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A Conversation with Michael J. Fox

Aired October 2, 2010 - 07:30   ET



MICHAEL J. FOX, ACTOR: With Parkinson's, it's like you are crossing the road, and you get stuck in the middle, and you know the bus is coming and you can't get out of the way. So, you can kind of freak out and you can kind of go, that bus is going to hit me at some point, even though you don't know how fast or how big.


DR. SANJAY GUPTA, HOST: Welcome to a special edition of SGMD.

You know, there's so much we don't know about Parkinson's disease -- exactly what causes it for instance, and why would someone at the age of 29 starts to develop the symptoms? No one knows for sure.

But this we do know: Michael J. Fox is in many ways become the handsome face of Parkinson's. Did you know he's had the disease for 19 years now? What is his life like day to day? What is he planning on doing to do with the nearly $200 million he has raised? What we can all learn from Michael J. Fox?

He doesn't do a lot of long interviews because he gets so tired. But, today, he had a lot to say.


GUPTA: People, when I said I was going to be interviewing you, people would ask me, how is he doing? And I don't -- again, I don't want to belabor that, but I'm just -- I mean, you're doing OK.

FOX: Yes. What I was going to say was that I refer to Parkinson's and the effect it's had on my life as gift. And people are dubious about that and kind of wonder how I can say that.

But I quantify -- qualify it by saying it's a gift that keeps on taking, but it is a gif, because it's really opened me up to more kind of passionate, curious, risk-taking person. And give me a -- I wouldn't call the foundation my magnus opus, but it's definitely one of the most important things I have done and, you know, probably will do in my life.


GUPTA: Right now, when you -- when you're moving like I see you grabbing your left leg, are you trying to tell your left leg not to move like -- is that -- is that something you are constantly thinking about? Or --

FOX: You know something? It's like Whac-A-Mole. It's like -- it's like the arm will go. If I stop the arm and the other arm will go. I sit down, the leg will go. Cross the leg. It's going to go somewhere.

So, it's constantly moving it around until -- and then there will be times when I'll just stop and be still. I mean, right now, for example, if I wasn't talking to you, if I was just sitting, I'd be perfectly still.

GUPTA: Is that -- is that the stress part of it? Or is that --

FOX: Yes. And it's just a -- again, it's like the stuff that fires and tells you, I want to pick up this glass is firing to tell that something is required of me here. And my mind can't tell my brain what it is.

GUPTA: When you wake up in the morning, is there a certain routine you have to go through? I mean, do you take your meds at a certain time? Or do you feel a certain way? How --

FOX: Well, it changes. But for the most part, when I wake up, I have a feature called dystonia, which is rigidity, a cramping. With me, it affects my feet. So, strangely enough, the first sound my wife often hears in the morning is me clumping across the floor, because I keep a hard pair of shoes right next to the bed. And I wake up and I put them on and immediately the stiffness the shoe kind of forces the foot to behave.

And then -- and then I wait, you know, probably half-an-hour, 45 minute before I - I mean, I might take a half pill just to get me started. But I might wait a couple hours before -- depending on what my day requires of me before I really kick in.

GUPTA: Things like, you know, tending to yourself, brushing your hair, brushing your teeth?


FOX: Well, I sometimes it would cooler with an electric toothbrush without the necessity of a battery or a charger. I just --

GUPTA: Put your hand in the --

FOX: Yes, put one hand and let it go.

Yes, I mean, all that stuff -- again, it's -- you just -- I'm just used to it. I'm just used to it. It's -- any of us have -- whatever we face in our lives, we find ways to deal and move forward. If we don't, it doesn't matter what you have, the result is going to be the same. You're not going to go forward. You're going to stagnate.


GUPTA: Let's take a look at how this all started.


FOX: Every morning, as long as I remember, I wake up in the morning, I got somewhere to go, I got something to do, you know? What do I got to do tomorrow when the alarm goes off?

GUPTA (voice-over): It's hard to believe it's been more than a decade since Michael J. Fox left the soundstage of his TV series "Spin City" in a final curtain call.

Fox had first publicly disclosed his Parkinson's diagnosis two years prior. The long hours on set were catching up with him, exacerbating the symptoms of his disease.

FOX: The stress of doing the show, it's kind of an X-factor. It's going to be interesting to see that removed from the scenario and see what effect that has.

GUPTA: Fox's decision to step away from the cameras was a dramatic change for a man who practically grew up on the screen, launching his television career in the early '70s in his native Canada. Small film roles led Fox to Hollywood, and soon, America came to know him as the young Republican Alex P. Keaton on the popular sitcom, "Family Ties."


