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- December 07, 1998
- Vol. 50
- No. 21
After the Tears
Michael J. Fox Faces An Uncharted Future with Courage and Compassion as He Confronts a Cruel Foe: Parkinson's Disease
At the time, Fox—best known as Family Ties' Alex P. Keaton, the Reagan era's favorite young Republican (and as the whiz-bang hero who speeds Back to the Future three times in a DeLorean sports car)—was keeping a confidence he was not prepared to share. Now he is. Fox, it turns out, has been battling Parkinson's disease for seven years. A progressive degeneration of the central nervous system that is characterized by tremors and muscle stiffening including facial rigidity, the disorder ultimately renders some patients unable to walk, talk or care for themselves. Worse, it has no known cause or cure. Until now, Fox had let only a tight circle of family and friends in on the illness.
"It's not that I had a deep, dark secret," says Fox of his private struggle with the disease, which required him to have brain surgery last March. "It was just my thing to deal with. But this box I had put everything into kind of expanded to a point where it's difficult to lug around. What's inside the box isn't inhibiting me. It's the box itself. I think I can help people by talking. I want to help myself and my family."
It's a grim disease that afflicts an estimated 1 million Americans—including Muhammad Ali, the Rev. Billy Graham and U.S. Attorney General Janet Reno—most over the age of 60. No doubt those close to Fox wonder the same thing: How could such a boyish-looking man be afflicted with a disease associated with older people? Of the 1 million Parkinson's cases, only 10 percent occur in those under the age of 40. "I have seen a slight increase in younger people, but I think it's due to the accuracy of diagnosis and patients going to neurologists earlier," says Fox's own neurologist Dr. Allan Ropper, 48, of St. Elizabeth's Medical Center in Boston. "I don't think anything made Michael especially susceptible to Parkinson's. Among my patients, his case is not extraordinary. I've got a number of patients just like him, with no past family history or any other factors. It's a very idiosyncratic disease." Says Fox, with a wry grin: "I love the irony. I'm perceived as being really young, and yet I have the clinical condition of an old man."
According to Ropper, Fox is in the "late mild" stage of Parkinson's. (The neurologist divides the disease into mild, medium and severe stages.) The brain surgery almost completely eliminated Fox's most serious symptom—a shaking of his left arm so violent, Fox says, "I could mix a margarita in five seconds." The drug Sinemet is a blessing, but as the disease progresses the drug is less effective. For the moment, a pill taken about 11 a.m. (or whenever stiffness or public appearance demands) helps control the milder symptoms—constant rigidity in his hips, tremors in one or both hands and a feeling in his feet as he lies in bed at night that Fox likens to someone "tapping my toe with a pencil." Ropper is hopeful that Fox will be functional for at least another 10 years and maybe well into old age. But he cannot rule out the worst, which is that Fox may well have to give up work—and it is uncertain whether he will need further brain surgery. "This is a very serious neurological disease," Ropper says. "In extreme cases patients live a bed-bound existence where they require total care."
The darker scenario is one that Fox, a native of British Columbia, refuses to entertain. "To sit in a chair and feel pain in every muscle and say, 'Oh no, I'm going to get worse'—why do that?" he says. Instead, he focuses on the good in his life: how much he loves to read science books to his son Sam, 9; the delight he takes watching his 3-year-old twin daughters Aquinnah and Schuyler play dress-up. "There's no doubt I'm charmed," he says. "I'm not crying 'What a tragedy,' because it's not. It's a reality, a fact. Once in a while I see someone with advanced Parkinson's on television, and it gives me pause. I have compassion for them, but I'm not connected to [them]. I'm not there now."
He remains optimistic that a cause and cure will be discovered in the next several years. "He's truly remarkable," says Pollan, 38, his wife of 10 years. (Her TV pilot, Anna Says, produced by her husband, airs next spring.) "I tend to worry about the future, and he's always saying to me, 'Why are you living through something that might happen?' He lives today. He lives the moment. And the moment is good."
