Growing Bold and living with Tourette Syndrome

Additional information

• Tourette Syndrome Awareness Australia
• Tourette Syndrome Awareness Movement

Growing Bold and living with Tourette Syndrom with Mandy and Connor Maisy

Pete: 

Welcome to the Grow Bold with Disability podcast brought to you by Feros Care. A podcast dedicated to smashing stereotypes and talking about the things people with disability care about most to help us live bolder, healthier, better-connected lives. I'm journalist Pete Timbs.  

Tristram:  

And I'm Tristram Peters. I work for disability service directory, ClickAbility, and am a wheelchair user living with spinal muscular atrophy.

Pete:

Today's episode of Grow Bold with Disability is Growing Bold living with Tourette Syndrome. Our guests are the president of Tourette Syndrome Association of Australia and mother of three kids with Tourettes, Mandy Maisy and her eldest son, and Tourettes Awareness Ambassador, Connor. In this episode, we'll find out just what is Tourette Syndrome, how it affects those with it and what we as a society can do to help understand those with Tourettes. And there is a language warning on this episode. There is a fair bit of swearing.

Tristram:

So, Mandy, let's start with you. Can you explain to us just what Tourette Syndrome is?

Mandy:

Tourette Syndrome is a neurological condition where the brain produces too many neurotransmitters and the brain's natural breaks aren't able to stop them so they get overwhelmed. The neurotransmitters are things that transmit messages for movement or sound vocalisations and things like that. So the brain just gets overwhelmed. It has leaky breaks. The body ends up making strange movements, which are called tics or strange vocalisations like sniffs grunts, words, phrases, swear words. Things like that.

Pete:

So Mandy Tourettes manifest itself in tics as you say. Now, from my little bit of research, there are two classifications of tics. There is the simple tic and the complex. Can you tell us the difference between the two?

Mandy:

Right. There are motor tics and vocal tics. And they are split up into complex and simple. So, a simple motor tic would be a blink or a shrug or a nose wrinkle or something like that. Whereas a complex motor tic would be something like completing a movement, moving your arm, doing a forward fold. We've got a complex motor tic in our house where one of my kids has to stand up, walk across the room, tap you on the shoulder, and say something in your ear. So complex really is actually complex.

When it comes to your vocal ticks. A simple vocal tic would be something like a squeak or a grunt or sniff, a little chuckle, something like that. Whereas a complex vocal tic would be something like a word or a phrase. My middle one will do entire versus of song with the words changed so it can be quite again complex.

Tristram:

Now Connor, if you don't mind telling us a little bit about your Tourettes because you started seeing symptoms much later in life than your siblings I believe.

Connor:

Yeah, my tics developed much later in my life to where they were noticeable anyway. It wasn't until I was about 21, 22 that they really started coming on. They kind of grew very, very rapidly. You know, I went from what I would you consider a simple motion tic where I would just throw my head backwards in a relatively violent motion, but it would just be thrown my head backwards, to within nine months, I was saying complete complex sentences. I was saying complete racist sentences while with my friends trying to buy a sandwich or whatever.

Pete:

Now, Mandy. None of the kids actually showed any signs of Tourettes until what I would call recently, what within the last eight years?

Mandy:

Within the last five years.

Pete:

The last five years?

How did this start manifesting itself?

Mandy:

Initially, it was interesting. We didn't notice that Connor had simple motor and vocal tics. Because kids sniff, kids grunt. Kids make strange movements. So, we didn't notice with Connor. It was the youngest Izzy. When she was about two, she would make funny sniffs and pull funny faces. She would be blinking all the time. So, we did the usual tests. Took her to the doctor. Got her checked out for repetitive colds and things. Took her to the opticians to get her eyes checked because she was constantly squinting or blinking. Get the haircut to make sure hair wasn't in her eyes. Then we realised as it got a little bit more complex. We realised that there was something else going on. So, we took her to get her seen by a paediatrician, who then said that they thought it was Tourette Syndrome.

