08/12/2025 - 'The old cut and push job' by David

Before I document the latest two weeks of my MND journey, I want to mention two brave warriors who sadly lost their fight last week. 

Kyle, from Pontypridd, was just 14, the youngest person in Britain to be diagnosed with MND. He was diagnosed less than a year ago, and had lived in a hospital bed since January. He showed so much courage, smiling through it all, and playing Connect 4 on his bed with his brother. We have been following Kyle's story on the facebook page 'Kyle's MND story'. Sleep tight Kyle x

Andy, an NHS doctor from Hampshire, lost his fight to this cruel disease just a day later.  He and his wife Milli, led a strong media campaign to not just raise awareness, but also to challenge the government to allocate funding to find a medical breakthrough in MND research. Their Facebook page is 'Milli and Andy's MND journey'. Thank you Andy and Milli for fighting for the MND community. 

The last fortnight has followed the usual routine of hospital appointments, nice days out, disappointments, smiles, and tears. 

I'll start with the nice bits. 

We travelled over to the island to meet up with our friends Claudia and Matt, and we went to a film and a talk about the bears Benji and Balu, the bears rescued from an Azerbaijan restaurant and brought to a wildlife sanctuary in Sandown. They've gone from a small cage with a concrete floor and a bucket of water, to a lovely enclosure with grass, trees, caves, and a swimming pool, and they are loving life. Our running club helped raise funds to bring them over and we've seen them a few times. It was a good opportunity to hear more about their story. Whilst it was hard to listen to at times, we knew there was a happy outcome. 

We went to watch Forest Green Rovers v Southend and were lucky enough to be gifted a hospitality package by a anonymous person or persons. We had a 3 course meal and got to meet the manager Robbie Savage, the owner Dale Vince, the man of the match Kyle McAllister, and the mascot Neville the green devil!

They won 2-1 and we had a great time. Thank you to the person / people who knew just the right treat for me. 

On the way to Gloucestershire for the game, we stopped off at Stratford Park, Stroud parkrun, which was an adventure!

It was damp and windy, and had been cancelled the week before for mud and flooding. Alice knew perfectly that this would be a challenge, in fact on their website, it said that the course was not suitable for buggies - that was just a thrown down gauntlet for Alice! Despite a broken toe that is healing slowly, she powered through on the wet grass, on muddy, hilly, slippy, cambered ground, through the rain.

The volunteers were amazed that someone pushing a grown man could get around the 3 lap course in those conditions, and as there was no previous male wheelchair course record for that parkrun, we picked up our 25th different course record. TeamBaker's, and specifically Alice's, hardest but finest parkrun moment. 

As many of you will know, before my Motor Neurone Disease diagnosis, I was a marathon runner, so thanks to a Delichon running wheelchair kindly donated by Challenging MND, the MND Association, and some of our friends, I can still take part in a sport I love. With the love, power and determination from Alice, TeamBaker have now run 300 miles together. 1 marathon, 1 half marathon, 1 10 mile, 5 10Ks, 2 5Ks, and 62 parkruns. 

I got to record a song with my daughter Anna which was lovely. Months ago, I'd heard my mum reciting an old song that she used to sing in her youth called Golden Slumbers. I had only known the same song by the Beatles with a different tune, so I thought that Anna and I could sing a duet of Paul McCartney's version and add mum singing on the end of the track. Anna's boyfriend Jake has recorded the music, and he's going to add the vocals, so we await to hear the musical product of three generations of our family, or Baker 3G!

We attended the MNDA local group's Christmas party, which was well attended with sufferers, carers, volunteers, and families affected by MND. We came away with a bottle of Bombay Sapphire bramble gin and a knitted hedgehog from the raffle, and the lovely volunteers, who try, but just can't understand veganism, tried their best to supply some food for us. Unfortunately, it was mostly vegetarian, but they did try and were very proud of their efforts (and we're grateful they thought of us).

Luckily I was going out for drinks and an Indian meal with my old school friends later. We had 16 of us together which is the biggest reunion we've had so far.  It was great to meet up with such dear friends, and we roared with laughter all night. I rarely drink but it was such a good night, I even treated myself to half a pint of vegan porter!

Now the not so nice bits.

I saw a podiatrist for my puffy feet. He used a Doppler and said I had good blood flow to the feet, but not great flow back up the legs. Because of my muscle wastage, the capillaries in the feet are dilated causing pooling. If I'm in my recliner, my feet are fine, but if I'm out for more than a few hours, my feet puff up like the Pillsbury dough boy and there's nothing that can be done about it.

