22/12/2024 - 'Meeting Santa, winning second prize and an update on my research trial' by David

I didn't write the blog last week because we really didn't do much. Apart from a DJ session where I and the other DJ's played some Christmas related tunes, I struggled to think of anything of interest that Alice or I had done.

I played Stiff Little Fingers version of White Christmas and the Dickies version of Silent Night and I thought I had done quite well, but I was outdone by Darren playing Christmas Rapping by Kurtis Blow, and Tom playing two tunes from his Christmas Tijuana Jazz album.

This last week though, we have both been very busy and Christmassy! The week started with a mince pie party at my mum's on the island. It's a family tradition that has been happening since I was young. Mum would bake hundreds of mince pies, dad would make the mulled wine, and us children were tasked with passing the pies around to my parents friends. These days the mince pies are bought and it's just a small family affair with sadly less and less attending each year. The grandchildren like the chocolate raffle though so the tradition continues for them more than anyone. Christmas is for the children right?

Alice and I love Christmas though so the festivities continued the next day as we attended a party that John, one of our Hampshire Vegan Runners was hosting. He's a professional chef and he served a lovely roast followed by cakes and mince pies. He was using the party to raise money for our local MNDA group and he raised £260. He asked me to provide the music, so I prepared a playlist on my phone of party songs, including some of the best Christmas songs and Alice and I managed a little dance together.

I also asked everyone to privately send me a song title for me to play on their behalf, and after the food we played Santa's Secret Songs! Everyone had to guess who had chosen each song and we had a wide range of genres and artists including Spandau Ballet, Tom Waits, Patti Smith, Arthur Brown, Grace Jones, Linkin Park, The Killers, Tom Petty, Jessie J, Busted, Eurythmics, Kris Kristofferson, B. B. King,

Aretha Franklin. Someone even asked for Superman by Black Lace (step forward Alice!)

The next evening Alice, Fin and I met up with Alice's parents, her sister Ellen and her boyfriend Shaun at a local garden centre which has tended gardens to wander through and they had a Christmas lights trail, with food outlets and it was really impressive.

It was a perfect night for it with cool air and a clear sky and under a full moon Ellen pushed me around the various gardens, beautifully lit with festive lights at every turn. There was a very large led screen amongst the trees, and you could write a message on a laptop, which was then displayed on the screen, lighting up the night, and Alice made sure that everyone present knew that MND CAN GET IN THE SEA!!!

The next day I went to the hospital for the final office charity bake off of the year and Alice and I thanked them for raising £500 this year for the MNDA. 

In the evening, Alice and I went into Southampton to see a touring Christmas Orchestra and they were very good. They played classic Christmas songs from all eras as well as Christmas movie soundtracks to a packed audience and Alice and I really enjoyed it. 

Unfortunately this week, we were caught up in the major water outage that affected 80,000 homes in southern England, and for over 24 hours we had no water. Alice went to work without a shower, Fin was sent home from school, and we had to nip round to Matthew's house to brush our teeth, fill up some bottles, and use the loo! 

We attended a fundraising concert on Thursday for our dear Frankie, who we lost a year ago. His family and friends gathered to remember his talents, and over £1100 was raised for The Frankie Baker Trust, which will support music students on the Isle of Wight. It was very hard for my brother Rich, but we were all there to support him and it was good to see and speak to Frankie's friends.

We stayed over on the island as we had been invited by the local MNDA group to go on the Santa Special on the Havenstreet steam railway to meet Santa!

The night before, Rachel drove me out to see a house that had been decorated in Christmas lights for the MNDA and the air ambulance charities.

We got talking to the owner of the house and she told me that her son Neil's partner Mark also has limb onset MND although his symptoms started in his hands. It was very nice to speak to her about their fundraising and the support available for MND sufferers on the island. It sounds as though it is as good as the care I receive in Southampton, which is good to know as unfortunately there are some people on MND social media sites from other areas in Britain that get very poor support if any.

The steam train ride was good fun and I got to see father Christmas, although he was a bit grumpy. Maybe he thought I was too old?

It was nice to meet some other sufferers and carers, and their families, and we had a nice group photo before we left.

I've also had three photos in publications this week. The first two were featured in the hospital newsletter research department. One for the bake off, and another as I have been on the MND-SMART trial for a year now. It's a randomised drug versus placebo trial and the drug that I might be on called Amantadine, has been assessed for it's efficacy, and after a review, they have decided to continue the drug on the trial which is encouraging. Of course I might be on the placebo but I'm happy to be playing a part in hopefully finding a cure for Motor Neurone Disease. 

The third photo was on the island's local paper's website. It was taken on my last parkrun before my symptoms forced me to start walking, and it came second in the annual photo competition! Alice and Rachel are holding my hands, and my friends Guy, Neil, and Rob are running behind me in support as I am being clapped into the finish funnel by the parkrun volunteers. It was very emotional.

Talking of running, Rachel has joined my friend Andy in signing up for the next MNDA fundraiser to run 31 miles in January, and there is talk of three more joining them. Come on Alex, Harley, and Max, you know you want to! 

With regards to my symptoms, I think they have plateaued recently, which I'm very happy about although I know that I could deteriorate dramatically at any moment like I did about a month ago, which left me feeling low. I can still just about get myself in and out of the bath but everything seems to take a bit longer now, and Alice has had to start helping me to put my socks on and I can't clean my glasses anymore. We've just rearranged our kitchen cupboards so the plates and bowls are low down where I can reach them and there's less chance of me dropping them from height as they are starting to get too heavy for me. However, I am very thankful for what I still can do like walking (just), talking, and swallowing. 

Today, Alice, Fin, and I sat down to watch the Snowman, Father Christmas, and The Grinch Who Stole Christmas with the fire on and the tree lights twinkling, so with just a few days to go, I'm excited, and in the mood for a good old proper crimbo!