Happy 2009 everyone!
I hope that everybody had a wonderful evening’s celebration, in whatever manner you chose.  I know I did, obviously at home, but surrounded by my closest friends and chatting, reminiscing and laughing our heads off.

A classic example of the type of giggle I mean was caused by a clanger dropped by my dear brother.  We were having a conversation about boxed set TV series I could watch having finished the West Wing, 24, and having The Wire.  My brother’s solution was, now wait for it, Six Feet Under!!!  Having thought about it overnight, I might have to go and get it just for a laugh!

I’ll write again soon.
All my love,
Neil

Personally, my lasting memory from that evening was the text message we sent out to those friends who hadn’t managed to join us for the evening. It read

‘Happy New Year, I’m sorry I missed it!’

and was accompanied by a photo of Neil covered by white sheet with only his feet poking out of the end and a luggage label tied to his big toe.

Hi everybody,

I just thought I’d share the funniest thing I’ve encountered today. I have a mobile phone which has been switched off since about August, i.e. when I couldn’t hold it or dial it. I have been meaning to cancel the contract since then but things seem to have been rather busy.

I made time to do this today, with the help of my friend Simon. The conversation very roughly played out as follows:

Hello to all our readers, families and friends on what seems to be a very chilly New Year’s Eve.

We hope that you have all had as warm and wonderful a Christmas as we had here at home. It was very quiet for us as I told you in my previous post. Quiet in that only parents and my brother joined, quiet that it was contemplative, but mainly quiet because it’s harder than you might think to drink all your alcohol through a straw!  To dispel another urban myth, it doesn’t appear to get you drunk any quicker at all!

Hi Everybody,
I thought it was about time that I talk to you about the Advanced Directive I have formulated in consultation with my wife, my GP, and a number of other consultants in palliative care and ethics. I would also like, for the benefit of others in my position irrespective of their disease, to explain the upsetting route to establishing the manner of my death.

Hi everybody,
As the title may indicate, we have news.  We have received a call from the Daily Mail this evening in which they have confirmed that article is definitely going to run in tomorrow’s edition.

Please tell all your friends to tell all their friends to buy a copy (plus an extra copy for others who might have forgotten!).

Finally it has been brought to my attention that my hair colour in said photographs may be slightly different from its natural colour brown-blonde.  Well even so, it is natural and did not take 15 attempts and £200 to look exactly the same as mine.  (This was an unwarranted personal attack at my wife so this may well be my last ever message.)

Much love,
Neil

There were times of laughter in our house, and for Neil, this had certainly been one of them!

Hello World,
I went to study at the Edinburgh College of Art. As architecture students, we worked all the hours God sent creating our masterpieces. The rest of the time, as was the case with my friend Doug and I, and in actual fact turned out to be a majority of the time, was spent gleefully letting the day pass us by. We would play pool, talk about life, love and the universe. On one occasion we even managed to flick a match from the top of the box and have it land flaming in the back of some poor unsuspecting freshers hair! All of these activities were carried out in the joy that was the student cafeteria, Albertina’s.

For me though, the highlight of these afternoons was watching one particularly beautiful girl playing pool, not in a depraved way because she always draped a cardigan around her waist (although I have been told recently that the cardigan was worn as a rebuttal to my wandering eyes). The year was 1993 and my relationship with the then Miss Noble had begun.

Hi everybody,

We had a wonderful Christmas Day, so as I can not go to the pub for the traditional Boxing Day pint I thought I would tell you about it.

It began late Christmas Eve when the last articulated lorry arrived with his delivery of yet more toys for the young master of the house. Louise and her mum were in a frenzy of wrapping, as were my brother and his girlfriend as they tried to wrap the un-wrappable object. I sat with my mum looking on from the lofty heights of my chair and remembering how much I used to hate wrapping presents, and thinking that this time I would not mind spending hours on the floor getting sore knees, Sellotape ripping the hair from my arms, and losing the rag with Louise because I think they are already perfectly pretty enough without the extra bow. Anyway, I have decided I quite like present wrapping now. But a word of advice to anyone in my position, for crying out loud don’t try to give them any kind of advice or direction.

Ho–ho–ho and Merry Christmas to everyone,

This will be my last post for a day or two, unless I tire of all the frivolities in which case and I’ll pop back and rattle on to myself for a bit.

