This report aired Sunday, April 16
Whether he’s center ice or center stage—or front and center in a polarizing political debate, Michael J. Fox knows what everyone around him is thinking.
Michael J. Fox: You know, people would come up and kind of go to hug me and look me in the eye and say, “Are you okay?” But I started looking in their eyes and I see that you’re looking at me and I could see THEIR fear. Not for me but for them that they might get sick one day and what was that gonna be like. And then it was like, “Oh, now I get it. You’re not coming to hug me, you want me to hug YOU. So I give them a hug and say it’s okay, you’re gonna be okay.”
We first knew him as the cocky conservative son of liberal parents on “Family Ties.” Then as the beloved time-travelling teenager in the blockbuster movie trilogy, “Back to the Future.”
But in 1998, while enjoying sit-com success again on “Spin City,” he revealed something he had kept secret for seven years: He has Parkinson’s disease. Soon thereafter, Michael J. Fox was forced to sacrifice his career and bid farewell to acting, for good... or so he thought.
But Michael’s made a habit of exceeding expectations — even his own — and this past winter, he returned to television as a terminally ill corporate executive on “Boston Legal.”
Katie Couric, NBC News: Has that been fun for you?
Michael J. Fox: It was really fun. I was really nervous about it and I didn’t really know what to expect. Because, you know it’s this weird thing. I show up for something and my body, if it shows up, and I never know if we’re both gonna get there at the same time. That was a process of letting that go. This sense of privacy, of the sense of—of—
Michael J. Fox: Control. And once I let that go, you know, it opened the door for me to do so many things.
Michael first opened his doors to Dateline crews six years ago. We’ve watched him evolve from a Hollywood star to a selfless crusader of scientific research.
Couric: I mean, having become this very vocal and very public, which I know, hasn’t always been easy for you, by the way.
Michael J. Fox: I’m not crazy about it.
Couric: Activist and advocate for Parkinson’s. And you know, I know you’re very humble about it, but really. I mean a lot of people would not choose that path.
Michael J. Fox: Well I think there was this seven years where I just didn’t talk about it. And I’m really grateful that I took that time. And I had some guilt about it for a while. But I got past that. So once I started to be open about it and be public about it, then the opportunity really jumped out at me. And that it was a chance to do something.
It was a chance to cure an incurable disease. Parkinson’s or P.D. is a progressive, neurological disorder affecting 1.5 million Americans, and millions more worldwide.
Parkinson’s happens when certain brain cells, the ones that control movement, decay and die. The loss of these brain cells causes involuntary movement like tremors, shakiness, and eventually, paralysis. Medication helps, but allows patients like Michael to function for only two or three hours at a time.
Couric: In other words, when it comes to planning for this interview—
Michael J. Fox: Yeah.
Couric: Did you have to time your medication—
Michael J. Fox: Yeah.
Couric: And say, “Okay I’ve got a—I’m gonna have a window.”
Michael J. Fox: I have to time when I wake up. Cause once I wake up the party starts. If I can avoid controversy in the morning-- (LAUGHTER) you know, with two with four kids it’s not as easy. Then I’m okay.
Couric: Do you find agitation really does affect you?
Michael J. Fox: Oh yeah. Absolutely. Like sitting right here, I’m much more symptomatic right now talking to you than I was talking to you ten minutes ago--
Couric: Because you’re a little nervous being around me? (Laughter)
Michael J. Fox: Yeah, exactly. Well, now that you’re a big shot.
At Capitol Hill, Michael is the big shot. Or you might say "King of the Hill." Back in 2001, the National Institutes of Health estimated it would cost one billion dollars to find a cure for Parkinson’s disease. The only person Michael knows with that kind of capital is Uncle Sam. So he’s testified twice before Congress for increased federal funding. And he’s rallied support from both sides of the aisle, namely Democratic Senator Tom Harkin, and Republican senator (and cancer survivor) Arlen Specter.
Couric: You, Tom Harkin, and Arlen Specter. You’re like tight.
Michael J. Fox: Yeah. Strange bedfellows. But he’s been an amazing champion of medical science.
But not all politicians are on the same page as scientists. Parkinson’s experts believe in stem cell research as a promising prospect for a cure. But the source of those cells — human embryos — touches a sensitive nerve in the nation’s capitol.
