MND can get in the sea

We did it! You will be pleased to see that we have finished our latest jigsaw, but not as pleased as we are! Our friend Guy, bought it for us as a Christmas gift, and he either doesn't do many jigsaws, or he really doesn't like us that much, because it was so hard. There is so much greenery and brown(ery) which meant that it took far longer than usual, and many hours of frustration before we finally, and thankfully put the last piece in this week.  On Tuesday night, I travelled to Reading to watch the mighty Derby County. For any non football fans reading this, yes, I am being facetious when I say mighty. I started supporting Derby as a 7 year old in 1972 as they were the champions of English football and had a charismatic manager in Brian Clough. They won the championship again in 1975 and I thought I would be supporting one of the best teams for the rest of my life - oh how wrong I was! Derby have spent a few years in the Premier league, the majority of seasons i...

The Rockbiter: (holding up his hands) They look like big, good, strong hands, don't they? I always thought that was what they were. Oh, my little friends... the little man with his racing snail, the Nighthob, even the stupid bat. I couldn't hold on to them. The Nothing pulled them right out of my hands. I failed. Atreyu: No, you didn't fail. I'm the one who failed. I'm the one who was chosen to stop the Nothing. But I lost the Auryn, I can't find my luckdragon, so I won't be able to get beyond the boundaries of Fantasia! (A crash is heard) Rockbiter: Listen, the Nothing will be here in a minute, I will just sit here, and let it take me away too. (Holds up his hands again) They look like good strong hands don't they? (Atreyu nods sadly) Along with one of the saddest moments in film history, when Atreyu loses his horse Artax in the swamp of sadness, and one the cutest moments when Falkor, the luckdragon asks Atreyu to scratch him behind his ear, maybe the ...

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...

Happy New Year to all of you reading this blog! New Year's Eve for Alice and I was a quiet and reflective one. We had an unexpected family bereavement last year, and I got diagnosed with a terminal illness, so we had nothing to celebrate, and as such we were in bed at midnight listening to other people enjoying themselves outside. Life after our dear Frankie will go on, as it will after my passing too, so I hope you had a good evening and best of luck for the year ahead x. Alice and I completed the festive double at parkrun, by running (shuffling) on New Year's day followed by a gingerbread latte with vegan whip afterwards at Star*ucks, before we returned home to start our new jigsaw which features our own faces (which is equally satisfying and weird!) I am enjoying retirement, however it is so new to me that I still feel that I'm actually on annual leave. We were recently talking to a doctor friend of ours and she said she was wo...