Tourette’s Syndrome Documentary

Paul: Good evening ladies
and gentlemen… My name’s Paul Barrett. And I have Tourette’s syndrome. About six years ago the playwright
Michelanne Forster… who has known me for a long time… and in a number of who’s plays
I have appeared. She said, “I never knew you had Tourette’s” and she immediately said
“That’s your one man show. Yes!” “And we’ll have a piano because
you’re a musician too,” and she immediately conceived
the whole thing. For most sufferers, Tourette’s syndrome
is characterised… by compulsive and convulsive
twitching or ticing. I don’t recall observing it
in myself first. The first person was a little school friend
of mine – I was eight or nine… and I still recall to this day to
the exact point on the pavement… where we were when she said,
“Why do you keep doing that?” And I had this compulsion to
keep turning in circles. And then I had to turn the
other way to balance it. And I remember Lynn pointing
at me and saying… “Why do you keep turning
round like that?” Of course I had no idea,
it just felt good. It was something that I had to do. And she made me immediately
conscious that… yes I was doing this and
I had no answer for it. But that was just the beginning and
by my teens they were pretty bad. My name is Analise, f…
I’m 11 years old in November. Smiley face! (laughs). Shut the f… up! I have f… Tourette’s syndrome,
so f…, f…, sorry… I have tics f… so please
don’t pick on me. And f… and they, f….
f….! I’m Matthew and I’m nearly 14 years. I live in West Melton. When you do something
it can be a vocal or physical tic… It’s like a hiccup and you
can’t really control it. I can control it every now and then. I’m Tania Humphries and
I live in Rangiora. And I was diagnosed with Tourette’s
about seven or eight years ago. I’ve got four kids aged from
seventeen to three years. It’s a big joke pretty much to them,
they find my tics hilarious. They know to avoid mum
when mum’s ticing. Hello rabbit. She has some move tics and some
other tics she goes, “Honk honk toot.” She can hit Cayden eight times,
like this… I know that because Cayden hates it. Every time at dinner she
hits Cayden (laughs). I’ve burnt myself in the kitchen. I’ve had a small tic and dropped a
ham steak into a pan with oil in it. And it splattered up and got me. Other than that I don’t worry
too much about it. Oh yeah and throwing drinks at people. Now these tics are mainly physical. There’s eye blinking, neck jerking,
shoulder shrugging, jaw jutting. You name it we’ll twitch it. Yes eyes and head mainly, they’re
very common ones those. You’ll see a lot of people with Tourette’s
doing variations on that over and over. It’s exhausting and deeply humiliating. Because you’re completely conscious… it’s not like fit where you black out. You’re horrendously conscious
but you can’t stop it. I’ve had throat clearing tics where
I was always going, “coghh coghh.” I use to clap my hands and
stomp my feet. And my husband would call
that our ‘Olay tic’… because there was a
Spanish theme to it. I hit myself and I hit other people. My hands will fly out and
I’ll collect somebody. Or they can be right there
when my hands go. I now kick. I swear sometimes. I have lots of vocal ones where
I go, “click click” or “pop pop.” I have to go, “honk honk” and “toot toot.” There are a lot of those sorts of ones. “Honk honk honk.” People think it’s that thing where you
yell out obscenities or profanities… in very inappropriate places in public. Well, I’m sorry if this disappoints you… but only 10% of people with Tourette’s
have that particular potty-mouth syndrome. And I’m not one of them. So p… off you f… (?)
Just kidding! F… I say f… I say the “F” word. I, f…, f…, sorry. I kind of do pull the “finger” sometimes. Coprolalia is the urge to
express or release… inappropriate words in
inappropriate places… in inappropriate times. I think it probably has something
to do with that adrenaline response, of saying something that
people react to… and it gives them… a good reaction. So, how it happens I really don’t know… because you can have children
as young as five with coprolalia. And I just don’t know where it comes from. It’s a really bizarre, bizarre tic to have. I am! F***! I am! It’s not in there. Sorry. Robyn: But she is on the severe end
of the spectrum for Tourette’s syndrome. She has quite severe motor tics
as well as the vocal tics. I don’t know. Nobody knows why
they get the coprolalia. It’s just luck of the draw really. Only about 10% of people with
Tourette’s have that. Only about 10%! But they’re the ones who get
interviewed on Oprah. Or who get mocked – and
that’s fine – on South Park. Have you seen that episode where
somebody’s like, “Oh I’ve got Tourette’s.” Or there was even a
character on our own… ‘Shortland Street’ who had coprolalia. Now you might have heard
the word coprolalia. You might have asked yourself,
“What does that mean?” Well, Copro means ‘feces’ in Greek.
