I have entered a new phase of my life with MND. I’ve now ‘had it’ for 2yrs 9 months. I’m certainly not early stage and I’m not advanced stage either but I feel like I am in the middle stage, the stage where shit has started to get real. Don’t get me wrong, I know it gets a whole lot worse, but a number of things have declined over the last 6 months. I continue to try and make the most of life and my bucketlist slowly keeps going but I’m acutely aware that my happy-go-lucky adventures are over. Every footstep takes careful planning.
I HAVE MOTOR NEURONE DISEASE
...also known as Amyotrophic Lateral Sclerosis (ALS)
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.
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
From the Blog
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.
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.