Michael J. Fox: How to Keep Going When Life Gives You Speed Bumps

 

Michael J Fox

I’m Alan Alda, and this is Clear and Vivid, conversations about connecting and communicating.

Michael:                                               I found that I was part of a community that I hadn’t been before. I’d been isolated. I told me family, I told loved ones, and I told some people I worked with,And I started to notice more people on the street, like the old lady that before was annoying when she took so long to get into the elevator and push the button. I now recognized her as having symptoms of Parkinson’s and related and said I’m part of this community. AndI accept it. Now, I’m not resigned to live with that, I can endeavor to change it.

INTRO

Alan:                            00:00:03          Michael, I’m so glad to be talking to you today

Alan:                            00:00:23          I’ve been looking forward to this, because of all the conversations I’ve had on this show, this is probably going to be the most personal for me, because you and I are now on the same journey together. I’m very anxious to hear from you, your end of it, what you’ve gone through. How did you first find out you had Parkinson’s?

Michael:                       00:01:09          I was in Florida doing a movie and I woke up one morning, and I had a twitch in my pinky finger. I’d been partying a lot then. Woody Harrelson was on the movie, which is never a good thing, in terms of the behavior, so we were kind of crazy. And, so I thought this twitching had something to do with the party the night before. Then I realized that it wouldn’t stop and it just continued. A couple days after, my shoulder, and then my-

Alan:                            00:01:40          A couple of days later, it was not just your pinky, it was your shoulder too?

Michael:                       00:01:43          My shoulder. Then over time, a couple months went by, and I didn’t take it seriously. I thought it was some kind of sports injury or something.Then I was running one day at Martha’s Vineyard, and Tracy saw me running, and I was taking longer to come back from my run than I normally do.She came up, she said, “You know your left arm isn’t moving when you run.”

Alan:                            00:02:08          “Your left arm isn’t moving.” You know, my wife Arlene said a similar thing to me. I don’t run, but when I was walking, she’d say, “You’re not swinging your arms. Swing your arms.” And I didn’t know that was a symptom. I just thought I was getting older and not swinging my arms or something. I didn’t know what it was. So, what happened after that?

Michael:                       00:02:31          So I had a [inaudible 00:02:34]. First I went to a sports medicine doctor and he quickly realized that it was not his area, that I needed a neurologist. AndI went to a neurologist and did a series of tests. And this is one of the things we’ll about in terms of the Foundation’s work in predicting, and pre diagnosing Parkinson’s, which is what our goal is.

Alan:                            00:02:53          I’m so glad to hear that.

Michael:                       00:02:55          Because by the time this guy ran me through a battery of tests which were kind of like sobriety tests, I remember just touching my nose, and clicking my fingers, one foot in front of the other, I was deemed not ready to drive.

Alan:                            00:03:10          Really?

Michael:                       00:03:11          I’d in that sense that the driving test analogy, I failed it.

Alan:                            00:03:16          Oh, oh, I see what you mean. Yeah, yeah, if it had been a sobriety test you would have failed.

Michael:                       00:03:20          He would have taken my keys. But as it was he just sat me down and it was clearly kind of [crosstalk 00:03:25]-

Alan:                            00:03:25          And it was just from that physical examination he knew you had Parkinson’s?

Michael:                      00:03:28          And other …

Alan:                            00:03:31          Did he do a scan?

Michael:                      00:03:32          No, he didn’t do a scan.

Alan:                            00:03:34          See, here’s what was so weird about my thing. First, Arlene told me that I wasn’t swinging my arms, but I didn’t know that was a problem. But I was starting to once in a while act out my dreams.

Michael:                       00:03:49          Yeah. That’s-

Alan:                            00:03:49          And I didn’t know that was a symptom either.

Michael:                       00:03:52          No, we’ll get to that.

Alan:                            00:03:55          I would be having a dream I was being attacked by somebody, and I threw a sack of potatoes at them. And in reality I was throwing a pillow at Arlene.

Michael:                       00:04:05          I did the same thing. Tracy lived in fear for a while that I was going to whack her in the night because I would have the same thing, that someone motion restricting my movement or holding onto my arms, or trying to overpower me in some way, and I would-

Alan:                            00:04:21          Isn’t it interesting that these dreams seem to be always involving an attack on us.

Michael:                       00:04:27          Well yeah, and the constriction, and the restriction, and a suppression.

Alan:                            00:04:31          So there must be something happening in the brain-

Michael:                       00:04:34          Yeah, it’s called Parkinson’s.

Alan:                            00:04:35          That’s coming out as a dream.

Michael:                       00:04:37          Yeah. It’s just your body, your mind expressing-

Alan:                            00:04:42          Yeah, so we sleep with a big pillow between us. I have a harder time reaching her if I’m fighting somebody off with my firsts.

Michael:                       00:04:50          Yeah. See, we do the same thing.

