Demystifying Georges Gilles de la Tourette: The Early History of Tourette Syndrome Part 1

In this episode, we embark on the first of a two-part series, diving into the history of Tourette Syndrome (TS) with Dr. Howard Kushner, a renowned expert in the history of neurology and medicine. We explore the evolution of TS from its earliest documentation, predating the 19th century, through the significant contributions of Georges Gilles de la Tourette, and its progression across medical and psychological models throughout the 20th century.
 
Dr. Kushner guides us through the shifting perspectives on TS, from the bleak early views encapsulated by the phrase "once a ticker, always a ticker," through the era of psychoanalytic blame, to our current understanding of TS as a multifaceted neurodevelopmental condition. Drawing from his vast research and his 1999 seminal work, "A Cursing Brain? The Histories of Tourette Syndrome," we examine the complex journey of TS diagnosis, the stigma attached to symptoms such as coprolalia, and the importance of a supportive community and multidisciplinary care for those affected.

Timeline Highlights:
[02:00] How Dr. Kushner first became interested in researching Tourette's Syndrome.
[5:10] Dr. Kushner's continued involvement in the TS community.
[7:14] How the book on Tourette's Syndrome has held up over time.
[13:41] Early psychoanalytic theories blaming patients and parents.
[17:08] The early history of Tourette Syndrome in the 1800s.
[20:03] The disturbing early anti-Semitism in TS research.
[22:20] The focus on coprolalia in the early characterization of TS.
[23:57] The notion that childhood sexual conflicts caused TS.
[24:35] Tic reduction when engrossed in an activity - an early observation.
[26:46] The Tourette Syndrome Association reframing TS as biological.
[28:16] The importance of youth support groups for TS.
[30:36] The heroic contributions of Shapiro in advocating for TS.
[32:10] Early evidence that medications could treat TS.
[33:09] Predictions for the next 50 years in TS research and treatment.
[35:18] Emerging interventions like DBS brain stimulation for TS.
[37:13] Advice for living well with TS.

Links & Resources:
•A Cursing Brain: The Histories of Tourette Syndrome by Dr. Howard Kushner.
•New Jersey Center for Tourette Syndrome and Associated Disorders (NJCTS): https://njcts.org/ 

Stay tuned for part 2 of this interview on March 12 as we go further into the history of TS! If you found this look at the history of Tourette's helpful, don't forget to subscribe, rate, and review! It helps spread the word.

Transcript

Dr. Howard Kushner: 0:00

I was surprised when I read the book. And how had it's the may sound immodest, but I'm not trying to how well it stood up in terms of the history of it. So I was fascinatingly really well booked the last couple of days because of you. So I appreciate that. The definition of Tourette's, it's a syndrome therefore as signs and symptoms, it's not always the same in each person. We don't really agree on what the population is. So people who we can diagnose the support of the European diagnostic code and Tourette's, like movements are put under obsessive compulsive disorders. And yet, they weren't in school very recently because obsessive compulsive disorders was a psychiatric diagnosis mainly organic. I think the idea is to keep an open mind and not to look for a single cause for a complex disorder.

Michael Leopold: 0:50

Welcome to the uptick, brought to you by The New Jersey Center for Tourette syndrome and associated disorders, empowering children and adults through education, advocacy and research by sharing the stories and experiences relevant to the TS community. Welcome back to the apptech and thank you for joining us on this special two part episode series. demystifying the history of the Tourette Syndrome diagnosis. I'm here with Dr. Howard Kushner. Dr. Kushner is an emeritus professor at Emory University, University of California, San Diego and San Diego State University. He's a historian of medicine and neurology and has authored several books in this space, including his 1999 book, A cursing brain, the histories of Tourette syndrome. The book is well researched and a meticulously documented account of the historical evolution of Tourette from the early 19 century to the late 20th. In this episode, we'll discuss Dr. Kushner his background as a scholar of neuroscience and history, and will give an overview of his book person brain, Dr. Kushner, it's great speaking with you today.

Dr. Howard Kushner: 1:57

It was nice talking to you, Michael, thank you for reaching out to me. Absolutely.

Michael Leopold: 2:01

You've done a lot of incredible research in this space. And I want to start by asking about how you first became interested in Tourette Syndrome. You write in the preface of your book about how in the 80s, you met a teenage neighbor of yours who had the condition and I think our listeners would find this story interesting.

