Parkinson's Disease: A Family History Parkinson's disease is part of journalist Dave Iverson's personal history: His father had it, his brother has it and he has it. Now, a new PBS "Frontline" documentary, My Father, My Brother, and Me chronicles Iverson's attempt to understand the disease.
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Parkinson's Disease: A Family History

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Parkinson's Disease: A Family History

Parkinson's Disease: A Family History

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This is Fresh Air. I'm Terry Gross. President Obama is likely to lift the Bush administration restrictions on federal funding for embryonic stem cell research. Parkinson's disease is one of the conditions that could potentially see a medical breakthrough from stem cell research. There are also other approaches being investigated to prevent, cure or treat Parkinson's that could have implications for other diseases.

On tomorrow night's edition of the PBS documentary series "Frontline," my guest, Dave Iverson, reports on this research and shares his own story. Dave's older brother has Parkinson's. Their father, who was diagnosed in 1971, died of complications of the disease. Dave got his Parkinson's diagnosis in 2004. He's been a radio and TV producer for over 30 years. He produced tomorrow night's edition of "Frontline" with Michael Schwartz.

Dave Iverson, welcome to Fresh Air. Let me ask you to describe what Parkinson's is.

Mr. DAVE IVERSON (Public Broadcasting Producer and Anchor): Well, the most common manifestations of it are in movement. It's a disease that affects how you move. And it starts when you notice something sometimes quite small. It might be a finger that wiggles and you can't really get it to stop. It might be you notice that an arm doesn't swing quite the same way or that your handwriting has changed. And what's going on inside the brain is that the brain is no longer making a particular neurotransmitter called dopamine to the right amount, and it's the neurotransmitter that sort of signals your body to do what you want it to do. And so things that are normally unconscious, like having your arms swing when you walk, start not happening in quite the same way.

But we're also learning now - speaking of things that have changed in our understanding of the condition - that there are other factors of the disease that we never really knew before. For example, many people with Parkinson's lose their sense of smell, and that that may well be an early warning sign. Many people start having sleep disturbances before other things show up.

One of the tricky things about Parkinson's is that the disease is well in motion before any of these symptoms first become clear. Michael J. Fox likes to refer to it as a disease of lagging indicators because a lot has happened before you first notice it.

GROSS: As you point out, there's different problems that often present themselves as the first symptoms. What were yours?

Mr. IVERSON: Well, the first thing I remember noticing was this odd buzzing, tingling sensation in my left leg and to some extent my left arm. I used to feel that my cell phone was vibrating, and I'd reach for it and then I'd find that there was nothing there. Sometime along that same period of time I noticed that I didn't think that my arm was swinging quite the same way when I jogged or when I walked. But they were very mild, and I think most people probably wouldn't have thought much of it. The only reason I really did was because of my family history. So my antenna was sort of up, and that probably is a good thing because noticing it early on and doing some things that perhaps can slow the progression of the condition are really useful. But I think I only noticed those things because I'd seen that story before.

GROSS: Since you've witnessed Parkinson's in your father and now in your brother, was your diagnosis, do you think, any more or less frightening because you've already seen the disease close up?

Mr. IVERSON: You know it happens. You know how the story ends. And so, remembering that, remembering what my dad's life was like, particularly the last five to ten years of his life, you know where that's going to go. And so, sure, you have a picture in your head about what that experience may be. But for me, I also knew enough because I had looked into it some, given both my brother and my dad's condition, that it can proceed in many, many ways, that it's a really idiosyncratic condition, that in one person it progresses one way, in another a different path is followed. And so I also could tell myself, well, it may not go exactly that way. There may be things that can happen.

And because it is so slow moving and slow advancing, you feel like to some extent time is on your side and that great breakthroughs may still happen. So, yes, I had a very vivid image of my dad when my doctor first said that he thought that's what was going on. But I also, fortunately, knew enough to know that there may be things that can still happen, and I still believe that very much to this day.

GROSS: Since your father and brother have both had Parkinson's, you must be particularly interested in the genetic connection, and I know you researched that for your "Frontline" documentary. What do we know so far about the genetic connection? Have scientists isolated a gene that could be called the Parkinson's gene?

Mr. IVERSON: Well, there are now six genes that have been identified and various mutations within them, so the number of mutations is even greater than that. But there are about six genes that are in play, and they come about in different populations for different reasons. And that's news, you know. That wasn't thought. I remember talking to my dad's neurologist, you know, decades ago, and him telling me, well, it's not familial. There's no genetics in this. You and your brothers don't need to worry. And that was the prevailing wisdom for a very, very long time.