Alan:                            00:04:52          So, I read an article by Jane Brody in the New York Times in which she interviewed a couple of doctors who said they had a very high percentage of people who went through this sleep problem who turned out to have Parkinson’s. And I didn’t have any other signs at all. And I said to a neurologists, “I want to take a scan.” And he said, “Well, let me examine you.” And physically, unlike you, physically I had no symptoms that showed.

I got up out of a chair easily. I walked well. I didn’t swing my arms much, but that was a small thing. He took a scan, he still didn’t think so, he still didn’t think I had it. He took a scan then he called me a couple days later and he said, “Boy you really got it.”

Michael:                       00:05:38          Wow.

Alan:                            00:05:39          And it was a few months later that I got the first twitch in my thumb. And I wanted to tell people about it thenand decided not to because, tell people in public, because I wanted to encourage people to find out about early if they could. Before the symptoms show up.

Michael:                       00:06:00          Yeah, the thing about the symptoms showing up is that I was told that by the time my pinky twitched, they didn’t have imaging in the sense that they have it now, in 1991 when I was diagnoses. They had some imagining and I did some, but it was mostly to see if I had a stroke or something. I don’t think it was specific imaging for Parkinson’s.

Alan:                            00:06:22          But by the time your pinky twitched, what?

Michael:                      00:06:24          By the time my pinky twitched,somewhere close to 70 percent of the dopamine producing cells in my brain were already gone.

Alan:                            00:06:29          70 percent.

Michael:                       00:06:30          Yeah.

Alan:                            00:06:30          Wow.

 

MUSIC BRIDGE

 

Alan:                            00:24:45          When you first heard about it, what was your reaction? Did you said, “Oh, I got to get mobilized and do something?” Or did you fall apart?

Michael:                       00:25:01          Honestly, my first reaction was you’ve made a mistake. You’re not aware of who I am.

Alan:                            00:25:05          Denial.

Michael:                       00:25:06          Yeah. Denial and I responded, quite frankly, I responded by drinking too much. I responded by just going to bury it and just not deal with it. Because it’s the kind of thing where I had the pinky twitch and I had the sore shoulder and all that stuff, but that didn’t amount to a lot in terms of carrying on with my life.

At that point it wasn’t … I mean, it was stuff that no one would notice but me. And you’re basically told a truck is coming and it’s going to hit you at some point, but you don’t know where and you don’t know when. You can’t hear it coming. You can feel it’s vibrations subtly, but you know at some point it’s going to run you over be they don’t know a way to stop it.

And so, that takes some dealing with. And I luckily, my partner, my wife, who is just an amazing person. And, I credit her with a lot of my ability to deal with this. And, also shutting down my early attempts to deal with it in a non productive way, by drinking or by getting angry.

Alan:                            00:26:09          You got angry and you drank.

Michael:                       00:26:10          I got angry. Not specifically angry at Parkinson’s, but I got angry that this would befall me at this time

 

Alan:                                                    It’s scary when you first get a diagnosis.

Michael:                       00:11:22          The doctor said to me at the end of perfunctory examination, as he told me I had Parkinson’s, he said, “But, you have a good 10 years left of work.” Which was-

Alan:                            00:11:33          That was like-

Michael:                       00:11:34          Which sounded magnanimous at first.

Alan:                            00:11:35          Is that the good news or the bad news?

Michael:                       00:11:36          I mean, I was like, “Wow.” For me at that age, that was like 10 years left to live.

Alan:                            00:11:42          Yeah. Exactly.

Michael:                       00:11:44          It was astounding to me. And so I took it at face value. And I started to work like crazy and do all this stuff. And do stuff I might not have done otherwise. I don’t want to disparage anything I did. But, I didn’t make all the choices I that I would have-

Alan:                            00:12:00          But, all that time you were keeping it a secret, right?

Michael:                       00:12:03          I was keeping it secret. I kept it secret for seven years.

Alan:                            00:12:04          I kept it a secret for three and half year.

Alan:                            00:12:07          My, feeling after I finally made it public was tremendous relief.

Michael:                       00:12:11          Yeah. It was a great feeling. Well, because I found that I was part of a community that I hadn’t been before. I’d been isolated. I told me family, I told loved ones, and I told some people I worked with.

But it was such a great relief. I always joke that I told Barbara Walters and People magazine, in a time before social media. That was the way to get something out. Tell Barbara Walters and People magazine. Before you could twitter it. But it was an amazing experience. Because it was this outpouring at first of sympathy and pity and things like were really disturbing and hard to deal with.

Alan:                            00:13:00          Yeah.

Michael:                       00:13:01          And I would see people look me in the eye and say, “Are you okay?” And I’d see in their eyes their own fear reflected back at me.

Alan:                            00:13:07          Right. That phrase, “Are you okay?” I hear that. Somebody I haven’t seen since I made the announcement, “How are you?” You know, there’s something so deadly about that. How people communicate with us about it, it could be helpful to a lot of people who are Parkinson’s patients to think about the Parkinson’s guy is working on it.

