"It's just the hand you've been dealt"

Hi,

On a regular basis we will be publishing extracts from Del’s Story via this blog. This is to raise awareness and publicity for the book before it is published.

Please let others know about this blog.

This first extract is from the opening chapter of Del’s Story. In it Del describes how a doctor told him the terrible news that he had the terminal illness Motor Neurone Disease.

Jerry.

“It’s just the hand you’ve been dealt.”

“It was on a cold winter’s evening after a painfully long day of waiting that I finally received the shattering news that me, my girlfriend Emma, my family and friends had all dreaded.

Good news would have been a trapped nerve or inflammation of the nerves, bad news would be a brain tumour and terrible news would be that I had MND.

At around 5:45 pm I was sitting in the four person ward watching TV when Dr Kidd and two of his assistants came in, drew the curtains and changed my life forever.

Dr Kidd was calm and sat down on my bed. Then he simply said: “You have Motor Neurone Disease, it’s a terminal illness.”

The words made my head spin. He carried on talking but I was incapable of taking it what he said. I remember the younger of his assistants, putting her arm around me and having tears in her eyes.

My first question was ‘well how long do I have?” Dr Kidd said: “Everyone reacts differently Del. 50 per cent of people die within 18 months of diagnosis. The other 50 per cent live between 2 -5 years.” I persisted “But what about me, what’s my life expectancy? How long do I have?”
Dr Kidd said: “You are young and fit, hopefully four years.”

I then asked why. What caused this? Have I done something wrong? I couldn’t believe it.
Just ten months before I had run the London Marathon to raise money for MacMillan Cancer Relief now I’m being told I’m dying. I used to go to the gym five times a week last year now this. To anyone who didn’t know what was going on I looked well.

In 2006 I went on a sponsored diet again to raise funds for MacMillan because I’d ballooned to 18 ½ stone and was heading for a heart attack. I managed to shed four and a half stone in less than five months through a strict diet and rigorous, some said insane, exercise plan.

I asked Dr Kidd was my disease caused by me doing too much training or dieting?

He replied: “It’s nothing you have done, we really don’t know what’s caused it. It’s simply the luck of the draw. It’s just the hand you’ve been dealt.” When he said that I thought of my late dad, Eric, who was a keen card player. I imagined him saying something like “what a bad hand that is son.”

The older assistant then asked if I wanted them to call my mum or Emma and tell them.

I said no, I’d do it. The thought of telling them the terrible news was what really got me upset. The older assistant said that we could have a meeting tomorrow with her where we could ask any questions, find out more about my illness and learn about the help available to me.

The doctors left and I was alone with a whirlwind of thoughts, feelings and fears.”

Another extract will follow soon.

Thanks for reading,
Del

Introduction to Del's Story

On 25 February 2008 my close friend Del Deanus was diagnosed with the terminal illness Motor Neurone Disease aged just 34 years-old.

Since that devastating day Del has dealt with the cruel hand fate has given him with dignity, humour and inspirational courage.

Exactly a year after the diagnosis Del and I got together and began writing a book about his life, his football career and his experiences with MND.
We will also be exploring the possibility of a link between the disease and people who play sport at a high standard.

This blog will give you an opportunity to follow the progress of Del's Story.

To find out more about the disease please visit:http://www.mndassociation.orgThank you.

Hi,

This bloghas been set up to raise awareness of the devastating terminal illness Motor Neurone Disease (MND).

Del and I are working together to write a book about his life living with MND and how he and his wife Emma are coping with the disease.

Del wants his story to raise awareness of the disease and to raise funds for the MND Association.

Please feel free to let your friends know about this blog.We will be posting regular updates on how the book is progressing.Here is a little background information on Del.

Del was an outstanding youth footballer who represented England schoolboys playing alongside Ryan Giggs and Nicky Barmby.He spent four years as a youth and apprentice player at Tottenham Hotspur during the era of Paul Gascoigne, Gary Lineker and Terry Venables.

The book contains some fantastic inside stories about life at the club during this exciting time.Injury cut short Del's playing career but he went on to have very successful spells in coaching and management with Southall, Northwood, Edgware Town and is currently co-manager of Welwyn Garden City FC.

Since his diagnosis Del has got married to his long term girlfriend Emma. He has travelled across America and is still working 14 months after his illness was confirmed.We began writing this book on February 25 2009, a year after Del's diagnosis. Our goal is to have it completed by 25 August 2009.This date will be significant because it will mark 18 months since Del's initial diagnosis.

The life expectancy of people with the disease is between two to five years with 50 per cent of sufferers dying within 18 months.Far from being a book about a young man dying our aim is to make it the story of someone whose fighting spirit will inspire others to make the most of life.

Thanks for reading and keep an eye out for updates.