Dr. Howard Kushner: 2:19

This was a time that had just finished writing a book on suicide and depression in America. And I have been trained to bid in psychoanalysis. Although I no longer have the same attitude toward it as I do that. And this kid across the street, this young guy is minutes early, as late teens, early 20s would come over and stand and talk to my son and would have vocalizations and particularly, he'd have loud thinks he can make loud noises. T said is the head Tourette syndrome. And I thought, well, that's just sounds like psychogenic disorder not not an organic disorder. So I decided to learn more about it. The more I learned, the more I began, what the etiology was really uncertain. And the people who were diagnosed with Tourette Syndrome, I had a very tough time of it. And so I thought this would be a good place for me to test this notion of whether it's psychogenic organic or whether it even might be postinfectious began to work there. And I began to be more and more convinced that will be called Tourette Syndrome had a inflammatory or somehow or other had some sort of sequel as a result of an earlier strep infection. So I decided to write a grant. So I learned more about this. And when I wrote the grant, I went to the Tourette Association in New York, which I didn't know about until I started looking. And they connected me with Omen, Kiessling. And she was a pediatrician at Brown University at the medical school pediatrics. Her first name was Louisans. She said, why don't you come here and watch patients for a couple of years and see what's going on. Since I had the grant. I went to Brown medical school to the pediatric hospital called Memorial Hospital. And for two years, I observed the patients and the treatment that they were receiving. And this postinfectious theory was the one that Kiesling was particularly enamored with. So I would sit in all we'd ask the patient sorry, Dr. Krishna is writing a book on Tourette syndrome for our work. We already sat in on your interview, everyone said yes. And so I learned a lot. I realized that you can look at one of these disorders that are so confusing by looking at by one methodology alone that psychological methodology were important organic ones, familiar ones, behavioral ones, and particularly increasingly, post infectious ones that and I also learned that not all of the patients had the same etiology, the same experiences, the same underlying conditions that led to their presentations. I think one of the things I really learned for this is you can't talk about patients and their histories unless you actually sit there and listen to them and talk to them and follow them up. So that's how I got out there and I followed Michael, my neighbor for the rest of next 30 years. Wow, that led me to Tourette's association to meeting other people with Tourette's.

Michael Leopold: 5:10

Are you still involved in the Tourette space these days?

Dr. Howard Kushner: 5:13

Not as much as I should be actually. I just published a book about three years ago and left handedness came from the studies of Tourette Syndrome, because I noticed that a lot of our patients, pediatric patients seem more than normal of the population more than normal percentage seem to be left handed, or wanted to know what was there. So that led his study of left handedness. And turns out we're so uncertain about what left handedness is as we are about some guys with Tourette's that was. So yeah, but I kept moving from one little aspect that I would then blow up into a bigger book of reading over the book again, which I hadn't done in a while, I realized that I had traveled very far to get to these understandings. And then different countries, particularly the French that see it as totally non organic. And the Americans who saw it almost entirely as organic get treated with things like now though, another major tranquilizers. But when I got into it, dominant theory was psychoanalytic. I talk a lot about working with the parents and the patients also not only that I hang around with the patients, but I also had access to the people who first set up the Tourette Association in Bayside, New York. And they were very helpful to me and I met the Shapiro's, who were the first ones in the United States, who argued this is an organic disorder, and that a psychological disorder, they said would be a wastepaper basket definition. So I had a lot of people very interested in helping me solve the mysteries of Tourette's. And now that I read this over, I realized I could make other contributions. But I'm also working on a childhood heart disease called Kawasaki disease, which I was recruited for when I was giving a talk on Tourette syndrome at the University of California, San Diego, about pediatric causes of Tourette syndrome. And afterwards, one of the pediatricians asked if I would work with her for a while on calissa disease, which is totally different. But nevertheless, you could use the same kinds of methodologies. So it's been a quite an interesting trip for me. No,

Michael Leopold: 7:15

it absolutely sounds like it. And one thing I was thinking about was how the book was published in back in 99. And I'm curious if you were to write it today, if you would change or add anything, or I guess another way of asking this question is, if you were to come out with a new chapter for the book today, what would you like to say?

