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.

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On the February the 6th 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.

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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.

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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

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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.

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34 thoughts on “My Dad and Motor Neurone Disease

  1. I will always remember very fondly the very vociferous ‘discussions’ covering all sorts of subjects – which Keith and I often had (sometimes well in to the early hours of the morning). When in fact he had only come around my flat to pick up Yvonne after she and I had been to our Batik or Yoga classes. He was a bright spark and we nearly always ended up laughing. God Bless you and keep you, wherever that may be ❤

  2. Oh Damien, that must have been incredibly hard to write, my Mother was recently diagnosed with Parkinsons, so I totally know what you must have gone through watching/living the rapid decline.
    I’m sure the sun is shining – and he must have been very proud of you.

    – off to sign now x

  3. so true……your dad was incrediably proud of you and your brother I think there wasnt a time when he was in the club that he wasnt telling me about your lives and achievements he would be so proud that you are highlighting the plight of this terrible illness well done x x

  4. Very moving!! My dad has MND and understand completely-so so hard for any family going through this! Big hugs being sent to you all x

  5. My nan was diagnosed with MND and died within 12 months in those 12 months she suffered greatly not only with the disease but with the frustration of nolonger being the independant fun loving social lady she had always been……. please spread the word to get as many people to sign.

    x

  6. My husband has MND, and I echo everything you say, He is a very proud and independent man, and it is torture for him to have to rely on me to do everything for him. He doesn’t want to live the life he is, and it is so hard for me to hear him say he wants to die.

  7. damien i also lost my dad to mnd after been told 7weeks earlie. my father was 67 and hoping to do things him and mom had planned , its been 3years and we still are coming to terms . we do what we can for mnd and spreading the word will always be on top of my list me and mom every june do a sponsored walk around the chase with others who support mnd , keep spreading the word xx

  8. My husband was 49 when diagnosed with MND and he died just 22 months later. I found this story so touching and it brought back so many memories. Our children were 22, 20 and 6 years old

  9. Wow. my mum has mnd and like you say its robbing her i could not write somrthing like this but i know how you feel. mnd is a ba#%&*d and more shoukd be done about it. all the best braf

  10. Shed a tear reading this my dad has also got Mnd and it breaks my heart watching him knowing that we can’t do a thing for him

  11. My husband was diagnosed in June 2011 and now is near the end of his life. MND has robbed my children of their dad and sentenced them to watch him disappear before their eyes. We had great plans for our retirement now I face the future alone.

  12. I don’t know how you wrote such a lovely blog. It must have torn you and your family apart in the later stages. I would hate anyone to write one like that for me never mind write one myself. Someone I met through golf a few years ago died of MND and it was so sad to see him decline. His name was Don Revie. I wish you all the best.

  13. I feel incredibly touched by all of the kind comments, my heart really goes out to all of you who have been affected by MND. x

  14. Reading about Damien’s dad,his personality mirrors exactly that of my husband who died of MND in May.Chris,too,was a perfectionist and had Asperger’s which made life difficult at the best of times and when the bulbar onset kicked in it became awful-especially for him with the inability to speak,feed and the constant dribbling.The minute we were told the diagnoses I knew this was a death sentence,Cris fell apart at the seems,it is awful to watch a strong,keen sportsman and quick brain do this.He was 66 when he died

    • Sorry, I forgot to say that Chris and I were overcome by the amount of support he received.At the Neuro unit in Southampton he had a first-class consultant in Dr.Ashwin Pinto who had a superb team working with him.The local branch of the MNDA and nationally were faultless in their help and support.His nurse took the time to attend his funeral and I implore everyone to sign up to the charter.

  15. how sad for all of you,its something our family is going through at the moment ,my son andy,only 28,was diagnosed in may,he has turned his back on conventional medicine,and is trying coconut oil,vast amounts of it,it seems as though there is no support at all after you have been diagnosed for the patient or their families,tou just are told the news and forgotton about,i hope you can find some kind of peace now,

    • Very sad that you have had no support.I suppose it depends on the postcode because we were inundated with support.Try your local MNDA association and the National MNDA.There should be plenty of help out thereif you look for it.Don’tgive up

    • When my husband was diagnosed at 49 at first we thought we were forgotten, but I contacted the local branch of the MNDA. They were very helpful and we attended many meetings and got support. Not just for my husband but also for the rest of the family including my then 4 year old son.

  16. We recently lost my Mum to MND, she was diagnosed in February 2012 and was gone by 2 December. Words cannot describe the agony of watching someone you love so much have all their dignity and independence taken from them. As a family we are left heartbroken and to try and come to terms with what this disease did to her. It was really brave of you to write about your Dad, the MND charter is so important as there is still such a lack of understanding about this disease.

  17. I have just read your blog and my heart goes out to you. My dad is 65 years old and was told last week he has MND. As you can understand we was shocked to receive such bad news when we was not expecting anything like that. My dad lives alone and has just recovered from 6 weeks in intensive care suffering from pneumonia. I was very shocked that the consultant was sure that my dad has MND & don’t really know what I am to do next. His doctor has not received any information and we are all a bit numb. My dad lives alone in a first floor house conversion and the stairs are very steep. Can we (me and my sister) get any help? Please give me any information that will help me right now as no one understands what we are going through. Thank you

    • Hi Clare,

      I am so sorry to hear of your sad news. Your Dad will now be able to now claim disability living allowance which will help towards home modification. I am not really an expect on this stuff but our local hospice were brilliant my Dad had a physio who came to see him every week and was really amazing. My Dad actually really liked her and he hated people helping him. I suppose I would suggest speaking to the Elenor Hospice they will be able to advise you on practical support but give your Dad and you and your sister emotional support as well.

      I hope this helps in a tiny way. Damien

  18. Hi Damien
    I’m in tears here reading about your dad & also crying for mine, my dad just died on the 30/3/13, so heart broken, he was told on the 15/3 that he had motor neuron, that was his biggest fear, he didn’t want it & could never have lived with it, he was always so active & a chef for over 40 yrs. he was 61 when he passed, 15 days after being diagnosed. Doctors believe he only had it 9 months it just affected his legs & breathing he could still talk up till the day before he passed, he had an agressive strain that took him quick, thinking of you & your family at this time . lynnhrty@yahoo.ie

    • Hi Lynn, My thoughts are with you at this time. I know it isn’t much comfort but at least he didn’t have to suffer for long and battle for his dignity. Sorry my blog made you cry, I was in tears writing it. x

    • hi lynn reading your blog just brings it home to you how helpless we all are,to watch your loved ones just getting worse,our son andy is 1 and a half years into it, keeping it at bay with deanna,s protocol and coconut oil,dont know how long before a cure comes,we can only all wait

  19. Pingback: Vegan Runner | London Marathon

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