09/11/2025 - 'The seasons are changing and so am I' by David

I've had a fortnight of differing weeks, with a very busy first, followed by a much more sedate second.

A trip to the pharmacist for my flu jab, a visit from a community nurse to check my feeding peg, my respiratory appointment at the hospital, a lovely day in London, a night of Halloween bingo, and dressing up as E.T. for trick and treat and parkrun, left me gasping for air in the last week of October. 

After our last bingo evening was called off due to Teddy being in a fight, we finally made it to a Halloween themed bingo night. Sadly, we didn't win any prizes but we had lots of laughs and the buffet was delicious. I even got a pumpkin pasty.

The first week of November was far more relaxed. In fact, apart from an appointment with the lymphoedema nurse at the doctor's surgery, I didn't leave the house from Monday to Friday.

The trip up to the doctor surgery to see the lymphoedema nurse didn't quite go to plan. As I hadn't fully considered how long it would take me to get there in my zippy chair, I arrived late and the patient behind me had already arrived so she didn't have much time to assess me. She did have a quick look though and advised me my feet are too dry and they need daily moisturiser - another job for Alice. I've been booked to go again next week and this time, I need to lie with my legs up for 30 minutes and then she can look at my blood flow with a Doppler probe. She has also sized me up for some stockings which are on order. With my crocs and added stockings, my street cred will be firmly out the window.

At the respiratory appointment I had a mixture of good and not so good news. My weight was up to 64.3 kg, which is good as I need to try to keep my weight up for as long as I can. My blood gases were good, my cough was still strong, and my observations and examination were all within normal parameters. I had to wear a sat's probe on my finger overnight to record the oxygen levels in my blood, and we had to report that Alice has witnessed some sleep apnoea, and that I wake up with a headache sometimes. I also yawn a lot in the mornings despite being rested and these symptoms are the result of CO² retention. At the moment I don't require any supplementary oxygen at night but it was actually offered to me for the first time, if i felt the symptoms were intrusive. They were happy for me to decline for now and to keep our appointments at quarterly intervals so we left relatively happy.

My day in London was to meet up with my daughter Anna, and we had a really nice time together. She met me off the train at Waterloo, and as I was in my power chair, we wanted to avoid public transport if possible. She's lived in London for long enough to know her way around, so we walked to the river and along the south bank. The sun was shining and it warm enough to sit outside for a chat and a coffee. 

We continued to and over the millennium bridge to St Paul's, and after some photos on the bridge and at the cathedral, we went to the Tate Modern, which is ideal for a wheelchair, with it's wide corridors, and expansive rooms. It was a lovely way to spend an afternoon. It's free to enter and some of the sculptures, paintings, and video art were quite moving. After a pub lunch, and a hug on the platform, she waved me off, back to Southampton.

When thinking of costumes for the annual halloween parkrun at Bartley, one of our friends came up with the genius idea of Alice as Elliot, pushing me as E.T. and it was hilarious. A rubber mask, a blanket, a red hoodie, a rubber finger with a red light at the tip (thank you Sexy Steve), and the soundtrack from a speaker was all we needed, and it it was very effective. We might re-enact it at Christmas.  We also won first prize for fancy dress in our running club's competition.

Unfortunately, the following week was a totally different affair, and with too much time on my hands to think about my condition, and how it's making life so hard at times, I slipped into a pity party mood, and a state of depressive lassitude. I knew that it was silly, but I just couldn't get myself out of it. I have so many friends to talk to, which I'm very grateful for, but sometimes I just want to hide away and wallow.  In fact, I turned down a few social events as I didn't want to see anyone. I just wasn't feeling up to talking and pretending everything was ok. 

I drank a lot of coffee and pondered life. If the sun shone, I sat outside and watched the squirrels and birds in the gorgeous elderly oak tree opposite. It must be 200 feet high and has five main trunks and a beautiful shape. The leaves are dropping with every breath of wind, and our drives are being covered in all shades of autumn. 

If the sun wasn't shining, I was inside, on my recliner, with the fire on, watching TV. BBC news, Scam interceptors, Crowded House gigs on YouTube, programmes about steam trains, and old films on Talking Pictures TV. 

I've also been playing through my vinyl albums, some haven't been on a turntable since my Amstrad Hi-Fi system in my bedroom in the 80's.

The weekend, with Alice being around, was my savior, and the warm sunshine helped my mood too. For anyone feeling concerned about me, I'm pleased to report I'm feeling better.

Saturday didn't start well though, as while getting ready for parkrun, I pulled the handrail around the toilet off with my power chair and I said to Alice that I wasn't in the mood for socialising and was going to stay home. Luckily, she persuaded me to go and I'm glad that I did.

