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Michael J. Fox Reveals What's So Difficult About Having 'False Hope' With Chronic Illness

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Having optimism and a positive attitude about your condition is one way to cope with challenges, as many people with chronic illness know — but there also may come a time when you are confronted with the reality of how much your body has been affected. In a new interview with the New York Times, Michael J. Fox opened up about his recent health scare and how it made him reconsider his attitude towards his Parkinson’s disease.

What is Parkinson’s Disease?

Parkinson’s disease is a neurodegenerative disorder that affects dopamine-producing neurons in part of the brain called substantia nigra, which helps controls movement and coordination. Symptoms include tremors, limb rigidity and gait and balance problems. About 10 million people worldwide have Parkinson’s disease, which can develop in people both younger than 50 (young-onset Parkinson’s disease) and older.

Fox, who was diagnosed with Parkinson’s disease in 1991 (he announced it publicly in 1998) revealed that he had been having a recurring problem with his spinal cord. After he started falling a lot, he had surgery and “an intense amount” of physical therapy. He agreed to do some acting, and on a morning he was supposed to go to work, he fell in the kitchen and fractured his arm. He ended up getting 19 pins and a plate in his arm.

“It was such a blow,” he said.

Fox said though he doesn’t like to talk about things happening “for a reason,” he did consider what he could learn from it. He wondered what was it that made him “skip down the hallway” thinking he was fine, even though he’d been in a wheelchair six months earlier.

“It’s because I had certain optimistic expectations of myself, and I’d had results to bear out those expectations, but I’d had failures too,” he said. “And I hadn’t given the failures equal weight.”

Fox revealed his health issues brought him to a place where he started to question if he had been selling “false hope” about his disease. “‘Is there a line beyond which there is no consolation?’” he wondered. “For me to get to that place is pretty dark.”

Fox added:

I realized that the understanding I’d reached with Parkinson’s was sincere but risked being glib. I’d made peace with the disease but presumed others had that same relationship when they didn’t. Then when I started to deal with the effects from the spinal surgery, I realized: Wow, it can get a lot worse. Being in a position where I couldn’t walk and had health aides 24 hours a day, was I still prepared to say, ‘Hey, chin up!’ Parkinson’s, it’s a strange test.

Fox also discussed how Parkinson’s disease has affected his work as an actor. He said the reason why, soon after his diagnosis, he starred in a series of films that all ultimately flopped because he was scared and thinking his Parkinson’s was “going to be bad” and he made decisions based on ideas in his head about time restrictions and financial pressures.

He said what he should have done was do as many good films as he could, and to find something that meant something to him.

“It wasn’t until ’94 that I started getting it. That’s when I started to accept the disease — and acceptance doesn’t mean resignation. It means understanding and dealing straightforwardly,” he said.

“In a way, Parkinson’s got my head in the game. I realized there are bigger things than being a rock star.”

Reflecting on “The Michael J. Fox Show,” which included Fox’s Parkinson’s in the show and only ran for one season, Fox said the show failed partly because he didn’t have the energy to keep the show on track, and because of “trepidation” on the part of the network.

“This is probably unfair but I feel like one day they woke up and said, ‘Oh, he really has Parkinson’s.’ Like somebody saw me tremoring in rehearsal and said, ‘What’s wrong with him?’ ‘Uh, he has Parkinson’s, remember? It’s the premise of the show,’” he said.

The point of the show, as he explained, wasn’t that Parkinson’s is funny, per se, but about how we and others react to things happening in our lives.

“Like, my family is extraordinary because they give me [expletive] all the time. Because to not do that… it’s a comment on my humanness,” Fox said. “You fall down, and it’s not funny anymore; but until it’s not funny anymore, it is funny. And something like that is what I was trying to get across with the show.”

Though there is no cure for Parkinson’s, there are treatments and strategies that can help improve quality of life — like these seven things healthy ‘Parkies’ do.


If you’re living with Parkinson’s disease, you aren’t alone! Click here to join our kind and understanding Parkinson’s community, ask questions and get support.

Image via Creative Commons/Paul Hudson

Originally published: March 1, 2019
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