Malina Saval August 9, 2018
It’s a cool june afternoon in New York and Michael J. Fox is sitting in his Upper East Side office, his dog, Gus, a lumbering rescue mutt — Great Dane, hound, Chow, some Lab — napping underfoot. The pale gray walls are decorated with rustic signs from some of Fox’s favorite vacation spots — Vermont, Martha’s Vineyard — and a photo of Fox and Boston Bruins hockey great Bobby Orr is propped up on a bookshelf, along with Fox’s Emmys and Golden Globes and his Grammy award for spoken word album, an adaptation of his 2009 memoir “Always Looking Up: The Adventures of an Incurable Optimist.”
Fox, who is being honored by Variety as philanthropist of the year for his work on Parkinson’s disease research, is deeply optimistic at 57. A military brat raised on various bases across Canada, Fox was a plucky, free-spirited kid, prone to recklessness and adventure. At school and at home, he was willful and precocious, never doubting that someday he would make a name for himself.
“I was built to overcome,” says Fox, a nod to both his short stature and emotional tenacity. “I was built to survive.”
By his mid-20s, the gifted comic actor was a bonafide star, capturing America’s attention as brash Reaganite Alex P. Keaton on “Family Ties” before securing worldwide fame as time-traveling teen Marty McFly in the “Back to the Future” trilogy. By 1985, Fox was everywhere, a Hollywood heartthrob featured on the covers of magazines ranging from Tiger Beat to GQ. Fox’s celebrity became so explosive that he and wife, actress Tracy Pollan, whom Fox met while shooting “Family Ties,” married under the whir of paparazzi helicopters overhead. There were sports cars and boozy soirees and a slate of big-screen projects in which Fox would take a dramatic turn, from “Bright Lights, Big City” to Brian De Palma’s “Casualties of War.”
“It was all a big party,” says Fox. “It was all about me and what I would do and what I was going to do and what I had done and what I could remember doing last night.”
That changed one Tuesday morning in November 1990. Fox was in Gainesville, Fla., filming “Doc Hollywood” when he awoke in his hotel room to a raging hangover and a relentlessly twitchy pinky finger that presaged a life-changing medical diagnosis: “The doctor told me, ‘you have Parkinson’s disease.’”
Parkinson’s, a progressive nervous system disorder that affects movement and is characterized by tremors, muscle rigidity and changes in speech, as well as a host of other debilitating symptoms, is typically diagnosed in patients around the age of 60. Of the roughly 6 million people worldwide (1 million in the U.S.) fewer than 10% are diagnosed with young-onset Parkinson’s at age 50 or younger. Linda Rondstadt, Alan Alda and Leonard Maltin were all diagnosed well past their 50th birthday; Fox was diagnosed at the age of 29.
“I got this diagnosis, and it freaked me out, and I ran from it,” says Fox. “I drank to obliterate it, to make it go away.” Then he reached a point where he decided to try and deal with the disease, asking himself, “why don’t I just try to understand what it’s telling me, what it means?’ I said, ‘I need to learn more about this.’ And after it was alarming and freakish and scary and nightmarish, Parkinson’s was settling. I was able to accept the fact of it, accept the truth of it. But acceptance doesn’t mean resignation; it means accepting and then moving on.”
In 1998, during his run on the hit ABC sitcom “Spin City,” Fox revealed his diagnosis publicly. Overnight, he became the face of a disease that had thus far been lost in the shadows, considered by society to be a “shaky old person’s disease.” Fox testified before Congress, urging the government to allocate more funding for Parkinson’s research. He reached out to the Parkinson’s community and the Parkinson’s foundations already in existence and saw what they were accomplishing, and also what was missing.
Fox went from believing his life was over to thinking “not only can I live with this, but I need to commit to this community and take advantage of the attention that I get. Whether it’s bidden or unbidden, it’s there and it’s powerful.”