Then it wasn't until several months after that that Connor really started becoming quite noticeable with more complex tics. And then we realised, because we knew what Tourette Syndrome looked like. We were then able to realise that that was what Connor was going through. And then the middle one about one 12 months later started ticking as well.

Tristram:

Right, so Connor then for yourself, were the tics getting progressively worse. And if so, how are they getting worse?

Connor:

So, they wax and wane. Some days they could be worse. Some days they could be better. And it can even happen on a more long-term scale. At the moment I'm in a relatively calm period for myself anyway, you know? It's mostly just like small motor tics or like tapping of my face and things like that. And then only really, at the moment it's quite bad, because I get set off by the cold. So, every time there's like a big cold chill or a cold breeze, it'll set me off.

And then I end up having more violent tics, you know, at the moment because it's cold, weirdly, but it's probably, I would hope about as bad as it will ever. But it's more that waxing and waning where sometimes it's better. Some days it's worse. Like sometimes I've gone for a week and a half without a tic at all. And it seems really strange because I'm like maybe that's it forever. Or maybe I've been faking this entire time for 4.5 years. And then all of a sudden, a week and a half later, I go ‘piss’ and I'm like, oh no, there you go.

I've definitely got Tourettes. It’s not gone anywhere.

Mandy:

Can I make the distinction there, guys? When he says more violent, he means, as in more pronounced as opposed to actually being violent.

Connor:

Yeah, sorry there.

Pete:

Well, actually, speaking of that, your middle child Void. She has quite physical tics. Is that dangerous for her and people around her?

Mandy:

It can be. We actually do know of a few people that have, Void tics are actually not terribly violent at the moment, as in physical, they go through stages. Things get thrown a lot. But we do know we do know of a few teenagers that have quite violent ticks and people do get injured.

Somebody can be punched in the face or punched in the shoulder or punched in the back. Connor actually took a flying kick to the back a couple of years ago by a teenager. And that was actually a tic. Sounds really weird, but we were at camp. There was a flying kick off a staircase into Connor's back, which caused him quite a lot of damage. So, yeah, they are hard to deal with and you just have to learn to distance yourself if you have a violent tic. You have to kind of pull back and stay away from people a little bit.

Connor:

Corona Virus has weirdly been very helpful for that.

Everyone started keeping a distance away from you. It's been quite good, because for me, sometimes I get a need to touch people. But it's only if they're within touching distance. With people sticking to that distance, it is actually a lot better for me because I'm not then trying to touch them or like giving them the finger and stuff cause they've given me that distance. Corona virus has actually been a slight blessing, I think.

Tristram:

The one silver lining to Corona virus.

Connor:

Exactly.

Pete:

Mandy, I just want to ask you, you mentioned that the kid's obviously with Izzy, when she was young, you started noticing her tics. And then you realised that Connor has got tics as well. And then Void came on very quickly.

Mandy:

Yes.

Pete:

Is there a connection? Does one set off another? Is there any scientific background into that?

Mandy:

It's genetic anyway, so they would have all already had Tourettes. But it just wasn't necessarily evident. It wasn't actually showing its ugly head so to speak. When they are together they tic way more, which is great when we have a family gathering, as you can imagine. It's like a three-ring circus. But yes, they can set each other off. They'll pick each other's tics up. Connor coined a phrase a while back. They tend to trade ticks like Pokemon cards when they're together. Or they will have certain people set off certain tics. So if there's something you don't like, unfortunately, they might get the brunt of your tics or somebody interesting or somebody new to you will get the brunt of the tics. Because that is the person that you think, I really want to talk to them. But I'm a bit nervous, and so then you'll really tic around them. But with regard to Voids tics becoming evident because Izzy and Connor were ticking, I don't think so.

I think she would already have Tourettes. They already were genetically predisposed to it. It was just a matter of when it came out.

Tristram:

Sure, and I mean, also, all your kids have developed Coprolalia. Have I pronounced that correctly?

Mandy:

Coprolalia.

Tristram:

There you go. Thank you very much. Can you explain in a little bit more detail what that is as well?

