12/10/2025 - 'Fame at last' by David

Well, even by our standards we've had a crazy few weeks, with a fortnight of gigs, TV and radio appearances, a fall, another hospice visit, and of course, parkruns!

It all started on a sunny autumnal Monday morning at Southampton common. One of BBC 's researchers had heard about our assisted running story on a podcast recently, and contacted Alice to ask if we would be interested in being featured on South Today, our regional news show. We are passionate about raising awareness of both Motor Neurone Disease and assisted running so we were thrilled. 

They wanted to tie our story in with the Great South Run, as we are going to be the first assisted wheelchair runners to be part of a pacing team at this years upcoming event. 

We met Lewis Coombes on the common, which was a bit surreal as we usually see him on the telly presenting the sport section. He and his cameraman were so nice, and we did an interview before they filmed us in action. There were lots of angles and shots to be taken including a GoPro on the buggy, a drone for overhead shots, the cameraman running alongside us and we found out what a 'noddy' shot was! We were filmed doing the interview from a few angles, mostly the same questions so we could be filmed both talking and listening and then Lewis is filmed doing his 'noddy' shots which is exactly what it says on the tin - he nods along to us talking. We were certainly learning a lot about media and all the lingo that goes with it! 

Filming was challenging at times - a group of school children in the background, the sun in our eyes, a man picking up his dog poo and us bumping into 4 different people we knew! 'Sorry...can't chat, just doing some filming for the BBC' 😆

Lewis said it was hopefully going to air during the week so Alice went off to work, while I carried on down the docks, and got the boat over to the island to see the familam. 

I managed to see my mum, my daughter Rachel, her hubby Max, and my sister Lois, and I was planning to stay for two nights, but on the second afternoon, I had a phone call from Alice saying that the BBC were showing our piece that evening at 6.30pm, and could we come in to the Southampton studio at 5pm to do a live interview on Radio Solent to tie in with the film. 

So Alice walked down from the hospital after work, and I jumped on the next boat and met her outside the BBC South building. As we waited in the reception to be called into the studio, we saw Lewis, and we also met Ed Sault, our favourite presenter, and his lovely parents, who were over for a visit from Jersey. We briefly saw Alexis, the weather presenter but unfortunately didn't chat as we were whisked into the radio booth.

We have both done a few interviews since my diagnosis and some go better than others, but this one was really good. Rick Jackson, the presenter was very friendly and laid back, which calmed us down, and we managed to say everything that we wanted to, and shared a bit of banter with him at the end. They even gave us a Radio Solent goody bag each on the way out!

We got home just in time to see ourselves on the telly, which was really weird, and our phones were on fire for the rest of the evening as everyone was sharing and commenting on the film.

It is our wish to promote inclusion and opportunities for disabled participation in sports, and South Today has 400,000+ viewers each day, and our video on the BBC website has been viewed 19,000 times, so it was definitely worth it. We also had two messages from strangers who had seen the piece on TV and contacted us for advice on how to get started with assisted running, where was our chair from etc and we were very happy to give them all the info.

Have a look at the mini version of the film here:

BBC South Today video

Talking of stats, our Just Giving page has now tipped over £13,000 and this blog has now had 60,000 views worldwide so we are very happy with that.

Unfortunately, while I was on the island, I had a fall in the night, on the way back to my bed from the toilet, and I spent the rest of the night sleeping on the floor! It took me an hour, but I managed to shuffle on the floor, back to my bed but then I didn't have the strength to pull myself up onto the bed.

My 86 year old mum was the only other person in the flat, and I knew that she wouldn't be able to help me and I didn't want to worry her, so I pulled the duvet and pillow from the bed and made myself a makeshift bed on the floor. It was a bit like when you go camping and your airbed goes down in the night, but I actually slept very well and was nice and warm. 

I rang my sister in the morning and she helped me up, got me into a chair, and made me a coffee. The adventure was over, but it did shake me up, and I've had to accept that I can't stay at mum's anymore, without someone around to help me, which is a shame. I've now fallen four times, but still not really hurt myself so I consider myself very lucky. 

Alice and I returned to the hospice to meet occupational therapists Mary and Tanya to discuss and try out some equipment and gadgets available to help me to transfer from chair to chair, to aid feeding and dressing myself, and for toileting once I'm bed bound. We've already taken on their advice for car transfers which is helping and we've got a banana board on order. 

We stayed around and joined in with the weekly chair yoga session, one of many classes that the hospice provides, and we both enjoyed it. As most people taking part are disabled, it was lots of breathwork and the moves were adapted so we could join in as much as possible. It was very relaxing.

We've been given some exercises for me to do alone, and some which Alice can help me with, to keep stretching and using the muscles while I can. I've also had a specialised massage from a friend of ours, Leanne, who works at a cancer charity as a complimentary therapist, and she tried to get my lymphatic system and blood flow moving, as my lack of movement causes my puffy feet.

My condition makes me very tired and Alice usually has me tucked into bed by 8pm, but we've had a couple of nights out in Southampton to see two acts at either ends of their careers. 

Edwyn Collins was the lead singer in 80's punk pop outfit Orange Juice, and went on to have solo success before he suffered a double cerebral haemorrhage.

Despite his right sided weakness and aphasia, he continued to write and perform, and we went to see him on his farewell tour, and he had his adoring fans in tears with his renditions of songs that have meant so much to him and to us since 1980.

A week later we were in a small club,  watching a young band from Berkshire called Who Ate All The Crayons. Unfortunately, the venue Heartbreakers doesn't have a lift but I wanted to go and had lots of offer of help to get up the stairs. I had to have 3 people helping me up with one person on each arm (including lead guitarist from the band!) and Alice lifting my legs from the back. We had another member of the band carrying my wheelchair up behind. Going down was just as challenging but I had help from friends Oli and Jonny on each arm holding me up with Alice guiding my legs from the front. It was hard, but we made it happen. I'm grateful people are so willing to help me stay involved in nights out. 

It was the second time we've seen The Crayons and we really like them. Good luck to them and if they have half the success that Edwyn has had, they will do well.  

Our parkrun news is that Alice hit her 100th volunteer milestone. Last week, she had tried unofficially to pace as practice for the Great South Run but with the congestion on course and the up and down hill, she came in quicker than planned. However, she was determined to get it right next time so picked up the 34 minute pacing vest and tried again with a much better result of 33:43. 

We had a nice end to another busy fortnight, with a visit from my brother Rich, his wife Vanessa, and their children Isaac and Erin over from the island. Erin was desperate to see Teddy the cat and they got on very well. Isaac was lost to Fin's bedroom for lego and gaming, while it was warm enough for us to all sit outside, which was lovely.

In readiness for their visit, we had to finish our Where Is David Bowie? jigsaw which has been left half finished on the dining room table for too long. Despite Teddy trying to hinder our progress, we pieced together the many incarnations of the star man.

As we were under pressure, it was little wonder that we were struggling like absolute beginners, but we finished it like heroes, and did a little magic dance to celebrate. 

I mentioned last time that Daisy was running the Chichester 10k for the MNDA on her 16th birthday, well she absolutely smashed it, leaving her mum eating her dust. She raised £465 in the process and not only that, finished 3rd female and 1st under 20! Happy Birthday Daisy, congratulations and thank you!

Thank you also to Milz and Debs, who are half way through walking their dogs 75 miles in October, and also, also to Mave, who has signed up for the MNDA's Crafting Every Day In November fundraiser. 

As Edwyn says 'Stay cool punks' 🧡💙