22/12/2025 - 'Last train to London' by David

One of the activities that I can no longer do is wrap Christmas presents. I hadn't given it a thought as last year, my hands were still strong. I was having such trouble that I asked Alice to film me trying to wrap my mum's present, and it has so far had 3000 views online. With Alice's help, we got the presents wrapped, and I've scribbled on the cards with my feeble little mitts. The end result is not unlike a child's handwriting.

It would have made comedy viewing on wrapping day as I had been taking in multiple deliveries over the month of Christmas presents and Alice had been stockpiling all the parcels in my bedroom. Unfortunately they contained some of her presents and I was unable to open any packages so we had to devise system whereby Alice would open a parcel and then hold it out to me with her head turned so as not to see anything. I'd then instruct her what size paper to cut, she'd put the paper up on my table all with her head turned. I'd then cover the present with the paper enough to hide the item and Alice could then wrap and sellotape the rest. We had a good system going and no presents were seen. 

I'm just about managing to open the advent calendar(s), and piece together the Christmas jigsaw(s), but unfortunately, for the first time, I wasn't able to stand and decorate the tree. I watched Alice and Fin, pointed a lot, and was in charge of the music. After playing a boardgame recently, I also realised that shaking the dice, and moving my counter around are on the 'not to do' list.

Some days I feel stronger than others, and one day I just couldn't lift myself off the toilet, even with the rails, and had to shout for my live in carer - I'm sure I know her from somewhere? 

I can't walk at all these days, although I can just about stand and shuffle with someone's assistance to get in and out of a car, or from my seated shower to my chair 

Talking of the chair, I've souped it up with a headrest. As the muscles in my neck are starting to weaken, it has started to ache, so the first of a number of chair additions available has been fitted. 

The site of the feeding tube that I had removed recently after infections, has healed perfectly and I've actually put weight on, which has pleased everyone.

It looks like I have an extra belly button now, but it's much nicer without the tube, and I can turn over in bed much easier. 

The dietitian came out to see me and we discussed my diet, appetite, and swallow. She was happy with my weight gain, but I told her that I am constantly swallowing saliva, and starting to cough more when eating, so they are going to monitor me.

I'm glad that I'm still able to chomp and chew my food, as I'm not looking forward to being peg fed directly in to the stomach. I'll be well nourished, but I won't be able to taste chocolate, cheese, chips, coffee etc, etc, etc, ever again.

The latest problem I have is getting food into my mouth. My arms and hands are very weak so I either use both hands to get a spoonful to my mouth, or ask Alice to feed me. I'm also using a straw more and more for my coffees, which was initially a bit weird, but like all of my symptoms, I will have to adapt. 

Unfortunately, it's not just physical problems that I encounter. Dementia can be associated with Motor Neurone Disease, and I've certainly noticed that my memory, and my ability to find the right words at times, have both deteriorated in the last few months. One of Alice's favourites was me trying to find the name of the art gallery and calling it the painting museum instead. 

 

We had a nice little trip away to Bath and bathed in the natural spa water which was lovely. The spa had treatment rooms where we had a lovely massage, and also a rooftop swimming pool, which was very impressive. All areas were wheelchair accessible, with a winch to get me in and out of the pools, and we coped very well.

The calming and peaceful music in the massage room was hilariously interrupted by the rough tones of a man and his guitar at the Christmas market on the street below. Just as I was drifting off to the soothing sound of pan pipes, gentle piano, and soaring strings, he bellowed 'It was Christmas eve babe, in the drunk tank' - quite surreal, but it made us both smile.

We also did a Bath mystery guide. We had previously done the Southampton one when I was still walking but as the website said it was wheelchair friendly, we set out to complete the puzzles and managed to actually solve all the clues correctly! There were cobbles and a Christmas market to navigate which were okay but unfortunately the big reveal was in a place (no spoilers!) with a step so Alice had to go in and take a photo for me. 

Being in a wheelchair really makes your see the world differently. We tried to visit a cafe we had found online which claimed to be wheelchair accessible only to find a step. Alice asked inside if they had a ramp but the staff just shrugged so we left hungry and disappointed. 

Another trip which wasn't planned was a train ride to London. 

