Motor Neurone Disease – A Personal Reflection

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Some of you know that this time last year I lost my Dad to a rare form of Motor Neurone Disease (MND). Well, people get old, he was 78, and there is an inevitability about death from the moment we’re born but that doesn’t make it any easier. It was made all the harder though watching someone you know and love deteriorate over a relatively short period of time.

My Dad had been retired for over twenty years when he and my Mum finally decided to move up near to me in 2014. They sold their house relatively quickly – it went on the market on a Friday and they accepted an offer for the asking price on the Monday. We had felt it would be simpler all round if they sold their house first and moved in with me so they could in effect operate as cash buyers. It took seven weeks for them to exchange and move out of mine, and I must say I waved them off to their new home – quite literally around the corner – with a tear in my eye, overjoyed at getting my independence back but that’s another story.

He always enjoyed a gentle stroll each day to collect his paper and keep himself active. He was a bit of a worry guts to be honest, he had acquired a blood pressure meter a few years before and had become quite adept at taking numerous readings at any one time and discarding the first and last as not being representative and averaging out the others. He didn’t seem to realise that the complexity of this whole process seemed to raise his blood pressure, bless him. But his daily stroll and a chat with whomever he bumped into certainly did him the world of good.

It was probably just after they moved up when he confided that he was struggling with his walking and getting tired too quickly, and I was forced to point out the inevitable about old age and taking things a little slower so as not to knock himself out. But worry guts that he was, he took himself off to the GP who pretty much said what I had but deep down my Dad knew something wasn’t right and kept plugging away at them.

I suppose the first time I realised something was wrong was in late-June 2015 when my Mum had gone away with one of my sisters and my Dad moved in with me for the weekend as he wasn’t comfortable being on his own. Well this was the bloke who once offered to make me a cup of tea and was found ten minutes later in the kitchen with a kettle, mug, and a tea-bag, and no real idea what he was meant to do next – yet another story! We went into Liverpool to see a Saturday matinee at the Playhouse (The Hudsucker Proxy if you really want to know) and as we walked back to the car park, chatting about the performance, I looked round and, well, he wasn’t there. He’d hit the deck. With the assistance of some kind people in a nearby pub – The Fall Well: you can’t escape the irony – we got him back up and on we went. He admitted this had happened a few times, he got no warning as his ankles just went on him, although he had got quite adept at falling down without hurting himself in the process.

Off his own bat he invested in a Zimmer frame, followed by a roller-walker, and they even went and installed a stair-lift, all with the purpose of making life that little bit easier to manage. By now he had been referred to Aintree Hospital and was having various tests undertaken – Aintree has one of Europe’s leading department’s specialising in the effect of neurological conditions (it grew out of assisting motor racing drivers suffering from head injuries) so he was in the right place.

In November 2015, I took one of the worst phone calls I have ever received: he had been given a diagnosis of MND, a rare form, as it is a disease that doesn’t usually strike in the over-fifties. What made the call worse though was he was crying. There’s nothing worse than someone you love crying and you can do nothing about it. It’s even more poignant when it’s one of your parents. The circle was fully turned.

The hospital provided us with a lot of information, which we all read avidly but the problem with MND is that it covers a multitude of neurological conditions that are not that well known or understood. Reading a list of symptoms at the back of a booklet to work out what life expectancy bracket your father falls into – without wanting to wish it up or down – is an interesting experience. As I saw it, he fell into the 5- to 10-year bracket. For a then 77-year old you’d have to say that wasn’t bad going. This was reinforced by him being selected for a drug trial programme which was based on a minimum life expectancy of 5-years for monitoring purposes. It wasn’t much but you will grab at anything that offers hope.

Christmas 2015 was challenging – the whole family descended and everyone was trying to be upbeat without stating the bleeding obvious, whilst he mainly sat and chatted and nodded off. He was beginning to struggle – even with basic physio exercises – as his muscles degenerated. I took almost daily calls because he had fallen over and couldn’t get himself back up. No problem, I was always happy to help but when he was lying naked on the shower floor my heart really went out to him as it was more than his clothes that were stripped from him.

My Mum – a retired nurse – was amazing as she switched into care-mode but even she had a safety valve that needed releasing every now and again, and eventually as he became confined to bed, she agreed to carers coming in to help each morning and evening. And through all of this he stayed upbeat, cheered by the antics of his grandchildren as he encouraged them to misbehave – one way to get your own back on your children.

When the UEFA European Championships came on television it was quite uplifting for him as – unable to feed himself, having to be washed and changed, and with his voice starting to go as his facial muscles also failed – it gave him something to escape into. I always remember one of my sisters telling him she was about to go home and he was quite disinterested, waving her away. What’s up, she enquired. He motioned towards the television set in the corner: I’m watching this, he said – it was England vs Wales. If you didn’t laugh you’d cry.

With a future that would have seen his active brain locked into the shell of a non-functioning body and with no means of communicating – think Stephen Hawkins without the computer speak – he went into hospital for some further tests. They always say if you want to catch a bug, go into hospital and so it was with my Dad. He caught pneumonia – the old man’s disease – and without the physical strength to fight it, he passed away soon afterwards, in his sleep, albeit with a contented smile on his face: he looked as if he was going to jump up at any moment and say ‘surprise!’ The real blessing was that he was no longer suffering and would not go through any further humiliation. Married for over fifty years, it’s been some adjustment for my Mum, one she goes through every day but she’s strong.

MND – it’s a real bastard of a disease. You fight hard just to try and stand still and even then, it’s a losing battle. It’s only a matter of time. There’s some fantastic people working in the field and many remarkably brave people going through it and in their struggle helping pioneer slow advances in medical understanding that may one day see this neurological breakdown stopped or even reversed.

We weren’t the closest father and son – we had some real run-ins in our day – but I have some wonderful memories of the man as a husband, father, grandfather, and friend to many. And his calm resolve in those last few months? Well that sort of makes him a hero.

For further information on MND, available support, or to donate then please go to https://www.mndassociation.org/

© Mark Davoren 2017

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