Living Loudly With Tourette Syndrome: James Durbin’s Story of Finding His Voice Through Music

Episode Transcript

MUSIC:
I find myself-

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

Dr. Peters:
And I am Dr. Katie Peters, and this is the Brain & Life podcast.

MUSIC:
Somebody to save me from the lonely man I've become.
I've got you, babe.
We've got some new friends.

Dr. Correa:
All right. Are we getting anywhere closer to spring? I hope. Welcome back to the Brain & Life podcast. Along with the spring, sometimes comes all kinds of new TV shows. I've been seeing the ads for it, haven't gotten to see an episode yet. I tend to like to catch up with Top Chef at some point when it's back on TV. Katie, what do you watch of any of the reality TV talent and art competitions that are out there?

Dr. Peters:
Oh, Dr. Correa. I'm a consumer of reality TV, but of a much different recipe or varietal. I watch much less competition shows and I'm a fan more of the Kardashians, a huge fan, Kardashians, Below Deck. But if it is a competition show, I did like that show Making It with Amy Pohler and Nick Offerman where they had to be handy and make stuff because that is just not something I can do. So no high [inaudible 00:01:23] for me or high erudite. So please don't judge me. LOL.

Dr. Correa:
I don't know if Top Chef is so erudite, but it's kind of a fun competition and just because I like cooking. And at the same time, I like to see the antics of the British Baking Show. So there's a variety of things. But a while back, and now my in-laws like to watch a lot of the music competition shows, but they pre-record them, I guess, to whatever the platform they're using and just fast-forward through all the talking and the commercials and just want to see the performances. I always think, I'm dizzy sitting there watching them fast-forward through all the show. And I'm like, I don't even know what's going on. They're just watching all the singing.
And as many of you may guess from the music introduction for today's episode, this week we're joined by a singer and musician that you may have seen on American Idol, James Durbin. He joins us to talk about his story and experience with Tourette's syndrome and autism. And at the start of the episode and throughout this episode, we will get to enjoy clips from his newly released single Paradise. I hope you enjoy.
Welcome back to the Brain & Life podcast. Our guest today, as you've already noticed from the music featured, is a singer and songwriter, James Durbin. He first captured national attention with his vocals and fearless stage presence, but behind those performances, every day he lives with Tourette's syndrome. James has spoken openly about what it's like to navigate tics in daily life, how stress and other people's reactions can amplify symptoms.
The stigmas he's encountered and why music and performances can sometimes quiet that noise. James, thank you so much for joining us here on the Brain & Life Podcast.

James Durbin:
Thanks for having me, Doc.

Dr. Correa:
So how is it that your story of getting out to the stage and performance? Where did that desire for performance and music come from for you?

James Durbin:
Growing up, I knew that my dad was a musician. That's kind of like all I knew about my dad is that he was a musician. He had tattoos. He looked like a cool guy, rode a Harley. But I didn't really know him. I never really got a chance to get to know him. And so that idea struck me. And then I have two older sisters and one of which was doing musicals in high school. And I'm about eight years younger than my oldest sister. And I'd go to these shows and I'd watch and I'd just be like, wow, I want to do that. I really, really want to get up there because I'd always be singing and naturally just harmonizing to whatever thing I listen to. And between my tics and things before I was diagnosed, I would just long to be on stage and finally I got my chance and all the high schoolers brought me up on the final night of the play and they didn't just have me be a part of the ensemble.
They pushed me up to the front of the stage and that was just this moment where I was like, "Oh, this is my stage." And so I just took the lead and I worked the stage and I was singing <<while we think about the game, the game>> from Damn Yankees. And so I noticed something in me is that I didn't feel nervous. I felt this calm come over me and I felt more like myself than I ever had before.

Dr. Correa:
And how soon after that did you start with the tattoos?

James Durbin:
Temporary. Temporary tattoos immediately following. Yeah.

Dr. Correa:
And then after that, you knew you wanted to continue in performance and music. And now having had that opportunity, do you feel like your image of being a performer and a musician that you had in those teenage years is anywhere near your experience now?

James Durbin:
Oh yeah. It's definitely exceeded what I thought would happen. There's no limits to your imagination, but I definitely, as I thought that it'd be cool to experience something like Michael Jackson being on stage and people screaming and passing out and losing their minds, I didn't actually think that that was something that would come to pass. And then it wasn't a lot of those experiences, but I have had that experience between American Idol and my hometown homecoming and we went to the Philippines and just different things I experienced early on in the idol days definitely rivals that. And I was like, whoa, like be careful what you ask for. It's a little much.

Dr. Correa:
Yeah. I can only imagine really in this situation. And I think we all have so many different reasons why we might question whether or not we want to be the one on stage giving up speech or presentation, let alone a performance. But you said it's something that for you earlier on, you didn't really think could come true for yourself. What would be some of the reasons? I mean, some people might guess it's because of the tics, but as a kid, look, what were the things that you think held you back from thinking that could be a reality?