Dr. Howard Kushner: 7:35

I think the evidence of the multiple etiology would be even stronger than before, there's been a lot more research and interventions through on the assumption that it's supposed to and cephalic for a post infectious disorder. So I'll give you one example. I think that would explain what have a look at this. And I have written published some of this and other places, human as far away as Brazil. When I first started in Tourette Syndrome, the major treatment by pediatricians who worked psychoanalytic was that there was a some neurotransmitter disorder in the basal ganglia where the dopamine production is. And the treatment was to use heavy duty meds, particularly how the leaves what I found, and I did follow these up with another one of my students who wrote a book on cursing and with these patients, that it was very difficult for most of the patients after initially doing very well with alcohol to maintain themselves on and in fact, they was able to interview all the first patients who were in New York who were a given held will. And it turned out that it was it made them zombie like so then they would have another medication for the other day. So all these medications, and they sort of worked, but not for everyone and the older ones who didn't work for sometimes it was self medicate, no often, perfectly was tobacco, marijuana and alcohol. And just think if it turns out to be postinfectious, I said to myself, that would mean or eventually be totally different. We'd stop the antibodies to strep infection. Radek strip, my beanie their blood, because plasma races give me prophylaxis them on antibiotics, and also aspirin. Also, we wouldn't be making them therefore, so much dependent on drugs that, although they worked a bit, had a lot of bad side effects for a lot of the patients. So I think if I were to write more about it, it will be this and I think I have written some more of this in the early 1990s. When I read it, I must admit some this has happened. So I think all authors, I'd say, I don't know how I know that. Thank you for asking me to reread my old book. While

Michael Leopold: 9:45

I was rereading it over the last the last couple days in preparation for this. I mean, the idea of multiple ideologies, I think is getting a lot more traction these days. They've also it's been informed by genetics research, too, that we're finding all these different genetic profiles for people with it and I know what rock because they've identified over 500 unique genetic profiles that can lead to Tourette's, one thing I have found, I don't know if you can shed any light on this or have insight into this, but the post infectious etiology hypothesis is kind of controversial in the Tourette research world, whatever the reason for that there's a lot of

Dr. Howard Kushner: 10:19

resistance. So because people were so invested in and two things, one is not making CS psychogenic. So seeing it as organic, and therefore thinking that organic would be if there was a substrate there. That's the result of heritability. And the more you learn about the way these things interact, the more you realize that they don't actually cancel each other out. So for instance, in serial strep infections, the danger comes not from the strep infection itself for the bacteria, but from the antibodies to the bacteria, your own immune system that attached to the basal ganglia, and interfere with movements of the dopaminergic circuit. And so there can be hereditary response to rheumatic strep, there can be several things coming together that can run in families. So that was really over the chapter I wrote about that. And what I noticed in the book all the way through was how persistent This finding was that there was some relationship between robotic strip and fin in different countries. And so it it always was sort of there, but no one really followed it until the 1990s, I think was really what if you could interfere with the mechanism all the way through dampened down the antibodies, then you would have an intervention, which for some, not all people have the same causes of Tourette's not all runs in families. But for a substantial population, you be able to have interventions that had very small side effects. Now, some people there's nothing else they can do. But the thing we became more worried about an Emory but I was still working there on this was the number of people that self medicate, it was so difficult to stay on the medications, even though people titrated down a lot. And there can be many of a variety of outcomes to single insult, or there can be many insults that present themselves as if they're one disease. And I think Tourette's is much if you think about this, for a long time, Tourette syndrome was seen as a rare disease. And part of the reason for that was that obsessive compulsive disorders, which seem to be very close to Tourette's often were excluded from the Diagnostic and Statistical Manual, because they were looking for an absolutely clean example to research on. So what would mean you could only do things that people had certain kinds of Tourette's, but only 14% of kids with Tourette's had just Tourette's, where the rest of them had a variety of things. So I think that's what I would do. I would work more with teams and follow up with some of these patients we had. I was surprised when I read the book, and health had estimate sounded modest, but I'm not trying to how well it stood up in terms of the history of it. So I was fascinatingly really well booked the last couple of days because of you. So I appreciate that. But back to the other point is that the definition of Tourette's, it's a syndrome therefore, as signs and symptoms, it's not always the size same in each person, that we don't really agree on what the population is. So people who we can diagnose the support of the European diagnostic code and Tourette's, like movements are put under obsessive compulsive disorders. And yet, they weren't until very recently because obsessive compulsive disorders was a psychiatric diagnosis, mainly organic. I think the idea is to keep an open mind and not to look for a single cause for a complex disorder.

