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Living With Cerebella Ataxia

Travis, Meningitis, Friendship and Reasons to be Grateful

Having slagged off Victim Lit in all its sickening guises over the years, here is my contribution…

 

My life changing treatment at the Royal London Hospital for Cerebella Ataxia, which I had to fight tooth and nail for, and only got through the direct intervention of health Secretary Alan Johnson worked like a dream.

 

I left my wheelchair behind in September, and didn’t look back.

 

Independence, being able to cook and do the housework, taking Conor out on my own… Like a pig in shit.

 

Although I knew I’d never lead a “normal” and full life again, at least I had a life and was determined to make the most of it.

 

Finally, just finally something had gone my way after, let’s face it a bloody bad trot of luck throughout my life, going back to 1987.

 

But it all had to be too good to be true…

 

My body can’t take anymore of the treatment and reacted with a sickening development, meningitis as the lining of my brain rejected the anti bodies that are meant to help me.

 

I was very ill and to cap it all, the nursing staff were just vile. There is so much I could say on this issue, it would take all day, but suffice to say when your body is racked with pain, you are vomiting bile, your head feels like it’s about to explode and you’ve waited FIVE HOURS to see a doctor (I am an in patient), to be told to “calm down” just defies any rational belief.

 

Even then it was a further hour before the nurse could be bothered to get the necessary drips up and running in an attempt to alleviate this chronic reaction.

 

The Prof. says there are alternatives, so no need to panic yet, but it’s a massive setback.

 

But, the initial cycles where the treatment did work have bought me time. Summat will turn up.

 

I have had terrible tragedy touch my life, and when I heard this song it made me cry a river, but then I made a list in my head of the people who’ve helped me and what a lucky bloke I really am.

 

And that’s not counting my wonderful wife and son.

 

I’m sure I missed people out. Sorry. But it goes to prove luck and good fortune have many guises, you just need to look in the right place. And the video helps put stuff into it’s real perspective….

 

Mairin Power, Donagh O’Shaughnessy, 
Tara Shaw, Nic Hoyle

Gavin Giovannoni, Mike Jones

 

Belinda Allen, Padraig Power

 

Ian Skitt, Simon Birch

 

Howard Goss, Lesley Flatt

 

Catherine Gallagher, Ann Marron

 

Eileen Cusack, Joan Murphy

 

Denis O’Shaughnessy, David Wall

 

Richard Robinson, Pete Crawford

 

Mark Murray, Andy Hodgson

 

James Murray, Andy Hill

 

Cara Jennison, Cathy Hunt

 

Michelle Scott, Mark Paterson

 

Steve Noakes, Claire Quigley

 

Gemma Applegarth, Julie Driver

 

Sarah Soane, Kieran Cusack

 

Maura Power, Joan Foley

 

Adrian Marron, Rosie Scott

 

Sarah Brownell, Louis Byron

 

James Walsh, Gordon Tait

 

Sue Atkinson, Chris Rees

 

Colm Power, Ian Mellor

 

Joe Murphy, Niall Cusack

 

Lucy Harrison, Nicky Cowie

 

Phil Barlow, Sharon Burton

 

Ray Rumkee, Stuart Flatt

 

Treasa O’ Shaughnessy, Neal Purvis

 

Tom Foley, Julia Jones
 
 Grainne de Paiore, Irwin Williams
 
 
 
 
    

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About dermotrathbone

Writer and co author "Through Red Lenses". Activist Unite the Union, Save Our NHS Hull. Fan of Yorkshire County Cricket Club, Hull FC, Munster and Ireland Rugby. Views are mine alone and may not reflect the organisations concerned.

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