http://www.pbs.org/frontline/parkinsons/news/ en-us Copyright 2009 Sat, 14 Feb 2009 14:29:33 -0800 http://www.sixapart.com/movabletype/ http://www.rssboard.org/rss-specification here.

Thank you for helping to make this online forum a great success!
]]> http://www.pbs.org/frontline/parkinsons/news/2009/02/thank-you.html http://www.pbs.org/frontline/parkinsons/news/2009/02/thank-you.html Sat, 14 Feb 2009 14:29:33 -0800 click here to read what our viewers, Dave and PD experts had to say so far.

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. ]]> http://www.pbs.org/frontline/parkinsons/news/2009/02/the-conversation-continues.html http://www.pbs.org/frontline/parkinsons/news/2009/02/the-conversation-continues.html Wed, 04 Feb 2009 00:01:00 -0800 click here to share your 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! ]]> http://www.pbs.org/frontline/parkinsons/news/2009/02/join-our-live-conversation-now.html http://www.pbs.org/frontline/parkinsons/news/2009/02/join-our-live-conversation-now.html Tue, 03 Feb 2009 15:36:26 -0800 not to these days, isn't it? And so in this last blog post, I'd like to say something about that four letter word.

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!  ]]> http://www.pbs.org/frontline/parkinsons/news/2009/02/hope-for-parkinsons.html http://www.pbs.org/frontline/parkinsons/news/2009/02/hope-for-parkinsons.html Tue, 03 Feb 2009 08:00:00 -0800 available online and the broadcast premiere is just a few days away, I've been thinking a lot about my experiences over this past year and a half of production.  When I was taping an interview about the film for NPR's Fresh Air (to air on Monday or Tuesday afternoon), Terry Gross asked me what I'd learned along the way. In my last few posts, I'd like to reflect a little on that question.

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... ]]> http://www.pbs.org/frontline/parkinsons/news/2009/01/shoes-on-again-what-ive-learne.html http://www.pbs.org/frontline/parkinsons/news/2009/01/shoes-on-again-what-ive-learne.html Fri, 30 Jan 2009 06:50:30 -0800 My Father, My Brother and Me site! If you've visited before, you'll notice we've got a new look and lots of new features -- you'll find extended video from our interview with Michael J. Fox, answers to some of the most frequently asked questions about Parkinson's, and more. But maybe most exciting, by just clicking the link on the homepage you can now watch our whole film right on this site (five days ahead of our broadcast premiere -- an online-only sneak preview). So take a look around, and use the comments feature here at the producer's forum to let us know what you think!

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! ]]> http://www.pbs.org/frontline/parkinsons/news/2009/01/new-features-and-coming-soon-a.html http://www.pbs.org/frontline/parkinsons/news/2009/01/new-features-and-coming-soon-a.html Thu, 29 Jan 2009 11:48:31 -0800
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! ]]> http://www.pbs.org/frontline/parkinsons/news/2009/01/when-parkinsons-runs-in-the-fa.html http://www.pbs.org/frontline/parkinsons/news/2009/01/when-parkinsons-runs-in-the-fa.html Tue, 27 Jan 2009 05:54:59 -0800 news that the FDA has approved the first human trial of human embryonic stem cells -- specifically to test the potential of the cells to treat spinal cord injuries. It's a major step forward in stem cell research, but I can't help also thinking about the dollars and cents implications of a study like this.

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?
]]> http://www.pbs.org/frontline/parkinsons/news/2009/01/the-price-of-science.html http://www.pbs.org/frontline/parkinsons/news/2009/01/the-price-of-science.html Fri, 23 Jan 2009 05:44:21 -0800 this overview of the projects his lab does and this article.)

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. ]]> http://www.pbs.org/frontline/parkinsons/news/2009/01/will-stem-cells-be-the-answer.html http://www.pbs.org/frontline/parkinsons/news/2009/01/will-stem-cells-be-the-answer.html Tue, 20 Jan 2009 11:26:22 -0800
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?   ]]> http://www.pbs.org/frontline/parkinsons/news/2009/01/in-november-of-1998-two.html http://www.pbs.org/frontline/parkinsons/news/2009/01/in-november-of-1998-two.html Fri, 16 Jan 2009 05:33:29 -0800
But that's the great thing about having this blog. We have a place to explore some of stuff that would otherwise be left on the cutting room floor. For example, my co-producer, Michael Schwarz, and I, struggled with whether to include a segment about a procedure known as Deep Brain Stimulation.  For a variety of reasons, DBS is not a focus of our film, but that doesn't mean it's not an important part of the overall Parkinson's story.

DBS is a surgical technique that can often provide real relief of some symptoms for people with more advanced Parkinson's, particularly when medication no longer seems effective. However, the relief DBS provides doesn't always last long.

Last week, the results of a the largest study about DBS conducted so far were reported, and it confirms the technique's usefulness. The patients the study followed faced some risks -- about half of the DBS recipients faced at least one "serious adverse event" after getting the treatment -- but overall the study found DBS more effective than the existing drug therapies. You can read more about the results here.   

And if you want to know more about the history and science of DBS, try this article.

Last, I'd recommend reading a column by Time magazine writer Michael Kinsley about his personal experience with DBS. Kinsley is a wonderful writer, and his comments about the politics of the stem cell debate are included in the film. But to get his take on DBS, -- including how to casually drop the "conversational bomb" that you've signed up for brain surgery -- click here. 

