The UpTic

Tics, Tech & Trials: Breakthrough Neuroscience Research for TS and OCD

• New Jersey Center for Tourette Syndrome and Associated Disorders • Season 2 • Episode 36

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In this episode, I’m joined by Dr. Christine Conelea, a brilliant research psychologist from the University of Minnesota, who's leading the charge in cutting-edge research around Tourette Syndrome (TS), OCD, and anxiety. We dive into the transformative innovations happening in her lab—from developing computer vision tools that can detect tics via video recordings to clinical trials testing the effectiveness of CBIT and brain stimulation therapies like TMS.

Dr. Conelea shares how her team is using AI to identify motor and vocal tics and how this research could improve diagnostic access for people across the country. We talk about what’s happening in the brain during tics, how treatment like CBIT and TMS might actually change neural circuits, and the importance of tailoring interventions based on the person’s profile. 

 

Episode Highlights:

[1:00] Meet Dr. Christine Conelea—cutting-edge researcher from the University of Minnesota diving deep into TS, OCD, and anxiety.
[2:20] Why diagnosis delays are such a problem in the TS community—and how her lab is using AI and video data to solve it.
[6:46] How you can participate in their research by uploading videos from the comfort of home.
[8:30] The vision: a diagnostic tool that supports clinicians with objective data from simple video clips.
[13:50] CBIT’s roots and Christine’s journey into TS research—from grad school basement to leading national trials.
[18:40] Exploring why CBIT works for some but not others—how brain inhibition plays a role.
[22:20] A personal story on why I (Michael) stopped CBIT as a teen and thoughts on revisiting it now.
[26:25] The role of TMS (transcranial magnetic stimulation) in strengthening the brain’s “brake system” for tics.
[30:48] Can therapy and TMS reshape the brain? What the early data is showing us.
[34:46] Applying the same neuroscience-driven approach to OCD treatment with ERP and TMS.
[40:33] Advice for newly diagnosed families—and the power of education and demystifying TS.
[42:47] Superpowers in the TS community—how a stronger “habit system” might explain our gifts in music, sports, and more. 

 

 

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Christine Conelea:

We're using this in some of my research, in actually looking at what happens in conversations during c bit therapy. And we can do things with AI now, like be able to say, Okay, were there words spoken? What was the what were those words? What was the content of the words? What was the valence like? Was it positive, negative or neutral? So we are starting to look at vocal tics. And what, you know, it's interesting is there's sort of this, like, semi, you know, in the weeds, argument about, like, Are there actually vocal tics, or are vocal tics just motor tics of vocal areas, right? And so we're also starting to notice that a lot of vocal tics we can pick up on these subtle motor movements without even having to listen to the the audio. So I think when we combine the two, it's we're going to be able to do it.

Michael Leopold:

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. Hello, and welcome back to the uptick. Today, I'm speaking with Dr Christine conolio. She's a PhD research psychologist at the University of Minnesota's Department of Psychiatry and research sciences. Her team is at the forefront of a lot of really groundbreaking research spanning Tourette OCD and anxiety. She's playing a pivotal role in advancing our understanding of tick disorders and creating new diagnostic tools and treatments. Dr konolia, how are you today?

Christine Conelea:

I am really excited to be here. Thank you for having me.

Michael Leopold:

Yeah, excited to have you on the uptick. You know, I so many things we could discuss here and dive into, and your research spans all these areas. One I wanted to dive into initially is just one of the big challenges we have in the TIC disorder space, as you know, is access to diagnosis and long delays in diagnosis that many, particularly children, face. I know your team's been working on some exciting projects to improve this. Can you share a little bit about what you're working on? Yeah,

Christine Conelea:

and as you're you're right, this is diagnosis, and access to diagnosis is a huge, huge problem. We know that it can take between three to 10 years between when ticks start and when folks get a diagnosis. And then we know there are lots of added challenges, of, you know, finding a professional who understands ticks, who gets the diagnosis, who understands the CO morbidities. So it's something we have heard a lot about from the Tourette community, is this need to improve access. And so what my lab has been interested in is sort of asking the question of whether we can leverage some emerging technologies, primarily around the computer vision space. So being able to identify ticks in video is something we have done for a long time in the research lab. So for, oh gosh, it's 15 ish years that I've been doing this. Now, more than that, I think 20 we have been using in our lab based experiments, video recordings of participants to understand what kinds of factors impact how often ticks are happening, how well people can engage voluntary control over ticks. But it's super labor intensive. So in my lab, you know, we're spending for like, a three minute video clip. It's about an hour to to really precisely use computer software to code when all the different ticks are happening, because they happen a lot. So yeah, on average, our participants have like, eight ticks a minute. That's the average. But some folks have a lot more. And so we've always been like, this is, it's such an interesting like, feature of ticks is that we can see them. Can we use this to actually help improve diagnosis? And so we began collecting data, you know, the trek conference, sort of in our lab, and whoever, whoever was willing and were were able to successfully get a grant from the NIH to scale this project up. And so we had an initial study where we looked at videos we had from participants in the lab and showed that we could train computer software to identify eye ticks. And we focused on eye ticks because 98% of people with Tourette's have them. So let's start let's start with that. It

