Deep Brain Stimulation (DBS) Surgery with Callum deQuevedo

In this episode, I have an illuminating discussion with Callum deQuevedo about his life-changing experience undergoing deep brain stimulation (DBS) surgery to treat his severe Tourette Syndrome (TS). Callum shares the incredible story of his journey to DBS, from exhausting medications and therapy options, to making the decision for surgery, going through the procedure and recovery, to the transformative impact it has had on reducing his tics and self-injurious behaviors. While not a cure, DBS has given Callum a new lease on life. This powerful testimony sheds light on an emerging treatment option that could help others find relief.

Episode Highlights:
[01:27] Callum emphasizes DBS is not a cure but has significantly reduced his tics.
[02:37] Callum details the lengthy DBS candidacy process.
[05:30] Mental health criteria for getting DBS.
[07:06] The process of DBS surgery.
[09:27] Remote monitoring of Callum's DBS device.
[10:58] Follow-up surgeries required.
[12:38] DBS reduced Callum’s motor tics by 70%.
[14:15] How DBS has lessened the burden of TS.
[15:30] DBS has saved money caused from severe tic episodes.
[16:25] How Callum enjoys going to the movies.
[18:10] Being triggered by each other’s tics.
[19:30] DBS has improved Callum's hand tremors and handwriting.
[20:23] Mental health benefits of DBS.
[21:33] Limitations after DBS, including high-contact sports and metal detectors.
[23:54] Callum’s future college and career plans.
[25:04] Impressed by Callum's deep knowledge of tic blockers.
[28:54] Finding a TS therapist.
[30:00] Callum’s one piece of advice for people with TS.
[31:40] Post-DBS, Callum needs less accommodation at school now.

Links & Resources:
New Jersey Center for Tourette Syndrome and Associated Disorders (NJCTS): https://njcts.org/

Remember, your story is powerful, and sharing your experiences can be the guiding light for someone else's journey. If you enjoyed this episode, please rate, follow, and share 'The Uptick' with others. 

Transcript

Callum deQuevedo: 0:00

But the one I got for specific purposes, you can actually get like a rechargeable one and many different types. But I got like, where I have to get this replaced every three to five years. But the reason that's really good is because instead of having the recording saved from my brain, so that's the other thing. This device measures my brain activity. This is always recording my brain. And so stuff can be uploaded to a cloud with the rechargeable ones, if they don't have it yet where you can upload it to, to the cloud, it still records it, but instead of like me waiting every month, or every six months to go to the doctor, and then they take the charts out or the readings. It will be it's just sent to your location,

Michael Leopold: 0:36

they can virtually monitor your brain activity from afar. Wow. 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. All right, thanks for joining us on the podcast today. I am here with Callum Callum, how's your day going? So far? Pretty

Callum deQuevedo: 1:07

good. It's been a nice and relaxing day for the holidays. Cool, cool.

Michael Leopold: 1:10

We are here to talk about a recent treatment that you had for your Tourette Syndrome, deep brain stimulation. If you could just describe the experience of DBS in one word, what would you say? Amazing. That's awesome. Talk to me about that elaborate on it. Why? What made it so amazing.

Callum deQuevedo: 1:28

So I feel like a misconception I get a lot is that people go into the DBS thing, man, it's a cure. It's not but it is a treatment. And I feel like what I've got is I've lessened my tics a lot less I still have my really complex tics. But instead of there being over 100 of them a day, maybe like 10 a day. The reason I got DBS was actually because of like myself punching or like had been in text. So that was actually the reasons I don't mind the complex texts, they can just get a little annoying. But besides that, yeah, I just feel a lot better. I'm not as like, achy all the time, like my fist doesn't hurt or my head, I don't have as many headaches because in my head in my head. So it's given me pretty much that part of my life back where I don't feel the best. Like I feel a lot better. I wasn't feeling the best. I had headaches, I was very achy. And that many people could relate to that. And it just gave me so much more control over my tics too. I mean, I don't I don't know how to just describe the feeling. It's just amazing because I can still have pretty monitors or just from my tics sometimes. But it really just works well I'm able to block them out without having any problems and the skills that I work, learn through like through CBT, which is the intervention therapy. I've used those tools and I put those together and it's really helped with my tics.