In August 2001, President Bush announced he would permit limited federal funding for stem cell research on 60 existing stem cell lines. But he stopped short of allowing the federal government to fund research on stem cells derived from frozen embryos, about 400,000 of which exist at fertility labs across the country.
Michael J. Fox: I mean, it was so disingenuous. Because he knew that it couldn’t go ahead in any really kind of affective way—because he handcuffed it. He said that “I’m giving you a car,” but he didn’t give us any gas. So, we couldn’t get anywhere.
Couric: I guess a lot of people worry that it’s a slippery slope.
Michael J. Fox: Getting out of bed in the morning is a slippery slope.
So last summer, Michael went to Capitol Hill once again, this time to bolster support for a bill called HR-810. The Stem Cell Research Enhancement Act, which would expand federal funding for research on the surplus of frozen embryos.
Couric: I know it may come up for a vote this spring and the president has pledged to veto it if it passes saying quote, “Destroying nascent human life for research raises serious ethical problems. And many millions of Americans consider the practice immoral.” What do you make of those comments?
Michael J. Fox: I would say that, from my opinion, it’s an amazing pro-life thing to do to take those cells and to endeavor to improve the lives of millions and billions of people that are alive now and will be alive in the future by coming up with cures—and treatments for diseases. So, this bill that you’re talking about, 810 is gonna pass. I kind of learned that we’re conditioned to wait for things to fall out of the sky. And sometimes they do. But sometimes you have to—you have to see the clouds. And so I just said how can we do that?
“Muhammad Ali walks in and people gasp,” says Michael J. Fox. “Even little kids who have no idea who he is. They just know he’s someone magical.”
For Michael J. Fox, the boxing legend isn’t just an icon, he’s an ally. Ali’s reach goes way beyond boxing, and now that Michael’s in his corner, they’re a powerful one-two punch in the fight against Parkinson’s.
"Sometimes he’ll look at me and he’ll tell me a joke without saying anything and he’ll make me laugh," says Fox. “And then other times he can look at me and I can tell he’s saying ‘This sucks doesn’t it?’ I mean, what are a couple of pretty young guys like us doing in this boat?”
At 64 years old, Ali is in the fight of his life—one that began more than 20 years ago. And unlike George Foreman or Joe Frazier, this opponent won’t go down.
But then again, neither will he.
I had the rare opportunity to visit with the champ and his wife, Lonnie, at the Parkinson’s Research center that bears his name in Phoenix, Arizona.
For Lonnie, if anybody can illustrate the visible effects of what Parkinson’s can do to a person, it’s with Muhammad. “Because of what he was and what it has done to him now. Not that he’s anybody to be pitied, but it is something.”
Slideshow: Muhammad Ali Ali is a symbol of defiance and courage — and sometimes, more defiant than courageous. In his prime, he was an impossibly complex and compelling figure: a champion, showman, dissident. By the time he was 22, he’d won Olympic gold and was crowned heavyweight champ. Then in 1967, he was stripped of his title and prosecuted for evading the Vietnam draft.
But eventually, people began to see Muhammad Ali in a different light — as a martyr taking a principled stand against an unjust war. By the time he’d regained the title in ‘74, he’d gone from outcast to icon.
Lonnie Ali: I mean, somebody who has come from the mountain—the top of the mountain, like Muhammad, this fabulous athlete with all the skills that and gifts of an athlete that anyone could ever have bestowed upon them, and then to be afflicted with Parkinson’s Disease. But it’s really about your attitude and how you approach, you know, this disease as well as how you approach life. And Muhammad approaches this like he does everything else, there’s a reason for it.
Lonnie says these days Muhammad takes comfort in vintage films starring… who other than himself?
Lonnie Ali: Documentaries of himself, footage of himself, news, whatever it is, if he’s the subject he likes watching it. He’s his own best fan.
Before his fights, he was poetic. During his fights, it was poetry in motion. Today, sadly, that fancy footwork has given way to the slow shuffle of Parkinson’s. And the man once dubbed the “Louisville lip” for his gift of gab, is all but silenced by his affliction.
Katie Couric: Have you almost come up with a kind of non-verbal sign language of sorts?
