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April 17, 2009
THE MODERATOR: This Pro-Am has really taken off and become something very successful, and one of the purposes of it is to run a great golf tournament with all of these incredible players, somebody mentioned yesterday, over 700 PGA TOUR events have been won by the players, but the other part of it is raise money for charities. And with us today are some people that have had a tremendous impact on certain disease, and unfortunately my mom had Parkinson's for a long time and left us a couple of years ago, but Michael J. Fox, who is just a ball of energy and so focused and committed and shows so much courage. It is just amazing what he and his team have done in this battle, and over the last five or six years, about $140 million have been raised or put to work in funding research that relates to Parkinson's, and Tim Simpson, a great PGA player with his own battle who has overcome some of these challenges and he's doing a great job here and Dr. Hauser from USF is very involved in it. So I'm going to turn it over to them because that's who you want to talk to today.
Having Michael to play in this golf tournament is just such a pleasure and is so much fun. We played yesterday and he has to give me two shots a side. I don't know who is talking first, but Michael, I'll turn it over to you.
MICHAEL J. FOX: I'm just happy to be here. Make no mistake, I'm a horrible golfer. It's funny, I have a book out right now about optimistic, and there's no greater indication of optimism than the fact that I took up golf in my 40s with Parkinson's, so got me behind the 8-ball right away.
But I really enjoy getting out and playing and just thrilled, Chris and Andy are been so supportive of us, our foundation and the work that we do, and I'm honored to be here and to be part of this philanthropic effort and be part of this tournament.
I'm thrilled to be out with Tim. I have great admiration for him, and, in fact, I don't know how much you want to get into your thing, but in order to be able to continue to play golf, he had a procedure called a DBS, deep brain stimulation, which you don't -- it's not for the faint of heart, and it was a big risk he took and it really paid off. He and the golf world benefited from it.
Other than that, I'd like to say that I'm really pleased to be here. I just hope I stay out of his way today, and if I can get to the green before I put the ball in my pocket, I'll be happy. (Laughter).
Q. Can you tell us a little bit about the treatment?
DR. HAUSER: Sure. Although Parkinson's disease is a progressive neurologic disorder, there have been great advances over just the last can decade. Many of these new medications help us control the symptoms of Parkinson's disease and also our understanding of the disease, where it starts in the body and brain and how it progresses and the additional symptoms that we did not recognize for many years are now coming to the fore. I think for the future we are working on research particularly trying to diagnose the disease earlier, before people get tremors and trying to come up with medications to slow progression of disease.
In addition for people who already have the disease, I think you'll hear more about deep brain stimulation, we did the first deep brain stimulation in the United States here at Tampa General Hospital in the United States. Ultimately we want a cure, and that's going to come from understanding the process of the disease, using genes that we know that some people have causing Parkinson's, and putting that into animals in a laboratory and understanding the process of how the genes cause the disease and coming up with medications to stop, and that's an important avenue of research.
Another important avenue is stem cells; can we create cells in a laboratory that can be implanted to replace those lost cells with. Those few words, and that's where we are at. I think the future looks very, very bright. But smart investigators cannot do it by themselves. Funding is so critical to research, and it's so important that I thank the funding sources, especially the Michael J. Fox Foundation, who have been outstanding in raising funds and providing research; so thank you personally to Michael J. Fox and to the Foundation, it's really been excellent.
One more thing. They don't just raise funds. They have a very targeted approach with regard to what kinds of projects should be funded. So they take the lead in identifying where does the research need to be in conjunction with leading investigators around the world, so just outstanding.
We still have a ways to go and want to improve the long-term outcome with patients with Parkinson's and other movement disorders. But Tim and Michael are just great examples of people who have these disorders that can live full and rewarding lives, and in part due to the patients and doctors and advances we have made over the last few years, so thank you to both of you. You are really such an inspiration.
Q. Along those lines, I would like to ask Michael, and also Tim to answer, how special of a reward is it to be that kind of example to be not only a platform for these disease, but actively show people that you can manage and live with it as you fight it and as you look for a cure?
MICHAEL J. FOX: You know, first I want to acknowledge my family and how much they mean to me, and you can be a little fearless when you have the love of your family behind and you know they are going to love you know matter what happens. That's great.
