Dopamine Agonists: The Highs, the Lows, and the Hell No One Warned Me About

Let’s talk dopamine agonists. Or as I like to call them: the legal thrill ride no one should ever ride alone.

I’ve lived with Parkinson’s Disease for over three decades—diagnosed in law school, before my life had even fully begun. I’ve navigated tremors, depression, DBS, dyskinesias, and just about every detour Parkinson’s throws at you. Humor has been my shield and my oxygen, but one of the darkest chapters in my journey wasn’t a symptom of the disease itself—it was what happened when a medication meant to help me was taken away without warning, without a plan, and without my consent.

This isn’t a scare tactic. It’s a lived truth. And it nearly broke me.

The Seduction of the "Helper" Drug

Dopamine agonists like Requip (ropinirole), Mirapex (pramipexole), and Neupro patches are often introduced early in a Parkinson’s diagnosis. They’re pitched as dopamine’s friendlier cousin—helping smooth symptoms, especially for younger patients. That was me. A young guy with a new diagnosis and a long road ahead.

When I started on a dopamine agonist, I did see results. The tremor eased. I could function better. But what no one told me back then—what doctors hadn’t even begun warning patients about—was how profoundly these medications can affect the entire brain, not just the parts responsible for movement.

This was before any black box warnings. Before impulse control disorders were even part of the conversation. Before anyone warned us that a drug designed to ease suffering could hijack decision-making, mood, and personality.

For me, the changes crept in quietly: emotional instability, anxiety, impulse issues, and yes, shifts in my sexual behavior that felt confusing and out of step with who I was. I didn’t connect it to the medication. I didn’t know to. I just knew something was off.

The Crash: And I Never Saw It Coming

Then came the accident.

I was hospitalized unexpectedly. My neurologist—who knew my full history—was out of the country. The hospital neurologist, after reviewing my chart, made a snap decision: “You’re too young to have Parkinson’s.” And just like that, without tapering, without discussion, the dopamine agonist was pulled cold turkey.

No warning. No transition plan. Just… gone.

What followed was one of the most terrifying physical and emotional breakdowns I’ve ever endured. It started with the flu-like symptoms—nausea, hot sweats, body fatigue. But then came the real collapse: my motivation disappeared, my mood plummeted, my mind felt like it had gone dark. I wasn’t sad. I was vacant. I couldn’t think. I couldn’t feel. I barely wanted to exist.

It wasn’t “the blues.” It was a full-blown neurochemical crash—dopamine agonist withdrawal syndrome. And no one at the time recognized it for what it was.

It didn’t matter that I had Parkinson’s. It didn’t matter that I was in a vulnerable state, physically and emotionally. That one decision—to abruptly remove a powerful medication—nearly undid me.

The Lesson: These Drugs Aren’t Candy

Let me be clear: dopamine agonists can help people. I’m not here to villainize them. But they’re serious meds. They alter the brain in powerful ways. And removing them without a plan isn’t just negligent—it’s dangerous.

If you’re on one, or considering one, here’s what I’ve learned the hard way:

Don’t minimize personality or emotional changes—track them.

Tell your care team and family to watch for impulse shifts, mood swings, or risky behavior.

Never stop cold turkey. Ever. Tapering should be slow and supervised.

If hospitalized, make sure your neuro history is clearly communicated.

Be your own advocate—because in a crisis, your chart might not speak for you.

The Advocate in Me Speaks Loudest

I didn’t choose to come off that medication the way I did. It wasn’t planned. It wasn’t informed. It was a decision made by someone who didn’t know me or my case—and I paid the price.

Today, we have more awareness. There are black box warnings. There’s better guidance. But the danger is still very real—especially if your voice isn’t heard when it matters most.

I share this not to scare anyone—but to wake us up. This disease takes so much. We can’t afford to lose ourselves to the treatment too.

I’m still here. Still shaking. Still speaking. And still committed to making sure stories like mine aren’t swept under the rug.

Because someone out there needs to hear this before it’s their crash. And maybe, just maybe, this time they’ll be heard in time.

Richie Pikunis

Parkinson’s Advocate, Speaker, Author of Shaky Times

Diagnosed in my 20s. Medically gaslit in my 30s. Still showing up in my 50s.

And still telling the truth—one shaky sentence at a time.

33 Years In: 10 Hidden Parkinson’s Symptoms No One Warned Me About (FB 33 Years In: 10 Hidden Parkinson’s Symptoms No One Warned Me About

By Richie Pikunis

(Still Shaking, Still Showing Up) (Facebook May 16.2025)

Let’s be honest. When you first hear “Parkinson’s,” you think shaking. Maybe a little stiffness. Maybe you picture an older guy with a cane and a quiet voice.

But after 33 years of living with it, let me tell you—Parkinson’s is a sneaky little bastard. It’s not just about tremors. It’s a full-body, full-life, full-mind experience. And some of the hardest stuff? You can’t even see.

