03/08/2025 - 'Spooning' by David

Alice and I were delighted to attend and present the trophy at the annual DB Cup football game between members of the hospital team that I started over 10 years ago. The reds beat the blues 6-3, after being 4-0 up, before the blues brought it back to 4-3, only for the reds to seal it with 2 late goals.

I presented the silverware to the winning captain João, who was playing his last game before moving away. The players raised over £500 for our JustGiving page, and we celebrated with an Indian meal out.

It's been 2 years since I had to give up football and the line up has changed with players who have since joined who I don't know. Despite this, they all came over to shake my hand and thanked me for starting the group which was very kind of them. 

Thank you Adel, Rich, Graham and all the other boys for organising. 

I've had two hospital appointments since the last blog. The first was a biopsy under local anaesthetic, on a spot on my nose, that I've had for many years, that bleeds sporadically, but won't heal. They weren't too worried about it  but we won't know the results for a while. Alice held my hand and I didn't cry - honestly. The other appointment was my 6 monthly MND Smart research trial update. My research nurses Kat and Rolan took my weight, my respiratory values, my blood, asked me questions, tested my cognitive abilities, and ordered me a lovely lunch of vegetable hot pot and a doughnut! 

Alice also takes part in the research and has to be taken off for a private interview about my behaviour as sometimes people with MND can develop dementia. She is asked about possible obsessive behaviours, paranoia and rituals but she tells me she reported I'm still acting normally (whatever that might be!)

My respiratory values were 93% of the average expected for a man of my age, weight, and height, I passed the cognitive test, and my weight at 62kg, was a little down, but nothing to worry about just yet. 

One of the questions that I'm always asked as it is a symptom of MND is if I am I producing more saliva? And for for the last few weeks I have noticed that I am. I'm also finding it harder to get my food from my fork to my mouth, as my hands and my arms show less and less interest in wanting to contribute to my feeding. I've started using a large spoon for everything now and have to bring my head right down to meet my arm but I will do so until I can't, then Alice will have that pleasure. 

I also had a home visit from Lisa, from the nutritional team, who mentioned maybe trying a food supplement drink, which I've agreed to. She tried to impress me with pineapple and cranberry flavours, but if it's milky or grainy, I don't think I'm going to like it. She said that I need to eat as many calories as I can, and when I said I have cake once a week, she asked if I could have it once a day! OK, if it's on medical advice, I guess I should!

I recently completed my 200th parkrun at our local, and favourite course on Southampton Common. 

Strangely, my first parkrun 9 years ago on the 16th of July 2016 is also my personal best time, as I have never been able to beat it, although I did come within 5 seconds of it once, while running in a pair of Superman pants, although that is a story for another day. 

My inaugural time was 21:16 and I'm very proud of that as I had just turned 50 and infact, on our return home there was a letter from the doctors for me to attend a well mans clinic. 

Over the years I have run at 57 different parkrun locations in 4 countries, and have volunteered 46 times including at junior parkrun. I have run it, walked it, paced it, guided a visually impaired runner, and of course since my MND diagnosis, I have been pushed in the Male Wheelchair category.

For our 100th, Alice and I ran both together in an XXXL t-shirt with a large 100 on the front and back, and as well as Superman, I have run as Father Christmas, a swimmer, Beetlejuice, and a unicorn.  

As well as Christmas and New Year's day parkruns, we also ran on our wedding day, and again on our vow renewal day.

Alice was determined to make my 200th special, and she pushed me to a new course PB by 3 seconds! 

200 parkruns is not an officially recognised milestone but it will take me a year to get to 250 with real commitment and although we are hopeful to get there, the future is not guaranteed. With this in mind, we had many friends past and present come to celebrate with me with a few surprises including colleagues from neuro theatres. 

Nic, the run director, gave us a lovely shout out before the start, which was heard by a reporter for the local TV station, and he has since contacted is to ask us if we would like to be featured as a local news story to promote parkrun, assisted running and motor neurone disease, so that should be fun.

I've recently been communicating with a lady called Julia, who has also been diagnosed with motor neurone disease. Her number was given to me after Alice gave a short talk to Meon Valley parkrun on Global MND day. A runner then contacted parkrun to ask for my details as they had a neighbour recently diagnosed and was struggling and thought I could help. 

After speaking to her, it sounds like our symptoms and their progression, are quite similar, and as such, we had lots to talk about. Unfortunately, she and her partner have neither a computer or a smart phone, and without the help of an MNDA volunteer, she was unaware of the availability of the financial and emotional support that we have received. I have advised her to ask her local hospital more questions, and have put her in touch with our MNDA volunteers in a hope that they can help find a volunteer in her area. She is always very thankful for our chats, and I'm happy to stay in touch for as long as she wants me to. 

Two of my friends are taking on the 15,000 steps a day in August challenge for the MNDA in my name, which we are very grateful for. Debbie is the wife of one of my former bosses Dave, who has promised to assist and encourage, and Ange is the wife of my cousin Ed - I expect nothing less than assistance and encouragement from you too Eddie baby! Good luck ladies! 

Our fellow running club friends Ruth and Conrad, have started their Wainwright walk too so thank you all for going the extra mile(s) for MND. 

Staying on the fundraising theme, our friend Carlo was again involved in the Ian Pratt Foundation swim of the Solent from Stokes Bay to Ryde beach. Carlo, who runs marathons dressed as the Cookie Monster for MND, was a safety kayaker for the swimmers. Ian Pratt was 52 when he died of MND and his friend Tony Bray and many others have been raising money ever since. Carlo made his 7th crossing in windy and bumpy conditions. 

Since my diagnosis two years ago, Alice and I have been overwhelmed by the love and support shown to us, and our dear friends are so kind towards us. 

Jon and his dog Jasper came to sit with me to watch the Tour de France cyclists attempt Mont Ventoux, and he brought lunch and cakes too.

Then our friends from our MND group, Nigel and Janet came and picked me and my wheelchair up and took me to the daytime meeting that is held outside our area. It's always more popular than our evening meeting as sadly, many of sufferers are reliant on carers coming in to put them to bed, and are not always aware of the time of their visit. It was lovely to see our friend Terry and his wife Ruth, who I hadn't seen for a while. Keep fighting Terry and Janet!

And finally, We must also thank our friends Claire and Kev who came to watch the Lionesses win the women's European football final and they brought bangers and mash to eat - how more English could we be? 

Well done ladies. So good, so good, so good!