One of the things when I first revealed that I was diagnosed in '91, but I was really moved by the people that me mistaken for being drunk or could not get their change at the counter and some say, well, that's what Michael Fox had. And at that moment, it occurred to me what a blessing it was and how lucky I was to be in that position to be able to help and beyond just raising funds and that kind of thing, but to actually show people, not just the people that had Parkinson's, they already knew, but you can be proactive. It's one thing you don't have a choice on right now, but we are working on -- you don't have a choice that you have Parkinson's, but around that non-choice there are thousands of other choices you still have. You are not defined by that. So that means that you can go out and be a bad golfer if you want. It's okay to be shaky. You can be shaky and still be steady.
TIM SIMPSON: I would like to clarify, I don't have Parkinson's, I have a central tremor, kind of a cousin to it. But I feel very blessed.
I feel like I've been given a second chance through DBS surgery. It's something that I talked to anybody and everybody; I am not -- what's the term I want to use, hesitant. I'll show you my little device here. It's an implant. I call it my little deck of cards. It's an electronic implant here with a battery in it, and I have a wire that goes up my neck and joins here and comes across, and you see me, I have a little padding, bump here and that's a plastic cap that covers the hole. The probe goes down into my brain and sends an electronic stimulation. I've been given a second chance. I'm playing well.
I still have my issues a little bit with the putter from time to time, but the bottom line is, I'm just trying to be courageous, to be optimistic like Michael and just play as hard as I can. I know the clock is ticking on my career. I'm not getting any younger, and I know that possibly I'm going to get worse. But I had two seconds last year and I'm in the thick of it nearly every tournament this year.
And thank God that I've been given another chance and that I'm able to help people. I don't know how people contact me. I don't know how they get my cell number, but it will ring. There's a gentleman here that will be here this year that comes every year to see me and he tells me, "You changed my life. I saw a show on the GOLF CHANNEL and I had the surgery that you had."
And I tell him: "No, it wasn't me; I sent the message."
But I'm honored to play with Michael. We are going to have a great time, and it doesn't matter whether he plays good or bad. He's going to be an inspiration to me and Chip Beck and millions of others and we are going to have fun, and that's what it's about, and I get to make a new friend.
MICHAEL J. FOX: You already have.
Q. Doctor, let me just ask a medical question, forgive me if this sounds ignorant, but I think there's some confusion about Parkinson's in the sense that we have heard of Parkinson's disease and Parkinson's syndrome, could you give us a layman's primer on what the disease is?
DR. HAUSER: Parkinson's syndrome, or Parkinsonism, is a big umbrella term that refers to all of the disorders that cause slowness, stiffness, tremor or balance problems. One of those is Parkinson's disease, and we recognize that by slowness, stiffness, tremor, asymmetry usually starts on one side and it tends to respond to dopamine medication.
A lot of the other kind of Parkinsonisms don't really respond to medications we have today. We haven't got into it much in our discussions here, but it's a whole new category that we are not treating well. Those people are really in need and we really need a lot of research to try to figure out, how can we treat them better and can we identify those disorders earlier and can we stop their progression.
Many different things can cause Parkinsonism. There are some degenerative disorders, meaning people lose their neurons over time, and sometimes people the water containing spaces in the brain can expand, and all of those things can cause slowness and tremors. So when a person goes to the doctor, the doctor does need to think about what are the possible causes and figure out which one it is to figure out what is the appropriate treatment.
MICHAEL J. FOX: I always say: Everybody gets their own version of the disease, and it's like you can have five Parkies at home, and we'll all be on different medications, different timing, some will say, 'I swear by this one' and somebody else will say, 'That makes me want to throw my kids out the window.' It all depends on how you respond to it.
So that's why, too, you can see, for example, someone, me, won't get out of your face and you'll see me a lot and you'll see me on one program and I'll be steady; and another one I'll be wobbly, a side effect of the disease, or shaky and holding, which is the pure symptom profile. But I never know, you know, what I'm going to be dealing with on any given day. It's a great excuse for the golf course.
And I love it when people say, "Stay still over the ball." (Laughter) That's my favorite line. But thanks for asking that, because it is very different, and it's confusing. It's confusing to people, they say: "Well, I saw you yesterday and you were fine and today you're not, are you getting worse?" And it's like, no, tomorrow is another day.
Q. What do you hope to accomplish this weekend in terms of getting the word out? You've made a lot of public appearances and you're on TV shows, and the fans at this tournament are used to interacting with celebrities. What do you plan to do?
MICHAEL J. FOX: I don't have a specific goal in wanting to achieve anything, but just become aware that by getting out and living a full life and doing things like this that perhaps provide an example that you can carry on with your life and get involved and do the things that you like to do.
