Reasons for Hope
Photo: Dave Iverson at mile 23 of the New York City Marathon on Nov. 6, 2011. (Credit: Reesa Tansey)
I never really thought that making My Father, My Brother and Me would wind up re-orienting my life, but that’s exactly what happened. Yes, I still host a public radio call-in program in San Francisco and I continue to do reporting and documentary projects for public television, but making that film was life changing. It made Parkinson’s much more central in my life.
I’ve continued to do very well. My symptoms remain minor, well contained by a combination of medication and exercise. But because of the film, I’ve wound up becoming engaged in a variety of Parkinson’s-related activities, including speaking at various conferences. And that in turn has given me a chance to meet remarkable people all around the country and around the globe.
I remember one young man in particular I met in Glasgow, Scotland. He came up to chat with me after I gave a talk at the World Parkinson’s Congress in the fall of 2010. He was a young man with early onset Parkinson’s, and he’d come all the way to Scotland from his small town in southern Indiana to learn what he could do about the disease he was facing.
He’d brought with him his 10-year-old boy, and while they were there, learning about Parkinson’s, they were also going to do a little sightseeing. They were going to go to Loch Ness, the home of that mythical sea monster. They were going to go fishing, the boy told me, just to see what they might catch. Seeing the two of them together, a young man already severely affected by Parkinson’s, with his arm wrapped tightly around his 10-year-old boy, was deeply moving. I think that young man knew something about the meaning of the phrase, “the fullness of time.” He and his son were there together … to learn … to see … and maybe catch a little hope.
And it is that hunger for hope that forges the common denominator across the incredibly diverse continuum of Parkinson’s disease. As Michael J. Fox likes to say, we each get our own version of Parkinson’s disease, but unfortunately none of them comes with operating instructions. And that’s of course what people with Parkinson’s and their families want to find: operating instructions to figure out what we can do rather than what we can’t. As the late Harvard theologian Peter Gomes once wrote, “Hope doesn’t get you out, but it does get you through. To be without hope, is to be without a future.”
And there is reason for hope. The world of Parkinson’s research has exploded in the past three years, in part because scientists are discovering that the disease is so much more complex than once thought. We used to think that Parkinson’s was all about dopamine, the neurotransmitter that goes missing in the disease and is key to how the brain signals movement to the body. Fix the dopamine supply, the thinking went, and you fix the disease. Now we’re realizing that many things that affect people with Parkinson’s — from depression to losing your sense of smell — have a different origin. This is good news and bad news. The bad news is that solving Parkinson’s has become a more complicated task. The good news is that scientists are discovering new targets for treating the disease.
All the researchers profiled in the film are still hard at it. Dr. Lisa Shulman’s study on exercise revealed important findings about the benefits of exercise. As I write this, University of Pittsburgh scientists Judy Cameron and Michael Zigmond are in China developing a new large animal exercise study. Dr. Clive Svendsen continues to explore how to spur the development of growth factors, proteins in the brain that help nurture and protect neurons. Bill Langston’s Parkinson’s Institute is engaged with exciting new efforts to tackle dyskinesia, those excessive movements associated with long-term use of Levodopa, and the institute is also actively engaged in environmental, genetics and stem cell research. On the genetic front, Dr. Matt Farrer tells me new genes are continuing to be implicated in Parkinson’s research, and Dr. Ole Isacson and other stem cell scientists continue to make headway in that incredibly important but complicated field.
And then there’s the increasing interest neuroscientists have in what impacts the brain’s plasticity, from Tai Chi to tango. David Leventhal continues to lead the Dance for PD program at the Mark Morris Dance Center in Brooklyn, an effort that has now spread to some 75 communities around the world, including classes being offered for the first time ever in China. Last year, I did a story for the PBS NewsHour about Parkinson’s and dance, and now I’m following some of those same extraordinary dancers with Parkinson’s as they get ready for their first public performance in New York later this year.
All of which is part of why last November, I did something I never thought I could do. I ran in the New York Marathon to benefit the Michael J. Fox Foundation for Parkinson’s Research. It’s an odd thing isn’t it? I never would have run a marathon if I hadn’t been diagnosed with Parkinson’s. And yet I have to say I’m probably prouder of those 26.2 miles than anything I’ve ever done. And so I’m going to do it again … and this time, in addition to raising money for Parkinson’s research, my goal is to raise volunteers to participate in that research.
And that’s because despite all the promise, research isn’t progressing as fast as it could. And here’s one reason why: Eighty-five percent of all clinical trials are delayed because they can’t recruit enough volunteers to participate. So I’m going to try and get 100 people to sign up for research. It’s probably the single most important contribution anyone can make towards speeding the search for a cure for Parkinson’s. So if you’d like to learn more about participating in clinical trials and my own run, please visit: www.teamfox.org/goto/iverson.
And last, but surely not least, an update on the real star of the film: my mom Adelaide. Just as she says in the film, “She’s still here.” In fact, the year 2012 marks two momentous occasions in my family: my Mom’s 100th birthday and the arrival of my first grandchild, my beautiful new granddaughter Hannah.
My life continues to be remarkably blessed.