09/02/2025 - 'It's been a wheely mixed bag' by David

Well, we all got through January, didn't we? How was yours? Okay? Unfortunately, mine was a bit pants really. Apart from parkrun on Saturday mornings, I hardly left the house as I need someone to hold on to me when I'm outside now, and Alice and I haven't had any days out, or overnight hotel stays, so it has felt like a long month. 

Unfortunately, my mobility and strength have suffered too. Despite feeling really positive up until Christmas, the strength in my legs and arms has dropped off quite remarkably, and we have had to adapt accordingly. 

We've had to move all the food to lower cupboards as I haven't got the strength to put the ketchup back or reach for a tin of sweetcorn. 

Dressing myself is becoming harder, and is more time consuming. Alice now has to assist me, helping with socks, buttons, pulling on jumpers, and tucking in shirts. 

In the bathroom, Alice has to be around when I get in and out of the bath, wet shaving is becoming harder as the dexterity in my hands is pretty poor, and without going into too much detail, the paperwork on the toilet is becoming frustratingly difficult. Don't tell Alice, but I may have a new job for her soon!  For a while, Alice has been wondering how best to move me about as my strength fades so she recently bought a 'handling belt'. The user puts it round their waist and it has lots of loops for the carer to hold onto to help them lift someone. We actually used it this week when I couldn't get out of the bath on my own. Alice clipped it round me and then used the loops to pull me up and out and it was a great success. It certainly felt more comfortable and safer than just pulling on my arms. 

Everything is just so much effort as my muscles waste away, and all the activities that I used to do without a thought, or any effort, now leave me breathless. Then, to top it all off, I caught my toe on a rug, causing me to trip and fall in the bedroom, banging my face on the floor. Luckily it was a soft landing, and the only thing that hurt was my big toe. I was able to get straight back up onto the bed, and as Alice and Fin had both left for work and school, I just got back into bed, feeling sorry for myself, staring down at my throbbing, bruised and swollen digit. 

For the rest of the day, I was pretty low and angry, feeling despondent about the future, but once Alice was home, we had a chat and a hug, and by the next day, I was feeling much happier, and positive. 

In many respects, I am actually very lucky. I am grateful to be so well looked after, for having the freedom and relaxation of retirement, and the opportunity to see so many of my supportive family and friends.

I hadn't seen my mum since Boxing day so we were mutually happy to see each other, as I travelled over to the island. We both have mobility issues so the shuffling of feet on carpet, and walking sticks on tiled floor pervaded the air. We did a lot of talking, drinking coffee, TV and radio.

I didn't realise that my mum was so cool. We were listening to Desert Island Discs on Radio 4 and Nick Cave was recounting his youth, growing up as a punk in 70's Melbourne, and to hear mum singing along to (I'm) Stranded by The Saints was surreal. One day my daughter Rachel brought baguettes, and on another, my sister Lois, took us out for lunch, and a drive along the lovely stretch of coastline between Freshwater and Blackgang, looking out on the English channel.

I was planning to stay two nights, but storm Èowyn, and the consequent cancellation of the boats, meant that I was stranded on my own desert Island for another night. I phoned Alice to let her know, and we were both disappointed, but she had Teddy to cuddle and keep her warm, so she was okay. 

Fortuitously, it meant I could spend more time with family and Rachel, her hubby Max, my neice Alex, and her boyfriend Harley came round for a cards night and brought pizzas.

We played family favourites Chase The Ace and Queens, and an evening of hilarity brought my island sojourn to a close, and as the storm abated the next morning, I was able to travel home. 

My friends Nathann, Mark, and I went to watch Forest Green Rovers play Oxford City in the FA Trophy, and it was the first football game that I have attended as a wheelchair user. I was very well looked after by the Oxford stewards and it has given me the confidence to go to other football games.

We dressed up for a lovely evening meal 

at the Ivy in Winchester with Alice's family, June and Chris, Ellen and Shaun and we drank Bloody Mary's, and enjoyed exquisite food.

The hospital charity published a nice article about us this week which was also shared by the hospital's social media. We're still getting the word out there about assisted running and it's working! Just yesterday, a runner approached us at the parkrun start line, just to say hello and that she'd read our story online. We also read a comment on Facebook from someone saying they frequently see us out running together and now they're aware of why we do it. 

You can read the article here:

Southampton Hospital Charity article

I've been very busy this week with visits from the medical care teams, equipment reps, and a hospital appointment. In fact, the only day I had to myself was Friday. 

My riser recliner chair was delivered, and OTs Bryony and Jade came to see how I was getting on with it. Physio Caitlin brought an ankle brace for me to try, which gives support and helps to lift my feet as I walk, and Sue from the council brought reps from the companies that are installing a ramp, new front door, and my toilet, as part of the adaptions that we are having to have done around the house. The door will have hands free opening and locking, and the toilet, again hands free, will wash and dry me, then clean itself automatically. I'm not sure who will benefit from this more, me or Alice? The chair is very helpful, as I'm finding it hard to pull myself up from a sitting position, and it's very comfy too.

When Teddy isn't on it, I relax in front of the telly with my legs raised, and it can also tilt back for a snooze too - bring me a blanket and leave me for an hour or two!

I attended a hospital appointment for an update on MND Smart, the research trial that I'm taking part in. I have been on the drug versus placebo trial for a year now, and the lovely research nurses Kat and Rolando, asked me to complete questionnaires and a cognitive test, took spirometry values, testing my lung capacity, and documented my height and weight. I've lost a bit more weight and it's definitely not from my tummy so unfortunately, must be my wasting muscles. It does give me the green light to up the snacking though!

Dr Saima undertook neurological and muscle strength and reaction tests.  I also had a few blood tests done and got the kiddy plaster for being brave. 

They also provided lunch, and I didn’t need to be asked twice. I had cauliflower and butter bean curry, followed by a jam doughnut, then Alice wheeled me up to my old office for a chat with my old colleagues, which is always nice.

Speaking of research, Alice has also signed up to a study run by the MNDA called 'virtual peer-to-peer support programme for carers of MND'. Participants are randomised to receive either usual signposting to support or they are paired up with a volunteer who has cared with someone with MND. Alice was randomised to the intervention arm and was paired up with a very nice man called Nigel from Nottingham whose wife died from MND two years ago. They had their first phone call last week and Alice was able to have a very open and frank conversation with him about his own experiences and what to expect as time goes on. She will also have weekly zoom calls with other people in her position. Although I know she's very strong and copes very well, I'm pleased she has had this opportunity and I hope she finds it helpful. 

I was intrigued and pleasantly surprised when three different friends of mine offered to come round to visit, and while I was busy convincing myself that it was my charm, personality, and wit that was attracting people to come and sit with me, Alice burst my bubble, reminding me that in the last blog, I had said that I felt like a prisoner in my own home. What I had failed to say was that I actually like my own company, and I am very happy and busy at home, and I also have Teddypoo to talk to. It was very kind of them for reaching out to me though.

My week ended happily, thanks to Alice's friend Sarah. She has gifted us her mobility scooter, which I am very grateful for. It will give me a bit of independence to get myself to the shops, or on a bus into town. I took it for a test drive with Alice walking by my side, and it was a success so Iook out world, I have wheels!

As we enter the shortest month, and yearn for longer days, you can see that I really am a busy, but happy, and well loved chap!