Posts

03/05/2026 - 'We've hit an MND milestone' by David

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Life for all of us, is a mixture of highs and lows, the ebb and flow of the tide, the crunchy and the smooth of the peanut butter, and living with Motor Neurone Disease is no different. In the last few weeks, I have been to two football matches, one gig, one gallery exhibition, been on the radio, had a cut throat shave, laughed with friends, scoffed a vegan roast dinner buffet, and enjoyed the cherry blossom and the spring sunshine. Photos incoming!! I've also had a disappointing neuro appointment, lost a fellow MND sufferer, had strangers look at my bottom every day, spoken to a dietician about a bowel regime, and done a poo in my pants.  Alice has had a respite night in a hotel, run 32k in training for the Leeds marathon, stretched and relaxed at yoga, also been on the radio, also had a disappointing neuro appointment, but as far as I know, hasn't also done a poo in her pants.  Our three monthly appointm...

06/04/2026 - 'Falling Stars' by David

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I have been strangely out of sorts for more than four weeks now. Less than the conflict in Iran, but longer than the day Dave Gilmore's black strat sold for $14.5 million and Kurt Cobain's Fender Mustang sold for $6.9 million at auction. Weirdly, I have no idea what is wrong with me. It started throaty, with blocked ears and a productive cough, so I told Alice I had catarrh. She just laughed at me saying that no-one calls it that anymore. Apparently the term catarrh is out of fashion these days.  Unfortunately, this all started on the week leading up to my 60th birthday weekend so I dosed myself up for a party on the Saturday and also for a two night break in London. Despite asking for no presents, I was inundated with birthday gifts so thank you to all my family and friends for the socks, t-shirts, chocolate, a lovely hand painted plate, tickets to a Van Gogh experience, the Mayflower theatre and cinema voucher, a Derby County shirt, a voucher for cocktails, a box of cakes, a ...

15/03/2026 - 'Celebrating 60' - by David

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My three monthly respiratory appointment at the hospital recently went very well. I wore a saturation probe on my finger the night before and handed it in for analysis when we arrived. The respiratory physio Steph, and student physio Phoebe tested my sniff and cough strength and took a blood gas sample, all of which came back with good results. However, I had to tell the consultant Dr Jackson, that I have been waking in the night, having to catch my breath and that I sometimes wake with a headache. Alice also said that she can hear that I have sleep apnoea during the night. All of these things, and my constant yawning during the day, are typical symptoms of CO2 retention. As my respiratory muscles weaken, I can't fully fill or empty my lungs, which in turn lowers my oxygen saturation, and raises my heart rate. Dr Jackson said the results of the probe backed this up and although my breathing was not concerning at the moment, it might be an idea to have a think about trying non invas...