His constant tics cause his body to violently jerk, twist and contort uncontrollably. We see how this impacts Trevor’s home and college life. No treatment has ever worked to stop his Tourette’s, apart from a brief respite when he plays his guitar and piano. But there is hope with a new experimental brain surgery.
My tic started out with the hand movements
and little eye movements, you, you can see.
First it was, kind of, nothing, but then they started progressing.
That’s, kind of, the first thing that’s on my mind every day.
Cos it’s the first thing I…
..sit here and do in the morning, when I wake up.
Just become, like, the main part of my life, I guess.
Tourette’s presents a lot of challenges,
but I try to overcome them as they come along.
Tourette’s is hard.
It takes a toll on you and there’s a lot of negative things
that are associated with Tourette’s.
One thing that tics make a lot harder is walking.
My, my knee or leg tic, kind of, really takes a beating
on my knee, at times.
And it just, like, makes it…makes walking hard.
I’m a freshman in college.
I go to North Iowa Area Community College, here in Mason City, Iowa.
I’m hoping to become an engineer.
I’m thinking mechanical.
I’ve been going to school for about two and half months.
Trevor has severe debilitating Tourette’s syndrome.
Tourette’s can, can be very mild or it can be very severe.
Every single doctor we have seen says that, “He has the worse case
“that we have ever seen.”
I myself have Tourette’s, I recognised what was happening.
With my case of Tourette’s it was extremely mild.
As I got into my later teens, it started to go away.
With Trevor, as he got into his teens, his started to get worse.
A lot of people steer clear of me because of my tics.
They see it and I think it’s not normal.
I will say I have not had very many friends in my life.
..I was the most bullied.
The bullying, it’s, actually, it’s evolved over the years, really.
In the beginning, a lot of staring.
And then, when you put him in school, the bullying and the teasing
started to get a little more sophisticated.
Hit us pretty hard, because we realised what the rest
of the world saw.
There’s been times where I’ve got really frustrated with the tics.
This is very tiring, because I can’t stop moving.
Cos it’s always, this takes a big chunk…
..of time and energy just trying…just having the condition.
I think it’s frustrating to see people staring at him and you’ll see
people look at him and then, sort of, talk to their friends
and you know they’re talking about him.
And I think it’s because people don’t like what they don’t understand.
They’re very judgmental, for sure…and that’s hard to watch.
We’ve developed a look for when people stare. Yeah.
We never say anything, but we give them a look. We give them the death stare, yeah.
As Trevor got older, we realised he wasn’t going to get better.
I had to make some decisions around what kind of life Trevor
was going to have. What if the tics never got better?
He had to live a life like this.
We started making him cook and clean
and we don’t treat him any different than any other teenager.
I started playing guitar at around 15ish.
Cos I realised playing music, kind of, gave me some relief,
in having the tics, essentially, stop in a way.
Music, kind of, provided some relief from the tics. When I…
..when I played, the tics would stop
and, essentially, just go away, as I was playing.
Which seemed like a miracle at the time.
When he plays music, when he gets into a groove, um,
it’s like his brain is distracted and the tics go away.
It’s a lot of joint pain, he gets neck and back pain.
We said, “Well, let’s give some medication a try.”
He had to try a lot of different medications.
They all had side effects, nothing was working.
Eventually, we, we knew that there was nothing left.
So, that’s when he got approved for deep brain stimulation.
We stopped the medications.
As any parent, I think, when you’re talking about brain surgery,
it’s pretty terrifying.
I think it’s a little, I wouldn’t say scary,
but it is interesting having something put into your brain.
I think the benefits will, I’m thinking they’re going to greatly
outweigh the risks.
But I guess I won’t really know until we do it and try it.
I have really just one option left.
Tried to appeal it, we went through every avenue we could,
with no, uh, with no luck.
I think it’s been frustrating to watch him go through that.
Yeah, it’s been really difficult, you know, seeing him go through
all the different medications and nothing really helping, at all.
It’s hard to come up with that kind of money and…
..for a surgery.
It’s been really stressful and tiring trying to…
..get that going.
# The sun shines
# Down on me
# Telling me… #
We have been working towards this for the last three years.
Hoping that they’re able to reduce them quite a bit, so I can start
living a normal life.
It’s been rough with my tics for all these years.
# The sun shines
# Down on me
# Just waiting… #
So, the next steps from today…
..is to wait, wait a week.
Because we want to have everything get used to the voltage.
From then or there I…
..I can use my remote to control the device
and slowly up the voltage, slowly over a period.
Over the weeks, until, eventually, get to the point
where I think that it’s good.
And then we go from there.
I’ve noticed the tics have been reduced a little bit.
It gives me a lot of hope. So, yeah, we can just see.
We got the right spot.
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