Michael Leopold: 13:42

Your book explores a lot of the early psychoanalytic theories of Tourette the some of the earliest scholars in the field, were attributing it to bad habits or lack of self control or bad parenting. And while a lot of that is now kind of dismissed as there is more of that organic origin to it, we are revisiting these theories to some extent I mean, we're seeing success with Habit Reversal training, cognitive behavioral therapy, especially see bit so some of these ideas around it being self control, the pre monetary urge, how much control do I really have over that there's a balance there. And I'm not saying any one theory is entirely correct, but it is interesting how we are revisiting some of those older psychoanalytic ways of viewing this and treating

Dr. Howard Kushner: 14:26

other psychological ways. I think the thing is, that was over the history of attitude. There was a tendency to blame patients. Right for see them as weak or see them as exhibitionist and some of their most famous people who treated them, blame them rather than the Margaret ball of old chapter. Dean of Tourette syndrome. And when the patients didn't get any better, they said, Well, that's a good thing. Because they cured that then that it ticked itself as it is protection against some greater mental disorder, which is a really be silly, ridiculous. But if you're living that value and get things published, you have to accept that set of descriptions then excludes other kinds. This story of Oh, which is one of the chapters, poor guy did everything he could he was a successful manufacturer, but managing vandals nevertheless, blamed him for his tics. And when he tried to commit suicide, they made light of it, then all of us made a joke of it, which was really horrible. This guy had done everything he could when then 1980s When it first really uses the 1970s were for alcohol. When they were out there for the first time. People weren't blaming their patients, but remember, Adam Seligman? Oh yeah. And he was he went to the first Tourette's meeting, he became a poster person for Tourette's. And he had incredibly fluid symptoms and science. So at first he be he was recruited by the but after a while, he became a liability because there was this attempt to make Tourette's wider diagnose disorder. And so they wanted to assure parents that not every case was going to be floored. So as a result, they would shut him off. And he actually, I guess, he died early. I had sent him a heart attack, but I'm pretty sure it was something else. It

Michael Leopold: 16:17

actually is, on this point, you ended the article you sent me on the cursing brain with a really great statement that gets to the heart of what you're saying. You said, Oh, well meaning attempt to reassure parents that they're diagnosed children will neither curse nor display other fluids symptoms should not authorize us to neglect those who do love that. I mean, that's it that hits the nail on the head there. And I

Dr. Howard Kushner: 16:41

think that's really my take home message in my book, which is you have to have empathy with you. You can't blame your patients and you can't blame your failures on the patients themselves. Issue. Keep an open mind. I mean, when you realize that we don't really even agree on a definition over time. It's hard to do a history. If the definition we're talking about changes over time. So it's a perfect disorder to learn about history, multidisciplinary approach is a problem solving. I think all my work is problem based.

Michael Leopold: 17:08

I want to dive into some of the early history of Tourette so you can teach me how to say the name Giorgio GILLA de la Tourette, George. I could just say George, his name

Dr. Howard Kushner: 17:18

is not Tourette as people put them on shield a lot to read. It's a French noble name jheel Gi Oh, yes, did Torah is his last name to you. The French have incredible contempt for Americans.

Michael Leopold: 17:31

One of the things he wrote was in the early days prognosis was very bleak. It was grim. He wrote that there is no hope of a complete cure. There's a quote, once it ticker always a ticker. I'm grateful. I was born in 1993. And even then, when I was first diagnosed, my neurologist almost did put me on hold while I was growing up in rural Indiana. I don't think we knew in the community I was in about some of the later latest treatments being used. But I would say okay, being born in the 90s with ticks is way better than being born in the 1890s with tics. If I were born with Tourette in the late 1800s. And let's say I had access to some of the best researchers and physicians of the time. What would treatment look like for me if it really believed that there's no complete cure? Would the focus just beyond helping me develop my willpower to overcome tics? Or what what would treatment even look like? Well,

Dr. Howard Kushner: 18:23

as you pointed out, it's to make a definition of Tourette's. And because immediately when a typology was laid out, some of shortcodes other students attacked, it said, No, it was wrong. But the thing is that the treatment at that point was hopeless, because the definition of the disorder was we get worse and worse, like Marquise air. But the trouble with that conclusion was that the patients themselves, he didn't have in this study, they didn't have enough patients that live long enough that they were not alive, but they were the entire article is based on people who are in their 20s. So you sit down Pierre, who is I point out, though, whenever So anyhow, the treatment would be you'd be forced between and among these people. But the strongest voice that emerged from the 1890s by managing fentanyl was that this disorder was a result of the lack of self control of the people who demonstrated these clinical signs. So that wouldn't be very helpful at all. Because since when doctors can't solve a problem again, they often attack the people supposed to be treating and managing phenol they also represent as the whole charcoal group does have late 19th century neurology but in some of that aroma ology they don't have any good intervention so for instance, mentioned fend off we added himself that they all got a right a second doctorate in France. And so he wrote me as wrote his second doctorate on the melody to the show we fell on it, which is oh, did your I guess you read this and the book, blaming the Jews for make creating exactly, except given where we live in right now may not be.

