MND can get in the sea

Christmas came and went as quickly as ever, as it has done since our children have given up any faith in the existence of the big guy in the red coat and fluffy beard. Waiting for Christmas was excruciatingly slow as a child, but these days it's upon you and beyond you in a flash, which is a shame as I still look forward to and get excited about it, especially since my diagnosis. Alice and I made the most of it though, and we enjoyed ourselves.  We finished our Christmas jigsaw just days before Rudolph and the boys were ready to take flight, but unfortunately, for the first time, with the box empty, there was a piece missing. More of that later.  It was quite poignant wrapping presents this year as I realised it would be the last time that I would be able do so. I wrote a couple of very wobbly inscriptions in books for Rachel and Anna and after a fight with both paper and sellotape, I added the names of my three favourite girls on their presents, and placed th...

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 atten...

November drifted into December last week and significant anniversaries were observed. On November 27th 2007 I started working at Southampton General and on my very first day, I met a pretty nurse called Alice and 17 years later we celebrated by working on a jigsaw puzzle, and cleaning out Teddy's litter tray.  Teddy was 3 years old two days later and he celebrated by trying to eat the jigsaw pieces, or just sitting on the jigsaw itself so that we can't make any progress.  On December 6th we we observed the first anniversary of losing our lovely Frankie. He was a talented musician with a gentle soul, but unfortunately, he never got the breaks he needed. We miss him terribly.  Alice and I attended an engagement party for our friends Anna and Glen, and Kevin and Perry came second in the fancy dress competition, ahead of Freddie Mercury, but behind Adam Ant. They also took to the stage as Elton and Kiki to perform Don't Go Breakin...

Well it finally happened. Unfortunately, I had a fall this week. I knew it would happen one day, and I've been very lucky since my diagnosis in July 2023 that despite a few close calls and wobbles, I haven't actually fallen to the ground. It was quite a gentle fall while I was bending down to turn an electric socket on, so I was halfway down already and my legs just gave way. I fell backwards onto my bum and after a few moments, I managed to sit up, shuffle back against a sofa and pull myself up to a standing position again. Apart from a sore behind, I was OK, but it shook me up, and I was sad for the rest of the day. I told Alice, who was upstairs at the time, and we sat talking for a while about the situation, and after a few tears, we decided that I would use a stick inside, and I requested an occupational therapist to come to assess my needs around the house, as my legs and hands are now very weak.  It was such a shame, as the day before (my fall), I was feeling much more p...