A message from Del.

“I’ll start off with a quick reminder to let you know how you can buy the book on line.

You can now buy it for £9.99 via the link below:
The book can also be downloaded for £5.99
http://www.lulu.com/content/paperback-book/memories-never-die/7772583

We have already sold about 150 books since we launched last Wednesday. For every book sold £4 goes towards the Motor Neurone Disease Association.

Thanks to everyone who has bought a copy so far. For those that have ordered by post we are sending out the orders on Monday as our bulk book delivery has just arrived. The response we are getting to the book is very positive and we have had a couple of good articles published in Welywn and north west London newspapers this week.

I recieved an email recently from a young woman that made all the effort and work Jerry and I have put into the book worthwhile. She had became aware of my blog the night before her Fiance went into hospital to find out if he had MND. She said the blog gave her and her partner strength and inspiration to face the unknown.

Sadly their fears were confirmed and he has been diagnosed with MND but they sound strong, positive people and are making the most of now. We wish them well.

Her email meant a lot to me because the main reason I started the book and blog was to help those recently diagnosed with MND.

At home Emma and I are really excited and are busily getting ready for the arrival of our baby which is due on Christmas Eve. Em’s last day at work was yesterday so hopefully she can relax a bit more in the run up to little Deanus’ birth. Our lives are being made easier at the moment by the help we receive from others.

My carer Rob (pictured with me) has been great. I mention him in the book. He’s with me every morning and helps me shave, shower, get dressed and makes me breakfast. He also goes through stretches with me, this is important because many of my muscles are wasting away and we are trying to keep them active for as long as possible.

Rob’s a fantastic lad but there’s no getting away from the fact that he looks like a younger version of one of the guys from Right Said Fred.

Our other helper is Jane who visits on Wednesdays and Thursdays. She takes a lot of pressure off of Emma by preparing meals and tidying up.

I’ve been off work for two months now while my employers work out what will happen to me. If I was to carry on working my van would need a few adjustsments to take into account my disability.

I’ve been keeping myself busy by going on the internet and trying to find out as much as possible about the sides my team Enfield Town are playing. It’s such a bonus for me to still be involved with the club and we are doing well following a blip. We’re now in a play-off position and Steve Newing and I are feeling optimistic.

Thanks for reading.”

You can contact Del directly on dandjpublications@live.co.uk

How to buy the book

Hi,

Just a brief reminder to let you know how you can buy the book.

You can now buy it for £9.99 via the link below:

The book can also be downloaded for £5.99

http://www.lulu.com/content/paperback-book/memories-never-die/7772583

To order a postal copy of Memories Never Die by Del Deanus please send a cheque made payable to Emma Luscombe for £12.99 (price includes postage and packaging) to 22 Lockleys Drive, Welwyn, Hertfordshire, AL6 9LU. All profits from the sale of this book will go to the Motor Neurone Disease Association. Please allow ten working days for delivery.

Any questions please email dandjpublications@live.co.uk

cheers

Del

Re-united with Ryan Giggs and the book is now avai

Hi all,

As ever thanks for the kind messages and supporting this blog.

On Monday we visited Manchester United's training ground to meet up with Ryan Giggs and Nicky Barmby who kindly agreed to help publicise the book.

You can now buy the book via the link below:

The book can also be downloaded for £5.99

http://www.lulu.com/content/paperback-book/memories-never-die/7772583

It was fantastic to meet up with Ryan and Nicky and my England schoolboy manager Dave Bushall who kindly gave us a tour of the amazing training facilities United have. I hope the photos we took will prove really helpful in promoting the book and raising awareness of MND.

I was interviewed for MUTV along with Ryan and Nicky and we will be uploading the video link within the next 24 hours.

A huge thanks must go to Richard and John Morton for organising the day. It's one I'll never forget and Ryan and Nicky are real credits to their profession.

Aside from ordering the book on the net you can order it by post: Here's how -

To order a copy of Memories Never Die by Del Deanus please send a cheque made payable to Emma Luscombe for £12.99 (price includes postage and packaging) to 22 Lockleys Drive, Welwyn, Hertfordshire, AL6 9LU. All profits from the sale of this book will go to the Motor Neurone Disease Association. Please allow ten working days for delivery.

As always thanks for reading and make the most of now.

cheers

Del

How to buy the book

Hi all,

Thanks for stopping by and having a look at the latest update. Also I'd like to say thanks for all the kind messages we recieved about our baby news.