Michael Leopold:

often also starts with eye ticks. In many cases, I think mine, one of my very first ticks was an eye tick, so that makes. A lot of sense to start there. Yeah,

Christine Conelea:

super common story that's often, you're right the first one. And so we we were able to to show that we we could train an algorithm to detect that. We published that finding, and now we are. We also wanted to get past the geographic barriers that I talked about. So we thought like, instead of just having people who can drive to my lab in Minnesota, how do we make this accessible to everyone in the world? And so we have developed an online research platform where folks can just join the study from anywhere they are, at least in the US right now, we're working on international as well, and be able to participate and share with us brief videos so that we can really build a tool that represents a broader range of the direct community, especially folks who aren't able to make it or participate in in person studies. And so the goal, my dream, really, is that someday we will have a way for folks to show up in a provider's office, anywhere they are, do a quick video, and then have the software be able to say something about like, yeah, this person probably, or maybe, has ticks. Let's get them to the right next step for them.

Michael Leopold:

And you know, a couple points there. One is that to our listeners, if you're interested in taking part in this research, we are looking for more. You know, if we're going to try to basically, we need lots of video content of lots of people ticking so the more the merrier for signing up for this. Where can they find, you know, more information on this? Yeah,

Christine Conelea:

that's great. Yeah, we're looking to get 1000 people, which is exciting. So there's information on my lab's website, which is ticklab.umn.edu and yeah, you could do it all, all from the comfort of your own home, on your phone, on your device, and again, like I want to emphasize too how much we're doing this in partnership with the track community, we have a patient advisory board who has been at every step of the way with us. You can see who they are on my website, but really helping to make sure that we're doing this in a way that is thoughtful and responsive to what the Tourette community is looking for in terms of this diagnosis, access. Yeah,

Michael Leopold:

that's a theme I've heard echoed in a lot of what you've shared just speaking with you, you know now, and our last time we spoke just like the importance of making sure the research we're doing is is what the community is looking for and things that we're hearing from, from them in a clinical setting, and kind of, you know, marrying the clinical and research academic sides to make sure that that we're going after the right things, you know, it's interesting, if we have this giant compository In the end of all these videos of people ticking, and then the algorithm can learn, like, what these, these minute little movements and stuff I you know, and what that that what a tick looks like? I guess I know the answer to this question, but I would love to hear you kind of elaborate on it. But is the hope that it would be better than the human eye, like better than a doctor in detecting a tick? Or is it, are there other benefits too around, like, why we might want to have, you know, someone go in front of a screen and get get their tics detected that way, as opposed to, like, a GP or a pediatrician detecting it? Yeah,

Christine Conelea:

that's a great question. And my, my, our intention, is not to replace clinicians. I'm a clinician. I know how that feels, so I'd say a few things. So first, there aren't that many clinical specialists in Tourette's, and that's often a big reason for this gap in diagnosis. Most pediatricians, at best, maybe have one lecture on Tourettes. And so we expect a lot of our clinical providers and being able to have tools that help them more rapidly get to the right diagnosis. I think is, is a welcome topic in the field. And so I think of it again, as this aid. The other thing we know is it's, it's pretty tough. So, so I think about this too in terms of other domains of medicine, like, let's say you have a fever like you can take a thermometer and take your temperature and get a quantitative, like a number readout of your temperature, right? You can take a medication, you can redo your temperature, and you can tell did the number change. The challenge we have when we talk about treatment for Tourette's is we don't have a thermometer, basically, right? We don't. We're kind of at the level of, like, your mom putting your hand on your forehead, like, I

Michael Leopold:

think there's not, like, an objective reading with it and a number. Yeah,

Christine Conelea:

exactly. And it's really hard. We we know that it's tough for people to be accurate in their reporting of the. Ticks, because they happen so much, you know they and so when we do both when patients get treatment and when we do clinical trials of like new treatments, we've been judging whether they work or not entirely based on a subjective report. And so part of our hope also is like, Can this be a tool for those kinds of treatment decisions and trials to really objectively understand better? Like, okay, yes, we know that this new treatment produces this percent decrease in ticks as they're objectively rated. And then the third thing I'll say is, you know, a lot of us also have interest in understanding, like, what are the relationships between tics and the brain, and between tics and people's experiences and the environment? And as a scientist, like, whenever you have questions like that, what you really want are good measurement tools. And I think we've had a lot of really important questions come from the community that we've kind of been stuck on because we're like, we can't, you know, super measure this. So for example, I'm working with my close colleague Deanna green at UC San Diego, to actually have when people are in the MRI brain scanner using video recordings to measure, like, exactly the precise millisecond when ticks happen. So we can really actually go back and look at like what was happening in the brain that led up to that. And so it's like those kind of tools that we've just been lacking that I'm hoping this can sort of help, help fill that

