Though Iverson narrates in first person, he lets others tell the story. Pictured: the producer as a baby, with his dad, who was diagnosed 30 years earlier. (Photo: Frontline.)
Iverson responds to his diagnosis with report about Parkinson’s
My Father, My Brother, and Me opens with producer Dave Iverson running on a treadmill. In voiceover, he says he knew he had Parkinson’s long before his official diagnosis — when he ran, his left arm didn’t swing like the right.
Playing the dual roles of reporter and subject is new for Iverson, who has been producing and hosting local and national public TV and radio programs for nearly 30 years — including 22 years at Wisconsin Public TV — and now works as an independent producer and KQED radio host in the San Francisco area.
Iverson got his official diagnosis in 2004 and began planning the film soon after. “This was the way he wanted to respond,” says Michael Schwarz, co-producer of the film, which airs tomorrow night on Frontline.
In fact, the project helped Iverson tell his 96-year-old mother that he—like her husband and older son—had the neurological disorder. It was easier to tell her about the diagnosis and the film at the same time, he says. It helped her feel like he was taking charge of the disease instead of letting it take charge of him.
In My Father, we see Iverson as a baby in a home movie, bouncing on Dad’s knee. Iverson and his mother look at old photos of his father and talk about his stint as the Lone Ranger in the original radio production. Mrs. Iverson, who noticed her husband was holding his hand strangely in 1971, remembers, “He was mostly concerned about his voice, because he did have a good voice and that deteriorated gradually. Toward the end, he really couldn’t talk.”
Later, Iverson talks with his older brother Peter, a history professor who has been living with Parkinson’s since 1992 but continues to write and teach at Arizona State University. “It’s always there, it’s one of the first things you think about in the morning,” Peter says. Iverson, whose symptoms so far are minor, recalls how Peter responded when the younger brother was diagnosed: “You said, well, we’ll just have to fight this together.”
These familial portraits provide a structure for the film, which Iverson fills in with reporting that looks back at Parkinson’s research and forward to possible treatments and cures. Along the way, he visits people living with the disease, investigates new research about the role genetics plays in Parkinson’s, shows viewers what happens in the brain to cause the disease, and unpacks the debate over the ethics of using stem cells in research.
“If this were just a story about what happened to my family, I don’t think it would be that interesting,” says Iverson, who reported on Parkinson’s research 20 years ago for the NewsHour. “I’m fortunate to be doing as well as I am, and I’m very fortunate to have had the opportunity to make this film.”
More than a TV program
Iverson wanted a co-producer who had a less intimate relationship to the content, so he joined forces with friend and fellow pubTV veteran Schwarz, head of the production company Kikim Media. Schwarz says he got involved in part because of his own experience with Parkinson’s — his mother-in-law has had the disease for 15 years.
Iverson and Schwarz spent many hours discussing how much the film should be about Iverson. “There’s a fine line between a personal story that people can relate to, that helps personalize certain narratives, and something that can seem sort of self-indulgent,” Iverson says. He worried about getting the tone right—after all, “everyone has problems,” he says.
Getting funding for the project was tough at first, and Iverson and Schwarz began work without many resources. In early 2007, they landed a $250,000 grant from the MacArthur Foundation — about half the film’s final budget. Iverson had submitted a proposal to Frontline, and Executive Producer David Fanning was “touched and intrigued by Dave’s situation and the way he as planning to take in on in a film,” according to Ken Dornstein, senior editor at Frontline. With the MacArthur grant in hand, the project got the nod from Frontline, and Fanning suggested a joint project to the Independent Television Service, which kicked in $125,000.
Iverson initially expected an airdate sometime in May or June 2008, but Frontline had more timely reports they needed to air. “It has been a pretty extended process,” he says.
From the beginning, Iverson wanted the project to be more than a TV program. He’s been doing presentations and leading discussions around the country. “You want your work to be useful,” he says.
“Dave very early got that people like to talk after they watch a TV show,” says James Steinbach, head at Wisconsin Public Television and a longtime friend and colleague. In 2005, Iverson hosted the national outreach follow-up to the American Experience episode “Two Days in October,” about a 48-hour period in 1967 when 61 American soldiers were killed in Vietnam and a student protest at the University of Wisconsin turned violent.
For this week’s Frontline, MacArthur was particularly interested in funding outreach, and Iverson wanted to provide footage and information as it became available on a program website, pre-broadcast. He promoted the project on the Michael J. Fox Foundation’s website and others, pointing users to the program site with information about the latest research, living with Parkinson’s and links to support groups. Iverson and Schwarz also started a blog, which they hope will get more traffic after the broadcast.
Iverson also posted short video reports, mostly supplementary material not used in the broadcast. One showcases new research that proves exercise may be effective in combating Parkinson’s. And Iverson recorded several commentaries, or “thinking pieces,” as he calls them, which reflect on whether he’s ready to begin taking Parkinson’s medication — once he does, the pills will always be part of his life—and whether he, as a Catholic, can support stem cell research. He liked these video reflections a year ago, he admits, but now they don’t feel right.