Alan:                            00:13:43          ‘Cos If we have this sense of reality about it, and I think I’ve heard you talk about it, that you face the reality finally, “I got it. Now what can I do about it?”

Michael:                       00:13:56          It’s acceptance. Accepting doesn’t mean resignation. Acceptance doesn’t mean resignation.

Alan:                            00:14:03          Acceptance doesn’t mean resignation. It means-

Michael:                       00:14:03          No. You accept the reality of something, you accept the fact that this is a thing, and then it’s a thing. It’s not an amorphous blob of neurosis, and fear, and loathing in your head. It’s a tangible thing. So, now I accept it. Now, I’m not resigned to live with that, I can endeavor to change it.

Alan:                            00:14:24          What I realized pretty early on was I could hold back the progression of the disease if I took on a regimen of exercise-

Michael:                       00:14:38          That’s great.

Alan:                            00:14:39          That was really special to these problems.

Michael:                       00:14:42          We both box.

Alan:                            00:14:44          Yeah. Yeah. I love boxing. It’s not really boxing, I don’t get him.

Michael:                       00:14:49          Yeah. That’s [crosstalk 00:14:51].

Alan:                            00:14:52          I’ve always avoided that. But, I love the … And I march to Sousa music.

Michael:                       00:14:58          I do that in my head. When I walk down a hallway I’ll go [inaudible 00:15:01].

Alan:                            00:15:02          Yeah, yeah, yeah, yeah, yeah. I sing it, when I’m walking down the street I hum to myself and mark in time. It really helps. I make up my own version of Tai Chi. This morning I was doing vocal exercises. If I don’t vocalize I lose my voice completely. So, I vocalize twice a day. So I wouldn’t waste any time while I’m doing it, I also do little physical movements like I’m singing a big song. And I’m-

Michael:                       00:15:28          That’s great.

Alan:                            00:15:30          Everything you get … I think about it all day long. You must too.

Michael:                       00:15:35          I do and then I don’t. What I don’t do … What I think the key is, and I sense that you don’t do this either, because I think it’s deadly, is to project. Is to think about where it’s going. It’s okay to understand where it is today, but I don’t have to spend a whole lot of time where it’s going to be tomorrow.

I do the things, I do exercise or managing my meds correctly, or getting the correct amount of rest, or doing the things I need to do, but I don’t do them so tomorrow’s better, I do them so today is good.

Alan:                            00:16:05          Yeah. Me too. Me too.

Michael:                       00:27:31          At a certain point, that’s why you love the people that are around you, and the people you’re with, and the people that are on your side and the people that think like you do, and support you. Because not everybody can be expected to do that. So, you have to draw your strength where you can draw it from. And not expect the things [crosstalk 00:27:45].

 

Is this transition too abrupt? I’d like to at least trim it.

Alan:                            00:27:45          The difference between the person who says, “How are you?” And the way a loving wife can work with your, the Tracy does with you and the way Arlene does with me, that difference is enormous. Because Arlene is very frank with me and very matter of fact. “You’re not standing up straight.” “Oh yeah, thanks.”

Michael:                       00:28:04          That sounds like the Arlene I know. Yeah. Tracy’s the same way. She’ll say to me, and I’m kind of well-known for espousing optimism and being positive about everything, but I was kind of in danger of not listening to my own advice, and she said, “This is today. And tomorrow will be better.” And it’s just that simple.

Alan:                            00:29:47          Yeah. That idea of being in the present, which we practice as actors, we have to know how to be in these [crosstalk 00:29:55].

Michael:                       00:29:54          We have to be ready to react.

Alan:                            00:29:55          It’s really helpful in a situation like this. All I’m dealing with right now is getting the cuff of my shirt buttoned.

Michael:                       00:30:04          Exactly.

Alan:                            00:30:05          I’m not dealing with what this concern into, or what a sign it is that I’m not the way I used to me. I’m not thinking about the past or the future, I’m just thinking about the button right now.

Michael:                       00:30:14          Exactly. It’s awful funny to hear you say this because it’s just exactly what I feel.

Alan:                            00:30:20          I find it really helpful. That’s what I meant when I said it was a relief to just say, “I got it.” And let everybody else know. Because, it was kind of useless to pretend I didn’t have it, when the obvious ocular proof of it was leaking out through my twitching fingers.

Michael:                       00:30:38          I don’t [inaudible 00:30:39].

Alan:                            00:30:39          And every one and a while I see somebody’s look down at my hand and I think, “This is no secret to this person. What am I doing here?”

Michael:                       00:30:47          I think of that too with putting on a shoe. I don’t think that it takes five minutes to put a shoe on. I think that I got the shoe on.

Alan:                            00:30:56          That’s right, yeah. And, I also see no disgrace in finding ways to do it differently. For instance, I mean this is pedestrian, but its an example. I used to take the shirt off the hanger, put it on, and then button my sleeves with the sleeves on my wrist, and I had one hand to do it with because the other hand had the sleeve. Now, I leave it on the hanger, I button the cuffs before I ever try to put the shirt on, and I’ve two hands to work with.

