Parkinson’s in Hindsight: Piecing Together the Slow Progression
Knowing then what I know now wouldn’t have changed the ride. But it might’ve spoiled it.
After a Parkinson’s diagnosis, it’s natural to launch a forensic investigation into the past. You begin scanning your memory for early signs—anything you missed or dismissed. With many diseases, early detection is key to survival. However, so far, for PD patients, knowing sooner doesn’t significantly alter the outcome. It can help manage symptoms, but not the disease itself.
Michael J. Fox was diagnosed at 29. His first symptom was a twitching pinky finger. It was 1991, and very little was known about the disease. The prevailing strategy—especially for younger patients—was to begin treatment with dopamine agonists (like ropinirole or pramipexole) and delay starting levodopa.
Levodopa remains the most effective medication for symptom relief. But study after study has shown that no medication, including levodopa, slows the progression of Parkinson’s. While some promising disease-modifying treatments are now in clinical trials, 34 years after Michael J. Fox’s diagnosis, we still don’t have one on the market.
So, would knowing earlier have helped me? Maybe. However, it may also have cast a shadow over years that were still good. Still, looking back and sharing what I’ve learned might help the next person, or researchers looking for patterns that lead us toward better treatments.
I’m not suggesting that it is better not to know. Evidence indicates that the disease’s progression can be slowed and managed through a healthy and active lifestyle. Keep moving is the mantra of many Parkinson’s patients.
Cold as Ice
Parkinson’s progression isn’t linear, and it’s different for everyone. Some people never experience the “classic” symptoms. For others, the first signs aren’t motor-related at all—they show up as changes in smell, sleep disturbances, or gut issues.
Becky Muffler, a top contributor to the private Facebook group Life With Parkinson’s, worked with many of the group’s 51.5K members to compile a comprehensive list of symptoms from the patient perspective. She then used this listing to create a “Parkinson’s Symptom Iceberg.” It illustrates how much of the disease is invisible—not just to others, but often to the patient as well.
The listing is not intended to be a complete listing of all possible symptoms and side effects of Parkinson’s.
Note: The iceberg graphic isn’t meant to suggest that every person with Parkinson’s has every symptom, or that any one symptom automatically means Parkinson’s. If you’re concerned, see a neurologist, preferably one who specializes in movement disorders.
The Symptoms I Missed
In hindsight, I now recognize several signs that date back to the mid-1990s. Taken one at a time, they were easy to dismiss. But the clues began piling up, especially by 2018.
The Grip I Didn’t Know I Had
Sometime in the mid-1990s, I started experiencing something strange while driving. I’d suddenly realize I had a death grip on the steering wheel, so tight that my hand and arm would ache. I wasn’t anxious or angry. It just... happened.
I’d shake it off, thinking it was just a bad habit or a stress response. But now I know that an unconscious tight grip, or fist clenching, can be a symptom of Parkinson’s. It’s subtle and easy to ignore, especially when it comes and goes. Back then, it never occurred to me—or anyone else—that it might point to a neurological issue.
The Guitar That Wouldn’t Play
In 2018, I bought myself a guitar. I’d played electric bass and acoustic guitar in middle and high school, but hadn’t seriously picked one up since the early ’80s. I got a new Taylor acoustic guitar, found a great teacher named Joe, and started taking weekly lessons.
I was especially excited to learn fingerpicking, like James Taylor. I could read music, so I thought it would come back quickly. But it didn’t. My left hand was fine—it remembered the chords. But my right hand couldn’t keep up. In fingerpicking, each finger gets a string. My brain knew what to do. My hand didn’t.
Joe kept telling me I needed to practice more. I got the sense he thought I wasn’t putting in the time. But I was—every day. For over a year, I still couldn’t master a single complete song.
The Truck That Felt Off
In the spring of 2020, I traded for a nearly-new Chevy Silverado. It was a beautiful truck, though I’ll admit—I'm a Ford guy. The Chevy just didn’t feel right. The accelerator seemed stiff. Quick stops and starts took more effort than I was used to.
Driving relies heavily on kinesthetic memory. Most of us drive on autopilot—our brain coordinates our limbs without us thinking. But that truck felt like it needed more conscious input, especially from my right leg.
At the time, I chalked it up to knee issues. My right knee was bothering me, and I assumed that explained the driving difficulties.
