From Obstacle to Opportunity: David Begnaud on Living with Tourette Syndrome

Episode Transcript

Dr. Correa:
From the American Academy of Neurology, I'm Dr. Daniel Correa.

Dr. Nath:
And I'm Dr. Audrey Nath.

Dr. Correa:
This is the Brain & Life podcast.

Dr. Nath:
When Hurricane Maria hit Puerto Rico in 2017, David Begnaud was on the scene doing a ton of reporting for Puerto Rico. Where were you then?

Dr. Correa:
Oh man, I was trying to find out information about how my family was doing. I mean, I have family throughout the whole island. Unfortunately, many people had to evacuate or were stuck in their houses. Thankfully, my family was okay, but so much changed in the island after that.

Dr. Nath:
I remember watching the news pretty intently at that time as well and remember seeing David Begnaud, who was a veteran journalist, doing a ton of reporting then. And so I got to talk to David Begnaud, not about this particular news story, but about his own neurological condition. I didn't realize this at the time, but David Begnaud has Tourette's syndrome.
Right before we recorded the episode with David Begnaud and our conversation, the night before, actually, he had gone viral on Twitter in telling a story about his Tourette's syndrome and what it was like to have his tics while in a very confined space of an airplane. The person next to him then instead of ignoring him or maybe asking a question about if he was okay, she took pictures of him and moaned and groaned and twisted and he felt that humiliation that he felt as a child. But instead of acting out or yelling, he wrote because he writes and he tweeted this from the sky, and it really resonated with a ton of people around the world.

Dr. Correa:
Yeah, I mean, it's such a challenge, the stigma of different neurologic diseases and especially the ones that have such a visual impact. It's amazing that he opened up so vulnerably to the community to share his own experience. And it's unfortunate that more people just don't ask for some more information or accept the reality that not everybody moves and operates the same way.

Dr. Nath:
In the same way, for sure.
Our guest today is veteran journalist David Begnaud. You may have seen him on CBS Mornings as the lead national correspondent. And his reporting on Hurricane Maria in Puerto Rico in 2017 earned him the prestigious George Polk for public service.
So he's traveled around the world to bring us reporting and he's had a storied career, but something that his viewers may not have realized is that David has Tourette's syndrome. And Tourette's is a neurological condition that we largely see in children, but we also can see in adult where there are involuntary tics, which can be motor tics such as shoulder shrugs. They can be vocal such as with grunting or even sometimes words. And with David's, he will tell us a little bit about this in his own words, but he has some tics including a nose sniff, which we definitely see with Tourette's. And despite this and these involuntary movements, he has more than excelled in journalism. And something that I thought was awesome is reading about him, that his parents made sure that he never use the Tourette's as an excuse for not succeeding.
Thank you so much for being open and vulnerable with your experiences to our audience and welcome to the podcast.

David Begnaud:
It's a pleasure. Thanks for having me.

Dr. Nath:
I just want to start. So you were a kid when you first started noticing these, you were diagnosed at around six. What did you think was happening or what were your parents thinking was happening back then?

David Begnaud:
If you look at the family videos of me as a child, rambunctious and as normal as can be, you will see a lot of eye tics. So the blinking. And so that was, I think most noticeable to my parents. I also had some neck tics turning my head to the left and the right, maybe making a few noises here and there. And so God love them, they took me to see a doctor in Opelousas, Louisiana, Dr. Tom Jones. Why I remember his name, I don't remember. But he diagnosed me with Tourette's and I am simply grateful that in 19, whatever that was, the mid '80s, that there was enough awareness of what Tourette's is to make what was the right diagnosis, and thereby started a journey that was both exhausting, depressing, not in the way that we know it's suffering from depression, but depressing in that they use blood pressure medication to treat it.
And it led to me falling asleep in school. I had to repeat the fifth grade. It led to social isolation. It led to the kids saying, "Miss so-and-so, David's sleeping." And she'd say, "Honey, just let him sleep. He's less disruptive if he's sleeping." And so I am on blood pressure medication today, and I don't know that I've disclosed that. But I, in some ways, have a little bit of unresolved resentment because I think that why do you put a six-year-old on blood pressure medication? And is my body dependent on that blood pressure medication because I was put on it at such an early age? But be it as it may, that was one of the treatments that they used in addition to Wellbutrin and other things that they tried.
I'm not on medication. I think would it help today? It probably would insofar as kind of taking a little bit of an edge off. My Tourette's had, I think around the age of 22, 24, seem to lessen as I matured. But as I've gotten closer to my late 30s, they've made a bit of a rebound and my friends are back. And so kind of like riding the waves, I guess you just move with it.

