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But we still want to hear what you have to share, too. Click here to post your comments, questions and stories. Dave Iverson and PD experts Ole Isaacson, Michael Zigmond and Bill Langston will check back periodically through next Tuesday, February 10 to answer your queries about PD and the film.
Dave will also be participating in a live chat at washingtonpost.com at 11 a.m. ET on Wednesday, Februrary 4. Click here to go to the Washington Post chat site.
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reactions to the film, tell your own stories of how PD has affected your life and ask any questions you may have about Parkinson's and the making of My Father, My Brother and Me. Correspondent Dave Iverson is logged on, ready to respond, and PD experts Ole Isaacson, Michael Zigmond and Bill Langston will also check in to answer questions over the next few hours. We'll be live from 10 p.m. ET until 12 a.m. PT -- join us now!
Harvard chaplain and author Peter Gomes has written, "The only hope we've ever had is out in front of us, leading and guiding us to a place we've never been before." And that's essentially the challenge that's in front of both Parkinson's researchers and those living with the condition. We have to get to a place we haven't been before, and hope is central to what gets us there. No doubt we'll have plenty of setbacks on the road ahead ... no doubt there will be times when we feel the battle against Parkinson's won't be won.
But sometimes I think we focus too much on "winning" and "losing" the battle. And while I have no doubt that someday we'll find a cure for Parkinson's, I also recognize it may not be anytime soon. In the meantime, what we can do is fight the battle. And that's what gives me hope. My colleagues and I have met so many dedicated researchers who stay up nights trying to solve this mystery. We've met so many people whose perseverance, adaptability and grace show the rest of us what it really means to win. I have hope because of all of them. I have hope because of my remarkable family. And I have hope because we can't afford to be without it.
And don't forget -- we'll continue this conversation in our live online discussion following the broadcast tonight, beginning at 10 p.m. Eastern time. See you back here tonight!
One thing I've been struck with time and again is how people with Parkinson's still accomplish remarkable things. Of course I think of my brother Peter, who despite receiving a Parkinson's diagnosis while still in his forties, has gone on to publish more than a dozen books about American Indian history and has received numerous awards including a Guggenhem Fellowship. As Regents' Professor at Arizona State University, he's successfully guided more American Indian history PhD students to completion than anyone in the field. As he says, "It's my 38th year as a college teacher and I still think it's the best job in the world."
And I think of someone like Time Magazine columnist Michael Kinsley, whose acerbic wit and extraordinary writing talent make him one of the keenest observers of American life. If you see Mike Kinsley's name on the byline, it's worth reading. And of course there's Michael J. Fox who's probably done more than anyone to raise both the awareness and the dollars it takes to fight Parkinson's. As Michael notes in the film, "Parkinson's has asked so much of me that I would never have asked of myself." Parkinson's may ask a lot, but nobody has responded quite like Michael J. Fox
But I also think about less well known people we met, like Tom and Madeleine Shearer, who personify perseverance, humor, adaptability and positive thinking. Tom has PD. He was once one of San Francisco's most accomplished tax attorneys and Madeleine had a career in medical publishing. Today they focus on more mundane challenges, like getting into a car or putting on your shoes. But it's Tom who articulates -- with three short words and a smile -- an attitude that perhaps best sums up how to face the future: "Shoes on again," he says as another day begins.
All of these individuals look forward with courage and determination. They inspire me. And it's been the great good fortune of those of us who worked on the film -- including my colleagues and friends: co-producer Michael Schwarz, executive in charge of production Kiran Kapany, editor Gail Huddleson and photographer Vicente Franco -- to spend time with these individuals and all the others we were privileged to meet. We are honored to tell just a small part of their story. And we invite you to please tell yours in the comments section of this blog.
More on this topic next Tuesday...
I'll still be posting here tomorrow and next Tuesday, as usual. Plus, after the film's broadcast next Tuesday, February 3, we'll be having a live online discussion here starting at 10 p.m. ET. I and some of the nation's preeminent Parkinson's experts will be on hand to discuss the film and answer your questions -- so be sure to log on!
That's a dilemma that will increasingly confront more families in the future. Until recently, Parkinson's was not thought to have a genetic basis, but now scientists think family ties matter for a small, but not insignificant, percentage of people with the condition.