Lonnie Ali: Muhammad has good days and bad days. I think that I have been with Muhammad so long, I can read him. I can just read what he wants, I can look at him and tell what he wants. Which is interesting (laughs), but I can do it.
They’ve been married almost 20 years. But they’ve known each other much longer. Their moms were best friends when he was 20, and she was 6 years old.
Couric: How much of that man is still very much in the Muhammad of today?
Lonnie Ali: I will tell you, the prankster is absolutely there. The little kid is still there. The proud, dignified man is still there. The man who wants to affect change is still there. The only thing that’s not there is the Muhammad who would climb through the ropes of the ring at a moment’s notice and run around the ring and spar and that kind of thing.
He could have fooled me—this was the scene when Muhammad decided to pop in on some young amateur boxers at Al Rodriguez’s gym in Phoenix.
Couric: And he still completely takes the air out of the room when he walks in a place doesn’t he? I mean—
Lonnie Ali: Yes, and enjoys every minute of it. (Laughs)
Couric: You roll you eyes.
Lonnie Ali: No, I mean, Muhammad still feels like he’s the Muhammad of old. You know, he still wants to make that impact, he still wants his presence to mean something when he walks into the room, how many heads turn.
But he’s is making an impact in another, more meaningful way. The Muhammad Ali Parkinson’s Center offers a full range of outreach programs for people with P.D., with the aim of improving quality of life -- from education, to exercise, to prescription drug coverage for Arizona residents. They even offer golf.
But here’s the real stroke of genius—it’s all free, thanks to a star-studded annual fundraiser aptly named “Celebrity Fight Night.”
Couric: You all really do an amazing job reaching out to people who are dealing with this disease, as well as their families.
Lonnie Ali: Right.
Couric: But you don’t charge them a penny.
Lonnie Ali: That’s the whole purpose because people are devastated by this illness, their livelihoods are taken away. We’re fortunate, we can afford the medication, we have insurance. A lot of people don’t. So it was important for us that those who were either uninsured or underinsured had the opportunity to have the medication that they need, given the support that they needed, and that’s what this center does.
And during our tour, a few of the beneficiaries of the Ali center were grateful for the opportunity to thank the champ personally.
Couric: What a gift for these people.
Lonnie Ali: It’s a gift for us. I mean, it’s a gift that we’re able to reach out and touch somebody and affect their lives in that way and make it. You can never make it whole again, but you can try to make it as whole as you can. You know, give them dignity and quality of life. And that’s important.
He never uttered a word the day of our visit. But for young athletes like John Askew, Muhammad’s mere presence spoke volumes. Hours after this encounter with his childhood idol, John won his amateur boxing bout that very night.
Lonnie Ali: You know, Muhammad still has the ability to inspire people, it has not taken that away from him.
Doctors don’t know what caused his Parkinson’s, but they don’t blame boxing. Lonnie says, neither does the champ.
Couric: Do you think he ever wishes he had bowed out of boxing sooner?
Lonnie Ali: No. Muhammad never has regrets. He never looks back, and he never regrets—especially about his career.
Now, perhaps the only person who isn’t overshadowed by Ali’s still towering presence is a man two-thirds his size.
Lonnie Ali: You know Michael has inspired Muhammad because a lot of times before Muhammad actually met Michael, Muhammad wouldn’t speak in public. He was very, you know, aware of his speech. And he was very shy about speaking on camera, where at one time this was a man who loved the camera, you couldn’t shut him up. And he saw Michael go out in front of a whole lot of people and start talking about Parkinson’s disease and everything, you know, and just being very courageous about it, not hiding it. And after that Muhammad started doing the same thing.
Michael J. Fox: I think he on some level saw what he could give to people if he could get passed what he was worried about having lost. And he does this magic trick. And it’s so… it always makes me laugh the irony of that. And there’s this hokey magic trick he does, but after two seconds you figure it out. And then, “But you’re magic. You don’t need to do this trick, you’re like one of the most magical human beings that’s ever existed.” And he speaks to his humility that he thinks he has to do this thumb trick.
Perhaps it speaks to Muhammad Ali’s life-long philosophy: if you do get knocked down, you get back up.
Lonnie Ali: You know—I’m not gonna sit here and act like it hasn’t done anything. Of course it’s diminished things. But there’s so much more to look at. Muhammad always looks at the glass half full. That’s just his approach to life.