Dr. Nath:
That's interesting because as a pediatric neurologist, I'm usually following people until their 20s and don't usually find out what happens in the late 30s. So that's actually kind of interesting that there can be a waxing and waning effect over the lifetime. I'm sure every person is different.
There are patients that have described that when they are on stage performing or maybe playing their musical instrument and really in the zone, that sometimes they don't notice them as much and might have a whole bunch afterwards. And there may be some interesting mechanisms for this, if using kind of more higher level frontal parts of the brain may end up suppressing some of these movements essentially. Do you notice that when you are in your groove and reporting or anything like that, that there's fewer of these?

David Begnaud:
When I was younger around the age of 18, I was anchoring a newscast in my hometown of Lafayette, Louisiana and my dad was there, and he remarked that when the camera light went on, my ticcing stopped. And so that was sort of always an example that we use to illustrate what you just said. However, I would say in recent years, I am more susceptible to having my tics amplified by stress, by other people asking me about it, by being around other people who have Tourette's and watching and hearing them tic. I don't know if as an older person, I'm more aware of them than I was when I was a child, but I have the turning to the side of the neck, I have this lizard thing with my tongue, I have the brief sort of quiet exhaling out of the nose. And sometimes these can get ramped up to where I notice them more often than I remember noticing them in my earlier years.

Dr. Nath:
Okay. That's interesting that there may be some kind of shifts in...brain development might be the right word to use as a grownup, but I think the brain is still developing and changing over time, just not as much as when you're a little kid. You were reporting as a teenage reporter in Louisiana, right?

David Begnaud:
Yeah.

Dr. Nath:
An unpaid teenage reporter, and that's how you got started?

David Begnaud:
Yeah, I started very early. I had a woman who believed in me despite the struggles with Tourette's. I think in so many ways, Tourette's complicated my ability to make friends, on top of the fact that I was gay, but that made it difficult to have friends. And so what I did was adults were my friends and adults treated me like a young adult, and that matured me fast. I was the kid who just wanted to finish with childhood quickly.
And so in many ways I got lost in what were my dreams, which I'm very thankful and I'm living the dream I had as a child thankfully, I'm proud to say. I think my Tourette's is part of what has given me the discipline, the determination, the drive, the persistence, the insistence, the resolve, the courage. Everything I mention I attribute to that. I also would say to you that if you were to ask me, "David, what is your secret sauce? What makes you special?" I would say it's my empathy. And my empathy is a product of my pain, and my pain is a product of my Tourette's and being gay, all of this as a child. You give all of this to an adult, and it's one thing. You give all of this to a child, and it is a completely different, in my case, debilitating, traumatizing experience.

Dr. Nath:
Going through school in Louisiana, being different in several ways, I'm curious, in all of that that you were experiencing as a kid, what was it about journalism? I'm just curious, was there someone in particular that you were watching that you're like, "I want to do that," or was it just the storytelling in general?

David Begnaud:
I was a bit of a tattle-tale as a kid, and so I like to say the reporting is just paid tattle-taling. No, I'm a storyteller and I've always been insanely curious. And so when I was a six-year-old child, I was allowed to watch an hour of television a day so I'd split it between a half hour of The Price Is Right and a half hour of the six o'clock news. And this is as a six-year-old boy.

Dr. Nath:
Yeah. My six-year-old does not do that.

David Begnaud:
Exactly. I was just so into the news and wanted to do it. I love getting the scoop. I love telling people to scoop. That's what I always was.

Dr. Nath:
That's relatable actually.

David Begnaud:
Yeah.

Dr. Nath:
I just want people to hear that in case there's any kids out there listening that you can have a dream as a little kid and then make your way there. I know that's not completely related to Tourette's, but I just want everyone to hear that no matter how big that dream is. So you mentioned that you were trialed on medications. And even now, decades after you were diagnosed, yeah, we do still use some of those medicines I think you were referring to, such as clonidine, which can lower blood pressure. There's a few others. There's also other medications that have some pretty significant side effects that are used as antipsychotic medications that can also be used in really severe Tourette's. So how did you process that okay, my way forward here is either just to have these tics and continue to be ostracized or to be trying some of these things that have some really heavy duty side effects? What did your parents think about that?

