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