17/06/2024 - 'MND can get in the... Solent' by David

We had a pleasant start to the week at our monthly MND support group meeting which was well attended and aswell as winning a very strange towel in the raffle, we also had a talk by one of the respiratory physiotherapists, who explained to us about non invasive oxygen therapy and the masks and portable equipment available for when we will need it. We also met a new couple who live 2 roads away from us, so it will be nice to see them again.

My quarterly hospital appointment with my consultant went as well as could be expected. He was neither happy or unhappy with the progress of the disease so I'm presuming that I am just about where someone of my age with ALS MND should be.

I told him that my walking had deteriorated to the extent that I now need a rollater when out on my own, and that I have used a wheelchair on occasions. I was pleased to be able to tell him that my hands haven't progressed with the same pace of my legs, and that my swallow and speech are still strong. I have lost a little weight (4kg), though I still have a good appetite, and he told me that my swollen feet are due to muscle wastage and is a common complaint of his patients. It was again, a good opportunity to see my old work colleagues and Alice accompanied me around the hospital. 

You may remember that after my initial fall in January 2023 that the medics thought it might be cardiac related and I had a loop recorder implanted just under the skin on my chest to record any worrying heart rhythms. After months of no cardiac concerns, and my subsequent MND diagnosis, I have requested for it to taken out. It's a simple procedure performed under local anaesthetic and although it could harmlessly stay there, it states in the literature that the ILR may explode on cremation. Although burial is not a problem, I'm still undecided about my final plans for when I'm gone so although it would certainly bring proceedings to a spectacular conclusion if I'm cremated, it will be one less thing for Alice to worry about at a time when she will have so many emotions to contend with.

I popped over to the island to see the fam and this time I stayed with my daughter Rachel and her new husband Max for the first time. They have recently moved in to the first house that they have bought together and they have made a downstairs ensuite bedroom that has patio doors out to the rear garden. I spent two nights in their company, Rachel prepared some lovely meals, and I was very well looked after. 

On the first day, we went to watch my nephew Isaac play junior cricket and met up with Rich, Vanessa and Erin. On the second, we took my mum out to lunch, followed by a drive out to Ventnor for an ice cream and we were supposed to watch Max play cricket for the Full Tossers, but rain spoilt that so we stayed in, played some records and stroked Mittens the cat.

I received an email from Adrian, my friend and Citroën 2CV mechanic, saying that the new owner of Zippy, after I had to sell due to no longer being able to drive, is very happy and lovingly looking after it. It looks shinier than I ever managed to get it and I'm so pleased that a car from 1984 is still on the road and smiling from headlight to headlight. 

The big news this week is that a compilation cassette and digital download that I have curated has been released to raise money for the MNDA. 

I am very lucky to have so many musical friends and Silas at Chalkpit Cassette Club offered me the chance to ask many of them to each donate a song to this charity project. A wide range of musical genres are represented on the album and all the artists are either from Southampton or the Isle of Wight and I have called it MND Can Get In The Solent, after the stretch of water that divides the two places close to my heart. 

I had song donations from the island bands Coach Party, Plastic Mermaids and The Bees as well as my own talented family musicians, my daughter Anna and her boyfriend Jake and a song by my late nephew Frankie's band, Xockha. My band Bobby I Can Fly are featured as well as songs from band members Paul Armfield and Duncan Jones

Southampton features with songs donated by my brother-in-law Shaun's band 'Dead Rabbits' along with other talented Soton artists including Dan O'Farrell, Teenage Waitress and Four Letter Feeling aka Matt from Hampshire vegan runners. All encased by art work by my sister-in-law Ellen which features the Island and Southampton symbols.

Silas tells me that he had sold 50 copies in just 2 days, so hopefully we can sell lots more and raise much needed funds for the local branches of the Motor Neurone Disease Association. If you would like to purchase a cassette, please do so at Chalkpit Cassette Club -https://www.chalkpitcassetteclub.com/cassettes/p/mnd-can-get-in-the-solent-charity-compilation-cassette

No tape player? No problem... it comes with a link to a digital download for those that have never heard of cassettes! 

Sorry that this is such a short blog this week but we are busy packing and sorting for our cruise of Spain and France, which we are so excited for and is so much needed in our busy lives. 

Oh, and by the way, this MND Can Get In The Sea blog has now passed 30,000 reads which is so gratifying for Alice and I as we document the hope and hopelessness of this terrible situation we are in. Mostly UK, we've had views all over the world including 2.5k reads in Hong Kong! We love having you all along on this crazy ride with us x