In my last post, I promised to report back from a symposium on whether Parkinson's can be prevented. Some notes on that presentation follow, but I want to begin by giving you an update on our project. We're now entering the final stages of editing the documentary, and we're very excited about how it's coming together. We've also been very gratified by the early response to this website. However, because we're now not going to be on the air until the late fall, we think it's best that we put this site "on hold" for the summer months. We'll relaunch in the fall with frequent posts and fresh material leading up to our broadcast. If you haven't done so already, just click on the link to subscribe to our RSS feed and you'll get notification as soon as we're back.

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.

"Can Parkinson's Be Prevented?"

That's the provocative title of a symposium I'm attending this evening. Dr. Robert Edwards of the University of California San Francisco is giving the featured talk. Most of the conversation surrounding Parkinson's focuses on treatment and the long hoped for cure, but the idea of prevention is at least equally important.

How might PD be prevented? Well, in working on this documentary I've come across three approaches. First, determining a definitive trigger for the disease. As you've probably read elsewhere, researchers have focused a lot of attention on possible environmental triggers for the disease, with pesticides being the most frequently citied potential cause. If a definitive link could be established, then removing that source from the environment would hopefully prevent disease occurrence. "We haven't found the smoking gun yet," says Dr. William Langston at the Parkinson's Institute, "but that's what we're looking for."

A second way scientists often talk about prevention is through genetics. Familial Parkinson's is relatively rare, but the geneticists who study PD think that those cases may provide key insights into how to stop the disease in its tracks early on. That's because genetics might allow us to identify people susceptible to the disease long before symptoms ever start. If you could intervene in those cases at that early point, you could in effect prevent the disease. And scientists like Dr. Matt Farrer at the Mayo Clinic in Jacksonville are hopeful that they can figure out how to fix the genetic mutation that leads to familial Parkinson's, then apply that fix to the more common form of the disease. As Farrer comments in our video post, "How close are we? A lot closer than we were ten years ago. A lot closer."

A third way Parkinson's might be prevented, or at least slowed down, is through a variety of neuro-protective approaches. While none of these is firmly established yet, some scientists think that something as basic as exercise may have a protective effect. You might have viewed our earlier video showing researchers at the University of Pittsburgh who trained monkeys to run on treadmills and then injected them with a low dose of a toxin that creates a Parkinson's-like condition. The monkeys who'd been exercising were much less affected than the control animals.

So, those are three ways I've found scientists approaching Parkinson's prevention. But there may well be new developments. I'll be very eager to hear what Dr. Edwards has to say this evening and will report back on his presentation in my next post.

From Kirsti Potter, FRONTLINE Parkinson's disease project Web site coordinator:

A couple of you have mentioned in comments that you participated in Parkinson's disease clinical trials. We thought the rest of you might be interested in learning a little more about what clinical trials are and how you can get involved in one.

When you hear "clinical trial," the stereotypical image that comes to mind is of people in lab coats passing out pills to a room full of human guinea pigs. But the term actually covers a broad range of experimentation: there are drug trials, but also tests that evaluate new physical therapy techniques or cognitive exercises. For Parkinson's disease alone, there are dozens of clinical trials going on around the country right now, on subjects ranging from new computer technology that can help diagnose the disease to methods for improving PD patients' eye safety.

Clinical trials take laboratory discoveries and test how they work in real people living in the real world. The key ingredient is those real people. Clinical trials need volunteers to function. If you think you might be interested in getting involved in a one, check out PDtrials. This site, a joint initiative run by a group of PD patients' groups, offers a ton of information on new trials and how to get involved. There's a searchable directory of clinical trials that you can also sort according to the trials' objectives, sponsors, subjects' symptoms, or location. There's also a feed with the latest news from trials that have already concluded.

If you've already participated in a clinical trial, use the comments to let us know what the experience was like. Was it empowering? Disappointing? Frustrating? Fun? Would you do it again?

On this day after the Pennsylvania primary, there are few points of consensus among the candidates. But here's one example: John McCain, Hillary Clinton and Barack Obama all support embryonic stem cell research, and whoever becomes president will likely lift the current federal funding restrictions. After all the debates and political hubbub, that's about the only common denominator I'm capable of noting!

Regardless of political agreement, the debate over embryonic stem cell science and the role it may play in treating diseases like Parkinson's is unlikely to go away completely. And that's in part because of another public figure who was very much in the news this past week: the Pope. 