Michael Leopold: 2:34

That's incredible. I'm so glad to hear that. I'd love to talk a little bit about what DBS is for anyone that isn't aware, my understanding of it is DBS is a brain surgery that can be done for certain people with Tourette Syndrome, that it was done in the past a lot with Parkinson's patients. And now it's been used for Tourette that it is used with people who have exhausted all the other treatment options and also have a case of CI S that is really complex and impacts major life functions. You know, like you mentioned the the self injuring tics that can make you a candidate for that. I'm wondering if you can walk me through what the lead up to getting? DBS was like maybe like did were there different try a bunch of medicines do they have you tried a bunch of therapies like talk to me about what made you a candidate for it? Okay,

Callum deQuevedo: 3:17

so Yes, sir. It was like quite a lengthy process. Luckily, I got it done within about four to six months. So I was really happy about that. But I can take some people years. So I wouldn't send them outside I neuromodulation department and that's my team. So it was when you go for the surgery, you'll most likely have a team. So everybody in this department, all the doctors from the psychologists, psychiatrists to the neurologist who didn't does my programming, they all work in the same department. And they all specialize from the same thing like OCD, Tourette's, as well as like Parkinson's and other movement disorders. So it's nice that you have a team and they communicate with each other, especially at the same hospital. So you usually have to go to a lot of doctor's appointments, you have to go see the psychologists, the psychiatrists, and then a neuro psychiatrist and I was like your cognitive testing. So it'd be like, read something back to me backwards. Or you know, you probably had it done in school if at some point so it was that kind of testing. And of course, I went and saw my neurologist so many times doctor she had, she was really wonderful. I still see her about every month because it's tough to get my device program. It was nice to have it in one place. I'm happy I didn't have to, you know, every time I went in for a visit all like it's on the same floor the same building on the same department. There's only one doctor I had to go to another department but it's the same hospital so it was long experience and to be honest, if you can get through it, it's really worth it. I would honestly say a lot of the pain comes from would have to come from the medicine so you do have to try blue from every major category. I already tried many medications I'm not gonna say as many as like other people because I know people have tried to like 36 I tried like 12 and actually saw on a tick medication to help but I also have really bad sleep problems with that but besides like the other things I had to try a Topamax I think that's what it is. I tried Topamax last spring around this time of year I had to try I'm already so I've tried a couple of medications, all those heavy hitter ones out He's found either had those side effects just were so much worse than a tick. So they do want to try at least like everything, because it really is supposed to be like the last resort. So yeah, so you will have to try medications, you have to go to a lot of doctor's appointments. And there's other things that you just have to follow, you have to qualify for. When you get to surgery, one of the things I thought, you know, it's kind of a struggle was there's actually this mental health aspect. So you couldn't, you couldn't have like any like of the top Fox, I'm pretty sure most people with Tourette's have had before. I would say before the surgery, I got into a really positive mindset, I was really good for six months. And it was kind of tiring to be that happy all the time. But I always calm down, I'd like I didn't let my thoughts or my obsessions like, get over me, because that could inhibit me from getting the surgery. One of the things is you couldn't have had a thought or thought about something, and then had the surgery within six months. Really,

Michael Leopold: 5:51

I did not know that. So they really want you to have a positive mental attitude going into this and leading up to it. Do we just we have better outcomes with that? Or is there Do they give you a reason for why that's the way we handle it.

Callum deQuevedo: 6:02

I never really understood why that specifically, like the testing, I know, it's like, it's really just that sort of like Parkinson's when you do like the neuro psych testing. So it's just to make sure you don't have any cognitive deficits. But if you do have a cognitive deficit, even if you have Parkinson's, and you have one or Tourette's doesn't matter, this or whatever you want the surgery you don't qualify for if you have any cognitive deficits. So that's something I thought was pretty interesting. And I actually get why without that. But another thing about having this in during the program, and since I'm in the early stages, they want you to keep that as you go on, because they don't want you're really it's really interesting on how they described it a lot more research on it, but your mental health and how like you handle stressful situations, we know almost stress has like multiple different side effects on our body like hair loss and like, just like upset stomach or headache, just like the fact. So my brain and my body is learning to work with the device. So the early stages, you want to keep it like, keep everything normal, you don't want to like cause any too much stress or anything. They really that being positive and not letting things get too easily. It's you just don't want to be stressed during the early stages.

Michael Leopold: 7:06

That makes sense. So let's talk a little bit about the surgery itself. And the the day of the operation. They actually put a physical device, what is it inside your head and your brain? Like talk to me about that.

