The Top 5 Things I Wish People Knew About Young-Onset Parkinson’s

By Richie Pikunis
Still Shaking. Still Showing Up. Still Loud as Hell.

Let’s cut the fluff. Parkinson’s at 24 isn’t quirky or inspirational. It’s not the start of a feel-good Netflix series where I overcome and inspire and ride off into the sunset with a neatly tied moral. It’s a sucker punch to the gut, a sledgehammer to your plans, and a mindf*ck of epic proportions.

People like to think Parkinson’s is an old man’s disease. Something that arrives after retirement, after life has already been lived. What they don’t know is that it can show up while you’re still trying to live. While you’re still building. Still dreaming. Still believing you have time.

Well, I had plans too. I was in law school. Bright. Ambitious. Broke, but bold. And then Parkinson’s came for me before my first real job, before my first mortgage, before I had the chance to figure out who I even was. And it didn’t just take my health—it took my identity, my path, and for a long time, my hope.

So here it is—no fluff, no filter. The five things I wish people really knew about Young-Onset Parkinson’s. The stuff you won’t find in the pamphlets. The stuff that might just help someone out there feel seen.

1. It Doesn’t Just Steal Your Movement—It Steals Your Timeline

Parkinson’s doesn’t just hijack your body—it hijacks your life schedule. Your twenties? Supposed to be about discovery, dating, debt you regret, and figuring it all out. Mine were filled with neurologists, meds, muscle rigidity, and watching people my age sprint ahead while I sat on the sidelines shaking and pretending I wasn’t angry about it.

You grieve your timeline. You grieve the normal. And nobody throws you a funeral for the life you lost, because technically—you’re still here. But inside, parts of you die early. And the mourning is private, invisible, and relentless.

2. It’s Not the Disease That Breaks You—It’s the Side Effects

This one’s for the fine print nobody reads.

Let’s talk dopamine agonists. These little pills were supposed to be the magic solution. What I got instead? A nearly decade-long descent into the darkest corners of my own mind. I’m talking near-catatonia. Hallucinations. Depression so deep I couldn’t tell where I ended and the darkness began. I lost years. I lost weight. I gained 50 pounds of fluid and a thousand yards of regret.

You want impulse control? Try explaining to your loved ones why you blew through savings gambling at 3 a.m. Or why you cried for 45 minutes because a YouTube video buffering made you feel abandoned. That’s the fine print. That’s the “possible side effects include losing your damn mind.”

And we take it. Because we have no choice.

3. You Will Be Told You’re “Too Young” So Many Times You’ll Start to Believe You’re a Liar

“You’re too young to have Parkinson’s!”
“You don’t look sick!”
“Are you sure it’s not anxiety?”

Let me tell you something: hearing you’re too young for a disease you definitely have is a form of gaslighting that messes with your soul. It delays diagnosis. It delays support. It delays your ability to actually process what the hell is happening.

I had a neurologist once look at me and say, “You’re one of the youngest cases I’ve seen.” And for a second, it felt like an achievement. Like a badge. “Congratulations, Richie, you’ve unlocked the degenerative disease leaderboard.” What a prize.

4. People Will Only Understand the Version of You They Can See

And Parkinson’s? It hides.

It hides behind smiles. Behind jokes. Behind the days you’re just quiet, not because you’re rude—but because your voice is so soft even you can’t hear it anymore.

People see you walking and think, “He looks fine.” What they don’t see is the inner stiffness. The freezing. The internal tremors. The sheer mental exhaustion of fighting your own body for hours just to appear “okay” for fifteen minutes in public.

They don’t see the hours after you get home, collapsed in a chair, too drained to move. Or the decision fatigue that comes from just trying to button a shirt.

They don’t see the cost of looking “fine.”

5. We’re Not Your Mascots, But We Sure as Hell Aren’t Fragile

I’m not your hero. I’m not your inspiration. I’m not your “look at how brave he is” storyline to make your Tuesday feel more profound.

I’m a person. I’m pissed off sometimes. I’m tired. I’m hilarious when I’m not crying. I’ve failed more times than I’ve succeeded, and I’ve fought through more hell than most people know how to spell.

But I’m still here.

And if you want to call that inspirational? Fine. Just don’t forget that what’s inspirational is the fact that people with Parkinson’s—especially young-onset—wake up every day and choose to keep going. We choose to stay in the ring. Even when the gloves don’t fit. Even when we can’t feel our damn hands. Even when we don’t know what tomorrow looks like.

That’s not bravery. That’s survival with flair.

Final Words (for now):

I didn’t choose Parkinson’s. But I choose to speak. To write. To laugh, even when it hurts. Especially when it hurts.

And if you’ve made it this far into my rant, maybe you’re curious, or confused, or craving connection. Good.

Because I just launched a newsletter—Voice Unshaken. It’s free. It’s raw. It’s my voice, when my actual voice won’t cooperate. And it’s got everything from Parkinson’s rants to weird weather takes to why humor is my favorite form of rebellion.

voiceunshaken.com/subscribe
Try it. Stay a while. Or unsubscribe. No hard feelings.

If you’re already subscribed—thank you. That means more than you know.
And if you know someone who might need this—someone living with Parkinson’s, someone caregiving, someone who just needs a little brutal honesty and a laugh—please share it with them. This voice isn’t just mine. It’s ours.

—Richie
Still Shaking. Still Showing Up. Still got jokes and receipts.