James Durbin:
For me, honestly, it was my diagnosis. And so I lost my dad at nine years old and then I was diagnosed shortly thereafter at 10 years old at Stanford. And I basically, the way that I heard it was, not only do you have Tourette's syndrome, this is all said to my mom. So it sounded probably like the adults in the Peanuts cartoons, a lot of ... "So, you have Tourette's, not only do you have Tourette's, and here's a big old case study on Tourette's, but you also have high functioning autism. So here's a huge case study on high functioning autism," and it was all just medical speak, and there wasn't a lot to really get from it as far as like, here's something you now have, here's a big manual that says everything wrong with you, and not really how to live with it. Just kind of hearing like, "You probably won't work a job. You probably won't drive a car. You probably won't live outside of your mom's guidance." And that one scared me the most.
But just probably won't have a family, probably won't have these different things. This kid is going to be kind of dependent. And thank God that that didn't happen. I'm just really, really blessed and grateful that that's not the course that my life took. But I still, beyond just being told that, like already feeling different and then being diagnosed different and then medicated different, which then in turn made me extra different because I had no prior knowledge of the person I would be on medication. And then yeah, just trying to figure out like who you are and what you like and what you're good at despite a label.

Dr. Correa:
And going back in that year or so, and as we can now as adults think back to our memory of who we were as kids, do you remember the first time you realized that your body was doing something you didn't choose and what that was like?

James Durbin:
Not really, but I look back and I've seen footage, like home video footage. You'll see I have a ... The listeners can't see it, but I have a little TV VCR combo behind me in my studio. And I recently inherited the box of VHS tapes. I demanded them really. But one thing I noticed is in addition to my mom always rolling the camera so often, was that like even as early as three years old, four years old, taking a bath and doing this kind of like lip to my nose thing like that. And I've, gosh, that's probably been my longest going tic. And even looking back then, I still had it. It's just pretty crazy. It's kind of mind-boggling. There's been whistling, there's been squinting and puffing up my cheeks, and that one's a little annoying because it gets a little interrupted when I'm talking to people. And it's a big one where people are like, "You okay?" I was like, "Yeah, man, I got Tourette's." I'm like, "Oh, all right, nevermind. Didn't mean to pry. Sorry, [inaudible 00:10:20]."

Dr. Correa:
Do you remember when you first had a tic that you noticed that, "Wait, I'm like, I don't mean to do that, or that's not a movement that it's normally what I was thinking that it would be part of what I'm doing right now."

James Durbin:
Yeah. There was like a squeak that I had, like a bark kind of ... It was never coprolalia, and unfortunately I was diagnosed around the time when any situation of Tourette's was pictured as swearing and I couldn't get away with that. No one would let me get away with that because they knew that I didn't have it, but people certainly acted like I did.

Dr. Correa:
And maybe it was at Stanford or before or after that, but when you first had words to describe it in terms of the Tourette's and the tics, what changed? You said for you, you had all these things that were given to you and it was like kind of the Peanuts description of what you were hearing, but when and what do you feel like actually changed for you in that context?

James Durbin:
Well, I already felt like I was different. I already felt like I belonged somewhere else. I felt alien or other and just the way that I fit in or didn't fit in at school and then already being the kid that ADHD and ADD and just kind of the candy bowl of issues and single mom, divorced parents, dad passed away, youngest, all the things. I had everything going against me in a lot of social situations where people were less than favorable. But yeah, I'm not sure how it or when the exact moment was.

Dr. Correa:
And you bring up this, that we're all such a combination of stories and some of them might be conditions and this candy bowl, often all these things are described separately and you shared and described how you have high functioning autism, you have Tourette's and tics, probably other aspects that fall onto what everyone describes now as neuroatypical. Do you see any of these things as like, "Oh, this is a very distinct part of what I deal with," or is this just all part of James?

James Durbin:
I think it's just all part of James. James these days is just back then Tourette's and Asperger's had me and these days, those are just things that I have. I carry them with me. I deal with them day to day. My wife deals with me day to day. It's just all part of who I am. At a certain point in my youth when I was a teenager, because I was diagnosed when I was 10 and I remember my mom had talked about like that there was, because at that point she, single mom, my older sisters were kind of out of the house and it was just down to me and my bag of surprises because you just didn't know what you were going to get and I think that was partly due to hormones, partly due to me figuring it out, dealing with people at school and then also just the after effects of the medication that I was on.
And I was on Zoloft and Clonidine and I just didn't like how it made me. I didn't like how it made me respond or react and how I was on it and I was falling asleep in class and I was aggressive, I guess, when I normally wasn't. So all of this kind of built up in a certain age of 15 or 16, I decided that if these conditions are so horrible to live with that I have to take medication, let me experience how horrible they are without medication. So I stopped taking my medications cold turkey and I got to know who I really was. I was like, "Oh, well, this is manageable. I'm not a monster. I'm not like, this isn't some demonic possession." I squeak and bark and whistle and blink and have trouble making eye contact with people in conversation, all things that I can work on, all things that I can get to know and get used to and whether I can control them or not, or I'm in control of them or not.
If I really, really focus, I can kind of be in control of them. Another thing that happened was around that time, because I've always done musical theater and performance and singing and playing in bands and things, choirs. I had a great community theater teacher by the name of Robin Aronson here in Santa Cruz. And she talked to my mom and found out about my diagnosis and she did her own research and did her own study on it. And she saw something in me that when I was on stage or when I was rehearsing and practicing as in character for whatever show it was, that I didn't have those things. And she kind of talked to me and she was like, "When you're playing a character, are you giving that character your attributes? Are you giving that character Tourette's and high functioning autism?" I was like, "Well, no, I didn't really even think about that. Obviously they wouldn't have that, so I wouldn't ..."
And so it was this brain thing of thinking of if you're in character and you don't have these and you're more in control of your brain because you're performing, find a way to not perform in life, but find your character. You can write your character. You can choose your character in life. You can turn it on, you can turn it off, you can essentially play the role of yourself if you have to. And that really connected with me and I found ways to kind of turn it off, quote unquote.