Couric: Let’s talk about some of the perplexing risk factors that some studies have yielded. People who take more risks with their health including smoking and drinking are less likely to develop Parkinson’s. PD affects one in five Jewish people. Biological scientists, teachers, doctors, clergy, and computer programmers have the highest odds. And people with higher levels of education and demanding careers have an increased risk.
Michael J. Fox: Well, the thing about the people that are professionals—and education people having a higher instances of it… again they are more likely to seek diagnosis.
Michael J. Fox: More likely to seek treatment. And as far as the risk stuff—you know, it’s strange. I mean, it’s no secret I was a smoker and a drinker. So, I mean I did my bit to not get it. (laughter) I got it. So anytime you attached kind of labels or whatever, it is a disservice to those who don’t fall into those categories.
Video: Parkinson's causes and cures In the six years Dateline’s been following Michael’s story, his condition has remained relatively unchanged. But that’s unusual. Patients like him, diagnosed before they’re 50, are said to have young-onset Parkinson’s, which usually progresses faster. So while Michael cares about knowing the cause, his more immediate concern is finding the cure.
Michael J. Fox: If I’m lucky I can convene, motivate, inspire, cajole the people who can do something.
Since it’s inception in 2000, the Michael J. Fox foundation has awarded more than $70 million in scientific grants, supporting more than 200 Parkinson’s research projects, in 18 countries. So it should come as no surprise the foundation’s headquarters are located down on Wall Street.
President and CEO Debi Brooks’ last job was with Goldman-Sachs, so she knows something about risk & return. But she admits, going to work for the Fox foundation presented an odd paradox.
Debi Brooks, president and CEO of the Michael J. Fox foundation: I remember in an early planning meeting with folks that ultimately ended up being on our board of directors. Michael had everybody in the room, and he says, “You know, it occurs to me that I have all these brilliant business minds around the table who are saying they want to help. But, in a weird way, I’m gonna ask you to do something that you’ve probably never done before which is try to figure out how to go out of business.”
Michael J. Fox: I figured, if people are gonna be motivated by my name and my situation or identify it with their situation or their family and want to direct funds towards something that had my name on it that I had a responsibility to make sure that money came in and went out. And it came in and it went out to the best researchers doing the best work now. Stuff that’s gonna get to the patient.
And that’s what’s happening. While there are 87 Fox Foundation grants active in the research community right now, Michael’s especially looking forward to the completion of three clinical trials he hopes will yield promising results.
One is called “Gene Therapy.” Remember, in a Parkinson’s patient, many of the brain cells that control movement are dying or dormant. But Dr. Raymond Bartus is leading a team of neuroscientists at Ceregene incorporated in San Diego — trying to “regrow” those cells. They take a virus and inject it with a gene they’ve produced. The virus is inserted into a part of the brain called the putamen, where it disintegrates, thus releasing the gene into the brain. In theory, the gene will act as a kind of “fertilizer” for those dormant cells and stop, if not reverse, the disease.
Dr. Bartus: We’re hopeful that in time, we’ll be able to show significant benefits of this novel approach.
Meanwhile, at the University of Florida, Dr. Christine Sapienza is working on something critical to late-stage P.D. patients who struggle with swallowing.
Dr. Sapienza: One of the things that people are less aware of is that with Parkinson’s Disease the number one cause of their death is not from an inability to walk or an inability to speak, but they die from what’s called aspiration pneumonia.
In the case of a patient with P.D., you can notice the water leaking into the airway, which can cause choking and infection, leading to pneumonia. Dr. Sapienza’s team is testing 48 patients using a device called an expiratory muscle-strength trainer.
So, anybody that had weak respiratory muscles, particularly the muscles that you use for breathing out, would use this device to strengthen them. It’s sort of like a weight machine.
And in Beijing, Dr. Bill Chan is studying roughly 400 patients for twelve months, looking at the ways compounds found in green tea may stop the progression of Parkinson’s.
Couric: Are you drinking a lot of green tea these days?
Michael J. Fox: You know, it makes me pee. (Laughs)
Couric: Thanks for sharing that.