Callum deQuevedo: 7:19

So yeah, so it's a pacemaker, I can't keep my mind right left. And as you can see it, but there's a big block in my chest. And I have a scar like right here. So there's my scar. So that's where they put that. And that was actually the easiest part of the surgery. So what they did is mine was actually the first one at Mount Sinai. And they use it was an MRI guided one. So usually, if I got it the traditional way, I might have had to been woken up during the procedure, which would have been a little scary, but I'm happy that I was able to have it then the MRI way, it's like a special MRI, there's this guy from the company that owns the MRI there just to make sure nothing went wrong. So yeah, they were taking multiple pictures. And the doctor the surgeon actually got who's amazing. He actually usually uses his MRI, that's like his main tool, and he thinks it's like the future. So it made it a lot easier. They have they put like a helmet on your head. And it's like a contraption, it sticks out in the back and you drill into the head and you like it's like a little feeder, like you put the wire through the feeder and then they thread it through, they take a couple pictures and then they were like Ha we have to go this way. So when they move it, it will just be about a millimeter to say move it a millimeter at a time to make sure it's going in the right place and onto the wrong spot. So they put it actually in mine and my phallus so that part of the brain supposed to be one of the main areas to help with the ticks. So runs up the side of my neck goes behind my ear, and can't really feel it up here. But I have a couple of scars because they had to drill like four holes in here. And then I also have a programming device and should have brought out with me but it's a pretty much like a Atanas like an old Samsung phone. I have like a clicker, it looks like just a power button for a TV. But like the old one where it was it was really just switched the channel turn on the TV. So it really has that one function or like if you had like, I don't know, if you know, I'm talking about like an air conditioner. And you get the little like simple, really simple controls the things that you have that the white thing and the white thing that's the clicker that connects to the device of my chest. So the device in my chest, you can't there's a couple of different versions of them. But the one I got for specific purposes, you can actually get like a rechargeable one and many different types. But I got like, where I have to get this replaced every three to five years. But the reason that's really good is because instead of having the recording saved from my brand, so that's the other thing. This device measures my brain activity. This is always recording my brain. And so stuff can be uploaded to a cloud with the rechargeable ones if they don't have it yet where you can upload it to to the cloud. It still records it but instead of like me waiting every month or every six months to go to the doctor and then they take the charts out or the readings. It will be it's just sent to your location

Michael Leopold: 9:48

they can virtually monitor your brain activity from afar. Wow. No Do you get any readings? Are you able to make any adjustments yourself using this device like if you're having A day where you're very stressed and you're getting a lot of those pre monetary urges or you feel your tics are worse. Are you able to, like control it somehow through the device? Or is that not how it works? It doesn't report

Callum deQuevedo: 10:09

all the time. But it's like every, like day, I record it for like 10 minutes and the brain stops. But besides, besides that, it's, I can change, it's pretty much the electricity is still shocking. So it's recording and it sends electricity to the thalamus, I can change it. But I've talked to my neurologist and she's like, please don't mess with it or anything. And I met another person with the DBS before I got it. And they were local, I have like four different settings. But he already had it for five years, like six years, he had already gone to the doctor's over like 20 times and gotten the programmings. Unless like, I'm like, I'm having a really bad day, which I haven't had in a long time. And my mom, like messaged the doctor through the portal, or text them. And she could say, put it up by this many voltages. I don't touch it. But yes, I can't adjust. And she usually adjusted when I go in.

Michael Leopold: 10:57

Now, when it comes time to get a new device and a few years do they have to is that another surgery? Or what does that part look like the follow up when you need that

Callum deQuevedo: 11:06

the wires are just like permanently, that they're not coming out. I don't know what they're made out of like Vibranium or something, but they're just meant to last forever. And this will be taken out. So we'll just cut that open, take it out, connect the wires to a new one. And then I go on my way. So instead of being a brain surgery, I only just had to have the brain surgery at once. So instead of having to spend like two days in the hospital when I'm done, it's really it's a one day surgery. So I go in and I'll be able to leave like right after because it's my new surgery.

