediately diagnosed Parkinson's but wanted to confirm that with other tests. She ordered a DAT scan, which measures the level of dopamine uptake in the brain. Parkinson's tremors and stiffness, along with many other symptoms, are the result of diminished dopaminergic production in the brain (loss of dopamine).
The DAT Scan
A DAT scan is a non-invasive brain imaging test kind of like an MRI. The scan comes in three steps and two appointments, spanning about 3/4 of a day. The first step is a single dose of Potassium Iodide. This a one-time prescription that you to take on the day of your DAT scan, about 1 or 2 hours before the first appointment. The Potassium Iodide protects your thyroid from the radioactive tracer injection. At the first appointment, once the Potassium Iodide has had time to circulate, you are injected with a cold radioactive tracer. This was the worst part of the entire process for me. The fluid was extremely cold. The nurse forced the fluid into my vein on my right arm, and the pressure felt like my vein was going to burst. I told the nurse it was painful. She told me that she had to keep the pressure on the syringe, and the cold solution sometimes irritates the lining of the vein. After the injection, you have to wait for the tracer to circulate through your brain and body before the DAT scan--- about 4-6 hours. So, I grabbed some lunch and went back to my truck in the parking lot, where I ended up spending several hours of that time chatting with an older lady whose husband was undergoing a bunch of heart-related tests after a heart attack episode-- I was able to encourage her and just help take her mind off her own trouble, which helped me take my mind off mine!
Finally, after about a 5 hour wait, I checked in for the 2nd appointment, the DAT scan itself. Here, they bring you into a separate, isolated room. There's a flat bed with a largish camera attached to a rotator with two rectangular boards, like two small table tops and a space in between. You lay down on the bed face up, with your head propped on a donut shaped pillow between the two boards. You're not inside anything, but the two boards are situated within a couple inches from the nose and the back of your head. The nurses leave the room when the scan starts, so you're by yourself during the entirety of the scan. The scan takes about 40 minutes. You cannot move your head during the entire time.... good luck if your nose itches. I wouldn't dare fall asleep because I always twitch like crazy just before I doze off. The machine rotates about an 1/2" inch with a whirling click every 30 seconds or so, until it completes a full revolution around your head. While the board is over your face, you can't see anything. While the two boards are on either side of your head, you can stare at the ceiling. This hospital was kind enough to fasten a large picture of nature-- some mountains and trees-- to the ceiling-- I imagined I was there... but then my imagination turned dark and I was warding off a bear attack- ha! When the scan finished, the nurses came back in and told me to keep an eye on my health portal for the results, and that was that.
The Results: Severely Diminished Dopamine Uptake Consistent with Parkinsonism
A few days later, the results did come through. I was left to interpret the results myself, as my next appointment with the neurologist was months later. No problem, that's what the internet is for, ha! What I learned was that my DAT scan showed severely diminished dopaminergic uptake in the right putamen (the quadrant responsible for dopamine production and distribution), and mild diminishment in the left quadrant. This DAT scan result corresponded with my left leaning symptoms and lack of symptoms on the right side. Essentially, that meant it wasn't Essential Tremor, as I had prayed, but Parkinsonism. Essential tremor does not correspond with the dopamine loss or stiffness I was experiencing.
I was extremely disappointed, but hopeful. The Scripture says in 2 Cor. 4:8-12: "8 We are hard pressed on every side, but not crushed; perplexed, but not in despair; 9 persecuted, but not abandoned; struck down, but not destroyed. 10 We always carry around in our body the death of Jesus, so that the life of Jesus may also be revealed in our body. 11 For we who are alive are always being given over to death for Jesus’ sake, so that his life may also be revealed in our mortal body. 12 So then, death is at work in us, but life is at work in you."
For me, "death at work" is Parkinson's. I can feel its death grip, slowly working its cold, cruel progression throughout the entire left side of my body. As of this date, its death grip has progressed to my left leg and foot. Such that I am unable to tap my left foot fluidly like I can my right foot-- it's all erratic and rhythmless. I can feel the weakness as well, affecting my balance, but not yet to the point where I feel unstable. By God's grace my dominant right side remains unaffected, though I know by the progression of this cruel disease, I'm living on borrowed time as far as that goes. Still, the life of Jesus at work within me is strong, such that I have resolved to be an inspiration to those whose lives have been upended by tragedy and disease. Parkinson's may defeat my body, but it won't defeat my soul.
