Last day at work

Yesterday I reached a milestone in my life – at the age of 47 I have taken early retirement, not so much by choice but because of disease progression and also because the company is closing the site where I work. In my (almost) 34 year working life (I started working at 14 in a corner shop at the end of the road where I grew up) I have only ever been out of work for two weeks. It will feel very strange this abrupt termination of one of life’s routines. It’s also a reminder that the disease has won another victory and cheated me out of a future.

For the past eight years I’ve worked at Eli Lilly, the American pharmaceutical company, which as it happens opened its first overseas manufacturing plant here in Basingstoke in the UK back in 1939 (the day after war broke out). Having been a resident of the town practically all my life (I was just a few months old when my parents moved down from London as part of the ‘overspill’ in 1960) I grew up thinking of the company as ‘that white building on the hill’. Even today where I now live on quite high ground, I can look towards town and the eye-catching building still remains a prominent feature of the surrounding landscape.

The striking features of the original Eli Lilly building at the Basingstoke manufacturing site

Eli Lilly have always had a good reputation with the town and have been regarded as one of the major employers. I considered myself extremely lucky when I was offered a contract position back in the spring of 2000. But like so many people brought in for a specific task (in my case to help implement a new computerised maintenance system) I only imagined myself to be there for a short while, although I hoped that it would be much longer. After all, I reasoned, what could be more secure then a position in a company that manufactures medicines and has been part of the town’s landscape for so long? But the pharmaceutical industry is of course just as susceptible to fluctuations and competition in the market as other industries. It was a sad day when the announcement to close the site was made in the summer of 2006.

But from the time I began working there it became obvious that the company was indeed a good fit for me. I had come from a much smaller company and so it sort of felt a little like moving from the countryside to go and work in a big city. But what impressed me most was that despite the size of the company it had somehow managed to retain a feeling of working for a much smaller family company. Instead of a cold, clinical ‘I don’t have time to talk or explain to you’ sort of attitude, it was very much a friendly and helpful atmosphere. And despite being a contractor for the entire eight years I was never made to feel like an outsider. Eli Lilly seem to treat everyone alike. To me this is all very important because we spend the largest part of our waking lives at work so it would be a crying shame to waste so much time in an environment that makes us unhappy.

Since my health problems started to impact daily activities late last summer, I’ve been amazed by the amount of help and consideration shown by my friends and colleagues at work. I’ve had people take on some of the tasks I would normally have done, file things away for me because I can no longer reach up, fetch me drinks, open doors, carry plates of food, brought me into work and took me home again when I had to give up driving, took the time to listen and to give friendly and helpful advice, and were patient with me when things took a little longer as I started to slow down. I consider myself extremely lucky to have worked with such a group of kind, considerate, helpful, friendly and caring people. So to all my friends, and in particular; Bill, Carry, Kim and Jane, who have done so much for me to help make my last working months so bearable, I offer you my heartfelt gratitude. Thank you so much for everything! I will miss you all!

So now I will begin a new chapter in my life. The worry I have at the moment is that I may start to feel socially isolated and without purpose now that I have stopped working and am no longer part of a team. When I was at Eli Lilly it always felt good to know that I was working for a company that enhances the quality of human life. Sure, I wasn’t at the ‘coal face’ actually making the medicines but in such an intricate operation there are many interdependent links and I was very happy and indeed proud to be a part of it. I’m so sad to see it all end and it’s been very difficult for me to hear all the people around me talking about job interviews and job offers and knowing that they are on a road that I cannot follow. I’ll just have to hope that there is some truth in the old saying ‘as one door closes another one will open’ (to new opportunities and possibilities). Fortunately I am the sort of person who has lots of interests and doesn’t get bored so I’m sure I’ll soon find things to occupy my mind and keep me active.

March has been the worst month so far since being diagnosed. In a matter of weeks I have lost the ability to drive a car and the ability to financially support myself, both of which I’ve been able to do all my adult life. In addition the disease has continued to progress down my arms into my hands and fingers making many tasks difficult and time consuming. I’ve been using up a lot of energy preparing for work each morning and by the time I left the house I would be feeling exhausted. I suppose at least now I’ll be able to relax a little more and take things a bit slower. But the cost of doing so is high.

I really do believe a positive attitude helps with this disease and it is for that reason why I am treating this as ‘early retirement’ rather then ‘stopping work’ and waiting for the end to come. I also believe that laughter is the best medicine because life is so short even without illness. In fact I’ve often heard it said that it takes far fewer muscles to smile then to frown so perhaps happiness is a lazy person’s emotion – an important point for me to remember just in case the disease ever spreads into my face – in which case I’ll be going around with a perpetual smile!