And I said this to a friend who had Parkinson’s, and he says, “No, I don’t want to give him.” It’s not giving in, it’s adjusting.

Michael:                       00:31:45          I’m with you, whatever easier way there is to do thing. Whatever’s easiest and , not time efficient, not better to help me meet some other expectation, but just better for me, what’s more comfortable.

Like I asked … I mean, I’m lucky enough that I don’t have to wash shirts and press my own shirts, so when the lady who does that hangs them up, I ask that she just do one button on the shirt when it’s hanging because I don’t want to undo all the buttons before I take it off.

Alan:                            00:32:21          Yeah. I was just thinking of that yesterday as I was trying to unbutton the top button on the shirt that came back from the cleaners. And, I thought, I wonder if I should ask them not to button the top button, because that’s very hard to get open.

Michael:                       00:32:36          Yeah, it’s very hard to get. There’s always that little [crosstalk 00:32:39]-

Alan:                            00:32:39          I think I was doing what my friend said, I was saying, “I’m not going to give in. I’m going to learn how to get this top button done. It’s a tricky thing, you got to know when you’re making progress adjusting to it and when you’re holding back progress

MUSIC BRIDGE

 

Alan:                            00:16:39          When they told you you had 10 years to work as an actor, how wrong they were because you’re determined.

Michael:                       00:16:48          Well, and I also found out, we were talking about this earlier, I found another way to work. I found another way to express myself as an actor that didn’t rely on some of the facility I had before.

Alan:                            00:17:03          Yeah. Yeah. That’s … You know, all of us, if we hang on to what we had before I think we’re in trouble. If we were cute when we were 20 and we try to be cute when we’re 60, it’s not such a good idea.

Michael:                       00:17:16          I left high school in 11th grade and moved to California to become an actor. I did everything you’re not supposed to do, I’m the cautionary tale that isn’t cautionary because it turned out okay. But, I did everything you’re not supposed to do.

But, I went to my history teacher before I left school and I said I was leaving school, because he was someone I had a connection with. And he said, “Fox, you’re not going to be cute forever.” And I said-

Alan:                            00:17:40          He said that?

Michael:                       00:17:41          Yeah. And I didn’t know what to say to that, so I said, “Well maybe just long enough sir. Maybe just long enough.” It turns out we were both right.

Alan:                            00:17:49          Yeah. But, you can build from one thing to another. And that’s what you’ve done. I read some place you said, “I can play any character as long as he has a neurological disease.”

Michael:                       00:18:01          And what was fun about that, is an extension of that, outside of Parkinson’s it was fun to play a character with a disability who was an asshole.

Alan:                            00:18:12          Yeah. Yeah.

Michael:                       00:18:13          So many times with people with disabilities it’s a stereotype. Soft piano music plays and there’s a need for the narrative to make that person-

Alan:                            00:18:28          Sympathetic.

Michael:                       00:18:28          Vulnerable and sympathetic. And-

Alan:                            00:18:30          And there’s this feeling, “Oh, the poor suffering saint.”

Michael:                       00:18:32          Yeah. So, to play a guy who says, “I have this and I’m going to use it to manipulate people and I’m going to use it for my own ends.”

Alan:                            00:18:38          Yeah. It’s great.

Michael:                       00:18:39          [crosstalk 00:18:39].

Alan:                            00:18:39          It’s a human thing. You showed a human person there.

Michael:                       00:18:42          And the thing that I said to someone, when you play bad guys I think of the aviator, I loved [inaudible 00:18:52] you were so great in that.

Alan:                            00:18:42          Oh, that’s nice. Thank you.

Michael:                       00:18:55          And, I thought about that when I played this guy. I thought about, he doesn’t know he’s bad. He doesn’t know he’s-

Alan:                            00:19:01          No. He’s succeeding. He’s doing what he wants.

Michael:                       00:19:04          He [crosstalk 00:19:04].

Alan:                            00:19:04          He’s getting what he wants.

Michael:                       00:19:04          Yeah, it’s great.

WHEN WE RETURN… MICHAEL TELLS HOW HE DECIDED TO CREATE THE MJF FOUNDATION

MIDROLL

REJOIN

 

Michael:                       00:38:02          Well, like I said there was almost seven years in the desert where i just kind of dealt with it. And I got about five years in, or in 1994. I remember it being really dark days before then like I said, with drinking and quitting drinking, which is tough. And tensions that it caused with my marriage which had always been good and has been amazing since. And it just got to where I just said, ” I have to learn more about this.”

But 95, about four years in, I started to really press my doctors and really press scientists and ask questions. So then I gathered all this knowledge and then went to work on my own show, on Spin City, and after a time realized that I needed to tell people about it because it was affecting. I had Parkinson’s but my character didn’t have Parkinson’s. And it was kind of difficult to keep [crosstalk 00:39:29].

