06/07/2025 - 'Should've gone to Specsavers' by David

Some weeks are better than others as Morrissey nearly sang, and heaven knows I'm happy right now. 

Alice and I have had a good couple of weeks, spending a lot of time out of the house, enjoying this lovely weather we are having in the UK. We've gained two more parkrun course records, we've been on the radio, we've done another DJ set together, seen some cricket and we've even had a paddle in the sea!

Around the house, I've been enjoying my new wetroom, and my profile bed has been delivered, and as Alice now has to shave and shower me, dry me, and get me dressed, then flush my peg, we've got into a nice daily routine. Once she's cleaned the floor of the wetroom with the skill of a swimming pool attendant, I'm ready to be taken upstairs by 8pm, which then leaves Alice to have some time to herself to complete her squaredle and candy crush games and catch up with TV shows. 

Thankfully for Alice, we've been able to tick one task off her list of jobs, as we have had a magic toilet installed which is hands free! I just wave my hand over a sensor, or use the remote control, and after a jet of warm water, followed by a blast of hot air, I'm ready to face the world again with my pants pulled up.

I'm still managing to get upstairs for now, but it won't be long until I'll be sleeping in my new downstairs bedroom, and Alice has been busy painting the walls, putting furniture together, and she has made the bed up for me. I will miss sleeping next to Alice and also the hugs and cuddles, but she can give me a kiss goodnight, and I'll cuddle my toy Remi, from the film Ratatouille, or maybe Teddy will sleep on my bed? In fact, today we came home to discover him curled up snoozing on my new duvet before I've even tried it out myself!

I also have my power chair now, and it has had a really positive impact on my mobility and independence. I had been shuffling around the house with my walking frame as my legs have become weaker, and on a number of occasions I thought I was going to fall to the floor, so the power chair has given me the confidence to get around the house and also, out and about outside. 

It's taken a bit of getting used to - on my first trip to town, I managed to make a hole in the wall at Specsavers. The lady was very nice about it and told me it happens all the time but as mine was the only hole, I think she was just being kind. I then proceeded to take out a few chairs at Cafe Thrive but I've got the hang of it now and we've named it Zippy after my old 2CV. 

We plug it in to charge every night and then Alice leaves it at the bottom of the stairs for me before she goes to work. It's been such a relief to get it. I feel comfortable and more independent now and Alice can worry less about me. She also leaves toothpaste on my toothbrush and loads up the coffee machine for the day so I'm all set. 

During the day, while I'm alone with just Teddy for company, I can safely get around the kitchen, to my riser/recliner chair in the living room, to the toilet, and most importantly, out into the back garden to enjoy a coffee in the sunshine. I've also taken it on a bus, and will soon take it over to the island on the boat.

This past week, and for a few more, I have been, and will be sitting comfortably in my riser/recliner coffee in hand watching Wimbledon, Test cricket, the Women's Euro's, and the Tour De France - retirement suits me just fine thank you.

Our two parkruns were at Moors Valley, where it was so humid that Alice needed two ice creams afterwards, and at Oxford, which was very bumpy on dry grassland.

At the start line, waiting to go, a fellow runner came up to us and told us they'd seen us on Facebook. We are quite often recognised these days! Alice pushed me to two more PB's, and we now hold fifteen male wheelchair course records - she earned that second ice cream! 

After parkrun, we joined lots of other vegan runners for a day on the beach to celebrate Holly's 50th birthday, and John, who is a professional chef produced a gorgeous buffet. I made it down a slope, and a few steps onto the sand and with Alice and our friend Andy's help, I made into the water for a splash which was lovely. Maybe my last dip in the sea?

After our beach day, I needed to get back from the sand up to the road via some steps and my legs were just saying no. It soon became clear there was no way Alice could manage on her own so she called on friends Mark and Stephen to help. I had one on each arm while Alice lifted my legs from behind. I was close to falling but they supported me every step. When I reached the car, I was a little emotional when thanking them.  Emotional lability is a symptom of MND and whilst I've always worn my heart on my sleeve, I definitely tear up even more these days.   

I was invited back onto Vectis Radio, and this time Alice joined me. We updated our MND journey, Alice gave her perspective as a carer, and we reiterated that we are totally open to any questions regarding what we are going through, and nothing is off the table. I was allowed to choose the music which interspersed the interview, and Alice was as usual, on top form, a natural infact, and we've been invited back in August. 

DJ Tintin and his assistant Snowy were at the decks again in Southampton, playing the usual eclectic mix of styles, and I enjoyed a lovely cinder toffee stout as refreshment.

My hands aren't strong enough to get the records on and off any more, so Alice has to help me as it's getting harder. I only have two more sets planned so that might be it for Dave Double-Decks I'm afraid. But it's been lots of fun sharing Wednesday nights with DJ Haddock, DJ Cockles and DJ Dizzy.

Alice and I were gifted a couple of tickets to the Hampshire v Somerset Vitality Blast by our friend Raza, and I really enjoyed it - Alice, not so much. I haven't seen live cricket since the Sunday John Player league in the 70’s, in the Boycott, Willis, and Underwood era. Alice has never seen any cricket, infact she didn't know what an over, or a run was. At one point she even asked me why one team only had two players! I'm not sure she'll be going again, but I would, it was a nice afternoon despite the three rain showers.

I'll finish by mentioning two MND warriors that have died recently. David 'Syd' Lawrence was the first British born, black player to represent England at cricket. After suffering a severe knee injury playing a test against New Zealand curtailed his career, he went on to become the first black president of Gloucestershire, and was given an MBE for services to cricket in 2025. He was diagnosed in June '24, and by June '25 it was reported that he could no longer walk or talk. Syd died on June 21st, MND awareness day and the day after, Gloucestershire played a 'Wear Pink For Syd' game in his honour. 

Graeme and Jackie are one of a number of couples that we have become friends with at our local MNDA support group since my diagnosis and we heard the terrible news that Graeme passed away last week. He was a keen cyclist and we shared experiences and laughs together, and he seemed fine the last time we met. I remember how he mentioned that he was following this blog, so this edition is for you Graeme, and we send our love and condolences to Jackie x x