We had a launch dinner on Saturday (October 24) for the limited edition of the book. We sold all 22 copies which were available and have taken orders for 100 more. We only ordered a limited number this time because we wanted people to give us feedback and help us with the proof reading process.

The evening went really well and both Emma and I had a great time and those that have have already read the book are very positive about it.

We will now be launching the finished version of the book on November 16.

Right a lot of people have been asking me how they can go about getting a copy of the book. Here goes.

Pre-order postal: To pre-order a copy of Memories Never Die by Del Deanus please send a cheque made payable to Emma Luscombe for £12.99 include postage and packaging to 22 Lockleys Drive, Welwyn, Hertfordshire, AL6 9LU. All profits from the sale of this book will go to the Motor Neurone Disease Association. Please allow ten working days for delivery.

Download: From Monday November 16, you will be able to download a PDF version of Memories Never Die for £4.99 from a website, further details to be announced early in November.

Via the internet: From Monday November 16, you will be able to buy a copy of Memories Never Die priced at £9.99 + P &P via a website, further details to be announced early in November.

Any questions email me at the address below

Thanks,

Del

PS Remember you can message Del directly at dandjpublications@live.co.uk

The best news of all.

A message from Del

Hi All,

As always I’d like to thank you for your support of this group and my blog. I’ve been lucky to have received so many messages of love and support. They really keep me going, especially as I’m unable to work at the moment and I’m waiting for the results of an assessment to see if I can carry on working.

It’s been a while since we updated the blog and lots of things have happened, so here goes.

We are having a limited edition book launch on Saturday evening (24th). It’s a small mainly family affair in Welywn where we will have dinner and sell the first 20 copies of the book. We’ve had a few teething problems getting them produced but we seem to be almost there.

We will be launching Memories Never Die to the wider world on Monday November 16th. There’s a possibility it will be made available before then by downloading it. I like the idea of downloading it because it will help people who have the same mobility problems I’m experiencing. I now find it impossible to turn the pages of a book so scrolling down on a PC screen is a lot easier.

We are also going to make the book available in a spiral bound format. A draft of the book was printed and bound in this way and I found it easier to turn the pages.

I’ve saved the best bit of news to last. It’s something we have kept a lid on for a good few months now. Emma is pregnant and we are expecting our first child on December 24. A wonderful Christmas present and we are both incredibly excited.

The news about baby Deanus gives the book an added importance. We have included a chapter in it where I write a letter to my child sharing some of my thoughts on life and my hopes and dreams for their future. It was a difficult but essential part of the book to work on. It’s the only time I’ve noticed Jerry go quiet through our eight months of working on Memories Never Die.

If you would like to join us for a few drinks after the dinner we will be in The White Horse in Welwyn from 9pm on Saturday.

Thanks,

Del.

Message from Jerry

Hi,

You can now send your messages of support directly to Del via dandjpublications@live.co.uk

Cheers

Jerry

Nearly There

Hello again,

As always thanks for your continued support I really appreciate it and it gives me strength to keep battling.

Well things are really falling into place with the book. We have made major progress this week. We have received the first versions of our proofing copies, are close to booking of a venue for the launch event and have a new name for the book.

As much as I liked the title Making the Most of Now I wasn’t 100 per cent sure of it. So I’ve decided on a new name for it……………MND – Memories Never Die.

There’s a brief explanation in the book about why I liked this title so much. We are also currently putting photos into the book and will be ordering a final proofing copy on Monday October 5.

Jerry’s just come off the phone from getting a foreword from Nicky Barmby. Nicky and I were great mates during my Tottenham Hotspur apprentice years. He’s a lovely bloke and what an amazing career he has had.

Also we can confirm the book will be on sale from October 26th and should be available on Amazon, Lulu Publishing and through mail order.

I’m excited and looking forward to seeing the final version of something that’s taken seven months of hard work to put together. I really hope people enjoy it, are possibly inspired by it and having read it understand a bit more about MND.

Thanks for reading,

Del

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

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

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

The finishing line

A message from Del


Hi all,

Thanks again for the continued support. Your encouragement really gives me strength to keep fighting this disease.

Today, August 25th 2009, is six months since we started the book and is also our deadline to have the first complete draft written.

The good news is we have managed to meet our deadline (hurray!!!!!), the not so good news is we still don't have a publisher (booooooo!!!!).

However we do have options.

A) We self publish. We print, distribute and market the book ourselves.
B) In an ideal world we find a publisher who does all of the above.
C) We publish using a website like Lulu.Com, at the moment this looks our best available option.