Mandy:

So 10% of the population with Tourettes or thereabouts has something called Coprolalia. That is obscene words, phrases or racist slurs, things like that. So that's part of the complex tics. It's another dimension to it. But there is also copropraxia, which is obscene gestures, so you will see some people with Tourette syndrome give people the finger or make other obscene gestures. So that's copropraxia. There's also Coprographia, which is obscene writing. So sometimes you'll just get rude texts from people or penises drawn on things. That's a common one. I actually end up with the word penis written on my arm quite a lot by my youngest, because she has Coprographia as well. And then you've got echolalia, which is echoing things that other people say and palilalia, which is repeating the things that you've said over and over again.

Pete:

Wow there is a lot of them. Now Connor, with the Coprolalia, how does that make you feel when you have an outburst, when you're in public?

Connor:

When I first started, it was honestly, the most horrifying thing that can happen to you because it's like just the worst things that you can say sometimes and things that you can't even imagine you would say.

But for me I've actually just learnt to kind of just roll with it, and it's like I've given mine a name. His name is Barry. He's a bit of a racist asshole, it's almost like I've grown detached from the things that come out when I have the tics, you know. So, it's almost like I can laugh at them as if it's like some horrible person has said them instead of me now because I had one yesterday as well. My girl from was doing her a driving test on. We were at the Motor Transport place and there's a guy stood at the front letting people in because the Corona virus restrictions. And I was like ‘only faggots wear skinny jeans’. And he was the only dude around wearing skinny jeans, and I just had to then look him in the eye as he went “take a number.” I was like sorry mate.

Pete:

Do you ever say sorry I’ve got Tourettes?

Connor:

Definitely. But for the most part I think a lot of people can kind of understand because I’m relatively frequent with the. I don't look completely neuro typical and then just swear out of the blue. Generally, there's a build-up. I'm generally doing hand motions or like my head's nodding or I'm trying to click my tongue or something.

Mandy:

It does become exhausting, though the constant apologies. I think that's why he gets to the point where you say sorry so often that you would just be a walking sorry sign.

Pete:

Maybe you should get a T shirt made Connor.

Connor:

Yeah, it's a great idea, but then I'd have to wear the same fucking T shirt every day, you know? Luckily the Tourettes Association sell hats. Hats are quite a good one because you don't wear a hat every day, you know? And so the days that you are going to wear a heart, at least you represent them.

Tristram:

In terms of employment. Has it affected your employment at all?

What impact does it have in that space?

Connor:

Yeah, it definitely does. I've been happily employed now for about two years with a fantastic company, Princess Polly. They sell women's clothing online. But like before I found my job with them, it was exceedingly difficult. Like I was even with a disability service provider, like a person who is designed to help disabled people find jobs. And they essentially told me to try and hide my tics or lie about how bad they are in my interviews. Otherwise, people wouldn't want to hire me. You know what I mean? To hear that from a person whose entire job it is is to help me find a job is a bit disheartened, you know. More often than not, it's just people aren't willing to give us a shot, you know what I mean? They think they can't handle it and that it's going to be a lot of work. And it's like for the most part, it's not. I swear and I slap my desk a bit, but other than that, my KPIs at my job are actually better than anyone else. Like I'm fantastic at my job. I just swear while I'm doing it.

Pete:

Now people with Tourettes do experience higher rates of self isolation and depression. Do you go through those emotions a bit, too?

Connor:

Yeah, definitely. It can be like super isolating at times often because you feel like you can't just live a normal life, you know what I mean. And a lot of things that most people would take for granted are like quite big events or journeys for us. You know, I definitely have struggled with lots of depression in my past. I am bipolar myself. So that compounds onto it as well. So learning to live with that, I more take every single day as it comes. It actually helps me kind of evaluate my life more if that makes any sense?

Because when I look at it on the long scale, it is a huge picture and it is a massive journey. But if I just look to the horizon, which is tomorrow, then that's a lot easier to make, you know. And so for me, like that's the message I try to pass on to the kids and teenagers I speak to us well. Life with Tourettes is never going to be easy. It's going to be a long and hard journey, but life is a long and hard journey anyway. But at least we're going to come out with some level of determination and strength just from being able to survive and really push through what we go through.