What's your take on DBS? Have you had the surgery? Or considered it? Please use the "Comments" link at the top of this post to share your experiences.
]]> http://www.pbs.org/frontline/parkinsons/news/2009/01/can-you-shock-away-the-shakes.html http://www.pbs.org/frontline/parkinsons/news/2009/01/can-you-shock-away-the-shakes.html Tue, 13 Jan 2009 04:43:51 -0800
In time, this would become an important focus for our documentary. On the preview page of this site, you can see some of the interesting animal research being done at the University of Pittsburgh. And when the full length film debuts, you'll also see footage of one of the first major human studies of the effect of exercise on PD patients. It's led by Dr. Lisa Shulman at the University of Maryland. If you want a sneak peek of what she's doing, check out the second study listed on this site.

And beyond the research world, there's lot of interesting stuff happening in community centers, gyms and dance studios all around the country. Check out what John Argue is doing in Berkeley, California or what two members of the Mark Morris Dance Group are doing in New York. You'll also see more about both those efforts in the film itself.

I find these efforts encouraging because it reminds us of what we can do for ourselves. But I also know that it's easy for me to make this pitch because my symptoms are quite mild. Still, I'm moved by both the people who take these classes and by those who teach them, including my daughter Laura and my cousin Peter, who are now using their skills in dance and physical therapy to lead classes in their own communities.  And most of all, I'm inspired by the people I've met over the course of our filming who face far tougher physical challenges than I and are still out there ... stretching ... walking ... and even hitting the dance floor. ]]> http://www.pbs.org/frontline/parkinsons/news/2009/01/exercise-empowerment.html http://www.pbs.org/frontline/parkinsons/news/2009/01/exercise-empowerment.html Fri, 09 Jan 2009 09:43:52 -0800
Today we're just four weeks away from the broadcast of our new film about Parkinson's: My Father, My Brother, and Me. It will be televised on FRONTLINE on Tuesday, February 3 (check local listings for the broadcast time in your community) and available online starting January 29. This site will be our online headquarters as we gear up for the broadcast and online premiere, so look for new posts each Tuesday and Friday and check out the preview clips and the links to various resources.

For most of us, the Parkinson's journey begins when you start to sense something is not quite right. Each of us experiences that moment in different ways, but there's a universality to that discovery that we all share. Michael J. Fox describes it eloquently in the film and you can preview what he has to say here. But of course what quickly becomes crucial is how we respond to that discovery. Few of us are able to start a research foundation -- as Michael J. Fox did in response to his Parkinson's diagnosis -- but we all do have something to learn and to share about how to contend with this condition. So I'd like to start out this series of posts by asking you to write about what you've learned in responding to your own diagnosis, or to that of a friend or family member. What's worked for you? What resources have you found useful? Let's begin a conversation about what we can all learn from each other.

Thank you for visiting this site, for sharing your ideas and for helping to let others know about our upcoming broadcast. More to come on Friday ...

]]> http://www.pbs.org/frontline/parkinsons/news/2009/01/welcome.html http://www.pbs.org/frontline/parkinsons/news/2009/01/welcome.html Tue, 06 Jan 2009 08:00:00 -0800 I'm excited to announce that our film on Parkinson's Disease, "My Father, My Brother and Me," will air on FRONTLINE on February 3, 2009. (Check your local PBS listings for the exact time.) In the lead-up to that date, we'll be re-launching this site, so check back the first week of January for fresh video, new blog posts and updated content. We look forward to re-connecting with this virtual community and starting a new round of conversations. More soon! http://www.pbs.org/frontline/parkinsons/news/2008/11/coming-soon-1.html http://www.pbs.org/frontline/parkinsons/news/2008/11/coming-soon-1.html Mon, 24 Nov 2008 13:30:00 -0800
And now just a few notes on the presentation by Dr. Robert Edwards of the University of California San Francisco on Parkinson's prevention. Dr. Edwards believes the key to Parkinson's prevention is gaining an understanding of why you get the disease and why it progresses. As far as why people get the disease, much of what he discussed wasn't new. He reviewed how genetics might provide an early window into what goes wrong in Parkinson's patients and discussed the ongoing research into environmental toxins that might trigger PD. But he also added something I've heard before but hadn't really considered in any detail. That's the idea that the toxic exposure that might trigger Parkinson's could be internal as well as external. Dr. Edwards pointed out that because dopamine, the neurotransmitter that goes missing in Parkinson's, can itself be toxic, it may be that some people get Parkinson's because their brains for some reason are more susceptible to dopamine's toxicity. If you could safeguard the brain better in those cases, you might achieve Parkinson's prevention. It's an intriguing thesis.

As noted at the top of this post, we're going to put this site on hiatus for the next few months. We'll be back in the fall as we approach our anticipated airdate later this year. Thank you for your interest in our project to date. It's been very gratifying, and I look forward to exploring new ideas and directions with you in a few months.
]]> http://www.pbs.org/frontline/parkinsons/news/2008/06/parkinsons-prevention-and-a-pr.html http://www.pbs.org/frontline/parkinsons/news/2008/06/parkinsons-prevention-and-a-pr.html Wed, 04 Jun 2008 08:55:55 -0800