07/12/2026
I Thought I Understood Parkinson’s… Until It Happened to Me
If you had asked me years ago what Parkinson’s disease looked like, I probably would have given you the same answer many people would.
An older person.
A noticeable tremor.
Slow, stiff movements.
That was about the extent of my knowledge.
I wasn’t trying to be insensitive. I simply didn’t know any better. Like most people, I only recognized the symptoms that were easy to see.
Then I was diagnosed.
Suddenly, I discovered there was an entirely different side of Parkinson’s that almost no one talks about.
The exhaustion that sleep doesn’t fix.
The brain fog that makes simple conversations or learning something new feel overwhelming.
The anxiety that can appear for no obvious reason.
The apathy that quietly steals motivation.
The pain and muscle stiffness that can affect almost every part of the body.
The sleep disorders that leave you tired before the day even begins.
The dizziness from blood pressure changes.
The balance problems that make every uneven sidewalk feel like an obstacle course.
And those are only a few of the many symptoms that people living with Parkinson’s experience.
The truth is that Parkinson’s is often described as a movement disorder because movement changes are the most visible. But for many of us, the invisible symptoms can be every bit as life-changing as the tremor or the slower movements.
That’s one reason Parkinson’s can feel so lonely. Friends, coworkers, and even family members may look at us and think we’re doing fine because they can’t see the fatigue, the pain, or the cognitive struggles happening beneath the surface.
Looking back, I don’t blame myself for misunderstanding Parkinson’s. Most of us only know what we’ve been shown. Unfortunately, what we’ve been shown is often incomplete.
Today, when someone tells me they thought Parkinson’s was “just shaking,” I understand why they think that.
I used to think the very same thing.
The more we talk openly about the invisible symptoms, the more understanding we create—not only for people living with Parkinson’s today, but for the millions who may one day receive the same diagnosis.
Before your diagnosis, what did you think Parkinson’s disease was? What surprised you the most after you began living with it?