Dr. Correa:
I mean, absolutely. And such an amazing perspective and teacher to have at that stage of your life. I mean, I imagine it's not going to be her, but so many of us through many stages of our lives, especially as our adolescents and teenage years, feel that there's so much about the world, culture, society that we're figuring out and that the world is trying to figure out about us. What do you wish adults understood about your experience back then?

James Durbin:
Oh man, I don't know. I really don't know. I mean, what I've also got to consider is that adults, I'm an adult, so anybody that was there was also a kid and figuring it out and they were on the receiving end of it. I wish adults back then would have just been more forgiving and understanding and patient. And I guess it's a little different when suddenly the kid that's always late to school and you already have this predisposed thought of this kid that if they're a bad kid or they're distracted or they're late or they're lazy or whatever it is. And I wouldn't say that I was all of those things. I was a couple of those things, but there was things that were causing those. And then suddenly you have an IEP and a 504 plan and all these things to benefit you and to help you succeed.
And some of the people around me were just kind of like, "This kid, get him out of here." But fortunately there were more people that were attentive and responsive and saw that like, "Oh, when he's drawing, he's not ticing. When he's performing, he's not ticing. When he's singing, he's not ticing." When he's engaged in something that he's giving his true self to the extra stuff isn't there. There's no energy to give to it because all of the good energy is being given to the performance or the creation of the art. And I'm really fortunate enough that there were so many art programs offered at my schools and my mom found all of the extracurricular community programs of choirs and theater groups and all sorts of things like that and was able to get me scholarships for because we were very, very low income, very low income. So it takes a community and I've got a good one.

Dr. Correa:
I think we all need really that village to help us and support us throughout life.

James Durbin:
Every village needs its idiot and that's what it takes. I'll be that guy.

Dr. Correa:
In terms of your peers, I mean, you've talked about bullying and stigma that you've lived with, but what do you feel like people got wrong most often and what helped you keep going?

James Durbin:
I feel like people thought that I was faking, I don't know, of that being a thing or sometimes a difference, being different in a school that isn't ... Because my kids, they go to a school that really focuses on bullying and tries to stamp it out before it happens. And that's been great. And I've loved to see that. And I've been a part of some anti-bullying and pro kindness campaigns with different groups. And I love to see it because it's great to be able to share your story and impart some of your wisdom of how you learn to get through it or avoid it or any of those things. I wish that I maybe had the wherewithal to know that I could diffuse or I could take away their ammunition by making fun of myself first. And I think I took myself seriously. I still love pro wrestling.
I loved pro wrestling as a kid and I'd kind of like daydream about like sticking it to the bullies and like cutting a promo on them and then giving them a Stone Cold Stunner, which I never did because you don't try it at home. But I guess I just kind of took myself too seriously and I just wish that I would have had the wherewithal to be like, "I beat you to the punch. Yeah, I whistle. Yeah, I squint. "Yeah, just kind of like the end of Eight Mile when Eminem wraps all the things that everyone says bad about him behind his back and then nobody has anything to say after that, tell these people something they don't already know about me. I wish I would have had that, just kind of like this Oscar winning performance to really stick it to people.

Dr. Correa:
It is a lot to put on your 12, 13, 14 year old self, "I wish I could have done an Oscar winning performance."

James Durbin:
Yeah. I wish I had great writers, that's what I would say.

Dr. Correa:
There you go. And you've shared many depictions that we've seen in media have shown and physicians and scientists explain that stress and pressure can amplify tics for many people. But for you, what are the situations that tend to turn up that volume and what reliably turns it down?

