What Most People Get Wrong About Parkinson’s
When I was fifty-three, a neurologist looked at me and said bluntly, “You have Parkinson’s disease.” The entire consultation lasted eight minutes.
Eight minutes to change a life.
Like many people, I thought I knew what Parkinson’s was. I knew two names: Muhammad Ali and Michael J. Fox. I pictured tremors. Shuffling. A faint voice. And if I’m being honest, I also thought it was a death sentence.
I was wrong on almost every front.
Here’s what most people get wrong about Parkinson’s — and what I’ve learned after more than twenty years in the ring with it.
“Parkinson’s is just shaking.”
Parkinson’s is a movement disorder, yes. But it is far more layered than tremors.
When I was first diagnosed, I had no dramatic shaking. My first sign was subtle: I couldn’t throw strikes in softball anymore. After years of precision, the ball veered left every time. I assumed it was bad mechanics.
Parkinson’s can show up as:
Stiffness and rigidity
Slowness of movement
Balance issues
Soft voice volume
Facial masking (hypomimia)
Sleep disorders
Double vision
Organ involvement
On page 61, I describe it plainly: PD is degenerative. It can affect the bladder, kidneys, lungs, eye muscles, posture, and more.
It is not a one-symptom disease. It is a daily negotiation with your body.
“It’s a death sentence.”
After my diagnosis, I went straight to the bookstore. I needed to know how much time I had.
One of the first things I learned was this: Parkinson’s itself does not directly cause death. Complications can. Falls can. Aspiration pneumonia can. But PD is not, in and of itself, a ticking clock.
That realization changed everything for me.
I also quickly debunked another myth: dementia automatically comes with Parkinson’s. Not true. They are separate conditions.
Are there risks? Yes. Is it serious? Absolutely. But hopeless? No.
I am now seventy-two. I still travel. I still golf. I still laugh. I still fight.
“Medication fixes it.”
Medication helps. It does not cure.
I was advised to delay starting PD medication as long as possible to minimize long-term side effects.
Eventually, I had to begin because I could no longer hide the symptoms — my voice softened, and my facial muscles stiffened.
Meds wear off. They cycle. You fight through “down” periods. You adapt.
In Round 10, I describe it as fighting through the down cycle when movement feels restricted — turning on music, taking out the trash, doing anything to keep moving until the wave passes.
Medication is a tool. It is not the victory.
“If you look fine, you’re fine.”
Parkinson’s hides in plain sight.
In my early years, I worked tirelessly to conceal my symptoms from coworkers and teammates. I exhausted myself trying to appear “normal”.
What I eventually learned is this: if symptoms are present, people notice. The effort to hide Parkinson’s can be more draining than the disease itself.
The reality? Simple tasks become extremely tedious. Tying shoes. Buttoning shirts. Getting in and out of the car. Writing a check.
These are invisible battles.
You may see someone smiling at dinner. You may not see the mental focus required just to get spaghetti from plate to mouth.
“It only affects movement.”
Movement is the headline. Exhaustion is the footnote.
PD is mentally and physically exhausting. You never get away from it.
Sleep becomes unpredictable. REM sleep behavior disorder can cause you to physically act out dreams.
Balance shifts. Posture changes. Facial expression flattens. After strenuous activity, I describe myself curling into a “C position”.
It’s a full-body opponent.
“Life is basically over.”
This might be the most damaging misconception of all.
Parkinson’s changes your life forever. That’s true.
But change does not mean surrender.
I’ve learned that motion is the lotion. A body in motion stays in motion. Keep moving. Do not allow PD to be the force that stops you. Cooking. Golf. Physical therapy. Travel. Dancing (even without rhythm). Laughing until your stomach cramps.
In Round 8, I write that laughing releases endorphins and helps push PD back into the corner.
Humor is not denial. It is defiance.
“Everyone with Parkinson’s is the same.”
If you’ve met one person with PD, you’ve met one person with PD.
Symptoms differ. Progression differs. Coping differs.
In Round 9, I include a photo of my identical twin brother and me — same DNA, different outcome. The contrast is striking.
Parkinson’s is deeply personal. No two fights look alike.
So What Should We Get Right?
We should understand that:
Parkinson’s does not discriminate
It is degenerative, but not hopeless
It requires flexibility, adaptability, resilience, and relentless intensity
It demands a team — family, caregivers, specialists, support groups
And most of all, it requires the will to never give up
In the Afterword, I write something I believe with all my heart:
“Only you know what it feels like to have your PD. Only you can press forward when your body says no. Your will is stronger than PD. If you fight with all of your energy, all of your heart, and never ever give up, you will punch out PD”
Parkinson’s is not pleasant. It is not fair. And it is not easy.
But it is not the end.
And that may be the biggest misconception of all.