14/09/2025 - 'Rough times' by David

I've had a fortnight of sleeping downstairs in my new bedroom now and it's going very well. Alice surprised me with some Derby County duvet covers and they're keeping me cosy. 

It's certainly quiet. Alice's room is at the front of the house and when she asks me if I heard a car alarm going off, a cat scrap, a fox screeching, or an owl hooting in the woods opposite, I say that I didn't. My room is at the back and there is very little noise in the back gardens that overlook my new abode. 

With my strength and mobility compromised, the profile bed is very helpful. I can use the handrails to turn over in bed to my preferred foetal position, and I can raise it to assist getting out of bed in the morning. The end of summer rain showers that we've had in Britain have been rattling on the flat roof, which is quite comforting when I'm tucked up in the warmth of my bed. Teddy hasn't slept on the bed with me yet, he just waits until I'm up - cheeky little tyke. 

This week marked a while year since Teddy came to live with us. He's a lovely companion and much loved member of the household although he's certainly caused us some recent drama with his battle wounds and his insistence on bringing us unwelcome gifts into the house. We still love him though. 

My dietitian Dani phoned to ask if I needed a visit, but happily I could tell her that my appetite, speech and swallow had all hardly changed from three months ago, so she will ring again in December. Since I started on the supplementary milkshakes a few weeks ago, I've put on over a kg in weight so that's also good news. 

I reiterated how well I have been cared for by the community teams in Southampton. I'm aware that not all areas are so lucky.

We were surprised to hear that we were mentioned on a BBC podcast on radio 4 recently. Luckily our friend Nic had heard it in the middle of the night and messaged Alice to tell her. It's called Access All: Disability news and mental health and the presenter talked about assisted running and sports wheelchairs. We are always trying to raise the profile of inclusivity in sport and our parkrunning and event running together certainly shows that disability shouldn't be a barrier to inclusion, and hopefully this podcast, or our blog should give other wheelchair users, the confidence to participate. 

You can listen back here - it's right at the start of the show:

BBC Sounds

Six of our Hampshire Vegan Runners travelled to Gloucestershire to watch Forest Green Rovers, who are currently top of the National league in England, and they won 1-0. They are the world's first vegan football club, so they have become our adopted football team. 

On the way there, we stopped off at Tidworth in Wiltshire for a parkrun, and despite Alice and Andy having to push me on wet grass, with a couple of hills, I claimed my 20th male wheelchair course record.

To be fair, there wasn't a previous time to beat, so any finish time would be the record, but we'll take it.

As usual, we have nipped over the Solent to the island few times, to see family and friends.

We joined the rest of the family to celebrate my mum's 86th birthday and everyone was able to attend which was nice as this very rarely happens due to traveling or work commitments. We have sadly lost family members in the last couple of years, which is very upsetting, but we had 17 present to celebrate with mum, and we sung Happy Birthday to her - good old Sheila! 

Alice had to switch seats to help me eat my food and it was the first time some of my family have seen me be fed. I try to do as much as I can myself but I soon get tired and help is needed. 

Alice and I were amazed and delighted to accept a very generous donation from a couple of friends of mine, Jamie and Steve, and their golf friends and family. For more than 20 years, they have contested the Cowes Week Golf Open, a crazy, boozy, day of golf, raising money for a good cause via hundreds of 50p or £1 silly fines given out on the course. There were over 30 players from 3 generations of families, all playing for the oversized yellow jacket that everyone wants to win, but nobody wants to wear. 

I was actually nominated to be the benefactor of this years total raised, by one of the players, Connor, a school friend of my daughter Rachel, which was lovely. I met up wth some of the players in a Cowes pub, wearing their lovely pink shirts, and they presented me with an envelope stuffed full of notes of all colours.

It was such a kind gesture, and it was very emotional accepting the money. The donation has paid for our cruise next year and we are going to buy some new garden furniture so we can enjoy the last of the summer (hopefully!) so it's definitely been put to good use so far.

You can read the full report here:

The greatest golf day you've never heard of

I was then pushed along the high street to the 'Richard Branson' Indian restaurant for a catch up with my old band mates. The faded photograph of the millionaire mogul shaking the hand of the restaurant owner, which must be 30 years old now, still adorns the front window, and has become a local landmark. We had a great catch-up as usual and we've already planned the next one for February. Since our last meet up, I have become wheelchair bound, and I now find it hard to feed myself, so I'm sure it must be very hard for them to see me as I am now, but they all played their part in looking after me. 

A few days later, we were back over for another MND fundraiser. My ex-wife Donna, very kindly organised an evening called Dance Through The Deck-ades for MND, and we had a great time. My friends Michelle and Darren played an hour each of 60's and 80's vinyl, and in between, I played an hour of 70’s glam, punk, reggae, and disco.

The disco section certainly had them shaking their bits to the hits, and Sheila was pogoing at the front. Alice helped me at the decks, and we have a bit of fun deciding between us, what to play next, and we sing and dance along to records. There was a competition to guess the first ever record that I bought back in 1973, and there were 64 squares with the hits of that year within. There were some great records released in 1973 including Elton's Goodbye Yellow Brick Road, Bowie's Jean Genie, Sweet's Blockbuster, and Carly Simon's You're So Vain. Unfortunately, the seven year old me eschewed all these tracks, and spent my 25p on a sickly country ballad, sung by Donny Osmond's sister, Marie called Paper Roses. 

The room was full of family, friends and members of the MND community, and nearly £600 was raised. 

Despite a busy and enjoyable schedule, I've actually had quite a hard week mentally and physically. Life is a myriad of emotions, and I feel lucky to have so many people thinking of me and helping us out in so many ways, but sometimes, when alone with my thoughts, it hits hard just what is happening. Trying to do just about anything is frustratingly challenging - from getting myself dressed to making a cup of coffee. Everything is a slow and difficult process and having an infection in my feeding tube hasn't helped. I've felt pretty miserable at times. Hopefully the antibiotics will kick in soon as it's quite painful bending down, or turning in bed. I even missed parkrun yesterday as I was worried about getting in and out the buggy with my sore PEG and the cold weather also put me off.

Feeling cold is an ongoing problem for me with barely any fat or muscle to keep me warm, but Alice announced this morning she's bought me some thermal joggers and hoody to wear at home and it will soon be time to charge up the heated gilet, socks and gloves to wear outside. 

The love and support we are continually  shown though, keeps us going, and certainly gives us strength. 

My friends, Angela Smith, Debbie Hillier, and Alex Higgins, all took on the 15,000 Steps A Day In August challenge in my name. They all managed their steps and more, raising lots of cash, so if you donated, thank you on behalf of the MND community.

Alice's old uni friend Nicola and her sister Sarah have been busy training for the Great South Run and since reading this blog, have decided to raise money in my name and my sister-in-law Ellen, has been making earrings out of old cans and is selling them for the MNDA - £5 a pair, enquire within!

And I've just found out today that my friends Debs and Milz have signed up to walk her dogs 75 miles in October for the MNDA, and also the daughter of one of our running club has asked if she can fundraise for the MNDA at an upcoming 10k race which she'll be doing on her 16th birthday. This is very sweet of her - thank you Daisy x 💙🧡