Monthly Archive for December, 2008

The future’s grim, the future’s a mobile phone company.

Published
by
neil
on December 31, 2008
in Life
. 0 Comments

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:

Simon-negotiated the never-ending automated system and found a human being to speak to.

Simon-hello there, I wonder if you could help me. I’m calling on behalf of my friend but he is unable to speak very well.

Person 1-certainly sir, we will have to clarify security details first. (Simon provided the information requested, which I had given him earlier) Thank you sir, all I need to do now is verify some details with the account holder.

Me- hello, I am the account holder. (We then ran through the same details again and following the satisfaction of Person 1 she agreed to transfer us through to the disconnection department).

Person 2-Hallo sir, how can we help you today?

Me-I would like to close my account please.

Person 2-oh, why is that Sir? I can see that you have been with us for a considerable period of time.

Me-it is because I am dying.

Person 2-oh, I see. But the deals we have on offer for loyal customers such as yourself are a really excellent.

Me-really, I’m not interested in any deal, and I just want to close the account.

Person 2-it includes a new handset, and millions of free texts and calls.

Simon-hello I am speaking on behalf of my friend. He is not joking, he really is terminally ill.

Person 2-okay, but the deals he could have are just amazing!(A pointless description of the perks being offered now follows until we get to the point where the 12 month contract is mentioned)

Simon-look he really is dying.

Person 2-okay, what about if we gave your friend a couple of months extra free?

Me-(now in fits of laughter that my ventilator alarm beeps!) Well if he can do that then you are in a better man than every person on my medical team!

Simon and me-I really really am dying. It isn’t a windup. You think I might be able to cancel my contract.

Person 2-yes sir, I’ll do that right away.

And that was that. We honestly did not know whether to carry on laughing as we had done throughout the call jump in a taxi to which other call centre in India or wherever he was and insert my mobile phone swiftly followed by my mobile phone contract into an orifice from which it would need a surgical procedure to remove!

Made us laugh anyway, I hope it does you too!

Much love,

Neil

Are you looking forward to 2009?

Published
by
neil
on December 31, 2008
in Life
. 0 Comments

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!

This is a situation that I intended to remedy later on this evening as we all join together to welcome 2009.

I can understand that some of you may be wondering how we can get together for a night of celebration knowing, at least in part, what the future year holds.  I would like to try and explain my point of view, which may well be different from that of my wife and our families.  Firstly and most simply is that I did not expect for one second to be here.  I had hoped to be here for Oscar’s birthday, let alone four months later and very grateful I am for that time.

With that gratitude has come some unexpected hope that 2009 may hold something else in store for me.  I am not talking about miraculous cures being this hope, you will all have gathered by now that I am a realist.  I’m talking about my living on a little longer giving me the chance to impart more knowledge to not only the public through  our campaign, but also let those people dear to me ask their questions.

The campaign has, almost, become my sole focus.  At the end of this campaign lies a cure, so how could I not use as much of my additional time as I can.  Similarly, how can my loved ones not be the centre of attention in every waking second.  The answer to this is of course is to allow one is to deny the other, a difficult balance you will agree.

I have the fortune of being in a position where I can do both.  My family, my wife and her family fully support our fight.  This means that I can spend the time I have left with the people that I love, fighting the disease which let me live through 2008.

The icing on my cake is that I get to see my son continue to develop, hear his new words, discover new things.  I am also overjoyed that I get to grow a little older with the woman I was meant to be with.  And that my friends is my toast to 2009.

I consider myself fortunate to have what I have, and if you’re half as happy as I am then you are doing all right.

All my love,

Neil

A breath of fresh air or a foul gasp?

Published
by
neil
on December 30, 2008
in Life and advance-directive
. 2 Comments

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.

To do this, we must rewind to early August. We had seen a respiratory specialist from the local hospital who identified that the source of my recent headaches was an elevated level of carbon dioxide in my blood. She suggested that we contact a specialist centre to see a consultant with a view to being given a positive pressure ventilator for use during the night. This we did within a matter of days.