I’ve decided I’ve had enough of these troublesome motor neurones. I’ve looked after them all these years, gave them a home, put a shirt on their back, found them a job and this is how they repay me. They’ve turned on their master! Well I’ve worked out exactly where they hang out and I’ve already told them in no uncertain terms ‘I know where you live!’ I’m just waiting for that new superstore ‘Brains R Us’ to open and then I’ll be straight down there for a brain swap-out!

So what do I do in the meantime? Well I’ve been thinking about going into research myself. I thought if maybe I took a different approach I might have more luck then all these multi-million dollar efforts – in fact I’ve already made a start. I’ve bought a chemistry set in Toys R Us and some hamsters at the local pet store. We’re not going to mess about because time is precious so I’ll jump straight to the animal trials and we’ll see exactly how many of those hamsters really are guilty! 🙂

Mark

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End of the road

This week saw the disease progress to a new level and has effectively ended my days as a motorist!

For some time now I’ve been experiencing a steady decline in upper limb strength and energy levels. Driving the car had become a tiresome task and although it is fitted with power steering it often didn’t feel like it. Manoeuvring the car in tight spaces was starting to become very energy intensive and would leave me feeling slightly weak afterwards. I’d had a steering wheel ball fitted a while back in an effort to prolong my ability to drive, and for a while it did seem to make driving easier and offer hope that I could stay independently mobile. However, more recently it had become obvious that this was only ever going to be a short term fix and I knew that this was going to be the last year I would ever drive a car myself.

Earlier in the week as I reversed the car off the drive and began to straighten up and pull away, my arms became so weak from the effort of turning the wheel that they effectively stopped working altogether and ceased to respond to my commands. The best I could manage was to move them tiny amounts albeit with a strange and uncomfortable sensation of resistance. But this left me in a predicament as the car’s engine was on and in first gear. The only reason I wasn’t moving was because I had one foot on the brake pedal whilst the other was holding the clutch pedal down. I was unable to stretch my left arm out enough to reach the gear lever to take it out of gear, whilst I was equally unable to reach out with my right arm to turn off the ignition! Quite frightening really as you can well imagine. Fortunately I was in a close not on a main road. Nevertheless I was still blocking the road and would eventually be preventing my neighbours from getting to work. It seemed that the more stressed I became the less my arms responded.

Well eventually some strength seeped back into my arms and I was able to guide the car very slowly over to a visitor’s parking bay and switch the engine off. But the whole stressful episode had left my arms so weak that I was unable to raise them up sufficiently to put the key in the lock of my front door, effectively locking me out of my own house for a while!

Fortunately I have a very good neighbour who was not only kind enough to park the car back on my driveway but was also able to give me a lift to work. And in the evening my boss kindly drove me home. Thank goodness for friends.

The whole frightful episode that morning had left me quite shaken as I had not experienced anything like it before. And to think that this is probably only a small foretaste of things to come. Gulp! It sends shivers down my spine just thinking about it.

I will take this as a serious warning. It would be foolhardy, reckless and downright irresponsible of me to continue driving now knowing full well that the disease has reached a point where my arms can be subject to these ‘paralysis attacks’ which deny me all control of my arms for a while. And as I’ve mentioned already this seems to be connected in some way to stress levels too. The more stressed I become the worse it seems to get.

I suspect that this little episode was closely related to all the energy I expend each morning just preparing for work. My upper arm and shoulder muscles (already quite badly atrophied) became so exhausted that they effectively shut down for a while. Obviously I now have little in the way of reserve energy and it would seem that energy replenishment now takes some time.

It’s all so frustrating. I had hoped to be able to get to the end of my working life fully mobile and maybe even get a couple of months or so of freedom to drive and visit places I’d not yet been to. Unfortunately I have fallen at the last hurdle – and so close too! Worryingly it was only four months ago that I was diagnosed although I had tests for several months prior to that, and had symptoms a few months prior to that. I wonder if this would be described as an aggressive form of the disease or is this just typical of the rate of spread? It was the one question I meant to ask the Neurologist recently and forgot.

The car is now sitting on the driveway awaiting its fate and it will sadden me to see it go. I’ve had the car since new, regularly maintained it, put much lower then average miles on it and never been let down by it. But because it is now coming up to nine years old it is worth a lot more to me then someone else – and yet it still looks new.

I’ve been driving since my college days when I was 17 (practically 30 years ago) so motoring has become an integral part of my adult life. Loosing that ability is in a strange way like loosing a part of myself – if that makes sense. Here in the industrialised West we are very much a mobile society and jumping into a car has become second nature to us all. I will miss the spontaneity of waking up on a weekend, peering through the curtains and seeing the sun shining and deciding on the spur of the moment to drive off down to the coast for a walk along the cliff tops at Lulworth, or to take a walk around the beautiful gardens at Wisley or any one of hundreds of other places. Or just simply to jump in the car and go visit family. Now my options have decreased and I will loose that door-to-door advantage that cars offer.

