My name is Joanna Oxford

My name is Joanna Oxford

and I was diagnosed with Tourette's
syndrome about four years ago.

Tourette's, to me, is...

It's a feeling that you get

that you need to perform the tic.

It's a kind of feeling that builds up,

especially if you're trying
to suppress it or reduce it

if you're out in public or anywhere,

and suppressing that
just builds up so much tension.

So when you get home you feel more
relaxed and you can release them

and it just feels
kind of overwhelming,...

this urge to perform the tic.

And once you've done it,
you kind of feel relief.

I suppose it's... I lot of people
liken it to... like holding your breath.

You can do it for so long but
you can't do it forever and, you know,

obviously you need to do it
and release it at some point.

The tics I have vary a lot.

I have a lot of vocal tics kind of...
(gulps) swallowing kind of noises.

And facial tics, the winking

and the neck tics sometimes.

And also I have a lot of hand,
fist-clenching tics, which I do a lot,

and I've actually got calluses
in the palms of my hands

from doing that so often.

I've always had tics.

But they didn't increase
until I was in my 30s,

after having children.

It wasn't until my eldest son
was about five,

he started displaying a few tics.

They weren't the same as mine
but I could, you know...

I knew that they were tics
and he couldn't help doing them.

And then I started off
by researching on the internet

why people have twitches. I didn't
even know they were called tics.

And it just came up with a lot of
articles related to Tourette's syndrome.

And I read them all and I thought,

"No, this can't be it.
Tourette's syndrome is really awful."

Because of the things I'd seen in the
media, people shouting and swearing,

I thought, "No, I can't have Tourette's.
Kalin can't have it."

"It's just... too awful."

I went to see my GP and said,
"I have all these tics."

"I've had them all my life
but they're getting worse

and I've noticed them in my son
as well

and I've been doing a lot of reading
about Tourette's,

and I think I might have Tourette's."

And she just went,
"Oh, it's probably just stress."

But she referred me
to the neurologist anyway.

I went in with a lot of information,

a lot of history about my tics,

how long I'd had them,
about family history.

There's autism and things in my family,

which is related, sometimes,
to Tourette's.

I was in his office
for about five minutes and he said,

"You're right. You've got Tourette's
syndrome." So that was quite a relief.

There are quite a lot of medications
available to reduce tics,

but they're not designed
for Tourette's syndrome,

so they have some
quite nasty side effects. (gulps)

When I was recently diagnosed,
I wanted to try something

just to see if anything could help,

and my doctor put me on clonidine,
which is apparently

often one of the first medications
that people try

because it has the least side effects
and it's not one of the nasty ones.

But the side effects were quite bad.

I had trouble getting to sleep
and really bad nightmares and...

kind of dry mouth and things
and feeling dizzy.

It's one of these... I think it's like a
blood-pressure medicine or something

so if I got up too quickly
I'd feel dizzy and...

Yeah. I think I was on that
for about three months

and decided to just taper off

and didn't bother taking anything else.

I don't think I have severe Tourette's.

I don't think
it really warrants medication.

I think awareness really is needed
more than medication.

Because as long as people accept you,

and it's not causing you
too much harm or pain,

then medication is not really needed.

I did belong to a support group
when I lived in Salisbury

and that was really helpful.

Most of the... (gulps)

the people in the support group were
adults who had children with Tourette's.

But there was one other woman
who had Tourette's as well, so...

Yes, meeting other people
with Tourette's, I think,

has helped me enormously.