But Fox has had his share of bad moments as well. He frequently had to tell a Spin City producer he was unable to pull off certain physical jokes. Then there was the time, recently, when he was sitting backstage waiting to do Letterman, praying that the trembling in his arms would stop before he was introduced: "I'm going, 'Okay, any time now would be great [for the medication to work]. When I went out everything was fine. But as I sat there having a conversation, I was thinking, 'You don't know the game I just played.' "
At home, he'll forgo his medication and live with the effects. Sometimes his arms and wrists are so stiff he cannot even pick up the TV remote control. And, he says, "I move around the house really slow, dragging my leg, slightly hunched." But in public, he concedes, he is a master of concealment. "There are a billion tricks I can do to hide [the symptoms]," says Fox. "I can touch something and stop the tremors for about 15 seconds. Or I can move around. I've done interviews where I've walked the entire time, and later the writer describes me as nervous." Or he'll simply take some Sinemet—as he contemplated doing before an interview with PEOPLE. He opted to take it, but not to hide symptoms. Rather, he explains, medication helps "my jaw, my mouth and my tongue work better."
After so many years of keeping his condition private, Fox now feels at ease, and relieved, at going public with it. Several weeks ago, while surfing the Internet in his four-bedroom Upper East Side Manhattan apartment, Fox found himself clicking on a Parkinson's Web site—for the first time. "It was like looking in a window," he says, "and seeing a light on and people inside." People whose hardships even now he sounds more ready to acknowledge than his own. "When I say that I don't consider this a big tragedy, I'm not saying it isn't," says Fox. "For somebody else, it may well be, and I don't mean for a second to diminish it."
How he got from Alex P. Keaton to today is a trip Fox still finds hard to fathom. It was in 1991, while on location filming the romantic comedy Doc Hollywood in Gainesville, Fla., that he first noticed a "twitch" in his left pinkie. "I looked at it and thought, 'Geez, what's that?' " he says. At a local hospital, Fox recalls, a neurologist "said I probably did something to my funny bone." Within six months the tremor had spread to much of his left hand, and his shoulder had become achy and stiff. Once back in New York City, he was tested again by a neurologist there. The diagnosis was succinct: Parkinson's disease. "Get the f—- out of here," Fox told the doctor. "Seriously?"
Incredulity turned quickly to fear and confusion. "It was incomprehensible," says Fox. "The doctor said I would be able to function for years and years. But even talking in those terms was strange." In the hallway outside their apartment bedroom, Fox gave Pollan the news. She broke down in tears. "She was scared," says Fox. "I was too." Pollan recalls the moment: "Neither of us quite understood. We hugged each other and assured ourselves that we'd be able to deal with it."
Which meant getting a second opinion—and a third, even a fourth. According to Fox, each doctor greeted him with the same initial reaction, that he must have been misdiagnosed, that he was too young and too fit. "But I would not go in thinking, 'Oh, good, this one thinks maybe it's wrong,' " says Fox. "I'd say, 'You'll see. This is it.' From the beginning, I wasn't frantic," he adds. "I was pretty methodical." His matter-of-fact optimism calmed those closest to him—including his four siblings and his mother, Phyllis, who now lives in Vancouver (Fox's father, Bill, died of a heart attack in 1990). "I had a bad moment [after he told me]," his mother says. "But he picked me up. His attitude was contagious."
Intent on understanding his condition, Fox grilled various neurologists for information—and an explanation. Could he have contracted it from a head injury he got playing hockey as a kid in Canada? How about the time he blacked out doing a stunt in a film? No, he was invariably told. Not likely. His doctors asked if he had ever used drugs, suspecting (erroneously, Ropper believes) that drugs might increase susceptibility to Parkinson's. "I struck that," says Fox. He also ruled out exposure to various toxic—and potentially Parkinson's-related—metals such as manganese. "And then there's just that thing—fate," he says. "You're the guy it touches."
Fox did his best to get on with his life, but during the next few years found himself confused and frustrated. As the disease progressed, his entire left side was touched by stiffness and tremors. "And I mean big tremors," says Fox, pounding his left arm on a table in demonstration. Son Sam, then a toddler, named it "the shaky hand," says Fox. "We had a whole routine where he'd count to three and pump my hand, which kept it still for three or four seconds." But the game couldn't mask Fox's distress. Frustrated with neurologists who seemed unable to help, he stopped seeing them in 1993. Instead he asked his internist to prescribe medication—and Michael, foolishly, he admits, decided on dosages himself. "I'd medicate the tremor but overmedicate everything else," says Fox. "It made my whole body uncomfortable."