I had my MND Smart research trial three month follow-up, and had to report to Kat, the research nurse, that my swallow, speech, and mobility had all deteriorated since our last conversation. The trial drug that they are trialling, Amantadine, is being reviewed in February, so I may be asked to stop taking it. We know it's good for Parkinson's but if it's proven its not doing any good for MND, that's the end of that. 

I asked for my gastro appointment to be brought forward as my feeding tube that I had inserted in June, has been infected three times, and it was getting me down. After mentioning this, and the fact that I'm only using it for the trial drug at the moment, Adam my consultant, agreed that I could have it removed. He said he could book me in for an endoscopy next week or just attempt what's known as a 'cut and push' procedure with no anaesthetic, right there and then in the consulting room! He put on a pair of gloves and produced a pair of scissors, and snipped it off at the base and pushed the bumper back through the hole into my stomach. Alice is a nurse with a strong constitution but was grossed out by the contents that dribbled out the open hole down my tummy, and I was surprised when he said the internal bumper would just be poo'd out naturally! 'Kids swallow lego all the time' he remarked. Even worse, I will now have to return to taking my trial drug orally, and it tastes horrible. Everything has settled down nicely though and I'm finally pain-free. The hole is closing up quickly and now just looks like a second bellybutton!

Alice and I had another appointment with Mary, our hospice Occupational Therapist, and after explaining that I'm starting to struggle with transferring independently from my wheelchair to my recliner or toilet, we've agreed that in the new year, I will need a shower and toilet chair. This will make things easier for me and Alice, but it's obviously disappointing that it is the next step in my deterioration. We left with a banana board (see photo), that will help with transferring from my chair to a car seat. Mary is super helpful and intuitive in knowing where we are at and where we are headed. 

Back on the bright side of life.

We've made a start on the Christmas advent calendars and jigsaws, while listening to our favourite festive songs. We are sharing 5 calendars between us, 3 chocolate, 1 traditional, and 1 with a small jigsaw every day! Fin helps. Teddy hinders. 

I would like to thank two of my oldest friends for fundraising on my behalf for the Motor Neurone Disease Association.  Mave, who has previously swum for the MNDA, has been crafting every day in November, making crumbles, memory bears, Christmas wreaths, embroidering, pickling, dressmaking, and making chutney and jam.

Carl and I have been mates since our school days, and have played in, and watched bands on and off ever since. He has been building superb guitars for a few years now, so I was very pleased that he offered to raffle off his first ever build in my name. The raffle raised an amazing £3,000 and the winner (drawn independently by the website Raffall) was actually our friend Martin, who owns Delichon, the company that made our running chair! Well done Martin, and thank you Carl, Mave, and everyone that has donated. 

Thank you also to my mother-in-law June, who chose to give a donation to the MNDA in lieu of sending Christmas cards and Veronica (who says although we don't know each other), has also chosen the MNDA for her Christmas charity donation.

We can't not mention Kevin Sinfield, who has just completed his fifth annual fundraising campaign for motor neurone disease charities by running 7 ultra marathons in 7 days, all in tribute to his ex teammate Rob Burrow who died from MND in 2024. I, like many of you have been overwhelmed by his determination to help find a cause and cure for the brutal and debilitatating disease that took his friend. When will the king exclaim "Arise Sir Kevin"?

Talking of inspirational people, I've just finished the book 'Devoted' documenting the amazing story of an American father Dick Hoyt, who pulled, rode, and pushed his son Rick, who suffered from cerebral palsy to 72 marathons, 257 triathlons, and 6 Ironman events. It's worth a read, as is 'The Turbaned Tornado', the story of Fauja Singh, a British Indian, who ran his first marathon aged 93, and his 9th and final, aged 101 the oldest marathon runner in the world. He finished with a cheeky 10K aged 102! 

I'll finish with two important anniversaries in the Baker household. Firstly, Teddy is 4! He's a nightmare on four legs sometimes, but we love him.  He has a sixth sense and knows I can't stroke him with my hands anymore, so he comes to me for the back scratcher instead. 

Secondly, it's 18 years since Alice and I first met. November 27th 2007, was my first day at Southampton hospital and ODP Baker met Theatre Scrub Nurse Baker, and we laughed that we shared the same surname. We've not stopped laughing since (sadly not true).  

It's not as important a milestone as 20 years, but I might not make it to 2027 (sadly true). 

Sorry that this installment is very long. You might need two cups of tea and a whole packet of biscuits.

More soon, see ya punks x