Tourette Syndrome Awareness with Britney Wolf

Episode 42 January 10, 2021 00:45:32
Tourette Syndrome Awareness with Britney Wolf
Freewheelin with Carden
Tourette Syndrome Awareness with Britney Wolf
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Show Notes

Tourette Syndrome Awareness with Britney Wolf hosted by Carden Wyckoff

Transcript https://rb.gy/psoy5q

Who is Britney Wolf?

Resources

Facebook: Facebook.com/oneticatatime
YouTube: Youtube.com/britneywolf
Instagram: _britneywolf
Website: britneywolfspeaks.com

Follow Carden on Instagram @freewheelinwithcarden
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Episode Transcript

Speaker 0 00:00:04 Hey, and welcome to freewill and Mccartin podcast. I'm your host, Carter white cough, wheelchair warrior and disability advocate based in Atlanta, Georgia. On this podcast, we share stories of awesome people. Disabilities break down barriers for people with disabilities and bring awareness to the world that people with disabilities live and thrive in. And lastly, challenge Ditmas and stereotypes to build inclusion and belonging. DME at freewill and with carton on Instagram to connect with me, I'd love to hear what you have to think and share it with a friend today. I have Brittany Wolf who is a 31 year old woman living with Tourette's syndrome. She has had a mission of spreading awareness and education about the very misunderstood disorder ever since she was a child and has since found more ways to amplify her voice and her fight over the years. Although some days are harder than others. She continues to push forward with a smile on her face and stay positive. Download the app. I access life and use referral code carton. My name C a R D E N. When signing up, it allows users to rate and review places on accessibility in the built environment to break down those barriers of transparency, rate, review, subscribe, and follow this podcast. And I hope you enjoy it. All right. Let's get started. Speaker 0 00:01:25 Hey Brittany. Thanks for being here on the podcast tonight. Hope you're doing well. Speaker 1 00:01:31 Yes, I am doing real well. So excited to be here. I appreciate you having me. Speaker 0 00:01:36 You're welcome. Yes. And tonight, we're going to talk about all about your journey living with Tourette's syndrome. So I'll just give you the floor, talk about it. Yeah. Speaker 1 00:01:46 Yes. So I am 31 now, which sounds weird for me to say I just turned 31, like three days ago. Oh, happy birthday. Thank you. So I was diagnosed when I was seven, so I've been living with Tourette syndrome for the majority of my life. And I have mostly, I'm mostly Twitch. They're called ticks, but I think a lot of people will understand the Twitch term of it better, but so I mostly move. I mostly have movements. And so they're called motor ticks and a lot of people have motor and vocal tics. For the most part. I only have a lot of movements. I can move with any part of my body at any time I can move with it in a different way at any given moment. Like I can develop a new tick two minutes from now or two hours from now. I never know what my body's going to do next. Speaker 1 00:02:35 Especially when I was a child, I had much bigger ticks. They have, my ticks have increased as an adult, but the, the movements are a little smaller, which I appreciate because I used to flip my head down and back up. I used to jump up and down like all kinds of huge ticks when I was, when I was a child, but they have gotten worse as an adult because I am under obviously a lot more stress has an adult, but yeah, I don't really know or remember a life where I got to choose what my body did all the time. And it's, um, it's an interesting life. It's a roller coaster. That's for sure. Nice. Speaker 0 00:03:16 You're talking about there's two different kinds of ticks. So motor and vocal and the common thing that I see in the media and on the real life is those vocal ticks. Can you kind of talk about the, I guess that would be kind of like that stereotype or that bias that all people with Tourette's syndrome are living with it, have those vocal ticks and curse and stuff. Is, is that a common Speaker 1 00:03:45 Thing? Oh yes. Um, so it's a common thing for people to think. I don't want to sit here and say that it's not real because those people that do have it. So the swearing, the swearing part of Tourette's syndrome, it's actually called <inaudible> and forgive me, anybody out there. If I pronounced that wrong, I have struggled saying that word, but that's what it's called in 10% of people with Tourette's syndrome. So only 10% have it, but for that 10%, it's, it's not as funny or as like fun as people think it is like, you hear all the time, like, Oh, it must be so cool to just say whatever you want all the time and get away with it. When in reality, those people are getting kicked out of grocery stores there. They can't go and watch movies. They're getting kicked out of public places. And even when they tell them like, no, I have Tourette's syndrome, they're not getting believed. Speaker 1 00:04:31 And like, we should be allowed to go anywhere. We want, whether I swear, I don't swear because I hear people swearing all the time when they can help it out in public. And those people are just fine. So people want to believe they want to believe it when it's funny, but not when it's real. And that's what the biggest misconception is. And the biggest frustration is for those, with it that had the swearing disorder and those that don't have it because there have been times in my life where my Tourette's syndrome hasn't come up for maybe like somebody has known me for like a few months. And cause if I'm