Michael Leopold: 20:03

I noticed that too that was eye opening to me was the early anti semitism and the history of Tourette. I did not know that until I read your book that was frightening to read.

Dr. Howard Kushner: 20:12

This was science, the idea that you went from doctor out and somebody was wrong with you questioning your physician, right? There was a disease at this time called normality that up yet, which was that people would come to see their physicians, their neurologist with little lists of all their symptoms, and signs. And this was seen as a disease rather than as an attempt to get the disorder itself, except this kind of obsessive compulsive disorder.

Michael Leopold: 20:37

It isn't. I mean, this early idea in the 1800s, that the condition was degenerative, even Tourette had noted about it, he wrote that it started in early childhood, you get these tics? And then my understanding is the kind of assumption was that it ultimately evolves into coprolalia and get worse over life. Is that fair to say?

Dr. Howard Kushner: 20:57

That was the theory and echolalia. So if you couldn't show earlier, yeah, then might put it in a different category. That wasn't necessarily better category. The difference? So the degeneration argument that you inherited a weakened set of genes. If your grandfather was not bald, then you would be an alcoholic or using this, again, was this idea that was inherited, but that that there wasn't enough data to come to these conclusions? It's interesting, when you look at the treatment at some of these other patients that I lay out, they don't really fit the diagnostic category. I think that's the one lesson I learned from history, which is, and this is true of handedness or other things is that you can't make claims to things over time if you don't have the data to show you the examples and so on.

Michael Leopold: 21:42

It also underscores the point of like multiple Tourette syndromes, like we can't just write one succinct description that fits everybody. One thing I was curious about was in the early days in the 1800s, the emphasis on coprolalia. And and that being the big thing that it was believed to evolve into that and echolalia. Is it fair to say that that early characterization of this condition is ultimately what kind of pave the way for the future of Tourette being labeled associated with this swearing condition, this kind of blurting out obscenities. Is it fair to say that started in the 1800s with some of the early ways that were characterized it?

Dr. Howard Kushner: 22:20

Hundreds but it got strongest in the 1940s? Under Margaret, Mahler, Mahler. We say, Well, do you have to have this clinical sign? So they didn't have echolalia? Or Kapali? She would argue that they're repressing it right because of masturbation. Wow. Okay. If the child and the examinating are at an end, she followed them didn't display copper Lolly or echolalia. She'd still say that sign up even deeper disorder. It's almost laughable if it weren't so sad. She was convinced that all these things were repressed sexuality, towards her whole attitude toward sexuality has changed so much that so it was a disorder to be a masturbator. Wow, they hid masturbation that show that they were really masturbating.

Michael Leopold: 23:02

The Well, I mean, I mentioned this underpinned a lot of how they explained a lot of conditions, not just this, like a lot of it came down to this theme, this was

Dr. Howard Kushner: 23:10

especially psychoanalytic pediatrics, blaming the parents and early childhood conflict are all ascribed to a disorder rather than to weaken ego. But at the same time, they would also admit there was an organic substrate of these things like that it's

Michael Leopold: 23:26

organic, but also it's your fault, or it's your your bad habits. You're right.

Dr. Howard Kushner: 23:31

So if he can't find his behavior, then that's evidence that underlying behavior for the tics and vocalizations, and that's even more evidence that it's there and wonder how they cut it. They would always blame the situation in the patient's, one of the kids at the end of the chapter, I talk on the wall, he says, I don't know what you say, Is this a sex thing? I'm not thinking about sex. I just want to get rid of my tics. You're a witch. And he said, You're doing witchcraft.

