Posted by: mads04 | April 10, 2016

Nobody said it was easy…

🎼 Nobody said it was easy,no one ever said it would be this hard…. Oh take me back to the start.🎼

Do you remember the time when you learnt to walk and talk? Or when you’re parents used to bath you, feed you, brush your teeth and hair, tie your shoelaces, put your clothes on, even wipe your peachy little bum? Do you remember when you learnt to write? No? Me neither. We don’t remember because our brain was still developing. We learnt over time to develop these skills but it didn’t really stress us out because we never knew them so it was easier to just let our mums do it for us.  We don’t really remember these times because they’re the norm to you, you do these things without thought now. One thing I’ll guarantee that you don’t remember is your first breath. 

I’m asking these questions because when you’re living with MND you gradually lose all these abilities that you take for granted. When you’re a baby you don’t care that you can’t ride a bike or write because it’s not important to you, all you want to do is eat, laugh, cry, shit and sleep. Anything else is a bonus! 

For the last 5 years I’ve been turning into a baby, I even slobber from time to time. Not the best look if I’m honest but when your mouth feels like Niagra falls there’s not much you can do about it. With MND you unlearn all the basic skills you learnt as a kid. In my head I can still do these things but physically it’s impossible. I can’t even kick a football now or a striker for that matter!!  I’ve been kicking a ball since I took my first steps so it’s a bitter pill to swallow. I can’t feed myself, dress myself, brush my own teeth, I can’t even go the karzie on my own! I watch my lad Vinny learning to play guitar bursting with pride but I’m gutted because I can’t jam a few tunes with him. I can’t even pick a guitar up now never mind strum a few chords.  

People struggle to understand me now because I can’t really talk, a bit like a baby. When I’m walking it’s like a child taking his first steps. I went to me  mates mums birthday party the other week and I was walking back to my chair a bit wobbly some fella said “You’ve had a bit too much to drink there pal.” “I wish mate.” Imagine me with a bevy in me, I’d be like bambi on ice!!. I couldn’t handle me ale at the best of times never mind whilst  fighting this bastard. 

🎼 I cannot move, my fingers are all tied in a knot. I don’t have the strength to get up and take another shot, and my best friend my doctor won’t even say how long I’ve got.🎼

Going underground. 

A question most people don’t like to hear is “What songs do you want playing at your funeral?.” Well I’ve had a lot of time to think about this. To most people it might be a bit morbid. To me and the rest of the MND community it’s a realistic conundrum. If I’m honest it changes every week. One week I’ll be in a mellow mood and it’ll be a Pink Floyd tune, the next week I’ll be a bit angry an it’ll be the Foo Fighters. MND moods? I could make a decent CD out of that. 

I’ll listen to anything from Bob Dylan to Eminem, Led Zeppelin to Stevie Wonder, Aretha Franklin to the late great Robert Johnson. I’ve been to hundreds of concert over the last 30 odd years. It’s hard to pick a favourite one. Roger Waters performing Pink Floyd’s the wall album was a highlight. The visual aspect of it was unbelievable. The Rolling Stones in Hyde park was a high energy concert. Their lead singer has definitely got the moves like Jagger! Bob Dylan at Glasgow a couple of years ago was an experience, showing even at the tender age of 71 he still held an audience in the palm of his hand. 

Anyway getting back to the tunes you want to hear whilst lying in your box. I’ve got a few requests. The Rolling Stones “Gimme shelter” is a definite, a proper rock n roll song that kicks ass. Exodus by Bob Marley. I’ve loved this song since I was 10 years old. My older brother was a huge Bob fan and he always had him blasting out of his bedroom, aswell as a load of smoke!! I was going to put Monty Pythons “Always look on the bright side of life” but it could be seen as a bit blasphemous in church!! It would’ve been funny watching the priests face as I’m carried up the aisle with Eric Idle and his mates giving it loads. There’s a few more to add but I want them to be surprises. I might  finish with the Jams number 1 from the 80’s “Going underground” just for the giggle factor. 

I think we’ll show these videos at the end to get people smiling 

Hopefully that day is a long way away. Ill keep fighting as long as I can to keep death at bay. As Blue oyster cult once sang “Don’t fear the reaper.” 

Music is a great healer.

Thanks for your continued support and please keep supporting the MND community. I’m in my sixth year living with MND, over half of those diagnosed will sadly die within two years. A scary statistic that makes me realise I’m a very lucky man.

We lost another MND warrior recently who I was on a clinical trial with. RIP Aiden, we had some laughs mate. 

Enjoy life and smile. 

To be continued…

Mark

🎼 When you’re sad and when you’re lonely and you haven’t got a friend. Just remember that death is not the end. When you’re standing on the cross-roads that you cannot comprehend. Just remember that death is not the end. And all your dreams have vanished And you don’t know what’s up the bend. Just remember that death is not the end.🎼 

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Responses

  1. God Bless you Mark. I think of you often my ‘old’ friend. You are an inspiration. Love to you and yours xx

  2. It’s good to read the experiences of others living with this shitty disease. Thanks for continuing to blog Mark. Good luck with the fight.

  3. “Mindset changes the days you have, not the number of days you have.” Keep fighting Mark, you are a true inspiration.

  4. I have only just discovered your blog. My best friend was diagnosed with MND 4 months ago and has been given 6 months.
    She is only 39;-(
    She has deteriorated rapidly unfortunately.
    It is a cruel disease and I have enjoyed reading your blog and have read it to Kelly.
    I am from Liverpool and live down South.(some of us have to….:-0

    When I am next home, I would love to meet you to exchange stories on how we cope living with MND.
    You are an inspiration Mark xxx


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