In 2000, Fox left “Spin City,” for which he won his fourth lead actor Emmy, and dove full time into his newfound role as activist. Later that year, he established the Michael J. Fox Foundation for Parkinson’s Research. To date, MJFF, with foundational partnerships in Europe, Asia and North America, has funded more than $800 million in research grants and projects worldwide, more than any other Parkinson’s foundation of its kind.
Michael J. Fox became a star on “Family Ties,” left, and exited “Spin City,” above right, to work on his Parkinson’s foundation.
“I wanted to identify the research and have the money go out right away,” says Fox of MJFF’s driving philosophy. “I wanted to inspire scientists to do the work now. We’re not here to sit on the money, we’re here to put it out. And it’s just fantastic because it’s grown from just that instinct to immeasurable heights and dynamically new possibilities.”
With a staff comprising pioneering neuroscientists, research scientists, public policy experts and geneticists, MJFF has launched and sustained myriad breakthrough initiatives that have radically changed the face of Parkinson’s disease research, propelling the medical and scientific communities closer to a cure. The foundation provides webinars and seminars for patients and their caregivers.
From Fox Insight, an online clinical study designed to amplify patient voice in Parkinson’s research, to Team Fox, a grassroots community fundraising program that spawns such nationwide events as Fox Trot 5K walk/runs and Pancakes for Parkinson’s breakfasts, MJFF is 100% patient-focused, empowering individuals to play an active role in combating the disease.
“[Michael] has led by example to be engaged and not just to say ‘I have Parkinson’s,’ but this is what we can do as a community,” says Deborah W. Brooks, MJFF co-founder & executive vice chairman. “And it’s really him as a peer speaking to other peers, whether it’s a Parkinson’s patient or their families or our organization as a whole.
Our whole organization is part of that voice, which is, that this is not something that happens to you and then you sit by idly and hope good things fall from the sky, but that there are a variety of ways in which patients and families can step into this and be active. He has become such a role model and our organization has really become a platform for many, many patients and families to not be passive observers.”
That people are even talking about Parkinson’s on such a global scale is revolutionary, and an advancement for which Fox and the foundation deserve credit. Wherever Fox goes in the world, whether it’s Greece on vacation, or Sweden, where the Karolinska Institute awarded him an honorary doctorate in medicine, he’s bringing knowledge of the disease to people in those countries.
More than that, he’s bringing them hope.
It’s important to Fox that he communicates information about the disease without people feeling uncomfortable. “I want to say to them, ‘I know what you’re thinking. It’s OK,’” he says. “We’re always afraid of stuff we don’t understand. People would look me in the eye and say, ‘how are you?’ and expect to see fear in my eyes and they just see their own fear reflected back at them. It didn’t make me angry, it made me feel kind of responsible. I want to relieve people of that burden so we can get to the conversation. We give these people as much as we can. We’re sharing this. This [foundation] is an act of fellowship.”
What makes Parkinson’s tricky to treat, and somewhat complicated to approach, is that no two patients with the disease suffer alike. It manifests itself in a variety of nefarious ways. Where depression and anxiety might strike one person, another might develop digestive function problems, cognitive issues or insomnia. While there are genetic links — there are clusters, for example, within the Ashkenazi Jewish community — the cause of the disease is unknown. As people continue to live longer, scientists predict the global prevalence of Parkinson’s to double by 2040, making the foundation’s work ever more urgent.
“Everyone’s got their own disease, everyone’s got their own Parkinson’s. It’s to the point where we suspect it’s a number of different diseases,” says Fox, who takes L-Dopa, a dopamine-replacement medication, to help control his tremors and shakes. Sometimes it works well, other times it wears off too quickly. “Sometimes, I have too much dopamine,” says Fox. “I miss the mark. I miss my timing.” Like most drugs, L-Dopa carries with it adverse side effects, another motivating factor in MJFF’s search for cutting-edge treatments.
“One thing we’re super excited about is that in the last 10 years we’ve seen a lot of new drugs being tested in the clinic and a lot of new drugs on the market,” says Brian Fiske, MJFF senior vice president, research programs. “A lot of them are a twist on what we have, optimizing delivery of the dopamine medication. And there are new drugs on the market that aren’t classically thought of as Parkinson’s medications. They are treatments directly targeted toward lesser-known symptoms and side effects of the disease. With all this R&D activity, there is tremendous cause for hope and optimism about what’s to come in our ability to improve treatment options for people with Parkinson’s in the near future.”
