My life with Parkinson's

In 1991, at the height of a ridiculously successful career that included the Back to the Future trilogy and eight seasons of the sitcom Family Ties, Michael J Fox learned that he had Parkinson's disease.

Most Parkinson's sufferers are struck in their fifties or sixties; the boyish, energetic Fox was just 30.

For several years, Fox told few people about his illness. He threw himself as energetically as possible into his acting, starring in such films as The American President and later in the award-winning TV sitcom Spin City.

But eventually his symptoms grew too disruptive to hide and in September 1998, Fox told the world he had Parkinson's. Eighteen months later, he quit Spin City and founded the Michael J Fox Foundation for Parkinson's Research with a simple yet tantalisingly ambitious goal: to cure Parkinson's within a decade.

In less than two years, the Fox Foundation has become a remarkably effective organisation; not only raising millions - Fox is donating the profits from his autobiography, Lucky Man, including the $4 million advance - to his foundation) but also energising the research agenda for Parkinson's and, through ground-breaking stem-cell research, possibly for many other diseases, too.

Michael J Fox has a unique appeal - he's not just famous, he's incredibly likeable and sincere. Fox uses his fame wisely: he has attracted the top echelon of scientists, moneymen and politicians to his cause, and, through a combination of charm and savvy, holds them in the palm of his hand.

Once a regular ice hockey player, Fox still attempts to skate, ski and cycle. But he finds it increasingly difficult to perform the simplest tasks for 90 minutes after he wakes, when his body shakes as he waits for the drugs to take effect. The twins often find their father is unable to brush their hair or fasten their dresses.

"I tell them, 'My hands don't really work that well right now.' They'll come up to me with the hair clips or the brush and I just go, 'Hey, I don't do hair in the morning.'"

He may need to ask his wife to clean his teeth and buttonup his pyjamas at night.

On the set of Spin City, Fox timed his doses of medicine to make him fit for the roll of the cameras.

Despite his illness - or, as Fox himself argues, because of it - he is more focused and driven than ever before.

"One time I said it was a gift," says Fox, looking somewhat tired and a little less boyish than we might remember him, as he talks about his book, to be published in April, at a Beverly Hills hotel. His condition is too severe for him to travel to the UK.

"And people in the community, in the Parkinson's community, some of them kind of took exception to that and said, you know, 'How can you?' And I said, 'OK, well, I stand corrected.' But it is a gift - it really gave me a whole different appreciation for life. I found out I wasn't me minus this loss, minus Parkinson's, it was me plus it. I was enriched by what it opened for me. And how it made me look at things and what it wouldn't let me take for granted any more. And the people it exposed me to, new experiences it exposed me to, and the reactions I saw from the people that I love and what it opened up in them. I mean, you don't get to see that if you're just skating through life.

"I say it a few different ways in my book, but one was, 'I couldn't be still until I couldn't be still.' So I consider myself a lucky man, and given that I have Parkinson's disease, that statement requires some more explanation - maybe a whole book's worth."

Fox recounts his life - from his childhood in Burnaby, a suburb of Vancouver in western Canada, to his current celebrity status - in Lucky Man. He writes most passionately, however, of the past 10 years, including details of how the illness affected his relationship with his wife of 12 years, actress Tracy Pollan, 41.

Fox says he could not imagine going through life without Pollan by his side; her upbeat attitude is contagious. "A great deal of my optimism comes from Tracy," he admits, "because she means so much to me and she helps me and fills in the blanks in so many ways." Ask Pollan, however, and she'll say he's the one who keeps her going.

She told a US magazine recently: "He's just the ultimate optimist, and he always has been. It's hard to worry when you live with Michael because he's just not a worrier ... He's really taught me to live in the present."

But it isn't always so easy, and Fox admits that when he was first diagnosed, he created dialogues in his head that had Pollan leaving him. "There were a lot of questions I was afraid to ask Tracy, like, 'Does it scare you that I'm sick? Do you not love me because I'm sick? Do you not want to be with me because I'm sick?' You know," he says, "all that stuff. But I didn't ask those questions. But, oh boy, I came up with some answers that freaked me out.

"Once I faced up to that, and once I got a doctor and started really thinking about my situation and really talking about it, it was like, boom! - a second honeymoon. And then we had the twins." Their son, Sam, now 12, was Fox and Pollan's first-born. Twin daughters Aquinnah and Schuyler came in 1995. The most recent addition to the Fox-Pollan clan is Esmé, who was born last November. Experts say there's virtually no risk of Fox passing the disease on to his children, but he says the disease has already affected them in a myriad ways.

"It helps me raise my children in a way that I couldn't before. It teaches them things like empathy. I was talking to my son the other day. It was late and I hadn't taken any medication, so my hand started to tremble. As he was listening to what I had to say, he was looking me right in the eye. He just reached out and put his right hand on my hand. And we just kept talking. I could never teach him that."