FOX: That selfishness saved my life. I knew it would come in handy.


GUPTA: At its keep, "Family Ties" drew in a third of American households every week. Fox's work on the series won him three Emmy Awards and a Golden Globe.

It's also where Fox met his future wife, actress Tracy Pollan.


FOX: Sort of compliment.



GUPTA: The couple has been married for 22 years. And they have four children.

Fox's TV success propelled him to movie stardom with the blockbuster trilogy, "Back to the Future." Fox followed his role as Marty McFly with more than 20 films.

But it was on the set of the movie "Doc Hollywood" where Fox first displayed symptoms of early Parkinson's disease which eventually pushed him into a new role, that of advocate.

FOX: The war against Parkinson's is a winnable war. And I have resolved to play a role in that victory.

GUPTA: Fox works tirelessly in his quest for a cure for Parkinson's, fighting for funding, campaigning for politicians sympathetic to his cause.

His support for stem-cell research in the quest for a Parkinson's cure has, at times, sparked controversy.

Despite using his celebrity to point the spotlight in a different direction, Fox hasn't left Hollywood behind completely. With numerous guest appearances on TV series in recent years, Fox is still a familiar face and a line from his final episode of "Spin City" still rings true.


FOX: It's going to be OK. I'm going to bounce back from this.


FOX: It's not over, right?

LOCKLEAR: It's a long way from over.



GUPTA: And coming up, the moment when Michael J. Fox learned his life was about to change forever.


GUPTA: This may sound like a silly question, but are they sure you have Parkinson's?




GUPTA: This may sound like a silly question, but are they sure you have Parkinson's?

FOX: Yes, to an extent. But Parkinson's is this umbrella.

I mean, Parkinson's is -- I mean, in many ways, I have textbook Parkinson's. In other ways, I have idiosyncratic aspects to my experience. For example, I'm so tremendously sensitive to L-dopa. And over time, with a lot of patients, its efficacy wears off. It doesn't -- it isn't -- it isn't as --

GUPTA: You get a tolerance to it?

FOX: Yes, and also it comes with terrible dyskinesia, which I do experience, but not to the extent that I could. But you experience is your experience. It doesn't -- you can't push it out to fill a box that someone has created for it. And you can't -- and you can't shrink it to squeeze into a parenthetic notation that someone's made about it. It's your experience.

It's -- I'm pretty sure that I have Parkinson's. But what is Parkinson's?


GUPTA: Now, medically speaking, Parkinson's disease is actually pretty straight forward when you think about it. What you have is a particular part of the brain that produces a chemical known as dopamine. It helps us with motor skills, specifically, smooth muscle movements. But the brain of someone with Parkinson's disease isn't producing enough dopamine.

And why that happens exactly is anyone's guess. But the disease does get progressively worse. And as things stand right now, doctors can only treat the symptoms typically with a pill that looks like this. It's called Levodopa. And it's the single most effective treatment to control symptoms.

Let me give you a little bit of an idea of just exactly how this works. And what you have here is the pill going into the bloodstream and subsequently, it goes to the brain where it is converted into dopamine.

Now, here's the problem. When the pill starts to wear off, the symptoms come back. Sometimes, they are even worse and that all continues until the next pill is taken. Eventually, you can develop a tolerance to this medication as well.

So, there is some help, some progress really in trying to minimize that. It's sort of -- think of it like sort of a gel version of this particular medication. It's called Duodopa. And what happens is the drug gets released via tube directly into the small intestines, and patients can monitor their levels much in the same way that a diabetic does with insulin and be alerted before the symptoms get too severe. Now, this is currently in the clinical trial stage for approval in the United States, but already approved for use in 34 other countries.

Surgery is also an option for patients not responding well to medication. And the most common nowadays is something known as deep brain stimulation. And I want to give you just a little bit of an idea of how this works.

It blocks abnormal nerve signals that caused Parkinson's symptoms by implanting a battery-operated device about the size of a stopwatch and sending electrical stimulations which essentially the abnormal signals from ever reaching the brain.

And Michael J. Fox had an operation back in 1998. During his operation, which is called a thalamotomy, Michael was actually awake. He was actually talking to his surgeon.


FOX: So, he said make my -- make your handshake. And I tried to and I couldn't. And I felt this disappointment that I couldn't -- I couldn't, you know, give him what he wanted. Then, of course -- and I said I can't. And he said, we're done. And I was like, wow.

GUPTA: Operation was over because they accomplished the goal.