Michael Leopold: 11:30

When you got the first surgery, then you said you were asleep for that, right? Yeah, that's just an MRI got it. Interesting. I didn't know that. That's something they could do with you being asleep. So the thing actually

Callum deQuevedo: 11:39

about my surgery is usually they do the surgeries on separate days, but my neurosurgeon was kind of like, Nah, we're just gonna get it done one, which is like I don't know how many other people had just had both surgeries done in the same day. So usually, like you get the brain and then like go rest for a couple weeks, and then they plug the battery in. But he just did all of that at once. So I didn't have to go back two separate times, which I really enjoyed. So I mean, that recovery process a lot shorter than Did you

Michael Leopold: 12:03

get a feel for how many other people with Tourette have had DBS? It's definitely

Callum deQuevedo: 12:09

not even a super common thing in the TS community. But yeah, there's a few people like the one guy from around where I live, he's like 28. Now that's the person I met with DBS. But as far as I know, he's the only other person for Tourette's to have DBS in the area. It can be pretty rare. But if you usually go to a big like TAA, like meeting or something like that, or like Washington or tech con, usually do see a couple other people be like, oh, yeah, I have DBS. Just because there's so many people, there's usually about four or five. Wow.

Michael Leopold: 12:37

So I want to talk about the fun part now, which is the results what you've seen how your life has been since then, you had mentioned that this is not a cure for Tourette that you do still have your texts. I want our listeners to know I mean, I have known you for a couple years now. And I first met you with a Tim Howard Leadership Academy at the New Jersey Center for Tourette syndrome. And I gotta say, I am noticing a night and day difference just in your presentation of your Tourette hear, I mean, you are going from being interrupted in your own mid sentence by your texts. And now just here and there, you've got some text and I and I don't want to minimize the the very real stress that your truck may still be causing you. But I just want to say I have seen a very noticeable improvement. Now, would you say that you've seen an improvement in both motor and vocal tics? Yeah,

Callum deQuevedo: 13:21

I was just say overall, I would say it's like 70% of my daily motor tics. And to be honest, besides my punching and my head banging, I don't really have that many motor tics besides like a neck twitch or like clicking my or tracking my fingers. And they were always very simple. I never had like a jumping tick or anything like that really decreased. Especially like I said, the self injurious tics or the self harm tics, they just decreased so much. It's been like four days last time since I punched myself and when I punish myself. It's not as hard as it used to be, I'm able to control it more. So it's kind of just like a little like that, and it doesn't hurt. And it really is just amazing. The vocal tics, I still have a lot of complex vocal tics, I still do have my coprolalia but again, that was my main worry. The main worry was is self interest. I can live with my coprolalia and my palate echolalia all that stuff.

Michael Leopold: 14:06

Wow. Okay. When you think about your life before you got DBS and how it compares to your life now, I would love to hear about how things are different how you are, you know, maybe there's things now that you could do that you couldn't do before, or how it's changed in terms of like, all the different places you can go the things you can do, the less of a burden that Tourette now is in your life.

Callum deQuevedo: 14:29

So yeah, it has really allowed me so like I said before the process of getting back into normal things because I've also been out of school for a while is online and now like a teachers coming to my house and given me the work and instruction just to not have that stress of being in the classroom. But besides that I can go to work I don't when I go to work, I don't have customers staring at me the whole time. It doesn't interfere with my work like two weeks ago I went and it was the most takes I had at work since the surgery. And it was just like this. I can't like my shoulder It just kept rolling and I my eyes kept blinking. So I was just like, hey, I don't really feel comfortable and my boss is like, Oh, you don't have to stand at the front of shortage go to the back. But it really has helped with work being with friends. It really has improved my it really improved my sports. It really improved my like sports activity. I'm able to keep my cool a lot easier. my tics don't serve flailing out when I play soccer is a constant moving sport. So I'm not really taking that much but my favorite sport and my main sport I play that I'm like pretty decent at is tennis, tennis you have the like little breaks between serves and like rallies. Yeah, so I have that in my rallies. But when I'm ready to get in between them, and I'm like, have that 20 to 30 seconds or I'm about to serve not even 30 Like sometimes it's 15 when I'm about to serve it can that's a second for me to like, relax, I'm not constantly moving. And then my kicks come out and the more anxious I get. my tics aren't there as much as they used to like last year I went through a couple tennis rackets because I had a big intake with my tennis racquet destroyed a couple of them. So now I'm already like over halfway through the season, and not like one tennis racket, I haven't had one tick price limit or anything. So it's really helped me

Michael Leopold: 16:09

save a lot of money there. That's great. Definitely do go to the movie theater over. So