Michael Leopold:

really groundbreaking stuff, like what's actually going on in the brain when I get the urge to tick, or when I can this the video protocol will that also work for vocal tics? I can imagine those being just very complex with regard to how you I don't know a lot of things, but is the focus right now motor tics, or are we kind of we're including vocal recordings of vocalizations as well.

Christine Conelea:

Yeah. So this, this first part of our project. We're focused on motor ticks, mostly of the like shoulder up, because we're kind of starting there with like, how we're sort of detecting the face and head, but we're starting to work on vocal tics. And so there are ways we can use AI and different machine learning approaches to do things like tell us about the acoustics of the voice, so you know how it how pitch and frequency and volume are all changing. We're using this in some of my research, in actually looking at what happens in conversations during c bit therapy, and we can do things with with AI now, like, be able to say, Okay, what is, you know, were there words spoken? What was the what were those words? What was the content of the words? What was the valence like? Was it positive, negative or neutral? So we are starting to look at vocal tics. And what, you know, it's interesting is there's sort of this, like, like, semi, you know, in the weeds, argument about, like, Are there actually vocal tics, or are vocal tics just motor tics of vocal areas, right? Okay, okay, so we're also starting to notice that a lot of vocal tics we we can pick up on these subtle motor movements without even having to listen to the the audio. So I think when we combine the two, it's we're going to be able to to do it. Wow.

Michael Leopold:

That is fascinating stuff. And to our listeners, check out the site. And if this is something that you're interested in, please, we encourage you to get involved in the research can be done virtually in the anywhere in the United States. What are some of the other areas of research that your team is on? I know you have a number of ongoing studies right now. Would love to hear about some some of the other stuff in the pipeline?

Christine Conelea:

Sure. Yeah. So we have some other a couple other studies looking at CBIT. So I'm sure a lot of folks listening are familiar comprehensive behavioral intervention for text, the first line behavioral treatment for text, that's where I got started in Tourette research world. Was working on the original CBIT trial as a grad student. Oh, that's fun in tug ones lab. Yeah, it was my look. Got me into all of this. So it's really fun. That was going to

Michael Leopold:

be my next question was, how you got into the Tourette research space? So yeah, let's do

Christine Conelea:

the journey. When I wanted to go to grad school, I did psychology and undergrad, I knew I wanted to do behavioral treatments, and I liked kids and teenagers, that was sort of all I knew. And then through some some lovely connections, I I heard about Doug Woods lab, I applied, and I got in, which was very nice. And at the time, Doug was working with colleagues at a couple at a few other sites to do this multi site randomized trial of what we now call c bit. And so it was the first like large. Large scale trial to really look at how effective is, is c bit in in improving ticks and other related symptoms that people with threats experience, and so I My job was to I had this, like, office in a dark basement that flooded, like

Michael Leopold:

every other week. It's a classic, like, early career, you're starting low guy on the totem pole, walk your way up, kind of story exactly,

Christine Conelea:

exactly like crawling out to see the sun once in a while. And so, you know, my my job was to be that first point of contact for, you know, participants and families that were interested and kind of helping people go through the process of the study, and in that, I just really felt so connected to the Tourette community and to sort of seeing firsthand how you know complex and challenging experiences can be, how you know insufficient our treatments were at The time it was, like, mostly, like, held all and, yeah, like, like, like, not great. And I also really, also fell in love with just the scientific community in the tret space is really awesome. Like, very, you know, people are very wise and and generous and inclusive and and come from lots of different disciplines, like neuroscience, psychology, social work, like nursing. And so I, I got really interested in that and and then I just stuck with it. I expanded a little bit to learn more about OCD, since it's so commonly co occurring with Tourette's, and did my my postdoc and a little bit of faculty at Brown University, working with the folks doing the the pots trials, which were these studies of therapy and medication for OCD. And then I had to sort of figure out how to sustain myself as a researcher. Like, Okay, I gotta get a grant if

Michael Leopold:

I want to. Find a home.