We have also decided to begin every chapter with a quote. These have been taken from famous people, ancient proverbs, Del's family and friends and the Shawshank Redemption.

Our wonderful proof reader Tamsin, is gamely wading through the drafts she has been sent. We are expecting some polishing up will be needed to the copy but are hoping to have a final manuscript ready in the near future.

Thanks for reading and we will update you soon.

Del

Naming the book - Any ideas?

Hi,

As always a big thank you for your ongoing support, we really appreciate it.

We've noticed a big rise (5o members ish) on the Del's Story Facebook group within the last week or so. We're curious to know where the new members found out about the group. If you are one of them, welcome and thanks and if you could let us know where you learned about the group please drop us a message.

Well we have just over a week before we finish the first draft of the book. 50,000 words, six months of work and plenty of research but as yet no definite name for it.

Any suggestions will be very welcome.

We have recieved some more press coverage. Nik Allen from My News Mag has kindly published articles in his magazines which have a large circulation in Hertfordshire. Top man.

The team Del co-manages, Enfield Town, got off to a winning start yesterday with a one-nil win against Brentwood in the Ryman North Division One.

Thanks for reading and we are hoping to announce some very exciting news in the next blog update due within the next ten days.

Cheers,


Jerry

(On Del's behalf as him and Emma are sunning themselves in Majorca :)

Staying Positive

Hi All,

Thanks for the continued support. The photo is of us getting ready to do some work on the book.

Below is a message from Del just updating everyone about how him and Emma are keeping, the progress of the book and his new football job.

I'd like to say a quick thanks to all the people who have contacted me about a request I put out on Facebook a week or so ago. Your help is really appreciated.

cheers Jerry :)

A message from Del:

"Hello everyone.

I've been keeping myself pretty busy recently. Em and I had a week's holiday down in Cornwall, the weather did it's best to dampen it but we still had a nice time.

The book looks like it's going to be written up by our deadline of August 25th. Jerry has been talking with MND experts and sufferers and we have some very interesting information for the book's chapter looking at a possible link between football and developing MND.

Also Jay Demerit of Watford FC has very kindly agreed to provide one of the forewords for the book. Jay's a great lad who I have known for a few years. He's probably my coaching claim to fame - I recommended him to Ray Lewington when he was Watford's manager and Jay hasn't looked back since. He deserves every bit of his success.

We are also hoping Gazza and Nicky Barmby will contribute to the book.

On the subject of the book I'm now putting together a list of possible photos to use in it. Does anyone have any photos of me, especially old school ones? If you do and you could send them over to me that would be fantastic. The address is jerrylyons207@hotmail.co.uk

An article about our work on the book has appeared in this month's Thumb Print magazine which is sent out to people with MND. Here's a link to the document.

Health wise I'm feeling ok but my arms get so tired now. I'm finding it harder and harder to drive but have to keep going because Em and I need every penny we can get at the moment.

My new role as Enfield Town's joint manager is going well. I had some real fears before taking the job along with my mate Steve Newing but it's turning out well and keeps my mind off of my illness.

The lads at the club have been brilliant. I think they already understand that while the disease means I struggle to move about my brain is still sharp and I'd like to think they respect my knowledge of the game I love. I'm really looking forward to the challenge of the new season.

Thanks for reading and make the most of now."

Del

Treating the incurable

Hi all,

Once again thanks for your support.

The following extract is about one of the alternative therapies Del is having.

It's carried out by a very kind lady called Seka Nikolic who is a bio-energy practioner. The book contains a more detailed account of the work she does.

Read on to find out more.

cheers

Del and Jerry



"When I first visited her practice is in Hampstead she said many ailments, diseases and illnesses are caused by energy blockages trapped in the body. Seka said her work focuses on clearing these blockages. I asked if she could help me. Her reply was simple and honest: “I don’t know but I will try.”

Seka heard about my story from my good friend Richard. She then very kindly offered to see me.

She works with a wide range of people including cancer patients, ME sufferers and also treats sports injuries, emotional problems and allergies.

Seka sees me every two months, for three half hour sessions spread over three days and doesn’t charge me a penny. I realise that she hasn’t had much experience working with people with MND but when you are faced with a terminal illness your mind is open to any offer of help.

I think she wants to see if her gift or ability, call it what you will, can help someone with my illness. I get a sense with her that there is a real genuine desire to help people feel better.

Seka believes that MND is caused by negative emotions such as stress, anxiety and grief.

