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.