David Begnaud:
I had the clonidine patch that I would wear, and they would watch me fall asleep, and they would see it. And that's why I had to repeat the fifth grade. And I changed schools four different times because I was so disruptive with my Tourette's and all that. But despite the way I describe it, I had and still have what I would call a mild case, a persistently mild case. And so I was never on the antipsychotic medication, and it was kind of like, you can take it or leave it, my parents opted to take it. And sadly, medicating me made life easier for everybody else, but it made me, in many ways, a walking zombie. So I'm not sure that to the satisfaction of others, if it actually amounted to a gratifying experience for me, a self soothing experience for me.
In many ways, I mean, sleeping wasn't helping anything. We needed to help in the moment when I was actually there. That's not to fault anybody. I want to be clear. I'm just saying that was the process. It was clonidine then it was Wellbutrin, maybe it was Lexapro for a minute. And then I think I was off medication around the age of 18 by choice. And I will deal with my tics today through meditating in the moment, through removing myself from a stressful experience. And in other ways, to be honest with you, allowing myself to simply be, and what that means is sometimes ticcing on TV and I'm okay with that. I'm okay with that.

Dr. Nath:
How did that go over initially as you started getting bigger and bigger and bigger jobs? Was that something that you discussed with the producers, like, "Hey, this is me and this is it. Don't go out of your way to edit this out." How did that work?

David Begnaud:
No, I never really had a conversation with anybody. And again, back in the day, I seemed to remember that they were never visible on tape, on camera. But then within the last five years, they have become quite visible. I'm not sure if that's me just really settling into who I am and being okay and proud of it because I've had a demonstrable uptick, I don't know. But a few years ago, there was an opportunity for me to basically disclose that I had Tourette's with the idea being I want to provide a space for people to see me and say, "If he can be and if he is, there's hope for me," because I know what that would've meant to my younger self. So that's why I did it.
It was very freeing for me.In the attempt to help other people, I also gave freedom to myself. And so people who had no clue, found out. People who saw something but didn't know what it was, came to have a word to define it. Listen, I am the biggest evangelizer in saying to you that vulnerability is how souls connect. You see, I cannot relate to going to medical school, you can't relate to being on television, but I can relate to struggle and I assume you've had some, right?

Dr. Nath:
Yeah.

David Begnaud:
So we can admire each other's successes, but we relate to one another's struggle. And so in the relation in me opening up about it, I have become more relatable to the audience, right?

Dr. Nath:
Absolutely, yeah.

David Begnaud:
And it has given me such peace, and I've done, I think three stories on Tourette's. I did a story recently about a kid who had deep brain stimulation implanted in his head at 17 years old, a police officer in Minnesota who's having severe side effects with the medicine they're trying, and he's looking at deep brain stimulation as well. I've used it as a way to not only be honest about myself, but to educate, inform, provide a safe space for. I'm proud of the reporting we've done around Tourette's, I really am. I mean, I just saw a video the other day about this guy in Scotland who is a remarkable singer who has Tourette's. There's a video that just popped online and everybody's sending it to me. "David, have you seen it? David, have you seen it?" So I sent it to my producer.

Dr. Nath:
Using your platform in that way. And I will say it's not just in the stories that you've done, but even on Twitter. This popped up on my feed that you spoke about your own experience, I think this was yesterday, about being in an airplane and having tics and what that experience was like and how it felt for the person next to you to be staring, to be annoyed, and to give us a glimpse into what that feels like.

David Begnaud:
So I was on a flight to New Orleans, and I was sitting in the front of the plane in the first seat, and I had the aisle seat, and there was a woman in the window. Over the course of the flight, I was ticcing, and one of my tics is the exhaling out of my nostrils. I think it's very subtle, but if you're sitting on the side of me, you hear something. Initially I gave her the grace, and I thought, "Oh, she probably thinks I have COVID, right? So she took out a mask and used ... Okay, no problem." I wasn't blowing my nose, I wasn't wiping my nose. Okay, but I had my earbuds in, my sunglasses on.
Over the course of this three-hour flight, she devolved into having a bit of a conniption fit, and she started to take pictures of me. She was twisting in her seat. She'd go up to the bathroom, she'd come back, she would make faces. She would sort of wave her hands at me, and I acted as if I was ignoring it, but I could see it out of my peripheral vision, and I could see she was sending the pictures and texting them to people.
I want to say this to you about that experience. That experience for me was the first time since I was a child that I felt humiliation and I started to question who I was, and I want to explain what those feelings were like and what they did to me. As a child, I remember feeling humiliation and wanting to run or building a wall and just putting on a pretty face in the moment, a big smile. As an adult, we can walk away from uncomfortable situations. I couldn't because I was on an airplane. And so my first feeling was, that's okay, it'll be fine, I'm going to ignore her. Then my next feeling was, I'm really feeling humiliated and this really doesn't feel good. And then my next feeling was hearkening back to childhood. And when we are humiliated, we want to lash out.
And of course, now having the emotional responsibility and literacy as I do as an adult, I knew that that wasn't the right thing to do, but I had a moment where I wanted her to feel the pain I was feeling in terms of humiliation. I didn't know what to do and so I wrote, I did what I do, I told a story in the moment, and that was soothing to me. It was soothing for me to write that because I couldn't get away from her and I was feeling like that six-year-old who was being bullied at school, because that was my childhood 100%.
So it was quite a moment. I hope to never have that again. I'm being very honest with you, because these are human emotions and we should be honest and not lie about it or try and mask it. And then I finally arrived at, "Well, I'm going to put it in writing." That was soothing to me, and there's been such an outpouring of love that I will end what I'm telling you by saying this, vulnerability is the blessing we give to each other. It is a blessing to someone else for them to experience your vulnerability, remember that.