As Louise and I sat down to dinner on Christmas Day of last year, I looked across at my wife and down at my little boy relishing every second as there was a very real possibility that it will be my last. I cannot begin to explain to you all just how much it means to me to be here this Christmas Day.

The circumstances are obviously somewhat different, but it’s surprising when certain traditions and rituals are unavailable to you how little you miss them. I do know for certain that I will miss the Boxing Day pint with the usual suspects (you know who you are)! I will miss not being able to travel the length and breadth of the country from London to Leeds to Edinburgh to see all those people I would not see too much of during the rest of the year. But one of the things I have missed most has been helping with the decorations – Louise and I used to go on a little mission into town to buy one special decoration which we would bring home and take a photograph sitting on the floor in front of our tree.

Hello Everybody,
We have been as reliably informed as one can be in such things that our appearance in The Daily Mail is scheduled for tomorrow. As excited as we are, we would urge caution and have a quick leaf through before buying this time!! Obviously if you are a Daily Mail reader please don’t let this discourage you from buying one anyway!
Much love
Neil

The communications officer at the MND Association sent me an email early the next morning to let me know the interview had not been published, again. My reply read:

Right… I need your help! Anyone who’s been within five feet of us knows what a headache it is getting through the day, and you think you’re just getting somewhere and then somebody says: ‘What’s for dinner?’

I know this can be a mild form of irritation in most households, but in this one there’s very limited preparation time, a lot of restrictions, and there’s always the possibility it could cause a fatality through choking. No pressure then!

Firstly, the muscles that Neil uses to chew are now quite weak and and his swallow action is beginning to be a problem. There have been some mild choking incidents. These can be caused by something as simple as water, but just imagine you’ve had some water ‘go down the wrong way’ and you don’t have the ability to cough, it’s pretty scary.

Hello everybody,

This is another quick note to let you know that we will be appearing as star guests in the final of Strictly Come Dancing on Ice. We have fitted skis to the bottom of my chair so keep an eye out for something really special.

Hello everybody,
I seem to be asked this question more and more frequently of late. And depending on what time of what day I am asked, the answer will vary enormously. Other questions are asked under the same guise, such as do I not feel angry or cheated about how cruel the situation is.

The way I feel about our predicament is very difficult to verbalise, let alone write down on the blog. Obviously, there have been stages. Stage one was disbelief tinted with dread as I was given the diagnosis. Having been here before with dad, it was never going to be pleasant. Stage two was to ignore it for as long as possible in order to enjoy every possible second with my beautiful wife and newborn son in our newly bought family home. Stage three arrived when it was no longer possible or realistic to ignore the symptoms. Until this time we had been enjoying a relatively normal existence in our new house, having fun with our friends and I was enjoying a full-time position in an architecture practice where I ran a project for a £50 million cardiac and renal centre for Cork University Hospital. For those who are unaware of the time line, we moved to Harrogate when I was walking with a limp on one leg and using a walking stick in April 2008. By today my movement is limited to slight movements of the neck, speaking and swallowing. Given the speed of this progression I think I’m probably on stage 75 but I have no idea what happened between now and stage three.

Hi everyone,
What is the world coming to when your own mum starts to muscle in on my publicity! But muscled in she has, and in magnificent style. Below you will find the link to the local newspaper article written following a coffee morning and fundraiser organised by mum. I’m sure you’ll agree that this is a brilliant effort, and no I’m not just saying that because otherwise I get a clip round the ear.

Two posts in one day! (And it’s been way more than a week I’ve been trying to find the time to get this together!)

It’s been suggested, since our wedding anniversary, that we post some wedding photos. Ordinarily I would feel a bit weird about sticking them on the internet, but it got me thinking that there are a lot of people who read this blog who’ve only met us since the onset of Neil’s diagnosis.

I don’t feel any of the photos we’ve just re-vamped the website with show off my handsome husband! So I’ve put together some photos which I think best capture Neil during my time with him. They’re sort of in chronological order.

I’ve tried not to embarrass him… apart from the one in the swimming pool… personally, the beard was always fine by me, but I realise this may come as a shock to some of you… and yes, we know about the Chuck Norris similarity. 

Hi everybody,

I hope that this is the first of one or two posts today not least because Louise has been trying to get a post on for almost a week.