We had been invited onto the local BBC news programme for a live interview as a follow up to our recorded piece about assisted running back in October. It was being filmed within a museum in Basingstoke, and we put our best togs on, but we had a bit of a nightmare trying to get there.

We told the platform staff at Southampton station that we would require assistance and a ramp at Basingstoke station, and he said he would ring ahead to alert them. Unfortunately when we got there, no ramp or guard were there, and as Alice was running around on the platform trying to get help, the train pulled out with me still onboard. I wasn't too worried as I thought that I could get off at the next station and catch a train back to Basingstoke, however I was on a non stop service to Clapham Junction in London.

Alice and I spoke on the phone and she said that she had told the BBC, and that the rail company would put me on the next train back south and we might just make it to the filming. Unfortunately, it was a day of awful weather, and there was disruption on the network with fallen trees and flooding. 

The train staff got me to Waterloo but it was chaos with delays, cancellations and changes of platforms, and I told Alice that I wouldn't arrive back in time. Luckily, my daughter Anna and her boyfriend Jake, who live in London, came to look after me, got me some food and drink, and stayed until l was finally on a train. 

Alice and I were reunited in the late evening and the rail company paid for a WAV taxi home, but we were so angry and disappointed. It was worse for Alice, as she had to sit on the station platform for four hours, worried about me. At least I had a little trip out, saw my daughter, and had a steakless pasty.

We have written a letter of complaint to the rail company, and the BBC want to feature us again soon, so the adventure continues...

We've had problems of the electrical kind in the house too. For a few weeks we've had periodical power cuts and it has taken multiple visits from Alice's dad Chris, and his mates Dean and Matt, eliminating every wire, socket, and fuse until they discovered the fault.

After days of tools everywhere, extension cables, mess all over, and a hole in the kitchen floor just days before Christmas, we returned to find our house warm, safe, and tidy. Alice's mum June had very kindly been in and cleaned up the mess. 

I played my final DJ set recently and quite a few friends turned up to listen, which was very nice. Unfortunately, due to my Motor Neurone Disease, I can longer pick up and play records with any effective dexterity so after requiring Alice's help at the decks in recent months, I've decided to hang up the headphones. I went out with an hour of my favourite records and I'll just be a listener from now on.

My brother Rich came over to spend the day with me, and we had a really nice day in the cafe's, restaurants, shops, and the Christmas market in Southampton. 

We also enjoyed a Christmas lunch with our running club friends. Originally the plan was for us all to sit upstairs in the cafe but as getting up steps is impossible, there was lots of thoughts bandied about as to how I'd get up there. One of our friends is a fireman so a fireman's lift was considered, as was carring me up in my wheelchair by 4 people like a chariot. In the end, we were split into two groups and we sat downstairs. It was an afternoon of food, friendship and laughter. Alice helped me with my lunch but it no longer bothers me to be fed in public as I'm used to it (as are my friends seeing it). I'd like to say it's less messy but I did still end up with some in my lap!

As you have read, the last few weeks have been joyful, stressful, and full on, so we were very thankful for a bit of impromptu reiki from our friend Charlotte - it really did the trick. 

Thanks to Delia from my mum's patchwork group, who donated to our Just Giving page recently, and thanks to my friend Andy, and also the Hilldene sewing group, who donated the money that they would have spent on sending Christmas cards, to the page. All donations go to the Motor Neurone Disease Association. 

Thanks also to Sandra, one of our friends who just happens to be a medical doctor. Her Christmas present to me was bottles of Omega-3 oil, vitamin D tablets, and some creatine powder. I was really pleased with them. Not the most exciting present I know, but what use is a Raleigh Chopper to me now?

The MNDA have been very supportive of me and my family since my diagnosis, emotionally and financially. Recently they fitted a ramp at my daughter's house, and yesterday we all went on the Santa Special steam train ride with other MND families - Choo Choo!

We have my daughters staying with us for Christmas this year so I'm very excited about that. 

Christmas means different things to different people, and is generally seen as an exciting celebration, and I'm sure it is for some. I was very lucky, and my recollections as a child, were Christmas's full of wonder and love. But not all children are so lucky.

In adulthood, Christmas can be a time of stress, reflection and sadness, thinking of loves and lives lost, so look after your friends, family, and even strangers around you, this year.

Season's greetings to all, and please be kind.