James Durbin:
I get nervous before every performance, every gig, even every interview. I guess a little bit of meditation always helps finally doing the thing when your anticipation of something and that kind of causes anxiety, but once it finally settles in and then you can just kind of breathe and be you. I love coffee, so that's not good.
I love coffee, but stimulants don't help. I love beer too and beer doesn't help, but I guess it's just, I just live with it. I don't try to stamp it out too much. Sometimes there's good things that I can take like GABA. I love taking GABA for that sort of thing. Magnesium is great, just kind of relaxes the mind. And years ago before I did American Idol, my wife and I, we went to a health food store and went in their supplements department and the woman in there suggested GABA, which comes from a root, G-A-B-A. I just find it's such like a ... It just hits me. It just hits the frequency that I'm on and just kind of like, oh, thick, maybe a little one. And it feels good and it's all natural and I enjoy it. So I've always tried to kind of go like a homeopathic or Eastern medicine route on things as it comes to my nervous system.

Dr. Correa:
And for our listeners following this, we'll be discussing with a medical expert some of the diagnosis, treatment options, both the treatment options that are pharmaceutical or prescription and some, and discuss what we know about the homeopathic options. And you mentioned on stage playing that character even as a teenager, but for those of us who've seen you on stage or online, fans have noticed that when you sing, your tics calm down. What does that feel like for you on the inside, that control, focus, flow, or relief that you get?

James Durbin:
If I could sing everything, that'd be fine. I'd just be well off. I'd probably be better spoken, better understanded. I'd probably say it right the first time.

Dr. Correa:
James Durbin, the musical.

James Durbin:
Yeah. I wish my life was like ... I'd sang everything like a Disney Princess. It'd be great.

MUSIC:
I'm on my third cup of coffee, third cup today.
I walked by the bathroom.
I said it can wait.
I've got to do an interview, Brain & Life when I sit here in my studio, talk about myself.

James Durbin:
Yeah, something.

Dr. Correa:
I'll see the show.

James Durbin:
Yeah. Yeah. It's always a show. Sometimes I have to be on and that can also be stressful, like having to be on for too long, if I'm on stage for two hours, three hours, and then getting off and suddenly there's kind of input and people want to talk. It's like I'd just rather go change and get in the car and drive home. And a lot of the time I do get that. A lot of what I do these days, playing in a lot of big cover and tribute bands and where you're playing a sold out show to 800 to 1,500 people a night. And then you just go back to your dressing room and you change and then you get in your car and you drive home two hours. So that's a lot of what I do these days and it is a nice routine because there's kind of no time to tic on stage.
You're only out there as long as you're out there and you're on the whole time and then as soon as you're done, you're basically back in the car by yourself and I can tic all I want. So if my nervous system needs to just kind of like decompress, I have that time and that space to do so.

Dr. Correa:
And are there things that you find most helpful for you for that like recovery, recharge and decompression?

James Durbin:
A good podcast or some music. Depends on if I've really put a lot of myself out singing. Sometimes I'll sing afterwards. It just depends. But usually a podcast or just listen to the wind. Yeah, I like that.

Dr. Correa:
And take us back to those first few times you stepped out onto national stages online for, or I guess in front of the camera for American Idol. What was it like in that context, knowing that you have Tourette's and these people out there, the audience, the judges don't know you in that way?

James Durbin:
I cringe because I look back at Idol and it was such a stressful time. I mean, I'm born and raised Santa Cruz, California. Up to that point, I had been on a plane one other time. I went down to Hollywood Week on my 22nd birthday. We get down to Burbank, we drive to Pasadena, which is where Hollywood week was, not in Hollywood, nowhere near Hollywood. We were in Pasadena. But just like this brand new situation, you have no idea what's next, a lot of stress, a lot of piped in stress. Obviously it's a TV show and they look for personality types and quirks and things and exploitables and they see a kid that makes faces and interesting sounds every time he's stressed and they put him in a stress vacuum and there's so many, I've seen videos and I'm just a ticing machine and just squeaking and whistling and grunting and doing like big ones with my face and like doing this and like just a, it was like a nightmare for Tourette's.
It really was. The opposite side of that though is that I, unknowingly, I wanted to do that for me. I wanted to do that for my family, try and give myself a chance to live my dream and make a living at doing so. And not realizing that across America and all around the world, there were kids that were like me when I was a kid. And they were getting home from an awful day at school being tormented and bullied and not being able to control themselves and having no control over the sounds and the movements that they're making. And they get home, maybe they get finished crying, they go eat dinner, their mom is watching American Idol and they're like, "Oh my God, you got to get in here. There's this kid, he's just like you. He's singing, he's on TV, he just made it through. He's singing again. He's on TV. He just made it through. He made it through, he made it through. He's going to be on tour. We get to go see him. We get to go see ..."
Just being somebody like that for kids, for anybody and adults too, because I didn't have anybody that I could turn to when I was a kid and be like, "Look at that guy. He's a living, breathing, singing, standing embodiment of anything that I want to do is possible regardless, regardless of this hurdle in my life, this wall that's standing in front of me, I didn't notice before that it had a doorknob and I can just open it and walk through. It doesn't matter. I'll have it on the other side as I have it on this side, but there's no reason why I can't go to that other side." And being able to be that for people was just like, whoa, perspective. It's all perspective and wisdom and being able to have that was something else.