As the title suggests we have news. Actually we just have great news which is that the Sheffield Institute was granted full planning permission just yesterday. Having spent my career in architecture, I know that this is often the most difficult part of the process and many projects fall at this hurdle. We can all now look forward to watching our brightest hope rise from the ground. Please don’t forget to visit the Sheffield Institute Foundation website.

Hello everyone,

Nearly all ready for Christmas I hope? You guys out there are giving us Christmas presents already simply by asking as where you are to put the money you have already raised or are in the process of raising.

There are a couple of ways you can donate your money to support motor neurone disease research and also the care of patients with the condition. You can find links to two charities in the borders of our [original] blog, these are the Motor Neurone Disease Association (MND Association) and the Sheffield Institute Foundation. The Sheffield Institute Foundation exists to build and staff a centre of excellence dedicated to finding treatments and ultimately a cure for the condition. The MND Association is less directly involved in research [actually, the MND Association funds a lot of research - the Editor] but is concerned more with the quality of life of sufferers and their families. We would not presume to tell you which of the two charities is more worthy and would strongly recommend that you have a look at each of their websites.

If you choose the MNDA then please have a look at my dad’s tribute page as you can make donations through this and we are issued regular updates as to how the money is being used.

Please let me know if you have any other questions and I’ll be happy to help.
Much love,
Neil

This is the most unsuspecting of posts, Neil turns solely to fundraising, no other thoughts of the day, but I know it was a day of inner turmoil and this was his way of not talking about it.

Hello everybody,

Just a quick note to show off a little… I wrote this post all by myself! At last, I am connected to the world at last, albeit somewhat slower than usual. This is due to the joys of voice recognition software which since having to wear my ventilator full-time I had deemed redundant. I am obviously delighted to learn otherwise and look forward enormously to speaking with you all on a one-to-one basis.

I’d also like to take this opportunity to thank every contributor to the blog since we started, old and new, as your words of support and encouragement really do spur us on.

I will sign off now as I hadn’t realised how tiring talking to your computer can be.

Much love,
Neil

Neil had tried to use voice recognition software before, he had bought an off-the-shelf secretarial version when he first began to find typing difficult. He had given up his laptop because it made his wrists ache to reach the keys. We then bought a PC with a wireless keyboard so that he could put the keyboard on his lap if it hurt and it gave him an altogether better posture as he was looking straight ahead at the screen instead of slightly downward, easing strain on his neck and shoulders. This worked for a while but eventually it became too tiring for his arms and then his hands began to lose dexterity. These changes were cruel. There was little way to decipher whether something was only difficult for a day or if it had gone forever.

Hi everybody,

Firstly I would like to thank everyone for their responses to our little TV appearance yesterday. All your comments are greatly received and really help to spur us on in our campaign of raising awareness.

On the subject of assisted dying, and for fear of our agenda being lost in the clamour of recent press, I thought I would like to give you all my thoughts on the issue so that we may then get back to raising awareness of MND and money towards further research.
I believe that current legislation does not work as the topic is so subjective. I suggest the reason no charges are brought is because it is such an emotive issue and as such potentially political suicide for the government. In the case of assisted dying, the courts ruling that “it is not in the public interest to prosecute” indicates that in fact it is not in their own interest to do so.

Hi everybody,

This just a quick note to let you know that we will be appearing on ITV’s Calendar news in Yorkshire and hopefully Tyne Tees North East Tonight programme at 6pm this evening, and possibly again during the 10 o’clock news.

Please watch out for us and tell all your friends to tune in.

Two posts in one day, aren’t you blessed. Anyway, just thought I would share one of those little moments with you which make each day worth fighting for.

This morning, Oscar came to see me.  

I was laying in bed watching TV when Louise placed him in my lap. He turned to face me and crawled up my chest, ever-determined to reach nose level with me. He then proceeded to gently remove my mask, plant a kiss upon my lips and replace the mask allowing me to breathe again!

This one little thing counteracted all of the not so good things that happened today.

Much love
Neil

–

All Neil had was his voice and his smile to entertain a one-year-old, it’s a tough gig, especially when you remember that talking took Neil a great deal of effort and too much of it would make him very tired. Neil never complained if Oscar seemed indifferent to him, but it must have been heartbreaking.