As a form of compensation (and bizarrely right at the moment I need it) Adult Services have (with my approval) now added me to the Hampshire County Council Disability Register. What this means is that I am now entitled to various concessions amongst which is free travel on the buses. So yesterday I applied at my local council offices for a free bus pass which I was able to use that evening to get home from work. From April the bus pass scheme goes nationwide so I will be able to use it anywhere in the country and not just in the borough. So at least I will have some way of getting around because without the car it will start to feel like my world is contracting.

I’m afraid that the disease has won this particular battle, but there will be others and it has not yet won the war. There might only be three wheels on my wagon these days but I’m still rolling along, singing a song… “those Cherokees are after me, they look mad, things look bad, but I’m singing a happy song. I’m singing a higgity, haggity, hoggety, high, my motto is never say die!” 😉

Just before I sign off I would like to wish all my dear family, friends, colleagues and fellow sufferers a very happy Easter.

Mark

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An appointment with the Consultant

I had an appointment yesterday with my Consultant Neurologist – the first since I received my diagnosis just over 4 months ago.

The purpose of the meeting was really just for him to make sure that the things he had set in motion last year were in fact happening and to find out if my symptoms had changed at all.

Well, they have and to be honest I’m quite surprised by how much. I mentioned the problems I’d been having with my hands in recent weeks (probably about a month now) and how it is becoming harder to use them for daily activities (this is in addition to my ever-weakening arms). He had me performing some resistance tests but the strength in those muscles is fading so I didn’t do too well. I’m becoming concerned at how weak my grip is and how easy it is to wear my hands out when typing.

I was able to confirm that all the various health care professionals (Occupational Therapy, Physiotherapy, Adult Services, MND Association Visitor) were all in contact with me and that the care network was in place. At present however it’s more a series of chats with these people then anything else. I’ve yet to get into the realms of care at home.

We reviewed the monthly blood tests I’d been having for the first three months. These were needed to check that the Riluzole tablets I’d been taking were having no detrimental effect on my liver. Like my GP he was satisfied that everything was normal and told me that I could now move to a 3-monthly check for the remainder of the first year and then afterwards move to an annual check.

I asked him about the lumbar puncture procedure I’d had back in January. The reason for having it was to iron out that last element of doubt. With MND there is no test to determine that you have the disease so the only way to diagnose it is to eliminate everything else. I’d already been told back in November that he was 99% certain of the diagnosis and that he really didn’t expect the lumbar puncture test to reveal anything he didn’t already know. Sure enough all the tests came back normal which would be consistent with MND so the original diagnosis still stands.

One thing that had been puzzling me since I’d started to read up on the disease and find out that there were in fact different types of MND, was which one do I have? I already knew that it was sporadic because we have no history of it in our family. Indeed we have no neurological history that I am aware of. By far the most common one is ALS (Amyotrophic Lateral Sclerosis) but I was hoping that it might turn out to be PMA (Progressive Muscular Atrophy) as it has a longer average life expectancy. But it looks like I’m going to be a Mr Average as he feels that the data he has collected on me is consistent with ALS. Well it may only have an Average life expectancy of 2-5 years but it is important to appreciate that it is only an average. People can and do live a lot longer.

I also took the opportunity to mention the Italian clinical trial involving Lithium Carbonate and Riluzole that had generated a lot of interest in the ALS community. Bold claims were being made about slowing down the progression of the disease and I wanted a professional opinion and hopefully an endorsement to try it should the claims prove to be true. I’d taken along a copy of the science report that had been published a few months ago but was rather apprehensive about mentioning the subject for fear of being thought of as just some computer geek who thinks he can order up a cure as easy as ordering a book from Amazon! I wasn’t thinking that but having a terminal illness does create a certain desire to want to live! We owe it to ourselves to explore every opportunity and this one looked too good to pass by. Anyway he’s told me that he is going to look into it.

He’s also going to make an appointment for me to have another lung test just to make sure that I am not loosing any efficiency which would indicate that the disease had spread to the breathing muscles. I don’t really expect this to present a problem because at the moment I haven’t noticed any breathing problems whatsoever and I go walking regularly. The last lung test I’d had back in October had confirmed that my lungs were in excellent shape. So let’s hope that remains true.

He said that he is going to keep an eye on me at regular intervals and has set the next appointment for July so it looks like we’ll be having about three meetings a year – that’s in addition to the monthly meetings with my GP.

Mark

Information sources

http://en.wikipedia.org/wiki/Riluzole

http://en.wikipedia.org/wiki/Lumbar_puncture

http://en.wikipedia.org/wiki/Amyotrophic_lateral_sclerosis

http://en.wikipedia.org/wiki/Progressive_muscular_atrophy

http://www.dailybulletin.com/leosstory/ci_8089973

http://alslithium.atspace.com/index.html

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2 in a 100,000

That’s the odds of getting Motor Neurone Disease.