I grew up in the Catholic Church and still attend mass with some regularity. The Catholic Church, of course, remains unalterably opposed to embryonic stem cell science, which presents Parkinson's patients like me with an interesting dilemma. Do I pay more attention to my body or my faith? It's tempting to think that recent success creating stem cells by re-programming adult skin cells will get out us out of this quandary and circumvent the moral arguments. But most scientists say we should keep going with embryonic stem cell research, too, and that means the ethical dispute is not going to go away anytime soon. 

Here's a quick synopsis of how the debate evolved. In August of 2001, President Bush established federal funding guidelines for embryonic stem cell research: fund research that used existing stem cell lines; deny funding for research that would require utilizing any additional frozen embryos. He said his decision was based in part on a set of moral beliefs.

Those who opposed Bush's decision argued that the moral value of a potential cure trumped the value of a leftover fertility clinic embryo that would otherwise be discarded. The journalist Mike Kinsley, who happens to have Parkinson's, is of this school of thought. His point of view is that the Bush funding restrictions represent years of delay. "Every year that goes by, science opens new doors", he says, "And every year, as you get older and your symptoms perhaps get worse, doors get shut. Six years of delay in a field moving as fast as stem-cell research means a lot of people for whom doors may not open until it is time for them to shut."

It's a persuasive argument (and you'll see more of Mike Kinsley in our documentary). But here's another view. Charles Krauthammer is a journalist who contends with a spinal cord injury, another condition possibly benefiting from stem cell research. Krauthammer supports most embryonic stem cell research, but he sounds a more cautionary note. "'The slope is very slippery. Which is why, even though I disagreed with where the president drew the line -- I would have permitted the use of fertility-clinic embryos that are discarded and are going to die anyway -- I applauded his insistence that some line must be drawn, that human embryos are not nothing, and that societal values, not just the scientific imperative, should determine how they are treated." Krauthammer's views will also be included in our film.

And where do I come down in the end? My not very conclusive musings on this topic are viewable in a video you can watch here. I promise to have them more worked out by the time our film is finished! In the meantime, I'd really welcome hearing your views on the stem cell debate and how you've worked your way through the various arguments.

From Kirsti Potter, FRONTLINE Parkinson's disease project Web site coordinator:

Dave, Michael and I have noticed a pattern in this site's visitor comments: many of you are looking to connect with each other. This site is a start -- we'd love to see you all share and bond here -- but there are also many more developed support resources available, online and in person. Sometimes they're not as easy to find as you'd hope, so we want to highlight some tactics for connecting with other PWPs.

If you're looking for a local support group ...

• The Parkinson's Disease Foundation has a directory of support groups nationwide. To find the ones closest to you, call PDF (800-457-6676) or email them: info@pdf.org
• Try calling your local hospitals. Most hospitals sponsor support groups and keep tabs on independently-organized groups in their area.
• The National Parkinson Foundation maintains this searchable database of support groups around the country.
• This site may look homemade -- a Parkinson's patient built and maintains it -- but it has an impressive list of support group options.
• There are even resources to help you launch your own group. Start with the American Parkinson Disease Association's booklet How To Start a Parkinson's Disease Support Group. You can order a copy here.

If you're looking for online support ...

• If you haven't explored this site's "Readings & Links" page yet, start here for an introduction to the best PD Web sites.
• The Parkinson's Disease Foundation has compiled an exhaustive catalog of online PD resources. You can download their booklet here. (PDF file)
• For Young Onset PD patients, the Arlette Johnson Young Parkinson's Information and Referral Center offers a service called "Person to Person" that works like a pen pal program. Download and fill out the form available on this page, and the center will help match you with another young person living with PD.
  
• Jean, a PD patient and a visitor here, pointed us towards this site she runs with her friend and fellow PD patient Sheryl. Not only does it offer useful information about living with PD, it's also an inspiring example of the good things that can come from a supportive relationship that started online.
  
• If you're looking for another place to post and comment online, mega-site WebMD has an active message board community. This board covers all neurological disorders, including many posts with comments/questions about PD.
  

Are there great PD support resources out there that we've overlooked? Please add your own favorite links and suggestions in the comments forum!

Since we began this blog, we have been very gratified by the growing responsiveness of everyone who has found their way here.  We have been moved by many of your postings and heartened to see that a community is taking shape around our project.

Originally, our hope was to continue to our current pattern of regular weekly postings right up to our broadcast, which we had anticipated would be in late May.  But due to changes in the PBS schedule, it now appears that our actual broadcast will be moved to the fall of 2008, most likely shortly after the election.  Just to be clear: that's only our best guess at the moment; we could air sooner or later. As soon as we have confirmation, we will post the news here.

