Michael J. Fox's Crusade for a Parkinson's Cure

How the actor's Parkinson's diagnosis changed his life -- for the better, he says.

From the WebMD Archives

Michael J. Fox has always been a poster boy. With his youthful good looks and intelligent charm, he rose to fame playing a sassy Republican teenage son of ex-hippie parents in the TV sitcom Family Ties. In the blockbuster Back to the Future film trilogy, he was a time traveler with perfect comedic timing. And in a later sitcom, Spin City, he made us wish all politicians were as personable as his Deputy Mayor Mike Flaherty.

In 1998, Fox became a poster boy for another reason: He went public with the news he had Parkinson's disease, diagnosed 7 years earlier when he was 30. Parkinson's is marked by:

  • Trembling in the hands, arms, legs, jaw, and face
  • Stiffness of the body
  • Slow movements
  • Impaired balance and coordination.

The disease had become unmanageable for the actor, who until then was able to minimize his symptoms thanks to medication, surgery, and good timing. Eventually, the effort became too much.

"I needed every bit of those 7 years to say, 'I want to be out there,'" Fox says. "But at a certain point I woke up and said, 'What's the risk? That people will judge you? People are already judging you about whether you wear red shoes or blue shoes. So I talk funny or shake -- why should I restrict myself?'"

"You have to take your time and do what you need to do," he says. "But when you arrive at a place where you are no longer judging it, where there's no good or bad or right or wrong and it just is what it is, you accept it."

Much to his amazement, so did everyone else. While Fox feared becoming a sob story for the tabloids, he was met with huge support. Overnight, the actor beloved for his ability to make people laugh came to represent the face of an incurable illness that gets worse over time.

Laying the Foundation

Parkinson's disease develops due to the death of brain cells that make dopamine, a chemical crucial to balance, speech, and even memory. There's no cure, and the treatment -- generally a prescription for synthetic dopamine -- is far from perfect.

Continued

Regardless, the diagnosis turned out to be nothing short of a gift, Fox says. "Only when my body couldn't keep still was I able to find stillness in myself," he explains. "I think the key to it is the 12-step acceptance rule: 'My happiness grows in direct proportion to my acceptance, and in inverse proportion to my expectations.'"

Fox, now 53, turned the illness and his struggle with it into a gift for millions of others when he launched The Michael J. Fox Foundation for Parkinson's Research in 2000. Its mission is to fund and support research in the hope of discovering a cause, new treatments, and, ultimately, a cure. His celebrity has also helped raise awareness of Parkinson's, including a memorable appearance before Congress in 1999 when he spoke without using medication so people could see the ravages of the disease.

With a goal to move intelligently and quickly, Fox's foundation offers grants -- $450 million to date -- to researchers with remarkable speed. Angus Nairn, PhD, lead researcher for Yale's Michael Stern Parkinson's Research Foundation, says: "The NIH has cut back on research, but Parkinson's has been really fortunate, because The Michael J. Fox Foundation has been incredibly successful in doing things other people can't do on their scale. They have a different way of working, with a very fast turnaround funding research."

The foundation's approach comes from the founder himself. "Michael is the founder, but he is a patient first, and as a patient, he has a patient's sense of urgency," says Deborah W. Brooks, the foundation's co-founder and executive vice chairman.

Career View

Fox has always moved at lightning-fast speed. Raised along with three sisters and a brother by his mother and his father (a sergeant in the Canadian army), Fox discovered acting in high school. At 16, he won the lead in a Canadian series called Leo and Me. Enough work followed to give him the courage to quit high school his senior year and move to Los Angeles to seek acting work.

For several years, it looked like a bad decision, as he subsisted on fast food and residual checks from occasional parts. Then, in 1982, he won the role of Alex P. Keaton in Family Ties. By 1988, when he married actor Tracy Pollan (who he met on the set of Family Ties and who he calls "my bride, the one and only love of my life"), Fox was working nonstop in movies and television. He was making the Back to the Future trilogy, Teen Wolf, and Casualties of War while taping Family Ties.

