Director's Cut

>> They've each had something go missing. Steadiness of hand or sureness of step. The once confident stride or arms that swing. Parkinson's claims them one by one. Even, sometimes, the ability to smile. [Train station announcements in background] They've each had something go missing, but the dream to move freely never goes away. >> Hi. Welcome to Director's Cut. I'm Pete Schwaba, and that was a clip from Capturing Grace, a documentary about people with Parkinson's disease who deal with the symptoms by finding grace through dance. We're joined today by the film's director, Dave Iverson. Dave, welcome to Director's Cut. >> Thank you, Pete. It's a pleasure to be here. >> It's great to have you. So, this is your second film you made about Parkinson's disease. Talk a little bit about your own experiences with the disease, if you would. >> Sure. Well, Parkinson's has been a part of my life for a long time. My dad was diagnosed with Parkinson's in the early 1970s, and about 20 years after that, my older brother, was, as well. And then in 2004, I was, which led me to making a film for the PBS Frontline series that was, in part, about my own family's saga with Parkinson's but also explored other aspects of living with the disease and the research and, also, where I first go introduced to this particular program. >> And we should say the other film is My Father, My Brother, and Me, and that was a PBS series. What was more challenging? Or did you learn-- I assume you learned a lot about the first one, and that helped in making the second film. >> You know, I spent most of my career working in broadcasting and television, a lot of time here at Wisconsin Public Television >> Right, here. Yeah, that's great. >> My Father, My Brother, and Me is a more traditionally reported documentary of the sort of traditional Frontline Public TV sort of style. This is actually more filmic, I guess you would say. Except for that little bit of narration that you just heard, the rest of the film is non-narrated. So, it was different in that way. And it's funny, you probably couldn't have a title much more personal than My Father, My Brother, and Me. >> Yeah. >> And yet, I would say, in the end, this film, Capturing Grace, became more personal to me. >> Interesting. >> In the end, it really meant more to me. Meant more to me, actually, than probably anything I've ever had the chance to work on, and that's for a variety of reasons that maybe we'll get to talk about. >> That narrator, I've heard him before. He's got one of those voices. Where did you find him? >> Well, that would be me. >> That was you? >> That was me. >> Why would you go out of house, if you're in broadcasting? Boy, that's interesting. I didn't catch that. So, how did the Mark Morris Dance Group get involved with this? Did you seek them out, or did you already know these people were dancing? >> Well, when I heard about it, it seems like such an

unusual idea

people who move for a living working with people who sometimes struggle to move at all, people with Parkinson's disease. >> Yeah. >> But the Mark Morris Dance Company is one of the world's great modern dance companies, and they had offered classes for people with Parkinson's for many years. And when I heard about it, I thought, "That sounds so interesting." And so I filmed a little bit there as part of that Frontline film, and when I was there, it was just so extraordinary to see the impact that it had, to see the way in which people were really transformed through the act of dancing that I knew I wanted to come back some day and do something longer. It's very much part of their philosophy of making that dance center in Brooklyn, in the heart of Brooklyn, something that's part of the community. Whether there are schools for little, classes for little kids or older people or people with Parkinson's or hip-hop classes for teenagers, it sees itself as part of the community, and offering classes for people with Parkinson's was just one more part of it. >> Let's talk a little bit more about that after this next clip. Let's see another clip from Capturing Grace. >> What happens to me when my feet feel like glue and they're stuck on the floor? I sometimes cannot walk, but I can dance. I can give you an example. >> Shall I start? >> Yeah. >> For example, right now I'm off. You can see my hand is shaking. I have the tremor. If I try to walk, I have a great deal of difficulty. I can walk a little bit, but if I pretend I'm dancing, I can go...

dance taps clicking on floor

unusual idea

And I don't have any problems. >> The music leads. In other words, it's not my brain telling me to take a step or to do this or do that. The music is leading me. So, I'm following this wonderful leader who's so mysterious and has such a lovely sound, and it's going to take me to some other place. >> What is that other place? >> Well, excuse me.

