26/10/2025 - Two gold medalists, one wobbly body and a whole lotta love' by David

Alice and I have had quite a hard fortnight, interspersed with some lovely moments too - that's life with motor neurone disease I suppose. 

We are adapting to new challenges at home and the problems that come with them, but there has also been laughter and humour too.

We've been on a 3 date tour visiting the faded seaside glamour of the autumnal south coast, taking in Bournemouth, Southsea, and Cowes, spent precious time with our family and friends, and have met two olympic gold medal winning athletes in the same fortnight!

I thought that losing my ability to walk would be the worst thing in the world but actually, I have accepted and adapted very well to the wheelchair. What is far worse, is the loss of strength in my upper limbs. 

My arms can't go higher than my shoulders, so scratching my head, putting on a jumper, or my glasses, is hard. Sadly, picking my nose is also very difficult! My hands can't cut or spread food, and my fingers cramp up around a cup, or while brushing my teeth. 

One day last week, I noticed a marked deterioration in my hands, and I had a bad day all round. I struggled to get myself out of bed, even with help of both, a profile bed, and handrails. Then I found it hard to brush my teeth, get a jumper over head, and drink my orange juice. Next I struggled to peel a satsuma and drink my coffee. Then at lunchtime, I tried to cook some simple noodles, with a kettle that Alice had already filled for me. As I was stirring them, I spilled some on the work surface, and while eating them, I spilled some more on my jumper and trousers. 

After an outburst of frustration, I decided that it wasn't going to be my day. Luckily, in the afternoon I had a visit from Bryony, my Occupational Therapist, who came armed with a contraption to assist eating, and a slidey mitten to assist in getting sleeves or socks on - perfect timing. Bryony starts maternity leave next week, and Jo is going to look after me, so good luck for the baby Bryony, and good luck with me Jo!

The next day I knocked my wee bottle onto the floor getting out of bed and had to clean it up from my wheelchair, with kitchen roll and my feet! Later, I knocked my milkshake on the floor. I phoned Alice, who said that it was going happen one day, and she did a proper clean later.

After a discussion, Alice has since agreed with her work that she will change her hours to start later in the day, so that she can get me up, get me changed, and make my breakfast before she goes to work.

We knew this was coming at some point but it's still disappointing to have to accept it. At the moment I'm still able to get around the house during the day, but once I can't transfer from chair to chair independently, I will need more home care. We've now done a referral to social services to explore the possibility of getting some carers and I'll inform my consultant of all this when I see him in November. 

How these problems with my hands is going to affect my writing of this blog, is unclear. I can still type at the moment, but Alice has set me up with speech to text and I'm finding this really helpful. I just dictate my messages into my phone and it's turned into text. It saves me prodding the keyboard repeatedly and speeds things up. If my voice goes, we will have to move on to eye gaze technology. There are many apps, strategies, and communication aids available to me, and im having a video consultation with the Environmental Control services next week.

Speaking of gadgets, upon hearing about my puffy feet, my lovely friend Paul sent me an unexpected treat in the post. A plate you put your feet on and it sends up electrical signals which can help with circulation. I started on level 10 but now worked up to 50 - Paul says if I can get up to level 99, I can go as Frankenstein for Halloween. Thank you Paul!

Also, note how a certain Teddy cat has taken a real liking to my zippy chair - sometimes its a fight as to who can sit in it!

The TV coverage of us being the first assisted running team to pace at the Great South Run, mentioned in the last blog, got even crazier this week, when Lewis from South Today contacted us to say that the feature was being picked up by the national BBC news! The next day we were all over Facebook again after they showed it on the breakfast and lunchtime news programmes. It was quite surreal, eating my lunch while watching myself on the national news! We even had ITV trying to get in on the act, but we decided to decline as it has been so hectic, and we've hopefully raised awareness of both MND and assisted wheelchair running. 

You can watch the video on YouTube here:

BBC film

The actual Great South Run was pretty brutal. It's a flat, 10 mile course, which in itself, sounds okay, but as it's in October and on the coast in Portsmouth, it can sometimes be wet and windy, and this year it was!

I wore 2 t-shirts, 2 sweatshirts, a dry robe, and a waterproof over my legs, and was nice and warm, but Alice was cold and wet. Luckily, we had use of a hospitality tent, with hot drinks and food before and after.

We got to meet Dame Kelly Holmes before she started the race, and then we were off. 

Alice, not only had to push me the furthest distance she's done solo so far, but also had to wear a backpack with a speaker, a flag on her back, and also keep an eye on her speed as we were pacing 1 hour 45 minutes. All of this with the bracing wind and rain to contend with too.

As usual, as I have come to expect, she was a star, and through it all, she managed to smile, wave, and talk to runners and spectators on the course, many of who were shouting 'we saw you on the telly!'