Christine Conelea:

Yeah. And so I was, I was still at Brown, and I was, you know, talking to a mentor of mine, and was like, I really, I would like to really get back to focusing on Tourette's. And I know that nowadays you got to do stuff about the brain to get funded. And so he was like, Okay, how about I know someone who does this thing called transcranial magnetic stimulation or TMS, like, let me walk you down the hall. And I met my mentor, Ben Greenberg, and he was basically like voluntold to mentor me, and I was fortunate to get a career development award from the NIMH to learn how to integrate neuroscience methods into the behavioral research I was doing in Tourette's. And that's really like the story of where I'm at right now. Fortunately, so the the two big projects related to this are, one is looking just at when people get see bit, what? What is it about their brain, their symptoms, their environment, that predicts who benefits? When people get better from see bit, what changed like? What? Specifically, what changes in the brain? When, when ticks change, and then can we learn better how to teach therapists to do see bit in the most effective way by looking at how it works? So it's kind of this really, like, mechanistic study of, like, Okay, we know how it what the package is, but can we pull it apart and figure out how it works?

Michael Leopold:

Yeah, and it's super important, because I think I've read about 50% of people benefit, and the other 50% do not from from CBIT. So I think there's a really just untapped area of research here is, why do some people benefit and others don't? And like you said, What would predict that? And then, how can we reshape the way we conduct CBIT so that more people can get that that kind of outcome? Definitely want to chat more about this, and also about TMS. They're both really great, you know, areas for especially the TMS pace piece. I think a lot of people may not have heard of or be aware that that's something, you know, that we're researching. But while we're on on C bet, do you have any inclinations now, the preliminary data you have on on what kinds of profile would would would be a great candidate for CBIT, and who maybe wouldn't benefit from C

Christine Conelea:

bet, you know, I think if you talk to a lot of folks who do this clinically, a lot of us have a similar anecdotal sense, yeah, but we don't have the data yet. We're still part way through that trial. So, I mean, a big, you know, there are, there are lots of questions we have. And, you know, some of it have to do with, like, is there, sort of, like, CBIT is really focused on improving tick control ability. It's a pretty narrow treatment, right? And so we, we know from other research we've done that, like, not everybody can control their ticks. And so is, you know, we have this sense that, me. Be there. It's like enhancing something that, for some people, isn't quite there. And so it's, it's like, you're not going to benefit if, if you don't have something to build from, like a foundation. So maybe we need a different approach. So I'd say that's probably one we're really interested in. And we're really interested related to this in kind of these, these systems in the brain that are involved in inhibition. So, you know, a lot of what we see in when you look at the literature of like, Why do some adults experience a decrease in their ticks, as you know, why do people experience that as they're aging, like, like, a change in their tics. And what that data mostly suggests is that it has to do with the prefrontal cortex maturing, and what that that's like your brain's inhibition, you know, center and so what it's doing is it's not that the motor system, like that's outputting the tics, is changing. It's just that the brain is getting better at putting a break on. Oh, and so, my thought, my hypothesis, is that CBIT is, is promoting that is, like, we're strengthening the break, the break, practicing the break, right. And we're strengthening these, these brain circuits that then can, like, tell the motor system, like, that's okay. Like, we can, we can pause. So, you know, a lot of folks will say younger kids, kids, or people with ADHD, particularly like hyperactive and more motor impulse control challenges, they tend to not do as well in CBIT. And again, I think it comes back to this, like your inhibition system probably needs to be at like, a certain place for it to be the right treatment for you. So this is, I'm answering this course, like this is still my we have some signals in the data that, like from another study, that, yes, it seems like there's this relationship, and that's what we're working out well, then

Michael Leopold:

it also suggests that the same person might who doesn't benefit from C but as a kid, if their tics last beyond their 20s, they they might benefit. As an adult, as their brain is has developed. So that same patient, you know, could go from not getting much result to, you know, they try it again 15 years later, and now they're getting better, better benefits with it. Yeah, important

Christine Conelea:

point. Because another, you know, a question that we got, I got from the community, was like, how do we know when the right time is to try it? Because it's really awful to do a treatment and not get better.

Michael Leopold:

It's so hard though too. Like, if it takes months and a lot of self discipline and practice and patience, and I have to be honest, like, I gave up. I was trying it the summer after eighth grade, and my therapist, I was working with, God love him. He had never done see but before, I was from rural Indiana, he went out and bought the book from TAA on how to use sea bed for ticks and for Tourette, and tried to teach himself. So he was, we were already, it was already going to be an uphill battle after, you know, I don't know how many sessions I had, maybe a month and a half or two months or so, and I was like, You know what? I had so many other things going on in life, and I it was a stressful summer, and I just couldn't devote the time or attention to it that it took. And so I say I kind of gave up on it, but I've always been curious about trying it again, especially for some of my just, like, particular self injuring tics or things that I'm like, Oh, that's a tick I really would like to work on. But anyway, yeah, I've always wondered about that, like, Why was my experience not different? Why wasn't, why wasn't I one of the lucky ones that got that, that benefit? I think there's a lot of reasons it could have been but, but I think it's something you know, to talk about. Why do people benefit? Why don't others? And how can we, you know, how can we get the best results with that?