at work, I find ways to tick kind of discreetly or I don't take as much because I'm so concentrated on my job at hand. And I take a lot more once they get in the car or at home. So it will come up and people will be surprised and it can be a couple months. And their first question still is, so you swear all the time, I just look at it and I'm like, have you heard me swear yet? Just think about it for a minute before you say it. Speaker 0 00:05:32 Right. Uh, very surprising what, what will come out of people's mouth sometimes. And especially I think with the disability community, I mean, I get it all the time when, I mean, I'm out trying to get on the train and people come up to me and they're like, so what happened to you? That's the first thing that comes out of their mouth. I've never, never met this person. And I'm like, what? Oh my goodness. I would never say that to somebody. Right? Yeah. It's kind of, it's interesting how I think it's, it's a combo of what people have seen in, in stories and movies and all of those external factors also how they were raised. Right. Maybe they were never, never were taught how to approach people with disabilities or people that look quote, not normal, whatever normal is. Right. And so how do you generally respond to when people say to you those kinds of blanket statements that are just so Speaker 1 00:06:36 Forward? I generally, I try to like laugh it off, but with also giving them some facts to the disorder as well. Cause you know, I try not as aggravating as it can be. It's not going to get me anywhere by like screaming at the person. And I want them to understand, like, I'm just a normal person, just like you said, whatever normal is, but I'm not different. I just move a lot more. So I try to tell him like, no, actually, like I will say like, have you heard me swear? Or I'll tell him like, no, if I'm swearing, it's cause I'm really mad. So there's a different thing going on. And then I'll tell him like, no, actually only so many people have it. And those people that do have it, it's actually really hard to live with. And then I'll kind of go in and be like, no, I had physical ticks. Um, I've moved my body in a lot of different ways. And then I kind of let them mold, not mold the conversation. So like if they ask more, I'm going to tell them whatever, because I will always answer any question anybody has about it. But if they stopped the conversation there, then I'm not going to also force it on anybody either. Sure. Speaker 0 00:07:39 And when you are experiencing a motor tick, does it, does it last a certain amount of time and when you're in a conversation with someone and it comes up, how should that, how should the other person Speaker 1 00:07:51 And respond? So the ticks can range. They can be a real quick and then like a couple seconds go by. I can do it again. I can do a bunch of them in a row a whole bunch of times. Generally. I can't talk when I tick. So that kind of causes issues when I'm trying to have a conversation with somebody and I'm taking it, just like my breath, automatic. I automatically hold my breath subconsciously. I don't even realize I'm doing it. Um, so that causes issues. But for me personally, I want you to pretend like I'm not doing anything, like as if like I sneezed in the middle of the conversation or had to cough or something like that. Like, I don't want you to like every time, like, are you okay? Are you okay? Cause that would get old real fast. If it starts to get really bad. Speaker 1 00:08:37 That's when I don't mind, if somebody asks, if I'm okay, because we can have what's called ticket tax, they're very similar to like an anxiety attack or a panic attack or those anxiety and panic attacks can lead into a tick attack. And what that adjust is it just it's constant text. And I could be taking with multiple parts of my body at like, I'm not breathing very well and it can just come out of nowhere. I haven't, I have anxiety attacks that don't lead into tick attacks more often as an adult, but I do still have them or they'll just take over my body and I can't talk or anything. And I basically just need people to, thankfully it's only really happened when I'm at home or somewhere where I'm with people that understand and have been around me with Tourette's syndrome, my whole life pretty much, or really on time. Speaker 1 00:09:26 Because at that moment, I don't mind if somebody says, are you okay? I don't want them freaking out and like telling somebody to call an ambulance or anything like that because I know I'll come back. It's just a matter of knowing, I guess. And it's hard because it's like, I want you to know where that line is. Right. But like, but it's also hard. Like if I'm physically like getting really bad, I generally start crying when I'm in a Ticketek. So at that point, yeah. If I'm crying, you can certainly ask me if I'm okay. Um, it's just like, while we're having a conversation, I can tick a hundred times and if you stop to task me, if I'm okay every time or stop, every time I tick, like I just don't want that like drawn out, like overabundance of like calling it out kind of, you know what I mean? Speaker 0 00:10:13 Yeah. That's interesting with the, with the ticket tax and it sounds a little scary though, right? Cause you're not, you said you're not breathing. I mean, I don't, I mean, is your heart stopping at that moment or is it just the breath? Speaker 1 00:10:28 It's just breadth for the most part? Um, my heartbeat will get really fast for me. I have a relatively hard, fast heartbreak anyways, non Tourette syndrome related. But uh, yeah, my, the it's happened more often with my mother and um, my husband who is