So if you have several family members with PD, should you get yourself tested? Ideally, the point of genetic testing is to identify a risk that you can do something about. For Parkinson's this would mean someone with a family history of the disease could take a test long before symptoms begin and then take a drug that would fix the genetic mutation, stopping the disease before it even starts. But we're not there yet. So in the meantime, given that testing is available but a cure isn't, what should families do?
This is where it gets very personal. Some people like the idea of knowing what may lie ahead. Others feel there's no point. In my own family, the "next generation" is taking a wait and see approach. At the moment, they feel they know what they need to know (including the value of exercise!) and that a genetic map of the future isn't that useful. But I also know of others, including Google founder Sergey Brin, who've made a different choice. It's a very personal question for which there's clearly no right or wrong approach.
What do you think? If there's a history of Parkinson's in your family, I'd be really curious to hear your views, so please add your comments using the button at the top of this post!
In his inaugural address, President Obama spoke of restoring science to "its rightful place," a call that I'm sure heartened researchers everywhere. But as we all know, our economy is currently facing enormous challenges, and the effects of the downturn have spread far beyond Wall Street -- University endowments that are key to funding scientific research are losing money, and some research projects -- including a Parkinson's project -- were even compromised by the Madoff affair. And ultimately, how much we spend on research will depend in part on other competing needs. So will returning science to "its rightful place" really mean an uptick in what we spend on research, or will other worthwhile efforts -- from education to defense -- trump what we spend on science? It's obviously too soon to know, but there's no question that in an era of competing financial demands, how we choose to spend research dollars will become even more crucial.
And that's why the role of the many Parkinson's foundations who support research is so crucial. The government-run NIH, the biggest funder of neurological disease research, can't do it all. As Dr. William Langston, the founder of the Parkinson's Institute, points out, "NIH isn't enough. You have to have money to chase new leads, to do things that NIH can't fund."
So in an era of tight financing, which projects are most deserving of financial support? It's a tough question. On the one hand, we don't want to shortchange long-range projects whose payoff may not be imminent. On the other, those of us with a chronic condition want to see research aimed at what will benefit patients the soonest. In the end, restoring science to its "rightful place" is not just about deciding what that place is, but also how much it costs.
What research do you think deserves funding even in these strapped times? Who do you think should decide which projects get funded?
But one of the things I learned while working on the film is that Parkinson's is complicated. While stem cells may well prove to be a source of dopamine production, there are other symptoms that frequently plague people with PD that can't be easily explained by a neurotransmitter deficiency ... everything from loss of sense of smell to constipation. Bill Langston -- head of the Parkinson's Institute and another voice in our film -- has some useful thoughts on the complexity and what lies ahead in this article.
So as we begin the new Obama era, it's worth remembering that as all of us know, Parkinson's is no easy foe, and the task ahead will be daunting. Yet I also think we can be hopeful -- no matter our politics -- about what science, in ways still unimagined, will bring us in the years ahead.
One was Michael J. Fox stepping forward and revealing his struggle with the disease, and the other had to do with a research breakthrough: the discovery of embryonic stem cells as a potential route to a cure. While the first sparked both admiration and support, the second proved far more contentious. Because embryonic stem cells can become any tissue in the body, they've been the source of enormous hope for fixing certain conditions, Parkinson's among them. But because the source of the cells are tiny frozen embryos left over from fertility clinics, it's also been the source of controversy, and within a few years, President Bush established strictly limited federal funding guidelines for embryonic stem cell research (guidelines that the Obama administration is expected to change ... keep your eye on the headlines in the coming weeks).
Like so many topics in our political culture, this debate has often been polarizing, colored by rhetoric instead of reason. But two of the most articulate commentators on this topic are columnists Michael Kinsley and Charles Krauthammer. Kinsley has Parkinson's and wrote a wonderfully candid column about his own "coming out" in 2001 that also includes his views on stem cells as an option we can't afford not to explore. Krauthammer suffers from a spinal cord injury that might also someday benefit from embryonic stem cell research, but he raises thoughtful concerns about the moral issues. While he thinks the guidelines established by the Bush administration were too narrow, he worries that we may be rushing into very murky terrain. Here's one of his columns on the subject.
You'll hear from both of them in our film -- it's now less than two weeks to our online launch! -- but I would also encourage you to browse their writings. Their views are worth exploring beyond what we were able to fit in our 60 minute show.
And as always, we're interested in hearing what you think as well. Where do you come down on this important debate?