Glitch

In his movie, "Still", Michael J Fox describes the first moment he discovered there was something seriously wrong with his brain. He says, "A moth's wing fluttered against my cheek", and when he moved his hand to brush the feeling away, his pinky finger kept fluttering; it was 'auto animated'.

I turned the movie off at that stage - about 2 minutes in, because the resonation of that image had just given me a self diagnosis that I wasn't yet brave enough to contemplate. It was August last year and the week before we'd been driving to school and that same moth had fluttered its wings on my thigh, where I suddenly found my right hand 'auto animated', an alien. appendage that, despite all the focus I could muster, refused to do what it was told.

I'd not long had Covid (again) and chose to think the tremor was an after effect. I went to the doctor, passed the finger to nose test, the reflex test, the stand on one foot test and I walked the straight line as sober as any judge. But it turns out there's only a few things that can cause a resting tremor. Brain scans and an MRI ruled out a stroke or tumour- something to celebrate. Blood tests ruled out vitamin deficiencies and hormonal imbalances. And so, in the absence of any other possible reason, the doctor, and the specialist doctor after that, and the second opinion doctor after that used the word Parkinson's. I preferred the word denial. Hadn't I passed all their tests?! I tried to prove to myself I was ok by taking on a few extra responsibilities at work. But Parkinson's answers too  many of my random ailments over the past few years to ignore it- anosmia, vertigo, joint pain, restless legs, insomnia, fused ligaments, illegible handwriting :-(

So, here I am, launching this new, shaky chapter of my life, avoiding Dr Google (still in denial) and re evaluating life goals. My pipe dream of living a long, productive life ending in a gentle demise in my 90 yr old sleep, is lost. There's nothing productive or gentle about end stage Parkinson's :-(  

I can hope however that it takes a long time to progress that far and anyway, maybe a different bus will hit me before then. In the meantime, my 366 project takes on a new meaning; I will #makethemostofit. There'll be no more sweating the small stuff for me. I will suffer no more fools or let unkind words or rotten weather ruin my days. I will stop worrying about what other people think of me and concentrate on thinking the best of everyone else. I have plays to enjoy and places to explore and grand children to watch grow. I will continue to get out of bed every morning and do those things - until I can't.

Clearly, I'm feeling very sorry for myself but this is definitely not a plea for pity post - public writing has always been my go to therapy and I simply don't want the stress of explaining the diagnosis face to face or the distress caused to others by me crying when they tell me how sorry they are for me. So far I'm doing fine. My brain is still a disorganised but reasonably creative sieve, and while I have some aphasia, I start with more words than most people so I have plenty of spares. I can still solve Connections and Wordle in under 5 minutes. 

I'm not sure yet how to turn this major negative into a positive but I'm open to suggestions. I can't be a famous Parkinson's pin up like Michael J or Alan Border but I know that documenting illness journeys always adds to the body of knowledge for incurable diseases, and so maybe my story will unfold to reveal something that helps someone else down the track. At the very least I will add my voice to those advocating for greater awareness of, and funding for the disease. And continue to live my very Ordinary Life.