spectacular. He is the best person to have ever come into my life. He's very calm with it and he will, he'll start to like, he'll ask me if I'm okay. Obviously if it gets bad and he'll start to like rub my back and him and my mom, they both have to like pull me back and remind me to breathe. Like my mom would sit there and say, when I lived with my parents and say like, Britney, you have to breathe in through your nose, out through your mouth. And then she'll start to hear me not breathe again. And she literally it's like, she has to like teach me how to breathe in those moments because my mind is not thinking of that. It's I have no control over what my body's doing. And so like, I forget, like I forget these like basic commands. Speaker 0 00:11:26 Right. And do you have tick attacks or is there anything that makes them more common? I know you mentioned stress and or when you're really focused, the ticks are fewer versus more frequent. Anything that is triggering it, is it different for our region? Speaker 1 00:11:49 It can definitely be different for every person. Um, in general, in an abundance of any type of emotion can make, takes like a lot worse. So if I'm super stressed out, I'm going to be taking a lot. If I'm nervous or even like, after I get really angry, I, I might, I won't, I might not be ticking in that moment of the anger of my temper, but then like after my body like comes down from it, that's when all my ticks will release. And then on the opposite side of this and I actually just did something on it, um, is people don't realize that also happy and exciting emotions make tics worse, which is a double-edged sword. Cause like I'm a very excitable person. I am like, I'm like a child when I like my husband can come home with like a candy bar and it's like the best day ever for me. Speaker 1 00:12:38 I like that about myself. But in those moments where I'm really excited about like an event coming up. So like this time of year, I love Christmas time. So my ticks are always worse, especially when I was a kid, like when it was seeing it coming and everything else, like I was ticking nonstop and that's where it's like, it almost kind of like ruins that excitement a little bit. I'm like, I want to be excited, but my body just like battles against it. And that's what I think a lot of people don't realize is that any emotion, like, cause if I will say that I'm taking a lot and somebody is like, Oh, well what are you stressed out about? I'm like, well I'm not stressed. I'm unexcited, Speaker 0 00:13:16 Right? Yeah. It's like you said, that double edged sword, both ends of the spectrum getting those texts. And so obviously there's an, we're not here to cure all diseases, right? Cause there's no cure for mine. So the best thing that we can do is to help be proactive in accommodations and create an environment that is inclusive and tries to be low stress as possible. And so what are some of those things that you do for yourself, maybe in the home or in the workplace to create that, uh, re reduce, uh, reduction in stress? Speaker 1 00:13:57 So at home at home is where I can reduce it the most. I take the most at home, but, but that's mostly just cause like, I'm feel more, most comfortable to do it in after a day of work, when I get home, anything that didn't happen throughout the day happens. And so for me, what I, I mean, honestly I do, like, I like to sit and watch like television that I don't have to pay attention to like stupid TV sometimes. And I like to read coloring. So I've been coloring like, well, before this like adult coloring book craze has that started happening, but it's helps me out thing right now. Yeah. It's helped me out because it's given me more options, but um, I've always liked to color or do puzzles, stuff like that. Crossword puzzles, Sudoku puzzles are really good for me. Cause then I'm really concentrating and I really liked those ones. Cause I always like to like, see how fast I can get it done. And it's never as fast as I help. But um, I like doing those if it's really, really bad, I'll take a bath with like lavender, but I'm not a big bath person. I feel like it's a lot of work and then I get really bored. Speaker 0 00:15:04 Um, I'm not a bath fan. Yeah. I only do it if it's real bad. Speaker 1 00:15:11 I mostly like the puzzles and I, I take stuff call it's an all natural, cause I'm not on medication for my Tourette's syndrome. I was in college and in high school, but not anymore, I have a mild case, but it can get really, really bad some days still. So I take this stuff called rescue remedy. You can get it at health, food stores and stuff and you just put it in your water. I can put it directly under my tongue if it's getting bad. And that does seem to help me, especially at least if it's my anxiety, that's making the ticks worse. That'll at least help calm my Headspace down. And I like that because it is all natural and I don't have to worry about like any weird side effects from it. Speaker 0 00:15:50 Nice. And then kind of in the workplace, um, is there anything that you ask for in terms of accommodations? Speaker 1 00:15:59 The biggest thing that I just asked for people to do is like, let me handle it the way I need to. Like, if I tell my, when I get to the conversation of telling my manager, I tell him like, there might be times where I need to go up and like use the restroom or, or where I need to walk around the office a little bit more. Like I might need to be out of my chair more that day, because the more, if I'm taking a lot, I'm going to be thinking about it that much more at my desk there. And then that way it's going to cause that many more ticks. Cause I'm going to be