We were given an appointment to see the consultant and also the nurse specialist who specialised in respiration and associated equipment. Bizarrely, we saw the nurse specialist first and the consultant second. The nurse specialist having done various tests, including some conducted by a neuro-physiotherapist, selected the most suitable ventilator for me. We then spent the next 15 to 20 minutes fitting and testing the ventilator and the various masks that came with it. We were told how to operate and maintain the ventilator and were advised that this was particularly suitable to a first time user. Every member of staff was polite, very helpful, and clearly experts in their field.

Our appointment with the consultant was equally professional. He explained that using the ventilator overnight would eliminate the headaches and provide a feeling of being energised during the day. He also explained that if we found that the use of a face mask was either too uncomfortable or too obtrusive then he would be willing to offer me an elective tracheostomy.

Here endeth our lesson for the respiratory challenged. Or had it? The weeks progressed and I seemed to take quite well to using the ventilator overnight. Then I started to take a nap in the afternoon. As the similar symptoms occurred, having taken advice from a specialist centre, I began using the ventilator for two to four hours in the afternoon. As my condition progressed I began to feel lightheaded, dizzy and short of breath during waking hours. We asked if increased use of the ventilator would reduce my own capacity to breathe, the answer was no. So we began to use the ventilator as I felt I needed. At this point, the air pressure used was very low and used to backup my own chest muscles.

Over the coming weeks, my chest muscles and the secondary neck and shoulder muscles began to fail with alarming speed. We had a number of conversations with the specialist centre which first resulted in an increase in the air pressure, however this seemed to have minimal effect. It was suggested that we graduate to a heavier duty machine with integral battery. At this point I was having to be lifted via a full sling from my chair to the toilet and waiting for the ventilator to be moved and plugged in so then I could do the necessary whilst breathing. We did of course accept the battery powered unit. At this point, we were also advised how to increase the air pressure if we required it. Other than being able to change the pressure, we continued to use the ventilator exactly as we did previously. The days passed and well before our next appointment to see the consultant we found ourselves using the ventilator all day and all night. This is our current position. I can be removed from the ventilator for periods of up to one minute before I become distressed.

You may be wondering when I’ll get to the point. That would be now.

Had I not been ventilated at all, I would have died some months ago. The manner of my death would in all likelihood be like that of my father and his father before him-I would have been under strong painkillers and other drugs, fallen into a coma caused by respiratory failure, and died naturally.

This would have been my preference.

Unfortunately this choice has been removed from me. It has been removed by some of those professionals whose obligation it was to make sure that I was in possession of all of the facts before taking or rejecting their council.

At no time were we advised that the use of a ventilator full time may affect the nature in which I may die, and at no time were we advised that devices such as the Advanced Directive would have to be decided upon, cried over and written at a time which carries enough decisions, enough crying and enough living to be made and done.

For those of you who are in a position such as I, ask questions of your medical team until every single solitary quibble or query you have has been answered. I don’t know whether it will be of any help or not but you are free to have a look at, pilfer or downright pinch the attached copy of my Advanced Directive.

We do not want a single person out there to go through what we had to go through.

Forewarned is forearmed

microsoft-word-advance_directives_about_future_medical_treatment

Neil.

Daily Mail Take Three!

Published
by
neil
on December 29, 2008
in Life
. 0 Comments

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 a £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

Some things need to be said…

Published
by
neil
on December 28, 2008
in Life
. 0 Comments

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 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.

As many readers will already know, Louise and I were never romantically involved during our time at university. We did however manage to have a succession of relationships which were either too dull, too mature, too immature, too much hard work or just plain crap. Through these relationships we found ourselves with a shoulder to cry on and someone who would not judge us, namely Neil and Louise. I think it is from this starting point that the rest of us was built upon.

Sometime in August 2003 we went to a mutual friends birthday party where some idiots had decided to fill a watermelon with vodka and let people drink it. It was at this event where Louise and I became reacquainted. Well one thing led to another and we found ourselves buying each other a Chinese take-away the following evening.

