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DIGITAL HEALTH MONITOR

Who cares? Well, plenty of peeps

Following the demise of yet another valiant attempt by my intrepid PD medical support team to dream up some labyrinthine cocktail of L-Dopa and assorted agonists that could offer muggins the semblance of a baseline quality of life, it was back to the drawing board again yesterday as my specialist explained some of the remaining chemical pathways on offer.

While at one point my vocal capabilities had improved to near-Kamahl levels on the swoontastic scale, by yesterday however I had unwittingly won at least three John Merrick voice imitation contests. Odd, as I had no idea someone had put my name down to take part but also a bit weird for such a specific talent-show to be conceived of and staged in the first place.

img_20200122_191032Bit niche interest, if you ask me. Perhaps it was one of those ‘vivid dreams’ many PD pilgrims seem to have at some point during their PD careers.

Asked during my appointment whether I’d had any hallucinations, I reassured my wonderfully gentle PD nurse, “Nah, nothing interesting.”

“I might phrase that a bit differently on the form,” he smiled, noting down some data on the checklist we tend go through before being allowed to enter the hallowed inner sanctum for my audience with the Neurologist. (In jest, I actually like, trust and respect my current specialist)

“In terms of managing the compulsive behaviour aspects, on a scale of 1 to 5, how would you say you’ve been managing those?” the next question exploded.

Flummoxed and growing increasingly worked-up and inaudible, I struggled manfully/pathetically to convey my bafflement at being asked this question for the first time here, and in such a matter of fact way at that.

Was it not on the files somewhere that this pressing issue had in fact razed to the ground the very last remnants of my erstwhile life?

Had the question not been relevant on previous occasions? Was this vexed bugbear, that overbearing obscene and sinister bane of my life really going to allow itself to be caught in the matrix of these cold ongoing stats and records?

I tried to ask, ‘Do you mean you’ve heard of any management strategies that have a hope in Hell of succeeding in terms of dealing with my own particular set of powerful peccadilloes?’

vvvMy heart sank through the floor – probably all the way down, down down, deeper and down  – when the answer to my admittedly quite unintelligible quandary proved to be a wholly superfluous overview of the various possible compulsive behaviour side-effects of most, if not all, PD drugs.

“It could be gambling, or over-spending, or hoarding, or …”

The mind boggles. But then again, all through the day I’d noticed a cavalcade of friendly faces indicate ever so kindly they hadn’t a clue what on earth I was stammering about.

Yet let’s end on an upbeat note. For the first time I’d allowed myself to be optimistic as I had to admit the now aborted meds trial had in fact shown some real promise. However, I had to pull the plug again as I ended up unable to move when I knew I needed to, leaving me once again prey to any real hazards as well as my own recent addition of a fresh selection of anxiety-induced fears & foibles.

Meanwhile I knew my fail-safe lifesavers, a small plastic container containing the contents of the instant remedy to any current calamity, i.e some Kinson tablets, were – in theory – within easy reach in the front-left pocket of my shorts.

img_20200130_174753But having just frozen up without any real warning ahead of time, it was physically impossible to manipulate my arm, even to just slightly lift up my T-shirt and grab the small pillbox. And yet I could drive .. but drive where?

Call me old-fashioned but somehow I don’t think stopping a random pedestrian in his or her tracks to urgently plead with them, “Sorry!! Would you mind reaching your hand in my pocket to get my pills?!! As quick as you like!?” would have met with a favourable response.

Then I remembered how nearly all proprietors and staff working in and around the bright lights of Wamberal CBD by now had grown accustomed to my at times rather noteworthy and erratic comings and goings.

In particular the friendly couple A. and T. at the newsagent’s had been very supportive, almost right from the start of my shaky sea-change. And as Lady Fortuna would have it, I was able to park right in front of the shop.

Spotting no punters at the register, I hopped like a scarecrow on acid right around the desk towards T. who immediately asked what it was I needed?

img_20200216_152923Interestingly, sometimes even while being hurled into the vortex of one’s descent into any kind of private inferno, it’s still possible to count the odd blessing. Because my speech was still outstanding at that time, I had no problem whatsoever explaining to this kind lady in a succinct and very clear fashion the extent of my panic-stricken conundrum.

Half an hour later, after taking my medication while enjoying a cold drink and a lovely chat with T. covering the vagaries of life and such, journalism and travel, work/life pressures as well as the travails involved with having to cultivate that pesky concept of acceptance in the face of inevitably changing life circumstances, I was able to perform my chemical magic trick and dance gracefully back to my car to get my wallet. I shimmied back into the shop quick-smart to and pay for the drink and thank this kind soul for lending a hand and so much more.

img_20200213_052928

One might well say it doesn’t take much to help a fellow stumbling pilgrim. And perhaps that’s true. However, a kind gesture – no matter how large or small – by someone who sincerely cares can truly make a world of difference.

It’s bound to become a long-treasured memory; that sense of security and safety slowly taking the place of panic and anxiety as I began to feel the L-Dopa kicking in and breathed myself back to the world of the living – all the while safely ensconced in an armchair hurriedly fetched from the back room by T. who quipped lovingly about her husband’s mild hoarding tendencies.

A few regular customers came in during that brief spell. One of them, T. said to me, had instantly offered to drive me home. Who cares? Well, plenty of people it turns out.

Next time more on caring, carers and the cared-for. For me it’s a startlingly fresh Brave New World of acceptance, reluctantly but inevitably bidding farewell to emotional creature comforts such as dignity, rectitude and independence.

But the other side of the ledger will also show some unexpected novelty items for those willing to discern them. I’ve seen the vaguest outlines of fair dinkum empathy, a pathway to patience, and even a smattering of Agape and resignation start to appear on the plus side, although this listicle of newly acquired transcendent assets is unlikely to keep up with the ongoing cascading fickle and haphazard additions my unwanted accountant intern Bloody Mr Parkinson’s keeps jotting down whenever I least expect it.

.. that funny, creaking but eminently comfortable chair in that gorgeous community hub/newsagent’s/oasis of humanity and kindness. You don’t need to worry though A.

I managed not to break it. It lives to linger yet another day in the backroom. 

It did come in handy after all ..

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