stressed out about taking that much at my desk. So I'll need to let myself walk away, like, and I'll tell them, like, I know what I need to do. Speaker 1 00:16:35 Like I just need to go to the bathroom, have a few like breathing techniques, maybe take a lap. Like I just need you to let me do that. And then I promise I'll be back and like ready to go. And I, I just explained to them like every day is different in that. I always try to tell people like what you see at the office. Isn't half of what it really is in that every day, every hour and minute could be different. So if I have, I've been working at my job now I work for Nestle and I love it. There it's the best place I've ever worked. Awesome. Most people haven't seen me take like a lot and I always like, just want to know, like, just because you haven't yet doesn't mean it won't happen. And I like to preface that because I feel like sometimes when I have that bad day, people are like, Whoa, like all of a sudden she's doing this. Like seeing, like I don't want people to think I'm faking it, which I can't do anything about what people think at the end of the day. And really I don't care. But at the same time, I don't want to be accused of that. So I always really try to like drive that point home. Like, I don't know what I know what's going to happen as much as you do about my own naughty. Speaker 0 00:17:45 Yeah. It's, it's, it's delicate balance. I think at workplace of like disclosing your disability or not. And it really I'm in this diversity and inclusion course on with Cornell and learning all about, you know, what does an inclusive workspace really look like? And a lot of it starts with the trust and then that building that psychological safety and in order to create that psychological safety, it really, it really stems into communication about just being open, honest, and transparent. Right. As basic as that sounds. But do you ever talk about it? Like we have a disability resource group at our company and I'm very active in it. Do you have a disability resource group at Nestle? And then do you talk about trust and drum and be open and honest with the company about it? Speaker 1 00:18:38 Uh, yeah, we do. It's actually funny. You mentioned that because I was actually just asked to be on it a few months back. Yeah, we have what's called the thrivability network is what they call it. We have like three pillars to it. So we have like disability, critical illness and caregivers. So like any employees that are taking care of family members that have possibly have cancer or the critical illness that do have cancer or some kind of like chronic illness. And then obviously their disability, it's a relatively newer groups that we're still kind of getting our feet on the ground. But what they did was I posted a video cause I make YouTube videos about my life with Tourette's syndrome. And I posted a video at the beginning of tread syndrome awareness month to the group because we have what's called workplace and it's basically like work Facebook. Okay. And I posted it to that. Like I kind of like, I don't know why, like it was more scary for me to post it to that then to a YouTube, but it was exactly Speaker 0 00:19:36 Easy to just put something out in the open world and you have no idea really who's going to watch it. Right. But it's much harder to do a presentation, a talk or share your most vulnerabilities with the people that you spend the most time with. It's kind of crazy. Speaker 1 00:19:55 Yeah. I post it to them that, and that's why somebody reached out and they're like really love for you to be a part of this pillar. I was so excited. I'm all for it. And so the end of October, they actually asked me to be, I did like a virtual speaking event in like over 80 people signed onto the event. It was probably one of my biggest like speaking opportunities. Like people I've never been met through the company. Cause Nestle is a huge, it's a huge company. It's a global company. And so like people have never even met, were reaching out to me. And it was just like that moment, like, man, I'm like, it's like, I was meant to work here. Like I just feel so like, like they're not seeing me for like trust syndrome. Like, so when I bring it up, I know they're not like, Oh, well what does that mean? That this girl's not going to be able to do. It's just, that's just what she has and it's fine. And that's like, that's huge Speaker 0 00:20:49 For me. Yeah. Really crossing that bridge from, uh, seeing the disability as the issue versus seeing the person first and then just saying, Oh, you know, it just, that's part of her. That's who she is. Part of who she is. It is who she is. Right. And we all have our stuff and if we don't have it, now we may acquire it later. And so that's the beauty of it all. And in terms of, even as you age, you get more and more disabled in terms of physical ability. Right. No longer being able to walk a certain amount of steps and whatnot. So yeah. Disability impacts everyone in anyone at some point in their life. Definitely in terms of representation. So obviously you have, which is a really cool opportunity for you to have to speak about it internally at your company. What other representation have you seen on Trent syndrome, either at your company or externally in the world, like in the entertainment industry? Speaker 1 00:21:56 Um, so in the entertainment industry, it's, it's difficult to find those representations that are as true to a person with Tourette's syndrome and where we're not just used as like the punchline, but there are, we are coming, I think a little bit, we have come a long way, I guess I should say, I believe. So there is a