And I have it!

To put that into perspective the odds of getting cancer at some point in your life are just 1 in 3.

Considering the vast difference in odds I find it kind of ironic that it should turn out to be MND that will most probably be the disease that ends my life. I say most probably because there are no certainties in life and I keep telling myself that even though I have MND it isn’t necessarily what will kill me. Any one of a million things can still happen that could change the course of my future just as easily as did the diagnosis back in November last year. And the reason I say its ironic is because cancer is so very strong in our family on my mother’s side. As the years passed and cancer cut deeper into our family taking away loved ones including my own mother, the probability of my being diagnosed with it increased until I became convinced in my own mind that I would suffer the same fate in later life. But it’s still not too late: I could be really unlucky, survive MND for a few years and then get diagnosed with cancer too. I think that would just about finish me off in more ways then one. Surely life won’t be that cruel to me will it?

So faced with these kind of odds just how do you deal with the news of being told that the ‘nerve beginnings’ in the brain are prematurely starting to die and that there is no known cure and that your life expectancy will be significantly short?

How do you deal with such life-crushing news and the thought of not only dying before your time but also from an unrelenting, horrific and fatal disease that will leave you unable to walk, talk, dress, wash or feed yourself as the brain gradually losses the ability to ‘talk’ to the voluntary muscle system throughout the body? To be trapped in the ultimate prison, the one you can never walk away from and the one that never gives you time off for good behaviour, to end up being 100% dependent on other people. In the most common form of the disease average life expectancy is just 2-5 years.

My world went into meltdown as suddenly the future you believe you had begins to evaporate like a dawn mist. The full force of what I was being told didn’t truly impact me at the time as I was told very little about the disease. My Neurologist felt that I already had enough information to deal with and didn’t want to overload me. I’d heard of Motor Neurone Disease but only because I knew that was what Professor Stephen Hawking has. I just knew at the time that I was being diagnosed with a terminal illness with no hope of a reprieve. It was only in the days following the diagnosis that I feverishly began to research the disease on the Internet, anxious to acquire as much information as possible and searching in vein for hope, that I began to slowly realise its true horror and the nature of the future that lay ahead of me.

Like a lot of people I guess, I had become complacent about my health. I had somehow managed to sail through the years with barely a cough or a sneeze. Taking time off work for sickness was almost unheard of, and throughout my working life of almost 32 years, the number of days off I had taken could be counted on the fingers of one hand; something I took particular pride in. Now it feels like I’ve been given 47 years of bad health all rolled into one mega-bundle to make up for it.

In those first few days after diagnosis I rode a rollercoaster of emotions. I remember driving home alone from the hospital with tears running down my face. I grieved for a future that I would never see and of growing old with family. I felt cheated by life and angry that this could be happening to me. Strangely perhaps, I did not feel shock or surprise at the diagnosis, because for some unexplained reason I had felt deep down inside for months that whatever was wrong with me was going to be a life-changing event. I’d had a similar feeling years before and unfortunately that too had turned out eventually to be true. So I have learnt to trust these ‘feelings’ or perhaps more accurately, premonitions.

Eventually I came to the conclusion that there were only two ways I was ever going to deal with this: I could either turn inwards, curl up into a ball and drown in a well of self-pity, squandering the precious time let to me, or I could turn and face it head-on and try to make the best of a bad situation and make the days I still have remaining mean something. I reminded myself that none of us on this Earth truly knows how long we have so it is pointless to worry about death. So that’s what I chose to do and since then despite a progressively worsening condition I still manage to wear a smile and not take life too seriously. They say that laughter is the best medicine – how true!

How long did I have it I wonder? According to one report I’ve read, by the time you notice muscle weakness you will have already lost 50% of the motor neurone cells. But it takes time to notice because the brain has this wonderful ability to compensate for lost neurones. But I sometimes wonder to myself is it something that I have carried with me for many years oblivious of the destruction taking place whilst the brain frantically tries to find alternative ways to communicate with the muscles?

MND is a disease without a cure at present but even in the darkest times there is always hope, I believe. It’s not medically impossible to live for many years with it but statistically it’s improbable. Thankfully research activity in recent years has increased tremendously and I feel optimistic that we will be able to come up with treatments in the not too distant future that can dramatically slow down the disease and maybe arrest it altogether. But the big question for me of course is will any of this be in time to save me given that average life expectancy is generally quite low? I live in hope.

Mark

Information sources

http://www.mndassociation.org/life_with_mnd/what_is_mnd/risk_of.html

http://www.cancerresearchuk.org/campmisc/1in3a/

http://www.mndassociation.org/life_with_mnd/what_is_mnd/types_of_mnd.html

http://news.bbc.co.uk/1/hi/health/3294703.stm

www.mndassociation.org/document.rm?id=449

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