Definition of FA - Friedreich's Ataxia

A FA buddy of mine sent me a message on Face book and said try to write an article about a simple definition of FA - Friedreich's Ataxia. 

Like most people of my age I turned to the internet and I Goggled it.

Here’s what came up

 Friedreich's Ataxia

Web definitions

Sclerosis of the posterior and lateral columns of the spinal cord; characterized by muscular weakness and abnormal gait; occurs in children

Yes that is a correct definition of what FA - Friedreich's Ataxia is.

Now I’m going to take my shot at it.

My definition of FA - Friedreich's Ataxia is RARE.

The reason I used the word RARE is because no one knows about it, unless it is happen to you or you see the right people who know about it. 

And when I say no one knows I don’t mean random people on the streets, I mean Doctors, Nurses and Surgeons and many more, those types of people who you think would know a little about it. I have now been living with FA for 11years, and still all kinds of people asking me ‘What is Friedreich's Ataxia’.

My definition of Friedreich's Ataxia is RARE, because no one knows about it

I am trying to make a change to that, with this very blog I Don't Wanna Stop till the aliens in the universe know about Friedreich's Ataxia.

Jay & Silent Bob’s tickets & a day of Thank You's

Today got off to a great start

I booked tickets for Jay & Silent Bob’s Hollywood Babble-On in London, it’s not till the 1^st of July, but I am really excited I am a big Kevin Smith fan love all his films and just can’t wait for this day. Going with my 2 friends called Chris, it’s going to be a super fun day in London town.

And then the postman came

I received a nice surprise in the post a thank you card from the students back from the OT’s occupational therapists talk we did on the 4^th of March. 

(http://jdscrim.blogspot.co.uk/2014/03/march-4th-big-talk.html)

All the students signed it and put messages of thanks, and it also included a poem. Kirsty the university lecturer set the students a creative task of writing something about occupational therapy and one of the groups decided to use me and my story as inspiration.  

I will now share the poem

Our Poem

I’ve always felt fine,

But then there came a time,

When I sat in a chair

And received that ‘blank stare’.

My Mum said I had no co-ordination,

Yet my brother and sister, they ran for then nation.

So this lead me to him,

Sat behind his desk looking grim.

He says t me ‘Son, you’re pretty much done.

By the time you’re 18, you’ll be in a chair,

Now here’s a brochure, off you pop, let’s see how you fair. ‘

So I went from feeling just fine,

To this life sentence of mine.

I painted a smile on for my Mum,

But inside, I knew we were both glum

Then in came Pete,

With his fancy toilet seat.

We had loads of fun,

But he still got the job done.

Time was never a problem for Pete,

He spent ages on my smurf feet.

Pete called me the Evil Knievel of transfers,

Instead, they should’ve sent me to the ballet school of dancers.

Pete accepted me, tattoos and all,

And picked me up each time I had a fall.

He made me feel like I had self-worth,

And justified my reason here on planet earth.

Through Pete’s care and support,

I can teach others what he taught:

That despite my FA,

I can still live to the max every day.

Lucy P,Rye,Camilla,Sheryl,Esther 

What a wonderful poem, my eyes filled up with tears as I read it. Thank you to all the of the students for the card and thank you for the poem it really touched me.

To those who know me and know of my story, you may get and understand the poem. for those who don’t here is my story 

(http://jdscrim.blogspot.co.uk/2013/05/my-story.html)

Thank you

I’d like to just say a massive thank you to everybody, my blog page views is at 3,111, so thank you to everybody that reads and share’s it, thank you all so much.

Justin's Evening News 2

Today was a good day

I got my mum to drop me off at Tower Park, so I could go and see The Grand Budapest Hotel.

Ever since coming out of Hospital, and because I have had some falls of late, my mum and my older brother watch me like a hawk. Spending the last few days telling them I will be fine today came and my mum dropped me off and then left.

FREEDOM 

I rolled into the cinema and got my ticket for one (Now I must say I do love people, but ever since I was a kid I just love being by my own, it’s just the way I am) so yeah got my ticket to The Grand Budapest Hotel, and the guy at the desk goes “do you want me to open the screen door for you – my reply no it’s okay I’ll be fine. I had a little wonder round and then headed to my screen, then a lady checked my ticket, and then went “I’ll come grab the door for you, I was like I’m okay I’ve got it, and then she was like “are you sure you don’t want me to hover just in case, I was think no thank you I’ll be fine.

The Grand Budapest Hotel

A brilliantly entertaining fantasy outing, The Grand Budapest Hotel is the latest from Wes Anderson, and what great fun it is. This was my first Wes Anderson film, but if any other of his films are like this then I think I may like them too as I really enjoyed this. 

I found it funny, 4 other people were in the cinema, and I don’t think any of them laughed. It’s well written and the cast is brilliant.

After the film I hopped on a bus and went to Poole for the rest of the day (I didn’t tell anyone but this was my plan all along, I phoned my mum and told her when I was on the bus)

I know I am naughty but I just wanted a day by myself, like I used to the good old days. I didn’t do much in Poole just looked around a few shops, brought a film Man of Steel on Blu-Ray

.

It just felt so good to be out by myself, just me, my wheelchair (Betty) and my IPod.

I knew if I told anyone before they would have said no and stopped it, so that’s why I left it to the last minute, to say anything because then they just had to deal with it. 

On the bus on the way home, on my iPod came Bob Dylan – Like a Rolling Stone 

How does it feel
How does it feel
To be on your own

It was wonderful and great to have spent the day on my own and only relying on myself. :-)