Day #648: An Ode to Diazepam

Today, a poem in honour of one of my many Marvellous Medicines: Diazepam, otherwise known as Valium (or Simon’s chill pills). I dedicate this silly verse to my wonderful friend Darren, who is running the Brighton marathon on Sunday to raise money for the MND Association. He’s so close to his target. Please spare a … Read more

Day #644: Perspective

Picture of a shoe with ambiguous colouring

What colour is the shoe pictured above? With complete confidence, I’d say it is grey with mint-green coloured laces. After all, what could be simpler than describing the colour of an everyday object. With all of the complex and contentious things to argue about out right now, surely on this matter of shoe colour we … Read more

Day #608 – Trialling times

Why hello there – it’s been a while. When I started this blog, I intended to write a post every week or two.  As you can see, I’m smashing that target. My recent radio silence is not due to a lack of ideas or disinterest in the blog.   I still very much enjoy writing to you.  The problem … Read more

Day #489: The 1,000 Days Podcast (Episode 2)

For those of you who liked the first one – here’s the next episode of the 1,000 Days Podcast. In this 2nd episode, we actually do the thing we were meant to do in the 1st episode: talk through my Desert Island Discs. I can’t include all the music in one audio file without breaking … Read more

Day #486: The 1,000 Days Podcast (Episode 1)

One of the silver linings of going through a terrible life event – such as getting diagnosed with Motor Neurone Disease – is that truly remarkable people show up out of nowhere to help you out. My friend Mark is one of these guys. We met a couple of years ago when our kids started … Read more

Day #461: A trek to cure MND

A few years ago, I worked for BT in Bristol and made some wonderful friends during my time there. Since my diagnosis they have rallied around me and want to help in any way they can. Next week, on 3rd October, an incredible crew of 8 former colleagues are going to trek all day, come … Read more

Day #451: How did Hawking live so long?

Stephen Hawking was an exceptional fella.   Aside from dreaming up theories on black hole radiation, he also managed to live for 55 years with a condition that snuffs most people within 3. How did he do it?   Well, I’m here to tell you. I’m here to tell you that nobody really knows.    However, in the … Read more

Day #411: Miserere mei, Deus

a pair of headphones

This is a short post. I haven’t written in a while. As MND slowly beats the shit out of me, it’s harder to summon the energy to do it. I take solace in listening to music. I’ve always loved music. Of all the various art forms, music hits me the hardest – right in the … Read more

Day #388: My Digital Voice

A robot speaking

I have something amazing to show you today. Before I do, I want to say a huge thank you to everyone who donated to our fundraising campaign. Last week, it hit its target. This is down to the heartwarming generosity of hundreds of people – many of whom know us well – but many we’ve … Read more

Day #365: One Year Down

one year in days, weeks and months

Well, I made it. I’m officially in the top 66% of survival stats for people with Motor Neurone Disease, having conspicuously not died during the first year. I wonder if the King will send me a badge? I might order this one just in case he’s too busy fighting his own life threatening illness. I’d … Read more