Alan:                            00:39:28          There are so many things to think about when you’re an actor. You got to hit your mark, you got to stay in focus, you got to keep out of the other person’s light so you don’t put a shadow on them.

Michael:                       00:39:28          Yeah. You got to know all your lines.

Alan:                            00:39:37          You got to know your lines. And now you have to also notice what can I do to keep from shaking during this shot.

Michael:                       00:39:45          Can I lean against this desk? Can I manipulate this pencil? Can I roll this ball around in my hands? Can I clasp onto somebody’s shoulder? So, then I decided that I needed to tell people, so I told them. And like I said, once I did that I realized I started being approach by the Parkinson’s community. And I just saw that there were people, that there was not only a resource to me personally in terms of having a shared experience and comparing notes and being a part of a community outside of the business, outside of my family, outside of anything. It was just a unique community that I belonged to.

And I started to notice more people on the street, like the old lady that before was annoying when she took so long to get into the elevator and push the button. I now recognized her as having symptoms of Parkinson’s and related and said I’m part of this community.

Alan:                            00:46:33          When you met the community-

Michael:                       00:46:41          Well, when I-

Alan:                            00:46:41          Of people with Parkinson’s and researchers and so on, how did you find you could be helpful?

Michael:                       00:46:49          Well, they reached out to my initially. It was only a few days after I disclosed my diagnosis. And it was funny because, and I have a similar sense of humor to you, I appreciate the fact that people met it with glee and in the community, “Wait! Michael Fox has Parkinson’s. [crosstalk 00:47:09]”

And I thought, how honest is that?

Alan:                            00:47:11          I got a couple like that too.

Michael:                       00:47:13          That’s so honest, it’s great. We think you’re on our side now. So, I was open when they called, the different foundations called, the different organizations called. And the first one I responded to, just because I have a vent this way, was the political people who said, ” We’re grossly underfunded. The science is ahead of the money, we have opportunities to do this and we need conscientious, deliberative, generous funding to fulfill our possibilities.” And so, I went to Washington with this group called Parkinson’s Action Network and testified in front of congress.

And, the big thing for me developmentally was, and again, being part of the community in a public way, was I decided not to medicate for my testimony. Because everyone had seen the cleaned up version of me for years. I had the disease and I had put so much effort into hiding and it and covering it. I just thought I’d let me free flag fly. And I did and it was very  effective. And the community … And, the other thing that happened there is I testified along side scientists who said to me, at the time and quite optimistically and it turned out not to be the case, but all the same, they said, “We could be five, 10 years away. If we press agenda. We don’t know how successful we could be. But their enthusiasm picked me up. And I just thought, “Well, if this is the case, if this is about research. There are groups that do patient support and groups that do other treatments and align people with therapists and doctors. But there’s no specific organization just for science. Just purely science.”

So I talked to a few people and I talked to some business people. And they said to me, “The people you want to get involved beside scientific people and there’s probably entertainment people that you work with that would want to get involved on a board level. But you want to get business people involved. And people that are used to setting goals and accomplishing them, and want to get champagne on them at the end of the day when they have the big win.” And I thought, “That makes sense.”

So, I put together this board and leadership of the company, the foundation, based on people would find innovative ways to do this and not do it in way the chapter based fountain of old retail kind of … But just find an organ that was a fast moving, disruptive, take no prisoners, attack on this disease. And that happened.

Alan:                            00:50:25          In that process did you worry about any effective it would have on your life to be what you might call the poster boy for Parkinson’s?

Michael:                       00:50:25          Well I thought-

Alan:                            00:50:38          Did that bother you at all?

Michael:                       00:20:36          I didn’t want it to be a vanity thing that the Michael J Fox. In fact I wanted to call it PD Cure. But Tracy said, when I told her that, she said, “Pedicure.” So eventually we fixed my name to it. But I wanted it to be a foundation that was serious and was going to get … Be when people woke up in the morning, say “Who’s doing this.” That we were doing it.

Alan:                            00:21:01          Yeah. So, you’d be a focal point of the research.

Michael:                       00:21:04          And so, what we did was we decided very early on that we weren’t going to have an endowment. That the science was a head of the money and we were going to deal with it that way. The science is ahead of the money. So we wanted the money to go directly to the science as quickly as possible.

Alan:                            00:21:17          So you decided not to build an endowment.

Michael:                       00:21:20          We don’t have-

Alan:                            00:21:20          And so money came in, you’d just spend it on research right away.

Michael:                       00:21:23          Yeah.

Alan:                            00:21:23          But you must get an awful lot of money every year.

Michael:                       00:21:27          We fund over 100 million. We should be at a billion dollars billed out within a year and a half.

Alan:                            00:21:35          How do you do it? How do you raise so much money every year?

Michael:                       00:21:38          We have amazing development people and we have people that are very wealthy that are interested in this.