Dr. Nath:
I love that. I mean, you're using your platform in a way that... Yes, I saw there was a number of really high profile people that were giving support, but there's also kids and families and little people out there that see your feed and will say, "Oh, wow, I've had that happen to me." And to see that from you is huge. I didn't realize that you wrote the tweet in that moment,

David Begnaud:
In the moment, yeah.

Dr. Nath:
Yeah. Thank you for sharing that. It's also interesting that you harken back to what the mindset was like as a kid, but with the insight that you have as an adult. It's almost like you're kind of reparenting your former self. It's kind of what it sounds like.

David Begnaud:
And that is a blessing because what I don't want to do is erase or forget the past. You see, my awareness of the past pain is what continues to help evolve the empathy that I have today. Because again, you cannot have empathy toward another human being if you have not experienced some type of pain. So I don't want to act like a child, I don't want to have the emotional dependency on that pain, but I want to have it right on the side to where I can remember, hey, you remember that young man, right? And you remember how that young man would feel. Well, we know better today, and so we are going to do better. We are going to use it as an opportunity to create a conversation for other people.

Dr. Nath:
Oh, that's incredible. I mean, the things that you could not do when you were six, seven, eight years old, essentially. That you're telling that kid, "All right, kid, here's what we're going to do now. We're not going to cause a ruckus in the classroom or anything like that. Here's what we're going to do."

David Begnaud:
And Audrey, when I was a child, I didn't have the awareness, the literacy and the responsibility, thanks to maturity, to be able to say to myself in the moment, "Young man, this will be the tools that you use to have a successful life.

Dr. Nath:
You had no idea, right?

David Begnaud:
No. My pain, I wanted to get rid of, I wanted to run from, I wanted to escape. I wanted to have a perfect life. But now I look back and I say, my life is arguably perfect for me because of the painful lessons I learned and I can put into action today.

Dr. Nath:
I'd like to know, in addition to speaking out about these issues on TV and on Twitter, have you been having any liaison with any organizations for Tourette's? I'm just curious.

David Begnaud:
The Tourette Association of America is one of the most well run, impressive organizations I have ever been a part of. A shout-out to Amanda Talty, the CEO and the crew. Listen, they are the real deal. I have probably five to six people reach out to me a week from all over the country asking for some type of resource, and I direct them to the TAA. I have said to Amanda, "I don't have time to serve on your board of directors because that is a commitment that I cannot give you, but what I do have time to do is amplify, tell the stories of, be an ambassador for, and just be a face that you can rely on to help you. That's all."
There's all kinds of people seemingly coming out and talking about Tourette's. I'm like, "What is going on? Like all of a sudden." And I think it's what it always is. It's not that all of a sudden more people are being born with Tourette's. It's just that when you start speaking about something, it gives other people the light to come out of the shadows. That's what ends up happening.

Dr. Nath:
That's right, yeah.

David Begnaud:
When people say, "Oh, the news is so bad." I say, "The news has always been bad, social media just amplifies it. And you are more aware of it than you were before we had social media."

Dr. Nath:
I think so.

David Begnaud:
Right?

Dr. Nath:
I think so, yeah.

David Begnaud:
We're just more aware of people with Tourette's because when Billie Eilish talks about it to David Letterman, it becomes a headline. When David Begnaud talks about it, it becomes a headline. Well, then that's us using our platform as a public service, and I want to be a part of that.

Dr. Nath:
Something that you mentioned that I thought was interesting is that over time as an adult, you've learned that there's different strategies. You can try to remove yourself from a stressful situation. There's kind of different coping mechanisms and one of them, and I just thought this was interesting the way that you phrased it was just letting it be, because essentially sometimes by focusing on it or letting yourself get into a tailspin of, "Oh no, I've got these tics and this is bad," that they can get worse and into this kind of vicious cycle. And that's what some patients have described. So I thought that was really insightful to think, "Okay, sometimes I'm going to let these be and not let myself get into that tailspin."

