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
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
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
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
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
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
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
My lovely Occupational Therapist (OT) came over for a visit yesterday. She advises us on adaptations we need for our house, such as accessible bathrooms and ceiling mounted hoists that will help me flop gracefully between pieces of furniture in the future. She’s moving on to a new role, so this would be the last … Read more
Just a poem today, folks. Rob Burrow, a top-flight Rugly Leauge player who was diagnosed with Motor Neurone Disease in 2019, sadly died yesterday. He was 41 years old. Together with his friend Kevin Sinfield, Rob raised millions of pounds for clinical research and patient support services. He waved the flag for all of us … Read more
Last week, I stepped into a Time Machine to visit my MP. Off I zipped, back to the Victorian age to meet the (in?)famous Sir Jacob Rees-Mogg; everyone’s favourite MP from the 19th century. He just so happens to represent us here in Northeast Somerset. Before you ask, yes, we do have electricity in the … Read more