19/11/2023 - 'We got married! (again)' by David and Alice

Back from Blackpool, we had only one night in our own bed before we travelled over to the island to the same hotel where we tied the marital knot six years ago. We met some friends on the red jet who were also travelling over for the big day and couldn't believe it when the steward got on the mic to announce to all the passengers that 'David and Alice are on board and heading to the island to get married again'. This announcement was met with a big round of applause and a few whoops from all on board. 

We decided to renew our vows to show everyone that we will be entwined together, in love, until the end, and Alice wanted to ensure that all my family and friends knew that she would do everything she could to look after and care for me. I changed my shirt but wore the same suit, while Alice wore a boho dress she had picked up in a vintage emporium. We chose the date as it coincided with the day my dad would have been 91, so we raised a toast to him and placed a photo of him smiling for all to see. 

Our good friend Paul, is a celebrant and had us all in tears of joy and sadness. He read a poem by Sandol Stoddard Warburg, called I Like You and the tissues were out. As we confirmed our commitment to each other, with everyone present knowing what lies ahead for the two of us, the tissues were drenched. 

After an amazing vegan buffet, that had meaters returning for second helpings, it was time for our second first dance.

Six years ago, we chose Paramore's 'Only Exception' as it has special significance for us and we decided to use it again,  but this time, as a surprise for Alice, I had arranged for my daughter, Anna to sing it, accompanied by her boyfriend Jake. She sang beautifully, and I was in tears as we danced.

Alice and I had curated a top playlist of all our favourite dance tunes, that we hoped would get everyone up on the floor, and it proved to be so. Our four hour playlist included top tunes from all genres and eras, but no Russ Abbott. Moves were thrown, shapes were made, and some rug was cut, as I danced with my mum, my brother, my sister, my daughters, my wife and my family and friends. 

Alice and I are very lucky to have so many lovely people to share our vows and celebration with and it was a pleasure to spend such a magical night with them. We went up to our room, totally exhausted, but excited for yet another big day on the Sunday!

Our third, in a line of MND fundraisers, was a walk along the seafront from Cowes to Gurnard, a route I have run, driven or walked many times over more than 50 years, and I really wanted to show my friends just how beautiful this stretch of the Solent is, but also how much it means to me. We knew it would be popular as Facebook was telling us that nearly 100 people would be attending our Walk With Me For MND, but we really didn't expect to see over 200 turn up to show me their support, and I was overwhelmed. 

We walked from the victorian fountain to the iconic beach huts and our favourite MND charity bunnies Rob and Cat were at it again with wristbands and cake adorned with charms and toppers representing my likes, waiting for us at the end. Alice and I talked and walked with our family and friends, but also with people that I haven't seen for years, and total strangers, who had heard of my diagnosis and wanted to come and show me that I am not alone on this horrible journey. 

Over £1500 was donated, which is totally unbelievable, and we can't thank everyone enough for their donations and their love, support, kind words and thoughts.

After such an emotional and active weekend it was probably inevitable that my legs would take a few days to recover and unfortunately I didn't have a good week. My legs and hands were weak and my mood was low. I now get easily tired and my routine on bad days is to take myself up to bed early with a book. This week I read the full version of 'I Like You' that Paul read an excerpt from at our renewal service, that Alice gave me as a gift the next morning and also Kevin Sinfield and Rob Burrows's 'With You Every Step', a lovely celebration of a friendship, that they are determined will not be dented by MND. 

My symptoms recently have become more stark, and my strength in all limbs has deteriorated, which is disappointing. I have good days and bad. One day I feel as though I can walk unaided, but then another, I need a stick or a helping hand. Last week, I needed both hands to hold my pint pot, and when I eat, my hand shakes as I bring my fork to my mouth. I am well aware that progression is inevitable, and all I can hope for is time. Lots of it please.

We just never seem to get a day off from all things MND related and it's tiring for both of us. Tuesday night was our regular monthly MND support group and we're now getting to know a few of the regular MND warriors and their families. This time, there was a newly diagnosed man on the call and we could really relate to how he must be feeling. 

Wednesday, we had the specialist physio service out to the house. He gave me a quick once over and reported he could detect the weakness in my legs. They also brought a box of kitchen aids to show me. Lots of things I need my hands for are starting to become challenging so it's good to know these aids exist although it was upsetting to see the reality of all the paraphernalia I'm going to need just to eat my dinner.  

Friday my mood was finally lifted.  We received a beautiful bouquet of wild flowers in the post from our friends Mike and Jane.  We then headed into town with Fin to watch my mother-in-law June singing Christmas songs with the rock choir in West Quay. My little baby girl, Anna was celebrating her 23rd birthday and we met her and Jake for a Cherry Gluhwein at the German Christmas Market in Southampton before I then met up with my brother and friends to relive our mod days by watching From The Jam in concert. 

Despite the rain and feeling tired from a busy week, we still got up early Saturday morning for our usual parkrun. A friend was celebrating a milestone so there were good VR numbers and it was lovely to see everyone. As usual, there's always someone who wants to tag along with us at the back and this week it was Andy B. We enjoyed his company and his conversation proved a welcome distraction up the hills. Alice gives me a real helping hand up the inclines and I would not be able to run at all now without her help. We get lots of positive encouragement and shout-outs on the way round, from the fastest of runners to all the volunteers and it helps to keep me going. I know my running days will soon be over but I'm determined to keep trying for as long as I can. 

All in all, a week of highs and lows. Enjoying experiences with those I love, and then having to accept the sadness of the devastating situation I have been given. 

I will continue this journey of mine with smiles, laughter, joy, sadness and tears, but I know that I am not alone. I feel the love of family, friends, total strangers and most importantly the woman that I have now married twice. My beautiful Alice - loving, strong, kind, and mine forever x