CRYING

unusual idea

It's a place where you're weightless. Your body is just, it's just flies. It doesn't tug at you. Tug you and pull you and push you and have you in these knots where you can't move and you can't think and you're struggling and fighting. You just go above that. >> So, Cindy was diagnosed in '88, and her condition was probably the most severe out of anyone else in the film. Talk a little bit about how, and that's when I really got this film. She's more comfortable dancing than sitting. Talk about that a little bit, what that's like for someone with PD. >> Yeah, exactly right. Yeah, Cindy's a remarkable woman and very affected by Parkinson's. She has a lot of what's called dyskinesia, which are sort of these excessive movements that you sometimes have seen and associate often with Michael J Fox. It's something that can happen progressively over time with Parkinson's that also has to do, actually, with the long-term effects of the medication. The medication helps you move, but after a long period of time, it can make you move too much. >> Okay. >> So, that's some of what's going on with her. And she was so, as she put it, "So tied down," and struggled with that, and it pushes her down and it ties her up. And what you see there is this sense of release and freedom and grace that you have when you have that experience of dancing. It's true for many of the other people in the film. We don't really know why that happens. There's something about the mystery of music and art. >> Yeah. >> Michael Fox says there are times when he can't walk, but he can skate. There's something about certain learned memory, muscle memory and the sense of rhythm and grace that can sometimes take you beyond a condition that can be so confining. >> Be an escape almost from the... >> That's right. And one thing that's important, I think, to note about this, is they don't talk about Parkinson's. When you go to a rehearsal or you go to a dance class. The emphasis isn't that this is a Parkinson's dance class. The emphasis is that it's a dance class. >> Yeah. >> They're there to dance. >> Right. >> It's about dance. It's not about, "If I can dance, I'll be able to button my shirt better." It's really about the opportunity to express oneself artistically and to go beyond what is so often a confining influence in your life. >> When we talked the other day, I told you my grandpa had Parkinson's, and he was always real active and he did yoga before a lot of people knew what yoga was. Very health conscious. And you said it's a very idiosyncratic disease. >> Yeah. >> Talk about that a little bit and explain that, if you would. >> It is. There's an old saying, which is, "If you've met one person with Parkinson's, you've met one person with Parkinson's." >> Yeah. >> Because it's so varied. Michael Fox sometimes says everyone gets their own version of Parkinson's, but, unfortunately, none of them come with operating instructions. And that's the truth. Even within my own family, it's a very varied condition. And there's some people, like me, who are extraordinarily lucky who do really well and can do really well for a long time. There are people who can be much, much more affected. And you see both within this film. But it's the nature of the condition, and that's part of what makes it challenging, as well. >> You talk about it's idiosyncratic, but it seems to-- You have other members of your family that have it. Is that more the norm? Or is it more just... >> It's relatively unusual. There are about 5% to 10% of all people with Parkinson's who have some genetic connection. But that's not actually the norm. For a long time, it wasn't even thought that there was any genetics involved in Parkinson's. We know now that there is, and that's actually useful from a research standpoint because it allows people to study something in a very specific way right down to the DNA that they hope can actually provide a way to understanding the disease in a broader way. >> Let's see another clip from Capturing Grace. >> I started dancing when I was eight, and I started with ballet lessons. It was one of those things that I fell in love with right away. And I knew that dance was always going to be part of my life. >> John was one of the first people I met when I started dancing with Mark's company. We were friends for our entire careers dancing with Mark, which was almost 15 years. And then 11 years ago, we started teaching this program together, and I was thrilled to know that he was actually able to do the performance project. >> Five, six, seven, toe drops. >> What a performance brings to a group, it heightens your focus. It makes everything more intense. The stakes a little bit higher, which is good. >> You are the leader. >> Mm-hmm. >> Judy, you are the follower. >> When we're watched doing something that we love, we tend to be even better than we were when we were just practicing it. And I believe that principle is going to hold true with this group as well. >> Luckily, though, the pressure is off because it's not as though the show is being filmed for a documentary or anything.

laughter

unusual idea

So, I think it will be fine. >> Yeah, No pressure. So, dancers are artists. They can be temperamental. You're a filmmaker. I'm sure you can be temperamental. Did you ever get impatient with the dancers while making the film? Was there any tension between any of those parties? >> No, they were incredibly welcoming to me. They opened up their lives in so many ways. The Parkinson's dancers, John and David, the two people who were just part of that last clip who were the founding teachers of the program, were also really open and really wonderful to work with. They're both extraordinary guys. David was a star within that dance company. One of the leading modern dancers of his time. And John is now a rising star in the world of choreography. But, they both care deeply about this program, and David has now taken it on as his second calling in life. It's what he devotes all his time to. And that clip that we just saw is right as we're getting into the build-up towards the performance that they're going to put on, which we see at the end of the film. >> So, you seem totally like this is all in your wheelhouse here. You got Parkinson's, which you know a lot about. You know how to make a film. How do you walk the line between advocacy and filmmaker? Is there a balance there somewhere? >> That's a great question. You know, going back to the Frontline film that I did, it was much more traditionally reported film,

