23/03/2025 - 'Odd socks and pegs, PBs and creme eggs' by David

At my quarterly appointment with my consultant recently, we spoke about the feeding tube which I will inevitably need at some point, and this week, Alice and I attended a Gastroenterology appointment at the hospital to discuss it further. We we're informed about a couple of different options and the pros and cons of either. A Percutaneous Endoscopic Gastrostomy (PEG), which lasts longer but needs sedation and a hospital stay, or a radiologically inserted tube (RIG), which can be fitted without anaesthetic, but needs replacing after a few months. 

We are aware from clinicians that it is best to have a feeding tube inserted before you actually need it, as some people wait too long before deciding and their condition deteriorates, which in turn, limits their options. With this in mind, we've decided to book an appointment in June, for the fitting of a peg. This will allow me to supplement my oral intake with liquid feed. While I'm still currently swallowing absolutely fine, I won't need to use it, but as I start to find it difficult to eat and drink, we can use the peg more and more, until I'm totally dependent on it for nutrition. Thankfully, in the last few years, a couple of vegan options of enteral feed have hit the market, and if Alice also slips the odd coffee or beer through the tube, I will be well catered for!

As Alice was using up some outstanding annual leave, she was able to join us for the monthly lunchtime MND meet up for carers, volunteers, and sufferers. Because many people in the latter stages of MND need evening care, the lunchtime meeting is always more popular than the evening meeting, so she got to meet quite a few people that she had not met before. One of the couples that we met when we first started to attend these meetings 18 months ago, Terry and Ruth, were there, and it was lovely to see them and hear how they are coping. Terry is now wheelchair bound, has very little movement and is tube fed. He was one of those that waited too long before having a feeding tube fitted, so he has a rig inserted, which needs to be replaced every three months, rather than a peg, which is permanent, and he is so far, on his 21st rig! This further convinced us that we had made the right decision to go ahead with an early insertion of a peg. Terry now has carers in three times a day to move him in and out of bed, and for washing and dressing. Although he's now totally tube fed, he's not yet on supplimentary oxygen in the day time, and is still talking. Despite their situation, they are still smiling, and we were all pleased to see them. We also spoke to Mick, who has recently lost Marlene, and is coming to terms with life on his own. He was saying how he has a whole roomful of her clothes, and possessions that will need to go to a charity shop, which reminded me that I still have lots of books, clothes and general ephemera that I have collected over the years, that Alice will have no interest in keeping, that I need to sort out. I am the youngest of our local group with MND, and also the most recently diagnosed, so it's sometimes hard for Alice and I to see them all in their wheelchairs, some non verbal, some with little movement in their limbs, and some totally dependent on their carer. We both know that this will be my future too, so we ask lots of questions, and are constantly impressed their stoicism and bravery. 

I travelled over to the island for a couple of nights to catch up with the famalam and friends. One of the days was particularly sunny, so mum and I were treated to a lovely day out in the car, stopping at Totland Bay to view the pier and get a coffee, then off to Freshwater Bay to see the stones that the recent storms had washed all the way up the beach and had virtually covered the benches on the sea wall.

We then went for a pub meal, and finally, our trip was completed with a scenic drive through country lanes lined with daffodils, crocuses, and snowdrops. 

We've ticked off two more Hampshire parkruns at Whiteley and Edenbrook, which only leaves Basingstoke and Rushmoor to complete the 26 parkruns in the county. As Alice was doing long runs the next day in training for the London Marathon, we volunteered as tail walkers both times.

At parkrun, you will never be last, because there are always tail walkers who stay at the rear of the field, and offer encouragement to anyone struggling, or conversation to those just out for a nice walk. We were among many that wore odd socks to celebrate World Down Syndrome Day, and many also wore tutus as the date was the 22nd (get it?).

All four members of Team Baker are training individually for our day in the capital, and we have organised a meet up soon, so that they can all have a go at pushing me. Hopefully, by that time we will have our race tops which I have had the pleasure of designing. The artwork and colours represent the sea that MND can well and truly GET IN! 

While Martin has been out training with his partner Natalie, on her bike, threatening him with a spatula, and pushing Ewan brandishing a sword, Andy has been running around his local roads pushing a pram with a bag of compost for weight. It's all true! There really are some weird people around, aren't there!

Anna has gone for the more traditional method - getting your boyfriend to join you and encourage you along, well done Jake. 

In our preparation for the marathon, Alice and I ran the Eastleigh 10k, and Alice was hoping for anything under 60 minutes, as our previous 10k's at Bristol and Glasgow were just over the hour. There was a cheeky hill that Alice had to resort to a fast walk, and at 7k, she told me that she had nothing left, but Alice is made of strong stuff, and through the heat, and without a drink, she pushed me to a PB of over 6 minutes and came in at an incredible 55:32. It's good form in races to run a 'negative split'. To non-runners, this is simply doing the 2nd half faster than the 1st half - not always easy to do when you're exhausted but Alice ran the 2nd half in 26:40 which is the fastest 5k she's ever run with me - what a girl, what a machine! 

It was a great advert for assisted running as all the runners and spectators who ran with us, saw us, talked to us and encouraged us could see that disability shouldn't be a barrier to taking part in a sport that you love. 

As a reward, I let her take me to see Southampton women play Portsmouth women at St Mary's Stadium! I don't think she was too impressed, but she is aware that outings like football games, gigs, theatres, museums, and steam trains, are my favourite days out. She hates football, but enjoys the singing, and watching me get so animated, and upset when my team loses! I did give her a vegan creme egg at half time, and she got her own back by making me watch Gladiators when we got home. 

We've been very pleased with Teddy's outside antics. Since his first escape into the great outdoors last week, he's now been waiting at the door for us to let him out every day. He comes and goes as he pleases and although he can be gone for up to an hour, which can get a bit nerve wracking, he always returns back home and we're sure to give him lots of praise and fuss when he returns. He's loving his new found freedom and whilst we're not always sure where he's going, we do know he's been on the conservatory roof and under the decking! He will definitely enjoy sunbathing with me in the garden this summer.

This week, I received an envelope of £10 notes, with a handwritten message of encouragement for our marathon from the Spinney Quilters, my mother's patchwork group. A lovely donation of £110 will be added to our Justgiving page. Thank you ladies!

We also found out this week, that the Masquerade Ball that the research department at Southampton Hospital organised, raised £1,456 for the local MNDA group.

Our Justgiving page has now raised over £11,000 and fundraising from friends and family in my name has raised over £20,000 which is absolutely incredible!

Alice and I will continue to live our best lives, and continue to raise awareness of, and funds for, Motor Neurone Disease. We would really like you all to do the same, for yourselves, and on our behalf please.

Motor Neurone Disease isn't incurable, it's just underfunded. 💙🧡