Callum deQuevedo: 16:15

that's like one of the places even before my dBs, I would always go to the movies. I actually I have a past like there's AMC Regal, we have a regal by me and my dad, I pay like the money a month and you get to see as many movies as you want. I've had that since even before I was diagnosed with Tourette's, there used to be another service called like movie pass where you pay like 10 bucks a month and got to see as many as you want. So yeah, so I have just gone for a long time, I've had to leave one or two once or twice. And because of my tics, movies have always been a safe haven for me. And the wonderful part about it is that they know me so much at the movies, I've gone to the movies probably three times in the past two weeks. Yeah. So like they know who I am, like when I walk in and know what I want like a soda and it's not popcorn, and this and that. So the workers are the workers are very understanding. And actually even the one manager who works there, he used to be my doubles teammate for tennis on my school tennis team. So he let them know and I've never been kicked out or asked to leave. Luckily, I've never been asked to leave the movie theater. And I really consider that a safe haven. And it still has made the movie watching experience a lot better. So I really appreciate that it has made that better. So I'm not constantly like worrying about like missing the movie, I'm just able to focus. If I'm very focused my I would honestly say I have more motor tics, I do vocal tics. And I prefer to just have at that point, if I'm watching a movie, I have a lot more like motor tics. And the motor tics are rarely like small like me blinking like this with my one eye. And I have like a total clicking tickets. I've had it since I was like five, it was like one of my first texts are even longer, but like my toes, like flick off each other. Like oh, it's actually an app as I'm talking about it. But that's still like my main take now just like my most common tic I have, but it makes very minimal sound unless you're in a quiet room with another person, you're sitting by the person. That's the only time you hear the clicking. But if I'm at the movies or even at like a restaurant, you're not going to hear my toes click What effect

Michael Leopold: 18:04

did Deep Brain Stimulation have on the self injurious tics?

Callum deQuevedo: 18:09

That was the biggest? In my opinion, the biggest difference? My vocal tics are pretty bad. I definitely people who do have them a lot worse than I did, or do they weren't as constant, they were a lot more complex. And when they did happen, there were just a lot of them. And I can go like 10 minutes without one. But um, I was able to

Michael Leopold: 18:30

well, we're talking about your ads. So I mean, that's to be expected. I you know, anytime we were around each other. I mean, you're seeing me tech right now, too. And I'm getting triggered by your texts, or you're picking more because you see mine and it's just the whole thing. But what were you saying though?

Callum deQuevedo: 18:46

But yeah, the self interest takes have just been so much less, especially the head being one has pretty much vanished into thin air at this point. Really just the punching just the punching myself. So yeah, so in that aspect, it really, I would say to decrease by 99.9%. Once a week, I'll punch myself. But the amount of time that takes up, it's less than 1% of your week.

Michael Leopold: 19:08

Yeah. And it sounds like you said for the most part, even the punching tip now it's a lot more mild and it's not as aggressive of a punch. So I mean, that's incredible that, that this this surgery was able to address the tics that we'd want it to most you know the ones that can actually that can do significant damage to your body. Those were the tics that we were able to target and get reduced by the substantial so that's really incredible. What was something that surprised you about GBS that maybe you didn't expect or or no going into it?

Callum deQuevedo: 19:37

So the biggest thing is I've always had pretty bad handwriting, and it still shakes a little bit like but my hands when I used to hold them out like flat like this. They used to be like this. But now when they first turn the device on like I saw the device in me and then the implants actually wait a couple of weeks after to activate it. But like when I first turned it on, if you've ever seen an interview on CBS, it was like they show it and it's like a snap, and then my hands stop going from there. And then like my other hand would be shaking, and they would turn on the one side my other hand would just be like this. That was a really nice side effect. I really Yeah, I'm a lot like less like a schizo when I'm like writing or anything like that or the like, I don't accidentally miss type stuff. I'd had like pretty much a minor like tremor or shake. And that's pretty much it like gone. Now I still have a little bit but not as bad as it was. Wow, that's

Michael Leopold: 20:20

incredible. Have you noticed any other benefits aside from Tourette's that we attribute to the DBS

Unknown: 20:26

I would definitely say you're just a lot happier. I still get like, sad and stuff. But at first when it really when you turn it on, I don't know if it's like a placebo effect. But when you like op ed are the energy you just become so much more aware. Still just feel better as a person you feel a lot more positive. Like again, I don't know if that's like our true side effect. It really the main thing was the tread. So that's like the main thing I hope I've actually still had my struggles with OCD and stuff like that anxiety. So that is still there, sadly, did not really help that. Yeah, I

Michael Leopold: 20:56

was gonna ask about that. If you've got any benefits or the comorbidities, it doesn't sound like it. I mean, it's not what it's made for. But it'd be nice if it helped those things to in some way. So yeah,

Callum deQuevedo: 21:05

I wanted to say what didn't completely happen because I was always so aware because of how much I was taking. So I would say brought my anxiety down so much to that point, at least my social anxiety, or I thought it was being judged all the time. Which is like a huge part of my anxiety. But yeah, I still have like my OCD and I honestly say like my traffic OCD, like my three can barely distinguish if it's a tick, or OCD or compulsion. Those are pretty I don't have any Chernick OCD symptoms, so that's been really nice, too. Yeah.

