“Or: How I Accidentally Earned a PHD in Neurology.”
After my Parkinson’s diagnosis, I did what I’ve always done when something doesn’t make sense.
I started researching.
This is my default response to uncertainty. Some people burn incense and meditate. Some people seek sage advice from ye old Magic Eight Ball. I open browsers. Lots of them. All at once. With confidence.
I read. I listened. I asked questions.
I took notes, typed, because my handwriting now looks like it was produced by my anti-therapy dog Finley during an earthquake under a strict time limit.
I opened more website tabs than any reasonable adult should on Cyber Monday. At one point, my browser politely suggested I “restore previous session,” which felt less like a helpful feature and more like an intervention staged by people who love me.
From the outside, this probably looked productive. From the inside, it felt like trying to drink from a fire hose while Googling whether drinking from fire hoses is bad for Parkinson’s.
(Spoiler: the internet has opinions.)
Searching isn’t neutral when it’s personal.
Learning isn’t passive when the subject is your own nervous system.
Anxiety, it turns out, does not respect the refresh button, boundaries, or bedtime.
When Curiosity Quietly Turns Into Fatigue
There’s a moment, usually weeks or months after diagnosis, when curiosity turns into mental fatigue and frustration.
You’re tired of searching what looks like a legitimate Parkinson’s education or support site, only to realize it’s clickbait cloaked in concern, designed to sell an unsubstantiated service. The aesthetic lands somewhere between a website built on a Commodore 64 and a ransom note.
Listening to Parkinson’s podcasts that confidently contradict themselves within a single six-minute segment, often hosted by someone who sounds very sure and cites very little evidence.
Dodging pop-up ads from hucksters and charlatans promising “quick-fix” miracle cures, based on shoddy science and delivered with the confidence of a man selling miracle knives at a county fair.
Then, somehow, every online search leads to ads for:
• a cure supplement;
• a paid seminar where Parkinson’s is fully eradicated by day three;
• or a cyber sloth who insists they cured Parkinson’s during a lunch break and would be happy to explain it for three Bitcoin installments.
This information arrives with complete certainty and no scientific sourcing, often followed by, “Believe me, I was just as shocked as anyone when I discovered this,” which is apparently now considered a citation.
Somewhere, my college professors at Central Michigan University just felt a disturbance in the Force.
The Quiet Work No One Warns You About
No one warns you that learning about Parkinson’s can start to feel like a second job.
Except this job has no description, no training period, and no off switch.
You’re expected to absorb medical language, track subtle changes, make decisions, and continue acting as if nothing has changed.
Smile. Nod. Be “resilient.”
No one asks if you’d like to opt out, or at least receive a laminated badge that says, “Currently Trying My Best.”
When Communication Becomes Work
I type because it’s easier now.
Because my thoughts are crystal clear, but my speech doesn’t always get the memo, and my brain and mouth occasionally appear to be working on entirely different projects with no shared project manager or weekly status meeting.
No one prepares you for that.
There’s something isolating about being mentally 100 percent present and still working harder just to avoid sounding like Otis from The Andy Griffith Show after a long weekend at the Mayberry Pub. Drive me home, Opie.
You’re still you.
Your mouth is just buffering a bit.
The Loneliness of “Doing Fine”
One of the loneliest parts of early Parkinson’s is appearing okay.
You haven’t lost your mind. You’re still highly functional at work.
Which means people assume you’re fine.
They say, “You look great,” which is kind, but not especially helpful when your internal experience feels like a software update you didn’t authorize is running quietly in the background.
Meanwhile, you’re carrying:
• the realization that “normal” is now a moving target;
• moments where everything works, just not at the same time;
• a nonstop internal monologue with no editor and no mute button.
When Information Isn’t What You Actually Need
At some point, the problem isn’t a lack of information.
It’s saturation.
You’ve read enough. You’ve listened enough.
You could probably teach a small seminar titled “Parkinson’s: Things I Never Asked to Know.” Attendance would be mandatory. No one would be happy.
Yet none of that replaces the moment when you can say, “This feels strange,” and have someone respond, “Yes. It does.”
Not advice.
Not a solution.
Just recognition.
You don’t have to carry it all yourself. That weight adds up.
When you find that space, whether with another person living this, a trusted friend, or someone who listens well, something shifts. Not because anything is fixed, but because you’re no longer holding it alone.
Quietly, that makes the rest feel more manageable.
Not Solving Parkinson’s Today
You’re not going to solve Parkinson’s today.
Not with one more article, podcast, or “breakthrough.”
Oddly, that’s freeing.
The goal isn’t answers.
It’s enough understanding to keep moving without losing your balance, or your mind.
Some days, progress is insight.
Some days, it’s rest.
Some days, it’s closing the browser.
Parkinson’s doesn’t require constant productivity.
Sometimes the most responsible thing you can do is stop.
