I HAVE MOTOR NEURONE DISEASE

ABOUT ME

I’m Mike, aged 42, I live with my amazing partner Becky and the meaning of my life, my son Freddie. I used to play rugby, I now prefer golf. I like going on warm holidays, prefer a pool to a beach (unless the sand is white). I’m self-employed and my business is in good shape but I’m always thinking of ways to wind it down. I have Motor Neurone Disease / ALS but I am going to fight like f**k against it.

ABOUT MY CHALLENGE

I was officially diagnosed on October 4th 2016 although the ‘start date’ has been put back to March 2016. Realistically looking back I started to notice weakness back in summer 2014. My diagnosis came early  which is lucky I guess and it all started with a twitch in my shoulder that wouldn’t budge.

RAISING MONEY – RAISING AWARENESS

There is unlikely to ever be a cure for ALS but specialists are convinced they will be able to manage it and extend the life expectancy considerably. They can only do that with research and that needs funding. I’m trying to raise £25,000 towards this. I’ll be posting details soon.

ABOUT THIS BLOG

I wanted to start it, partly as a bit of personal therapy, and to form some sort of digital legacy but mainly so that others with this disease can compare an contrast my symptoms and experiences. I know when I was first diagnosed I wanted to know what was going to happen to me and how quickly – so if you have MND and are reading this, please feel free to get in touch… (we’re known as PALS People with ALS).

Now, even though this might upset my mum, this blog will contain some swearing, not a lot, but when your time is short and something pisses me off why should I hold back – I won’t have the advantage of being a miserable old man so I’m getting it in early!

This blog won’t contain much science, there are better sources for that and the MNDA website is outstanding for information, so this will be about my progress with this disease, topics of interest (like assisted death), latest gadgets, the difficulties I have, so when you’re feeling hard done by because someone cut you up at the lights or ate the last piece of pizza, it might help you regain some perspective.

MND / ALS – THE BASICS

The Motor Neurone Disease Association website is an outstanding source of information and I have provided a couple of links to make it easy. The explanation below is taken from their website…

MND / ALS is a progressive neurodegenerative disease that attacks the upper and lower motor neurones.

Degeneration of the motor neurones leads to weakness and wasting of muscles, causing increasing loss of mobility in the limbs, and difficulties with speech, swallowing and breathing.

The muscles first affected tend to be those in the hands, feet and mouth, dependent on which type of the disease you are diagnosed with.

MND / ALS Facts & Figures

Risk of developing MND is up to 1 in 300
People diagnosed every day with MND
Adults have MND in the UK at any one time
50% of people with with MND die within 3 years of diagnosis

From the Blog

Spring madness

Remember when I said I wouldn’t leave it so long to write, well that was a load of rubbish because it’s been over two months! Even my dad has been telling me I’m lazy so here goes. Grab a seat, get comfy, as this might take a while, the last three months have been crazy.

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New Year, New York, New House, New Car

The morning I started writing this blog was one filled with mixed emotions. Firstly happiness as Freddie had slept in till 7.45 and then we had such fun playing with his cars and toys. But then for the first time in a while it hit me as to how a fucking unfair MND is and that my ability to play with my son decreases every week. And while I try to treasure every moment with him, life, work and other everyday crap often gets in the way. That said, it’s easy to forget my own worries, when he bumped his head and asked me for a cuddle. I’ll take that any day of the week.

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Unexpected adventures

Its been a quiet month / 6 Weeks (by my standards at least!) although as I sit and type I realise it has been full of little bits and some unexpected adventures. Winter is tough for me. Shorts are no longer an option (because I’m not a postman) and pulling up trousers is hard on my own, tucking in shirts.. impossible, jumpers get stuck around my chest and I can’t put gloves on by myself. I’ve been outside my hands get really cold and useless which makes emergency toilet trips a 2 man job! So if you see me struggling, please offer your help. Other than that, I quite like winter and Christmas with Freddie this year will be magical.
Cover photo by Rob Wheatman

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