film it's about a real person, Brad Cohen, who has Tourette's syndrome. He's like a lot of people with threatened rooms, like idol. He's just a great person. And he did a hallmark. There was a hallmark movie made about his life, where he became a teacher and now he's a vice principal of a school. And it was like him, his life of becoming like the teacher. He never had. I think I believe is like the tagline of it. And it's for me, like just an awesome movie. Speaker 1 00:22:40 And I've gotten to speak with him. I did a 5k where I raised funds for his foundation and it was like the most exciting thing for me. So there's that movie which is called front of the class and it's a hallmark movie and it's, it's fantastic. I recommend everybody to watch it. I actually had, when I started dating my husband, we've been together for a little over 11 years now. And when we started dating, I told him about it because the movie was coming on again. And I was like, I really want you to sit down and watch this with me. I just want you to kind of see what it can be like for me and his family ended up watching it. Like his man told his whole family that they had to watch it because our son's girlfriend has this and she wanted everybody to know and they all end up being super supportive. Speaker 1 00:23:24 They all, they all actually watched it. So that movie was really fantastic. I love it. I have it, I did a speech on it in college when I took speech in college and I used clips from the movie to talk about Tourette's syndrome. Um, and yeah, and then another really good one that came out last year. And I will say that it's probably one of the better that I've seen motherless Brooklyn with Edward Norton in it. So as far as I know, Edward Norton does not have Tourette syndrome, but he played a character with Tourette's syndrome and it wasn't him being like the butt of the joke. Like there was funny parts and they made some of his quirks and like the ticks in the movie, like to be laughed at, but in a, in a much different way. And it was just, it was, he was the main character who just happened to have OCD who just happened to have Tourette syndrome, but he was a smart person. Speaker 1 00:24:15 And he, like, it was just, for me, it was like made me emotional. And like, this is the first time I'm seeing like me on the Teton, like on the screen, like it's a man representing Tourette's syndrome, but like, it was a real representation. And I didn't realize how much, like, something like that with means to me, because most of the time I do brush it off when I see the jokes and everything, like they aggravate me, but I can't stay mad at something like that forever. Um, but I didn't realize how much something like that would mean to me. Like it, it made me emotional in the movie theater while I was watching it. Oh, Speaker 0 00:24:52 I think that representation is so important. And one thing that I saw recently was Barbie made a, a wheelchair and as like an accessory, and then this little girl, she received it for, you know, her birthday or something and is perfectly amazing picture of this little girl in a wheelchair with and holding the Barbie in a wheelchair. And it was like, wow, when you feel seen and heard, and you can look when, when companies are creating that inclusion, it's, it's so amazing because yeah, it's just like, wow, that's me. Speaker 1 00:25:35 Yeah. Speaker 0 00:25:35 Um, there's, there's really nothing better than that feeling of, wow. Someone saw me for me and wanted to make a movie out of it. Then I think on the other opposite end of that, you know, you, you gave two really awesome examples of movies that I would like to watch later. The first one was front of the class and what I was reading, I was quickly Googling the, the summary of it. And this caught me off guard a little bit. And I like to know your opinion on it. So it says that the summary says refusing to be beaten by his affliction Tourette syndrome, suffer Brad Cohen vows to become a teacher, overcoming prejudice, ignorance, and fear as he struggles to make his dream come true. The key word that stuck out for me there is it says that he suffers from Tourette syndrome. And do you feel that you suffer from tra syndrome or do you feel that it's just a part of you and that you don't suffer? Speaker 1 00:26:35 Um, for, I would say 99% of the time, it's just a part of me on those bad days. I would definitely be person that said that I suffer from it. And I do, I kind of do try to steer away from using phrases like that for me personally, just because I don't like it for my own mentality. I don't like to say I don't like to convince myself more of how bad it can be and how bad it gets, but it does get there. There are days where I never stopped moving. Like I end the day in tears because I'm just so tired. And because even though I'm tired, see people think we're like, Oh, well you're tired. You won't do it that much. No, I'm tired. So I'm even more stressed out about being tired. So I'm going to do it more. Like my body doesn't care that I'm tired if I can't stop it when I have energy, I'm certainly can't stop it when I'm tired. And so, yeah, there's some days where I feel like I am a suffer of Tourette syndrome, but I would say 99% of the time. Yeah. It's just who I am. It's what I do. There's no changing. It's obviously not going away. So I might as well make the best of it. Speaker 0 00:27:38 Yeah. Thank you for providing some more information on your opinion about the language. Cause I think language is so important and especially as we create that representation, that we're also using the right language around it. I know media is just intrude news. They love