When the Lights Went Out: Ocular Migraines
In 2021, I started having occasional ocular migraines. One episode was so bad that it sent me to the ER. It lasted for about an hour and disrupted my entire field of vision. At the time, it was frightening—I didn’t know what was happening or why.
My doctor referred me to an ophthalmologist, who assured me it was nothing to worry about. “I get these all the time,” she told me. She didn’t refer me to neurology, and no one suggested it could be related to a neurological disorder like Parkinson’s.
Looking back, I understand that ocular migraines aren’t a definitive sign of PD—but like so many symptoms, they’re part of a pattern. A signal that, while subtle on its own, may have carried more weight if it had been considered alongside everything else.
A Slower Recovery Than Expected
In May 2022, I finally had total knee replacement surgery. Rehab is long and painful, but something didn’t feel right with mine. My right leg stayed unusually stiff. I had trouble sleeping due to tightness in my quad. And even after rehab, I never quite got my old walk back.
One day, I saw President Biden walking across the White House lawn to Marine One. I thought, “Oh my God, he walks like I do!” My rehab tech laughed. “You had a knee replacement. You’ll get there.”
But a few weeks later, he noticed I wasn’t swinging my right arm when I walked. “Your gait is off,” he said. “We need to work on that.” Neither of us suspected Parkinson’s.
When Typing Became Hunt-and-Peck
As I mentioned in my previous post, the loss of typing skills was what finally prompted me to see a neurologist. I used to be a fast, efficient typist. But one day, I started hunting and pecking. I couldn’t coordinate my fingers.
Effective typing relies on procedural memory—your brain knowing how to move without thinking. It's the same as learning a musical instrument. Parkinson’s can damage this kind of muscle memory. About a year before I was diagnosed, I noticed my typing falling apart, along with a mild tremor on the right side of my body.
Visible Tremors—and a Misdiagnosis
Around the same time my typing declined, I began to notice a visible tremor in my right foot. I even have a short video that shows it. There was also a matching tremor in my right hand, though I never captured that one on camera.
Initially, the tremors were diagnosed as essential tremor, a more common and often benign movement disorder. It wasn’t until a DaTscan in January 2025 that my neurologist confirmed the real diagnosis: Parkinson’s disease.
Bradykinesia and Posture Changes
When I was finally referred to neurology, my wife, Christine, came with me to all my appointments. Her observations were eye-opening.
There were questions I answered one way, and she’d gently correct me: “Actually, I’ve noticed Chris has been moving more slowly.” She also mentioned a change in my posture. Both are common Parkinson’s symptoms—bradykinesia and postural instability—but I hadn’t noticed them myself.
The Invisible Symptoms
Alongside the physical changes, I’ve also experienced some of the non-motor symptoms commonly associated with Parkinson’s.
At some point—though I can’t say precisely when—I lost most of my sense of smell. Only strong odors seem to register now. It wasn’t something I thought much about at the time, but it’s one of those subtle losses that add up.
In the last couple of years, I’ve also dealt with bouts of insomnia. It’s not every night, but when it hits, it’s hard to shake. Sleep issues like this are common among PD patients, though I didn’t connect the dots until much later.
These symptoms don’t get as much attention as tremors or rigidity, but they’re part of the picture—and often show up long before a diagnosis.
Looking Back, Moving Forward
If I’d known in 2018—or 2008—what was ahead, I don’t think it would’ve changed my medical care all that much. There was no cure then, and there’s no cure now. But it might’ve made me anxious. It might’ve made me afraid.
Instead, I kept living my life. That guitar still frustrates me, but I’m glad I tried. That Silverado? Still a nice truck. And the life I’ve had, even with its challenges, was lived fully in those moments.
Now, I share this in hopes that it helps someone else—whether it’s a fellow PD traveler or someone doing the same kind of backward glance I’ve done. The signs aren’t always obvious. But once you learn the patterns, they’re hard to unsee.
🔜 Next Up: Now That I Know
Turns out, once you know you have Parkinson’s, you start seeing it everywhere—like when your hand shakes and you no longer blame caffeine. In the next post, I’ll share what I’ve noticed since my diagnosis, what I’m doing about it (hello, therapy trifecta), and how medications and regular workouts are now part of the daily routine. No cape required, but maybe a clipboard.
Thank you for sharing your journey with us. I have a really good friend who was just diagnosed with Parkinson’s. I will forward your post to her in hopes that it may help.