Yes ‘poos.’ So, Coprolalia means ‘talking obscene.’ Yes it’s fun to learn Greek
the Tourette’s way. (yodeling) Yes it’s fun to learn Greek,
it’s so easy to speak. (yodeling) “Snort, snort, f…! f…! It usually starts in childhood. It’s usually at its worst in teens. It’s often gone through the 20s
and early adulthood. Not in my case unfortunately. Early puberty, and my tics are getting
more and more noticeable… especially to my mother… “Ken, you really need to
have a word with Paul”… “I can’t take him anywhere without
him doing all this twitch business.” “Ken are you listening?” “Hmmm?” “Paul, he came into the bank the other
day and everyone noticed!” “Can’t say I’ve noticed anything myself.” “I’m sure he’ll be fine.” “Oh Dad, I wasn’t fine!” By teens I was in full flight with the
obsessive repeating tics… with eyes, head jerks, sniffing,
not too many vocal ones. Mainly physical ones. Which the bugger of it was, apart
from the humiliation… and the fact that you get very sore… as if being a teenager isn’t difficult
enough anyway… you’re already sore, you’re growing
and strange things… and wonderful things too,
but it’s a funny period. And you go mad for a few years. All boys go insane for a few years
and then come back again. Matthew: School work is harder
for me, easier for them. When you’re always ticking and doing stuff. It’s hard to focus. Like when you’re doing a math equation… you do a tic, and then you lose it. He got into lots of issues and trouble
at West Melton School. He was bullied a lot and would just
sit in the playground by himself. Or sit in the classroom, and
he had no friends. I’d get a phone call at least two
or three times a week at work… “Come and pick him up,” or
“He’s been in a fight.” It’s really sad to watch.
It’s horrible. And the tics, he’s quite good now… he’s actually very good at the moment. But some of the tics were horrible… and they change, every month
there’s something different. He has really bad nightmares. He gets up, screaming and running
through the house. We’ve found him out in the backyard
in his underwear. He just gets out of the house. So we have to barricade the doors
and put mattresses up… and bolt all the doors at night. We’ll stand this mattress here,
so he can’t go through the glass. This mattress here then slides across here. And that goes across there. You’ve got to try and stop him
from getting out… but you’ve got to make it so
he’s not going to hurt himself. Because he runs really fast
when he is out of bed. He just runs and he’s screaming and
he doesn’t know where he’s going. F…! Hers! Robyn: They get deemed to be naughty… because they’re disruptive in the classroom. They’re deemed to have learning disabilities… because they can’t complete their
work as fast as their peers. And a lot of them do get tested and
they’re above average intelligence. A lot of parents I’ve talked to
homeschool their children. Their teachers don’t understand them… the kids don’t understand them. The children get so distraught at
disrupting those peers. They’re very hyper sensitive… and they feel other people’s
feelings towards them. And they don’t want to distract people… they don’t want any undue attention
or pressure on them. Today we recognise Tourette’s is a
neurodevelopmental disorder. Neurotransmitters regulate
messages through the… basal ganglia – shown here in
fetching lime green. The messages are sent through
the prefrontal cortex… shown here in cheerful chunder yellow. But when they pass through the filaments… shown here is this soothing sky blue… the messages get screwed up… thanks to susceptibility genes. So, basically the Syndrome
was caused by… faulty dopamine regulation at critical
points in the brain circuitry. Or in plain English, my wiring is crap
and my filtering are f…..! Tourette’s, f…, Tourette’s is a
neurological, f… disorder… that I have no control over. It’s a neurological disorder
where there’s… a part in the middle part of your brain… that’s not wired properly or
its sending signals wrong… and so its flashing off all
these impulses… and it’s not filtering out them. So, like a normal person will be
walking down the road… and they might see somebody
who looks really awful… their brain will saying,
“No just keep walking.” My brain might say, “Yell out fatty.” And it will be like I can’t not do it. It’s not necessarily an abuse
towards people. It could just be that I want noodles. So, I’m going to be walking around
the supermarket screaming, “Noodles!” It’s called, clinically, the premonitory urge.