much more

I was the objective reporter, as much as I could be, and I worked on it collegiately with another producer, which was helpful in that regard. As I say, in this one, I actually got even closer to it. It's a more intimate film. It's a more personal film. I came to be quite close to those individuals. I worked with an extraordinary cinematographer and a wonderful editor, and they helped keep me honest about that. And, you know, you have to make tough choices. As you know, whenever you're putting together a program, you have to make sure whatever you do, it advances the film. >> Right. >> You can't let that be skewed by the story you want to tell. You can't let that be skewed by your affection for a particular person. But, that said, this is not a work of journalism. It's not what I've spent most of my life doing. >> Yeah. >> It's really a story about, to me, some remarkable human beings who take a difficult circumstance and rise above. >> Was that easy? I mean, you were a journalist, so was this easier, in a sense, to just kind of lose yourself in their stories or this program, or did you find the journalist creeping up at times? >> Well, no. I think I stayed back in the making of it. You know, I didn't get out there and dance in the middle of a scene or anything. >> Why not? Why didn't we see you out there? >> Well, you wouldn't necessarily want to. So, I played that sort of more traditional role, but I became close to those individuals. >> Yeah. >> They opened up in such a full and revealing way that you can't help but be affected by that. They taught me so much. I learned so much from them. They opened up my own heart. And I don't regret that. You know? >> Yeah. >> I allowed myself, in a way, to be closer to them than, certainly,in any other film project that I had ever done. And we remain close. You know, we correspond. I talk to them. It's a special bond. >> Yeah. Well, let's see another clip from Capturing Grace. >> My name is Charlie Tobey, and I was diagnosed over 25 years ago. I was the chairperson of the Department of Physical Education and Exercise Science at Brooklyn College. I've always described myself as an athlete. I like to think of myself as an athlete. >> There's the James Dean shot. >> When I was diagnosed, I realized that I couldn't do the things that I was used to doing. I really gave up most of those activities. And then I needed something to feel good about, movement-wise, so I started to dance. Here was a picture of me taken for Runner's World. >> I remember. >> Finishing the New York Marathon. >> I was there. >> And we took this magazine with us whenever we went on vacation for the next five years. >> To show people. >> To show my face. >> You liked to show off a little bit. >> Yeah. >> When I think of the fact that you were this super athlete and you got Parkinson's, you never seemed to get completely depressed or down or complain. Why is that? How is that? >> I tend to be a very positive person. I look at the positive side of things because if I walked around miserable all the time, I wouldn't make anybody happy, including myself. So, rather than complain or talk about what I can't do, I talk about what I can do, and that makes me feel better. >> Where did you get that philosophy? I don't get how you do that. I just think it would be really, really hard. >> Now when people see me, they don't say,"I saw Charlie Tobey." They say, "I saw Charlie Tobey," and they think this, "who has Parkinson's," and I can deal with that. I don't think it's a disgrace. I'm not embarrassed. I think it's made me a better person, a stronger person, someone who is willing to take chances and try to get the best out of my life that I can. >> He kind of brings that competitive spirit that he had to the disease, it seems like. You were talking a little bit, while we were watching the clip, about him. Expand a little bit about his story, if you would. >> Well, here's this guy who was this extraordinary athlete. His whole life was about the body. He became the chairman of the Department of Physical Education and Exercise Science at Brooklyn College. Everything for him was physical. And then he has this disease that takes that away. And so what does he do? He starts dancing. I mean, you know, the film, there's a line of narration that begins the film,

which is

"They've each had something go missing." >> Right. >> Steadiness of hand or sureness of step. Parkinson's claims them one by one. And I wrote that because Parkinson's is, in many ways, a disease of subtraction. It takes things from you. And one of the many things I learned from Charlie and