If it sounds more like he’s drinking the Kool-aid, keep in mind: Michael’s not in denial. He’s in a hurry.
Couric: You used to say that you thought there would be a cure by the time you were 50.
Michael J. Fox: Right. In my 50s.
Couric: In your 50s. Okay, well that gives us a little more wiggle room – you’re 44 now.
Michael J. Fox: (Laughs) Wiggle room is an appropriate pun.
Couric: Do you still believe that?
Michael J. Fox: Well, here’s the thing, if it doesn’t happen it won’t be for lack of trying. We know that we’re doing everything that we can do. And I think that it’s gonna bear fruit.
Michael describes his being back in front of the cameras on “Boston Legal” like being a right-handed painter forced to paint left-handed.
Katie Couric, NBC News: What did you mean by that exactly?
Michael J. Fox: Well, when I’m acting, you know that we shoot scenes—we shoot a master and then we shoot a close up and then we’ll shoot a two shot or whatever. So actually what you see isn’t all happening at once. It’s a series of separate events that are edited together.
Michael J. Fox: So if I do something in the master, I don’t when I get around to my close up if I’m gonna be able to do that.
Michael J. Fox: So I have to do this kind of redactive choice making. But actually the thing that happens that’s really cool, that I really pleased with, was it makes me a better actor. It makes me simpler. So the metaphor of painting left-handed and right-handed is it’s not ideal and not what I choose to do... but I’m still painting.
The average person with Parkinson’s might take as many as 19 pills a day. Michael says he’s lucky— he only takes five. One of them is called Levadopa, which remains the gold standard for treating the symptoms of P.D. But it has a noticeable side effect, called dyskenisia.
Michael J. Fox: A lot of times when people see me—like right now, the things that they’re noticing are not strictly speaking the symptoms of Parkinson’s. They’re the symptoms of the medication that I take. Which is that, you know, the kind of rocking movement.
A typical day can be fraught with harrowing extremes. Michael says his challenge is navigating the passage between “on” and “off”.
Couric: ‘Off times’ is when the—
Michael J. Fox: When—
Couric: The medication isn’t working, right?
Michael J. Fox: Yeah. But you know, sometimes when it’s like that, I kind of like it, if I don’t have anything to do. I’m just around the house. I like to let it go where it’s gonna go. And I don’t know -- just to see what it is, to let it go. You know because I feel safe. I feel safe in my home. I feel safe with my kids, with Tracy. I feel safe with who I am. So it’s good for you to hand check that and just see it. See what they’re bringing.
Though “Boston Legal” has expressed interest in bringing Michael back, he’s not considering any permanent return to acting. When he’s not wearing his crusader’s cap, Michael’s favorite role now is playing dad. With their oldest son turning 17 in May, and three daughters ranging from 4 to 11, Michael and his wife, Tracy Pollan, have their hands full in more ways than one.
Michael J. Fox: I was already starting learn when my daughters were born that what is perceived as a loss was actually just things that were being cleared off the deck. And other things were filling those holes. And what was filling those holes was just much better, much bigger. And much more—it was just more powerful than what I was losing. What I was losing was a lot of superficial stuff. And what I was gaining was a lot of deep important stuff and knowledge and understanding, compassion. And I think humility. And just good stuff.
And Michael says when it comes to his kids, Parkinson’s is not the elephant in the room.
Couric: How do they handle this?
Michael J. Fox: I don’t know that they even really notice, I mean, in a way. They’re so patient with some things. You know? Like if one of them needs a spoonful of cough medicine or something, they’ll say like, “No. Dad, you’re not doing that.” You know and it’s very open in our house about it. We don’t talk about it a lot, but we don’t not talk about it.
Michael says his family will always be his number one priority. But he knows he’s got another family depending on him too. And the actor turned activist now sees himself as part of the greatest ensemble he’s ever had the privilege of working with.
Michael J. Fox: At some point I realized this isn’t just about me. So when I get an opportunity to meet with people, I take it. But that camaraderie and understanding and empathy is really great. And also I see that people have invested a lot of hope what I’m doing. And I want to honor that and I want to respect it. And I see such courage. There’s an urgency but there’s also strength that I prefer to it as urgency and not desperation because too strong to be desperate. They’re urgent. They adamant and they’re committed and they’re hopeful.
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