Five years ago, I received the life-changing news that I have Young Onset Parkinson's Disease. At the time, I was transitioning from a job that involved flying around the world and delivering presentations to huge developer audiences in everything from IMAX theaters and stadiums to conference rooms and lecture halls. My new job would be closer to campus and more focused on the product itself. I had spent the past 25 years building my brand as an expert in the .NET software development. Suddenly, I had a different priority, and that was to raise awareness and funds for Parkinson's Disease research as I figured out how my life was going to change.
Five years later, I graduated from the well-known "honeymoon" period of Parkinson's Disease. There is a point of time when you feel like nothing has really changed, you just have a few "episodes" to manage when you tremor or cramp. Eventually, and this happens to everyone because it is a progressive and chronic disease with no cure, there is a point in time when it is your life, reminding you of its grasp the moment your eyes open in the morning, weighing you down as you drag your feet through the day, and doing its best to keep you awake when all you want to do is sleep at night. Now you are a "person with Parkinson's" and seek out those calm moments when you can almost forget you have the disease.
My wife, Doreen, joined me for a business trip to London in January of 2020. She was going to join me on a subsequent trip to Switzerland, but it was canceled due to the pandemic. In the same week that year, I...
received the news that I passed the interview and was being offered a position as a product manager
became a remote worker again due our campus shutting down due to the unknown virus that was rapidly spreading
It's tough to know what changes I experience come from the disease, or the drugs that treat the disease. Aside from the levothyroxine I take to treat an underactive thyroid that is full of nodules that threaten to be cancer if I don't stay on top of it, and the over-the-counter Prilosec equivalent I take for my gut, the rest of my medications all deal with dopamine in one way or another.
The Rasagiline keeps my body from sucking excess dopamine out of the blood stream because not all of my cells have been informed there's a critical shortage. Side effects include drowsiness, dizziness, depression, increased risk of skin cancer, increased risk of high blood pressure, increased chances of developing involuntary muscle control (dyskinesia), and it may create confusion, depression, and alter my mood.
The Ropinirole is a precursor to dopamine that is designed to encourage my body to produce more of its own. It was the medication I started with and used to be the only one. It's side effects include that possibility of spontaneously falling asleep without warning during the day, regardless of whether I'm driving or doing a handstand, dizziness, changes to mood or behavior, hallucinations, nausea, and compulsive behavior that leads to addictions, sometimes to problematic things like sex and gambling.
The Crescent Nebula (purple structure in upper left of the photo if you're able to see it) is the expanding shell of a collapsed star that happens to look like a brain. I wonder what would happen if we fired some Ropinirole into the molecular field?
The Carbo-levodopa is the main player and has been the centerpiece for treatment with medication for decades. It is dopamine, and the kind I take is slow release (RYTARY). Side effects with this gem include the same as the others (dizziness, nausea), obsessive behavior and increase risk of addiction, hallucinations, involuntary muscle movement, and more.
Every medication I take is both mind-altering and potentially mood altering. Fortunately, I am intimately familiar with depression after experiencing it as a teenager and young adult. When I feel deep, overwhelming despair or unexplainable anxiety and a sudden rush of fear, I often take a step back to assess whether I feel those emotions make sense or not. Most of the time they don't.
"Hi, my name is Jeremy. I'm 17 and angry at the world. I feel worthless, have no self-esteem and worry that I'm going to end up with no friends or loved ones."
Other symptoms I experience are tougher to deal with. On a daily basis I might face one of:
Waking up so stiff it's tough to roll out of bed
Lower back pain
Hip pain
Waves of nausea that come and go
Sudden bouts of dizziness
Tremors that sometimes leave me exhausted because they don't stop for hours straight
Cramps in my left hand so severe I can barely type
Cramps in my feet (specifically my toes) that are so severe I have to wear "toe guards" to keep them from contorting into a tangle
Sudden, intense waves of anxiety
Forgetfulness
Intense fatigue
Disorientation - the feeling like I'm not fully aware of where I'm at
Obsessive/compulsive behavior that usually manifests in me completing some late-night project such as writing a blog post and refusing to go to bed until its done
My simple justification is that my fingers are working tonight, so I want to type as much as I possibly can.
I remember a time not long ago when everyone asked me how I was so productive and get so much done in a short span of time. They don't ask me that as often anymore.
My apathy makes it difficult to prioritize the things I should do - like shower, brush my teeth, and exercise - over the things I want to do. I didn't have that issue before, but now I have to be even more intentional with my daily routines. The obsessive/compulsive behavior fortunately has not led to sex addiction or gambling for me. Instead, I find myself drawn into projects that I don't want to step away from until they're done (sort of like this blog post). On the bad end of the spectrum, there was a night last week when I didn't go to sleep. On the good end of the spectrum, it's because I was watching this:
Believe it or not, I am very grateful and blessed in spite of Parkinsons. I work for a company that has shown me the utmost respect for my disability, offered accommodations including special hardware to overcome some of the limitations it creates, and empowers me to integrate my passion for Parkinson's into what I do. I live in a beautiful town on a beautiful coast with amazing neighbors. I've traveled around the sun every year for over a quarter century with my wife. Speaking of the sun, I also embarked on a new hobby that includes doing fun things like photographing the sun. Here's a photograph I took through a special telescope in early May:
That big "gash" is a massive sunspot the size of 15 earths designated AR3664. I didn't know it at the time, but later that day this sunspot would produce several X-flares that resulted in a pair of Coronal Mass Ejections, big blobs of electrically charged particles from gas and plasma on the solar surface. Not only was it aimed directly at earth at the time, the second ejection caught up with the first to create a more massive event. It struck us directly and we had one of the most significant geomagnetic storms in history.