Alan:                            00:21:47          That’s so great.

Michael:                       00:21:48          And they’ve made their bet with us.

Alan:                            00:51:20          Yeah. Yeah. You were really creating a structure. You weren’t a two dimensional image to raise interest or to led yourself. You weren’t lending your celebrity, you were lending your whole brain to it.

Michael:                       00:51:34          I was offering my whole brain to it. I wasn’t lending it. I was fiving it, in a sense that, I go where my brain goes, and my brain goes where I go. And then both have to have … I always say mind and brain. Your brain can take over your mind and your mind can take over your brain. And I prefer for my mind to have the upper hand. My brain could decay and have cells dying and stuff like that, but my mind will direct it, what’s left of it, to do what I want to do.

 

MUSIC BRIDGE

Michael:                       00:06:31          So, what we’re doing with the foundation, one of the things that our real excitement is about, we do cover many things in many areas, we got our fingers in every bit of research all around the world. But, we’re looking toward preventing the manifestation of symptoms. And that means identifying the disease before it manifests. And it-

Alan:                            00:06:53          So, sleep is one of them. What was are some-

Michael:                       00:06:55          Sleep is one. The other one is lack of taste.

Alan:                            00:06:57          Yeah.

Michael:                       00:06:59          Lack of smell.

Alan:                            00:07:00          Yeah.

Michael:                       00:07:02          Or diminished smell, diminished taste. Mostly diminished smell. And also, then there are the genetic things that we’ve discovered. There’s a gene called LRRK2. There’s an abundance of a protein alpha synuclein, that is a protein that misfolds. So, now we understand all that stuff. So, what we want to do is get a cohort of about 100,000 patients/non patients, people with indicators. Mostly people with indicators, the acting out sleeping, the not smelling, the, maybe, genetic pre deposition. LRRK2 is three percent of Ashkenazi Jews. And Ashkenazi Jewishness is also another risk factor.

So, we take that at risk group, loosely at risk group, of 100,000 and then we whittle them down to 10,000, then whittle them down to 5,000. Then whittle-

Alan:                            00:08:13          You’re whittling them down in what way? What do you mean?

Michael:                       00:08:18          They may have those symptoms, but they don’t have-

Alan:                            00:08:22          In other words, to track what symptoms you can find that are not common ones or-

Michael:                       00:08:27          So, we can ultimately get to a place where if you can come in fresh as a daisy and we can say, “You’re going to have Parkinson’s and you need to follow this course of-

Alan:                            00:08:38          When in fact, it sounds to me that it’s not so much that they’re going to have Parkinson’s, but they got it, and it hasn’t shown it’s most obvious symptoms yet.

Michael:                       00:08:48          Yeah. Exactly. You’re going to have the symptoms of Parkinson’s. If we can act now. So, what we like to do is, in short of curing the disease in the conventional sense, we’d love to do that. But, if we can eliminate the progression of symptoms and help progression, before it even starts-

Alan:                            00:21:49          I wanted to ask you about something that the foundation does that I just found about this morning, and I’d like to hear more about it. Which is, Fox insight. What is that? You’re gathering information from people with Parkinson’s, right?

Michael:                       00:22:10          We’re gathering people’s experiences with Parkinson’s. And we do it a number of ways. There are measurable devices, the watches that record your symptoms and your behavior as a purely neurological, reactive, kinetic. When you’re reactive, when you’re slow, when you’re bradykinetic, when your dis kinetic.

And also, anecdotal experiences as related to doctors and related to us. And we have this data-

Alan:                            00:22:46          What do you mean by that? Anecdotal experiences?

Michael:                       00:22:48          Well what … I take these pills and they do this for me, and I feel like this on certain days. This is my experience [crosstalk 00:22:55].

Alan:                            00:22:54          I see. So they’re giving you data about their experience.

Michael:                       00:22:57          So we’re getting a picture of the experience.

Michael:                       00:24:11          And our primary objective right now, is to really get it down to that moment that, what’s the word, nascent work when the proteins react with whatever. They miss fold, and why are they miss folding at that point? And at that point can we arrest it?

Alan:                            00:24:38          So, you’re really working in many ways on early detection.

Michael:                       00:36:33          Yeah. Hopefully we’ll get to a point where we can do imaging, or blood tests, or something. But, I would think imaging would be the most likely thing. That we can say yes, you have nothing now, but you have … There’s a convergence of data that tell us that you are going to have Parkinson’s. So therefore, take this, this.

Alan:                            00:36:55          So, the hope is that there’s, what everybody hopes for I guess, is a pill or injection.

Michael:                       00:37:01          Some kind of therapy.

Alan:                            00:37:01          That will just enable you to not go down that road.

Michael:                       00:37:05          It will help progression and eliminate symptoms.

Alan:                            00:37:07          Yeah.

