07/04/2025 - 'Love locks, sit-down showers and a stiff neck' by David

We have a start date for our house adaptions, which will allow me to live downstairs!

We first applied to the council for a grant to transform a downstair toilet into a wetroom and a conservatory into a bedroom about a year ago, and finally, the builders arrived this morning to start the work. 

It really is necessary for me now as my mobility and strength has deteriorated quite remarkably in the last few months. Alice had to help me up the stairs last week for the first time, and I can no longer get myself in or out of the bath alone. Alice stands behind me on the stairs and helps me up, and uses a handling belt to lift me out of the bath. At the moment, I can offer some assistance for both activities, but there will come a time when I won't have the strength to lift my arms or legs, so a bedroom and bathroom with wheelchair access will be essential. 

Unfortunately I have to report that I have had a pain in my neck for the last few weeks too. I was hoping that it was just a temporary strain but it hasn't gone away, so I think it might be the start of my neck muscle weakness. 

We both knew that all this progression would happen at some stage, but obviously, we want it all to happen as slowly as possible. My voice and swallow are still strong, and I have only sporadic weird feelings in my mouth, so I'm very happy that I can still enjoy my coffee and sing along to the radio.

Also, despite being unsteady on my feet, and needing a stick outside, and a walking frame inside, I haven't really fallen since February, when I stumbled and fell indoors. Hopefully I'm not tempting fate, keep your fingers crossed for me.

That's enough talk of this horrible thing that is trying to take over my life - I won't give in, and will fight it for as long as I can. 

I have been inspired by a number of individuals and groups that are fighting the same fight as we are. We were already aware of the MNDA, Challenging MND, and The Mark Sommerville Foundation, as these charities have helped us, and we are aware of My Name5 Doddie, and Kevin Sinfield's fundraising, but I have recently been made aware of a number of other people raising awareness of Motor Neurone Disease, and the funds to find a cure.

Stand Against MND (SAM for short) was founded by Sam Perkins in 2020, just 9 months after he was diagnosed with respiratory onset MND at the age of just 37. Keen triathlete Sam, from Nottingham, and his wife Emma have so far raised over £250,000. In 2023, he organised the fifty50 campaign, where 50 recruits were challenged to raise £500 each. The name was chosen to represent the 50% chance of dying in the first two years after diagnosis. The campaign raised £50,000 more than double the original target. Sadly Sam died in February 2025, but the charity continues in his name.

Kyle Sieniawski is a Welsh 13 year old boy who was diagnosed in January 2024 and a just giving page was started in his name by his aunt Heather, which has raised over £20,000. There is a Facebook page documenting his journey called Kyle's Story. Rob Burrow's sister is going to run the 2025 Leeds marathon in Kyle's name. 

Artist and performer Ezekiel, was diagnosed in 2000 at 37 years old, and is now paralysed from the neck down and uses an eye gaze computer to communicate. With this technology, she also creates visual art, and has exhibited all over the UK, including the Royal Academy schools. She has written a play called Ms MaNDy's Adventures In Wonderland, given presentations to health professionals, and featured in two films. "I want my story to be told. It is a story of determination, creativity, and hope. I want to inspire people to never give up, however how bad life seems".

Ian Pratt was diagnosed aged 42 in 2012, and he set up the Ian Pratt Foundation with his wife Catherine. It's vision was to bring joy, and put a smile on the face of those living with this arduous disease every day. Ian met Tony Bray through the MND Weekend Wipeout Facebook page, where MND sufferers shared details of their mad weekend activities. Tony wanted to swim the Solent and raise money for charity and after meeting Ian, he chose MND, and the Swim The Solent Ian Pratt MND Challenge was born. This annual event regularly has over 40 participants, and has so far raised over £18,000.

Carlo Van Leeuwin, a Dutch man living in Southampton, lost his father to MND and after the funeral he wanted to do something in his memory. He decided to run the Great South Run for MND in fancy dress. As his father was losing his voice, Carlo's daughter thought he sounded like the Cookie Monster so that would be his costume! The running Cookie Monster is quite a celebrity around Southampton now, and Alice and I have become good friends with Carlo.

Talented English Cricketer and Crown Green Bowler, Mel was given an MBE in 2012 for his services to sport. Mel was diagnosed in 2016, and the Mel Evans MBE Foundation was set up by his wife Lynn, in 2019. The foundation was one of four MND charities that benefitted from Kevin Sinfield's MND 777 challenge in 2025. 

Andrew Davies, an NHS doctor from Hampshire, was diagnosed in October 24. He and his wife Millica, have started a petition called MND/ALS It's 2025 - Let's Crack It! which they hope to take to parliament. They produce powerful and thought provoking videos, and have been featured on national radio and television. 

Sunderland musician Gary Wight, was previously lead singer with 80's band Ill At Ease, 90's band Mojo Pep, and since then, he's formed jazz funk outfit Zubi and released solo material. He was diagnosed in October 2023. He released a single Bound By The Beat in 2025 to raise funds for the MNDA.  

United2EndMND was set up in 2021 to campaign for the government to commit £50 million for research worldwide. It brought various MND charities together to create the UK MND Research Institute in 2023, a network of expertise and resources working together with a single aim of getting treatment to patients. 

Stuart Bates MBE, lost his brother and Richard Brailsford lost his father to MND. They set up Artists Against MND, where creative individuals with a shared belief of the power of art to inspire change, donate their pieces free of charge, and are sold to raise funds for the Darby Rimmer MND Foundation, and the Mel Evans MBE Foundation. They have so far raised over £100,000.