Not a Terminal Diagnosis
Parkinson's is not a terminal disease. You don't die from Parkinson's. You die with Parkinson's. Typically, people with Parkinson's die from other complications, such as pneumonia, or from a fall-- though, I guess you could say Parkinson's was the culprit. Further, my Parkinson's is early onset, as my first noticeable symptoms came when I was 51. Early onset Parkinson's has a different rate of progression than later onset, depending on the health and lifestyle of the patient. I am very healthy otherwise, and have led a very active, fulfilling life. My work is fulfilling. I am with a lot of people and engaged in community and social life. My well-being is very high. These are all extremely important for slowing the rate of progression for Parkinson's. The worst thing you can do with a Parkinson's diagnosis is isolate yourself in depression and darkness.
Carbidopa/Levodopa & Macuna Pruriens
Beginning around April of 2026, I decided to start a minimal dose of carbidopa/levodopa (the gold standard of Parkinson's medication since about 1970... my birth year, interestingly). I am presently taking 50mg of carbidopa with 100mg levodopa along with a natural supplement called Macuna Pruriens. Macuna is a natural source of levodopa processed from the tropical velvet bean. In Macuna, Levodopa amounts vary, since the supplement is not-standardized. I have found a reputable brand that seems to yield consistent results. Right now, I am getting around 360mg levodopa equivalent from Macuna, twice per day. Once in the morning and once in the evening.
Why take a non-standardized supplement as opposed to just taking the equivalent dose of carbidopa/levodopa (C/L)? Well, C/L is a chemically created levodopa produced in a lab. Yes, it's very effective and reliable. However, Macuna is nature's levodopa produced organically by a plant. Macuna's levodopa has been scientifically proven to last longer (called 'on-time') than laboratory levodopa (reports say about one hour longer), and the dyskinesia (involuntary swinging) associated with long term C/L use has been found to be less intense or non-existent in people who use Macuna (https://pubmed.ncbi.nlm.nih.gov/28679598/). In my case, this combination does not take away the tremor entirely but it does help my stiffness tremendously. I'd say by about 50%. I can actually type with my left hand now, though with a lot of twitchiness. I can play my guitar with a little more fluidity, though my true performance days are long gone.
Moving Forward with Parkinson's
Every Parkinson's case is different. The symptom severity and rate of progression varies widely for everyone. I can't say how severe my symptoms will be next year or in five years. My hope and prayer is, first, that Jesus will heal me, whether by a miraculous touch of his hand or through medical advancement. Second, my plan is to continue living my life as I would otherwise. More than that, I look at life differently now. Parkinson's means that I appreciate my loved ones even more. It means that I enjoy my work and hobbies even more. I paint, I play with photography, I woodwork, I write, I create. I look for the beauty of life even more. I hate less and love more. I walk four steps instead of two. I do the things I've always thought and wanted to do now rather than later--- in fact, that's what those apps are about-- I had always wanted to build computer programs ever since I was a kid. Really, Parkinson's means that I live and enjoy life in the moment I have now. I wake up each day and tell myself, don't worry about tomorrow (Jesus said something like that), just enjoy today. Look around and be blessed by all God's blessings today. Why? Because today is the day that the Lord has made, and I will rejoice and be glad in it. (Ps. 118:24). That is how I live moving forward with Parkinson's.
-------------
Parkinson's Facts
Parkinson's disease affects an estimated 10 million people worldwide, with 1 million affected in the USA. It is projected to double in the next 25 years. The overwhelming majority of new cases (about 90%) are first generation with no family history. While research is ongoing, environmental toxins are thought to be increasingly more instrumental in the development of Parkinson's.
My (Known) Exposures
-> While I cannot definitively prove what caused my Parkinson's- here is my history of exposures that I think accumulatively contributed to it:
- I lived near a large farm as a kid and used to play regularly in the corn fields, which were sprayed heavily with pesticides.
- I worked for about 5 years in my early 20's in an auto shop and was exposed daily to used motor oil and industrial grade solvents. I never bothered to protect myself.
- I lived in Bangkok and was exposed to constant heavy air pollution, especially from the black smoke billowing buses that constantly drove down the road I lived on. It was so bad I would wake up coughing at night and had a constant itchiness in my throat.
- When I lived in Thailand, I used the water from the tap to brew my morning coffee every day. I drank a pot of coffee (4-5 cups) a day at that time. Drinking water from the tap is not advised in Thailand as it contains pollutants and heavy metals. This is what I think contributed the most to my Parkinson's.
- I was double vaxed during the pandemic and then caught COVID twice. My first Parkinson's symptoms arrived in the same time frame as the shots and my COVID illnesses and final booster.
Probably not a single one of these caused my Parkinson's, but all of them most likely contributed to it accumulatively. I don't have a family history of Parkinson's.
Learn more about Parkinson's
Support Parkinson's Research:
Michael J. Fox Foundation for Parkinson's Research