So it's new, but it's also exciting in an odd way because it gives researchers a kind of ready-made target to fix the condition. If they know what goes wrong in a particular gene and if they can figure out a way to fix it, then in essence you could fix the disease before it even starts. So ideally, we'll get to the point where you could take a test, know that you have this gene that could make things go wrong for you, take a drug that fixes the gene, and you'd stop the disease before it even starts. So there's - while it's of course for families like mine a cause of real concern, on the other hand, it's also cause for great optimism and promise. It may be something really unlocks some of the secrets to the disease.

GROSS: Now, would stem cell research figure into the genetic connection?

Mr. IVERSON: Not so much. The stem cell promise is that because embryonic stem cells have the capacity to become any tissue in the body, the idea with Parkinson's - and that's why it's often mentioned whenever you read stories about embryonic stem cell science - is that you could train a small particle of these embryonic stem cells, tiny cells, to become what goes missing in Parkinson's. They could become the dopamine neuron that's missing in Parkinson's. You could implant those in someone's brain, and you'd be able to replenish the dopamine supply. So it's a different route toward fixing the disease than the genetics that I'm describing.

How it could play in, on the other hand, is that part of what people are excited about with stem cells is that you can essentially recreate the disease in a dish, as one researcher told me. You could take a gene from someone who might have Parkinson's caused by genetic reasons and then put that in a dish and study what happens with those tissues. So you'd have a much keener sense of what's going on.

So the promise for embryonic stem cell science for Parkinson's and many other conditions is enormous, but the more we learn about the disease, the more complicated it becomes, so that if there are other parts of the body that are involved, like for example your sense of smell, which is true for many people with Parkinson's, it may not be enough just to fix the dopamine supply. There may be other things that are going on.

But there's huge promise, I think, for what can happen with embryonic stem cell science, not only for Parkinson's, but for many, many other conditions as well.

GROSS: President Obama is likely to reverse the limitations that President Bush put on federal funding for stem cell research, and I wonder how much of a setback you think the past eight years have been for stem cell research?

Mr. IVERSON: Well, scientists, I think, would all say with near unanimity if not complete that it's been a serious setback because they haven't been able to really do the kind of work that they'd like to do. What President Bush did was to restrict the number of stem cell lines that were eligible for federal funding to just those lines that were in existence as of August 2001.

So new stem cell lines that were created after that, you couldn't do research using federal funds. And it set up this sort of odd situation. I had one researcher tell me, for example, that he had been in labs where you'd have duplicate sets of equipment. You'd have equipment where they were working on stem cell research that could receive federal funding on one side of the lab, and duplicate equipment on the other side for stem cell lines that were not eligible for federal funding. And they even had that crime tape, you know, that yellow tape separating the two so that some sleepy researcher in the middle of the night wouldn't get the wrong stem cells in the wrong equipment. So, in lots of ways it made the research task that much more complex.

It also, some scientists would tell you, dissuaded people from going into the field. One researcher told me that one of his biggest concerns is that young people growing up in this time, young scientists who came of age during the last decade, really didn't want to pursue this line of inquiry because they just thought it would be too difficult.

And we also saw that a number of researchers left. They went to other places that were more open to stem cell research, whether that was in Europe or in Singapore. So I think there was definitely - I don't think you can argue many things about that decision and the morality and ethics and politics of it, but I think it's pretty clear that it had a negative effect on the way in which the field progressed.

GROSS: In your documentary, the journalist Michael Kinsley, who has Parkinson's, says that if there's some kind of stem cell research breakthrough that happens but it's too late to help him, he's going to be really angry at President Bush for holding back so much of the research for seven or eight years during the Bush presidency. Do you share any of that anger? Do you take it personally that Bush didn't allow federal funding for so much research that could have been happening during his presidency?

Mr. IVERSON: Well, I remember it going back even further when under the first President Bush there was a hold on at that time fetal tissue transplant research, feeling angry because of the impact that that might have on my dad. For people with conditions like Parkinson's, it's not time neutral. You know, the clock's ticking, as Mike Kinsley says in one of his comments and in his writing. So, yes, you have the sense that time is advancing, and let's get on with it. So the sense that there has been a slowdown in the research over a period of time for most people with Parkinson's is extremely frustrating.

