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

​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 our assisted running and overnight stays in hotel.

Alice can no longer get me into the car or my running buggy alone, so we are at the mercy of friends who aren't always available. In a hotel room, we would now need some sort of transfer aid, so our faithful Premier Inn "purple palace" and their accessible rooms, which have been invaluable to us over the last three years, are no longer an option. We will now be looking for hotels with an electric bed and a hoist.

​Tiredness due to CO2 retention, and the emergence of a cough to allow me to swallow, have further brought us down, and a new symptom in the form of a crackle from my lungs on inhalation has emerged recently. So I probably have some sort of accumulation of secretions as well. I've had my flu jab but a chest infection is more of a worry now than it's ever been before. 

I've also had the results of my CT scan - you may recall I had been passing stones and a couple were quite large. I had been expecting to hear I had kidney stones but my doctor assured me my kidneys were clear. Not such good news for my bladder though which apparently has 'loads' of stones; the largest measuring nearly 2cm and is too big to pass naturally. I'm now waiting to see the urology team to find out how they can be treated but it looks like it may involve a general anaesthetic and for me, that will come with some risks but looks like they're also too risky to leave. I'll report back when I've seen the doc.

​So as you can see, it has been a testing time for us both.

​If Alice hadn't intervened and written the last blog, I may have stayed silent, but the unbelievable response to that post—and also to my Facebook post regarding having to accept evening care—was truly humbling. 800 reads on Alice's last blog entry and over 400 likes on the Facebook post really did make us realise how many friends we have.

​So thank you to everyone who has continued to ask how we have been over the past few months. Despite my woes, I have to realise that I'm actually doing much better than I expected to be doing when I was first diagnosed in 2023.

​Mentally, though, things are tough negotiating our way through a terminal illness. It may sound strange, but after hearing of many MND sufferers who were diagnosed after me having passed away, it actually made me feel guilty about saying how well I was doing. I'm very grateful that I'm still eating and breathing three years after my diagnosis, but I'm acutely aware that many people's journeys are sadly far shorter.

​Very sadly, I have to report that two of my friends have also been diagnosed with motor neurone disease recently. This seems unbelievable, bearing in mind that fewer than 10 people per 100,000 have MND in the UK, and I really couldn't believe that two people who I have been close to for many years are going through the same devastating journey as I am. Alice and I have sent our love to them and will be there to advise them once they have navigated the emotional upheaval that we remember going through in the first few months after diagnosis.

​Onto the good stuff: I have had a trip to Portsmouth Dockyard with my brother to see HMS Victory and the Mary Rose, a trip to the theatre with my daughters to see Moulin Rouge!, and my mum and my sister have been over to visit me a couple of times.

​I have also been to the Southampton City Art Gallery on two occasions in search of an L. S. Lowry painting of the floating bridge that used to carry passengers across the River Itchen before the bridge was built. Lowry visited Southampton twice and produced two paintings of the chain ferry, one of which is held by the gallery. Their collection is so big that even though I have seen a Turner, a Monet, and a sculpture by Rodin among many others, I have yet to find the Lowry.

Because Alice can no longer get me in the car by herself, we caught the bus to parkrun a couple of times and I completed the course in my zippy chair. I'm limited to it's maximum speed but I did improve on my time the second week!

​The evening carers come at seven o'clock, so I'm getting used to going to bed early in the evening, but it actually works out quite well. They put me on my back and I watch the telly on my phone while Alice is in the living room watching her telly. Before she goes up to bed, she comes and turns me over onto my left side and puts my CPAP mask on, and then I'm fine until the morning when she turns me over onto my right side before she leaves for work. I then have a snooze until the carers come to get me up, shave and shower me, hoist me into my recliner chair, and give me my breakfast.

​Alice and I would like to thank our lovely friends for continuing to raise money in our names for MND charities. In September, Daisy, the 16-year-old daughter of one of our friends, ran the Chichester 12k in her MNDA top and raised £419! Thank you also to the three people who have taken on the 50-mile dog walk in October for the MNDA: Kelsie walked Josie, Alex walked Maddie, and Natalie walked Anton Du Bark, raising nearly £400 between them.  

Looking ahead, my friend Mave has signed up for 5,000 squats in November and today did her first 167!

And I got a very nice present in the post from my wife - a My Name'5 Doddie Foundation hoodie which has been keeping me warm. Thanks Alice!

I also received a lovely gift from our friend Dean who had been to a China Crisis gig. He stayed on after and had the band sign a record to 'DJ Tintin' for me - a really special present. Thank you Dean. 

And finally, I received a card and gift in the post from a VR called Charlotte. We met at the start line of Southampton marathon back in 2019 and I know she thinks of me often. She had an 'MND can get in the sea' bracelet made for me to add to my collection, taking the total to 10!

One of our running friends sent us a message the other week saying they had won £50 on the Premium Bonds and asked if there was anything we needed as she was happy for us to use her winnings. What a lovely thing for her to put us so close to her heart that she would offer to do that. Of course, we said no, and that she should treat herself to something nice.

​Just a quick note about our cat, Teddy. He continues to delight and frustrate us with his incorrigible and belligerent behaviour, and although we have previously said how naughty he can be, he has actually been on very good behaviour recently. He has only brought in one rodent in the last three weeks, and he has also been more tolerant of strangers. He hasn't bitten the carers once... so far.

​So, in conclusion, life for us is a mixture of ups and downs, as of course it is for everybody reading this blog, so we are continuing to make the best of what we have been dealt. But the fact that I am still on no medication three years in, and that I'm still eating well and gaining rather than losing weight, gives me hope that there are still some good days ahead.

Did you watch the Kevin Sinfield documentary ('Thank you Sir Kev') on the BBC last week? I was laying in bed watching it and his relationship with Rob just got me and I was in floods of tears. I had to call Alice from the front room to ask for a tissue as I was sobbing my heart out. Having met Sir Kev twice, what you see on the screen is truly what he's like in real life - just a humble man, honouring his friendship with Rob. If you've not watched it, please do. 

I know our cruising friends David and Susan watched it as they made a donation to the MNDA in my name the same night. Thank you both. 

​Alice and I, for the second Halloween running, dressed up as Elliott and E.T. for a local parkrun, and we had pimped up my ride from last year. Our lovely friends Dawn and Steve had made us a basket for me to sit in, and they also purchased an E.T. hand that lit up. They also managed to find me a Speak & Spell machine like the one E.T. used to help him phone home. We also got back into costume in the evening for the local trick-or-treaters, which was good fun.

​I want to say one last hello and thank you to a young man called Mostyn whom I met at a funeral recently. He came up to our table at the wake and asked if he could sit down. He then told me that he had been reading my blog from the start and, even though we had never met, he felt as though he knew me. It was so lovely to hear that a total stranger was interested in my story, and it actually brought me to tears. Thank you, Mostyn—this blog is especially for you.