Michael Leopold: 23:57

One of the things that stood out to me was how even in the early days like me as infantil observed that their patients with ticks, the ticks would often subside when they were engrossed in something they found interesting that the ticks would dissipate. Can Can you talk about that? Because that is so true. And we talk about that a lot today. It's part of how we coach people, it's find your passions, find hobbies, find things that you're, you're that really engrossed you because that is a coping mechanism. It's one of the closest things to ensure that we have and I was it was enlightening to me to learn. That was such an early discovery, or an early observation was that this did happen when they were really engrossed in something. Yeah, I

Dr. Howard Kushner: 24:35

think you know, this ability to have a different focus and work as an actor, for instance, even learning rules from plays and things which would be difficult to sitting around. But it's very interesting why that takes place. And yet, it's sometimes when you have people who are able to defer tick for a while, it's sometimes later it comes back, but they're no longer doing that. And I think that's a really good area. We have research for someone to look at why they wax and wane to begin with. But the best clinical approach would be what waxes and wanes. And again, it's infectious diseases and they end infectious diseases. So that's there. They weren't. And then 1920s Depending on where you look, you don't really have much sympathy or much discussion of his waning because they don't fall patient long enough. Patient Oh, who has an array of everything. They had the theory of explaining it before they even had the case itself. His case was used to justify their theory. What's interesting, I think, is whatever the dominant medical is particularly psychiatric theory at the time is that always becomes the causes for Tourette Syndrome. So the causes keep changing with the changing of say, of psychiatry. And now, we live in a world where we look more most infectious disorders. And where we look more at other kinds of water organic disorders. I don't think we've reached the end of our explanations of Tourette Syndrome by any means, I guess, but I still I would agree. Yeah, it's a very interesting thing to study. I wish more people would do it better to

Michael Leopold: 26:08

you and me both. Turret really came to the public forefront in the late 20th century, beginning with the emergence of the Tourette Syndrome Association. You talked about this in your book in 1972, there was a group of New York City area parents, they had children with this condition, they started a support group that was the origin of the the organization now the largest in the world for Tourette support and research and advocacy. And it sounds like in the early days of the TSA, they were really intent on replacing these dominant psychoanalytic frameworks that tied the condition to bad parenting lack of discipline, early childhood sexual conflict. Is that a fair characterization?

Dr. Howard Kushner: 26:46

I think it's exactly right. I think the only thing I'd add, which doesn't detract from what you said is that parents would feel bad after a while when they had their kids on some meds particularly helpful. Because their children, there was a lot of rapid weight gain the kids were on. I mean, there's that there's still the parental guilt. But certainly there was a real concerted effort by these people from New York City, and Shapiro's to get their story out. And they were very open to me. I mean, they invited me to stay with him, because they really wanted to come up with some explanation. But there were some very sad things that happened in two that I didn't write about, which is the problem of siblings of people with Tourette's Syndrome, or any other kind of pediatric psychiatric disorder, it's very difficult on the siblings as well. And sometimes the parents focus more on one than the other, I don't have any solution for that, except to find the cure for the disorder. So they deserve a lot of credit, be asked me what the most important thing and treatment would be, I would say support groups for kids with kids make to him to support his Tourette's talking to one another that really is helpful. And no, looking at many films or introducing myself, many of them patients, they would all tell me that the most useful thing that they had was the chance to talk to other people experienced. And so when they were younger, and it might have gotten worse and worse over time, this signs the symptoms, they were more prepared. And also pure help is really important. Oh, it's

Michael Leopold: 28:16

huge. I mean, now the Tourette Association as a Youth Ambassador Program rising like they have a number of I think there's a junior youth ambassador program as well. The organization this podcast is with NJ CTS has a youth advocate program kind of similar and that's that's the point of the we take young people with this condition, teach them to be advocates, but you're also getting them in front of other young people with it. And I went through these programs growing up and I found that was getting to meet other people with it was so liberating and did so much for my own confidence. Because with the numbers on it, I mean, yeah, we are learning it's more common than we once thought. But still a lot of kids are growing up not meeting someone else with it. It can be very isolating. I

Dr. Howard Kushner: 28:56

think that's exactly right. If he asked yourself another question, How come there are so few Tourette's diagnoses earlier and say the first half of the 20th century, and so many more in the second half of 20 century? Is there actually something that creates more? Is it ascertainment bias? In other words, we now have a label for this as spectrum disorder from mild to very, very severe. Is that just it or is there something else? Is there an actual real increase? When I worked on other disorder, Kawasaki disease? That was the question I had to answer? Was there actually more Kawasaki disease? Or was there more ascertainment of it? And I think that's a good thing to always ask yourself when you're looking at these sorts of things. Oh,

Michael Leopold: 29:41

ADHD, too. I mean, that one with the diagnosis of ADHD really exploding in recent decades. I've heard out there as well come up that question. Yeah.