David Begnaud:
And if you're listening to Audrey say, let it be, and you're thinking, what does that mean? Here's what it means to me. If I'm driving and I have a moment of awareness, I simply sit in that awareness and they start to power down, is what I call it. It sometimes can move to meditation, but I have just found a power in my own awareness of it that I can dial, just like you turn the radio down, that I can turn it down a little bit.

Dr. Nath:
I know you were busy, you were probably on your way to jet across the country and go talk to more people. Before I let you go, is there anything you would want to say to some kid out there that's having some tics and getting evaluated and their parents are scared? Is there anything you'd want to say to that family?

David Begnaud:
There are resources available to educate you. There are people who are more than happy to share their experiences with you. At the end of the day, this is only my experience, but Tourette's is more life altering than it is life-threatening. And I believe in more cases than not, people will say to me, it has been more of a blessing than a horror. And for me, sure, if I could take a pill and get rid of it, I would. But at the end of the day, it has fundamentally shaped so much of who I am that I don't know how I could enjoy what I enjoyed today without Tourette's. You take away the Tourette's and you have to take away all kinds of other Jenga pieces.
And so I just want people to know it gets better. It is not the end of your life. What I hope for you is that it becomes something that you are simply able to lose sight of. It's kind of like having tinnitus. You know tinnitus, people with tinnitus, they hear that ringing, but there is a moment where people with tinnitus will tell you, "I can focus on something else and I forget about the ringing in my ear, but if you ask me about it, all of a sudden hear it." It's kind of like Tourette's. My hope for you is that you can get to a place and a space where it's riding side-saddle with you, but it's not your hurdle. It's always going to be, it's always going to be, and you get to manage that relationship.

Dr. Nath:
Thank you. Thank you so much for joining us and being vulnerable.

David Begnaud:
Well, thanks for listening. It was a pleasure.

Dr. Nath:
Is there a neurological condition you want to hear more about on the podcast? We want to hear from you. You can call in any time and record a question at 612-928-6206.
Stay tuned in the next few weeks for episodes where we talk with people living with Parkinson's, epilepsy, stroke, and migraines, as well as some of the rare neurologic conditions like Charcot-Marie-Tooth disease.
To learn more about Tourette's syndrome, I'm joined by Dr. Michael Okun and he's the executive director of the Norman Fixel Institute for Neurological Diseases at University of Florida Health and the outgoing chair and professor in the Department of Neurology. He's done a bunch of research including neuromodulation and deep brain stimulation for movement disorders. Thank you for joining us.

Dr. Okun:
Oh, it's my pleasure, Audrey. It's great to be with you.

Dr. Nath:
Just to start, for our audience, we had a conversation with David Begnaud about his Tourette's, and we talked all about his tics and the experience he had on an airplane where someone was taking photos of him while he was having his tics and how that felt. But briefly for our audience, what do we mean by Tourette's syndrome?

Dr. Okun:
Yeah, so it's actually a great question and something that gets a little bit confused in the lay press and on TV shows and people will label folks with Tourette because they have outbursts and it's more than a little bit unfair. And so this recent story with David on an airplane really brings it home. And so let's talk a little bit, I think about what Tourette is. And so it is a brain problem, and this is a brain podcast, so that makes sense that we're together today, right?

Dr. Nath:
Yes.

Dr. Okun:
Audrey, it's all about the signals. And so if you do a scan or you look at the brain of somebody who has Tourette, it looks normal. So you order a scan, it looks normal. Well, there couldn't be anything wrong with them. That's a normal scan. But what it is the brain has a whole bunch of islands and they're all talking to each other and they're all signaling in various ways. These conversations are absolutely critical to what happens when you have symptoms of a neurological disease. And so what happens in Tourette is these conversations get scrambled or they're a little bit, let's say less than what would be the typical normal, whatever normal is. I'm not even sure what normal is anymore, but let's say that conversation is a little bit less than what we would expect in normal, and it results in these symptoms.
And folks with Tourette, they can have abnormalities with motor. That means they might blink their eyes, their eyelids, they may dart with their eyes in certain directions, they may jerk their head or their arm or their leg, but they can also have vocal things. And so the vocal "things" that they have can be all sorts of stuff. They can be making little noises and be put in the corner in the classroom because you're making noises, but you might not be able to control that or could be barking or grunting. Some of these tics can be complex, both the motor and the vocal tics.
So it's a syndrome, Audrey. And so folks with Tourette can also have obsessive compulsive things and they wash their hands a lot or count or have rituals. They may have attention deficit disorder, very common to have those traits with Tourette. Some can even have self injurious tics or depression and anxiety that are part of this abnormal conversation that's going on in the brain.
In summary, it's a syndrome that has to do with abnormal extra movements. They can be motor or vocal, but also behavioral issues, and you can't help it. You can't help that you're going to do these things. And only the minority of people have what's called coprolalia, and that's why people get it wrong. So when we talk about things like what happened to David in the airplane, they get it wrong because they're thinking about law and order or something, and they're hearing people have these outbursts, and so they even sometimes label Tourette as, "Oh, that's my Tourette." People that are normal say, "That's my Tourette."

