Monday 21 September 2009

Living with MND



Hi everyone,



Thanks again for the ongoing support.

Below is an extract from a section of the book where I talk about the reality of living with Motor Neurone Disease.

I've tried to be as honest and open as possible.

Jerry and Tamsin are doing well on the proof reading and formatting side of the book and will have our first full checked version by next Monday.

Once that's done we will send it to the printers for a final proof copy and then place an order which will mean the book will be available to buy from October 23 (ish).

All profits will go towards Motor Neurone Disease Association.

The photo is me when I was bout 7-8.


Thanks again,

Del





April 24 2009

"It takes me 15 minutes to get out of bed. My mind is awake a long time before my body kicks into its limited gear. It’s incredible how much we take for granted in our daily lives.

You never know what you’ve lost till it has gone. In my situation that’s so damn true. How I would love to be able to simply splash cold water on my face on a hot day. I’d give anything to just feel comfortable popping round to the shops for a paper and then stop off for a pint. I’ve forgotten the last time I was able to finish a plate of food without Emma or someone else helping me.

I’m now eating a lot more bread simply because my hands can just about clumsily grip a sandwich. To tell the truth I absolutely hate being so dependent on others. If I come home from work and am thirsty I can’t just go to the fridge and grab a bottle of water, my hands and arms just won’t allow it. My drinks now have to come with the added extra of a straw.

How I’d love to be able to cook for Emma again. I used to love cooking, I found it relaxing and it was always guaranteed to take my mind off work, football or my debts.

At the moment I’ve lost a lot of confidence of being outside because of the difficulty I have in walking. I have noticed the dragging of my feet has gotten worse as I find it harder to lift my disobedient legs. The falls have shaken me and caused that crisis of confidence. I would be a lot safer and possibly more comfortable in a wheelchair.

Emma and I have discussed this option with some of my medical team. It was during one of these chats when Emma made a really good point. She said: “I think Del needs to stay on his feet for as much as he can because eventually we know he will not have a choice whether to use a wheelchair or not.”

Emma encourages me to go for at least one walk with her a week, normally around the little village where we live. I don’t really enjoy it because of the concentration needed and the fear of falling. But I do realise Emma’s doing it for my own good.

When I stumble inside the house we both just laugh. It’s the only way to deal with it.
I know life in a wheelchair awaits me but I’m doing all I bloody well can to delay that day as long as possible.

I don’t want people to read this and feel sorry for me I’m just telling it as it is. The reality of MND is a very, very bad one. Everything is a big effort at the moment but I’m hanging on in there. Giving into this disease is not an option."

Del

Friday 11 September 2009

Facebook Group

Hi,

Just a very quick note to let people know there is also a Facebook group - Del's Story. Click here to see it and please feel free to become a member.

Thanks

Del

Friday 4 September 2009

Publishing progress & a great start to the season



Hi All,

Thanks to all of you for your continued support and for your kind messages about us meeting our writing deadline.

Big thanks to Morts and Wilson for their help on a few things this week.

It's been a hectic 10 days but we have made real progress with the book as Del will explain below.

Cheers

Jerry


A message from Del

"Hello everyone. I'm really excited at the moment because we have made some major decisions about publishing the book and it looks like we will have copies printed by mid October. I really can't wait to see the finished product.

We've decided to self-publish which isn't as complicated as it sounds. We will be selling the book for £9.99 and all profits raised will be donated to the Motor Neurone Disease Association. We hope once the book is out there and more people get to see it a publisher might decide to take it on.

Emma and I are currently gathering photos to use in the book. These will include a pic of me and my first ever football team, Brentfield Primary School. It's a cracking pic because Jerry is also in it sitting behind me with his crazy council kid hair cut!!!

I'm also including some of my wedding day, the England school boy team pic featured in this blog (Can you spot me, Giggs and Barmby?), friends, family and a great shot of our Edgware Town FC treble winning squad.

Amazingly there's also a photo of the very first kiss Emma and I shared back in 2000. It was in a night club in Spain and my mate Wilson was on hand to capture the moment :)

The team I joint-manage has started the season really well. We've played six, won four, drawn one and lost the other. I'm thankful to the directors of Enfield Town and their supporters for giving Steve Newing and I the chance to manage this club which I'm sure are going places. I'm confident we'll do a good job.

What with the football and the preparation to launch the book I haven't hardly any time to dwell on my illness. When you are faced with death it really focuses how you spend your time. I want to get as much out of life as I can, while I can. I'm living up to my "making the most of now" motto.

I'm looking for some feedback on possible titles for the book. They are:

Del's Story - Making the most of now.

Del's Story - Win, lose or draw.

or Get Busy Living

Let me know what you think via the Facebook group Del's Story.

Well thanks for reading and I'll update the blog next week with how we are getting on.

Cheers"

Del