The Long Hello: Tracing the First Signs of Parkinson’s

I remember the day it all started. I was at a professional conference, staring at a table of snacks and coffee, feeling nauseous and drained. I canceled my evening plans and went home, not realizing this was the beginning of a three-year stretch of GI issues. Nausea, bloating, and so much gas—it made eating, traveling, and even showing up for life hard. Grad school nearly broke me, as I lived in a constant state of discomfort due to these G.I. symptoms.

Then, during my final year, a friend mentioned a colon cleanse he was doing. I rolled my eyes but figured, “Why not? I can’t feel worse.” One part of the cleanse included a senna tea, and—shockingly—I started to feel better. Half a dozen medical tests had turned up nothing, but when I told my GI specialist about the tea, he called it idiopathic constipation and recommended MiraLAX.

Eleven years after that conference, and eight years after I started MiraLAX, I was in a Yankee Candle store with a friend. She handed me a candle and asked what I thought. I sniffed. “I don’t really smell anything.” She looked at me, surprised. I didn’t think much of it—candles weren’t my thing. I’d never even heard the word hyposmia.

Fast forward a few more years: stiffness in my neck, a tremor now and then, a right arm that didn’t swing like it used to. One thing at a time showed up and entered my world. Nothing that screamed “Parkinson’s.” I just rolled with it.

Then came the apathy. Not depression—I wasn’t sad or hopeless—I just couldn’t get myself going. The high-achieving, mountain-climbing, project-managing me had vanished. I still did my job, hung out with friends, paid the bills—but everything took more effort. I forgot things. Lost my train of thought in meetings. Packing for a trip became overwhelming. I had to check if I’d actually paid the electric bill or just thought about it.

My doctor had already ordered an MRI when the tremor first appeared—came back showing no major concerns. But soon after I was back in her office with a new list and the results of Google and YouTube searches: apathy was at the top of that list along with stiffness, tremor, loss of smell, and my long standing battle with constipation. She ran some neuro checks, watched me walk, then suggested a levodopa prescription and a referral to a neurologist.

I took the prescription, but honestly, what I really wanted was to feel like me again. I wanted the spark back, the drive, the energy to juggle a dozen things at once like I used to.

Over the next year, I learned that version of me wasn’t coming back.

But I did respond well to the levodopa. The stiffness in my neck eased up, my right arm would swing again—at least for a while—and I could actually bounce up a flight of stairs instead of dragging myself one step at a time. My gait smoothed out, and I had more stamina to hang out with friends. It was a relief.

Seven months later, I finally saw a Movement Disorders Specialist. The appointment felt like a long time coming—too long, honestly—but at least I was sitting across from someone who really knew what to look for.

After a thorough exam, they noted cogwheel rigidity and bradykinesia. Subtle, but there. One detail that didn’t quite fit the textbook picture was my tremor. It wasn’t a classic rest tremor—the kind most people associate with Parkinson’s. Mine showed up when I held my arms out or tried to stay still in a certain position. A postural tremor. It was another layer of complexity, a reminder that Parkinson’s doesn’t always follow the rules. But even with that variation, the overall pattern still pointed in a clear direction.

And when we talked through my response to levodopa—the way my stiffness eased up like clockwork after each dose—it all started to line up. The MDS made a few adjustments to my medication—small changes, but ones that could make a difference—and scheduled a follow-up for six months later. 

One thing the medication didn’t touch was the apathy. That stayed—quiet, heavy, and hard to explain. Of all the symptoms, it’s been one of the most frustrating to live with.

I don’t have a perfect, polished takeaway to tie all this up. What I do have are the small things I’ve found that help me navigate the day-to-day: keeping music playing in the house lifts my energy more than I’d expect. Sticking to a routine helps. Getting outside, even for a short walk or a quick conversation with someone, can shift things. I’ve changed my eating habits, and I’ve made exercise a non-negotiable in my life.

As for accepting the diagnosis—well, that’s still a work in progress. Some days I’m okay with it, other days not so much. Ask me in the morning and I might be fine. Ask me again at 4 p.m. and it might be a whole different story.

The most important thing I’ve done, hands down, is reach out to others in the Parkinson’s community. Those connections have become a lifeline. They’ve offered me encouragement, perspective, recipes, hacks, humor, and a level of understanding I didn’t even know I needed.

Whatever comes next, I know I won’t face it alone. I’ve got a solid group of people walking this road with me—and that makes all the difference.