Dr. Nath:
Yes, I hear that joke sometimes, yeah.

Dr. Okun:
It's very unfortunate, right?

Dr. Nath:
Yeah.

Dr. Okun:
And so that's not the way it is. It's a minority of folks that have that. And when you get stressed or anxious or haven't slept enough, these circuits in the brain, all of these circuits that are abnormal called the basal ganglia, they start talking in abnormal ways and you amp up and you get more of these types of symptoms. And so in a nutshell, that's the syndrome of Tourette, and it usually presents before the age of 18, and those motor and vocal tics change over time, and there's a huge delay to diagnosis, Audrey.
So people will sit with Tourette for many years, years. I'm not just talking about months, I'm talking about five plus years. If you look at the Tourette Association of America data, people will sit undiagnosed and people will think it's other things that are causing this, and they realize this is Tourette. And so it hasn't been recognized, it hasn't been diagnosed enough, hasn't been appreciated. And certainly we don't show the respect to these folks like what you saw on the airplane with David.

Dr. Nath:
Absolutely. Like what you were saying, he described this as well, that there are certain factors that could make his tics more prominent or worse, such as thinking about them. And that's where this kind of led to a vicious cycle where if someone was staring at him or taking photos of him, that could end up making it worse, that he managed to find a way to have radical acceptance that this is happening, and then to write about it because he's a writer and then share the story with the world.
What I find to be kind of interesting is along those lines that there are some children at least who will describe that they have these tics and they can't help them, but there are some situations such as potentially while performing either theater or music, where sometimes where they're in that zone and activating different parts of the brain that the tics can be suppressed. Do you see that in adults as well?

Dr. Okun:
Yeah. This is super, super interesting, Audrey. We liken this to something we call hyper focused. When people become hyper focused on an activity with Tourette, sometimes the tics go completely away and they actually perform at very high levels with this. We can see this in some folks who have tics and also have autism, which has an overlap with Tourette. They very commonly can have tics with autism and vice versa. And sometimes it's hard to tell the difference between the two. But the example I always use are the folks that sit at a chess board. So you have somebody with Tourette, they're bouncing all around, they may need that bouncy ball in their classroom, and they're kind of all over the place and they can't focus their attention, but they're championship chess players because they have that obsessive trait that actually makes them stronger. They can remember the boards, and then when they sit down, they can play a four-hour game, completely hyper-focused, hardly with any tics. And then they get up when the game is over and they start jumping all over place and it comes back around.
There was a famous neurologist named Oliver Sacks who passed away a few years ago, who wrote the book, The Man Who Mistook His Wife for a Hat and with mercury toxicity. But he actually talked a lot about the abilities of people with Tourette. There's a famous soccer player that was on the U.S. soccer team that set their record I think in the Olympics for the number of saves, Tim Howard. He says his tics go away when he's out there performing, but also the obsessive compulsive traits that they have actually worked to their advantage. So we've seen NBA basketball players that have to take a certain number of shots when they practice, and so very highly successful folk, Audrey, actually have Tourette. So a lot of the characteristics can work for you as well.

Dr. Nath:
I think that's true with the David Begnaud as well, and the amount of doggedness he's had to have to be a successful journalist and writer. I think it all does go together and it's kind of a neat example of a neurological condition that has disadvantages and things that make life difficult. But also on the flip side, can have advantageous traits as well, which is really interesting.
He was telling me about some medications that he took that were very sedating for him and how difficult that was and how alienating it was to be so groggy. Tell us about medications that we use now or what the thought process is when starting someone on medicine.