Dr. Correa:
Yeah. It's so great to hear and to see that so many more people have these opportunities to see that hope and those examples. Well, James, thank you so much for joining us today, giving us a few tunes along the way. And really your story I think is an inspiration to all of us who see limitations and who we can be.

James Durbin:
Well, thank you very much. I appreciate you having me, but I try not to look for the limitations these days. I look for the way around or the way through. I look at my diagnosis and my life as kind of like the difference between Lego sets when I was a kid and Lego sets now. When I was a kid, it was just a box and you open it up and you spill all the pieces out and you just have this pile of pieces you got to sift through and find what you're looking for. And these days, everything with my diagnosis is for people just getting diagnosed now or family members or kids or you yourself living so long undiagnosed. These days, Lego sets come with every step is in its own bag and you can open that bag when you're ready. You can work on yourself little by little.
You don't have to try to have everything all figured out right at the beginning. You don't have to look at this mess and be like, "Oh, it's a spaceship." You can look at each step one by one and be like, "There's the cockpit. There's the thrusters. There's the rocket itself." That's the part that's going to space. And you can build yourself up little by little. And I think that's a beautiful thing.

Dr. Correa:
Couldn't be better said. Thank you.

James Durbin:
Thank you.

Dr. Correa:
Are there questions you have about living with and thriving with one of many neurologic conditions? We're excited to start taking your questions and feedback and sharing those responses here with you on the podcast. You can also email or record an audio message and send it to blpodcast@brainandlife.org. And of course, you can also reach the Brain & Life team at BrainandLifeMag. That's M-A-G. I really appreciated both James singing to entertain us, but then also his sharing of his story and his journey and joining us now to reflect and discuss on Tourette's as well as aspects of James' story is Dr. Tamara Pringsheim is a neurologist and clinical researcher at the University of Calgary who specializes in Tourette's syndrome and tic disorders. Dr. Pringsheim is known particularly for bringing clear evidence-based guidance to questions families and adults have about living with Tourette's every day. That includes how tics can change over time, stress and attention, influencing symptoms, and how to choose between behavioral therapy and the many other medication and supportive therapies.
Tamara, thank you so much for joining us today.

Dr. Pringsheim:
Thank you so much for asking me.

Dr. Correa:
So this would be one of our first episodes, really getting into this condition and tic disorders. So I wanted to know, when you speak with a person in the community or a family member who doesn't have a personal experience to understand it or know about Tourette's syndrome and tic disorders, how do you explain it?

Dr. Pringsheim:
Yeah. So Tourette's syndrome is a childhood onset neurological condition. I'd say the majority of people are mildly affected and many people never actually come to medical attention. It's characterized by the presence of tics, which are repetitive movements or phonations, and tends to run a chronic course in childhood, which in many people improves in the late teens. About two-thirds of our patients will have a substantial improvement in symptoms by the time they reach adulthood, and then about a third of patients will continue to have symptoms throughout adulthood and may require ongoing medical care. I'd say it's a misunderstood condition by the general public. I think most people don't understand the fact that Tourette's syndrome symptoms are mild in most people, and that the lay public typically associates Tourette's syndrome with severe symptoms like coprolalia, which the majority of our patients don't have.

Dr. Correa:
Yeah. And I mean, that rings true along with James' own experience. And the contrast even to some of both materials and information he received and his parents received, he remembers as a child, like having that early impression that there wasn't a whole lot he was going to do. He was going to be relatively incapacitated. And my hearing from you that not only are the majority of people mild and can be well managed, but sometimes many people don't even come for medical attention, which tells you it wasn't that much of a disruptor in the first place.

Dr. Pringsheim:
Yes. The most common motor tics we see are simple motor tics involving the face. So eye blinking, opening the eyes wide, wrinkling the nose, movements of the mouth, small movements of the head or shoulders. And we all know people who do that, right? But don't see a doctor for it. But those are tics and tics are common. And the most common phonic tics are throat clearing, sniffing, and coughing. And again, we all know people in our lives who do this, but don't identify with it being a disorder. "It's a tic. It's something that I do, but I'm going to university, I'm a surgeon, I'm a lawyer and I'm going about my business." But some people are more severely affected and come to medical attention for diagnosis or because of the comorbidity that's so commonly associated with having a tic disorder, the majority of people that we see with tics will have a comorbid psychiatric or mental health condition that may require more attention than the tics.

Dr. Correa:
And a lot of those movements that you described as some of the common tics that someone might have, our small movements that are integrated to all kinds of other aspects of our day, we heard James describe what it feels like for him and what the difference is between a tic, but I would love your perspective on how you both explain that or describe it to individuals and their families. What about a sniff makes it a tic versus just a quick cough or a little sniff that I'm doing normally?

