I Have the Most Extreme Case of Tourette’s | Living Differently

I Have the Most Extreme Case of Tourette’s | Living Differently

December 5, 2019 0 By Stanley Isaacs


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. School… ..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.