The Road to Diagnosis: My Fight for Answers with Young-Onset Parkinson’s

Where did it all begin? That question holds just as much weight as saying, “a cure is right around the corner.” But I want to share a little about the trials and tribulations that led me to a Parkinson’s diagnosis.

First and foremost, not everyone goes through the hell I went through to get a PD diagnosis. But when you’re in your 30s, that’s the last damn label they want to give you.

My earliest symptoms showed up right around the time I turned 30. Let’s be real—I was invincible back then. Running 50 miles a week, working full-time, newly married. We were young, happy, and free. My right leg would shake at night when I fell asleep, but I figured it was just from running, working, and life.

I hadn’t been to a doctor in years. In fact, between moving away from home at 18 and my early 30s, I think I saw a doctor maybe three times. So what if my leg shook a little? Had to be from running, right?

Deep down, though, I knew there was more to it. But I kept running marathons, crushing races every weekend. I even told my wife early in our relationship, out of the blue, “You’re going to end up having to take care of me when I get older.” She rolled her eyes, like, “What the hell are you talking about?” But life moved on, and the leg shaking came and went.

The next big red flag came the summer we signed our house contract. I was teaching at a school run by a piss-poor principal who straight-up lied to us, saying we couldn’t have planning time due to “budget issues.” Anyone who knows teaching understands how vital planning time is, especially when you’re teaching remedial middle school math. But I was stuck teaching a full day with only a 24-minute break for lunch—and it kicked my ass from day one.

That’s when the dizziness started. Random moments throughout the day where I felt like I might fall over. That finally pushed me to see a doctor. They ran some tests, blamed it on stress, and sent me on my way.

Then came the constant bathroom trips. I was peeing every 47 minutes like clockwork. Not normal, but whatever.

After that brutal school year, I moved to a better job, and my body calmed down. Even the leg shaking subsided. But I still had that nagging feeling in my gut that something was coming.

A smaller but memorable moment happened after a run when we stopped at Lowe’s. I got insanely cold in the store, shivering like an idiot. Looking back, I think that was the first time my body just gave in.

Then came the real shit show—a series of ER visits because I couldn’t stop shaking. One night, after shaking uncontrollably in bed, my wife took me to the hospital. I was exhausted and confused, completely out of my element. I’d just gotten over a terrible cold, missing a marathon, then two weeks later ran Gasparilla Distance Classic (four races, 31 miles over two days). And now, here I was, lying in a shitty little hospital unit with a fall bracelet on, my wife having to empty my damn pee jug because I wasn’t allowed to walk to the bathroom.

The doctors were convinced I was having seizures. They put me on Depakote, which did a number on my body. Over the next few weeks, I spent eight days in the hospital while they ran tests, pumped me full of meds, and tried to stabilize me.

To make things worse, I had adult braces (don’t judge), so there was too much metal in my mouth for an MRI. My teeth were seriously messed up, so instead, doctors ran every other test imaginable, just throwing meds at me to see what stuck.

Eventually, they took me off seizure meds and put me on Clonazepam, which was basically the pharmaceutical equivalent of smoking a joint. I wasn’t getting better, but at least the meds stabilized my movements.

The neurologist I saw in the hospital wasn’t covered by my insurance (of course), so I had to find my own. And that’s when the real circus began.

Neuro #1? An absolute asshole. He literally made fun of me. I ended up back in the hospital, downtown Orlando main campus, and this old quack comes in, starts questioning me, then has me count backward by sevens. I mess up once, and instead of helping, he mocks me: “Wow, you must be a really bad math teacher.”

I told him to fuck off and demanded to be discharged immediately.

Neuro #2? A “prominent” MDS in Orlando. My appointment was at 10 AM. She finally saw me at 12:30 PM, spent five minutes with me, and said, “Sometimes your brain just forgets things.” Then she told me it was all in my head.

Now I was pissed. One doctor laughed at me, another dismissed me, so I went for a third.

Neuro #3 actually ran tests. Bloodwork, CT scans, and even helped me figure out an MRI (I had my braces temporarily removed). When we sat down to review the results, she admitted, “I can’t give you an answer, but you should go to Mayo Clinic or USF Health.” She confirmed that something was definitely going on neurologically but didn’t know what or if it was permanent.

That appointment was both a relief and a punch in the gut. No diagnosis, but at least I knew I wasn’t crazy.

Mayo was booked solid for over a year, so we went to USF. The first few appointments were with a general neurologist. She reviewed everything and said, “I don’t have an answer yet, but we’ll figure it out. Whatever this is, you’re going to be dealing with it for a long time.”

I thought, okay, a few months, some pills, and we’re done.

Then came the tests. ALS, MS, Lupus, you name it. All negative. I started researching and realizing this was for life. Then one day, the doctor asked, “How long have you had rigidity? Why don’t you swing your arm when you walk?”

I was like, “Huh? What are you talking about?”

She pulled in their Movement Disorder Specialist (MDS) for a quick consult. This MDS walks in and basically gives me a DUI test, then starts firing off questions:

• Why do you drag your leg?
• Why don’t you swing your left arm?
• How long have you had rigidity in your neck and wrists?
• How long have you had balance issues?

I had no clue what she was talking about. But I knew where this was going. She prescribed Sinemet. First dose, and my wrist stopped twisting at night. That was it. That was the answer.

Two weeks later, she officially called it Parkinson Disease. Six years after my first leg shake. Two years after my first ER trip. And there it was, staring me in the face.

Fucking Parkinson’s Disease.

It was a journey—a fight filled with misdiagnoses, bullshit doctors, and a lot of frustration. But at least I finally knew what battle I was fighting.

Or so I thought.