Today I did my second ever talk, this
time in front of child health nursing students. Things started out tad
crazy as we got told it was 12 – 1, and it was actually 11 – 12 lack of
communication or a mix up somewhere.
We got things sorted out, and we did
our talk
Here is what I said
Hello my name is Justin Scrimaglia, and
this is my mum and full time carer Loren.
And I have Friedreich's Ataxia (FA for short) Just out of interest is
there anyone here that has heard of Friedreich's Ataxia? (There were about 30
students in there, and it was 0 again, none of them had heard of FA)
FA is a debilitating,
life-shortening, degenerative neuro-muscular disorder, and as things stand
there is No Cure.
I was
diagnosed with FA at the age of 15, and this is the story to how we got there.
I was born in Bournemouth and as a baby we
moved to Wales, the majority of my family were living
there. I knew from a young age that I was different to all the other kids, even
my older brother and younger sister.
For example of how different I was
So I had just started secondary school and my older brother
was a fantastic runner smashing records, and my younger sister who wasn’t even
at the school yet was a fantastic gymnast, and where we lived wasn’t a big
place so everybody knew everybody. So with me coming up the sports teachers
were like’ a brother and sister like that he’s the middle child he’s got big
shoes to fill’. And with me being very clumsy and very much uncoordinated I was
really bad at sports even though I tried my best. I remember this one time we
had to run cross country and like most running I would come in last and on the
route back to the sports gym we had to run up a bit of a hill, well I wasn’t
running I was walking up it, and at the top outside the gym stood were all 4 of
the sports teachers just staring at me and saying ‘well your nothing like your
brother or sister are you’. I just looked back and said I don’t want to be like
them I’m me, but it really hurt me that did, and as I was changing from my
sports clothes into my school uniform I even had a cry. I remember going to my
first parents evening with my mum and we sat down to the table with the P.E
Teacher, (the main sports teacher). We sat there and he started talking about
my brother but my mum stopped him and said ‘I’m not here to talk about his
brother I’m here to talk about Justin’ and then he just looked at me, and said
‘what can I say he tries’
And then moved back to Bournemouth when I was
a teenager
Just before we moved back, I guess
things were starting to get noticeable, as a few of the kids in my old school
in Wales had started to call me penguin because I waddled like a penguin when I
walked.
Nan and step Granddad moved back to Bournemouth about a year
before we did, and we had other family who lived down here, so it made sense
that we would return to where our family was.
I hadn’t
seen my Nan in over a year, and it was her that took my mum aside and said ‘you
need to take that boy to see a doctor, something’s not right with him’, and
that’s what we did.
We
started of f by just seeing normal GP and then getting referred to other higher
doctors, slowly making our way up the ladder. Along the way I had to undergo
many test, from a load of blood test, to countless reflex tests, and even an
MIR scan.
This one
doctor we saw at the Community Centre, in Moordown tried
to make out that I was putting it all on, and that I was tensing when he was
testing my reflexes.
He suggested that I should take up ballet dancing, to which my mum replied with
“and what should we get him a pink tutu”
Shortly
after we got the appointment to see the Neurologist
In the start we first saw, him and he’s team for an introduction, and
then we got a second appointment
and they thought I had Cerebral Palsy, but the Neurologist was not happy
with that and he looked at me that day, and said I promise you we will find out
what’s with you.
And then we got a 3rd appointment
September 11th 2002 I was
diagnosed with Friedreich's Ataxia, I had not long just turned 15.
I remember walking into that room, and the Neurologist was behind his desk, and there were other doctors in the room too who
were part of his team, so we got to know each other and then he began to talk,
and they said ‘we have the results back we now know what it is, you have
Friedreich's Ataxia’. I was like ‘wow what the bloody hell is this’, he then
started going into it with all the doctor terms and using academic language,
which I then I stopped him and said can you explain it in a way that I can
understand please, and he looked at me and said ‘I won’t lie to you but by the
time your 18 you’re going to be in a wheelchair’.
That news broke
my heart I began to cry I got up and walked out, in the car I was in bits
crying and sobbing, my mum was there giving the old ‘everything going to be okay’ speech, but I was having none of it.
As far as I felt my life had ended that day,
I counted to see
the Neurologist and he’s team once every 6 months, but I
held biggest grudge against the man not for telling me I had FA but for the way
he told me. Looking back on it now I guess he was just doing his job, and
I guess he thought I could handle the direct route but I wasn’t
like other 15 year old lads, I wasn’t mature enough or ready to have that kind
of truth bomb dropped on me at that age.
It took
about 13/14 months to get a full diagnosis.
FA all so brings other symptoms, like scoliosis and hypertrophic
cardiomyopathy. Which I have both (scoliosis is curving of the spine, I have 2
curves in my spine, top goes to the right and the bottom curves to the left)
and (hypertrophic cardiomyopathy is enlargement of the heart)
For scoliosis
the only why they can look at your spine, is back by x-ray and I use to have to
go to Southampton ever 3 – 6 months to have my spine looked at. One day when I
was there to get x-rayed, and at this time I was still kind of walking, barely
and very wobbly.
I remember getting called in and one of the x-ray people shouted at me
“they said if I don’t keep still, we are going to be here all day “to which I
replied I’m trying too.
As a child I went back and forth from different Hospitals, and seeing
many different doctors. I was having scans done on my chest, I forget the name
of machine but it’s the same as pregnancy scan machine. I had a few of them,
and this thing kept showing up on the scan that got them a bit worried, they
thought I had a hole in my heart.
I got booked in to Southampton to potentially have key hole surgery done
to close the hole, that was the plan any. They put me to sleep and put a camera
down my throat, turns out it wasn’t a hole, I have a flap, I’m human and little
bit fish like Aquaman.
It doesn’t cause me any problems, it has caused some problems when I have
been anaesthetised because they can’t control my heart rate, oh and I can’t go
scuba diving.
(I ended things with)
Any questions??? And i pluged my blog.
We got a little bit in there too from mums perspective, of a career. See my trouble is I turn it into the Justin
show (When I get talking I find it hard to stop, I need to learn to control myself)
and forget that they also want to hear mums side of things too. Today was a
little bit rushed though, because of the mix up with the times.
We got there in the end, and our talk went down good, well they laughed
at my funny parts, and we received some questions too. At the end we received a big round of applause,
which is always nice. They must have
liked it and found it helpful, unless they were just being nice.
I have only done two talks now,
but I get so nervous and big butterflies in my belly, and then when I start
talking and start receiving reactions from my audience, the more I start to
feel at ease and confident.
I like doing talks, and I love the feeling that i get, after i do a talk, I feel
all positive and warm inside like I have just helped people to learn something
new, by sharing my stories and experiences with them.
Yes I know technically that is what I have just done,
they way I look at it in those two talks I have tort 60+ people all about Friedreich's Ataxia, and I most definitely want to do more
talks I’ve got the bug for it now.
I Don't Wanna Stop till the aliens in the
universe know about Friedreich's Ataxia.
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