4 Parkinson’s Symptoms So Strange You May Never Have Connected Them | WHO KNEW?

Have you ever experienced something with Parkinson’s that seemed so strange you didn’t even tell anyone?

Not because it wasn’t real.

Because you weren’t quite sure how to explain it.

Maybe something important suddenly doesn’t feel important anymore.

Maybe you finish a task but your brain never gives you that satisfying feeling of being finished.

Maybe you’ve started relying on your eyes more when you walk.

Or maybe you close your eyes and, bizarrely, they don’t want to open again.

Welcome to Part Two of WHO KNEW? Week, with four more Parkinson’s experiences hiding in plain sight.

In this episode of Living with Parkinson’s: The Good, the Bad, and the Reality, we explore some of the less obvious ways Parkinson’s may affect how the brain processes movement, motivation, reward, sensory information, and even something as basic as opening your eyes.

We talk about:

• Why Parkinson’s may affect how strongly your brain identifies something as important or rewarding
• That strange feeling of completing something but never quite getting the internal “done” signal
• Why changes in proprioception, your internal sense of where your body is in space, can make you rely more heavily on vision
• Why you may find yourself looking at your feet more when walking
• Why darkness and situations with fewer visual cues can sometimes feel more difficult
• A rare but very real phenomenon involving difficulty initiating eyelid opening

That final one is a serious WHO KNEW?

You close your eyes.

Then tell them to open.

And somehow the message seems to get stuck between your brain and your eyelids.

Some people compensate by raising their eyebrows, tilting their head back, or even using their fingers to help open their eyelids.

You’ll also hear Carmen’s Care Partner Corner, where Carmen talks about why behavior that looks like distraction, hesitation, disinterest, or frustration from the outside may feel completely different to the person experiencing it.

Her advice is simple:

Pause before assigning meaning to the behavior.

Ask first.

Give the person a moment.

Because sometimes Parkinson’s doesn’t change what someone thinks or feels.

It changes how that thought, feeling, or movement makes its way to the outside world.

And that is exactly why we keep doing WHO KNEW?

Sometimes simply discovering that something has a name can turn:

“What the heck is happening to me?”

into:

“Wait... other people experience this too?”

And that can make the strange stuff feel a whole lot less lonely.

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You’ll find guides, community resources, and practical strategies to help you keep doing life today.

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“With Parkinson’s, medication is like coffee. It’s not about how strong it is. It’s about when you take it.”

⚠️ Important Note

This is my personal Parkinson’s journey. What works for me may not work for everyone. Parkinson’s is different for each person, and medication plans should always be discussed with your doctor or healthcare provider.

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