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