Having said that, I also understand the moral objections that some people have. As Charles Krauthammer, the conservative columnist who has a spinal cord injury says in the film, the fact that it could be a human being, that it has that potential, means that a frozen embryo is not just, as Krauthammer says, a piece of appendix. So I understand that dilemma, too.

You know, I was raised Catholic. I still attend, though not every Sunday, the Catholic church. So the teachings of my church are opposed to embryonic stem cell science. So for a lot of people, it's a dilemma because your faith might be telling you one thing, and your body is telling you another. In the end, I personally come down on the side that the greater good favors what could go forward with embryonic stem cell science.

GROSS: My guess is Dave Iverson. He's the correspondent and co-producer of tomorrow night's edition of the PBS series, "Frontline." It's called "My Father, My Brother, and Me - Life with Parkinson's." More after a break. This is Fresh Air.

(Soundbite of music)

GROSS: If you're just joining us, my guest is Dave Iverson, and he's the correspondent and co-producer for a new "Frontline" documentary on Parkinson's disease. It's called "My Father, My Brother, and Me - Life with Parkinson's Disease." Iverson was diagnosed with it, although, you know, happily it hasn't progressed very far. His father had it, and his brother has it as well.

There's some interesting research being done now on environmental and chemical triggers that might set off Parkinson's. And you discuss a case in your "Frontline" documentary that's really fascinating, and it had to do with a case of tainted heroin that seemed to be setting off Parkinson's disease in people who had used it. Would you tell us about that story?

Mr. IVERSON: It's a fascinating story, and it actually is a story that I had reported on once before more than 20 years ago. It's a story about a phone call, really, that happened one day, a phone call that went to a neurologist by the name of Bill Langston, who was at the time a neurologist at Stanford University. He got a call to go see a patient who really couldn't move, was clearly suffering from some kind of neurological condition. And he had all the manifestations of mini-aspects of severe Parkinson's disease because in the end, you almost can't move at all. But he was young, and this had happened seemingly overnight. So it didn't make any sense. How could this person have instant Parkinson's disease? How could a young person have instant Parkinson's disease?

And what they determined after some exploration and a number of other patients who then came in with this same manifestation, was that they had all taken a particular street drug, a kind of synthetic heroin called NPTP. And that had killed exactly the same brain cells that happen in Parkinson's. It had shut down the dopamine supply so that these people did indeed have a form of instant Parkinson's triggered by this toxic chemical, NPTP.

What became so significant about that story is that through analysis of what NTPT was, they learned that it was almost chemically identical to a widely used herbicide, paraquat. And that set forth a whole new arena of inquiry because if something that was widely used like an herbicide could somehow prompt Parkinson's disease, then you had to wonder what else, you know, was out there? What else could do this, could encourage the disease, if you will? And it became a major focus and still is a major focus of research to this day.

There are new studies going on right now looking at the Central Valley of California, analyzing where certain pesticides have been sprayed and trying to make a correlation between those sorts of toxic exposures and the percentage of people who have Parkinson's. And it does appear that there is a relationship, that you have a greater chance, at least, of having Parkinson's if you have had those sorts of exposures.

So, there are lots of things that are in play, and it all goes back to that unfortunate person who took this synthetic form of heroin and wound up not being able to move.

GROSS: You said there's an old saying that goes, genetics load the gun and the environment pulls the trigger. So the fact that Parkinson's is a genetically passed on disease and the fact that chemicals might set it off aren't contradictory.

Mr. IVERSON: No. There are many paths to Parkinson's. In some people, there appears to be a genetic mutation that triggers the disease, and it's just that genetic mutation. In the majority of people, though, at least right now, geneticists would say, well, we just haven't found all the genes yet, and that's why we haven't seen a genetic connection in everyone. But right now, that pure genetic connection really only makes up a fairly small percentage of the disease, perhaps between five and ten percent, although in some countries it's a larger percentage of the disease.

The rest are either triggered by some toxic exposure or perhaps a connection, as you suggest, in that saying that one of the researchers in the film says, which is that genetics loads the gun and chemicals pull the trigger. And what that would mean is that you might have a gene that would make you vulnerable to Parkinson's, but you'd be fine, you'd be totally fine. You'd go through your life never having Parkinson's disease unless you had some chemical exposure. So in that way, there may be a way in which genes and chemicals work hand-in-hand to create the condition.

