vivdunstan

Really great progress on the new French chromatic button accordion today, with my first go playing some of my own arrangements of favourite tunes with the sheet music sitting in front of me. Until now I’ve been focusing on my tuition book, trying to learn the unfamiliar to me grid of dozens of buttons instead of the piano type keyboard I’m familiar with. So today’s challenge was to read the sheet music for some of “my” tunes, find the notes on the button grid and play them right, in sequence. Went so well! I played Sunrise Sunset right through, with up to three note harmonies on the unfamiliar keyboard. To be fair I’d tried it by ear before, but I was so much more assured with the sheet music, despite the still new to me button grid keyboard. Also played some Allo Allo, Pirates of the Caribbean theme, and the opening of my Poirot theme arrangement in progress. All reading the sheet music then finding the right note(s) on the button grid. And at a decent speed. With left hand chords too (easy bit!). So chuffed. Adore my wee French box, and it’s helping me more generally neurologically. Even if the piano accordion is still my main instrument.

And yup, I probably need a second accordion icon here, this time for my chromatic button accordion rather than my big piano accordion ...

Rediscovered the handwritten notes I’d written late last year while pondering what chromatic button accordions would be best for me. In the end it was upper end of that price range, to get an excellent built from scratch French one with great reeds. I went with a slightly tamer sound than the musette I’d pondered, for me who would be doing tons of repetitive basic exercises, and hitting wrong notes a lot! I was rather torn between musette and swing tunings, but swing was the right choice. And the default Rouge Passion Dauphin 60 bass was my choice of box, which is a *gorgeous* colour. On downside I had to wait 6 months for it to be made from scratch, and then slowly get to me in a post Brexit customs situation. But I absolutely adore it, and it is unexpectedly helping me recover more general right hand control I’d lost due to my progressive neurological disease. Absolutely worth every penny.

Just paid and fully registered for the SHARP book history conference which this year is streaming online via Zoom with recordings and catchup available. So good for chronic illness disabled academic me, who sleeps up to 18 hours a day now from progressive neuro disease. Also great for time zone differences, and zero infection risk. With luck I will be able to watch lots, if not always live.

Today is International Vasculitis Awareness Day. I’ve been living with cerebral vasculitis since age 22 in 1994. Here’s something I wrote about living with an invisible and fluctuating neurological illness. https://vivsacademicblog.wordpress.com/2018/10/21/dealing-with-an-invisible-and-fluctuating-neurological-illness/

I’m undoubtedly neurologically flaring again, for the 6th time after a Covid vaccine. Fortunately no terrifying headaches yet, and my limb control is still pretty good. But I’m having an enormous problem battling sedation - it feels constantly as though the shutters are closing down on me. And my bladder control is appalling. Not a good combination to be dealing with. But comfortable as can be. This will probably get worse before it gets better - it’s very likely, for example, that I’ll start getting horrific headaches. And it’s all likely to last for 3 months.

Pleased to have managed a little accordion practice this afternoon, though very light headed from my neuro disease and struggling with normally automatic things like bellows control! After that I've been updating my sheet music arrangements on my computer. Here's a photo of my workflow today, transferring changes noted on the printed version of my sheet music to music notation software program Notion on my Mac laptop. Sometimes I also have a mini USB keyboard plugged in, to work out harmonies, holding it up accordion style. And yes the fountain pen is a key element in this. It's a Pelikan M200 Green Marbled with EF gold nib swapped in, and Diamine Chocolate Brown ink. That combination can cope well with the printer paper I print my sheet music in, and is sturdy enough that I don't worry about it dropping off the music stand (hasn't happened yet!).

There is a recorded version of this tune on my Twitter feed today. It definitely needs more practice, especially the middle portion. But given how light headed I was this afternoon and how hard I was having to work at things that are normally automatic I'm happy! At least my fingers were being cooperative, and seemed to have a better idea of what to play than me!

May is Vasculitis Awareness Month. Here is my story of living with cerebral vasculitis for 28 years, in my case a progressive neurological disease, albeit one we can slow down. Primary cerebral vasculitis is particularly rare, about 1-2 cases per million. https://www.vasculitis.org.uk/living-with-vasculitis/vivs-story

Current main reading, late March 2022 edition.

More Wheel of Time fantasy, neurology with Oliver Sacks, a guide/memoir for Tokyo, an anthology of Doctor Who Master stories, Scottish ghost stories (rereading a book that terrified young me), and more Traveller RPG columns.

Of these I’m settling in nicely to the Wheel of Time book now. Gobbling up the neurology book quite quickly. The Tokyo book is delightful. The Master anthology hasn’t started well, but apparently gets better later. I’m spreading out the ghost stories, for my own sake! And the roleplaying game columns continue to delight.

Today is #RareDiseaseDay2022 I’ve lived for 27 years with a 1 in a million neurological disease, primary cerebral vasculitis. Here is my blog post about some of the implications of living with a rare disease. #RareDiseaseDay