Transcript: Michael J. Fox

michael j fox, katie couric, stem cells, parkinson's

Katie Couric: How are you?

Michael J. Fox: I'm fine, thank you.

KC: You've been very busy these days. You've been campaigning for Claire McCaskell in Missouri, you have ads out for the Wisconsin governor's race. Tell me why you've decided to do this.

MF: It's a long story. It goes back to 2000 when we first became aware of the potential of this science. I remember in 2000, I wrote a letter to then Governor Bush asking him to come through on his promise of compassion when he got to the office. And then he did limited stem cell in 2001…This summer when then president vetoed the HRA10, which is the legislation (for) stem cell research, with one veto of his presidency chose to veto that, it really stung the hearts of a lot of people counting on this. I knew I'd be involved in 2006

KC: When you did the campaign ad for Claire McCaskill...I've interviewed you on a number of occasions. Tell us what you were experiencing that day and what we're seeing as a result?

MF: Well, on any given day I have a thousand different things I can feel. I go through a million cycles. For example, right now this is a dearth of medication, not by design. I just take it and kicks in when it kicks in. Sometimes it kicks in too hard and then you get what you call dyskinesia, which is that rocking motion.

KC: When you go from side to side… and that's actually caused by the medication?

MF: That's caused by the medication. What happens is when you I'm 15 years out from diagnosis, one of the problems with medication, one of the reasons they are looking for cures particularly for Parkinson's is that the medication only has an efficacy that lasts so long and then at a certain point it ceases to, or it works with horrible side effects, which is the dyskinesia that you see. But on any given day, I can't design where I'm going to be at any given time. You just take the medication and hope for the best. If it's humid that day, if you get stressed that day, if you eat the wrong thing, if you have too much protein, it doesn't kick in. It's just part of living with this. It's funny the notion that you could calculate it for effect. People with Parkinson's out there, we're just kind of go...would that we could.

KC: In fact, Rush Limbaugh suggested you had failed to take your medication intentionally so when you did that ad you'd be more symptomatic and therefore, more sympathetic.

MF: The irony of it is, I was too medicated …The thing about being symptomatic is it's not comfortable. Nobody wants to be symptomatic. It's like you want to hit yourself with a hammer, you know, you want at all times to be as comfortable as you can be. And at this point now, if I didn't take medication I wouldn't be able to speak. I'd have a mask face and I wouldn't be able to speak and I'd lock up and freeze and not be able to move. So there's no time I'm not medicated. It's just a matter of titrating the medication to make sure it works as best it can. It's constant throughout the day.. I'm saying, well, I'm going to do something at 2 o'clock so from about ten o'clock on it's all towards getting to where I need to be at 2. It's the kind of stuff that people with Parkinson's live with everyday.

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Couric & Co. Blog: My Interview With Michael J. Fox
KC: Could you have waited to do that ad when you had less dyskinesia, for example?

MF: Well, when do you know that's going to be? You don't know when that's going to be….Funny, my mother was visiting that day, was in the backroom and she was saying throughout the filming of it -- and she was talking to my friends back there-- and she was saying "he's trying so hard to be still" and so she was the one actually when the comments were made, she was the only who was really angry and she said "I can't even see straight." I said 'Mom, just relax, it's okay, don't worry about it. But, it's just not that simple. That's why we're doing this. Not only people with Parkinson's. People who have spinal cord injuries. People who have the ticking clock of ALS, where they waste away, kids who are born with juvenile diabetes, I mean, potentially there's answers for those people and we're not interested in being exhibitionists with our symptoms or asking for pity or anything else. We're just resolved to get moving with this science. It's been a long time. It's not a time neutral observation. It's not something we can sit back and abstractly talk about. While people are talking about it, there are people attached to this issue, which is one of the reasons I did this. It's not necessarily the most comfortable thing for me to do and necessarily what I want to be doing. I've got 4 kids. I like to be spending time with them, but if it takes seeing a face that people recognize and say 'hey, I know that guy,' maybe they'll realize that they know other people. There's 100 million Americans that are either touched by an incurable illness, or know somebody who has incurable illness, or love somebody who has incurable illness. There's 100 million Americans and most of the American population -- 70 percent -- favor this research because they know what it means. But what happens is you get to an election time and things fall away. And what I hoped was by being that guy that people would say, 'Hey, I know that guy,' that we'd 14 days out from an election, be talking about stem cells. And we are. And I'm greatly gratified. And if that means taking a beating from that faction of the media, you know, that's fine. If bringing the message means the messenger gets roughed up a little bit, I'm happy to be that guy.