And like I said, for me it's a great privilege to be in that position.
Q. Tim, if I can ask you another question, obviously your comeback has been amazing for golf. Has it surprised you the amount of success you've had just in the last two years?
TIM SIMPSON: That's very kind of you. I'm a pretty determined guy, and I guess I would say I'm blessed and I'm thankful. Does it surprise me? No, because I felt like probably like Michael feels inside, all of the talent is still there. Michael J. Fox is here; Tim Simpson is here. It's just I had something that I had no control over, and for a professional athlete, which most of us are Type A personalities, everything is answered, like your short game is bad, well, you go practice for six or eight hours and do what it takes.
But it was like, I just can't stop this hand from shaking. But you know this little bump on my head, it's fantastic for an excuse with my wife, because Leigh Anne will say: "You know, I told you to" -- (laughter) -- and I say, "I've got a hole in my head, what do you expect?" (Laughter) but no, you're very kind in your compliment.
I feel like I was given a second chance to help others, and I think if I can hang on and win, then I will have come full circle from Top-10 player to totally out of the game to back and playing great to winning.
Q. I hate to say summarize, because I know it was an incredible journey in 1991 to 1995 to 2009, but the dark hours, not knowing whether you would make it through what you were going through and where you are now, can you put a synopsis on that spectrum for us, that journey that's been so rewarding?
TIM SIMPSON: That's a tough one. I can remember I won Walt Disney back-to-back in '89 and '90, but by '92, '93 I was shaking uncontrollably and aching everywhere. And I missed the cut by I don't know how many, and I was driving from Orlando back to Georgia where I live and it was like, it just overwhelmed me. I just pulled over on the side of 75 and just started bawling.
And I went through the, why me? What have I done, God? Why do I have what doctors don't know anything about? But then I realize, in the many interviews that I've done since my comeback and everything, people invariably will say: How did you cope with it all? And I went through a terrible divorce in the middle of all of this after losing my career.
And my answer is, every day God puts somebody in my life in front of me that is a whole lot worse off than me, and it was a slap in the face. It said: Tim, you've been so blessed, don't you dare be ungrateful. So I'm just grateful for every day.
Obviously I had no control over my left hand, and my tremor is a progressional tremor and we adjust my DBS device, they put a magnet with a little doily-cord with like a little Palm Pilot; and the doctor asked me to hold a coffee cup, a Styrofoam cup, and I get right here and it will just start shaking and she goes boop-boop-boop, and I feel an electronic surge go through my left arm that stops it.
It's truly amazing. I've had my surgery film. I hired a crew to film it, and I remember, I told Dr. Smith before the surgery, what brought it out was the golf club. And I said: My son had a little putter that somebody had given him when he was born with his name engraved, and I said, "Whatever you have to do to sanitize this, I want it to go in the operating room with me," because we want to make sure we get the tremor to come out where you can get the probe in the proper place. So you had to be awake for the surgery except, at the end where they implanted it and sowed me up.
So the part came seven, eight hours, where he said, "Tim, I'm going to put the putter in your hands." And I'm laying down and I have the head thing that's anaesthetized to the operating table and looking through a mask like Hannibal Lecter, and he put the putter in my hand. And for reasons we can't explain, it didn't shake. Well, he had just had had hip replacement surgery and I said very audibly: "Doc, let me see your cane."
So he put the cane in my hand and here it went, and he turned and I could see his head turn to the film crew and he said, "Do y'all have had on film?" And they said yes, sir. He turned to his assistant and said. "Are you ready to activate him?" And he said, I am and he said. "Cut it on," and my hand was shaking and I felt the electronic stimulation go down my left leg and out my Achilles tendon down my leg and through my left arm and the cane stopped dead. And it was just -- that's when in the article, I tend to say all hell broke loose in the operating room. Because they knew they had hit a grand slam.
And they never told me until the next day in intensive care, had they been one millimeter off, the surgery would have been a failure. But it worked. And I was in intensive care and they had given me morphine, and all that I told my wife: Go to the car and get a wedge out of the car and bring it. And I've got all of these wires and I'm holding this wedge and it's not shaking and I said, that's the medicine.
So anyway we go home a day and a half two days later, I walk in the house, grab one of my clubs sitting in den, wasn't shaking. Still got to be the medicine.