many of the others is

that if you're contending with a disease of subtraction, you better believe in addition. >> Yeah, right. >> You better keep adding things back into your life, and that's what he did. And he did that relentlessly despite being seriously affected by this condition. I'll remember one time during rehearsal, after the rehearsal I said,, "Charlie, how are you doing?" And he said, "Well, compared to five years ago, not so great. Compared to five minutes ago, I'm doing fine." >> Great attitude. >> And that's-- He might as well walked around with a plus sign on his shirt. >> Right. >> Because he took that importance of adding into your life so literally. >> Also, when we spoke the other day, you said something I thought was interesting. You said you think in many ways you're healthier now since you've had Parkinson's. Explain that a little bit. >> Well, I mean, number one, I'm lucky. I feel like I drew the right card. >> Okay. >> So I'm not nearly as affected as many, many people with Parkinson's. The meds work great in me. So that's a huge blessing. But I also, the day after I got my diagnosis, I joined my neighborhood gym. I'd always been reasonably fit, but I somehow had this feeling that I think a lot of people with Parkinson's do, which is, "I need to stay in control of my own body." And so I took that and I got obsessive about exercise, which it turns out is actually probably the best thing you can do. A lot of neurologists will now tell you the amount of exercise you do is as important as the pills you take. And so I'm a runner, or more accurately, a slow jogger. I have had the opportunity to run in some marathons to raise money for Parkinson's research. I've been able, in an odd way, to do things I never would have dreamed of doing before. So, you know, again, I'm hugely lucky. Not everyone has that opportunity, but if you're lucky and if you take that to heart, I do think, in an odd way, it can open up possibilities that might not have been present to you before. >> That's interesting. So, do you dance? You didn't in the film, but do you attend these? You live in San Francisco, but are there places out there you do this? >> I could. I don't. I elect to get my exercise in other ways, but, yeah, there's a dance program in Madison, Wisconsin. There are 110 Dance for Parkinson's programs all over the globe. >> No kidding. >> And in 11 different countries. And there are half a dozen in the San Francisco Bay area. It's a wonderful exercise, but what it also brings is, you know, there's mental discipline to dance. You can't just do whatever you want. You have to remember the steps, right? You have to know where you're going. So, it combines a kind of focus, a mental sort of discipline along with physical discipline, and many people think that's part of why it is such an effective avenue for people with Parkinson's to pursue. >> Let's see another clip from Capturing Grace. >> Reggie's had a number of challenges over the past several years, and in spite of them, he has always come back to class. >> He was in the hospital for about two weeks. When he came back, everybody applauded and stood up.

applause

many of the others is

>> Hi, Reggie. Hi. Hi, you guys. Come on in. We'll get a chair for each of you. >> I'm good. How are you? >> Good. I had been in the hospital, and the outpouring that they gave to me is unbelievable. >> When Reggie entered the room, I felt like this has turned into a real dance community but, more than that, a dance company. >> All right, Collin, we're ready to go. >> Strike a pose, my friend. >> He just led in his quiet, powerful way. His form, his shape. He just came in and he was an artist. >> They're so dedicated to what they're doing, and that's the key. You got to fight. You have to fight to keep dancing. >> So, you just told me that the recording stopped and she sang, "And you call it a happy accident." I love that about filmmaking. Those little moments on set you weren't prepared for, but they just turn out to be gold. Talk a little bit about that. >> We were just playing that back. My wonderful director of photography, Eddie Marritz, had the idea of just playing that song on his iPad, and it was playing back, you hear sirens in the background, it is Brooklyn, and Bobbie has this beautiful voice and she's singing along and then all of the sudden the iPad shut down and Bobbie just sang it out. And it was, it was a magical moment. >> Talk about the work you do with the Michael J Fax Foundation, ohhh, Michael J Fox. >> I first became associated with them when I was doing that earlier Frontline film, and I interviewed Michael J Fox for that film and have since been fortunate enough to be involved with the foundation in a couple of ways. I serve on their Patient Advisory Counsel, and I also do work for them. You know, both producing little stories about Parkinson's research as well as moderating things at various conferences. A fantastic organization. I believe in it with my whole heart. It's nothing like a little self-interest to sort of have something you want to fully believe in. But I do them, and that's a great thing to have if you're involved in something like this to have an organization that you think is really doing exactly the right thing. >> We just have about 30 seconds left, but I wanted to ask you, what are the reactions? Are they different from people? I assume you show this to advocacy groups or people with Parkinson's. Are you accomplishing with the film what you want to? Getting reactions? >> Yeah, I mean, we had a first screening of it in Brooklyn for friends and family and all the dancers and people from the Mark Morris Dance Center, and that was wonderful. And I remember feeling like that night, you know, if that's all there is, that's okay because it meant so much for, I think, everyone there to see it. I've had a lot of nice reaction to it at film festivals around the country. It's been in about a dozen film festivals, including the wonderful Wisconsin Film Festival here. So, it seems to strike a chord with people, both people with Parkinson's and, I hope, also, and I think, also, for people who don't. >> Yeah. >> That there's something about this story that has to do with how you face adversity and can rise above that, that carries meaning regardless of your own circumstance. >> Well, you did a great job, Dave. Thanks for being here. >> Thanks, Pete. >> We appreciate it. >> Thank you. >> Our pleasure. And thank you for watching Director's Cut. For more information on Capturing Grace, please go to WPT.org and click on Director's Cut. While you're there, send us an email or find out how to submit a film. Also, don't forget to "like" WPT on Facebook or follow us on Twitter. I'm Pete Schwaba, and just because I can't dance doesn't mean you shouldn't. We'll see you next time on Director's Cut. >> Many people with Parkinson's have said to me this is a very difficult disease but, on the other hand, I was able to find dance because of it, and, for that, I'm extremely grateful.