Dr. Okun:
It's interesting, and even now that I'm into my third decade as a neurologist, how things have changed even from the time that I practiced. We recently put out some guidelines with the American Academy of Neurology and Tamara Pringsheim and Davide Martino and others really contributed a lot to our thinking on this and helping people to think through this.
One of the things that we stress is education is number one, even before medication, do people understand what they have and then do people around them understand what they have? Sometimes you don't need medicines that lead to side effects and other things. Then there's been some great work and something called Cognitive Behavioral Intervention Therapies or CBIT therapies published in JAMA, The Journal of the American Medical Association, which doesn't always mean it's a great article, but in this case, it was a great article and an important article. And it showed that you can do behavioral therapies to reduce tics.
And then if you go through those things and it's still impacting the quality of your life, your ability to function in school or if you're an adult, ability to function in life, then we think about medications and there's a number of different medicines that are tried. Some people try the old-fashioned medicines that are in kind of the alpha agonist category, things like clonidine, which might help if you have anger or behavioral issues as well as suppressing some of the tics. Not awesome, but can be something that is added on. And then folks start to think about, should we use dopamine blockers? We know dopamine blockers will suppress movement and vocalizations, but they can also have weight gains, sedation, all sorts of things, some even increase your QT interval on EKGs.
We certainly try these medicines and it turns out for whatever interesting changes in how the brain is working and those signals, Audrey, we see less tardive dyskinesia. So we can actually get away with using these medicines, these dopamine blockers if they don't cause these unacceptable side effects in some of the folks. And then there are newer therapies like deep brain stimulation and people are trying transcranial magnetic stimulation and other potentially more novel ways in severe cases. And so with the new American Academy of Neurology guidelines, we think through this now in an algorithm and we try to go from the least harmful and maximize benefit, minimize side effect. And we think through from education to behavioral, from behavioral to medications and then medications on to other therapies. It wasn't true when I started in neurology. So I think it's good to pass this on to the next generation.

Dr. Nath:
That's exciting that. There's way more options now for sure. Can you give our audience an idea of what do you mean by deep brain stimulation or neuromodulation for Tourette's? Are we changing the activity in a part of the brain? What's going on with that?

Dr. Okun:
In our lab, and so this has been my preoccupation since the early 2000s when I started my first lab, where in the brain do tics come from? And so we've done a lot of recordings to try to figure this out. In trying to develop a modulation therapy, so the ability to be able to push a small, a tiny amount of electricity into a circuit in a brain and suppress tics, in order to figure that out, we've had to answer a few questions. So, what does the physiology of tic look like? And so we've recorded out brains and we have quite a bit of evidence in human tics about what they look like. Then we had to separate it. So we had to separate it from, is it voluntary movement or tic and which targets in the brain can tell the difference between those two? And then how can we apply stimulation? Can we turn it on where it doesn't even need to be on all the time?
And so we did an experiment many years ago with the National Institutes of Health where we actually turned the devices on and they were on a couple of seconds and more time off and on only a few hours a day, and they suppressed the tics in a lot of these patients.

Dr. Nath:
Interesting.

Dr. Okun:
And then we've moved forward with our thinking. Okay, if we can understand all the circuits that are involved with this, could we modulate the activity and could we teach these devices how to go on only when they see abnormal oscillations in these neural networks?
I'll tell you something, when you begin to program and you put a lead in and you push a little bit of electricity in, when you're close to the right spot in many, if not most of these patients, they have what I call a Woodstock effect. Why do I say a Woodstock effect? You had to be old enough to remember what Woodstock was. But they begin, as you're pushing up the current that goes into their brain, they begin to relax and they go, "Whoa!" So they begin to feel this sense of calm, and then if you keep pushing up, the tics will relax.
And many folks, Audrey, who have tics have what's called a premonitory urge, a sense that they need to move. And when they make that movement of the tic, they actually feel better. What's interesting as we learn about and then we begin to tinker, if I can use that word, I hate to say we tinker with people's brains, but we begin to tinker with these circuits and push electricity and try to understand how this all works and fits together, we can actually modulate and suppress many of the motor tics and the vocal tics.
And much of what we've done across many targets, and we run an international database through the Tourette Association of America. It's published in The Journal of the American Medical Association's Neurology Journal, JAMA Neurology. It's a publicly available database. You can see all the outcomes from all over the world. If you look across multiple targets and multiple areas, you can suppress on mean. So in the middle, most patients get 40% or 50% suppression of these motor and vocal tics, which is very interesting, and it's often associated with these reductions in anxiety and urge. It's really fascinating and it's an interesting journey.

Dr. Nath:
I just want to clarify for our listeners, when you were talking about the Woodstock effect, what you're referring to is that this electrode is being placed in the brain and you're figuring out exactly which location to be introducing current and the patient is awake while this is happening because there are certain types of neurological procedures that can be done with the patient awake in order to give us feedback, which is really cool in case anyone wasn't quite visualizing what you were talking about.