Christine Conelea:

Yeah, and I love your point too, about, like, maybe it's better for certain kinds of ticks. Like, I also, I have been really reflecting lately on how CBIT was developed in the pre neuro diversity movement era, where where it was more, you know, I think the autism community has really led this nicely and sort of starting to question, like, what is the target of a treatment for?

Michael Leopold:

Like, why do we pathologize these things, right? Like, we

Christine Conelea:

know this is a neurodevelopmental condition. We know it's not that. See, that's not a cure. And sort of, are we treating ticks because they're, you know, bothering people, or because it's bothering the person who has them. And, like, what is c bit right for? And what is the message of c bit, you know, like, and I we think about this a lot in our clinic, of, like, wanting to be really careful about we're going to target the ticks that bother you as the person who's coming to us for help, not the ones that bother your teacher. Or, you know, like, yeah, like, or, like, some people are like, I don't care. They don't bother me. They're so minor, you know. And so I also think there's this question of, like, for what symptoms is c bit helpful for, right? And, you know, yeah, if you're experiencing painful. Tics, self injurious tics, tics that are really impacting your ability to function, that feel very distressing. I think it's worth giving it a good shot. I don't think we have to use it for all the tics a person has. I think some people burn out from CBI because of that. And you know, something we're starting to look at a lot in my lab too, is like, actually, when people come to see bit, what is it that their goals are? Yeah, and is that what CBIT was built for? And in a lot of cases, it's not entirely. I had a patient recently who's like, you know, I know I have tics. It doesn't bother me now, I just want to know what to

Michael Leopold:

tell people when they ask me what it's doing. Then let's talk about disclosure. Let's talk about your Yeah, exactly. Or like, let's

Christine Conelea:

so we're, like, quality of life issues. So I'm of the camp that, like, I think CBIT can have a lot of value for particular things, but I don't think folks should be looking at it as like, this is the treatment for all the things with Tourette's. And if it doesn't work for me, like therapy or other things aren't helpful, right,

Michael Leopold:

right? Well, let's talk about that. Then too, like, so let's suppose someone's tried CBIT, maybe it's not for them, or they can't get access to it, or whatever they they want to explore other things. I know your team is working on other other treatments as well, so TMS being one of them. Would you want to walk us, our listeners, through what TMS is and kind of how it how a typical session works.

Christine Conelea:

Yeah, so, so, TMS is a medical device that is already in regular clinical use for adults who have depression that hasn't responded to first line treatments like medication, and also for adults with OCD. And recently that's been, it's been cleared for adolescents with depression as well, and for smoking cessation. So it's, it's a device that's, that's been in clinical practice, and it's, it's basically a hand sized magnet that we can hold just against the head. So it's, it's non invasive. You don't have to be sedated, or we don't poke at all. I'm a psychologist. I don't do, I don't do needles and

Michael Leopold:

stuff. No needles, no blood.

Christine Conelea:

Stay away from this. So, yeah, it's this, this hand sized magnet. And so the, the cool thing about magnets is that they have electrical conductivity properties. So when you pass electricity through a magnet, it creates a magnetic field around the magnet. And then if there's something that has that's conductive in that field, it becomes electrified, basically. So like, if you have a really strong magnet, you put a light bulb in the field where light bulb will light up. And so our brain cells, our neurons, communicate via electricity. So it's chemical changes that happen that then create an electrical signal that travels through your brain. And so what we can do with TMS is by holding it over really specific spots in the brain. And depending on how we pulse that electricity, so we could do it like slow or we can do it really fast, we can change the electrical activity in the brain cells underneath to either turn up activity. So if there's like, a brain area we think isn't active enough, we can turn it up, or we can use it to turn down brain areas that are overactive. And so that, I think that's the first thing I like to emphasize, is it really is a tool. There isn't like, and we're still working a lot on like, what's the best way to use this tool for Tourette's

Michael Leopold:

the frequency or where we target, you know, supplementary motor area versus, yeah, others might target exactly,