Michael Leopold: 21:32

Wow, that is great. Is there anything you can't do because of the device that's in you? I mean, going scuba diving or going on a roller coaster going swimming? That's all fair game, the

Callum deQuevedo: 21:42

surgeon said. Don't play American football. Like that's like out so like no box. Yeah, like don't box anyone like don't get into like MMA or like a fight dangerous for everybody like tennis, I can even go play basketball, tennis, run, play soccer. Even though that's still physical. It's not as like physical as the other sports, I can still do that stuff. Swimming. I've heard a lot of stories about like, how it's affected some people swimming, so I'm not really sure yet. But they do recommend that you have someone so whenever I go swimming, I'll have to have like a friend or just someone nearby who can like pull me out. And as far as I can tell, it doesn't like really disable you from showing it just makes it a lot harder. So you're like, Hey, I just need a hand and somebody can like come over and you're still kicking in via float. But the other thing that I was told not to do? I'm not really sure why is that I cannot arc weld. I think that's what it is. I cannot like weld or do arc welding has something to do with the advice the device and then I also cannot to go through metal detectors anymore. Like I go to like the air, the airport. Even when I was in Washington, I hadn't been card, I have a card with you that tells them and they were like, Okay, we'll just do like a one. So it's not the big magnetic effect, like the one in Washington. So I was like walking through the machine and just walk through and wow, I got to go around it. They're just it's not even that it's gonna like damage necessarily the device. You just said it can turn it off, mate, like, so that's like the big deal. Why are they? So yes, I can't go through like big metal detectors, no airport or like a government building.

Michael Leopold: 23:08

What about MRIs now? Because you do have like, I don't know, is it a metal metal that's in your body? But can you still get an MRI scan?

Callum deQuevedo: 23:15

Sure about that, actually, I don't think and I think I like that MRI was talking about like where the doctor to see my brain. I think I'd have to go to like a bigger hospitals where I live in like Scranton, there's like no big hospitals besides New York, and Philadelphia. And I'm located like right in the middle of the two. So I have to drive two hours to use special MRI machines. There's no totally no hospitals. But that's not even that big of a deal. Because I feel like with anything medical, if I have to get an MRI, I'm probably going to be doing it at a bigger hospital. And so something place local. So I have that I'm just I'm pretty sure I can I might be able to I should probably ask my doctor that though. Talk

Michael Leopold: 23:50

to me about your future plans. Are you thinking college you want to keep working? How much longer in school do you have? I've

Callum deQuevedo: 23:57

always been ranked top 10 in my class this year, my grades kind of falling to the 80s. And I was like kind of rough for me because I was at home so much. And I don't know if you know this but can be learning chemistry through a computer screen is not the best way to learn chemistry. I was getting the definitions and didn't get to any labs just Hey, is that my big thing is that my major is that I want to go into for college. I do want to go to college. Eventually, I hope to go after my senior year. I want to major in either history, political science or nurseries.

Michael Leopold: 24:24

Are you in your junior year right now? Yeah, my junior year wrapping it up in the next two months. Any thoughts about what kind of career you want? I mean, you got a few years ahead of you to be planning this out. But any thoughts on it right now.

Callum deQuevedo: 24:34

So I think that nursing is kind of self explanatory with that major. But what I want to do is take a history major or political science that I'd want to go to law school. I don't have to become a lawyer. But that login degree can help and I don't know if that's like a thing but like a disability advocate lawyer.