FOX: Yes, they accomplished the goal, which was -- you know, which was early for me. So, it was just about cessation.

And I had a big tremor on my left side, fully on the left side, and nothing on the right. And so, my whole life, you know, working and stuff was about manipulating circumstances so that I could pin that arm.

GUPTA: Put your hand in your pocket or --

FOX: Put my hand in my hand or busy it or something because that helped.

And -- but it just got too much. So, that's when I had the brain surgery. And then, of course, I had brain surgery, and it diminished the effects on my left side, but just due to the progression of the disease, within a few months, my right side started. So -- and I made the decision not to -- not to have another brain surgery.

GUPTA: Well, I don't want to belabor the point, but if they said to you look, it's not curative, but with stimulation, we can, you know, dial it up, dial it down with magnets and possibly really alleviate some of your symptoms, why not do that?

FOX: Just a personal thing. Next time they go into my brain, I want it to be -- to get it done. I don't want -- I don't want it to be -- I mean, we were joking about the book "When the Air Hits Your Brain." I don't want any air to hit my brain too many times.

I want it -- if there's something that they can do in there that will be cured or restored or help progression, any kind of much more fundamental way than just kind of mechanical stopgap, kind of a pacemaker ,which is what they have now -- that's just my personal preference.

I tend to lean against it.

GUPTA: Because you don't want to do another surgery unless there's greater promise?

FOX: Who wants brain surgery?

GUPTA: I'm a brain surgeon, so I --


FOX: Yes, brain surgeons love it.


GUPTA: But -- and so, yes, actually, there's -- maybe something will come through the pipeline that changes the picture. But, for now, I'm perfectly -- I can -- if I look back at the last 20 years you told me that this is where I would be 20 years from now after my diagnosis, I would have -- I would have taken this in a heartbeat.

I'm very -- I'm very happy with my life and very happy what I'm able to do.


GUPTA: You know, a few years ago, many people, including Michael, were hopeful that stem cells were going to be one of those options.


GUPTA: Why don't you talk about the stem cells as much anymore?



GUPTA: Ten years ago, Michael J. Fox started the foundation that now has his name to find a cure for Parkinson's. The foundation is now embarking on a major research project. They're looking for biomarkers for Parkinson's.


GUPTA: You know, it's interesting, because a biomarker is some sort of signal that the disease gives off, whether it's a protein or something in the body. It can serve a few different purposes.

Perhaps, like in the case of Alzheimer's, it can give you some early clue that someone either has the disease, maybe doesn't have symptoms yet, or is going to develop the disease. But it may give you some more insight into the disease itself.

FOX: A starting point -- it gives you a starting point.

If you want to track the progression of disease in a patient, now, you have to wait until he's symptomatic. But if you have a biomarker, you can -- you can track that from its earlier stages. You can say, what is going to be the trigger here.

GUPTA: And you talked a lot about this. Stem cells is something that still comes up. Why don't you talk about stem cells as much anymore?

FOX: Well, there's an urgency at the moment with the vote coming up in 2006.

I mean, the simple fact is that patients have the right to insist that federal funders and industry pursue anything that's likely to find an answer, to find a cure, you know? Cures don't fall out of the sky. They don't -- I mean, we have to go up and get them. And we just assume -- look, I think I always assumed there was a department of cures, that there was a minister of cures, a secretary of cures. But there isn't. It's us.


GUPTA: Such an important point. The secretary of cures he's talking about there. So many unknowns to the disease and how close are we to finding some of the answers?

Well, joining me now are two of the leaders in treating and research in Parkinson's disease: Dr. Walter Koroshetz, he's deputy director of the National Institute of Neurological Disorders and Stroke; and Dr. Bernard Ravina, associate chief of neurology at the University of Rochester. He's also a researcher with the Michael J. Fox Foundation.

Thanks for joining us.



GUPTA: He's doing well. You know, he really had a lot to say, obviously. But he did point out as well that there are so many unknowns. We don't know what causes this. The treatment for this hasn't changed a lot over the last several years. And at one point, he says, you know, just diagnosing him at such a young age, he wasn't sure he had Parkinson's disease.

Dr. Ravina, is that part of the reason that makes it so difficult to make progress here?

DR. BERNARD RAVINA, NEUROLOGIST, MICHAEL J. FOX FOUNDATION: It's true. There are multiple factors that may contribute to causing Parkinson's disease, and certainly in people who have early onset or young onset Parkinson's disease, it can be much more difficult to make a diagnosis because there are several other diseases that maybe suspected diseases or that you need to rule out first.