So I couldn't drive because they had to sedate me at the end of surgery and they don't want you driving. So my wife runs down to the grocery store, and I immediately jump in my car and drive; and I'm all taped up like the Mummy and I drive to the clubhouse, jump on a cart and drive down to the practice tee. And I jump out some balls and I hit a shot from about 15 yards, the first ball I hit, wow, nothing there. I hit it, knocked it about a foot from the hole. Second ball, right in the middle of the hole, and my hand wasn't shaking at all. And that's when I lost it. That's what I just cried my eyes out and said, you know, here a 15-year struggle and hoping and praying that they could come up with something that would help me, just like Michael, I'm sure, goes through the same thing, they were able to help me. And I will pray every day for the rest of my life that they can cure Parkinson's.
Q. First off, can you top that story? And second, he talked about going through the "why me" phase; did you ever go through that, and how did you come out of it?
MICHAEL J. FOX: I didn't go through a "why me" phase as much. I certainly was -- I remember, I didn't have any idea where my head was at and how big my ego was, and I remember when the doctors told me when I was just diagnosed and my first thought was: You don't know who I am, I'm Michael Fox, the guy on TV, this is not happening. And it was that kind of reaction. It wasn't why me; it was, "it can't be me." I just couldn't accept it for about a year.
And then the more I started to accept it, and I got a little bit from what Tim was saying, too. Once you accept it, doesn't mean you resign to it. It means that you acknowledge what it is and it's a fact of your life and not going anywhere and your hand is shaking and nothing you can do about it. But once you accept it, then you can make decisions about what you can do going forward, and that's the hardest part. For me it wasn't the why me; it was that it can't be me, and then finally, no, it is me. Then you move on.
In terms of the surgery story I had an operation two years ago, I had a thalamotomy, sort of getting the implant, but they go and put a lesion; and one thing I wanted to underscore, how when he said a millimeter away from disaster. When I was supposed to have my surgery, I said to the brain surgeon, I said: "So settle an argument for me. Rocket scientist, brain surgeon, which one is the paragon of brilliance; which is smarter, brain surgeon or a rocket scientist?" And he said brain surgeon and I said why? And he said: "No margin for error." And I thought about it, yeah, I've seen Apollo 13, and but if you screw up in the brain, a little bit, that's it, you can't talk, you can't see. For a professional athlete to take that risk and to have it pay off is a remarkable thing, just really -- I'm really humbled to be next to him.
Q. Can you talk about how treatment affects patients differently, and have you noticed any treatment that you received that helps you the most?
MICHAEL J. FOX: Well, whatever I'm doing right now is what I think is the gold standard, or else I would be doing something different. For me it's a matter of titrating medication and get the right combinations. It always changing, because what happens, in your brain, there's a certain amount of dopamine that's always in existence and that fluctuates for a certain extent; so when I take medication, I don't know how that's going to match up with what's already there, so it's a guessing game every day.
So that's basically what I'm doing. I'm taking a series of drugs that to this point are working for me now, in fact, I have to take some in a couple minutes because I'm going to see off soon. But it's always changing.
Q. Do you have the implant?
MICHAEL J. FOX: I have, but because I said the next time they go to my brain, I want them to go in and fix it. I don't have the same -- the reason I had the thalamotomy was for the exact reason -- I wanted to do a couple more years and extend my career.
So it might not have been something I might have done had I been a civilian or some other line of work, but because like Tim, I work in the public arena, I took that choice and had that operation earlier. But now I don't have that much pressure. My kids don't mind if I'm shaky, and my wife has bigger problems with me than just my shakiness.
Q. So would it make it more difficult to do the DBS on you because of the earlier surgery?
MICHAEL J. FOX: Maybe. Like I said, to drill another hole and go in again -- there's no guarantees that it's going to work. So that's the point of it. It's a great thing for people when it works, I think -- because like I said, I don't have the pressing need to be still. For me, it's not a matter of my ability to do my job; it's a matter of my vanity, and my vanity I threw away a long time ago. I'm not a poster on any teenager's wall anymore, and I don't worry about how I like.
So I'm doing fine right now, and when something like cell implantation comes along, I'll be in line.
TIM SIMPSON: I would just like to say as a new friend of Michael and his partner this week, this is not about how Michael plays the next to days. Michael is out of his element. He's a superstar in what he does. I would just like to hope that y'all realize what an incredible heart and courageous human being he is, and realize that hopefully we can benefit his foundation, as long as Dr. Hauser's work and all of the other great neurologists, it's about fun and entertainment and you'll bring that out of it. Here is a guy with a heart bigger than the State of Florida doing something unthinkable with his disease, and he's going to help others, as well as himself by doing it.
End of FastScripts