Former Liverpool, Bradford, and Bolton footballer Stephen Darby, and his close friend British forces veteran Chris Rimmer were both diagnosed with MND. Together they formed the Darby Rimmer MND Foundation. Sadly Chris died in 2022 at the age of 39. They organised March Of The Day in 2024, a 175 mile walk from Bradford to Liverpool, calling at 17 other football grounds on the way, and many ex players join the walk. For the 2025 event, they moved south, walking from Wembley to Ipswich. They were joined by Marcus Stewart, ex Ipswich and Bristol Rovers player, who has also been diagnosed. The first walk raised £200,000 and the second walk raised £155,000. 

Ed Slater is a former professional Rugby Union player with Leicester and Gloucester. He was diagnosed with MND in 2022. That same year, he created the 4Ed Foundation, and then took part in the 350 mile Ride Against Time bike ride from Leicester's Welford Road to Twickenham and back. Unfortunately Ed is no longer able to participate, but the challenge continues in his name, by current and former players. To symbolise the urgency to find a cure, the full route is undertaken in 24 hours!

With all these inspirational people in mind, I have decided to create Facebook and Instagram pages called MND Can Get In The Sea, to promote our journey, but also to raise awareness of so many other MND sufferers journeys worldwide. Please go to these pages and share with anyone and everyone, so that we can spread the word, and all know more about the condition. 

I'm still on the MND Smart research trial and I'm certainly getting through a few bottles!

Alice and I had a weekend in Weston-Super-Mare, and we had a great time. It was somewhere neither of us had been to before, but as it had a parkrun, a pier and a long promenade, we were sold on it. After a beautiful, scenic train ride from Southampton to Bristol, via Salisbury, Bradford Upon Avon, and Bath, we changed for the short trip to Weston and the rail staff were very helpful with my wheelchair.

As soon as we got out of the station, we realised that it was very breezy by the seaside, and on the walk to the hotel, we both had sand in our eyes. 

We had an accessible room and we got a taste of sit-down showering which was quite nice!

Saturday was much calmer and the parkrun was literally outside our hotel!

Lots of the Bristol vegan runners, who we have met before, came to join us, and I was pushed to a bakermobile PB by Andy, while Alice ran in front of us.

We spent the rest of the day on the pier and the promenade under lovely warm sunshine and Alice pushed me 6k along the seafront past a lido and around a marine lake. We had a stick of rock as we walked, then I had a coffee on the pier while Alice went off to play on the arcade games. 

We also put a love lock on a big wire heart on the pier.

We got home to discover some mysterious pixies had completely done up our front garden. It's needed doing since we moved but finding time and energy has been difficult! We later found out Alice's mum and friend Matthew (with some help from Fin) had pulled up the weeds, washed down the slabs and bought us some lovely plants, herbs and solar lights. They even uncovered a seat and the area gets lots of sun. This will be a lovely place to sit while the builders are out the back. Thank you June and Matthew!

This weekend we spent a very hectic but lovely few days in Southampton, in the company of fellow vegan runners from all over Britain. Previously we have been to VR weekends in Brighton, London, Nottingham, Bristol and Glasgow, and we won the latest bid to host, beating two other regions and Alice was one of the committee of organisers. It's been a lot of hard work for her, but it all came together beautifully, and over 120 like minded souls seemed to enjoy themselves.

Food and a pub meet on Friday night was followed by parkrun, where Nathann pushed me to another PB of 23.14!

We then had pancakes on the common, followed by a cacao ceremony and sound bath, which was very relaxing, then a couple of interesting talks, and bouldering. We then enjoyed a Mexican buffet, a live band The Radio Makers, and the evening was concluded nicely with an amazing, and breathlessly handsome DJ playing 70’s and 80's top bangers! 😉 

It was a busy day with lots of steps and my legs were tired but I wanted to have a dance during my last record. Unfortunately, towards the end of the track, I felt my legs give way and despite Alice trying to keep me on my feet, I slid to the floor. Alice tried to get me back sitting in a chair but I had no power to help her. Luckily, a friend had noticed and came to our rescue and the two of them lifted me safely back into my seat.

Sunday was the Southampton marathon, half, 10k, and 5k and Alice pushed me in the 10k. We ran for the hospital charity as a thank you for the charity masquerade ball that they hosted for the MNDA recently. We had lots of encouragement and shout outs on the course, which we really needed as it was hot and hilly- the Itchen Bridge proving quite a challenge! But we finished strong and it was good marathon training. 

My son in law Max, has completed his Move For 30 minutes A Day In March challenge for the MNDA. Among his activities were jobs around the cricket ground, nets, and indoor cricket, badminton, cleaning up the garden, walking, running, bike ride, cleaning the kitchen, steps at work, golf, and home workouts. He managed to raise an incredible £360! Well done Maxy Baby!

This Sunday, one of our friends Sue, ran her first marathon in Brighton for the MNDA. She ran with 26 orange and blue MND ribbons pinned to her top, with the names of all the people that had sponsored each mile.

She also asked people to nominate and sponsor a song which she added to her marathon playlist. She completed it in the searing heat and raised nearly £1500! Thank you so much Sue, you are an MND angel! 

Speaking of marathons, Alice has now completed her final long run and #teambaker member Andy joined her for 10 miles. They ran some of it with Andy's pram and two bags of rubble named Barney and Thelma. They reported that the mums on the common were unimpressed by two runners pushing a pram at speed in the heat but it was all good practice for the big day, which is coming round quick!

So now we're preparing ourselves for a huge amount of disruption with the building work starting but we know we have to power through these weeks and it will all be worth it so I can live safely and comfortably. 

With love and coffee, we'll get through it!