I was at a dark site north of Lincoln City getting ready to shoot a nebula when I realized that the sky was glowing. II stepped away from my telescope, grabbed my camera and started taking 10-second exposures. I ended up shooting all night.
Some might say I have been incredibly lucky, but I feel incredibly blessed. I also feel fairly strongly that if you toss a bucket of Scrabble chips on the ground every day for millions of years, it will never result in a complete sentence. Thermodynamics tells us things tend to move towards entropy or chaos. Information theory posits that every signal must have a source, and information degrades over time, it doesn't become more or clear.
The belief that life formed spontaneously is a strong act of faith when we can't even create it under perfect conditions in the lab. Yet we're willing to assume that in some random way some set of material somehow chose to defy the laws of physics and somehow form a structure that resisted entropy and could also replicate itself and so forth. There is the belief that humans are just electrified gobs of chemical goo, and our thoughts are just meaningless illusions caused by electrical currents. I personally find it interesting that despite all of the organic compounds we find in the universe, and the hype that goes with proclaiming "life is just around the corner" anytime we find water on another planet, the search has so far come up with nothing.
My endurance comes through my faith and my knowledge that Jesus is with me. Starting in Matthew 11:28, Jesus shares an insight. He says come to me, those of you feeling tired and stressed under the weight of responsibility, and I will give you rest and comfort. Join with me and learn from our synergy and I will comfort you. I am gentle and lowly in heart and your soul can find rest here. Our companionship will come easily, and I will not be a burden. I have found that be true time and time again.
After my diagnosis, I threw myself into several commitments. I joined a group at our work that focuses on providing support and community for people with disabilities. I joined the board of directors for a non-profit that focuses on people diagnosed with Parkinson's Disease at a younger age. I was on the steering committee for one of the first conferences solely focused on supporting those who suffer from YOPD and was invited to emcee the event. I started fundraising. I launched a podcast. I created this blog.
I'm thankful for all of these things, but while they were sustainable during the "honeymoon period" I realized recently that I needed to do a better job of prioritizing my time. I was also trying to maintain multiple online "personas" and trying to figure out whether a post should happen in my "Parkinson's identity" or my "Jeremy identity." It suddenly struck me as absurd and a reflection of how I perceived the disease in the early days vs. the toll it takes on me today.
When our non-profit merged with a parent organization, I decided not to pursue a position on the new board. I stepped back from my role in the organization at my work, and I did not fundraise this year. A few days ago, I also canceled my domain registration for the "You, Me, and PD" site and "retired" my social media accounts and YouTube channel. I preserved all of the content and will re-upload many of the videos to my own account.
In 2025, I realized it makes no sense to have separate identities. I am Jeremy, a Christian father, husband, software developer, photographer, and artist who has Parkinson's Disease. I am still committed to volunteer my time and talents to help raise awareness, fund research, and support the growing number of people who are diagnosed each day. I just plan to be far more strategic about it. I want to share more, not less, and not have to decide if this is a "Jeremy thing" or a "PD thing." It's a me thing. I think Kurt Cobain wrote it best when he said, "Come, as you are."
I have a lot to be thankful for. Last year, my wife and I made a new home here in Newport. We made new friends. I started a company to support my part-time passion for photography and art, I held my first exhibition, I shared some of my first presentations to the community about astrophotography, I partnered with the city to host a Star Party, I witnessed my first total solar eclipse with my daughter and experienced the Northern Lights so many times I feel like an experienced aurora photographer.
This is a celebration of my astrophotography-related accomplishments in 2024:
It sounds like a lot, but here's some hope: this morning, I woke up with no symptoms. I wasn't stiff, I felt normal, and I am even able to type the rest of this blog post because my hands are working fine. If you're curious, I can still clock about 90 WPM on a good day (I was at 120 - 130 before my diagnosis, but I have no complaints with 90). I don't feel like I'm not myself.
I believe that if I can be symptom free for even a few minutes, it is possible to discover a way to be symptom free for much longer. Although there may never be a way to reverse the damage that has been done to my body due to Parkinsons', I am optimistic we can slow it and stabilize it. We already know a few ways such as regular, intense exercise.
If you made it here either you are a true friend or genuinely curious and interested. Thank you for your investment of time and I pray that you received value from this. I wish you a very blessed and abundant year in 2025 and thank everyone for their support.
This feels right for my first blog post: being genuinely me and not thinking about Parkinson's as something separate, or my faith as something separate, or my art or my career. I appreciate you all and wish you all the very best.
Warmly,
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