Tristram:

Such a powerful, powerful message. Mandy, how have you seen Tourettes affect the kids outside of tics? I mean, it's obviously built This strength and resilience that is really powerful.

Mandy:

We did make a really strong point of saying, well I made a very strong point of saying to the kids that there are so many people out there with Tourettes that don't have a voice or don't feel like they can stand up for themselves. As a family, if we can do that, if we can stand up and be counted and put ourselves out there, get the awareness out there and just stand firm for the people that can't actually do it for themselves. So we've kind of taken on the mantle as a family to be there to advocate for other people with Tourettes. But it is really hard. I mean, yesterday I got a phone call from the school for my youngest Izzy to say that her legs had stopped working. So I actually had to go and get her from the library at school and carry her to the car. Luckily, we've got a wheelchair at home. But she woke up this morning and her legs were still not working.

It’s silly things like that. Having to pick her up and put her on the toilet and get her off the toilet and get dressed. And all these things that she would normally do for herself that for no apparent reason just suddenly couldn't do. Then I got a phone call today lunchtime to say that her legs had started working again so the wheelchair that she's taken to school was superfluous to requirements. And you've gotta roll with the punches you've just got to. I could have just said, Oh, your legs aren't working today so stay home. But it was a case of no your legs aren't working, tough luck. Life's hard. Suck it up princess. Off you go. Because there are people with it so much worse than we have.

Pete:

Mandy, what's it like for you as a mom? Do you have your downtime just going like I can't deal with this anymore.

Mandy:

Yeah, well, but then don't all parents.

Pete:

Do you get frustrated. Like, you know, the fact that I know she's got Tourettes but it's like, come on. The legs, you've got to carry her to the toilet, the shower.

Mandy:

Yeah, well, you know, there's physically nothing wrong with your legs. Why is your brain doing this to you? I really could do without this right now. Oh, the frustration. Absolutely. When they're all ticking and we've got cockatiels at home as well. So, we've got two cockatiels, two budgies, a dog and three kids with Tourettes. Sometimes the house is complete bedlam. You just want to go shut up. And sometimes I might under my breath. Or maybe I might say a bit louder. And you do because the frustration is definitely there because we're all human. But I just think my kids have got it way worse than I have.

They're the ones that are actually living with it. At some point, you know, Connor goes home to his place now so I haven't got to deal with his Tourettes. But he still has. And when the younger two get older and they leave home their Tourettes will be gone with them. They will still have to live with it and I won't. So, from my point of view, the best I can do is be as supportive as loving as I can as a parent. Do everything I can for them to make the world a better place for them with Tourettes and help them grow into the people that they need to be.

Stop being such a narcissist, you bitch!

Tristram:

There you go. And now Connor in terms of Tourettes, are there any treatments for it? Are there available treatments or is it just as your mum was saying you live with it. You grow and learn to adapt to it.

Connor:

Like neurologists will definitely happily suggest plenty of medications that have various possible benefits but like most of them are shooting in the dark. Like when I would go see my neurologist and I'd actually speak to them and say, what do you think this is going to do? They go, I don't know. But it works for other things that are similar. So maybe it'll work. Why don't you just try it? And it feels like a lot of doctors really are generally just shooting in the dark. For me I found a lot of it was learning to come to terms with it and reduce my stress and anxiety. You know, the second I worked on not being as anxious my tics weren’t as bad. I wasn’t feeding into that cycle as often, you know, and I try and live as much of a relaxing and kind of, you know, happy life as I can in order to reduce my possibility of ticking constantly. You know, there are possible treatments.