Michael:                       00:37:08          And the thing that people say to me when I tell them that, they say, “Well, that doesn’t do anything for you.” And I say, “It does everything in the world for me.” It’s the most amazing thing. If I could be a part of that, that would be astounding.

MUSIC BRIDGE

Alan:                            00:09:08          I think one of the things that I learned in this process of developing this ailment, is that … And it surprised me because it has a name. So, you think it’s one disease. But, it’s almost like it’s a lot of diseases because, the symptoms vary from person to person. One day varies for one to another. You told me this … You were one of the first people I told that I had it. And, I remember our talking about how different each day is. One day you think, “Oh it’s gone.” And the next day it’s worse.

Michael:                       00:09:45          Yeah. The disease really is a bitch. It’s really-

Alan:                            00:09:49          And then the end time for two or three people with Parkinson’s can have three completely different outcomes at the end of their life. They can outline the Parkinson’s, they can get dementia, they can not get dementia and have other [inaudible 00:10:08].

Am I right about that?

Michael:                       00:10:09          Yeah. I always say, people tell me, and quite sincerely they’ll say, “My aunt died from Parkinson’s.” Or, “My so and so died from Parkinson’s.” I say, “You don’t actually die from Parkinson’s. You inevitably at this point die with Parkinson’s. But we’re hoping to change that. But, you don’t die from it.”

And it is a multitude of … There’s an assumption that it’s a lot of different conditions that have similar triggers and similar neurological signatures that they can be connected by different experiences.

Like, for me, I was diagnosed at 29 in 1991. And I would have never thought that in 2018 I’d have as functional life that I have.

Alan:                            00:34:16          That’s one of the things that’s holding us back as a people, as a culture, from to ditching the stigma of Parkinson’s and the stereotype of Parkinson’s is that we hear the word Parkinson’s and we picture the worse possible ending. And we thinking, “OH, that’s the end of your life.” So many people have said to me, especially in the beginning, “I’m so sorry.” Well, that’s nice I appreciate that, bu I can hear that it’s coming form a place of belief that the world has just come to an end. The word might come to an end eventually, but it hasn’t come to an end yet. And early detection is so important to me if it’s coupled with the knowledge that you can do something about it.

Alan:                            00:42:53          You know, I’m thinking as we talk, people that are listening to this, and they’re having whatever reactions they’re having. Butwhat about friends and family who have Parkinson’s? What would you suggest? What’s the best way to relate? Or somebody you work with?

Michael:                       00:44:29          I think, don’t project. If you’re dealing with someone who has Parkinson’s, or you have someone in your life has Parkinson’s, don’t project what you think your experience is onto them. And try to anticipate their needs and wants based on what you think they’re experiencing. Listen to what they’re experiencing. I mean, God bless you for being there and being supportive in the first place. But, beyond that let me [quivel 00:44:50].

Don’t treat them like an alien.

Alan:                            00:44:56          Or victims.

Michael:                       00:44:56          Or victims. Yeah. Or they’re something other. Mostly it’s about projecting their own feelings. And people will sometimes say to me, “There’s old Harry and we’ve been married for 40 years. And I just keep him doing this and doing that. And he just doesn’t know that.” And, I just think, let’s get harry in the conversation.

Alan:                            00:45:17          Yeah.

Michael:                       00:45:17          Hear what Harry has to say. Because he might think that isn’t necessary, some of the things you do. Not to dump on caregivers or anything, like I said, they’re essential. But, I mean, Tracy, a story I always tell is, I’ve written couple books, and so have you. And, one of the books I wrote was specifically about optimism, it was called Always Looking Up. And I was having a hard time meeting my deadlines. I’d just get passed a couple of deadlines, and I was a little stressed.

Alan:                            00:45:51          On writing the book, you mean?

Michael:                       00:45:52          Writing the book. And I was a little stressed because I hadn’t got as much done as I wanted to. I said to Tracy, “I’m never going to finish my book on optimism.” And she said, “You know you said that out loud.”

Alan:                            00:46:06          Did you know how funny that was.

Michael:                       00:46:08          No. I saw how funny it was when I saw her reaction.

 

MUSIC BRIDGE

 

Alan:                            00:57:09          I’m so glad to see that you’re so active in this organization that you founded. That you’re really helping make it all happen. And you didn’t just have an idea and then other people took it over.

Michael:                       00:57:23          Well, I don’t schlep to the office every day, but I’m certainly in touch on a regular basis with what they’re doing. And any new initiatives that come up they run by me and we have a conversation about it. And certainly broader patient involvement we talk about.

So, yeah. It’s very important to me … Not so much that it’s very important to me that my name is one it so, therefore I want it to be. And that’s so blah, blah. I just want it to work. And to extend that I can contribute I will. And to the extend that my contribution is not needed I’d appreciate if someone would say, “You can shut up now. Because you’re not bringing anything to the conversation. We’ve now gone beyond your ken.”

