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.


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