Dr. Howard Kushner: 29:49

Well, what happens when you add obsessive compulsive disorders, other kinds of focus disorders. With other Tourette's, you get a much larger number Maybe people also are less interested in trying to hide the fact that their kids had Tourette's and much more open about it, which makes it easier for everyone. I mean, I had a patient who would say whatever he got an aeroplane there's a bomb on the plane, which is not a good thing to say that. But I think we've become much more accustomed to it and we see a bigger spectrum of what constitutes Tourette syndrome and involuntary speech and other things.

Michael Leopold: 30:28

Can you talk a little bit about the contributions of the Shapiro's in reframing the this condition as organic, there

Dr. Howard Kushner: 30:37

are quite heroes actually, he kept running into the fact that these patients, he also read the literature. And notice that in Europe, there are a lot of people as they were trying Tourette syndrome, where the signs and symptoms of Tourette's to a wider population because they included obsessive compulsive behaviors and ADHD. And so if you add those in, and then all of a sudden you have more, and also people willing to talk about it. And this sense is much more well known. So this Shapiro's, they were at Cornell hospital, they kept insisting this was organic, and essentially, he couldn't get his article published following these patients. So finally, the only place he could get that fat famous now, paper about Tourette syndrome can be treated without how though he couldn't get it published in United States. So how to be published in the British Journal of Psychiatry. Oh, so that's the other thing. The politics of medicine and sub categories, has a lot to do with what goes on. People are very much attached to their theories. Yeah, yeah, that is human nature. I had met Shapiro, just as he was dying. I just got to town and was supposed to interview him. And when I was at their house, he got the phone call that he had prostate cancer. Oh, but they were very nice to me. They still they wanted to get their story out. And he really gave the foundation that Tourette's foundation organizations really their first legitimacy. Later on. They didn't all get along so well. Mrs. Dr. Shapiro was very generous with her time and efforts. And

Michael Leopold: 32:10

it sounds like one of the best pieces of evidence that we had for Tourette being this organic biological ideology came from research by Ben Shapiro's, and others showing that medications like holdall could help people. I mean, I'll be at with some nasty side effects and not fit for everybody. If

Dr. Howard Kushner: 32:29

some people could tolerate it for much longer. Now, of course, the dose is much lower. And so the toleration is better. But it's very difficult for older people with Tourette's, as you know, and some have done remarkably well and others have had more problems. And the cultural context of which they experienced it, I think makes a big difference. I'm

Michael Leopold: 32:50

going to ask a question that is kind of impossible to answer. But some of it we've touched on already. If you were to predict the next 50 years of Tourette frameworks, research, how we characterize it, that we describe it in 50 years, how do you think this situation will look?

Dr. Howard Kushner: 33:10

Well, I can only predict the past because, right?

Michael Leopold: 33:14

So I said it's an impossible question.

Dr. Howard Kushner: 33:15

Yeah. But I would say the tense what's going to be taken much more seriously, or post infectious disorders and multi faceted disorders, the drugs we have now, there's an intervention, therapeutic intervention, where you can go into the basal ganglia and change the off switches in the basal ganglia. Deep Brain. So DBS Yeah, yeah. And it works. I've seen incredible examples of where it works for kids who couldn't walk off the pavement without jumping down five times, or banging their head at this operation worked. It also works for the Parkinsonian patients of the opposite direction is the same structure. But when you want to increase dopamine, the other you want to decrease it. So anything that will be able to make the bank be again that the brain will operate without having to do serious interventions, it's going to be a big difference. And so I think there'll be more neurobiology and more immunology, and beginning the collaboration between these different fields, which are much more apps now, then I think that's going to open much more and open lots of possibilities. So I think it'll be better. Also, our diagnostic tools are better, but sometimes not making a diagnosis can be as valuable as making a diagnosis.

Michael Leopold: 34:36

Can you elaborate on that? That's an interesting point.

Dr. Howard Kushner: 34:39

There was a time in which especially in 1970s, late 70s, and 80s, where people would identify im Tourette Syndrome, by a guess that they went with that sometimes was making them into the disease. Their whole life was around the disease. And as you pointed out with examples of people who can do something else, and their tics go away, at least for that time period, me There's a lot more they can do. So I think that's going to make a bigger difference. When we so much of our life is medicalized to begin with, I think there are ways that current interventions in neurobiology over time. DBS is also now used for obsessive compulsive disorders.

Michael Leopold: 35:18

I read about that. Yeah, there's been some cases, actually

Dr. Howard Kushner: 35:22

that time at Emory. And there's a guy named Michael Wolken. If you run into him, in Florida, it was really good. He does what's called Gamma Knife interventions. He was also an average at that time.