DR. WALTER KOROSHETZ, NATL. INST. OF NEUROLOGICAL DISORDERS: The distinguishing features to Parkinson's disease, I think the one -- the one that is the most distinguishing is that the patients respond to the medications in the early stage, and where many of the diseases are not responsive. So, this ability to respond to dopamine agonist is usually the cut point that makes you feel certain that someone has Parkinson's.

GUPTA: And he says he clearly responds to it, he clearly has benefit from taking the dopamine, which is -- which is what is deficient in the brain in some of the Parkinson's.


GUPTA: He talked a fair amount and obviously the foundation is very interested in biomarkers. First of all, tell us a little bit about what biomarkers are and why is this so important as we move forward?

RAVINA: Sure. Well, biomarkers are a characteristic or something that you can measure that tells you about the underlying disease process. So, not the symptoms, but what's causing the symptoms.

A good example is being able to measure blood sugar and diabetes. It helps you make the diagnosis and it also helps figure out if people are responding to the treatment.

In Parkinson's disease, we really don't have biomarkers that tell us what the underlying disease is doing in the brain. And it's a little bit more challenging because the measures that we're interested in are in the brain. So, it's not necessarily quite as simple as getting a blood test.

KOROSHETZ: In my mind, the biomarker significance is a measure that you can target with a drug or a therapy that increases the probability that you're going to respond to that therapy.

GUPTA: Five-year study, $40 million, several countries around the world?

RAVINA: That's right. I mean, this is -- this is one of the first large-scale international efforts to develop biomarkers that will tell us about the progression of Parkinson's.

GUPTA: Right.

RAVINA: And as Walter was saying, exactly the point, the goal here is to be able to use these biomarkers to help develop drugs that will slow the progression.

GUPTA: Stem cells was something that Michael J. Fox talked -- used to talk a lot about. He doesn't talk as much about it. Why not? Is there -- is there less promise? There was a lot of enthusiasm, Dr. Ravina.

RAVINA: Well, I don't know there's less promise. Certainly, it's a controversial issue. But I think what's key in Parkinson's is that we pursue multiple different avenues to treatments. Stem cells may work, but there are also other ways we can go about addressing the progression.

KOROSHETZ: I think the key thing to know is that the genetics has really opened the door because it isolated a defect in the protein called synuclein in a particular family that got Parkinson's. And that opened the door because what we found after that was that everyone with Parkinson's has this synuclein problem. And it occurs in the brain and in the nerves way before you get the symptoms.

So, now, you know, we know kind of what we might be able to go after to get a treatment.

GUPTA: A little forerunner --


GUPTA: -- gives you a little prediction. I think we can all agree on this. I mean, he is -- he is the eternal optimist.


GUPTA: I mean, in the book, "Always Looking Up, he does call himself an eternal optimist.

And when we return, he's going to explain why he also calls Parkinson's disease a gift. Stay with us.



GUPTA: Michael J. Fox calls himself an incurable optimist. And he called Parkinson's a gift -- a gift that keeps on taking, as he put it.


GUPTA: What keeps you so optimistic?

FOX: It's like being in the moment. It's just like there's no more important moment than right now. And I think, you know, I say to my wife sometimes, if you -- if you get caught up in the worst-case scenario and it -- and it doesn't happen, you've wasted your time. And if you are caught up in the worst-case scenario and it does happen, you've lived it twice.

You know, there's no -- there's no -- it's OK to be prepared and to be informed and to know what the future may bring, but it's also important to celebrate right now.

I golf, and I'm a terrible golfer. And I started golfing in my 40s with Parkinson's. So, if that isn't optimism, I don't know what is.

But I just do what I want to do. And I just work with what I show up with that day. And -- but that's me. And again, I'm very lucky in a lot of ways.

GUPTA: What's the legacy of the foundation going to be?

FOX: Well, hopefully, we'll accomplish our mission and in some way, facilitate a solution to this -- to this puzzle.




FOX: We know you're a big athlete and runner. So if you run the marathon, and I urge you to, run for Team Fox.


GUPTA: You can see there, Michael was recruiting me to join Team Fox. You know, he joins athletes all around the country by cheering them on, helping him find a cure to Parkinson's disease. He calls himself chief cheerleader of the foundation.

A lot of the information today was discussed. And we want to put it in one place for you to make it easy for you to get involved. You can go to to find links, to learn more about Parkinson's, to sign up for the latest clinical trials, or to simply to make a donation.

I'm Dr. Sanjay Gupta. More news on CNN starts right now.