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

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 appointment with our MND care co-ordinator and neurologist doctor is usually a bit pointless, as the doctor knows that there is nothing that can stop my progression or cure me, and the co-ordinator knows that I am very well looked after in the community. This meeting was different though, as we had to tell them that I had deteriorated to the point that I couldn't independently transfer from chair to toilet safely. It was agreed that I shouldn't be left alone for the seven hours that Alice is at work, and our care co-ordinator made an enquiry on our behalf which prompted the NHS urgent response team to visit us the very next day. 

Every day since, Liz, Ken, Precious, Evan, Alicia and Holly have provided lunchtime care while Alice is at work. The 7 days of urgent care has now come to an end and from next week, the council is going to take over providing morning care in addition to the lunchtime care. 

This will enable Alice to get up, get herself ready, and leave for work like a normal person. It will also mean that she can work her hours over 4 days so she can have a day off during the week. She'll still do the teatime to bedtime, and all weekend care but hopefully she'll have more time to rest and recharge. 

We knew that this time would come somewhere along this journey, but having to admit that despite our best efforts, things have become too much for Alice to cope with working and caring for all my needs 7 days a week was not easy. 

We both felt a bit flat in the first few days of letting carers in to our home. We were happy that each other would now get the assistance and respite needed, but also sad. Alice felt that she was losing control of the situation and that she was letting me down, while I had to accept that I was losing more of my independence. 

Regular readers will be wondering about the latest exploits of Teddy the cat as he hasn't been mentioned recently. He's just been doing normal cat things like lying in the sun looking all cute and innocent, then bringing mice in and leaving body parts around the house.

Well unfortunately he's been in the wars again. He stayed out for about nine hours one evening which is very unlike him and on his return he looked very ruffled and disheveled. On closer inspection we saw that he had nails missing or split and one of his back paws was bleeding.

Teddy really doesn't like the vets and after previous visits, they told us that he would need to be sedated before they would touch him. Despite a dose of Gabapentin, he was still 'lively' and they decided an anaesthetic would be more appropriate. While under, he was cleaned up, nails clipped or removed, and given antibiotics and painkillers. After two days of staring at the floor in a drug stupor, followed by five days of staying upstairs recovering, he was finally allowed out and feeling much brighter.

We don't know if he got into a fight with the bigger tabby cat we sometimes see, or maybe the ginger cat that recently appeared. Maybe he got knocked over by a car? Anyway, what do you think he did on his first day back out? Brought two live mice in for Alice to chase out of the house!  

My brother Rich offered to stay over and look after me for the night to give Alice time off from caring for me, so we took him up on the offer. This gave me a weekend of entertainment and enabled Alice a much needed night away in a hotel. 

Alice got me up and in my chair before leaving the house for parkrun, a massage and checking in to her room, safe in the knowledge I was meeting up with my brother Rich for the day. Unfortunately my bottom had other ideas and after a frantic phone call, our friend Claire (a nurse thankfully) got me on and off the toilet and in the process saw things that only Alice should see! 

All clean and comfy, I met Rich in town and off we went to the football.

Outside the ground I was interviewed by my childhood friend Adam for The Saint Adam vlog.  Unfortunately Saints won but we had a good afternoon, sang for the boys and celebrated a goal.  

After a pizza meal, Rich and I went to The 1865 to see Bruce Foxton's band play his Jam songs and we reminisced and hung out our old lambrettas on the line to dry. After the bus home, Rich put me to bed with my CPAP mask and slept on our sofa. I'd had a great day.

After a late check out and a big coffee contemplating life and last night's TV and snacks, Alice returned to find Rich and I chomping toast, supping coffee, and talking about football and music, with little regard to the contemplation of life. 

Alice and I had had a lovely time independently while side by side, showing Motor Neurone Disease that it cannot and will not define us or stop us from doing as much as we can while we still can.

After not seeing our MNDA support group friends over the dark winter months, it was lovely to attend the monthly meet up to catch up with fellow sufferers, carers and volunteers. We sat around the table with coffee and biscuits and discussed how we coped with the cold winter days, looking forward to warmer days, and the new look MNDA logo, colour and vision for the future.