Christine Conelea:

and you the area we're looking at, the supplementary motor area. And something that's been really interesting to me about TMS, particularly given I'm a psychologist and a therapist, is all of these technologies like TMS, these neuromodulation technologies. The idea is also that, like, what the brain how our brains Act, is a interaction between brain activity, like the cells in our brain, and then the the experiences we're having, so the state that we're in, like, what we're thinking, what our feelings are, what we're what our behavior is. And so there's a lot of really interesting research in the the TMS for depression space, where people started to be like, Oh, wait. Part of why some people seem to benefit and some don't is they're doing different things, like before and after their sessions. And so what if we actually use TMS to sort of help boost something in the brain and then do therapy skills that really then exercise that? And so that's what we've been doing in my lab in a study we call the CBIT. Mass trial. And so, like I was saying earlier, this idea, right, that maybe your brain needs to have a certain amount of inhibition for CBIT to feel like it it clicks, right? So we're using the TMS to turn down this overactive motor area, so kind of give the brain a better chance to be able to inhibit and then the participants are then immediately walking into a CBIT session and practicing those skills with inhibition skills. Yeah, exactly, yeah, yeah. So really thinking about kind of like, can we boost the behavioral practice by by helping nudge the brain in the direction that's helpful.

Michael Leopold:

You've mentioned fMRI scans when we do things like CBID and TMS. Can you talk about how we're, we're actually changing our brain?

Christine Conelea:

That's part of the questions we're asking in my lab. So we're, you know, there has been no study that has really looked well at what happens in the brain, really, we're not have any study on that yet. There's like, one study and seven people like, oh my gosh, that was the original one. And so that's that's a big part of what we're asking now we have the results of the first phase of this CBIT TMS study, where we did look at changes in the brain and and part of what we're seeing is that we do see this change in the connection between the motor area on the surface of the brain and the motor area deep in the brain and the basal ganglia that seems to become reduced as people go through Cbe and through TMS. And so the idea is we're probably turning down this overactive motor process

Michael Leopold:

makes sense, which makes sense the goal or part of the Yeah, yeah, exactly.

Christine Conelea:

But we were really curious to, like I said, about this inhibition circuit as well, and kind of trying to understand better, like, how do these two work together? Yeah. So we have a lot of data we have to look at.

Michael Leopold:

And then even more, to get further, there's even implications around, like, Can I change my brain with things like conscious breathing or redirecting my attention? And some of the other coping tactics I may use? You know, lately I've been focusing a lot on, just throughout the day, trying to take, like, do kind of the breathing in thirds, and like, really focusing on my breathing more so as a grounding and kind of grounding exercise and to relax. But it does also help my tics. And, you know, I wonder if you get in the habit of that, you know, you I know people who practice that kind of breathing regularly, that that way of breathing sort of becomes the norm for them over time. It's less of an intentional, oh, I need to slow down and breathe. You're kind of always, often times in that sort of state, yeah, I wonder if you're doing longer term benefit to your brain when you, when you practice those things. I

Christine Conelea:

think you bring up this important question, this sort of idea that, like, there are multiple ways that you can create similar changes in your brain, right? I can change the motor area of my brain by learning piano, by learning tennis, by, you know, all so, so part of why I am really interested in this question of what happens during c bit is not, I mean, I care about CBIT, but part of me is more like if we understand what is changing when people experience a difference in their symptoms, then we can start to hone in on, like, what are all the ways we can access that that, yeah, exactly. I can access what it is. And I from working with lots and lots of patients, like, I think it's different for different people. Like, for some people, it might be TMS, really is the way. For some people who receive it, for some people might be breathing. For some people, it might be, you know, whatever it's more like, because we don't know the why in Tourette's of like, why are symptoms getting better when they do in people? Once we know that, I think it's going to unlock a lot of potential ways to get there.

Michael Leopold:

I think so too. And then, yeah, then we bring that to the patients in terms of treatment options and what can be, you know, what all they have at their disposal to use and see what works for them, and hopefully less of a kind of like shot in the dark approach or trial and error. I hope we can get to a place where it's a little more kind of systematic and formulaic, and how we determine, all right, maybe try this, or you seem like this kind of profile, maybe see bit would be, would be a benefit to you, or TMS or something else, great work that you're doing and your team. So I'm excited to see the paper when it comes out on this and the other areas we discussed. I know you're also doing research around OCD and anxiety. Any cool studies there that are in the works you want to share? Yeah, we

Christine Conelea:

have a so similar to the CBIT TMS study. We have another study in OCD. You call it the next study? It's with my good colleague, Kristen menito at Brown, and we are. Kind of a similar principle to what I was talking about before, about like, Can TMS help boost how well therapy works? We are testing a combination of TMS and exposure and response prevention for OCD. Oh, so the idea there is that we know from a lot of research we've done that one of the big reasons that people don't benefit from ERP, and for those of you don't know, it's in a nutshell, ERP is like gradually doing the things that are scary that OCD doesn't want you to do, so you expose yourself to those situations while doing response prevention, which is inhibition of of compulsion. So you kind of, it's like you get, you get in the situation, and you stay in it until you naturally feel better. It's this idea of habituation that we all are wired to do. So one big reason that people don't benefit from ERP is they can't inhibit their compulsions, right? So getting back to this common theme of inhibition, right? And inhibition is hard, especially when we're really anxious. The more anxious we are, the worst the brake system in our brain works, yeah, like, yeah. We're all less regulated when we're anxious and stressed, and so we're we're using the TMS to we're actually trying two different spots on the brain to see, you know, can we kind of turn up an area that helps with inhibition, or and can we turn down an area that's like more of the motor activation and then, so similarly, people are getting TMS and then going right into their exposure session. So we're, I don't have any results for that yet to share. We're still recruiting and collecting data, but it will be able to look at how it impacted exposure therapy, how it changed the brain, if it did. So, you know, another, another exciting way to kind of help the all these co occurring

Michael Leopold:

systems, well, yeah, and a lot of the same population overlap, you know, with Tourette and OCD. Now, can patients participate virtually in the OCD trials you have? Or is that you need to be in Minneapolis for

Christine Conelea:

Yeah, so for both of our TMS studies, and those are for 12 to 21 year olds, right now, those are both, you have to be able to be in Minneapolis for about three weeks, because it's hard for us to take pictures of your brain and do TMS, if we're not Well, those

Michael Leopold:

are TMS. Is like, daily, right? You get it done daily for like, 15 minutes, or

Christine Conelea:

whatever it is. Yeah, we do it every day for 10 days in a row, 10 business days. And so I kind of think of it as like a, like a boot camp version of CBIT. It's like we're kind of helping create a lot of what we call neuroplasticity in the brain all at once, like giving it a big boost. So the the that c bit TMS study is only in Minneapolis, the one with the OCD study is also in Providence, Rhode Island. And then the one that is just see bit is also in San Diego. So, oh, okay, depending on, you know, if folks are interested in and we're also really happy to just help point people in the right direction. If they're just like, I just need a direction. No, I

Michael Leopold:

bet it's sometimes easier just Yeah, call, and you guys are also a great referral source. Well, I mean, I first met you at the TAA conference a few years ago in Minneapolis, and saw, Oh, you're doing video, some kind of video study. They want to record my tics. Sure I'm, I'm at a trip Research Conference. I guess I'll participate in Trent research. Seems, seems like the thing to do here. And so that I got acquainted. So I think my point is that, you know, if you're going to any of these events, you may run into people doing this kind of research. You can get involved that way. If you go to tick con, or, you know, any kind of National Conference on this, you may find yourself in a place where you can get started with some of this, at least the video one where, you know, we just need a few minutes of your time.

Christine Conelea:

Thank you for sharing that like I want to highlight how impactful, like, your decision to participate actually is, because we had no data showing we could do this. And by having literally, like, I think it was like, 15 or 20 people at titcon participate, we were able to go back to people at the NIH and say, like, we think we can now do this in 1000 people. And they were like, Okay, right? And we would have never been able to do that without, you know, our participants being willing to, like, help give us that, that initial boost. So, wow,

Michael Leopold:

that's such a powerful story. I'm I'm glad it had that, like, I'm thrilled to hear that, yeah, I mean, you went to a great place to find people with Tourette, and I'm sure I gave some very high quality data, because I was like, I mean, we're all primed. We're at the truck conference. All of our ticks are, like, going a mile a minute. So I know you got some Michael's pure tick, you know, frenzy on the video there. But I was feeling very, you know, very ticky that day. But anyway, it's. No definitely, no doubt, for all of our listeners to get involved, it's also a great way to build your community, and not just to take part in research, but to meet other people with this condition and other co occurring conditions. So when you think about people diagnosed with Tourette, especially younger people like children, and I imagine you see a lot coming into the clinic around this, is there a piece of advice you find yourself giving most frequently? And of course, I know it's idiosyncratic, and every case is unique and specific, but any kind of general piece of advice you would give to either the parent or to that young person that was just diagnosed?

Christine Conelea:

That's a great question. And I'm a clinician scientist at heart, so I'll tell you what, what I like to say based on our data. Also, I really like to focus on helping folks understand that we we know a lot about what's happening in the brain when you have Tourette's, and we understand and that a lot of the brain systems that are driving ticks are the same ones that are driving the ADHD, the OCD, it's really one thing, and that having tics doesn't mean anything bad is gonna happen in your life, like you could still be a perfectly happy, healthy, successful person. And sort of thinking about your relationship with your tics is really important, and how to live your life with your ticks and not have your ticks live your life for you. But I really do think this like this education and sort of just demystifying for people that like know that you have a thing, and we actually really know what it is, and what we've found, we've actually looked at some of this data is coming out soon, in our CBIT studies, how distressed patients are. We ask them every session you know, how much distress they're having about their tics. And the biggest change we see is after the first session, and then it basically flatlines. And what is that session? It's just education about ticks, the opportunity to normalize it to, like, understand that, you know, you're not a quote, unquote weird kid, like you have something that we get.