to choose words that are very, just very aggressive. Sometimes That's the right wording that I use. But I will say the cool thing about the front class is that it is a person who has Tourette's syndrome, not an actor who plays Tourette's syndrome. I think there's, Speaker 1 00:28:18 It's not him. Oh, it's not, but he was on set. So I talked to him about this movie. He actually was on one of my videos with me and he was there the whole time they get it. So being able to provide feedback that the guidelines were like, um, Speaker 0 00:28:35 Oh, so the movie wasn't was a documentary or I guess it was a documentary documentary about him, but he didn't play the role. It was an actor Speaker 1 00:28:44 That plays a role. Yes. Yep. Got Speaker 0 00:28:46 It. Okay. Yeah. I don't, I kind of go back and forth. I've seen a lot of movies recently coming out with, there's been a lot of disability representation, but they're actors portraying people with disabilities and it, but they're not real life person. I know. I don't know if you heard the news about the SIA, but I did got bashed har autism representation. Yes. I did have an amazing conversation with remode Reed, who is a character on Disney channels, TV show about that issue, right. Of representation of people who have disabilities, but aren't actually played as those characters in the movie. And he did make a good point being in the entertainment industry. And he said that, you know, there are a number of people that are absolutely amazing actors that can do incredible jobs after researching and studying and getting advice from people who have those disabilities and then creating the character to be the most authentic version as they can be. But even though it's not a hundred percent, it's 90% of the way there. Right. Right. So I don't know. I kind of go, I kind of lean towards, I wish there were people with disabilities playing the character who has a disability. Yeah. Speaker 1 00:30:14 Yes. I agree. Like a, yeah. It's like a line like yeah, I get, that's what they do. They're actors, they play roles and they play people that aren't themselves. But at the same time, like let's continue that bar and like let's raise the bar for more and find those actors that have that disability so that they can give the actual interpretation, not interpretation, but um, yeah. Give the actual role like, cause it's their life, they know nothing else. So Speaker 0 00:30:46 <inaudible> yup, exactly. I mean, there are doctors out there, but it's just got to find them. Right. Okay. So I know we've talked about a number of different topics from representation and the entertainment industry and just tried syndrome in general. Talk about your YouTube series. Speaker 1 00:31:08 So yeah, I have a YouTube channel. There are times where I go a little quiet. Sometimes my anxiety gets the best of me and I get to a point where like I haven't done it in like a couple of weeks. And so at that point I'm overwhelmed that I haven't already done it in a couple of weeks and it gets harder and harder to do it. And I also struggled because I don't want to make a video just to make one. I wanted to be honest and like mean something and really come from somewhere. So that's why like it's not always every single week, but I just basically talk about, I talk about Tourette's syndrome in general, my life with treads and Tourette syndrome, how it affects me and how I go about living my life and how I try to have this positive attitude about it. Speaker 1 00:31:48 Like again, like 99% of the time, people sometimes ask like to do a video on a bad tick day or when I'm having a Ticketek and I always have to re-explain like that. I'm not going to do that because I, the last thing I want to do is pick up a video camera and record myself. And it's also the last thing I think about when I'm in one of those moments, but I try to keep it very real with it. Like I don't edit the only videos I edit are when I'm doing them with other people. I just started doing that this year earlier this year where I started having people come on, my YouTube channels that also have Tourette's syndrome because I started thinking about it even more like people just learning about me with Tourette's syndrome is not going to give them the bigger picture and really drive home the point that it's different for everybody. Speaker 1 00:32:34 Like not two people with tread syndrome are gonna look the same, do the same things or the same way, or even feel the same way about it. And so I started asking people to come on and I have a lot of really awesome people like in the lineup coming up soon to start up with them again, next year at the beginning of next year in those videos where I'm doing with other people, I've noticed are the ones that connect with people the most. Because again, that's another representation. So that's another chance for somebody to be like, Hey, she's not quite like my, like me with my tread syndrome, but this person that she's talking to is, or like, I haven't seen another young girl with shred syndrome. Cause I mostly men you're more likely as a male to have Tourette's syndrome female. So I get that sometimes where like, I've never seen a girl with Tourette's syndrome and like them saying that to me, like, I just want people to know, like, even if I tell, like if I make one person learn what tread syndrome is for real, then I've done what I wanted to do with those videos, because it was incredibly nerve wrecking to make those videos because the internet is a place where everybody feels like they can just say whatever they want and everybody's super brave behind the keyboard. Speaker 1 00:33:45 So I was very scared to