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

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 invasive ventilation (NIV), which will be the next step of trying to keep my lungs and breathing to acceptable levels.

I have agreed to go back to have a go with an NIV machine next week.  

I've also had a visit from Dani, my Speech and language therapist (SLT), who assessed my swallow and we discussed a slight cough at times, voice weakening, and reduced breath support but I've had no choking episodes, or chest infections, and she said my symptoms are largely similar to my last assessment 8 months ago. I mentioned that I sometimes have trouble finding words, and apparently this may just be brain fog and not dementia, which is sometimes associated with MND, as I'm not showing any other signs. 

I had a letter from the Chief Investigator of the MND-SMART research trial at the university of Edinburgh, saying that the independent trial committee has reviewed the stage data and has decided to stop trialling Amantadine. Therefore, I have stopped taking my drug/placebo and I'm off the trial. They are looking to introduce new study drugs, and I may be eligible to rejoin the trial. It's disappointing, but it really did taste horrible so it's not all bad. 

Unfortunately, after noticing recently that I was finding it harder to make my coffee while Alice is at work, I dropped a coffee that I had made, and although I was able to find a towel to mop up the worst of it, Alice had to clean the worktop and the floor on her return. It was annoying, but inevitable, and I've since bought a flask which Alice fills with enough coffee to last me during the day. 

Alice now has to do more and more for me as I get weaker and the tasks are constant and relentless. It has come to the point where she needs some sort of respite, but we are not yet entitled to any paid care. Thankfully some of our lovely friends have offered to sit with me while Alice has some much needed time to herself. We've also had some home cooked meals brought round which we are very grateful for.  I had a call from social services saying they are worried about the times I'm on my own so are arranging a further care needs assessment. 

Our videos on our social channel have proved popular and we've had lots of encouraging comments. The video of our new transfer aid, the Sara Steady has now had over 36,000 views, and we've added more films since.

We have done a Q&A session which hopefully answers some questions that people have been too scared to ask me face to face. We've had really good feedback from people saying it did actually address things they had been wondering about but didn't want to ask. Please have a look on our socials. 

You may have seen in the news that the independent commission on adult social care, which looks after older and disabled people, said the UK is facing a "moment of reckoning" in social care, and called on the government to take urgent action to address current failings. Baroness Casey, chairing the commission said "People diagnosed with Motor Neurone Disease, whose life-expectancy is short, still face multiple assessments and means tests". She has asked for a new fast tracked passport for people with MND. The MNDA said "People with a disease as devastating as MND should never have to fight to access the services they need"

You may have also read in the news about Davy Zyw, who was the first person with MND to compete in the Paralympics. He was diagnosed in 2018, and fulfilled a childhood dream to compete in the snowboarding for team GB at MilanoCortina 2026.

I popped up to London to meet up with my youngest daughter Anna and her boyfriend Jake and we went up the chimney lift at Battersea power station which was amazing and gave us a great birds eye view of the city on such a clear day.

We went to a cafe for lunch and Anna had to feed me for the first time, which she dealt very well with. Remember when I used to feed you Anna?

I've also been over to the island to see my mum, my eldest daughter Rachel and her husband Max. They've had a ramp fitted to the rear of their property funded by the MNDA which will enable me to visit them more often in my power chair. I was able to feed myself this time, but watching me struggle was probably an eye opener for them all.

While on the island, my good friend Paul took me out to Ryde to see an exhibition by a comic artist, Barrie Mitchell who between 1961 and 2012 drew for Action, Scorcher, Lion, Bunty, Mandy, Judge Dread, Look-In, Doctor Who, and Roy of the Rovers among others.

Barrie, who lives on the island was very happy to sign my copies of stories he had drawn, and we chatted about his career. I also met the widow of another Roy of the Rovers artist Tony Harding, who also lived on the island. How crazy that while I was reading the comic in my childhood, little did I know that it was being created not far from my house. 

Lastly, I would like to thank my nephew Eddy, and my friend Alex, who are both taking part in the 100 miles in March for the MNDA. Walking, running, cycling, and gardening(!) have all so far taken place. 

My friends Layla, Zoe, Chris, Penny and Olena all have events planned in the next few weeks and months and are all fundraising for MND charities. Thank you all 🧡💙

We're just starting to feel the first warmth of Spring and I'm able to open the door in my bedroom by remote control to let the sun in. I'm looking forward to more of this!

I celebrated my 60th birthday last week. After my diagnosis in 2023, I wondered if I would make it to 60, so I decided to mark it with three days of celebrations. It started with a parkrun at Southampton and over 50 vegan runners came to run with me and to sing Happy Birthday.

It was also Alice's 250th parkrun and we both got a shout out before the start. In the evening I had a party and over a hundred of my friends and family came to celebrate with me and I had a great time talking and dancing in my power chair. It was lovely to see some school friends that I hadn't seen for over twenty years.

Alice then whisked me off to London for a couple of nights and we packed in some lovely experiences. Evensong at Westminster Abbey, a cut throat shave, a post office themed cocktail bar with drinks being 'air mailed' to your table via pods traveling through tubes on the ceiling, an interactive Paddington experience, an immersive art gallery, and a trip to see the Phantom of the Opera.

We stayed in an accessible room at a Premier Inn and I had my first bath for six months. The bath was low and Alice had packed our handling belt. It wasn't easy but between the two of us, we did manage it. 

We were treated to free breakfasts too, so it was a very happy birthday to me! 

Despite requesting no presents, I was very spoiled for my birthday and received over 50 cards and nice gifts which included cinema vouchers, a trip to the Winchester planetarium to see the immersive Van Gogh exhibition, a Derby County football shirt, a handpainted plate, a coffee flavoured lip balm and a scratch card that won me £5!

Unfortunately since my birthday I have been in bed for a week feeling poorly. I'm not sure what it is but I have shivers, blocked ears and diarrhoea. I said to Alice that I think I have catarrh, but she said she no-one calls it that anymore! Unfortunately when you are bed bound you can't just get up and run to the toilet so I'm afraid we had a couple of 'shituations'. Alice has since got some inco pads for the bed and the sheets have remained clean. Sorry if this is too much information but this is the reality of motor neurone disease. One day i had to call Alice at work and ask her to come home to sort me out. She has been working part-work from home these last few days while I've been so unwell so I can call if I need her and that's been reassuring that she can come to my rescue at short notice. 

This just highlights what an amazing job Alice is doing and on Mother's Day I want to say what a brilliant mother and carer she is to Fin and I.