In September 2003 Louise left for Portugal with work. It was about six weeks after we met. I flew out to Portugal a couple of weeks after she left, and whilst there I asked her to marry me. After a few moments with a panic-stricken look on her face, she smiled and accepted.

Now enters the most joyous, fulfilling and exciting period of my life. In short, there was a glorious wedding with me in a kilt, an amazing honeymoon with the elephant rides and baby turtles, then there were flats with a roof terrace, a flat opposite our very special friends, we bought our very first house,
we decorated it and then came the icing on the cake. Oscar.

It all sounds almost dreamlike. It certainly does now. Louise and I have been married for little over four years. In that time all of the above has happened. In the last year of it, we have also been dealing with motor neurone disease. You get a feel from the blog how I’m dealing with it but I’m not sure if anyone other than me comprehends the physical strain, the emotional strength and the sheer power of character my wife has. She has unflinchingly tackled aspects of my care which would make many others run screaming out of the room. In addition to my care, she is also being a mother and father to Oscar and you only need to meet him to see testament to her success. Oh and I forgot to mention the cooking, the laundry, the floor cleaning, the maintenance of all of my ventilator equipment, paying the bills, organising finances, and a partridge in a pear tree.

The reason for this post is to recognize everything you do for me and for Oscar. I would like you to keep some of your strength to see you and Oscar through taking as much positivity from this situation as you can.

In the meantime, please know that you are loved in the same way as the watermelon way by me and always will be. As another bonus, your natural ability with your son has instantly resulted in an unbreakable bond which will always be there in your times of need.

I love you as always,

N xx

I’m Feeling Bjorn Again This Christmas…Mmmm!

Published
by
neil
on December 26, 2008
in Uncategorized
. 6 Comments

Hi everybody,

We had a wonderful Christmas Day, so as I cannot 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.

Christmas morning, unusually for me, started early. Louise and mum woke me up with a cup of tea and biscuits and, having consumed said beverage, I was hoisted into the lounge and for the first time in a long time was lowered onto cushions on the floor. When Oscar had finished his breakfast, I was able to look him in the eye as he walked towards his mountain of toys and see the look of bewilderment followed by delight. I then was able to stay on the floor with my wife and son for just over an hour, revelling in the fact that Oscar could crawl over and over my legs as opposed to my having to view events from my chair. I cannot explain to you how precious that 60 minutes was, but I am sure you can imagine.

Christmas dinner was also a little unorthodox. Because of the rather large size of my chair, we were unable to fit around the table, so it was dinners on knees. I don’t think anybody minded because the aperitif, soup, main course and dessert were delicious. Thanks to Johnnie and Rosie for their efforts in the kitchen. Thanks also to my mum for being the provider of the booze.

Oscar had exhausted himself by evening and went out like a light. This led the way to some evening fun and frolics. We decided to watch a film, and halfway through I swear I was nearly dragging myself out the front door by my eyelids. Oh what I would not have given for an ejector seat in my chair. Mama Mia! Not another Christmas movie like Die Hard - Noooo!!

Seriously though, I personally have had a wonderful Christmas and this little problem of mine just doesn’t seem so big when you are surrounded by people who love you.

I hope you enjoy the rest of your Christmas.

We send all our love to all of you,
Neil, Louise and Oscar

xxx

I am lost for words…almost.

Published
by
neil
on December 24, 2008
in Uncategorized
. 11 Comments

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.

For the most part, I think I’ve discovered that much of what I associated with this time of year doesn’t mean very much at all. It’s not about presents, it’s about friends. It’s not how much you drink or eat, it’s about family (obviously it’s a bit about drinking and eating!). I know this sounds a bit cliche and preachy, but that is just how I feel today.

Some of you may know, some of you may not, but the amount of help Louise and I have required over the last nine months or so has been enormous. I would have hazarded a guess at there being at least 50 people involved in our professional care team for starters. I would like to thank every member of that team for taking such good care of me and with such dignity but also as a 34-year-old not an 84-year-old and so with some fun and laughter (you know who you are too).