Dr. Pringsheim:
Yeah. So most people with a chronic tic disorder will describe an irresistible urge. And it's like the feeling of itch you get before you scratch, right? Your brain says, "There's something going on here and you need to do something about it." But all that happens in an instant and often there's little thought that is put into it. So tics by nature are repetitive. It's the frequency of the movement or phonation is repetitive and it's purposeless other than to satisfy the need to do it, right? So people with a tic disorder perceive this need or urge to repetitively make a certain motion or sound that in and of itself has no functional purpose. So you and I may cough if we have a cold or we've just eaten and we need to clear our secretions where someone with a tic disorder will repetitively cough outside of that physiological need.
They may just perceive that something there isn't quite right and so I need to cough, but there's nothing actually there. There's no secretion. There's no throat pain, right? It's like a strong sort of urge to do this, right? And sometimes with some of the more simple tics, like blinking is one, for example, we all blink and blinking has a purpose. And in people with a tic disorder, the frequency of blinking is, if they have a blinking tic is elevated considerably and the force with which it's done is stronger.
It can look very deliberate, very prolonged, forceful, and they lose that sense of urge. They say, "The blinking ticks I don't feel so aware of." They become sort of automatic and entrained over years of time. I see this quite often in adults who have had a blinking tic for 20 years, right? They may not necessarily feel this sense of urge or agency for all of the tics.

Dr. Correa:
Now, and we've had some other episodes where we discussed something that's called dystonia. So is the dystonia and that kind of miswiring of an integrated movement at all similar to the concept behind a tic?

Dr. Pringsheim:
Yeah. I mean, we conceptualize these as different movement disorders, right? The output can look quite similar. And sometimes I'll get referred somebody who has blepharospasm asking, "Is this a tic?" And so the phenomenology of the movement is quite similar, like frequent blinking, forceful blinking, but the history is different, right? So the patient with blepharospasm, typically it's adult onset, people in their 40s, 50s, 60s, and the symptoms are quite localized to the eyes where someone with a tic disorder, the history's quite different. It's childhood onset, typically before the age of 10, the symptoms wax and wane, so they have good periods and bad periods, and they have other repetitive movements that go along with the blinking. So they'll have sniffing, throat clearing, shoulder elevation, and that's really how you make the diagnosis is the when did it start and the company it keeps.

Dr. Correa:
That is helpful. And for our lay listeners and community, you mentioned blepharospasm. So that is a dystonic eye closure or more of a forced eye blink that can occur for some people that's similar to some of the other dystonias we've discussed before. And if you want to look back, take a look at our episodes of running dystonia and some of the other dystonias. And to clarify or even correct my own understanding, I've always had the understanding and sense, both in discussion with other individuals and patients that the tic might interrupt another function. That release that comes by doing it sometimes allows them to help to continue on with some other, whether it's their speech or some other activity.

Dr. Pringsheim:
Certainly looking at your example with speech, sometimes we see physical concomitance in people who stutter, right? And the literature on that is not large, but it's ... Again, I see people in my clinic who are referred to me for tics, but they actually have stuttering and physical concomitance and they can look really, really similar. And it can be hard to tell the difference between a tic and a physical concomitant of stuttering, right? And so you said ... I just want to get back to this because I don't know that I truly understood your question. You're saying that in some people, tics serve a functional purpose to allow them to do other things. Is that what you're saying?

Dr. Correa:
That was part of how I've often seen or understood it, but I'm wondering maybe that itself also is not necessarily always the case.

Dr. Pringsheim:
I mean, everybody's individual experience varies quite a bit. I'd say that most people would say that the functional purpose of a tic is to relieve the discomfort that they associate with the urge, right? So I get an uncomfortable sensation in my shoulder. I feel like it's itching. I feel like there's pressure and I do this to get rid of that feeling. But other than that, it's purposeless and I don't want to have the urge, right? The urge is not ... It's not egosyntonic, right? It's not like I'm enjoying doing this. I'm doing it because I've got an urge, I've got an itch and doing this gets rid of that urge even if just for a few seconds before it comes back. Stereotypies, there's a different ballgame with stereotypies. Stereotypies are a bit more egosyntonic, right? So complex motor stereotypies, we see them in children with autism, we see them in children with other neurodevelopmental disorders, and they're typically really early onset.
They typically start in infancy. So before the age of two, they're rhythmic. It's like rocking, flapping, finger wiggling, this sort of thing. And stereotypies are more often associated with some sort of functional gain outside of an urge, right? So people will say, "I do my stereotypy because I'm excited and I'm releasing that energy. I do my stereotypy because I'm working through a complex situation in my mind or I'm imagining playing a game or a trick on somebody and I'm excited and this is like enhancing the experience somehow or it's a way of releasing anxiety or stress." So I hear that a lot more often with stereotypy rather than tic.

Dr. Correa:
I can see how they fall in very differently, but they might end up co-occurring in so many individuals.

