'You're going to have a great life:' Michael J. Fox on what he wishes he had known when diagnosed

·4 min read

It’s been 30 years since Michael J. Fox was diagnosed with Parkinson’s disease.

At age 29.

That’s more than half his life with a progressive neurological disorder for which there is no cure.

In that time – those years post diagnosis – he has created a beautiful family, added to his acting credits, and built an eponymous organization with a goal of finding a cure for the disease that has shaped his life.

It's a long way from Alex P. Keaton and Marty McFly and so many other characters Fox portrayed over the course of his acting career.

As I wait for him to join a Zoom call to talk about the latest ambitious initiative for the Michael J. Fox Foundation, I wonder just how different the real-life Fox will be from the roles he played, so many of which were funny and heartwarming and helped to define our relationship with him.

Then, before my mind can wander much more, another square pops onto the screen.

Fox has joined the call.

An 'incredibly lonely' disease

In 2000, Fox created the Michael J. Fox Foundation to research and find a cure for Parkinson's. The organization has since become the leading authority on the disease, and it is aggressively continuing its research into being able to predict who is at risk.

Michael J. Fox: We can help end Parkinson's by learning early markers and symptoms

Fox himself has become an expert too, talking easily about the importance of research (the foundation is expanding a clinical study aimed at identifying early symptoms), genetic markers, the role of science and the need to focus on patients.

His key area of expertise, though, is more personal, like when he discusses the devastatingly real aspects of 30 years with the degenerative disease.

"Parkinson's patients can be incredibly lonely," he says. "Lonely in crowded room. Lonely in Madison Square Garden. It's because you're isolated in your experience and you can't relate it to anybody, and you have a million frustrations. Like someone says, 'Slow down,' and I say, 'If I could slow down, I'd friggin' slow down. I can't slow down again. I am like I am.'"

Tremors are a common symptom of Parkinson's disease, and Fox has not dodged them. He also mentions at the beginning of our meeting that he's just taken medication, so he's not sure how his speech will be.

He needn't have brought it up, though. His speaking is clear, with few instances of slurring – another common Parkinson's symptom.

Fox, a self-described optimist, is frank, forthright and effortlessly funny.

Right after he joined the Zoom, as we were getting settled, small talk turned to COVID and omicron and how this extended period of virtual meetings has affected his life.

"I don't know that everyone has legs for sure," he deadpanned.

'I knew a truck was coming'

When asked about what he wishes he could have told himself 30 years ago, Fox talks about his wife, actress Tracy Pollan, and their four children, now adults, and living in the moment.

"It’s being relevant," he says. "I mean not relevant in a public sense. I don't mean in a public relations sense. I mean relevant in my life, relevant to my children. Relevant to my dog, who's passed away since. Just alive and invested. I didn't, I couldn't see that because I didn't know what Parkinson's was going to be."

Think about that.

Alive and invested.

"When I was diagnosed, I had a little twitch in my pinky," Fox says. "And then they said 'You're going to have this disease.' And I knew a truck was coming. But I didn't know when it was coming or how hard it was going to hit. My wife didn't know. And so ... it was really tough, the first couple years.

"And so during those tough years, I would have liked to say to myself, 'It's going to be great. You're going to have a great life. It's going to be a drag, you're going to have a lot of things you have to deal with. But on personal level, you're going to have a family, you're gonna have stability and you're gonna have projects. On a work level, you're going to have things you want to do and things you accomplish and achieve beyond what you thought you could.'"

For a conversation that started with a laugh about virtual calls during COVID, this is suddenly very real. Very relevant to the pandemic, to the uncertainty we're all facing.

Fox has left the call now.

And I realize that my thoughts from 30 minutes ago, while waiting for him, feel silly and far away.

Michael J. Fox is no longer an actor, he's no longer entertaining us.

He's moved into a new realm.

He is now teaching and inspiring.

This is a bigger gift than all his characters combined.

Kristen DelGuzzi is Opinion Editor at USA TODAY. Follow her on Twitter: @kristendel

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This article originally appeared on USA TODAY: Michael J. Fox on living with Parkinson's, advice to younger self

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