put it out there. I talked about it for probably a year or two before I finally just did it. And I remember sitting there with my laptop, just like hovering over the publish button of the first one. Like I want to say three or four years ago now. And I was so scared and I did it and I just like went to bed. I'm like, I'm not even gonna look at it again. And I'm like, it'll be like my mom that watches it and my grandma or somebody and that'll be it. And I, my husband woke me up and he's like, you need to get online and see, it's like, a lot of people are sharing your video and they're really liking it. And it just like gave me this motivation. Like I can't believe I'm having this positive feedback just by talking about it. Speaker 1 00:34:26 And it's been mostly really good. I mean, I have the occasional rude person, but yes, exactly. And that's something that I will never engage in so they can try and all they want, give him a tick yeah. Experience, making them I've slowly gotten more and more comfortable with them. Like I just, I let it all out. Like if I tick a tick, I'm not editing any of my takes out. Like it is fully sent me. No, you are. Right. Exactly. Yeah. Are there any like role models or celebrities that you look up to, or that you are seeing that you are seeing share a lot of information about trends syndrome? Um, so I would say Brad Cohen, who I talked about from that film earlier, he is probably one of the biggest inspirations in the turret world. Somebody else I really love is Sam comrade. Speaker 1 00:35:27 He's a comedian with Rett syndrome. He was actually on, America's got talent a couple of years ago and he's just a really cool down to earth guy. I think he's hilarious. And he does, he, does he make some jokes about Tourette's syndrome, but it's not like his whole thing. He's a comedian that has Tourette's and his story came from like he started making, he was getting made fun of, so then he tried to like, you know, basically switched that and started making fun of himself, but also just like telling jokes a lot. And then that changed, like the progression of how he saw it. I think, I believe if I'm reference referencing some of the stories I've heard him tell correctly, he's just a really cool person. And I found him on YouTube, one dime one night and I just fell in love with this comedy. Speaker 1 00:36:12 And he just, I mean, it's not hard to make me laugh, but he really makes me laugh. And my husband and I have met him a handful of times at shows that he's come to in. He always like, he remembers us and it's not just like the phony. I remember you, like, he brings things up that we've talked about before. And I just like, cause even after America's got talent where he got, because he got into like, I want to say the final five or four. So he got really far, like when I saw him on America's got talent when I saw him get through, like I started crying. Cause again, I'm like, man, it's right there for like the world to see like all of America to see like somebody with Tourette's syndrome, like killing it and not just getting made fun of, or being the joke in the movie again, it's just him. And he just happens to have Tourette's syndrome, just showing again where people that can do anything anybody else can do. And he, I just, I really like him as a person and I'm a big, big fan and follower of him. Nice, Speaker 0 00:37:13 Awesome. I'll have to check it out. And I know you're kind of talking about the one person that I know who has Tourette's syndrome has been public about it is Billie Eilish. And I watched one of her interviews where it says, when she's singing, she doesn't tick and that is her outlet for staying really focused. And I know for you, it's like coloring and puzzles and Sudoku. So I think that's just really interesting to me when you're really focused on something. Is it, you're not thinking about the ticks or are you just laser focused on a task and you're not thinking about anything. Speaker 1 00:37:52 I think it can be kind of like a mixture of like, not thinking about anything else, but also like my brain just like going somewhere else. Like I'm being somewhere, that's not my body taking. Cause when I do those puzzles and color and stuff, I still tick. But I will say when I used, I danced for 20 years, it was my favorite thing in life. Like I loved it so much. There was no better place for me than the dance studio or on stage. That was for me, I never ticked people didn't even know I had Tourette's syndrome like out once I was in that dance studio and dancing, like my body was mine. It was the first, it was the only time where, when I kicked my feet or flung my arms or anything is because I'm making it do it. And it was my free, like when I had a really bad day or week, I knew all I needed to do was get to that day of dance and I would be okay again, because that was just my time. Speaker 1 00:38:45 And for me with dance, that was just, I was just in another world for me mentally. And I was in a body that was mine again, which always felt incredible. And now I'm working out, kind of gets me there too. I love, I really enjoy exercising, but it will still take the only thing that I've done in my life or it would erase like my ticks. Like I've never even had treads and there was dancing and that was half the reason I did it so much or for so long, but I also just loved it. But yeah, I think it's just, my mind is finally like, it gives my mind something else to think about. Cause like if I'm just sitting here in a quiet room and I start taking them, that's all I'm thinking about. But if I start reading and getting brought into a new world or coloring and getting into that little