Dr. Pringsheim:
Yes, especially people with autism, right? So in people with autism, we can see both stereotypy and tic. Within my own clinic, I'd say probably 11 to 12% of my patients that were referred to me for tics also have autism. And then if you look in autism samples, anywhere from like 20 to 30% of people with autism have tics. And so they'll have tics and stereotypies and people can't always tell the difference, but the key is age of onset. Stereotypies are often bilateral and rhythmic and they tend to occur when people are engrossed in an activity mentally, whereas tics tend to subside when people are engrossed, right? So it's like the surgeon from Oliver textbook who is performing surgery or flying a plane and has no tics in that situation when they're on, right? And they're in the flow of this complex demanding task, right? The tics go away, right?
Whereas the stereotypies are more, I'd say, automatic. Often with stereotypies, people aren't actually aware that they're doing it. And for that reason, they tend to persist longer. They tend not to resolve to the same degree as tics. Yeah.

Dr. Correa:
Now, when it comes to James' own experience, he also described how vocal and motor tics can differ with different habits or different compulsions or in different nervous situations. How often do you see that and does that vary between individuals?

Dr. Pringsheim:
Yeah. So we know that contextual factors are really important in the expression of TICs and that's like part of the basis for the comprehensive behavioral intervention for TICs, right? So the comprehensive behavioral intervention for TICs is a manualized cognitive behavioral therapy that was developed specifically for tic disorders and its main components consist of habit reversal therapy and a functional behavioral assessment and intervention to address the antecedents and consequences of tics. So the majority of people with Tourette's syndrome are able to describe antecedents to their tics and those antecedents can be internal or external, right? So an example of an internal antecedent, so that's something that seems to precede the expression of tics would be anxiety. Okay? So you're in a situation, you're feeling super anxious, like maybe making a speech or you're playing hockey and you're like waiting for the puck to drop, right? So you're excited.
Many people in that situation of excitement or anticipation, that internal feeling of excitement or anxiety will report that their tics ramp up, right? And then there's external antecedents. So that might be certain situations where people's tics are worse. So perhaps there's like a movie theater, right? The person's in the movie theater and they feel like they have to be quiet. And if they make a noise, everyone's going to look and it's going to be really embarrassing. So they're on sort of high alert, right? There's this sort of spotlight effect that the more you feel like I must not do it, the more it actually happens because you're thinking about it. Most patients with even little kids will tell me, "If I don't think about it, I don't do it." So if I'm engrossed in activity, if I'm in the middle of play, if I'm singing, if I'm playing my guitar, I'm so engrossed that they don't happen.
But in the lead up, I'm waiting, right? Like the audience is sitting down or I'm waiting for my part to start. There can be a lot of tics in that situation, in that anticipation phase, right? Yeah. So contextual factors are important.

Dr. Correa:
Yeah. And that fits so well with what James was describing, both before a performance, offstage, as he described, ticing away there. And it's not until he gets the opportunity to either practice the warmup or step out onto stage that it seems like that play, that singing, that performance effect helps him. And it's interesting that in some other people, that a spotlight of that situation, it may be an amplifier. It sounds like it can vary so uniquely to each person's, both management and triggers, but how do you explain or try to help people explain and those around them understand without implying that they can just control it?

Dr. Pringsheim:
Most people describe the urge to tic as really an irresistible urge, right? That the urge to tic is not voluntary, right? Again, the itch before the scratch is really a great example here is that when you get an itch, the itch is involuntary, right? It's your brain telling you something's going on here and your response is to reach over and scratch, right? And it happens quickly. It's like the amount of time between experiencing the itch and doing the scratch, it's almost instantaneous, right? I mean, there's some situation where there can be a delay. I give the example of, I've got a heavy grocery bag in each hand and my nose starts to itch and the grocery bags are too heavy for me to actually reach my nose. And so I'm just like, I'm uncomfortable. And as I'm walking to my car thinking, "Oh gosh, my nose is itchy, but I can't do it."
I'm like physically restrained from doing it. In some situations, if you can experience the urge to tic without doing the tic, eventually the urge will start to come down, right? And that's the basis of the cognitive behavioral therapies we use for tics, that if people habituate to the urge that eventually the urge will come down, you're sort of disrupting that negative feedback cycle that occurs in people with tic disorders, but tics are involuntary. The urge to tic is involuntary. And I think that's the important thing to emphasize to people and that the content of the tic is meaningless and purposeless, right? If I'm winking repetitively, I'm not doing that to try and get your attention. It's an urge, right? And I'm trying to relieve that urge by making the motion, right? I'm not doing it to get a reaction from another person, right? Does that make sense?

Dr. Correa:
Yeah, absolutely. And you've mentioned and pointed out a few places of how Tourette's doesn't really travel alone. You've mentioned both autism traits and ADHD. It might come with obsessive compulsive disorder or symptoms and anxiety or sleep issues. So in your approach, how do you decide what to treat first?

