15/02/2026 - 'Making every day matter' by David

Does anyone like January? Not many of us I'm guessing. I was certainly happy to see the back of it. I remember last year that my symptoms deteriorated remarkably just after Christmas and I feel as though the same has happened this year. Maybe it's the January blues, or the amount of rain we've had, or maybe it's just a coincidence, but it has hit me pretty hard I'm afraid. 

Over the last few weeks I have noticed that my arm and finger strength has reduced and I now struggle to lift the duvet up to my pillow at night, or make a cup of coffee during the day. The things that I used to never think about like brushing my teeth or scratching my head are now monumental or impossible tasks. I have a back scratcher that Teddy and I share. I use it to reach an itch, and because I can't bend down and stroke Teddy any more, he likes a scratch under his chin - who doesn't? 

My legs fare no better than my arms, and though I can still stand, I can't then lift my legs to move, which makes transferring from chair to chair problematic. Our new toy from the community Occupational Therapists, the transfer aid, has made a huge difference, but comes with it's own problems. It's cumbersome and hard to push, and Alice has to watch her back as she has to pull me up onto it. Luckily, I can still assist in helping her to get me to my feet, but that won't be for much longer.  

Alice has made a video of us using the transfer aid around the house, and it's had about 25000 views so far! See it here:

Standing aid video

Teddy certainly doesn't like the transfer aid as unfortunately we ran over his toes or tail while moving around and he squealed and ran upstairs, poor thing. He's now very wary of it (understandably) and makes a quick exit when he hears it's wheels turning. 

Overall, I'm actually quite happy about the rate of my progression and I've had months where my symptoms have plateaued, but knowing that I can no longer get myself to the toilet is demoralising. This, and the fact that the next step after a standing transfer aid is a hoist is not a joyful prospect. 

I attended my latest neurology appointment, where the doctor assessed my strength and I was pleased to hear that although my limbs were weaker, my neck and tongue were not yet obviously affected. Some movement like lifting my toes scored 0/5, leg lift 2/5 but neck and shoulders were a solid 4-5/5.

I have my respiratory and my speech and language appointments coming up soon. My neurologist has suggested I'm not far off using non-invasive ventilation at night so I'll report back with the results soon. 

I've given in to daytime TV! I always have my lunch while watching the BBC news at 1pm, and have previously found something of quality to watch on catch up afterwards, but I've been sucked into watching and sometimes snoozing through the mildly interesting series' that they show in the afternoon.

I now know that someone might be able to find my mobile phone if I drop it in the lake, that there is a team of reporters intercepting the scammers that are contacting me, that a british chef can cook french food in France, and I know exactly what to look for if I want to buy a house in the country. 

The Motor Neurone Disease Association, which is the leading charity funder for MND in the UK, and the recipient of the majority of our fundraising, has had a rebrand of it's visual identity, with a new logo and brand colour. They have chosen to change the orange and blue colours to a deep red / terracotta with a fingerprint imagery representing the individuality of every persons experience of MND and the strapline "making every day matter"

They have also launched a five year strategy with bold ambitions to find tomorrow's treatment, to influence high quality care, and to ensure everyone with MND gets the support they need, when they need it. Last year, they gave out £4 million in grants, some of which me and my family have benefitted from, and they have committed £1.5 million over 5 years to MND-SMART, the research trial that I am on.  Hopefully the financial boost from the MNDA will help to find a cause or cure

Have a look at their new look website here:

MND Association

I had my research follow up appointment with the research nurse Kat at the hospital and she assessed my lung capacity and how much I could exhale and although my numbers were a little down, I was still in the safe range. The trial called MND-SMART adds and removes drugs depending on their efficacy and I've been on the trial for two years now. Kat reported that the arm I'm on has now closed to recruitment while they analyse the findings and also that I'm the only person at UHS still attending face to face appointments.

It seems my muscles are not the only things to give up on me. My veins seem to have suffered the same fate due to poor circulation. Kat tried a couple of times to draw some blood but it was a struggle so she had to call for reinforcements and a couple of very nice nurses managed to get some out of my hand. Not all bad though as I got the kids plaster and a vegan donut to make up for it!

I've also had a visit from Tori from Oxford Specialist Disability Services who came to assess my need for equipment around the house to assist me. She mentioned voice activated heating and lighting systems, and aids to enable use of a mobile phone, computer or phone TV remote once I lose all hand function, but for now she left me with a better eating aid than I previously had, which has made a difference. 

We've had a nice weekend away with our friend Andy in Southend. None of us had been there before, and we enjoyed ourselves. We met up with the Essex vegan runners for a parkrun at Chalkwell Beach and had a lovely breakfast afterwards. Because we only had my power chair, I volunteered, in fact it was my 50th time volunteering at parkrun.

Alice and I then had a ride on the train along the longest pleasure pier in the world, at an amazing 1.33 miles long. We both like piers and I like trains so Alice had a good time and I had a great time, Andy declined and took the bus back to the hotel.

On the Sunday, Alice and Andy took part in the reason we were there, a marathon around a multi storey car park! 

Having run a marathon around and amongst the exhibits at the Tank museum in Bovington, and an underground marathon in the military tunnels used in world war two in Portsmouth, this was just another crazy way to spend a Sunday morning for Alice. With 9 ramps up, the elevation was equivalent of running up Snowdon. Apparently though, the 9 ramps down were just as bad with the jolt on the body. Though broken, they both finished and we met some people we already knew and also made some new friends. 

I sat in my power chair for six hours watching them all passing me on their 63 laps, which sounds a bit boring, but it was actually good fun. I nipped off for a coffee at one stage, Alice kept bringing me snacks, and the sun was shining on the top floor of the car park, as I got to know and cheer on lots of runners. A number of them came up to me afterwards to say how my encouragement got them through some really tough moments during this mind and body numbing challenge. I thought back to all the teachers, coaches, managers and volunteers that had encouraged me around running tracks, football pitches, and triathlon and marathon courses over the years, and felt proud that I was there for them. 

Alice made another video, this time showing how we navigated the London underground system with a wheelchair. See how we got on here:

YouTube - navigation London

We've had so much rain in Britain since Christmas, which has stopped me getting out as much in my power chair, but I was very lucky that the trip to watch Wycombe Wanderers at local rivals Reading, that we had tickets for was the only sunny day all week. Although we lost by the odd goal in five, my brother Rich, my nephew Isaac, and I enjoyed an exciting game. I was well looked after by the stewards, and the view was from a higher vantage point than pitch level for a change.

I also got out travelling to in our pursuit of doing every parkrun in Hampshire and Basingstoke was our final event to do.  Because Alice was nursing a couple of niggles ahead of her marathon, our friend David pushed me around a muddy course, followed by breakfast, of course.

There is a new parkrun at Highcliffe which is now our new NENDY (nearest event not yet done) but as it's classed as Dorset, Hampshire is now fully ticked off!

I had a lovely present from an ex-colleague who now lives in Greece. It was a bundle of greek goodies which were very tasty, a cd of greek music, and a lovely card and letter. Thank you Madeleine.

Thank you also to my sister in law Vanessa, my nephew Isaac, and my friend Alex, who all completed the Run 31 miles in January challenge for the MNDA. 

That's about it for now. I've had enough of all this rain, but spring and lighter evenings are coming soon.

p.s - Alice and I have nearly the same haircut now she's shaved all her hair off. She's wanted to do it for a while now and I'm hoping it makes her even faster pushing me in the buggy 🤣