The word ‘premonition.’ People don’t use the word ‘premonitory’
very often as an adjective. But to have a ‘premonition,’ a sense
that something’s going to come. So in clinical analysis of this condition,
it’s called a premonitory urge… where you think, ‘Oh god
here it comes I’m going to twitch.’ I have like a build up of energy
at the back of my shoulders or neck… I can feel this urge coming.
It’s not all the time. It’s just some of the time. So I’ll be able to stop and put
something down, or move back. It’s only a couple of seconds
before it happens… so it’s not like I’ve got big warnings. But yeah it’s like this build-up
thing behind you. High school, the 4th Form… It was there that I met my nemesis,
let’s call him Gavin. “Hey Barrett, come here!” “Hey Barrett, why do you keep doing this?” “Hey what a freak!” “Are you mental?” “Queer!” “Oh he’s going to cry.” “Oh boo hoo.” I had always been an easy
target for bullies… but I was beginning to learn that… acquiescence confuses the hell
out of stupid people. “You must be a mental!” “That’s right Gavin I must be mental.” “Yeah well you must be a spastic!” “That’s right Gavin I must be a spasy,”
couldn’t have said it better myself.” “Yeah well, yeah well. Are you
giving me cheek?!” “Moi? Le cheek?!”
(Speaks French) “Huh? Freak!” There was always that one, yeah. He use to pick on me a lot
and he was annoying. At school he would come along
and hit me in the arm. Ah, f…!, I love playing with
my friends Amanda, Hannah… and Claudia and Alice, if they would
let me play sometimes (laughs). Director: What sometimes happens? F…! sometimes f…! they
want to play by themselves. F…! and yeah. At primary school it was really hard
because I had no one to turn to. We moved schools lots and it
was really, really hard. And it took me until I was about 15… and I went, “Flag this! I’m not going to
be like everybody else.” “I’m not going to try and fit in.” And that’s pretty much when the
picking-on stopped. I gave up trying to fit in.
I embraced who I was. And people went, “Okay, hello.” And suddenly I had all these people
I didn’t know saying, “Hello” to me. I was so odd. I was into music and theatre. And I twitched. I mean, what
chance did I have? (Laughs). I’d always known where my future lay,
but it was customary… to have a consultation with the
school’s careers adviser. So, “Come in Paul, sit down. ” “So, what areas do you think you
might be interested in then?” “Oh, I’m going to be an actor.” “Ah, ah, yes very amusing.
No I meant as a job.” “I’m going to act. I want to act professionally.” “Have you thought about maybe being
a plumber or an electrician?” “Plumber or electrician? Oh, ah, no, I
can’t say I’ve considered those options.” I tried to give his suggestions some
serious consideration. Mmm, plumber, plumber, plumber… Electrician, trician, trician… I’m on a building site. I’m wearing an
unzipped blue boiler suit. I approach a fuse box, suddenly I feel
this overpowering urge… to stick this screwdriver into the socket. Oh, it’s so bad I can taste it! No, yes, no, yes, bzzz zzz argh!!! “Sorry sir, I really think perhaps
in my future career… I should be kept away from live wires.” (People making lots of noise) “Now ain’t nobody going to start
nothing, this here’s a party.” “Andrew, sing!” “Dum didi dum dum” “The farmer and the cow they
should be friends.” Group: “Oh the farmer and the cow
they should be friends.” “One man likes to push a plow,” “the other likes to chase a cow.” “But that’s no reason why they
can’t be friends.” Paul: There was a very early instinct
I had to perform and to entertain. So, it was never a choice and it
was always a sense of vocation… that this is what I was going to do. Thanks everyone, good work. I’m hoping to become a midwife. I’ve got to go back and redo
my Pre-Health at Polytech… because it’s been too long since that. I’ve spoken to a couple of ladies at one
of my friend’s antenatal classes… and I said about swearing at them
while telling them to push… and they said, “Nah by that stage we’d
know about it and it would be funny.” So I think it depends on
the people you get. Obviously there’ll be people
that do not want… somebody that’s going to be
ticing and saying, “Boogers.” Or “Shove it back in,” once the baby’s born. But that’s just the way it goes. And they would say, “Look you’re
not going to be for us.” And you’d get other people who are
really relaxed and chilled out… and could handle somebody going, “Whoo!” I want to be f…! be a kindergarten
teacher when I grow up… because I f…! love children. I’m actually not that sure yet.
