14/01/2024 - 'Week 25' by David

Another busy week which included a DJ set, an MNDA support group meeting, a bit of parkrun tourism, and a gig!

Tuesday night, Alice and I joined the monthly online meeting of the local MND Association, and it was lovely to see and speak to fellow sufferers and carers, it's a lovely little community of people helping each other through tough times. The guest speaker was talking about feeding tubes and when to get one fitted. Most MND sufferers lose the ability to swallow and have to be nutritionally fed through a tube inserted into the stomach via the abdomen. At the moment, my muscle weakness is in my limbs, but it is inevitable that at some point I will need a feeding tube, and it was interesting to hear the words of the professional, and also, the thoughts and experiences of people who have tubes fitted already. I asked if vegan feeds were available and was pleased to hear there are. 

Wednesday evening, it was open decks night for at a local bar and I played the following records in my hour slot.

The Bees - Who Cares What The Question Is?

Aztec Camera - Dream Seeet Dreams 

The Lambrettas - D-A-A-ANCE

Haircut One Hundred - Marine Boy

Urban Cookie Collective - High On A Happy Vibe

Perils Of Plastic - Ring A Ding Ding!

Leisure Process - Love Cascade

Deacon Blue - Real Gone Kid

Vicious Pink - CCCan't You See...

Kon Kan - I Beg Your Pardon

San Jose - Argentine Melody 

The Jam - All Around The World

Curtis Lee - Pretty Little Angel Eyes

Animation - Obsession

Wang Chung - Dance Hall Days 

George McCrae - Rock Your Baby

The Questions - The Groove Line

The Piranhas - Tom Hark

David Soul - Don't Give Up On Us

The Sweet - The Ballroom Blitz

Do you know any, or many of them? Probably not I fear. I wouldn't get many bookings if I was a professional DJ, as I play what I want to hear rather than what the audience want to hear. The other DJ's were playing chart hits and getting much better reception, but I believe in these songs, and the one comment that I received from a proper DJ saying that he hadn't heard Love Cascade for years, and thanking me for playing it, made my night!  Once again, friends came out to see my set and enjoy some craft beers (apart from Alice who is doing Dry January).

As the house move looms, I got on and started to sort through some clothes.  I am quite partial to a jumper and over the years have accrued far too many and there are many that sit in the wardrobe just waiting to be shown the light of day. I decided to go through them all in an effort to reduce the clothes that I will take to the new house. About 20 are now back in the wardrobe and another 20 are hanging up in a charity shop. I need to do the same with shirts, trousers, books and records.

Symptom wise, I noticed for the first time this week, that shaving was problematic. I have wet shaved for many years as I think you get a closer shave than electric, but maybe wafting a sharp razor around your face with only a modicum of control is asking for trouble! Also, the hot bath that followed the shave, that was long, hot and full of bubbles was lovely while I was in it, but when I got out, I was totally drained, and had to lie on the sofa for a few hours with no energy. This has happened before, so maybe the hot water affects the muscles. Either Radox or the MND have questions to answer!

So to the weekend and guess what we did on Saturday? parkrun of course! A couple of car loads of Hampshire Vegan Runners, met up with the Wiltshire group to run at Marlborough Common, which was a nice undulating course, all on grass, around a sports ground, organised by friendly volunteers as always. Alice and I ran the level and descents, and walked the hills in 48 minutes. Our friends waited until they could see us on the final stretch and then ran back to join us for the finish while the other parkrunners and volunteers clapped us in, which was lovely

We went for coffee and breakfast to a quirky little cafe that had various animal ornaments and lots of fluffy toys dotted around, so our mascot Kevin the carrot felt very much at home. 

On Saturday night, the band that I have played percussion in, on and off for the last 40 years on the island, played a rare gig on 'foreign' shores so that the trumpet player Carl and I could play to our friends, as we both now live in Southampton. Bobby I Can Fly have played hundreds of gigs over the years and I think we were slowing to a natural end as we are all now in touching distance of 60, but very kindly since my diagnosis, the boys have agreed to play on and raise vital funds for the MNDA, and I am so grateful to them.

We gave out free badges to ticket holders with our hashtag #mndcangetinthesea - in either orange or blue and they were proudly displayed on shirt lapels.

We sold out the small club with 130 people, and they loved us! Apart from a handful of islanders, the majority had never seen us before, so to see everyone clapping and dancing was amazing and quite emotional for me. I heard Max shout out 'MND can get in the sea' during one of my percussion solos which was followed by lots of chants from the crowd of the same, along with 'Go Dave!' and it was hard to hold back the tears. I realise that any gig might be my last so I savour every moment and let the love wash over me.

I was lucky enough to have both my daughters (infact Anna's boyfriend Jake was our support act), and so many family, friends, and ex-work colleagues at the hospital watching in the audience and it was lovely to see so many smiling faces from the stage - I really am a lucky boy!

And not only did everyone have a great night, but we also raised over £600 for the local branches of the MNDA which will go towards supporting families just like us. 

Thank you for reading this blog, as always and I hope your lives are just as fulfilling as ours are, and I really hope that you are loved by as many beautiful souls as I am lucky enough to have in my life x