One of MJFF’s latest and most breakthrough programs is its Parkinson’s Progression Markers Initiative, a landmark clinical study to identity biomarkers of Parkinson’s disease. Biomarkers are disease indicators that are critical missing links in the search for better Parkinson’s disease treatments.
“After it was alarming and freakish and scary and nightmarish, Parkinson’s was settling.”Michael J. Fox
“We are getting closer to being able to recognize the disease before symptoms are evident and treat it early,” says Fox. “And I love this idea that you could still have Parkinson’s, but it never gets to the point where it’s obvious, where it’s symptomatic, where we try to figure out how to fix this wreck, how to prevent the wreck before it happens.
People will say to me, ‘are you going to find a cure in time for you?’ I say, ‘I honestly don’t think about it.’ It’s essential that we find a breakthrough, period. I’m just put in a position where I can help motivate people in the scientific community and the patient community to solve this problem before future generations wake up at 57 and find they are in this situation.”
And while Fox’s situation is not without its challenges, there is also great beauty, as evidenced not only by the success of the foundation, but his three best-selling books and kudos-filled career as an actor. Since his diagnosis, Fox has won a guest actor Emmy for his recurring role as a wheelchair-bound drug addict on FX’s “Rescue Me”; played a manipulative attorney with dyskinesia (a Parkinson’s-like movement disorder) on the hit CBS drama “The Good Wife,” earning yet another Emmy nom; and played a news anchor with Parkinson’s disease on NBC’s “The Michael J. Fox Show.” Most recently, Fox completed a five-episode arc as Ethan West, a conniving, shark-like power attorney, on ABC’s “Designated Survivor.”
“I love to show that people with disabilities, that people with Parkinson’s can be assholes, too,” says Fox. “And that’s important. I feel for the disabled community and I feel part of that community. We are fully rounded people, we just have this issue that we deal with.”
Fox’s life, he maintains, is punctuated by joy. “I’m a lucky man,” he says, and that’s not despite his illness, but, at least in part, “because of it.” The foundation, and its mission to help millions of people, has infused his life with meaning.
Each year, Fox plays guitar at MJFF’s fundraising gala, strumming Chuck Berry’s “Johnny B. Good” (a reference to his role in “Back to the Future”) with the likes of Chris Martin and Brad Paisley. He plays golf and is working on a fourth book. “I literally wear out the rug,” he jokes of his writing process, which includes pacing the floor and dictating to a writer’s assistant. More than anything, he says, it’s his family — Pollan and their four children — on whom he relies for strength and inspiration.
“If I were to use one word to describe my kids it’s kind. They are really kind people,” says Fox, tearing up. “They take it in, it’s just natural. It just is what it is. I don’t know how we got so lucky that they turned out that way but they apply that to everything they do. They didn’t get anxiety from [my Parkinson’s]. They got peace from it. And it’s kept them honest. They pour orange juice for me. It’s great. You understand there’s bigger stuff going on than just yourself. Compassion is really important, and empathy and understanding and openness. You boil it down to what’s important now, what’s important in that moment.”
As the Michael J. Fox Foundation strives tirelessly to find a cure for Parkinson’s, Fox’s advice for others living with the disease is “to accept it, to own it.”
“There’s no good answer for how to deal with Parkinson’s,” he says.
“There’s no flat thing. You experience it and you push through it and you try to make as many friends as you can along the way. You can’t depend on other people’s kindness, but in recognizing it’s in there you can elicit it. So why have a glib outlook?” he queries. “If you obsess on the worst-case scenario and it happens, then it’s like it’s happened twice. So stay as positive as you can, because it might make the difference.”
https://variety.com/2018/tv/features/michael-j-fox-parkinsons-overcoming-fear-and-race-for-cure-1202898240/
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