KC: What was your reaction when you saw Rush Limbaugh pretty much imitating you on his radio show.

MF: I didn't see it.

KC: You haven't seen it?

MF: No, I heard about it. You know, it's one of those things I heard about. My first thought was no, are you kidding me? And then I thought, well, you know I knew there'd be a swift reaction from some reporters and I knew there'd be that celebrity tag, which always kills me because the people who throw that celebrity tag around are themselves such huge celebrities and incredibly well paid celebrities, and you know, really have no more God-given right to have a platform than I do or any American does. We all have a right to speak up and say what we think is right and we all have a right to fight for things that we believe in, and I believe that science should move forward in this country. Science is a big part of the American story, and we need to start writing a new chapter. We've sat on our hands for years and ignored some really critical science, and I just think it's time we had a conversation about it and said, 'What are the implications of this?' What kind of faith do we have in our scientists? Why are we not trusting them? Why are we not trusting our own morality as a nation, our own sense of ethics, to oversee this, to do the right thing (by it?) and to move forward and help people.

KC: Rush Limbaugh, I contacted him because I wanted to fairly represent what he was saying because he believes that that clip was played and his real issues were not represented. So he told me, I called Rush Limbaugh and he told me, "I believe Democrats have a long history of using victims of various things as political spokespeople because they believe they are untouchable, infallible. They are immune from criticism". He went on to say "Michael J Fox is stumping for Democrats in the political arena and is, therefore, open to analysis and criticism as we all are."

MF: Well, first thing, he used the word victim, and in another occasion, I heard him use the word "pitiable. And I don't understand, nobody in this position wants pity. We don't want pity. I could give a damn about Rush Limbaugh's pity or anyone else's pity. I'm not a victim. I'm someone who's in this situation. I'm in this situation with millions of other Americans, whether it's like I said, for Parkinson's, or Alzheimer's, or ALS, or diabetes or spinal cord injury or what have you. And we have a right, if there's answers out there, to pursue those answers with the full support of our politicians. And so I don't need anyone's permission to do that. As far as democratic politics go, you know it's kind of funny, because the argument that I heard from that quarter, was first, that I was manipulating it, that I was a con-man essentially, and I didn't have the symptoms and was putting them on, so I was perpetrating fraud. And when he backed off then, then it became that I was a dupe of the, a shill for the Democrats, that I was being exploited. And the truth is, I've been involved with this issue since 2000. And in the meantime, separate and apart from my political involvement, I've started a foundation that's raised $85 million for research and is the second leading fundraiser for Parkinson's research after the federal government. And um, you know, I'm not a Johnny-come-lately. No one plucked me off the apple cart to come and do this. I mean, I believe in this cause. I've put a lot of my life and energy into it, and we're serious about it.

KC: You have said before, this is a bi-partisan problem that requires a bi-partisan solution.

MF: Disease is a non-partisan problem that requires a bi-partisan solution.

KC: Would you support a Republican candidate?

MF: I have. Arlen Specter is my guy. I've campaigned for Arlen specter. He's been a fantastic champion of stem cell research. I've spoken alongside Mike Castle, who's a Republican Congressman. Absolutely. This is not about red states and blue states. This is not about Democrats and Republicans. This is about claiming our place as the scientific leader in scientific research and moving forward and helping our citizens. That's all it. It's that simple.