In retrospect, Iverson thinks it might not be a good idea to start putting out content five months before a broadcast, especially when the broadcast date could change. It’s hard to keep up the momentum, he says.
Finding the right balance
The biggest challenge to covering the topic of Parkinson’s in 60 minutes was “finding the right balance of the personal, the politics, and the science — and doing it all on a story that was a moving target,” says Dornstein, noting that President Obama may soon lift the ban on stem cell research.
Dornstein and Iverson decided that having Iverson speak directly to the camera would feel too newsy. Instead, he narrates in first person and appears in scenes, which he thinks makes the film feel more introspective. And he lets others tell the story. “Dave’s encounters with various Parkinson’s sufferers are really the spine of the film,” says Dornstein.
Steinbach says Iverson shied away from doing personal work at WPT, though he encouraged others to do so. “What he knew best was to have a little bit of distance and let other people’s stories come through,” he says.
“He’s able to get things done because . . . people come along with him,” Steinbach adds. “A whole generation of producers here grew up working under and with Dave.”
In 2001 Iverson moved back to the Bay Area, where he grew up, to be near his family, but he continued to work with WPT as head of the CPB-funded national project Best Practices in Journalism. Steinbach calls him WPT’s “West coast bureau.”
Working with Frontline was an amazing — and challenging — experience, Iverson says. Dornstein and other execs asked questions and kept pushing the producers to find the right structure. For example, they thought the program needed a more detailed explanation of the disease’s connection to the stem-cell controversy and how it plays out in Washington.
Schwarz, who has worked on several other Frontline projects, says he and Iverson struggled to give shape and coherence to the vast amount of information about Parkinson’s and “find a way to balance the hope and despair.”
“In a story like this, the story you’d like to tell is how someone found a cure,” he says. “This is a story that doesn’t have an ending.”
Researchers are making progress, but slowly. Iverson tells the story of Peter Sauer, whose Parkinson’s symptoms could no longer be controlled by drugs. Specialists in Halifax, Nova Scotia, transplanted fetal cells into Sauer’s brain — cells that release the chemical dopamine, the neurotransmitter whose absence causes the disease.
auer’s symptoms significantly decreased, and he was able to walk normally again. Though some subsequent fetal brain cell transplants have failed, scientists are working with the concept of “brain repair.” And, they continue to look for environmental factors that could trigger the disease.
While researchers used to think genetics played no role in Parkinson’s, they are now beginning to identify genes where mutations can cause the disease, with the hope of creating drugs that can fix these mutations.
Iverson enrolled in a genetic study at the Mayo Clinic in Jacksonville, Fla., and in the film, he lets viewers in to some of his conversations with doctors.
“It’s my understanding that you come from Norway. Your background is Norwegian?” asks a doctor.
“My grandfather was born in Norway. Larviik, Norway,” Iverson says.
Iverson was fascinated to learn that researchers had traced the most common Parkinson’s gene mutation to his ancestral home. They believe it spread there because of the Viking occupation, and Iverson’s grandfather’s birthplace is next door to Norway’s first Viking settlement.
“With your particular description of your disease and your family history, there’s quite a high chance, I would think, that you have a genetic form of the disease,” Mayo Clinic geneticist Matthew Farrer tells Iverson.
Iverson takes viewers into the lives of others living with Parkinson’s. He talks with Michael J. Fox and writer Michael Kinsley about their views and advocacy regarding stem cell research. And he introduces us to Tom Shearer, whom he met in a Parkinson’s exercise class, and his wife and caretaker Madeline. The couple talks about surviving Tom’s memory and mobility problems.
“One of the real major problems for anyone with Parkinson’s [is] the memory aspect. I don’t know where that’s going to lead,” Tom says.
“There was a long period when Tom would go out and get lost and neighbors would call on their cell phones and say come get him, he’s at the corner of such and such,” Madeline says. Tom now takes the drug Aracept to help with memory problems.
“Parkinson’s requires of all things a kind of gracefulness, an ability to shift and adapt, to change medications for what feels like the millionth time and still smile,” Iverson narrates.
The courage of people like the Shearers was humbling, says Schwarz. “What always impresses me is the people who give their time and participate and open up their lives to you, no matter how challenging their lives may be,” he says. “It’s always a privilege to get to meet these people. . . . probably the best part of the job.”
Iverson continues to talk about his own experience and making the film. He usually hosts the Friday edition of KQED-FM’s call-in program Forum, but today he’s a guest on its show about Parkinson’s. Last week, he talked with Terry Gross on Fresh Air. Eventually, he’ll move on to his next project, which may or may not be as personal. “I don’t think I would shy away from that if it ... would contribute to how the story is told,” he says. “In the end, that’s what matters.”
“I’m enormously optimistic about what the future will bring,” says Iverson, referring to advances in research and new evidence that exercise can help manage the disease. He adds: “Denial can be a useful device sometimes, and I really believe I’m going be fine.”
“I’m not naïve about what the future will bring or that there will be a cure — what I believe is that I will be able to lead my life and continue to do what I want to do.”
Web page posted Feb. 3, 2009
Copyright 2009 by Current LLC