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Exhausted from his schedule and drinking heavily, Fox was on location in Florida filming Doc Hollywood in 1990 when his pinky began to twitch uncontrollably. A doctor linked it to an old injury Fox got while filming a stunt on Back to the Future. A year later, Pollan noticed that one side of her husband's body seemed rigid during a jog and insisted he see a neurologist. This time, there was no question: Fox was diagnosed with Parkinson's disease in September 1991.

The diagnosis made him among the approximately 10% of patients who have early onset Parkinson's -- the average age of those diagnosed is 60. As is the case with most people with Parkinson's, "by the time I had my first symptom, a twitching pinky, 80% of my dopamine-producing cells were already dead," Fox says. His doctors told him there was no cure. They could treat him with synthetic dopamine to replace the chemical deficiency caused by the disease, and he could expect to work for another decade. Fox pushed it as hard as he could, and a decade later, he took on the biggest role of his life: leading The Michael J. Fox Foundation.

"The first thing I wanted to do was put the pieces in place to move forward quickly and not keep good ideas on the shelf for too long," Fox explains of his mission. "As soon as ideas appeared, I wanted to give them the wings to fly."

While Fox has had a steep learning curve, he says he's had no problem being taken seriously by the research community. "They were like, 'Wow, grants? What line do we form in?' I think that the Parkinson's community is really excited to get the attention and have people interested in getting them to work."

Family Ties

The foundation is by no means the entirety of Fox's world. Most important to him, by his own account, is his family: He and Pollan have four children -- 19-year-old twins Aquinnah and Schuyler, who are in college; Esme, 13, a seventh-grader in New York City, where the couple live; and a son, Sam, 25, who lives nearby in Brooklyn.

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"My family is the exception to the rule that 'what other people think of me is none of my business,'" Fox says. "I want them to be encouraged and emboldened by what I do and to see me as a refuge and resource." And yes, life in a large family can be chaotic, but the actor says it is within that tumult that he has learned to find a calm mind, much as he's found peace with the tremors of his disease. "Having a family means you don't always find moments of quiet, so you find quiet in the chaos."

Fox also continues to act. "I can play anybody as long as they have Parkinson's," he says with a laugh. In 2013, he starred in NBC's The Michael J. Fox Show, a comedy about a man with Parkinson's. "But it was more than I bargained for work-wise," he admits. The show ran for 19 episodes. Now, he enjoys roles like his guest-starring part on CBS's The Good Wife, playing an attorney with, yes, Parkinson's. And he's written two best-selling memoirs, Lucky Man and Always Looking Up: The Adventures of an Incurable Optimist.

"I've accomplished a lot already career-wise, so everything else is just gravy," Fox says. "What I really want is for our foundation to be so successful it goes out of business."

Pursuit of Happiness

Fox shares some of his hard-won wisdom about what it takes to be your best.

Accept what you can't change. "I think the key to my optimism was accepting my situation [as a person with Parkinson's]. When I saw it as just one of the things I was dealing with, then I could see the room around it."

Practice patience. When Fox does have a down moment, "I just wait it out."

Embrace family ties. "My family makes me a better person because they take me out of myself."

Let go of judgment. "When there's no 'good' or 'bad,' 'right' or 'wrong,' it just is what it is."

Go for it. "Being small growing up, I had to make an extra effort in things I did, and it opened up so many possibilities for me. 'Nothing ventured, nothing gained' was obvious to me from an early age."

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Say yes. From actor to author and head of a foundation, Fox is open-minded: "Being yourself and taking risks -- what's the downside?"

Live well. Fox doesn't drink, watches what he eats, and exercises. "I can't run marathons anymore, but I hike and have a dog who walks me."

Find more articles, browse back issues, and read the current issue of "WebMD Magazine."

WebMD Magazine - Feature Reviewed by Brunilda Nazario, MD on August 18, 2014

Sources

SOURCES: 

Michael J. Fox, actor; founder, Michael J. Fox Foundation.

Angus Nairn, PhD, PhD, professor, Yale University; lead researcher, Michael Stern Parkinson's Research Foundation. 

National Institutes of Health web site. 

Deborah W. Brooks, co-founder and executive vice chairman, MJF Foundation.

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