Dr. Pringsheim:
Yeah, let the patient decide, right? Yeah. Like my initial assessments with patients are two hours long and I do standardized questionnaires looking at basically psychiatric symptoms across DSM-IV conditions. So looking first, assessing for symptoms of OCD, ADHD, anxiety, depression, substance use, sort of across the spectrum, just knowing that many people will have symptoms across multiple different domains. And then those questionnaires, I use standardized questionnaires. The one that I use in children is the Conner's comprehensive behavioral rating scales. This sort of flags to me areas that are of concern, and then I hone in on them. So I may spend like in two hours, I may spend sort of half an hour talking about the tics and then I'm going after the other areas because in many cases it's the other symptoms that are more bothersome. And it's like I always sort of finish my history and by asking, "We've talked about many different domains or areas where you're struggling. Which is the most important, which affects your quality of life the most? Where do you think we should start?"
There may be multiple priorities, but we start with one and we go from there. If the anxiety is the major symptoms, sometimes after we treat the anxiety, the tics come down. Sometimes if ADHD is the major symptoms, sometimes when we treat the ADHD, the tics come down. So I start with determining the priority with the patient and going from there.

Dr. Correa:
In a few places you've mentioned, we've mentioned both suppression or resisting the tics. Many people have described that may come with like fatigue and rebound. How do you share and discuss the costs of suppression?

Dr. Pringsheim:
Yeah. Yeah. It's challenging, right? For sure. I recently took the therapist course on how to do the comprehensive behavioral intervention for tics at UCLA with John Piacentini who ran one of the pivotal trials in this. And so I've started doing therapy with patients and it's challenging, right? Because you have to practice consistently and that takes time and effort and it takes time to see results. Many patients can do it, but I think it's difficult to engage in constantly and it takes time before it becomes automatic to resist and then for the urge to start dissipating. So it's challenging, but many people can do it, right? And we have good evidence to suggest that it's helpful and that the effects are enduring, right? Obviously for a very young child that is not bothered by their tics, we're not going to do behavioral therapy, right? It's not impossible.
There's some data showing that you can do it with a four-year-old, but I'd say that in the majority of patients, there are probably at least nine before we start. If they have severe ADHD or intellectual disability or autism, it could be a challenge, right? And the tics have to be functionally impairing enough that there's the motivation to do it, right? If one doesn't feel like the tics are a problem, there's going to be no motivation to engage in the treatment. Yeah.

Dr. Correa:
You need that motivation and a clear understanding of the next steps, the management, possible side effects and balancing it all out so that way they can really feel a part of that plan. And I wanted to see if we could leave off with maybe you helping us retire maybe two or three myths about Tourette's today, and what would they be, whether it's for friends and community members or individuals who are they themselves living with tics?

Dr. Pringsheim:
Myth number one is that all people with Tourette syndrome have coprolalia, right? Caprolelia is the repetition of offensive or aggressive words or statements, right? So I'd say that's myth number one. When we have a registry of people with Tourette's syndrome, children and adults, there's over 700 people in the registry. The number of children who have coprolalia at their first clinical visit was 6%. The number of adults who had coprolalia at their first clinical visit was 9%. So the majority of people with Tourette's syndrome may never have coprolalia. So I think that's an important one. I think another myth could be that Tourette syndrome lasts a lifetime. We do see substantial improvement in people with time, right? Their tics may not disappear completely, but they may no longer require clinical attention. They may not be noticed by anyone other than the patient and their mother. So we do see substantial clinical improvement with time.
The last one is that all tics require treatment. Yeah, they don't, right? tics require treatment if the patient is experiencing emotional distress, physical discomfort, or social embarrassment, and only the patient can tell you themselves if they feel that way. So that's why it's important to ask, right? Are you experiencing any of these things and is it sufficient enough for you to want to pursue treatment?

Dr. Correa:
Yeah, I think that's perfect and particularly speaks to so many of the things that we see displayed very differently on TV and in different communities and fits also along with how James has experienced his own progress and now opportunity to sing and perform nationally and internationally. Thank you so much for joining us, Dr. Tamara Pringheim, and really appreciate everything that you're doing, both to study and push the science forward to understand Tourette's and tic disorders and also supporting the community.

Dr. Pringsheim:
Thanks for asking me. It was fun.

Dr. Correa:
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Dr. Correa:
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MUSIC:
Breathe in need all over, and exhale all our worries and never have to go to far.
So you bring the hazies I bring the rollies fogging up the clear blue sky.
We ain't got to go nowhere, as long as you're here.
Paradise is where we are.
Yeah, we live, yeah we already arrived on this vacation.
I feel it, turn it on.
Do it, positive vibration.
Somebody turn up the [inaudible 01:02:10].
So we can swing back and forth to your new favorite song with the rhythm of acoustic guitar.
We breathed in and all over, and exhale all our worries.
And never have to go.
You never have to go.
So you bring the hazies I bring the rollies, fogging up the clear blue sky.
We ain't got to go nowhere, as long as you're here.
Paradise is where we are.
We ain't got to go nowhere, as long as you're here.
Paradise is where we are.
So don't go nowhere, because as long as you're here, paradise is where we are.

Living Loudly With Tourette Syndrome: James Durbin’s Story of Finding His Voice Through Music

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