My Dad and Motor Neurone Disease

This blog is about my Dad and his battle with Motor Neurone Disease. It is the hardest thing I have ever written and I have shared photos I find tough to look at. The reason for the blog is i want to tell you about a new campaign by The Motor Neurone Disease Association to get you and your MP to sign the Motor Neurone Disease Charter. The charter calls for those suffering with the disease and their families to be provided with the support they need.

On the February the 6^th 2011 my Dad, Keith Clarkson died from MND he was aged 56.

I have seen close up how devastating MND is; for anyone who doesn’t know MND is a muscle wasting condition which robs people of the ability to walk, talk, eat and finally breathe, there is no known cause or cure. The experience of watching my Dad trying desperately to cling onto his dignity was heart breaking for my Mum, brother and I.  On the day before he died we got him a small whiteboard to write down what he wanted to say; as we were no longer able to understand his speech. Losing that last scrap of dignity probably was why he finally gave in and never woke up.

This blog is from the heart and my honestly my Dad was a complicated person and he certainly wasn’t one of life’s natural communicators. Like many people with a high IQ he had a borderline obsessive personality and could be relentless in his pursuit to make you share his passions. This coupled with an inability to listen to your concerns at times made him difficult. And growing up I found talking to my Dad incredibly hard, he often seemed aloof and uninterested, however as we grew older we both learnt to understand each other and formed a strong relationship.

But despite all of his complicated personality traits he was a kind and caring person who would always go miles out of his way to help his friends. He was also a perfectionist who took incredible pride in his appearance and his work. Undoubtedly partly borne out of growing up in a poor family and his short spell in the army. I can still remember him constantly commenting on dirty state of my school shoes and football boots.

I suppose what I am trying to say is my Dad was a proud person. And MND tried desperately to take away his dignity.  My Dad received a late diagnosis in October 2009, MND is notoriously hard to detect and half of people diagnosed die within 14 months of being told they have the disease; as was to be the case with my Dad. We had known that something was wrong with him for a little while. In the years leading to his diagnosis he had lots of small muscle operations in his shoulder and wrists. We believed these were the result of motorcycle accidents or RSI from working on computers.  And when he gradually started losing weight and his speech had become less clear, I started to think he may have Parkinson’s disease.

From the moment of his diagnosis my Dad was never the same person, he wore what I would describe as a veil of death. Getting him to laugh or smile became a near impossible task as he quickly became frail and weak from the disease. On our last holiday to Greece in Thassos a place my Dad visited over 10 times in the last decade of his life. He suffered terrible sickness and immediately after our return had a 6-week spell in hospital and a food tube being fitted to his stomach.

The following 6 months of his life were unbearable for us to watch, so god know how he felt. He was still working doing IT consultancy from home in a desperate attempt to make money to look after my Mum once he had gone. I remember sitting there as he repeated a word 5 times desperately trying to get the person on the other end of the phone to understand him. I sat there watching him knowing how much it was killing him inside. He refused my offer to translate for him.  It turns out that my Dad had probably been suffering with MND for perhaps as long as 10 years before he was finally diagnosed with the illness.

My Dad regularly talked about selling up and moving to Greece, I often think what the last decade of his life could have looked like if he only knew he had MND and was dying. He could have been in Greece doing the things he loved, swimming, riding bikes and drinking Ouzo. But instead I will forever remember the last months of my Dads life in a different way, just slowly fading away.

This is why I urge you to sign the MND charter only 5000 people have so far in the whole of UK which is tiny amount. And the MNDA have created a letter you can simply email to MP urging them to support the Charter. If enough people sign the charter hopefully in the future those diagnosed with MND can get the information and support they need to ensure their last days are the best they possibly can be.

Take care Dad and wherever you are I hope the sun is shining.

Lots of love,

Damien

Last picture taken of my Dad

Here is the five point MND Charter:

1. People with MND have the right to an early diagnosis and information

2. People with MND have the right to access quality care and treatments

3. People with MND have the right to be treated as individuals and with dignity and respect

4. People with MND have the right to maximise their quality of life

5. Carers of people with MND have the right to be valued, respected, listened to and well-supported.