Parkinson's is changing my brain. There are a lot of gaps in our knowledge of how Parkinson's works but that observation has been established for some time and is kind of taken as read.
To try and keep this blog light-hearted I often focus on positive things that are going on in my life. A new thirst for creativity has become a recurring theme. It is really positive and I have enjoyed following the path it has taken me. Recently, I've been pausing a little to look back along that path to try and make sense of some problems that are affecting me at work and work out why things aren't altogether hunky-dory.
My work suffered badly immediately after my diagnosis. I read lots of good advice about strategies for coping with PD and I told myself that I wouldn't let it slow me down but there was a part of me that just waved a white flag and gave up.
I think I have mentioned before a weird sense of relief that came with the diagnosis. I suppose the act of finding the root cause of many ailments triggered a similar response to solving a crime, or indeed several crimes. There was another side to that relief too. It felt like some responsibility had been lifted away from me, that not all of the things that had been bothering me were my fault.
As I led quite an active life, my neurologist prescribed a fairly big dose of Ropinirole, a dopamine agonist. The dose was sensibly titrated so that I would gradually get used to it and eventually find myself living a life that was not so different from what I was used to.
Those good intentions backfired when I started suffering from vivid paranoid delusions, a known but relatively rare side-effect of that drug. The mind is a delicately-balanced thing and even a small perturbation can send us spiralling out of control. For a few months I hardly slept or ate and nearly tore my family apart as paranoia took grip. I'm eternally grateful for the patience that they had for me and the guilt will haunt me for the rest of my days.
This all took it's toll on my work. I took a lot of sick leave and was pretty useless on the days when I did work. As I emerged from that fog I returned to some sort of equilibrium. A change of line manager helped. My new line manager was a big believer in coaching. I must admit, I'm suspicious of such things but this really worked. Projects that had come to a dead end were revived with new focus.
I work as a Bioinformatician. It's a hi-falutin title which basically means using information technology to help answer biological questions. It's a job that I can do quite effectively from home and as PD-related fatigue and anxiety have increased I have increasingly sought to work that way. I was able to continue my good progress throughout lockdown and I was hugely proud that promotion started to be mentioned (although it was mainly me mentioning it).
However, as the world resumed after the worst of Covid, I've found myself drifting. Every day I sit down at my computer with the intention of pushing ahead with my job. I like my job. It's interesting. But it needs a lot of concentration, something that I've always taken for granted. The symptoms of PD are many and varied but reduced concentration is one of the most common.
I'm thrilled with the creative opportunities that have opened up to me but pretty scared to acknowledge that the skills that I need to do my job are diminishing. I used to hold various strands together in my head and spend my days translating that into code. Lately I've been finding that I've lost one of those strands and keep having to retrace my steps. It's frustrating and I've become adept at displacement activities such as writing blogs or making music. I'm working on my fourth album in a year while a relatively simple project at work lays unfinished.
I was chatting to a friend about my worries recently and she mentioned that the musical path that I have followed is quite a well-trodden one for those who have had some kind of brain trauma. She told me that she had read Musicophilia, a book by Oliver Sacks (author of Awakenings) that explored this link in detail and found many case studies where people with various neurological disorders have found solace in music. I keep meaning to order it but find myself writing more music instead.
Sorry, I seem to have misplaced the 'light-hearted' for this post!
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