Alan:                            00:58:01          Well, this hour’s had an effect on my life, because I’m going to go home and sign up for Fox insight. Can I also see on there, aside from giving my own details about what I go through, can I see what other people are going through?

Michael:                       00:58:18          Yeah. It’s all available. I’ll put you in touch with … I’ll get someone from the foundation to call you and guide you through all our programs.

Alan:                            00:58:28          This had been great. Thank you so much.

Michael:                       00:58:30          This is so great. So great to see you.

Alan:                            00:58:32          Can I ask you … We end our conversations with seven quick questions that have something vaguely to do with communication. Are you game for those?

Michael:                       00:58:43          Sure. Six.

Alan:                            00:58:45          Seven quick-

Michael:                       00:58:46          I can only do six.

Alan:                            00:58:48          You only do six.

Michael:                       00:58:50          [inaudible 00:58:50].

Alan:                            00:58:50          Well, you can pick the one you don’t want to do. Okay, here’s the first one. This is an interesting question because we ask these same questions, but this is a funny one coming at the end of this conversation. What do you wish you really understood?

Michael:                       00:59:52          Why I like things to be mysteries.

Alan:                            00:59:55          Oh, that’s interesting.

Michael:                       00:59:56          I wish I understood why I don’t need to understand everything. I just need to understand specific things. If I could figure out Parkinson’s or I could figure famine, or I could figure out something. It doesn’t have to be everything. Just one thing would be great.

Alan:                            01:00:16          Okay. What-

Michael:                       01:00:17          And I’d figure out what to do about it.

Alan:                            01:00:17          Here’s the-

Michael:                       01:00:18          And I’d figure out why it happened.

Alan:                            01:00:19          Here’s the next question. What do you wish other people understood about you?

Michael:                       01:00:27          I don’t give a lot of thought to it. What other people think of me is none of my business. I hope they understand that I just want to be a cog in the wheel. I just want to be part of the process. Part of life.

Alan:                            01:00:40          What’s the strangest question anyone’s ever asked you?

Michael:                       01:00:44          The two that you’ve just asked me. Either one.

Alan:                            01:00:49          Either one. You haven’t turned one down yet.

Michael:                       01:00:50          The strangest question anyone has ever asked me.

Alan:                            01:00:54          Okay, here’s another communication question. How do you stop a compulsive talker?

Michael:                       01:01:02          Don’t listen. And answer in non connected ways to what they just said, just move on in conversation. Not reprimand them and not say, “I don’t want to talk about it.” But just say, “So, how about those Mets?”

Alan:                            01:01:18          So, just come in from another angle.

Michael:                       01:01:19          Come in from another angle if it’s-

Alan:                            01:01:21          Yeah. Is there anyone for whom you can’t feel empathy?

Michael:                       01:01:28          Yeah. Bullies. I just can’t stand bullies. So prevalent right now, what we’re dealing with. I just can’t … I have no time for … I have nothing to add to what they bring to the world.

Alan:                            01:01:45          How do you like to deliver bad news? In person, on the phone, or by carrier pigeon?

Michael:                       01:01:53          Carrier pigeon. I don’t like to deliver bad news.

Alan:                            01:01:57          You just don’t like to do it?

Michael:                       01:01:58          I don’t like to do it because the way I would deliver bad news is the good news/bad news thing. I’d manufacture some good news to soften the blow if I had to.

Alan:                            01:02:40          Okay. Here’s the seventh question. What, if anything, would make your break a friendship?

Michael:                       01:02:51          Act of cruelty of against someone who couldn’t defend themselves. Just, going to that bullying thing. I just don’t have any room for cruelty and for forcing your will on somebody who can’t defend themselves. I can’t.

Alan:                            01:02:51          Yeah. Right.

Michael:                       01:03:11          It’s just so many … I mean things like kids at the border.

Alan:                            01:03:19          I’ve had such a good time talking with you. This was really fun. Thank you. Thank you for being so open.

Michael:                       01:03:25          Thank you. Thanks for coming. It was great to see you always.

Alan:                            01:03:25          It was great.

Michael:                       01:03:29          And give Arlene my live.

Alan:                            01:03:30          I will. And give Tracy a hug. I’ll see you when we have dinner in a little while.

Michael:                       01:03:34          Yeah. All right.

Alan:                            01:03:35          Okay. Bye bye.

Michael:                       01:03:36          bye.

 

Michael is an amazing person and he’s helped a lot of people — and not just people with Parkinson’s — he has positively impacted society by tackling challenges through a lens of optimism and humor. His message has always been one of gratitude for the support he has received from his fellow Parkinson’s patients, including me.

My hope in interviewing Michael is that we would be able to further encourage each of you – whether a patient, an advocate, a family member, or a friend – to take action — no matter how big or small.  Everything we do will advance the pursuit of a cure.

For more information about Michael’s foundation, please visit: www.michaeljfox.org

And, I love his book Always Looking Up: The Adventures of an Incurable Optimist– pick up a copy. You’ll enjoy every word.