My bi-monthly visits to her have really helped my quality of life and are now something I look to forward to immensely. Despite seeing up to 13 clients a day she still finds time to fit me in to her busy schedule.

I don’t think Seka’s treatment can save me but I know it has given me more energy. After a session with her I’m buzzing, Em even remarks how much chattier I am. The pain in my arms reduces after my sessions with Seka and I find I can do much more without getting tired.

I find I sleep better and the constant cramps that keep me awake seem to lessen in the first few weeks after Seka's sessions.

More than 14 months after my diagnosis I was still able to swim a few lengths, use the cross trainer and use a exercise bike in the weeks after seeing her.

From what I have heard and read about my kind of MND that’s pretty remarkable and I put a lot of that down to whatever it is Seka actually does.

I’ll give you some idea of how a session with Seka goes. I lay on a firm bed in silence and Seka begins laying her hands on different parts of my body. The heat that comes from her hands is incredible.

By passing her hands over the body, Seka can feel pain when diagnosing diseases.

On one memorable occasion I gasped out loud such was the intense heat I felt in my chest when Seka laid her hands on me.

After my first session I felt knocked for six. I was dizzy and needed to sit down. It only lasted five minutes and I pulled myself back together before I drove home.

I really managed to enjoy my extended honeymoon in America with Emma. I had seen Seka for three sessions before I went and despite constant travelling and being on the go all the time I didn’t once feel really shattered.

I have a lot to feel thankful to Seka for."

Thanks for reading.

A different type of update

A message from Del

Hi all,

Once again thanks for your constant support. This update is slightly different from our usual ones which normally include extracts from the book.

Jerry and I are often asked how we go about writing Del’s Story (this is not its confirmed name yet so any suggestions are more than welcome:)

We currently have around 40,000 words written and we are aiming for around 60,000 and to be finished by August 25 2009. We have covered a lot of my life up until now and are beginning research to find out whatever we can about any suspected link between being a sportsperson and developing MND.

So here is how we do it……..

Firstly neither of us has ever written a book before so we are kind of making up it as we go along. It seems we are doing ok so far because the feedback (which we love to get, good or bad) has been pretty positive.

Two to three times a week Jerry comes to our house and we record ourselves having a chat about pre planned subjects. Tonight we are talking about my relationship and love for Emma, previously on Tuesday we discussed my football coaching career.

Other subjects which represent chapters of the book have included dealing with my diagnosis, my daily struggle with MND, my football career and happy events like my wedding, holidays abroad and time spent with my friends and family.

This has been the way we have gone about it for the past four months.

Once we have finished the taping session Jerry goes back home, listens to it and then writes it up. Then we go over it together and make sure it’s accurate and makes sense.

This isn’t as easy as it sounds because I have a memory like a concussed goldfish with a bad hangover and Jerry has such a short attention span he’s like a kid with ADD who has binged on Coca-Cola and candy floss.

Sometimes our sessions are difficult because of the nature of what we are discussing. I think though it’s made easier because we’ve know each other more than 25 years and we often have a laugh reminiscing about events and people from the past.

Slowly but surely we are getting there.

We are still looking for a publisher and will be increasing our publicity efforts as we get nearer to having the book completed.

Thanks for reading and make the most of now.

Love Del.

Things to do before I die

Hi All,

Below is a message from Del and the latest extract from the book.

Cheers,

Jerry

Hi,

Firstly thanks for all of your continued support and love.

We have had a couple of week’s break from working on the book. During that time I’ve been to Las Vegas with Em and some family and friends.

I also organised a day out for two coach loads of friends and family to the Derby in Epsom on Saturday. It went fantastically well and I think everyone had a great time, especially if you judge it by the amount of alcohol we got through.

I’m doing ok and although my arms might be giving up on me my will to carry on certainly hasn’t.

I’m glad to be focussed again on the book. We have a lot to do if we are to reach our target completion date of August 25 but we are confident we can do it.

Thanks again,

Del


Here is an extract from the book which follows on from Del’s diagnosis and how he put together a wish list of things he wants to see and do.

“That first month was unbelievably tough. I’d wake up very stiff and had to really concentrate just to get out of bed. This panicked me. Had the disease already spread to my legs? No one knew how quickly the disease would spread. I was staring into a dark tunnel not having a clue where it led.

Out of the darkness came hope in the simple form of a few scribbled bullet points on a piece of scrap paper that made up a short but powerful list.