There's something called deep brain stimulation, which is actually something they use for people with Parkinsons. There's possibility in that. But there are lots of horror stories and it doesn't seem ideal, you know, to put electrodes into your brain in order to try and stop something that is sometimes painful most of the time an inconvenience, you know. And then there's also cannabis. Cannabis can work really well. Medicinal trials show amazing prom promise. Then there's also, I was speaking to a lady recently about some research that has been done into psilocybin mushrooms as well, and using those in a therapy because it promotes neurogenesis. The idea is that maybe you could help teach your brain how to create new pathways so that you're not swearing or you're not doing these things, and you can help use, like cognitive behavioural intervention therapy to instead do something else, you know, which is normally very difficult. But they're basically saying that through the use of that, there's the possibility that you could do that, help your brain not do tics as often.

Pete:

It's a bit more natural to, so you're willing to give that stuff ago?

Connor:

Definitely. I think like those things are as good a chance as anything. Like I tried all the different medications the neurologist gave me. Lots of them they make me sleepy. They may be grouchy. Lots of them made me put on hideous amounts of weight, which for a person who used to have an eating disorder is definitely not ideal, so it's just it's a combination of things, you know. I'm definitely willing to try anything but I think acceptance is the real answer. You know, like all those things will help on an individual level. But who knows to what scale.

The main thing we need is that just acceptance of ourselves and from other people.

Pete:

What does the research say as you get older? Will the symptoms lessen or the plateau and it just doesn't never goes away.

Connor:

Doctors say that it fades with age, but doctors are generally not correct about that. What you get better is hiding it and controlling it. You know, the more often you do a tic, the more you recognise when it's going to happen. And the more as you get older are able to almost like have a level of self awareness in your brain to not do it.

Mandy:

Or camouflage it.

Connor:

Or camouflage, you know, or do something else. Like I regularly click my tongue, which is like me trying to do anything but what my brain wants me to do, you know. And I could do that, but only because I'm an adult. And I've got that level of self-awareness that this is a thing I don't want to do and I know what's happening, But I know plenty of other adults with Tourettes, even people who have now developed as adults enough to really kind of dispute what doctors say that it should fade with age. It really is just you get better at managing and hiding and just living with it, you know what I mean? Like, I’ve met a couple of people recently who told me, I thought that maybe I did, but it doesn't bother me enough to get it checked out, you know? Because if it's not bothering you, you're not going to end up going to get it checked out. Are you? You know, So it's like there's probably loads of people out there who have it and don't even realise.

Tristram:

And we often get so caught up in talking about diagnoses and treatments and all those things. I mean, let's talk Connor about what your dreams are for the future, what is on your radar coming up?

Connor:

I'm not sure at the moment. For the most part, I've really just been trying to get my own attitude and perspective on life to a really good place which I've really done. I am in definitely the best place and ready to do so much more with my life in the moment. But really, definitely I think down the line, I just want to help other people reach the same place I have. Maybe without having to take the same ridiculous journey that I did, you know, because there are lots of shortcuts to finding yourself. Kind of self actualising and really be the best to you. It's an attitude thing and something that we do every day. I think you know, I'd really just love to help people find that same attitude.

Pete:

Nice one. Mandy that brings me to you. You’re president of Tourette Syndrome Association of Australia as we mentioned the start. Tell us what the association does.

Mandy:

The Association is really there to try and raise awareness for Tourette syndrome and to try and educate everybody. The police service, the medical establishment and the education establishments were trying to educate them in how to handle people with Tourettes. We're also there to provide support for families with Tourettes or people with Tourette's. We have an annual camp programme which runs a camp in each of the States where families of people with Tourettes can all get together and spend time together. And you just chill out and not stress about having Tourettes, which is really watching. You know, you just can get on with it, which is great. We also have in most states, there are several support groups, so a lot of people find their local area, there is a support group that they can meet up. We had a meet up this weekend just gone.

We have 35 people turn up to our meet up at the Hinze Dam, which was incredible. We were all there for about five hours. It was amazing and everybody was just able to chill out and know that even if people are staring, you've got people that have got your back. And you can swap stories and you can just get the emotional support from other people that know exactly what you're going through, which is great.

Tristram:

In terms of the camps, the meet ups, I mean, as we've alluded to it’s not just about helping the kids, but the whole families as well isn't it. It’s about that community and educating everyone?