Our family and friends know what their help and support means to us but I would like to tell everybody else how much you have done. Hundreds of miles have been travelled up and down the country, holiday time been used to come and look after me, all manner of food prepared and ready to eat has been delivered, DVDs bought and rented by the dozen, helping me with near enough every requirement from dawn till dusk, helping us rearrange our house (about 20 times so date I think and have been told they were all required — besides I always love the game of hunt the socks and towels afterwards! I love you R W.)
The thing we had not counted on was the volume of support pouring over us through The Plattitude
. Your response has been incredible. The way it makes me feel is that through the momentum our community is building you will all be instrumental in finding a solution to our particular problem. In the last three or four months your efforts, besides looking after me and providing support on here, have raised in excess of £4000! This is the best Christmas present I could ever wish for.

I would also like to say a special thank you to the elderly lady who visited house this evening. Mrs Kitching tracked us down through the motor neurone disease Association to deliver a cheque for £1000. Unfortunately I was unable to meet Mrs Kitching but if you are reading this then I would be delighted to meet you in the New Year.

I can think of anything to say, blimey I may actually be lost for words!

Oh, save for thank you from the bottom of my heart for everything, and

Merry Christmas and a blinding 2009!

Neil, Louise and Oscar xxx

Daily Mail Take Two

Published
by
neil
on December 22, 2008
in Uncategorized
. 12 Comments

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

I’ll give Jamie O’ a Trampoline for Christmas If It’ll Help Him Jump On This Band Wagon

Published
by
louise
on December 21, 2008
in Uncategorized
. 6 Comments

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. I know it’s scary to watch. I have to run to his ventilator and whack up the pressure as quickly as possible, get him sitting forward and guess when he’s trying to cough so that I can push down on his lungs to help force more breath out. I’ve been lucky so far that every time it’s happened there’s been someone else around to help me sit his dead-weight forward. You can do it with one person but you have to support his head with your shoulder and make sure you  stay away from his wind pipe. I’m not trying to be shocking here, I’m just trying to point out why Neil might be a bit nervous of what he tries to swallow. Choking is one of the biggest fears of an MND sufferer.

So I think it’s best to list the restrictions and throw the challenge out there, I need ideas!

  • Nothing difficult to chew
  • Nothing spicy (including black pepper)
  • No vinegar
  • No pastry
  • Nothing with a shell or skin (eg. peas, beans)
  • Nothing with a crumb (although he seems willing to make an exception for cheesecake)
  • No rice (too much chewing effort, not enough weight gain)
  • No salad (see above)
  • Nothing that can become ‘claggy’ in the throat (eg. chocolate!)
  • Fish is difficult to swallow and he’s nervous of the bones
  • Can only eat bread if it’s fluffy white and laden with butter
  • Nothing stringy (eg. celery, pak choi, mozzarella)

I think it best to add that he’s utterly sick of:

  • Cottage pie
  • Lasagne
  • Moussaka
  • Stew
  • Omelettes

And things that have been a winner recently:

  • Corned beef hash
  • Stovies (with skinned sausages)
  • Spaghetti bolognese (having been cooked, then frozen and re-heated, this seems to make the meat easier to chew)
  • Fruit salad with soft, non-stringy fruit

Although he’s bound to get sick of these too!

Ideas please, don’t worry about recipes unless necessary, I can google them.

Love Louise x

PS. Oscar will eat anything he can pick up with his hands and smear in his hair.

On the telly again!?

Published
by
neil
on December 21, 2008
in Uncategorized
. 6 Comments

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.

Err, actually the above is not entirely true. However, you may see us on the telly somewhere less glamorous and where legs are not absolutely necessary, or arms for that matter!

You can tune in to BBC1 Look North the regional news channel for the North of England where we hope we will be given a broader look at our case as my immediate family members were also involved.

So once again we would ask you to tell everyone you know, and for them to tell everyone that they now.

That is BBC1 Look North programme on television tomorrow, possibly at all editions, and to anyone who misses us we will be adding the link to the BBC website as soon as we know it.

Much love,

Neil