We joined our friends for parkrun and we walked at the back due to Alice injuring her big toe. The common was glorious even in November and we passed under beech trees which looked beautiful in the sunshine. 

This was followed by coffee at Happy Bean where it was sunny enough to sit outside, and then goodies from a vegan market, before going home to relax. Alice went upstairs for a well-earned rest, while I watched the football, and all my teams, Derby, Wycombe, and Forest Green Rovers, all won - wahey!  

Alice's dad also popped round to assess the damage I'd done to my bathroom rails and assured me it was fixable and will pop round in the week to sort it. Thank you Chris.

During the night, I had the pleasure of lying in the darkness listening to Teddy chasing a mouse that he had brought in, around my bedroom. After about 20 minutes, it all went quiet before I heard him chomping away, and bones being crunched. In the morning all that was left was a tail, which Alice had to pick up. Later, he was sick on my record decks and poor Alice had to clean that up too. He's disgraced himself and he doesn't deserve treats, not until tomorrow anyway. Naughty Teddy.

We finished the week with a nice Sunday afternoon walk to get a coffee, and we're just ready to sit down for the Strictly results programme and a bit of Antiques Roadshow. That's what Sundays are all about. 

The last few months have been hard for both of us, and we know that it's going to get harder, but even though we do struggle sometimes, we are still doing okay, and trying to enjoy everything and everyone around us. 

Since Alice changed her hours so that she can get me up, dressed, and breakfasted, life for me has become easier. I wave her goodbye while chomping on toast or cereal with a coffee waiting, my lunch is all left out ready for me and then I spend most of the day in my recliner waiting for her return at 4pm to cook my tea. She then has to shave, shower, and tuck me in before she can relax. She also has to fit in the washing, the cleaning, the bins etc, as well as looking after Fin and Teddy too. Me, Fin, Teddy and the bins are very grateful we have her. 

I have a dear friend Vicky, who I have known since highschool, and we stay in touch mostly via text or email as she has been living up north. We are both wheelchair bound - her with Multiple Sclerosis, and me with Motor Neurone Disease, so we look after each other through words of encouragement and empathy. Her and her husband Nigel, have recently moved south, and we met up recently, and it was lovely to chat to her. We smiled a lot, discussed our lives with debilitating illnesses, and we both agreed that we have a lot to live for, and that we aim to do so, as well, and as long as we can. 

The Rob Burrow centre for Motor Neurone Disease was officially opened in Leeds this week. After his diagnosis in 2019, it was Rob's dream to build a facility dedicated entirely to mnd care, research, education and support. It was quite emotional watching Rob's wife, children and parents at the opening, made possible by 6.8 million pounds of fundraising by Leeds hospital charity, Kevin Sinfield, Leeds Rhinos, the Burrow family, and more than 17,000 donors. 

745, the charity rugby game which brings the two codes, league and union together, was played on Sunday. Rob Burrow and Ed Slater devised the concept after their MND diagnosis, and the numbers represent the shirts worn by Rob, Ed, and fellow sufferer Doddie Weir, who died in 2022. Proceeds go to their 3 charities, The Rob Burrow Trust, The 4ED Foundation, and My Name'5 Doddie Foundation 

Sadly, we heard the terrible news that another sportsman has recently been diagnosed with Motor Neurone Disease. Lewis Moody, the ex-England rugby union captain was part of the move that led to Johnny Wilkinson's drop kick that won the World Cup final against Australia in 2003. As Alice and I watched him on the TV news, talking about the emotions of his diagnosis, and having to tell his family, we knew exactly how he felt. 

Athletes are disproportionately affected by MND, with a study suggesting the rate of the disease is up to six times higher than in the general population. It is thought that by limiting the oxygen available and causing damage to motor neurone cells, regular, strenuous exercise can trigger the disease in those already genetically susceptible. Of course, we know that there is no known cause or cure currently for MND, so that is why funds for research are so valuable.

Thank you to my niece Milz, her son Simon, and their dog Storm, and also to my friend Debs, and her doggies Heston and Monty. They all completed 75 miles of dog walks in October for the MNDA. Another friend Alex with his dog Mads only started the challenge on the 21st, but are determined to complete the challenge as soon as they can. Great work all of you! 

My friend Carl, who builds guitars, is raffling off the very first one he made many years ago for the MNDA, and he's had a good response, helped by some press coverage recently. The winning ticket will be drawn in December so please do buy a ticket, or send the link to any guitarists you know. 

Link to guitar raffle

November's challenge for the MNDA is to craft every day, and my friend Mave has signed up.

So far she has made chutney, apple pies, and is now sewing and stuffing memory bears.

 Speak soon, "I'll be right here".