Hello i am Justin Scrimaglia and I have Friedreich's Ataxia,
Welcome to my blog of all things Justin
and Friedreich's Ataxia.
Helping to raise awareness for FA
My story in my own words… http://jdscrim.blogspot.co.uk/2013/05/my-story.html
What is Friedreich's ataxia?
http://jdscrim.blogspot.co.uk/2013/02/what-is-friedreichs-ataxia.html
just a quick one as i wont have time to post it tomorrow,
So come this time tomorrow i'll be back at Download for the 4th time...
And boy i am Excited for it
(Lineup is strong this year)
I bought myself a new scooter to help me get around easier for the festival, last year was hard work in my wheelchair.
Fingers crossed the new festival wheels work a treat, and all the lovely lady's ask me for lifts ;-) haha
I will report back after the weekend of mayhem with some stories and pictures, anya i have seen the weather reports and i am prepared come rain snow or sun i don't care i am there to have a bloody good time and Rock Out with my .... out haha and that's what i intend on doing, so if you like me and heading to Download for the weekend stay safe and enjoy yourself and for the rest of you enjoy weekend see you Monday \m/
So after some confusion and a mix up on the time, I got 3rd
session done on my chest. We still have one little bit left to go but I am
Super Happy with it, I already LOVE IT
Here's some advice if you're thinking of getting a tattoo
and a chest one, get it done first I won’t lie it hurts like a bitch.
The reason
With my Friedreich's Ataxia I
have all the heart problems that comes with it, so I got this tattoo of a heart
in a coffin with the words “STILL BEATING” as a metaphor to say as long as my
heart is still beating... I’m going to still be here kicking (FA) ass... and we
just added in the bone wings because it looks cool.
I am still very sore but hey the pain is worth it because my
chest is going to look great.
I have to
thank the one and only Emma Garrard for this tattoo
After staring in a busy high street studio in 2006 emma has been lucky
enough to meet and work with some of the best artist in the industry and
received a nomination for best UK female artist at tattoo jam 2012.
Emma believes there is so much to offer with the art of tattooing and works
passionately with her clients to give the best she can.
Every person is unique and requires individual approach.
Emma is taking on bookings at the moment so if you want a tattoo check
her out and do it right now :-)
First off let me just say sorry because I haven’t done a
blog post in a while, I have been pretty busy sorting things out for Download
Festival and other stuff.
But I am back now...
Today I was back doing my thing
Nursing Simulation part 3
This was the last one and It went so smooth again, I had 2 lovely
female nurses which I find it a lot easier to work with 2 students rather than
3 (The other times I was working with 3 students)
This time round I only had to do 1 simulation rather than 2
like the time before so that was Ace, so we kicked off with the simulation and
as soon as words Friedreich's Ataxia
came out of my mouth I could see it on them, they were like What The Bloody
Hell. Like most people never heard of it before today, so I gave them some of a
card each with the link to my blog and gave them the quick rundown of what FA
is and job done 2 more people in this world now know about FA.
Running through the simulation of handover was all the fun
as always, we had a giggle and it just felt so natural like we were in a real
hospital.
I even got told by the 2 lovely female nurses that they find
me intriguing... so #Winning
Speaking with one of the academic staff members afterwards,
she was like your seem to work better with girls... I was damn straight it’s
all in the face haha...
It was a very productive and positive day, so a big thank
you goes out to the 2 wonderful students I had and keep up the good work one
day you will both make fantastic nurses.
And in other great news I’m getting tattooed in the morning
Yes! Super Excited for that
The other day I heard the song by Simple Plan - Welcome to
my Life
in those first few early yes of dealing with FA this song said pretty
much how I was feeling. I continued to feel this way for a few years and then
one day it all changed.
(To save myself some time here is a link to my story it explains
it all)
(Look at me here... not very happy and i am pretty
I may have been listening to Simple Plan)
It just takes Time
My life has got a lot better from skydiving, gigs/festival
to all the great work I’ve been doing with BU Carer & Service User Partnership thanks to them I got to do my
first ever solo talk.
Which I’ll be
honest I stink at compared to my team mates, but I try. This past Sunday we had
training and to be fair I probably played the best I ever have... I was
doing some good blocking,: passing from the inbound and I even managed to catch
the ball which led to my team scoring happy days so must be improving.
That is my key word
for today “Try”
And that is going
out to everybody, try something new, try something old just try...
2 things are
probably going to happen, 1. You get a huge sense of gratification or 2. You realise
it wasn’t for you and that’s okay because you still gave it a shot.
I’ll be straight up
and honest with you before the first wheelchair rugby tester session, I had all
the questions going around in my head what if I am not good enough? Thanks to
FA I have nothing to offer this game and so on so on.
You know what I just
thought screw it I’m just going to see what happens and I am very glad I gave
wheelchair rugby a shot turns out I like it and I have meet bunch of wonderful
people who I now class as family.
Okay so I still am
bad at a lot of it, but I just stick to what I am good at and that’s blocking
but the important reason here is to Try because life is too short.
Whether you have FA
like myself, wheelchair user or not, whatever your disability heck it doesn’t
matter even if you are ably bodied, get out there and try.
I guess what I am trying to say with Time and some Will you
can turn your life from Dark to Light, little Star Wars reference there.
So sorry I didn’t do a post yesterday I was too tired,
anyway I am here now not long got in from wheelchair rugby training which on a
scale of 1 to 10 wheelchair rugby training was a 11 = brutal i am going to be
sore come tomorrow, still lots of Fun had.
Anyway on with the show Friday night System of a Down
Wembley Arena
Was killer fucking amazing show
I and my best friend Chris caught the train up, which was choker
so for 2 stops we had to wait by the doors and one stinky ass toilet where it
smelled like someone had dropped their guts.
Made it to Waterloo and no one meet us with a ramp to get
me off the train even low I had told them where I was going from Bournemouth
and I had booked the ramps, I think they just forgot.
I just went backwards and Chris grabbed the back of my
chair and bob’s your uncle we did it, next we headed for the underground, and I
remembered from before I rolled up to a underground person and asked him to
radio through to see if the lift was working at Wembley Station, so after
waiting around like lemons for 10-15mins we found out the lift was working and
on we went.
When we got to
Wembley Arena we hit up a T.G.I Friday’s as I was starvin marvin, we had food
and then went and hit up starbucks and chilled until it was time to go in.
The gig was off the chain
So fucking good
The only downfall was they no support band and System of a
Down didn’t hit the stage till just before 9 so we were in there just killing
time at least I was sat down in my wheelchair I felt bad for the people by the
stage their legs must have been killing.
But when System of a Down hit the stage man it was systems
go...
SugarThe roof got blown off when
System of a Down played Chop Suey everyone was on their feet apart from me and
fellow wheelchair people, still having All the Fun
The gig was super heavy and I had
a blast, it was well worth waiting all those year to see them.
Click here to find out why System
of a Down are so special to me
Right i am off to relax and watch some more of Marvels Daredevil
p.s i forgot to add this in after the gig when we were on the tube heading back to Waterloo and the tube was rammed with people from the gig, anyway i lent forward and was playing with the front of my wheelchair and when i sat back up Chris goes what were you doing? and i reply like lightning and say playing with my nuts it was so quick for me and funny. This couple opposite us on the tube wanted to crack up laughing you could just see i on them. Chris and i done a high five just because it was such a funny moment and deserved it.