GROSS: Another interesting part of the research has to do with exercise, how exercise might slow down progression of the disease, and this isresearch that was done with monkeys and a treadmill. Would you describe the experiment?

Mr. IVERSON: This is research being done by Dr. Judy Cameron at the University of Pittsburg. And what she is doing is taking a group of monkeys and dividing them so that you have a group of monkeys that learn how to use a treadmill, and then there's a group of monkeys that just sort of sit around and watch. So you have the movers, and you have the couch-potatoes monkeys. And then after a certain amount of time, both the runners on the treadmill and the watchers are given a mild dose of NPTP, the same chemical that caused Parkinson's in those - those drug addicts, and then they see what happens.

And what they're seeing so far is that the monkeys that have been working out fair much better than the monkeys that have just been sitting around. That they can continue to use their limbs, they can continue to use the treadmill in a good way, and even more significantly, that their brains look different. They - they've done PET scans, P-E-T scans of the brains of both of the monkeys that are the runners and the watchers, and their brains look different. So that if you see the PET scan of the monkeys that have been running ,it looks virtually normal. Their dopamine production has been much less affected than the monkeys who have just been sitting around doing nothing.

So you know, it's suggestive. It's obviously not conclusive. It's animal research, but it makes you think that something might be going on there, that actual physical exercise could be protective.

And what they're also now working on is determining whether or not once you give the injection, if you keep working out, does that continue to slow the progression? Which, of course, is the finding that would mean the most to people like me. And they're finding that that's the case as well.

And I think that when you have a condition for which there is no cure, you want to know that you can do something. You want to know that you can still be in charge of your own body in some way. And that's as much mental and emotional, I think, as physical, as anything else.

GROSS: No doubt you're exercising a lot now?

Mr. IVERSON: I am. I am. I mean, it's quite the motivator, Terry. I mean, you know, anyone who exercises knows that there are days when you're tempted to take a day off, and that's not to say that I don't ever take a day off, but I'm pretty disciplined about it. And as I say, it may or may not, who knows whether definitively it's making a difference in how I'm progressing, but I believe it does. And you know, that's - that's probably enough.

GROSS: Dave Iverson will be back in the second half of the show. He's the correspondent and co-producer of tomorrow night's edition of the PBS series "Frontline." It's called "My Father, My Brother, and Me - Life with Parkinson's." I'm Terry Gross, and this is Fresh Air.

(Soundbite of music)

GROSS: This is Fresh Air. I'm Terry Gross, back with Dave Iverson. He's the correspondent and co-producer of tomorrow night's edition of the PBS series "Frontline." His edition is about Parkinson's disease, the latest research, and what it's like to live with the disease. His father was diagnosed with it in 1971 and died of complications. Dave's brother was diagnosed with Parkinson's in 1992. Dave got the diagnosis in 2004.

Since one of the underlying issues with Parkinson's is a shortage of the neurotransmitter dopamine, how come you can't just take dopamine pills and be non-symptomatic?

Mr. IVERSON: Well, you can take a medication that helps make up for the fact that your dopamine loss is there. Because of something called the blood brain barrier it's difficult to make that all work. But there's a standard medication known as Sinemet that essentially functions as a replacement. In time, though, it doesn't work as well, so what happens for most people is that the medications actually work very well - and that was true for my dad, it worked very well for him. And he was - Sinemet just came into common use right about the time he was diagnosed in the early 1970s. So it works well, and works well for most people for a good while. But then it doesn't work as well, or you need so much that the side effects from that medication are as problematic as the disease itself.

So there are medications that make a real difference. I'm on a medication called - Rasagilene is the generic medicine that in part helps, we hope and think, to slow down some of the progression for the condition. So, there's a lot of things that can be done in the early days with Parkinson's. It's just that it doesn't last forever.

GROSS: Now, there's also a brain surgical procedure that can be done for Parkinson's. What's that?

Mr. IVERSON: Well, there's something called deep brain stimulation or DBS, and it can be very helpful for people. It doesn't fix everything. It helps with some problems and not with others. You know, some people have problems with balance. Some people have problems with tremors. Some people have problems with rigidity and voice. There are a variety of symptons, and DBS can help with some symptoms but not with others. And again, it doesn't last forever. Usually people get sort of three to five years' usage before they go back to kind of where they were.