Mandy:

Tourette syndrome affects the whole family. Even if you've just got one child with Tourettes, it will affect the way the whole family runs because you don't go out in public as much as you would if your kids didn't have Tourettes. You don't go on holiday to the places that you might want to go to, and you certainly don't go to nice posh restaurants. You know, it's like some places are just not the place to go. I'm not going to go to the Plaza Versace and expect that my kids are going to come out without breaking something. Do you know what I mean? So, you do? It does become socially isolating, even as a family. And knowing that whenever you go out as a family, there's going to be something. Somebody's going to tic. Somebody's going to get upset. Somebody's going to be looking. There's that constant “is it worth the aggro?” The problem is with Tourettes is that the majority of people with Tourettes have what we would call a co-morbid, so they'll have autism. They'll have OCD. They'll have anxiety in there. There's a whole plethora of different, we call it alphabet soup. There is a whole plethora of things that go with Tourette syndrome.

So it's very rare that you've got a family that's gregarious and go out and have fun and do great stuff because they just don't. It's in the hard basket.

Pete:

Mandy, if someone thinks their kids showing signs of Tourettes, what do you suggest they do?

Mandy:

So to be diagnosed with Tourette syndrome you've got to have motor and vocal tics for 12 months. So what I would say is, if you notice your kid ticking or you think your kid is ticking, just make a note off what the ticks are. You don't have to do anything massive, just, you know, a head nod, squint or whatever, they don't have to be constantly present for 12 months, but they have to be a regular feature for 12 months. Once you've got that, you can go and see either a developmental paediatrician or you can see a neurologist or you can see a psychiatrist and they can diagnose it. It should be enough to just present them with the ‘this has been going on for 12 months. Here's my evidence. It started here. It's still going now’, or whatever. They should be able to diagnose it from there. If they don't, then they're not doing their job properly.

Pete:

And they get in contact with you guys at the Association.

Mandy:

Absolutely. If you think your child has got Tourette syndrome, absolutely. Look us up on Facebook or look us up on the website. We are there to guide people, we are there to help. There's always somebody that's willing to give them the benefit their experience and hold the hand, really. We need to be there for each other. And it's as I said when I found the Tourette Syndrome Association, before I became president, before I was on the committee, before I was a support group leader, I found my tribe when I found the Tourette Syndrome Association.

I felt like I had my people around me, which is why I got involved and which is why I've ended up taking on what I have is because I feel I need to get back.

Tristram:

Perfect. Now Connor our podcast is called Grow Bold with Disability and we like to always ask our guests What does living a bold life mean to you?

Connor:

Living a bold life to me would mean living a life that touches a lot of other people. You know, a life that really makes a mark with others because great men plant trees of the shade of which they'll never sit, you know? And I think that's a really important message for lots of people to take. All that you can do is be the best you and leave the best mark you ever can. You're only going to get one shot, so you might as well leave the message you want.

Pete:

Beautiful. And Mandy, we also ask you what does living a bold life mean to you.

Mandy:

Stand up and be counted. Plant your flag, stand up and be counted.

Pete:

Listeners can find out more about Mandy, Connor and the Tourette Syndrome Association of Australia in the links provided in today's show notes. Make sure you check that out. Mandy and Connor, thank you so much for joining us here today on Grow Bold with Disability brought to you by Feros Care.

Mandy:

Thank you for having us been awesome to talk to you.

Connor:

Thank you so much.

End credit:

This podcast is brought to you by Feros Care, an NDIS partner delivering local area coordination services in Queensland, South Australia and the Australian Capital Territory. Feros Care is a people care organization committed to helping people live bolder lives. We call it Growing Bold. For over 30 years, Feros has been making it real for both older Australians and those living with disability. To find out more head to www.feroscare.com.au  

There is a language warning on this episode as there is swearing in it. The content and views discussed in this podcast series are those of the individuals involved. They are not necessarily condoned by, or, are the views of Feros Care or its employees.