Parkinson's, a progressive disorder of the nervous system, affects around 120,000 people in the UK and 10,000 new cases are diagnosed every year. It's generally perceived as an "old person's disease" and yet one in 10 victims is under 40.

The disease develops when cells that produce dopamine - a chemical that acts as a "signal agent" between the parts of the brain involved in movement and co-ordination - begin to die off. Once production of dopamine is disrupted, nerve cells destruct, leaving patients unable to control their movements in a normal way. The main symptoms include shaking, muscle stiffness and slowness of movement, and many sufferers eventually find it difficult to walk, talk, swallow or write.

But science has produced a range of drugs that can go some way to controlling the most debilitating symptoms. Mainly, they act either by being made into dopamine by the brain, or by stimulating the parts of the brain where dopamine works. Inevitably, such potent medications have side-effects and after several years' use, some begin to become less reliable. Yet, providing a patient's neurologist can find the right drug in the right dose at the right time, the long-term outlook for Parkinson's sufferers is better than it ever was.

Treatment is aimed at alleviating symptoms rather than repairing the brain. Although the disease is not fatal, it can eventually cause pneumonia, kidney disease and other potentially fatal problems. But while there is no certainty, doctors do believe Fox may see a cure within his lifetime.

Because his medication loses its effectiveness over time, Fox uses it sparingly. "You're your own lab rat," he says of the constant raising and lowering of doses as the situation demands. Four years ago, he also underwent a radical new procedure, a thalamotomy, a type of brain surgery intended to stop some of his more severe tremors by destroying the malfunctioning nerve cells in his brain. The success rate of the operation was nearly 90 per cent, his doctors told him, but there was also a five per cent chance of coma, paralysis, or even death.

"I had fears," Pollan said after it was over, "but he had no question it would be successful. He just said, 'Don't worry. This is going to be great.'" The surgery eradicated the worst of Fox's tremors, allowing him to pursue the next stage of his career - as an activist. Using his celebrity to open fund-raising doors, he got involved with the Parkinson's Action Network and lobbied Congress for federal funds for research.

"I can still perform my job ... help out with the daily tasks and rituals involved in home life," he testified before a roomful of legislators in Washington, DC. "But I don't kid myself. That will change. Physical and mental exhaustion will become more and more of a factor, as will rigidity and tremors ... I can expect in my forties to face challenges most wouldn't expect until their seventies or eighties."

Does Fox have any niggling doubts about using his celebrity to further his cause? "Whether or not it's right for a celebrity to open these doors ... we don't have time to look at the ethics of it," he replies, candidly. "We need to run. We'll let that be sorted out down the road." Fox recently joined forces with another high-profile Parkinson's sufferer, Muhammad Ali. Last year they made an affecting, effective publicservice announcement about the disease. Fox speaks of Ali with reverence as he recalls their first conversation.

"For some reason I was speaking to him from my phone in the bathroom," he begins. "So, I'm standing there, talking to Muhammad Ali for the first time, and I couldn't look anywhere without looking into a mirror.

"Here's this guy, my hero, saying, 'I hear you've got Parkinson's. I'm sorry to hear that,' which floored me immediately. It was such a human thing to say. I was crying and trying not to let him hear me on the phone. Then he said, 'We're both in this fight now, and we're going to win.'

He made me a partner, in a sense."

Although the focus o f his life has changed since Parkinson's, Fox hasn't given up on his Hollywood career. He has a cameo in the road movie Interstate 60, starring his old Back to the Future pal, Christopher Lloyd, as well as Gary Oldman, and he has provided the voice to several characters in animated films, including Stuart Little, Atlantis: The Lost Empire and the forthcoming Magic 7. Talking to Fox in the flesh and witnessing his drive and energy, it sometimes is hard to believe that he is suffering from a degenerative disease.

"It is a terrifying word," he confesses. "Like 'decay' or 'deteriorate', the sense of loss is frightening. But it also implies a process occurring over time - that there is time, you have some time, and so you want to use it well."

With the right funding, Fox really believes a cure is only a decade away. "The thing about Parkinson's research, and a lot of neurological research, is that it's a great situation where the science is way ahead of the money," he says in his infectiously upbeat manner.

"There are people out there who know what to do, they just need the resources."

Fox could have left the public arena quietly and spent all of his energy and time with his family. Instead, he chose the more challenging path of going public. "You know, a friend asked me what has driven me throughout my life and career," he says. "I explained that I've always tried to move forward as if I were waiting for the other shoe to drop. And he said, 'The other shoe has dropped. You have Parkinson's disease.' I thought, yeah, it has, and I'm living with it. And it is OK. I'm still me - me with Parkinson's.

"Now people look at me and think, 'My God, could that happen to me?' And when I look back at them, it's as if I'm saying, 'It might, and maybe you'll be OK. Just get there when you get there.'"