I Didn’t Know That Was Parkinson’s

My dad has lived with Parkinson’s disease for more than 25 years.

Like many people, when he was first diagnosed, we mostly thought about tremors, stiffness, and slowness. The things we could see. But Parkinson’s is so much more than the visible things.

 A few years ago, my dad began having hallucinations.

Dan & Robert Cochrane at the last A's game at the Oakland Coliseum. More about the Boys of Summer documentary series at www.bosmovie.com.

Sometimes they were almost harmless: A cat sitting quietly in the window. Sometimes they were unsettling: Bugs crawling across the floor that weren’t really there. Sometimes they were frightening: A shadowy figure lurking in the corner of the room.

I know what you’re probably thinking: “I didn’t know that was Parkinson’s.”

You’re not alone.

According to More to Parkinson’s, hallucinations, delusions, anxiety, depression, sleep disruption, apathy, cognitive changes, and emotional unpredictability are all symptoms many people with Parkinson’s may experience. Yet these symptoms are often misunderstood, hidden, or never discussed at all.

Why? Because they’re scary, people fear judgment, and because admitting your mind may be playing tricks on you is a whole new level of vulnerability. I’ll never forget talking to my dad after he received his early onset dementia diagnosis (which frequently occurs with people in later stage Parkinson’s). I asked him if he understood what it meant. He said: 

“I guess it means I’m losing my mind.”

Gut punch. And because of that, many families quietly convince themselves: “Maybe we shouldn’t talk about it.”

Silence has a cost. People can’t support struggles they don’t understand. Doctors can’t treat symptoms patients are afraid to mention. Communities of friends, families, neighbors and co-workers can’t advocate for realities they never hear about or don’t understand.

Most of the world doesn’t know all of this is Parkinson’s, too.

This is why the work we do at Yes, And…X is intentionally different.

We create spaces that are creative, compassionate, and brave enough to hold difficult truths. Through storytelling, improvisation, Cinema Therapy, and shared experience, people begin speaking out loud about the things they thought they had to hide. We’re a sneaky support group because we play games, study awesome films, listen to and move to amazing music and then ask, repeatedly…what did you feel? What did you notice?

Fear, confusion, embarrassment, grief, and all the weird shit that makes you wonder if you’re losing yourself, that’s all welcome with us. We reframe it together. 

Something powerful happens when hidden stories are spoken: “Wait…me too.”

Because isolation is a killer, and Parkinson’s disease is about much more than movement. It affects identity, confidence, relationships, memory, communication, and connection. It affects quality of life in ways the public rarely sees.

The more we speak up, the more people begin to understand that Parkinson’s is not just “the shaking disease.” It is human, complicated, emotional, and unpredictable.

To get better support, empathy, research, treatments, and even “the cure”, we need more people willing to tell the truth about what this disease actually feels like.

Because we cannot get help from people who don’t know what we need or the reality of what we’re dealing with. The first step toward accelerating the cure is amplifying the voices brave enough to say:

“I didn’t know that was Parkinson’s either.”

Robert Cochrane, PhD is CEO/Founder of Yes, And...X, a 501(c)3 dedicated to amplifying voices in the PD community to accelerate the cure.