In 1994, Fox was referred by his internist to Dr. Allan Ropper, who had an immediate impact. In addition to fine-tuning Fox's medication, Ropper gave the actor hope on two counts. First, he explained that doctors were on the brink of perfecting an operation, called a thalamotomy, that could relieve his radical tremors for good. "Michael's other big concern," says Ropper, "was whether he'd be a father who could play with his kids." Reassured that even in the swiftest progression Fox had a decade of relative normalcy, Pollan became pregnant with their twins the next year. Professionally, Fox followed a role in 1995's romantic comedy The American President with the disappointing The Frighteners. "Moving to the rhythms of the business clearly made no sense to me," he says. "I needed to live my life for my family and myself."
Returning to the steadier schedule of a TV series made the most sense to him. But before signing up for Spin City in 1996, Fox made sure the two men in charge—Jeffrey Katzenberg of DreamWorks, Spin City's production company, and ABC president Robert Iger—understood his situation. "I said it could get very bad or not get bad," says Fox. "They said, 'Let's go.' " Last March, two days after taping the season finale—and after first telling his castmates about his disease—Fox headed for the Holy Family Hospital in Methuen, Mass., to undergo a thalamotomy. His neurosurgeon, Bruce Cook, explained the seriousness of the procedure: "I told him that while the success rate was close to 90 percent, there was some horrible risk—like paralysis, coma, death."
Fox was undaunted. He told Cook about the risk he had taken when he dropped out of high school in Vancouver at age 18 and arrived in Hollywood without money or job prospects. "The difference between what I did and what you're doing," Fox told the surgeon, "is that you know what you're doing." Before leaving for Boston, Fox had his most serious talk with Sam. "I had to tell him there was a tiny chance it might not go well," he says. "I talked about neurons and transmitters not working until he had had enough. Then I said, 'You know I'll be okay.' And he said, 'Yeah, I know.' " The night before the surgery, Fox relaxed by listening over and over to "Given to Fly" on Pearl Jam's Yield album. Says Pollan: "I had fears, but he had no question it would be successful. He just said, 'Don't worry. This is going to be great.' "
Lying sedated but awake with his head bolted to a frame throughout the four-hour operation, Fox answered questions as doctors worked to locate—and cauterize—misfiring cells. Says Fox: "They did something once that slurred my speech, and I thought, 'Oh, man, you're messing with my brain. It's freaking me out.' " Later, Cook asked him to make his arm shake. He couldn't. "I got angry at myself," says Fox. "I said, 'Come on, Mike, you geek, you're screwing the guy up.' Finally I said, 'I'm sorry, I can't do it.' And he said, 'Good. We're done.' "
Today, thanks to the surgery, Fox is free of his worst tremors. And talking about his illness with the Spin City cast has eased life in ways almost as satisfying. Exhausted by 14-hour days on the Manhattan set, he now plans to be teleconferenced into story meetings. And he foresees fewer physical stunts—like the inline skating number he did for this season's premiere. "Each time [we asked him to do a stunt] I had a crisis of conscience," says executive producer Bill Lawrence. "Michael always did everything, and he was great, but afterwards he was really sore." Now, says Fox, "I want to give myself permission to take it a little easier, to dial it down to nine." Just getting through rehearsals is " tough, he says: "I can't do things a million times. I can only do them once or twice." And sometimes not at all. A few weeks ago, when he was supposed to be taping before a studio audience, he found himself stuck backstage, waiting for his Sinemet to work. "I don't like to say, 'Mike needs 15 minutes,' " he says. "I have a few boot marks on the wall as proof."
But his illness has yet to impede his success. At the very Golden Globe Awards ceremony that instilled terror in him, Fox picked up a statue for Best Actor in a comedy series. And he remains hopeful about his future in general. "The end is not pretty—I'd like to stop it from its logical conclusion—but I'm grateful. It's made me stronger. A million times wiser. And more compassionate. I've realized I'm vulnerable, that no matter how many awards I'm given or how big my bank account is, I can be messed with like that. The end of the story is you die. We all die. So, accepting that, the issue becomes one of quality of life." Now that he can no longer play the hockey he has loved since childhood, he takes long walks in Central Park. And only in his sleep is he entirely free from tremors and stiffening. "The biggest thing," says Fox, "is that I can be in this situation and still love life as much as I do. Life is great. Sometimes, though, you just have to put up with a little more crap."
Karen S. Schneider
Todd Gold in Los Angeles
- Todd Gold.
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