I’m still thinking. Wellington, 1980, I’m 23 years old… and I get offered my first professional gig. Now, circuit theatre was a tiny space,
only seated a hundred people. So, the audience was very, very close. Never mind, I’m on. “Oh no this is a new one.” I get obsessed with popping
and flaring my eyes. “Oh s…! stop it, stop it!” “Oh god I feel like a cheap model.” Anyway at the after show drinkies… this quite well known film director
comes up to me and says.. “Well, interesting new talent on the scene,
yeah good performance up there… and I love that little flaring thing you
did with the eyes, nice character touch.” Of course, I was absolutely horror struck. I’d somehow convinced myself that
maybe the couldn’t see it. But the audience is only that far away
and of course they could see it! But it didn’t stop me and it didn’t
stop people casting me. So here I am. Group: Singing Paul: Singing My granddad once told me that
I should go and get an operation. And I was like, “No, no, no.” He said, “Yes there are operations
out there that can fix you.” And I’m like, “No, no, no.” In the end I turned around and said… “I don’t need to be fixed there’s
nothing wrong with me.” And I think he told me I needed a
lobotomy, at that stage. It was really funny at the time. But it’s like I don’t want it
and I don’t need it. It’s not stopping me from living.
There’s no point in changing it. So, that’s how I feel about it. F…! it was, f…! fine for me
but f….! But f…! But not for my mum and dad. F…! they were like, f…! “Stop
that Analise, stop that.” And, f…!, they were getting
really annoyed at me. And, f…!, and, f…, I’m like,
“No I can’t stop, mum.” “I’m so embarrassed can’t you stop?” Oh, alright then, I was having such fun too! No!!! (laughs). As I say in the play, “Help me!!!”
‘Just help me!!” Somebody said to me recently, helpfully,… “Well, it’s not as if they knew
what it was in the 70s,” I said, “It was diagnosed in the 1880s
by Gilles de la Tourette!” F…! f…! f…! I have a
pulling the finger tic. Director: I could imagine that would be
quite annoying for you, eh? Ah yeah. Analise had always displayed
traits of ADHD and OCD. And then after the earthquake,
she started cartwheeling. And she couldn’t stop cartwheeling
and she’d cartwheel everywhere. And we’d say, “Analise you can’t
do that this is a shopping mall.” “Stop cartwheeling,” and
telling her off, “Stop that.” But she just couldn’t stop. And not long after that she
started vocalizations. Noises at the beginning, just
really annoying noises. And then she begun stuttering. And so, one day I just couldn’t
take the noise anymore… and rang up the Child Mental Health Services. And said, “I can’t do this anymore!” So, we went there and had about six
months of her being observed And being put on medication for ADHD. Then one day out of the blue, “Oh we
think Analise has Tourette’s syndrome.” We don’t treat her any differently.
If we want to go out we go out. Someone once said to me, “How
can you let her go out like that?” “Why don’t you just stay at home?” I thought, well I’m not going to
wrap her up in cotton wool. She needs to be part of society… and society needs to learn to
accept her for who she is. And all those people who make
comments and think it’s funny… don’t laugh because unless you know
us you shouldn’t laugh at us. I’m happy for my friends to
have a good laugh with me. Because I know them and
they know what it’s about. But people that don’t, and that sit
there and make comments… or judge you or judge the kids that have
it that can’t help it. Just to ignore it and yeah. People like me can’t help it though. We can’t help it. So f…! don’t get angry if
we pull the finger at you. Just be like, “Oh, (f…!) that’s okay
I know you have Tourette’s.” You don’t necessarily want people’s
overt sympathy. But you just want to be treated
as normal, I suppose. Because you are in every
other respect. You’re still normal. You’ve just got
this funny little thing you can’t control. Sings: If you meet a guy who was restless,
obsessive but witty… If you meet a guy who is fired up,
impulsive, compulsive… yet pretty damn smart…
but he just can’t keep still… Just won’t switch off… Don’t be fooled by his antics… Don’t conclude he’s an ass… Don’t send him off to the back
of the class… That guy you just met…
just let him be… Because that guy you just met…
That guy you don’t get… Well he might be me.

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