Unfortunately two people were missing around the table. Our friend Terry, who was one of the first people we met after my diagnosis sadly died recently. He was always so positive and we shared many laughs together. Our hearts go out to his wife and carer Ruth, we miss you both.

Alice and I were very pleased to be invited back on to Vectis radio to update listeners on our lives living with Motor Neurone Disease. It's a community, non profit station which gives airtime to all members of society, encompassing all ages, abilities and disabilities. 

The station started on the internet, then went onto FM and we were invited to press the button for their DAB launch while in the studio. The presenter Ian and I were both DJ's so he has invited me to join him to play some of my favourite songs on a future show. Alice said that she will book herself in for a spa session.

This morning we supported all the runners in the 5k, 10k, half marathon and full marathon in our home city of Southampton and saw many faces out on the course. Among them was our friend Zoe, raising money for the MNDA and looking great; she's raised over £550 for the charity so far. 

We were up early to watch from the Itchen Bridge with Mark, Sue, Chris and Gwenda and enjoyed cheering on our club mates, while also seeing so many other people we know from the Isle of Wight, parkrun, MND community, Hamwic Harriers, RunTalkRun - the list goes on! After all that clapping, we headed for breakfast for a debrief and more laughs. 

Many of you will like me, know how hard it is to train and complete a marathon. Well I am totally in awe of my friend Chris, who as I write (Saturday evening) is taking part in the 250 miles Thames ring ultra. He started on Wednesday and has been running walking, eating and sleeping out on the course, and has to complete the distance in 100 hours. He is running for me and Alice, and is raising money for the Motor Neurone Disease Association. His partner Gwenda is volunteering out on the course for the four days supporting Chris and the other runners. 

I spent last Sunday sat in my recliner watching the London marathon. Alice got me up and in my chair so we didn't miss a second of the TV coverage. For the next 10 hours we didn't move (except for snacks and coffee), and we reminisced about the amazing day we had last year. Due to my emotional lability I was crying on and off every few minutes seeing the runners and hearing their reasons for taking part. 

Two of our friends Penny and Anja, were running in my name and both did themselves and me very proud.  Despite getting GFA and ballot spaces, they still chose to run for the charity, raising £1500 between them. 

Penny had run Boston the week before, but that didn't stop her lining up in London for the MNDA.

Anja is the daughter of Kev, one of my best friends from school, and seeing how my diagnosis has affected him, she also decided to run for the MNDA. 

Another friend in our running club, Shannon, held a bake sale at her workplace and managed to convince her employer to donate to the MNDA if any of the workforce joined Shannon at her local parkrun too!

While TeamBaker weren't running London this year, our Bakermobile did. A fellow MND sufferer called Matt put out a plea for a running chair so we have lent our buggy out for his family to push him around the streets of London. Matt, like I did last year, was able to get out of his chair to walk over the finish line. 

It's quite upsetting to think that I have gone from running marathons, then walking over the finish line on the Mall last year, to now, not being able to take one single step. MND sucks.

I do however feel very thankful that my progression is slower than lots of people we know with MND, and I still have a great life.

Alice and I went to the flicks this week to watch the Michael Jackson biopic. I would like to say that I moonwalked from my chair to the cinema seat, but unfortunately I didn't. I did get fed popcorn like a baby bird in the nest though, Alice's talents know no bounds. 

I also met up with friends at a cafe within a record shop and was pleased to see that Josh at Sounds and Grounds had fitted a ramp after watching me struggle to get inside the last time we had visited. 

Just the other morning, I was sitting in my chair with a coffee in my hand, enjoying the sunshine and the cherry blossom moving in the breeze. Suddenly, the sky opened and the rain storm filled the air. For about a minute, the sun was reflecting through the rain, and I reflected on whether I would ever see that joyous view again? 

Make Every Moment Count. 

PS: Since Teddy's accident he has taken to sleeping on my bed downstairs during the day and on Alice's bed upstairs during the night - how cute is that!

PPS: Raising £1000, Chris came in 256 miles later at about midday Sunday in 96 hours. Legs and body tired, and into the arms of Gwenda with a beautiful smile on his face. Alice and I were with him every step.