world, like yeah, my brain just like, alright, this is, this is where we're at now. And it, it gets that energy out in a different way. So that pent up energy, it's releasing it in a much calmer way I should say. Yeah. Speaker 0 00:39:46 I've heard you say a few times the butt of the joke with Tourette's syndrome and can you provide an example? So that next time I'm reading something or I'm watching a movie, I can point those out and be like, that's not a problem. Speaker 1 00:40:03 So I know, and I think this is gonna sound cheesy, but uh, first bring it on moving. I don't know why this is the first one that comes to my head, but there is a part where like they're auditioning cheerleaders or whatever. I don't know. I haven't even seen this movie forever. I don't know why. It's the first thing. Even in my head. That's a great, Speaker 0 00:40:23 Yeah. I mean I do like it Speaker 1 00:40:24 Still, it's the only good one out of all of them, but uh, they have a point where they audition Shaler and I believe like one comes in and she starts swearing uncontrollably, like saying all these inappropriate things. And she says that she has Tourette syndrome, but it's, it's meant to be like that joke. Like that's all that girl is there for is just to make the joke of trust syndrome. Like there's no other storyline to her. She never shows up again. Like it just that quick, Hey, let's make fun of Tourette's syndrome and then we'll go easy laugh, and then we'll move on. And it's just like, it's that moment where like, I'll, I'll give a look like I'll look at my husband and be like, really like we have to keep doing this. Right. Speaker 0 00:41:05 Yeah. As if, because swearing is meant to be funny. Yeah. Speaker 1 00:41:10 That's the thing too. Like aren't we past this time? Like every adult does it like, come on. Speaker 0 00:41:16 Yeah. Okay. Yeah. I'll I'll I'm going to go back and watch that clip and see. Yeah. Just so that I have that visualization that I like, okay, go ahead. Speaker 1 00:41:30 Uh, that's the thing too, like people don't realize, like it's not just like swear words when people have vocal ticks, like they can literally yell any word. Like they could be triggered by seeing like a dog or a cat and they can yell cat or dog or they can have a whole phrase that they say over and over again. Or somebody saying one thing can trigger. Like for me, cause I have mostly vocal ticks, like movements on people can trigger me to start having almost like a mimicking them, but it's because my body needs to do it now. Like so people that move their eyebrows a lot, it it's a very big trigger for me, for facial tics. Very big. Like if people are on TV and they're doing something a lot, like I have to like look away because I don't want to develop it. Cause I can develop it as, as a tick. And I don't want that to happen Speaker 0 00:42:17 When you're watching something a movement happened. You basically can take that on as a movement that you're, that tick would develop yes. As that movement. Oh, that's interesting. Yeah. Speaker 1 00:42:30 It's weird. And it's so hard. Like it's so weird to explain to people. Yeah. Speaker 0 00:42:35 It's like you are becoming that movement just by watching it. Yeah. Interesting. Hmm. Well thank you. Is there anything else that you want to share about tread syndrome? Maybe your plugs, where can people find Speaker 1 00:42:49 Mind you? Uh, yeah, of course. So they can find me the most things that they'll see me post as far as Tourette's syndrome stuff goes is my YouTube page, which is just simple. It's youtube.com/britney Wolf. And it's B R I T N E Y. So it's spelled like Brittany Spears is what I always have to tell people. Um, uh, you find me there and then I have a Facebook page that's dedicated to tread syndrome, which is facebook.com/one tick at a time. That's kind of like my slogan and thing that I always use on stuff. Um, I have a, I have a Twitter as well, which is one ticket at a time, but I'm going to be honest. I rarely use it. I'm not a huge fan of Twitter. I don't understand it very well. Speaker 1 00:43:34 I get lost. And like who's talking to who and when. And so it's like, I'm tagged with like a bunch of other people and like, I don't know when you're talking to me or just tagging us to tag us. Yeah. I can never tell. So I usually just get frustrated and barely do anything on it, but I do try to post my videos on there, but the most you'll see is the Facebook YouTube. And then I guess my Instagram, which is just underscore Britney Wolf and that's not just Tourette syndrome. That's like, you'll mostly see truck videos, pictures of my dogs. And I'm pretty obsessed dog dogma. Speaker 0 00:44:13 That's funny. Oh, another random question that just came into my mind was the word Twitch, because I remember you used that at the very beginning. I know there's a company called Twitch. That's really big. Is there any correlation there? Is that just, they just pick the word Twitch. Okay. Oh, okay. Got it. Got it. All right. Yep. I didn't know if there was any correlation there. All right. Cool. I guess if there was yeah. All right, Brittany, thank you so much for your time and sharing all about tread syndrome and how we can be more inclusive and supportive allies for your community. Really appreciate it. Well, thank you for having me. It was so nice talking to you and yeah, I really appreciate being here. Like I said. Thank you. Bye bye. Speaker 2 00:45:10 Thank you friends for listening. Please rate and follow this podcast or text card at (470) 588-1215 with comments and suggestions tune in next week for another disability topic.

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