Michael Leopold: 24:48

Oh, absolutely. There's tons of work from nonprofits to lobbying to even within organizations being a representative and advocate for people with disabilities and other conditions. Yeah, absolutely. There's a lot you can do with that. That's really exciting to hear. Talk to me a little bit about C bet I know you mentioned that earlier on is something that you were also working with to manage the tics. I know that's one of the first line treatments now, at least as far as therapies are concerned for Ts, it sounds like you've had some success with that. So

Callum deQuevedo: 25:15

yeah, I've actually, I'm pretty much done with CBT, I still have if I need a blocker, because that's like, the whole thing is about developing national blockers without causing when you hold your tics and they don't really want you to mentally pull your tics in the breathing, it's a lot harder to block them. So when I first started receive it, I've actually seen my doctor coming up in about three years now two and a half to three years. So when I first like four months really hardcore, like, yeah, I have this tick, I have a new tick, this is my most common tick. How do I focus on that and the seabed is really, you're gonna go to as long as you want to continue the new tax. But really the CBT therapy is you're actually being trained to like, do see it yourself. So you're pretty much a professional at sea, but it's like a class you take like every week, and they're teaching you the tools that you need to build the blockers, so instead of having to go to like, if you instead of won't see, but every week, because now I go to like CBT, which is the more like OCD and anxiety. And that's what I mainly do with my therapy, my therapist, but he also specializes in CBT, I was able to focus on all of those tools. And obviously, I helped my motor tics so much when I got to see but when it comes to vocal tics, you have to really do like a lot of breathing. And that's like the main thing is so like, if I was clapping my hand, I would take my knee and I would like grab my knee like this. It's like like this lands my knee. And then you're supposed to like squeezed on your knee. And as you're competing response, yeah, it's the competing response. So that's what I have. And like, if my neck twitches, I just flex my traps, actually, they want to be like shaking. So because you're like, so intense, but you really do want to tense up your neck. And then it really stopped a lot of my motor tics. Well,

Michael Leopold: 26:48

now it sounds like as part of it was you learned how to do see, but for yourself. So if you get new tics, are you able to come up with a competing response for those.

Callum deQuevedo: 26:57

So that's another thing. And what I like about still seeing my therapist is if I need to, if I make a new tech, and I'm like, it's kind of annoying, especially if it's a motor Tech, I will go and talk to my doctor and I'll be like, Hey, I tried out this blocker, it works really well. But like, stops me from doing certain actions. Like if my hand was flailing in the air, my I came up with my own competing response, we're doing cosmetics to get worse. So I just like put my hand and underneath my like Saturday on top of my hands. But it was so common to my like right side of my hand, which is like my writing hand, which is why I also have like a scribe if I need one in school, for even my typing hands. So I would use that and it would just get in the way so instead, but it's they help you find optimal. So you're not stopping, it's really about building a faster way to physically stop the tick from happening, you can come up with great blockers that still work and that you can still use them. So the thing is, was some of the more optimal blockers. It's more about like mental stuff where you have to like keep your arm flailing you like tense up your arm up here, try to keep it like straight down at your side. So that also works. So I always usually have a couple of blockers especially like for neck like for hand flailing like that, where my hand goes up in the air, if I'm at home watching TV, I'll just sit on my hands and stop it. And it doesn't make my tics worse or anything. I do that too. I'll do that. But besides that, and like writing, or I'm in the middle of working, it just takes a lot of mental focus to flex the muscles and try to keep doing it or do the movement to stop it like grabbing something real quick for like 30 seconds to stop it. And one of the ways like is there be like a table so the table, put your hand flat out on the table, press it down, and then well that takes less time and you don't have to like worry about it. It's more efficient at stopping it. But you really have to tense up your hand when you're doing that blocker so it really stops

Michael Leopold: 28:46

you sound so knowledgeable in this I feel like you could teach a class on how to develop these blockers and with like so many examples you could give to people how were you able to find a therapist that specializes or at least was knowledgeable in CBT. For TS specifically, that

Callum deQuevedo: 28:59

was a little bit of a it's definitely a struggle especially when you live in a small town in the middle of nowhere and the near city like Philadelphia or New York is two hours or when you don't have those opportunities. Telehealth has been especially for like Tourette related things has been like a wonderful thing. I have gone to this doctor for three years I've never seen this doctor in person I've only met with him like computer. People are like oh I want to go to a local CBT therapist is really hard to find one and to be honest, the best place to look for them is TA or NJ CTS usually know so many doctors, and they'll help you find a doctor. So it's like really nice Italian. I found my doctor was through that. So that's really helped with me finding a doctor.