So here it is. The stuff they don’t always tell you. The Top 10 Hidden Symptoms of Parkinson’s that most people don’t talk about—but you’re definitely not imagining.

1. Anxiety That Feels Like You're Jumping Out of Your Skin

No, you're not “just stressed.”

Parkinson’s literally messes with your brain chemistry—especially dopamine and norepinephrine. Anxiety isn’t a side effect. It’s part of the condition.

I’ve felt full-body panic with no clear reason. Just boom—fight or flight with nowhere to go.

2. Depression That Doesn’t Look Sad (apathy)

Sometimes it’s not tears. It’s flatness. Nothing feels worth doing. No spark. No drive.

This isn’t weakness—it’s dopamine deficiency. And guess what? It can show up years before you even get diagnosed.

3. Loss of Smell

Yeah, weird, right? I haven’t smelled a damn thing in decades. Coffee, cologne, even my dog after a bath—gone.

Most people never link this to Parkinson’s, but it’s often one of the first clues.

4. Constipation That Feels Like a Personal Vendetta

Parkinson’s slows your gut like it slows your feet. I’ve had battles with the bathroom that felt longer than a courtroom trial.

Pro tip: magnesium, hydration, fiber, movement, and patience.

5. Sleep Disorders That Could Star in a Horror Film

Talking, yelling, or even acting out dreams (REM Sleep Behavior Disorder)?

Been there. Woke up punching a pillow mid-dream courtroom cross-examination.

Sleep becomes a gamble—sometimes you get none, sometimes your body goes full Cirque du Soleil.

6. Masked Face (Flat Affect)

No, I’m not mad. No, I’m not bored. My face just doesn’t move the way it used to.

This one’s tough because people treat you like you're distant or cold.

You learn to narrate your feelings: “I am happy. My face just forgot.”

7. Dizziness or Orthostatic Hypotension

Stand up too fast, and the floor starts moving.

This isn’t clumsiness. It’s blood pressure regulation gone wonky—Parkinson’s can affect your autonomic nervous system, which normally handles that stuff behind the scenes.

8. Micrographia (Tiny, Cramped Handwriting)

Your pen becomes a liar. One minute you’re writing clearly, the next it looks like your signature went through a paper shredder.

And trying to fill out forms? That’s a full-contact sport.

9. Fatigue That Doesn’t Feel “Tired”

This is a bone-deep fog. A dragging of your soul across the floor.

It’s not from overexertion. Sometimes it hits even when you’ve done nothing all day.

One neurologist called it “central fatigue.” I call it “Tuesday.”

10. Loss of Confidence in Public Spaces

This one’s subtle—but brutal.

You start declining invites. Avoiding restaurants. Hesitating before walking into rooms.

Not because you can’t—but because you’re afraid of what might happen.

Freezing. Shaking. Falling. People staring.

And the worst part? Most folks around you have no idea what that inner battle feels like.

Final Thoughts (From a Guy Who’s Been in the Trenches 3+ Decades):

If any of this hits home—good. That means you’re not alone, and you’re not crazy.

Parkinson’s isn’t just a movement disorder. It’s a whole-person challenge, and the more we name it, the more we own it.

So don’t let the invisible parts make you feel invisible.

Speak up. Laugh through it. And find people—like me—who’ve been there.

We might shake. We might stumble. But we’re still standing.

And if I’ve learned anything in 33 years, it’s this:

Even when your body gets quieter… your voice can still get louder.

(Still Shaking, Still Showing Up)

Let’s be honest. When you first hear “Parkinson’s,” you think shaking. Maybe a little stiffness. Maybe you picture an older guy with a cane and a quiet voice.

But after 33 years of living with it, let me tell you—Parkinson’s is a sneaky little bastard. It’s not just about tremors. It’s a full-body, full-life, full-mind experience. And some of the hardest stuff? You can’t even see.

So here it is. The stuff they don’t always tell you. The Top 10 Hidden Symptoms of Parkinson’s that most people don’t talk about—but you’re definitely not imagining.

1. Anxiety That Feels Like You're Jumping Out of Your Skin

No, you're not “just stressed.”

Parkinson’s literally messes with your brain chemistry—especially dopamine and norepinephrine. Anxiety isn’t a side effect. It’s part of the condition.

I’ve felt full-body panic with no clear reason. Just boom—fight or flight with nowhere to go.

2. Depression That Doesn’t Look Sad (apathy)

Sometimes it’s not tears. It’s flatness. Nothing feels worth doing. No spark. No drive.

This isn’t weakness—it’s dopamine deficiency. And guess what? It can show up years before you even get diagnosed.

3. Loss of Smell

Yeah, weird, right? I haven’t smelled a damn thing in decades. Coffee, cologne, even my dog after a bath—gone.

Most people never link this to Parkinson’s, but it’s often one of the first clues.

4. Constipation That Feels Like a Personal Vendetta

Parkinson’s slows your gut like it slows your feet. I’ve had battles with the bathroom that felt longer than a courtroom trial.