As a result of this delay, we've made a couple of decisions: first, we intend to keep this site live, and to continue posting, though on a somewhat more irregular basis than before now.  If you subscribe to the RSS feed or some of the other tools at the bottom of the comments pages, you'll continue to get notification when we post something new (and if you haven't subscribed, just click on the RSS button on the home page to get started). We'll continue to post videos from our work in progress, such as excerpts of interviews and extra content that may not fit in the final one-hour program.  We're also planning new ways to keep our blog content up-to-date and interesting, including inviting guest bloggers to join the discussion. And, as always, we welcome your own comments. In between our postings, we hope that you will continue the conversations you've started and bring new ideas and exchanges to this site. For starters, let us know how you think we can best utilize this space over the next few months.

We'll resume weekly postings about two months before our actual air date -- and if you watch this space, you'll be among the first to know when that will be.

Thanks again for participating, and we look forward to continuing the discussion.

-Michael Schwarz

Up until about ten years ago, Parkinson's was not thought to have a genetic connection. I remember being told not to worry after my father was diagnosed over thirty years ago -- the experts thought Parkinson's was not dependent on genes. But over the past decade, a number of gene mutations have been identified that can lead to PD. For someone like me with a parent who had Parkinson's, the genetic angle is particularly intriguing. But beyond that self interest, genetic findings may provide important new insights about all types of Parkinson's.

First, genetics may lead to early identification. If we can spot the possibility of Parkinson's sooner, we have the opportunity for earlier intervention. Second, genetics gives us a window into the disease right at the molecular level. Geneticists think this may help identify "drugable targets'" that could lead to treatments that are applicable not only to genetically-linked Parkinson's disease, but other forms of the disease as well.

We spent some time exploring genetics and Parkinson's at the Mayo Clinic in Jacksonville, Florida last fall. Preview some of what we learned by watching this video -- then chime in with your thoughts and reactions in our comments forum.

First, thanks to those of you who have left comments on this site. We want to use this space to create a dialogue about Parkinson's and what it means to patients, families and scientists. Thank you for getting the ball rolling!

Some of you wrote about how you reacted to the diagnosis itself -- Kathy wrote she wondered if the diagnosis was even accurate. That's one of the oddities of PD, that there really isn't yet a definitive test. It's all based on a neurologist's observations and assessment. I know my own symptoms are mild enough that some days I wonder if it's really true ... or at least joke that I have "Parkinson's Light."

But assuming the diagnosis is accurate, coming to terms with it is also a common struggle. When I interviewed Michael J. Fox the week before last, he commented that for a long time he kept waiting for the other shoe to drop ... until he eventually realized it already had. Accepting that fact allowed him to move forward. And we all know the extraordinary contribution he's made since.

In the end, for me at least, the trick is to achieve acceptance but to do so without resignation -- to come to terms with the condition but not be passive about it. (That's obviously easier for those of us whose symptoms are mild.) As several of you commented, this is where exercise can really help. Not only is there increasing evidence that exercise helps combat physical symptoms, it also allows you to feel like you can take charge. And taking charge, in the end, is the challenge for all of us.

But what do you see as the challenges? Use the comments link at the top of this post to let us know what struggles you face and how you deal with them. We'd also love to hear your reactions to our video posts. Are we getting it right? And finally, don't forget to check back for new posts and comments in the weeks ahead. 

Contributed by Michael Schwarz:

When you first get a diagnosis like Parkinson's, it's easy to spend a lot of time poking around on the Web. Not only is there a glut of information out there, there are all sorts of organizations. With Parkinson's, for example, there's the National Parkinson Foundation, the Parkinson's Disease Foundation, the American Parkinson Disease Association, the Michael J. Fox Foundation and the Parkinson's Action Network ... and I'm no doubt leaving out a few.

Today I've been taking a closer look at the Michael J. Fox website. While I've talked with people at the foundation a number of times in the course of our production, I have a particular reason to bone up on their work this morning: I'm interviewing Michael J. Fox tomorrow. It's been 10 years since he went public with his diagnosis and eight since he began his foundation. The whole reason for starting the foundation, Fox says, was to make a difference in the lives of patients now. His view is that our biomedical research system is broken, that it takes way too long to get from research concept to patient solution. As he notes, "I did a search on PubMed and there were 15,000 citations about Parkinson's over the past seven years. But I'm not tying my tie any faster."

So far the foundation has pumped $115 million into their research efforts. And while we all hope their efforts and those sponsored by other organizations eventually will lead to a cure, it's worth remembering that figuring out a way to cope with life's little challenges -- tying a tie, buttoning a shirt -- can make all the difference. I'm looking forward to hearing more about the difference Michael J. Fox and his foundation are trying to make from the man himself, and we'll post some footage from the interview in the weeks ahead. In the meantime, check out this U.S. News profile from last November.