My daughter Anna, and her boyfriend Jake, doing his first competitive run, took part, so it was lovely to meet up with them afterwards.

An old uni friend of Alice's also ran and raised £745 for the MNDA - thank you Nicky!

Team Baker also finally got to meet Team Dude, another assisted running team of father and son who we have communicated with for some time now. We saw them at the Brighton half marathon but they zoomed past. This time, we got to hug our hellos, immediately feeling the shared bond. Team Dude have been assisted running long before us and helped paved the way for us newbies. Only gripe... they're faster than us!!

We had a night away in Bournemouth to see jazz funk band, Level 42 and we were on the guest list!

Level 42 are the Isle of Wight's greatest musical export, having UK and worldwide hits in the 80's and 90's, and the King brothers grew up in the same village as I did.

Last year, after handing in my driving licence after my Motor Neurone Disease diagnosis, I sold my beloved Citroën 2cv to a couple on the island, and while we were chatting, we were amazed to find that we both grew up in Gurnard, and when I asked her maiden name, she said it was King, and that I might have heard of her brother Mark.  

Rachel and I have since become friends, and when I said that I would love to see the band on their current tour, she said she would speak to Mark. A few weeks later she told me we were on the guest list at Bournemouth, and I booked a train and an accessable room in a hotel nearby. Train companies in Britain look after disabled people very well and there is always someone to help you on to a disabled area via a ramp, but this time we were really well cared for. Because of engineering work, they were putting on replacement buses, but because the bus didn't have a ramp for my power chair, they booked us a wheelchair accessible taxi all the way from Southampton to Bournemouth, which dropped us off outside our hotel!

We had a great night, going out for a delicious meal at Twelve Eatery beforehand. I rarely drink these days but i really enjoyed a vegan chocolate stout with my meal. 

The venue for the gig looked after us really well and the band were at their funky best - who doesn't love a bit of slap bass? 

The merch stand had the usual array of vinyl and t-shirts but Alice spotted something a bit different... Level 42 socks! She snapped up a pair and I proudly wore them the next day. 

I did another DJ set which  I had planned to be my last set as Alice has to help me at the decks now, and it's getting very hard. However, I looked through my collection and picked out my all time faves, and there were about 40. I get to play about 20 in a set so I have enough for one last hurrah, hopefully in December.

It's the parkrun paragraph so skip ahead if needed! Last weekend, we headed to Netley Abbey and it's a course I've run under my own steam, but never in the wheelchair. It was a bit bumpy on the tree roots and Alice was saving her legs for GSR so it was a scenic plod and it was lovely to see some ex-work colleagues there who remembered me. 

Yesterday, we ventured up to Newbury for their new parkrun in Victoria Park. Our lovely friend Claire was completing her alphabet challenge and it helped us tick off our much needed 'V' too.

It was lovely to see our friend Sue there, wearing her MND can get in the sea running top. Sue was once part of the original marathon line up but a trip to Australia meant she had to run solo at Brighton marathon instead. She had a go at pushing me in my chair over the wet grass which was tough but this earned her her honorary place in Team Baker. 

And of course, these two parkruns earned me a couple more course records, taking my total to 23!

We finished our busy weekend, with a trip to the island to see family, and for a 30th wedding anniversary party, for our good friends Paul and Gina. Paul is a bit of an Isle of Wight legend in the musical and literary world, and lovely with it. Many local, and a few national celebs were there, and we were delighted to be introduced to swimmer and tv presenter Ellie Simmonds, Paul's cousin. She explained that one of her family members had been diagnosed with motor neurone disease, so we had a lot to talk about.

We actually saw her again the next morning, as we were walking along the seafront from our hotel to the boat.

The party was a hoot with the pearly king

of the IOW, Jake giving us a one man band version of a song that Paul wrote for Gina. Jake had written a third verse especially for the occasion, which had us in tears. Next up was a barn dance which Alice and I unfortunately had to watch. How we would have enjoyed that a few years ago.

The evening finished off with a blistering set of dance tunes from an amazing 8 piece band, including Paul and Gina's son, Wilf on the drums. It was lovely to see so many friends that I hadn't seen for many years, and I got to relive many great memories from our younger days.

The party was followed by a stay at our happy place, the Holmwood hotel. Before MND, we would have booked one of the luxury rooms upstairs overlooking the sea front but as I'm now in my zippy chair, we tried out their downstairs accessible room for the first time. They looked after us well, putting out ramps for me and saving me the best table for breakfast. 

It's not easy living with MND and I'm sure it's just as bad caring for someone with MND. Obviously we are seeing it from different angles, but both Alice and I know there is a sad end to this - I'll be gone and she will be a widow in her 40's. 

To this end, we are enjoying as much as we can.

Thank you for reading this, and live life now x