Pro tip: magnesium, hydration, fiber, movement, and patience.

5. Sleep Disorders That Could Star in a Horror Film

Talking, yelling, or even acting out dreams (REM Sleep Behavior Disorder)?

Been there. Woke up punching a pillow mid-dream courtroom cross-examination.

Sleep becomes a gamble—sometimes you get none, sometimes your body goes full Cirque du Soleil.

6. Masked Face (Flat Affect)

No, I’m not mad. No, I’m not bored. My face just doesn’t move the way it used to.

This one’s tough because people treat you like you're distant or cold.

You learn to narrate your feelings: “I am happy. My face just forgot.”

7. Dizziness or Orthostatic Hypotension

Stand up too fast, and the floor starts moving.

This isn’t clumsiness. It’s blood pressure regulation gone wonky—Parkinson’s can affect your autonomic nervous system, which normally handles that stuff behind the scenes.

8. Micrographia (Tiny, Cramped Handwriting)

Your pen becomes a liar. One minute you’re writing clearly, the next it looks like your signature went through a paper shredder.

And trying to fill out forms? That’s a full-contact sport.

9. Fatigue That Doesn’t Feel “Tired”

This is a bone-deep fog. A dragging of your soul across the floor.

It’s not from overexertion. Sometimes it hits even when you’ve done nothing all day.

One neurologist called it “central fatigue.” I call it “Tuesday.”

10. Loss of Confidence in Public Spaces

This one’s subtle—but brutal.

You start declining invites. Avoiding restaurants. Hesitating before walking into rooms.

Not because you can’t—but because you’re afraid of what might happen.

Freezing. Shaking. Falling. People staring.

And the worst part? Most folks around you have no idea what that inner battle feels like.

Final Thoughts (From a Guy Who’s Been in the Trenches 3+ Decades):

If any of this hits home—good. That means you’re not alone, and you’re not crazy.

Parkinson’s isn’t just a movement disorder. It’s a whole-person challenge, and the more we name it, the more we own it.

So don’t let the invisible parts make you feel invisible.

Speak up. Laugh through it. And find people—like me—who’ve been there.

We might shake. We might stumble. But we’re still standing.

And if I’ve learned anything in 33 years, it’s this:

Even when your body gets quieter… your voice gets louder.

Top 10 Things I Wish I Knew at Diagnosis (from me, a guy who’s 33 Years In)

By Richie Pikunis

1. Build Your Team Early. At 24, I thought a neurologist was enough. I was wrong. You need a movement disorder specialist—and a crew: PT, OT, speech therapist, mental health pro, even a pharmacist who gives a damn. Don’t wait for things to fall apart to build your support net.

2. Exercise Like Your Life Depends On It—Because It Does.

I put it off, thinking I had time. The truth? Exercise is medicine. The earlier you start, the more brain function you can preserve. Cardio, strength training, boxing, stretching—make it your full-time side hustle.

3. Speak Up or Get Left Behind.

I was too quiet, too trusting. I figured doctors knew best. Nope. You have to advocate hard. If your meds don’t work, if your symptoms change, if something feels off—say something. Push. Be the annoying one. It could save your quality of life.

4. Track Everything.

For years I told docs, “I think I’m doing okay.” But I wasn’t. I just didn’t remember. Track meds, symptoms, sleep, mood, food. Patterns matter. And when you're in a fog, your notes speak for you.

5. The Non-Motor Stuff is No Joke.

I thought Parkinson’s was tremors and stiffness. I had no idea how bad depression, fatigue, constipation, sleep issues, and apathy could get. These are real. They’re part of the disease. And they’re often more disabling than the motor symptoms. Treat them seriously.

6. Talk About It.

I hid my diagnosis for years. I thought I had to be tough, silent. That just made it lonelier. Sharing your story doesn’t make you weak—it makes you powerful. And it invites people to support you in ways you can’t imagine.

7. Plan Like You’re Staying, Not Like You’re Leaving.

For a long time, I lived like I was disappearing. I wasn’t. You’re still here. Dream anyway. Date anyway. Build stuff anyway. Parkinson’s will take things, but it doesn’t get to take everything.

8. Fear Will Try to Steal the Present. Don’t Let It.

I used to hyper-analyze every twitch and symptom. It turned my days into anxiety loops. Be aware—but don’t obsess. You can live a full life while managing this. Don’t miss the beauty of today fearing tomorrow.

9. Look Into Clinical Trials.

I didn’t think I was “sick enough” to qualify. That was a mistake. Some trials are observational, some give access to new therapies. It’s one way to fight back—and maybe help the next generation too.

10. Get Your Paperwork—and Your People—in Order.

I know, this part sucks. But doing your legal and financial prep early will save your future self a ton of stress. Power of attorney. Disability benefits. Health proxies. Then forget about it and live.

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Bonus: Laugh More Than You Think You Should. Because laughter? It's free dopamine. And it reminds you: You’re still human. Still whole. Still here.