A friend visited me and Em a week or so after Em proposed and asked me about things I’ve always wanted to do. And so my dream list came to life. I guess it was like one of those ‘Things to do before you die’ lists with one massive incentive. I know I ‘m dying and it really is now or never.

The list was full of simple treats and once in a lifetime adventures. A couple were in place already. My stag do at the Grand National race meeting was already booked for the beginning of April. It was just a few of my closest friends and I having a good drink and watching two days of horse racing. Em and I were getting married on May 29 and this weekend with the lads could not have come at a better time.

I’ve always wanted to go with a load of family and friends to watch the Derby meeting at Epsom. Because Em and I only wanted a small intimate wedding this Derby day out was a fantastic way of sharing our joy with friends and family who couldn’t be at the reception. With that and the stag do at Aintree everything was falling into place.

I’ve always dreamed of travelling across America. Through the unbelievable generosity of someone I’ve never met and still to this day not know who he is this dream became a reality to.

Some of the things on the list were not as grand.

These included having a weekend on a barge. When Em and I lived in Berkhamstead we’d often take walks on warm days along the canal that went through that lovely town. We’d stop off along our way for a quick drink in a pub called The Boat which sits on the banks of the canal. I use to marvel at the barges. Especially when I often saw the occupants of a few of them anchor down and pop in for a pint. I’ll have some of that I thought.

I’ve always enjoyed darts and have always thought a great night out would be to watch the World Darts Finals. Probably Phil ‘The Power’ Taylor playing some other bloke. That was who the final normally featured.

Horse racing featured prominently in my list. I’ve always enjoyed racing and love horses. My condition permitting I’d love to ride a horse, so riding one also went on the list.

The list gave me things to look forward to and events to plan and occupy my mind. It gave me a reason to keep on going, to keep fighting and to stave off the dark thoughts.

Another dream was to wake up on Christmas morning on a beach, somewhere hot, beautiful and peaceful. Again it was through the generosity of others that this dream came to life.

Also I want to visit the Lake District as many friends who have visited that region have told me how beautiful and peaceful it is. "

Del’s List
(X signifies I’ve achieved it).
Grand National at Aintree X
Derby at Epsom X X
World Darts Final
Ryder Cup
Lake District
Hire a barge for a weekend
Wake up somewhere hot on Christmas X
Travel around Ireland
Ride a horse X
Go from coast to coast in America. X
Visit Alcatraz X
Picnic in Central Park, New York X
Play roulette in the MGM Grand in Las Vegas X
Niagra Falls X
Watch Chicago White Sox X
See the Grand Canyon X

Thanks for reading.

Magazine article & 3rd extract

Hi,

Below is an article about Del's Story that is being published in a magazine in the near future. It contains an extract from the book.

Thanks for reading.

Del & Jerry

Former England schoolboy international footballer Del Deanus was diagnosed with Motor Neurone Disease in February 2008 aged 34 years-old. Together with his childhood friend Jerry Lyons he is writing a book about his football career, living with his illness and exploring whether there is a link between playing certain sports and developing MND.

Starts

Del Deanus was an outstanding young football player representing an England schoolboy team that starred Ryan Giggs and played for Tottenham Hotspur for four years.

When he was diagnosed with MND he wanted to find out as much as possible about the disease. However, he was frustrated to find there were not many books available and decided to do something about it.

Del, who lives in Welwyn, in Hertfordshire, said: “After the initial hammer blow of being told I was terminally ill I searched everywhere for books which would tell me more about MND. I wanted to understand what was happening to me and what to expect in the future.

“I only found one book which was written by an American man who has the illness. To be honest I couldn’t relate to it and that got me thinking about writing a book about my own experiences with MND. It’s not just a book about the illness and how my wife Emma and I are coping it will also tell my life story.

“I want to raise funds for the MND Association through the sale and sponsorship of the book when it’s eventually published. Also I want to raise awareness about the disease and I hope that it will be of help to people who have been diagnosed with a terminal illness.”

Since his diagnosis Del has got married, travelled coast to coast across America and compiled a wish list of things to do before he dies including visiting the Lake District and attending the Grand National race meeting at Aintree.

Jerry, who is a former journalist said: “I met Del more than 25 years ago when we were in the same primary school football team and we’ve been very good mates ever since. Del’s an inspiration to many people who know him and his courage in the face of this illness is remarkable.

“Far from being a story about a young man dying from a devastating disease Del wants it to inspire people to make the most of right now and live life to the full. We are aiming to have the book finished by the end of August this year.”

Here is an extract from Del’s book.