Michael Leopold:

Yeah, it's like, you found a place that understands you, and you can talk to them about it, and it's safe. And, yeah,

Christine Conelea:

exactly. I'm like, That's it. It's like, it's just the education and demystifying it and the relief that you know this is we got it like we got this. We know what we're doing we

Michael Leopold:

do. And I think by you know, addressing it, where it does cause challenges in our lives, can enable us to really make the most of the superpowers that it brings to So, yeah, have you found anything in your research around that, like the brisk reflexes, musical abilities, any, any kind of, you know, what, what are our superpowers in our community, compared to just like general population? Yeah,

Christine Conelea:

I think there are definitely so many recurring talents that we see, like a lot of great athletes, musicians, and, you know, we know so part of what's happening in in Tourette's and in OCD, kind of these disorders where there's a lot of repetitive behavior, there's this brain, this system in our brain that is responsible for us learning a new like motor sequence, and then what we call habitizing it. So they're kind of these two different systems. One is sort of like, okay, I'm learning the new thing. And then once it's like, okay, I got it, I'm moving it to habit. So think about like learning how to ride a bike, or like playing a new instrument. Initially. It's very like high conscious effort, because you have to really think, Okay, where do my hands go? How do they go? And with repetition, you don't even think about it anymore. That's your habit system. And so one of the superpowers is that habit system is really, really strong in people who have Tourette's. And so people with Tourette's are usually better at learning something that involves motor actions more quickly, habitizing it more quickly, and then making these subtle adjustments. So like, things, I get, like, any kind of, like physical, like learning a new instrument. I'm learning choreography

Michael Leopold:

and skills, okay, yeah,

Christine Conelea:

kind of that, like, I think for people without tread centrally, it just it takes more times of practice, whereas people and then you're like, I got it, and I think that's really cool.

Michael Leopold:

I always found with sight reading and music, there was like something I can't I have no data or anything on this, but I just felt subjectively that I could just give me a piece of sheet music that I've never seen, never played before, and asked me to start at the first measure and start playing. And I found it. I was a percussionist as a kid, and I thought I could make, I could make it to the end with with very minimal errors. And it was like something about just seeing I could read the music and just just play it for the first time without practicing or thinking about it. And I don't know, it feel very traumatic. It was like something about my brisk reflexes, or something in there, my brain, I saw the note and I just knew to hit the drum. And in that way, it just kind of. I don't know, it was very natural for me. That was how I personally felt. Like there was something I can't explain why, just I can, I can guarantee that it had something to do with my Tourette's, like, that was a good drummer. I'm,

Christine Conelea:

like, so excited about your example, because I started taking drug lessons. I've, like, always wanted to, and then I turned to 40, and I was like, I am gonna do it. Like, I'm just gonna learn now's the time absolutely and so I've been learning the drums. And let me tell you, that is not my experience as someone who does not have Tourette's the amount of time and energy I spend trying to be like, thinking about like, Okay, what is this limb doing? And what is this? How do I do this? And how to do that? It's so effortful, and so it's really cool to hear your story of like, oh, no, that was, and I think that's a great example of the superpower

Michael Leopold:

for me. It was, you know, yeah, I would say drumming was probably where I noticed it the most. Of that really, just like feeling like it was helping me and empowering me in a way, you know, to your situation. I think I noticed a difference between like, drum set versus snare drum. I think snare drum can be good for just kind of getting beats and rhythms and stuff without the like syncopation of like your your leg doing one thing, your hands doing something else. Maybe, you know, I actually preferred snare drum. I don't know, but that was always my preference, but, but anyway, though I know a lot of percussionists with with ticks and Tourette, and I don't think that's just a coincidence, I think there is something there that many of us find just kind of an affinity to it. Something feels very natural about the syncopation, about the the way it uses our senses, our fine motor skills, you know, the reflexes we have could be a lot of things. But, you know, I always encourage young people to find some kind of if you're looking for an activity like rhythmic sports are great. I know, like swimming, running, things like that, have been recommended to people with Tourette. You know, give it a try, doesn't it doesn't dictate your life. You don't have to do this. But I think, as a young person, if you can find something that you're naturally good at that works wonders for confidence and just everything down the road. So definitely something to give a try. Yeah, exactly. Well, Dr conoley, it's been great having you on the uptick and everyone again, this was wonderful. And to our listeners, we'll put some notes in the description for this episode so you can check back and find her lab and research and some of the other things that we discussed. Hope you all have a wonderful rest of your day. 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. You

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