Michael Leopold: 35:33

And I have also seen new research coming out with like TMS transcranial magnetic stimulation for ticks. I am not familiar with the efficacy of that right now that's being studied also the cannabinoid region of our brain. There's also a number of anecdotal reports of patients finding benefit with marijuana,

Dr. Howard Kushner: 35:51

THC. We know it works, because they were using it. I was gonna bring that up. Yeah, you mentioned that our patients are 60 patients that were falling adult patients, they had heavy marijuana use, it seemed to work pretty well, whereas alcohol and cigarette smoking does not work as well. But on the other hand, initially, sometimes cigarette smoking, although there's all kinds of downsides to it, I'm not advocating it. Sometimes it gets somebody through a period is difficult. And maybe we can figure out ways to use nicotine in a more efficient way that we are coping with, I can answer your question about the future. But one thing for sure is I won't be here 15 years from now, but write to me, or

Michael Leopold: 36:29

your contributions will be will still be felt. I mean, you put together an incredible book that just outlines the whole history from the 1800s to late 1900s, I do recommend it to our listeners who are looking to understand who were these initial doctors and the person our condition is named after was his contribution to really well, well written book.

Dr. Howard Kushner: 36:48

Thank you very much. Thank you also for asking me to talk about it, because it forced me to go back and look at it. And one of the things I found reading the book, I've been interested lately in stuttering, and a lot of Tourette's patients and people diagnosed were, in fact stutters from time to time, we looked at that very much in terms of handedness as well, there's a lot more to do that other people can do move from where I was to what we've learned in the last 25 years.

Michael Leopold: 37:14

One last question is someone who's seen many patients with this condition. What advice do you have for people with that I always like to end my interviews with with some question like this, what would you tell a Tourette patient especially adults with it?

Dr. Howard Kushner: 37:29

Well, I don't know, I'd have to have their each case as it is. or So it's hard to say. But the one thing I would recommend was interaction with other people with Tourette's sometimes, especially for young kids. Some people do really well on medications, as some of the TPS operations we did are amazing. So I think the movement is going to be more sophisticated understanding of the interaction of genetics and genes and infectious disease, much more collaboration work will be done. And that's true every place. So it should be an exciting time to to work on this and maybe to find some other interventions but not hiding it and not feeling guilty everywhere. I'd start and I certainly would encourage youth support groups, which I see there's many of them now.

Michael Leopold: 38:15

That is something we've done great work with the TA and JC Ts, other Tourette organizations, there's summer camps. Now you can go to I volunteer every August for the Tim Howard Leadership Academy, where we take high school students with ticks and we teach them how to make that transition into adulthood driving getting your first job with ticks. Do I disclose in a job interview? What should first responders know about ticks, if I'm in an accident, we train them on these things. And I've seen that be so empowering for these students that it's such a critical age to where you're 14 to 17 years old and starting to grapple with the emergence of adulthood. That is a time with lots of questions and challenges. And people need that support and support from others who get it other young people with tics, adults who have had it for many years, you know, getting it from people who have lived it.

Dr. Howard Kushner: 39:01

I think I think that's true. You don't want to romanticize disease, some people do and you don't want to ignore it. You know, if you ask me in 1992, when you were born with the future would be I think it's been remarkable what's taken over and people of understanding, opening and willingness to find this more widely. So I think having these institutions like the summer camp and other sorts of things, having annual meetings, these are all very helpful. local chapters were a good thing at first, but they also sometimes would have a downside as well. Now with

Michael Leopold: 39:34

the internet, I mean, people are finding support groups on online and we can do so much more remotely to connecting people

Dr. Howard Kushner: 39:40

as we were able to do today. There is

Michael Leopold: 39:43

so much more to discuss. Join us for part two on Tuesday, March 12. For the rest of our discussion, we'll dive into the contributions of Giorgio Gil della Tourette and how the Tourette diagnosis evolved through various medical and psychological models over The 19th and 20th centuries, you don't want to miss this. Thank you for listening to the uptick, brought to you by The New Jersey Center for Tourette syndrome and associated disorders, empowering you to stretch the boundaries to live your best life. The NJ center for Tourette syndrome and Associated Disorders NJ CTS, its directors and employees assume no responsibility for the accuracy, completeness, objectivity, or usefulness of the information presented on this podcast. We do not endorse any recommendation or opinion made by any guest nor do we advocate any treatment