Being told you have a terminal illness is shattering but it does not need to be the end of your life. I have done more in the year after my diagnosis than in my 34 years prior to it.

It’s clichéd but you really do have to make the most of now. My first month after diagnosis was a daily fight to keep up the will to carry on. There were times when I wanted to drown my sorrows with alcohol and just get so drunk I’d forget everything.

I didn’t though as this would have left me feeling even worse the next day and could have been the start of a downward spiral that would speed up my death.

I knew how important it was to stick to a good routine rather than a bad one. It sounds obvious but I had to constantly remind myself.

Coming to terms with a terminal diagnosis, whether it is MND, cancer or any other life sentence is incredibly hard. There’s no getting away from the initial pain, tears, fear and depression.
Up to three times a day I’d feel absolutely terrible but you have to keep fighting, hanging in there like a boxer caught on the ropes.

At times I’d be angry. What had I done to deserve this? Then I would feel sad and depressed. There were lots of tears. Being around people helped, but it was when I was on my own that the darkness really fell and engulfed me.

Certain things got me through those dark, desperate spells. The first was probably acceptance. It does take time for the enormity of what you have been told to sink in but you have to accept it. There’s no point being in denial. Eventually, to coin a phrase from one on my doctors I decided to make the most of the bad hand fate had dealt me.

Secondly don’t be afraid to grieve, to cry, to scream. There’s no point going around pretending to be strong. You have just received the worse news possible so don’t hold it in. I originally thought that I couldn’t show I’m upset and kept up a strong appearance to others but looking back I didn’t have to or need to.

If you are feeling something, let it out just don’t bottle it up.

It’s really important to take the positives out of your situation. There really is always someone worse off out there. I think of Jade Goody. The poor girl was dead within a few months of her diagnosis leaving behind her two little boys. I really felt for her and her family.

My situation has at least given me more time with my loved ones. Having been given a life expectancy of two to five years it’s important that I and others in a similar circumstance make the most of those years. They could be the best ever.

Del and Jerry are very keen to hear from potential publishers of the book. All profits from the sale and sponsorship of the book will go to the MND Association.
To find out more about the book visit Facebook group Del’s Story and blog site.
http://www.facebook.com/group.php?gid=78641065667&ref=mf
http://delsstory.blogspot.com/

Gazza and the mystery of the secret sniper

Hi,

Del spent four years as a schoolboy and youth team player at Tottenham Hotspur between 1988 to 1992.

During his time there he starred in the same team as Nicky Barmby, played next to Sol Campbell in the former England star's debut as a centre back and has many insider stories about life at White Hart Lane.

It was the era of Paul Gascoigne, Gary Lineker and Terry Venables. Gazza and his antics fill an entire chapter in Del's Story. Below is one story out of many that Del shares about Gazza.

"No matter what’s been written and said about Gazza I will always remember him as being one of the kindest, funniest and most generous people I have met in football. Especially when you consider what a legend of the game he is and what a huge star he was during his playing career.

His shooting skills extended further than the playing pitch as many of us apprentices found out to our discomfort.

One day one of the apprentices complained of being stung by something during a run at the training ground. At first we thought nothing of it then more and more players in our squad were getting ‘stung’ on the legs and body.

The secret stinger turned out to be Gazza. Somehow he got hold of an air rifle and wreaked chaos with it for a few days. He’d be hanging out of a changing room window sniping at us, taking pop shots whenever we got within range.

None of us apprentices would dare tell our coach Keith Waldren. Gazza was Gazza and even though he was using us for target practice everyone loved him.

Keith Waldren must have been scratching his head when we all turned out for training wearing full tracksuits with the collars turned up even though it was summer. The tracksuits provided protection against Gazza’s pellets. Whenever we were running near the changing room window where Gazza lay in wait we’d burst into sprints and zig zag.

Waldren must have thought his young team were losing their minds.

Somehow he found out about Gazza’s sharp shooting and confronted him. From what I heard Gazza took no notice and I think he even began including Waldren in the target practice.

It stopped when Terry Venables had a word with Gazza and pointed out to him it was dangerous.

Gazza wasn’t doing it to be spiteful he was just, in his own crazy way, having a laugh."

This is just one of a number of great stories in Del's book about Gazza. Others involve Gary Lineker, Pat Van Den Hauwe and Sol Campbell.

Thanks for reading and remember to tell your friends about this blog and the Del's Story Facebook page.

Make the most of right now.

cheers,

Del and Jerry

"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.