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.
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.
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.
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.
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.
Today is Global MND Awareness Day. It deserves a whole week or Month but here we are and I appreciate you taking the time to read this post. It’s a bit of a cop out because if you follow me on Twitter you will have seen the content already but it is important that I share this again far and wide.
If you want to follow me on Twitter… Welcome.
I started writing this blog 6 months ago with the intention of writing regularly and making life easier for myself. I failed miserably and for that I apologise. The key thing is to say that 6 months with MND is a long time and so much can and has happened. Crucially I passed my Wheelchair test so I can be let loose on the World and was given a Smartbox communication tablet which quite frankly has revolutionised my life. In fact this blog was written and edited entirely with my eyes !
34 teams of 4 gathered at Brickhampton Golf Complex for the third annual Pain in the ALS Golf Day last Friday. Raising money for the Motor Neurone Disease Association (MND) and for Mike Crisp and his family. Former Worcester and Cheltenham rugby player Crisp, who was diagnosed with the terminal illness in 2016, set up the golf day 3 years ago as a way to raise money for the charity and raise awareness of MND. The event has gone from strength to strength and has a real mix of golfing abilities, from first time golfers to former Ryder Cup players (Peter Baker).