But for someone with Parkinson's, you know, at a fairly advanced stage, you'll take that three to five years. You know, that's a window you'll grab onto, so it's a long ways from being anything resembling a cure, but it can be quite helpful for reasons, I might add, that researchers still don't fully understand. It's sort of a mystery, actually, as to why it even works.

GROSS: Well, back to your family. You say that the hardest thing for your father when he had advanced Parkinson's was not being able to talk, which happened toward the end of the disease for him. He used to work on radio. He did stuff for the Lone Ranger.

Mr. IVERSON: Right.

GROSS: What did he do on the Lone Ranger radio series?

Mr. IVERSON: He was a bad guy. He was an outlaw on the early Lone Ranger. He got his start working in radio in Buffalo, New York where he grew up. The Lone Ranger actually started there, and Fran Striker, who wrote the Lone Ranger and also the Green Hornet, was from Buffalo, and so they started there, later moved the shows to Detroit. But he worked on both the Lone Ranger and the Green Hornet and did a variety of other things. In fact, I still have in my closet the tuxedo that he used to wear on radio when he would be the MC for live orchestra performances in Buffalo.

So that's what he did early on in his life, and voice was central to who he was. He later left broadcasting and became a teacher, subsequently a professor of education at Stanford University. But performance and voice and words were absolutely central to who he was. And as my mom says in the film, losing that ability to communicate, for him, I do think was harder than not being able to walk across the room.

GROSS: One of the scariest things about any disease is that it stands a chance of depriving you of the thing that you think most defines who you are or the thing that gives you the most pleasure in life. Do you allow yourself to worry about that?

Mr. IVERSON: Yeah. I mean, as you and I are talking here on this medium that we both know and love, you can't help but think about that. That's been part of who I have been in my life, too.

GROSS: You do a radio show.

Mr. IVERSON: I do a radio show. I host a radio show for KQED Public Radio here in San Francisco, and I've worked in broadcasting for the past 30-plus years. So, yeah, it's central to me, too. But I don't really - it's interesting. I don't think about, gee, someday I won't be able to do this. I guess I choose to believe that I'll be able to do this for a very long time and that's what I want to focus on, and I want to focus on those things that matter the most to me in life, not only in terms of work but in the rest of my life as well.

And that while voice is central to that, being able to communicate is central to that, I'll hold onto that, I think, for a long time. And when and if I can't, then I'll find another way to do what matters most to me. But I don't obsess about that. I don't think about that when I sit down to talk to you or when I sit down and I'm on the other side being the person asking the questions, which is, of course, most of what I do. I don't think about, gee, some day I won't be able to do this.

GROSS: I'm wondering if you have children since we've been talking about the genetic link to Parkinson's.

Mr. IVERSON: Yeah.

GROSS: And you know, if you're worried about, you know, the next generation or nieces or nephews.

Mr. IVERSON: Yeah. Yeah. I do. I have a 30-year-old daughter, Laura, who lives in Connecticut with her husband Kevin. And I have two nieces and a nephew, my older brother's son and daughter, and my younger brother's daughter. And sure, we think about that - all of us think about that. And I've talked to all of them about this and about this making this film because in some ways it is a sort of family enterprise, and I was asking them to be public, in a way, about that. And with the prospect for increased genetic testing, it does raise lots of questions about how much do I really want to know?

Right now, it's my daughters feeling as well as her cousins that, you know, they know enough. They know there are risks out there. They know that with their dad and an uncle and a grandfather that there might be something brewing, but they don't necessarily need or want to know more than that. I think everyone, again, has a different answer to that. But sure, you worry about it.

But I'm also so proud of my daughter because among other things, she teaches yoga and palates and teaches a course for performers at Fairfield University in Connecticut. But she's also now developing on the side an exercise class for people with Parkinson's, bringing her own skills as a teacher of movement to people for whom movement is a challenge. So that gives me, you know, great joy and great pride.

GROSS: Yeah, that sounds great. Well, Dave Iverson, thank you very much for talking with us.

Mr. IVERSON: My pleasure, Terry. Thank you.

GROSS: Dave Iverson is the correspondent and co-producer of tomorrow night's edition of the PBS series "Frontline." It's called "My Father, My Brother, and Me - Life with Parkinson's."

Coming up, we listen back to an interview with saxophonist Hank Crawford. He was the music director of the Ray Charles band before going off on his own. He died Thursday at the age of 74. This is Fresh Air.

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