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The Conversation

"How are you doing? Lovely day isn't it?" I had been lost in a storm of competing questions not including the state of weather when I encountered this friend in the corridor. Sunshine apart, this was turning out to be well down the list of my favourite days. "Yes, it's nice isn't it?" I said. Back in the office another friend asked how my appointment had gone. "I've got Parkinson's". "No, you haven't". From an early age we learn to look on the bright side and reassure each other that everything is going to be alright. We are less prepared for the occasions where a situation is not going to improve but we all need to have those conversations at various points in our lives. I had the conversation with my family that evening and I was touched by their love and support. We talked about the pros and cons of letting work know. British law tries to protect the disabled from workplace discrimination for examp...
Recent posts

I Heard it Through the Grapevine

My neurologist is a very nice man. He listens well and is faultlessly polite. It is the sort of job where compassion and good observation are called for and he has both in abundance. I think we get on pretty well. At each appointment he asks me to run through a series of exercises to see how my Parkinson's is progressing. There's "play the piano" - hold your hands level and wiggle your fingers as if playing an imaginary keyboard. The Neurology pianoes were never going survive Andrew Lansley's sweeping NHS reforms as part of David Cameron's government's austerity measures and there is a slight downward trend in the number of organ donations in the UK. In another test he stands behind me and pulls me backwards to see how well I resist. As far as I can tell, he has never made the rabbit ears gesture behind my head or made silly faces. I suppose I don't really know but it doesn't feel like it. This test requires tr...

Shake it Off

It's been an eventful week. On the 15th February 2024, I received an email from Norfolk County Council's Blue Badge Unit to let me know that my application had failed. The refusal was summarised in three bullet points: You do not have a level of qualifying disability or functional loss to be eligible for a Blue Badge. You state that you are able to walk in excess of the Department for Transport’s eligibility criteria. The symptoms of your condition(s) are variable in nature and therefore do not have a substantial and permanent impact on your mobility. I should explain that a blue badge in this case refers to a paper disc that one can display in the windscreen of one's vehicle to indicate a disability that qualifies for use of disabled parking spots in the UK. The first email I have from the Blue Badge Unit is from September 2023 although the saga has run on longer than that. I h...

Black Dog

I used to think that the surest way to kill a conversation was to announce "I work in Computing." Panic would grip my respondent and their eyes would dart around the room like a trapped animal. "Err, I'm just going to get another drink," they might say after hastily draining their glass. They would slope off before latching onto someone (anyone) else. I was wrong. There were occasions where somebody had a problem that they thought I might be able to help with so we would talk for a while at least. In my last blog entry I described how Parkinson's was affecting my concentration and how that was making it difficult to do my job. At the time I was hopeful that I would be able to push through those problems and persevere but it hasn't turned out that way. I've been off sick for some time now as we seek a resolution. I keep busy by doing stuff around the house and garden (you probably would not believe m...

Strange Fascination, Fascinating Me

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 s...

Drifting

Fingers slowly turned to stone, The seed already sown, Today, I see it full grown, A companion I’d rather not known, A life popping pills, Just to try and stay still, To witness the thrill, Of a drink unspilled, Drifting, Reality keeps on shifting, Systems slow, gears grind, A shadow clouds my mind, Well, things could be worse, I had the foresight to marry a nurse, I can still code, When my thoughts finally load, I can live with the dreams (so vivid), A pack of wolves, ran off with my tools. Wild? I was livid, Drifting, Reality keeps on shifting, I’ll be back from the deep, Just need a little sleep.

All You Need is Love

Why do we make art, be it painting, music, film, sculpture, poetry, or whatever? There must be countless reasons. For me, it is about trying to capture something beautiful or otherwise noteworthy that I’ve experienced or maybe dreamt. The most basic aim is to create something that triggers a memory of the ephemera that caught my attention. Better than that would be to fashion a thing that communicates the passion that inspired me to those close to me. If I’ve done a really good job, it may even appeal to those outside my circle. That would be nice but it is, for me, a smaller concern. The thought of putting a smile on the face of one you love is appealing. It’s why we give presents on birthdays and at Christmas. It is part of love. I got a paper round when I was about fourteen. It paid pretty badly but it meant that I had a bit more money at least. Up until then, my Mum had very kindly and judiciously bought Christmas presents on my behalf. That year, I ...