19/09/2026
HOW PARKINSON’S FEELS
How does Parkinson’s feel?
That’s a surprisingly difficult question to answer.
People often associate Parkinson’s with tremors. And yes, tremors can certainly be part of it. But if you live with Parkinson’s, you quickly discover that a shaking hand may be only one small piece of a very complicated puzzle.
And no two people experience Parkinson’s exactly the same way.
Some tremor. Some don’t. Some struggle primarily with movement, while others are hit hardest by fatigue, pain, sleep problems, cognitive changes or autonomic symptoms.
Parkinson’s can feel like your muscles never completely relax.
It can feel like knowing exactly what you want your body to do, but waiting for it to respond.
It can feel like your feet are suddenly glued to the floor.
It can feel like waking up exhausted after what should have been a full night of sleep.
It can feel like somebody unexpectedly pulled the plug on your battery halfway through the day.
And sometimes the hardest symptoms are the ones other people can’t see.
Brain fog. Anxiety. Apathy. Constipation. Pain. Temperature changes. Sleep problems. Urinary urgency. Changes in blood pressure. Difficulty swallowing. Sensory changes. Trouble finding words.
Then there are the fluctuations.
I may be moving pretty well this morning and struggling this afternoon. I may participate in an activity today and need considerably more recovery tomorrow.
That inconsistency can be confusing to other people.
“But you were doing so well yesterday.”
Exactly.
Yesterday was yesterday.
Parkinson’s doesn’t necessarily give us the same body, energy level or collection of symptoms every morning.
There are times when I know perfectly well what I want to do, but my body simply doesn’t cooperate.
I want to take that step.
I want to speak louder.
I want my muscles to loosen.
I want to have more energy.
I want to join everyone else and keep going.
Sometimes I can.
Sometimes I can’t.
That doesn’t mean I’ve stopped trying.
I’ve learned that living with Parkinson’s involves a tremendous amount of adapting.
I plan differently. I allow more time. I build recovery into my day. I pay closer attention to what my body is telling me.
But there’s something else I want people to understand.
I am still me.
I still have interests. I still have plans. I still want to laugh, contribute, exercise, spend time with people I care about and experience new things.
Parkinson’s changed some of the rules.
It didn’t take away the person playing the game.
So if you’re trying to understand someone living with Parkinson’s, remember this:
You may not be able to see what we’re dealing with.
But that doesn’t make it any less real.
Sometimes a little patience, flexibility and understanding can make an enormous difference.
For those living with Parkinson’s: How would YOU describe what Parkinson’s feels like?