Dr. Okun:
Yeah, that's right. I think what's interesting is the electrodes are implanted through a tiny little hole in the top of the skull. It's about a dime-sized hole and connected to these almost pacemakers, but the wires go to the brain, they don't go to the heart. And then we can change the pacemakers like programming your iPhone. We can update the software and we can change the devices and do all sorts of interesting things with how we give the stem. But one thing that's important for folks to understand is that Tourette is a syndrome, and we talked about that at the beginning. One of the biggest challenges is that even though, Audrey, we can suppress a lot of these motor and vocal tics, it doesn't necessarily make their lives better, help them to reintegrate back into society or treat some of the other comorbid issues like the obsessiveness or the attention deficit hyperactivity disorder. So you have to continue to treat the entire person.
So we focused a lot now in this humble. So we've eaten our humble pie when it comes to learning about this, at least in our lab over the last 20 years. And the humble pie has been, look, just because we can suppress a lot of these tics and high five each other and say, "This is really cool." That's not the name of the game. We've got to actually help people to reintegrate back into society. One of the big challenges with Tourette is that when you have something like this, and coming back to that story on the airplane with David, okay?

Dr. Nath:
Yeah.

Dr. Okun:
When you have something like this your whole life, you develop all these defense mechanisms to be able to just function in your life. So then if we take away all the tics that are there, it doesn't necessarily change contextually how you, during your formative years have learned to deal with society and job and all of these things. And so reintegration is a real challenge, and this is the challenge of being human, Audrey.

Dr. Nath:
I would like the listeners to hear from you, in the future, what are you hopeful for? Or if there is a patient out there that's just getting diagnosed, what would you want them to know?

Dr. Okun:
My hope is that when there are symptoms that our pediatricians, our general neurologists, our parents, our folks out there can recognize the symptoms earlier because most of these Tourette kids are very high IQ and they're going to do really well. And if we can identify and we can erase the stigma and help the people around them to know it's okay to have Tourette, we can provide them with a much better chance of a successful life no matter what therapies we choose. There are also going to be many people who don't need meds and don't need behavioral therapy if we got on there early because of the natural history of Tourette.
So the majority of people, the Tourette's going to spike up early on and then through adolescence and early adulthood, and then it's going to begin to wane back, and they might actually end up with more of the behavioral features, and then maybe they get sick or stressed or anxious, and then it comes back up like it did in David as an adult, or somebody didn't know they had Tourette and they turn 60 or 65, they lose a spouse, they go under a lot of stress, they start ticcing and they say, "Why is this person ticcing?" And then you go back in the history and you realize they had Tourette when they were younger, a younger case of Tourette, and they were put in the corner or other things.

Dr. Nath:
But no one uncovered it.

Dr. Okun:
Yes. So my biggest hope, Audrey, is the humanity. Humanity is my biggest hope. We can help to get these things diagnosed early. We can create humanity for these people and help the public to realize that having Tourette isn't a negative, it can be a positive. Everybody has different skills. Everybody's got a superpower they say to add. And many of these Tourette folks have superpowers in the way that they do things, whether it's Tim Howard or whether it's David as a super reporter. There are a lot of superpowers for these folks and we need to help them to integrate.
The other issue that I hope is resolved is we've been very vocal about availability of devices and availability of treatments. I'm very worried in Tourette because we still don't have an FDA approval, and device companies have now become shy about doing what's called humanitarian device exemptions. Insurance companies don't want to pay for these devices. So we are going to have a generation not just in Tourette, but we're going to have a generation of people with rare and diseases that are smaller or groups of larger diseases like Tourette, where we actually have innovated the answers for people and we can't get them to people. And this is evolving in Tourette, it's evolving in obsessive compulsive disorder. And so we've been vocal advocates in the journals and at meetings and really trying to get behind the advocacy piece of creating something.
The FDA rules on this are like 20 years old. The laws are really old. We need to, as we're innovating all these new treatments, make sure they're going to be accessible, somebody's going to pay for them, and we make it worthwhile for industry to stay in the game because if they can't make money, people will say, "Well, that's greedy." And I say, "Well, you know what? It doesn't matter what it is. If we can't get the people the devices they need because of insurance companies or industry, we've got to make better partnerships to make that happen." So I'm hopeful because many of these kids can have very severe tics, and if they don't get the stimulation, they can have head snapping tics. And we've seen many people become quadriplegic because of that and paraplegic. And so there are some disastrous consequences. And so we need to create accessibility. And so accessibility and education are really high on my list.

Dr. Nath:
Well, I'm with you on all of that. Thank you so much for joining us today.

Dr. Okun:
Oh, it's my pleasure to be here, Audrey.

Dr. Correa:
Thank you again for joining us on the Brain & Life podcast. Follow and subscribe to this podcast so that you don't miss our weekly episodes. You can also sign up to receive the Brain & Life magazine for free at brainandlife.org.

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Dr. Nath:
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From Obstacle to Opportunity: David Begnaud on Living with Tourette Syndrome

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