Posts

01/11/2026 - '​Finding My Voice Again: My 6-Month MND Blog Update' by David

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​It's been a while since I last updated the blog. There are many reasons for my absence, leading to me losing my writing mojo. ​Alice and I have had a few disappointing months, and we've both suffered low moods as a consequence. ​Having to have hard conversations with my family, having to accept carers into our house, and the deterioration in my symptoms have all impacted our lives socially and mentally. ​The consequence of this was that I just didn't feel like documenting anything. ​Further deterioration in my limb strength means that I have gone from still walking in July last year, to using a transfer aid around the house in May this year, and now I am being hoisted in and out of bed and onto the toilet. Cramps and numbness in my hands, and loss of strength in my arms mean that the only two things that I can still do are feeding myself and brushing my teeth, and both of those are becoming harder to do. ​Unfortunately, my legs weakening has impacted both ...

01/10/2026 - '4 months since our last update' by Alice

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The last post in this blog was the beginning of June, so it has been four months since we last updated you all.  I wrote the last post as David was feeling jaded about it, and unfortunately that hasn't changed.  I was also a bit ‘meh’ about it, but I have been watching Kevin Sinfield complete his final challenge and considered how he is still out there raising funds and awareness for the MND community and this is what we set out to do too when David was first diagnosed.  We have a large following and readers all over the globe and whilst we don’t owe it to anyone, we did always say we wanted to document this journey.  The consequence of leaving it this long though, is that this blog is going to feel long and probably quite gloomy.  I have started it off with an incident of me ‘dropping’ David on the floor this week, and unfortunately, it doesn’t really get much better after. The blog was once an outlet, but then David began to feel it had become repe...

03/06/2026 - 'Alice's ramblings' by Alice

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David has lost his writing mojo.  Every time I ask him about the blog, he just says he hasn’t felt like putting it together, but I know lots of you follow our journey, so I thought I’d take to the reins for this update to give David some time off. We have had a few big events happen in our lives recently – having carers start, our new powered transfer aid, the Leeds marathon and going on a cruise.  Let’s start with the carers.  This all started quite unexpectedly to be honest.  I had been trying to juggle caring for David while still working at the hospital and taking care of the house.  In order to do this, I was getting up early myself and then getting David up.  This involved transferring from bed to bathroom for morning care, dressing, transferring into the living room, doing food prep for the day and then setting up him with breakfast and everything he needed for the day before setting off to work at 10am for 6 hours.  After work was usually shopp...