Michael Leopold: 29:39

That's awesome. I grew up in a small town in Indiana and I didn't know anyone this was years ago and they didn't have all the resources we had today. So I was seeing a social worker and he actually went out and bought a book on CBT for Tourette's and try to teach himself and to his credit, you know, he tried and we and we tried I ended up not going to full three months. You know it takes a lot of time and energy and commitment to do CBT right well One of the things we're doing with this podcast is to shed light on the experiences of adults with Tourette Syndrome. That's one big part of it. It's also just around bringing more awareness to Tourette's in general. What is one piece of advice that you would give to other people with Tourette Syndrome?

Callum deQuevedo: 30:16

Have your rough times, but eventually there will be a better time. You really have to go out there to find certain things reach out to specialists, even if you can't, like go to them. Ask Do you know any doctors in this area? It's really about reaching out into the community, because I've met other people with Tourette's and then they're like, oh, what's the TA? What's the NJ CTS? I know there was a Tourette chapter Edie cmic. In other words, a foundation. Especially the people watching us who have probably been in trucking. That's like a big thing that you've definitely got right is sticking into the truck community reaching out, talking to other people. That's another thing. I feel like Victor is very, like singular and anecdotal, in a sense, where if you reach out online and talk to other people, it's, you can find ways people were like, Oh, I have this tape. But this is what I did to stop it. And it really helped him. It's like a very similar tick. You can go on like any Facebook group, or online or any support group of people be, oh, yeah, my kid has that. Or I have that. How do you help with it? Your medical provider, but you have the experience, or pretty much a pro at having threats? Just don't be afraid to ask for help.

Michael Leopold: 31:19

It's great advice. And also, I mean, the truth community can be a good source for friendships. I've met a lot of incredible people through these organizations and meeting other people that are going through similar challenges, it'd be really rewarding. One other question we probably should have put in an earlier section. I'm curious about, have you found that you have less of a need for accommodations? Now that you've gone through DBS? I

Callum deQuevedo: 31:40

would say yes. Especially like in daily life where I don't need accommodations from like, a public place or anything like that. That was the whole thing with the process is if you have dBs, at least where I had it, the team is like, they really want to ease you back into life after the surgery, because it's still a big procedure. They really wait. They don't want you to walk straight back into work. You know, I started out it was baby steps, because of my anxiety was so bad, we go back into the school. So it started out the teacher came I reenroll back at my school from like a mountain lions charter. So I went back to the high school I my hometown. So the teacher brings me where I'd rather be learning in school during the work in there, so I'm not learning as much. So my junior year will look a little weaker on my transcript. But some of my health is just been so important to ease your way back into it. You don't want to backtrack yourself, you don't want to say like I have a very bad schedule, like I wake up very late, do all that stuff. So it building a schedule back, putting the time in to actually sit down and do like three to four hours of schoolwork a day. And doing that meeting with the teacher. Like I said, I still play tennis. So putting that work in is definitely a big thing. And my accommodation for school have pretty much the the same, I still have my IEP meetings I have to go to the goal is to limits how much I'm using these accommodations. So not going to even like I said walk before, I don't walk as much as I used to just be like scared out and I was just going to leave my special ed classroom, but limiting the accommodations to the point where why go back I'm not doing to my special ed classroom besides the period where of course I have the class. But instead of going for that short walk, going to get a drink and having shorter time to recover since then, because of the DBS because I have more control.

Michael Leopold: 33:15

That's huge. That's so amazing to hear. You've got a wonderful story, Callum, and I really enjoyed talking to you about it here. Thanks so much for being on the podcast. Will I get to see you at this year's Tim Howard Academy?

Callum deQuevedo: 33:26

Yes, I will actually have the shirt on right now. So Oh, wow. I

Michael Leopold: 33:29

love that I hadn't even noticed I send in my application as well to be a coach. Yeah, for anyone listening, Tim Howard Leadership Academy, great opportunity for high school students with Ts and also if you are in your 20s and 30s and want to be a coach. That's also an option too. That's about a three or four day event at Rutgers. And Callum and I have both done it really incredible chance to meet people and become young leaders with Ts. Well, thanks so much for being here and have a great rest of your day.

Callum deQuevedo: 33:55

All right. Thank you, Michael.

Michael Leopold: 33:58

Thank you for listening to the uptick, brought to you by The New Jersey Center for Tourette syndrome and Associated Disorders empowering you to stretch the boundaries to live your best life. The NJ center for Tourette syndrome and Associated Disorders NJ CTS, its directors and employees assume no responsibility for the accuracy, completeness, objectivity, or usefulness of the information presented on this podcast. We do not endorse any recommendation or opinion made by any guest nor do we advocate any treatment