Let Them Help

I wasn't expecting to cry at a medical conference.

The annual ATMRD conference is full of remarkable moments: Researchers unveil discoveries, clinicians share new approaches to care, and people living with Parkinson's tell stories of resilience and struggle. But sometimes the most important lesson comes from a simple question.

This year, that question came from my friend, Dr. Dan Irizarry.

Ryan Reynolds was on stage sharing the story of his father, who lived with Parkinson's disease. Ryan was everything you'd hope he'd be: funny, generous, and deeply human. He was there as a son and care giver. In full disclosure, he was also there as a paid spokesperson for Acadia’s “More to Parkinson’s” campaign. 

Ryan Reynolds at ATMRD Conference, June 5 (still frame from Rebecca Korduner's LinkedIn post)

As he talked about his dad, he described something many families affected by Parkinson's understand all too well: His father's reluctance to talk about what he was experiencing created distance. He said his dad mentioned Parkinson’s three times - total. You can say things went unsaid, questions went unasked, and pain stayed hidden.

Then the audience was invited to participate. Dan stood up.

"I have seven children," Dan said.

Ryan paused for a second, laughed, and acknowledged what an incredible statement that, in and of itself, was.

Then Dan did something extraordinary: He recognized Ryan's pain. He acknowledged the hurt that came from not being allowed into his father's Parkinson's journey. And then he asked: "As a father with Parkinson's,” Dan asked, “what can I tell my children so they won't go through what you did with your dad? Because if this ever happens to me, I want to be able to make this easier for my children."

The room got quiet. Ryan got emotional. He told Dan that he thought his children were going to be fine because of the kind of father Dan clearly is.

Then he offered three words I'll carry with me for a long time: "Let them help."

I've been thinking about those three words ever since.

Parkinson's is often described as a movement disorder, but anyone living with it knows it affects far more than movement. Anxiety. Depression. Hallucinations. Sleep disturbances. Cognitive changes. Apathy. Emotional unpredictability. Grief. Fear.

Many of these symptoms are invisible, carry stigma, and are difficult to talk about, so people hide them. We tell ourselves we don't want to burden our spouse. We don't want to scare our children. We don't want our doctor to think we're getting worse. We don't want our friends to worry. We stay quiet. 

But here's the problem: People can't help with what they don't understand.

When we hide our experiences, we unintentionally leave the people who love us standing outside the door, knowing something is wrong but not knowing how to come in. The cost of that silence is enormous. It costs time, understanding, relationships, and the ability to connect while we still can.

My dad has lived with Parkinson's for more than twenty-five years. Along the way, our family has encountered symptoms we never knew were Parkinson's. Hallucinations. Delusions. Emotional changes. Moments that were confusing and frightening because we didn't have the language to describe them.

I've lost count of how many times someone has read one of my stories or watched a Boys of Summer film and said, "I didn't know that was Parkinson's."

Neither did we. That's why Ryan's answer matters: "Let them help."

Let your healthcare providers, care partner, family, and friends help.

Tell them when you're anxious, depressed, and when you're seeing things that don’t quite seem real.

Tell them when you're scared, tired, and angry.

Tell them when you're grieving the person you used to be. And if you can’t tell “them” right away, find a group you can tell. Connect. Unload. Replenish.

There's a phrase I've been using more and more lately: Connection is medicine. It doesn't replace medication, exercise, or good clinical care. But it makes all of those things work better together because none of us are meant to navigate a disease like Parkinson's alone.

At a conference full of experts, researchers, and clinicians, one father asked a son how to spare his own children from unnecessary pain.

The son offered three words that might just save years of misunderstanding: Let them help.

...and don't make Green Lantern. Or if you do, make sure you make Deadpool afterward.