Parkinson’s and me.
I signed up early for my diagnosis.. At Med School I was fascinated by the nervous system...But I was the worst kind of hypochondriac and formulated quite a number of wrong self-diagnoses over the following years,…. but when I was just shy of 60 the left arm stopped swinging. Combined with my near complete anosmia, I knew the game was up..
But then, gradually but inexorably, a real “awakening”, began..with things that I hadn’t anticipated, that don’t get described.. pervasive global anxiety.. and emotional fragility, tears abruptly welling up from the chest and overflowing from the eyes..insidious loss of stamina, weakness and exhaustion, that was soon labelled depression.. because loss of enjoyment looks like sadness..and the sweating, dribbling , dripping sweat, even in the palms of the hands, making reaching out a self-conscious act.
And then you’re off.. climbing the “treatment” step-ladder, doses increase , new drugs are introduced Tremulously holding your finger in the dyke , you imagine the dopamine producing cells deep in the brain depleting, on a predestined timetable, condemned without explanation.
But the effects of the drugs are lumpy, uneven and hard to predict..fluctuating like a sine wave. At the bottom of the curve, I am stiff and tremulous. Walking is like wading through an invisible miasmic swamp , the air pushes back, the ground is perpetually uphill. At the top, at the peak of the wave ,all my limbs writhe, and like a frustrated octopus, shocked at the size of his latest utilities bill, I gesticulate incomprehensibly, to the obvious discomfort of others.
Its the most exhausting stage of the cycle. The urge to move is irresistible, pointless, grotesque.. With intense concentration you find you can control it but as soon as you focus elsewhere, it’s back.
So you try to keep the effect in the “mid-zone”.. limit the oscillations to between the two tropics as it were, in the sweet spot, the temperate zone.
Feelings, like smells and tastes, become memories. Some emotions you farewell with no nostalgia. Anger and resentment are buried in the subsoil of your mid-brain, beneath a crust of apathy. Increasingly you realise that the urge to contribute, to participate ,at meetings and “functions”,has been replaced by neutral observation. You catch yourself nodding periodically, without any conscious intention to agree, as if, maybe, by some primitive social reflex, your mid-brain is playing along, to avoid appearing detached.
And of course ,you are warned, there’s the potential for more spectacular, drug-induced aberrations.The longer and harder you chemically stimulate a pleasure pathway, apparently, the more you risk a cataclysmic response. Like poking a hibernating nest of bumble-bees with a stick, eventually you may be stung by a grotesquely exaggerated desire for the reckless pursuit of excitement ,(or over-valued novelty.)
Soon, one realises, you are obliged to start looking round for something to sweeten the deal. A constant diet of the dough of disappointment sits unleavened in the craw, threatening to drag you below the point of no recoil. My sense of wobbly forward momentum is preserved by work.. Less from the clients I get to know, although the capacity of some to maintain hope is admirable, but more from the strong working relationships that have grown steadily over the last twenty years. As my age and overt physical anomalies have advanced I have come to appreciate more and more the respect and warmth I feel from my colleagues, no more obviously demonstrated by the efforts they mede recently to acknowledge my 70th birthday.
My birthday was an event drawn out much longer than the single day and it also served to remind me of how lucky I am to be surrounded by a wife and family who care for me. It was the best, most memorable anniversary that I can remember and I would not swap it for anything.
The future is a foreign land and I must take pains to pack adequately for the trip, to adapt continually to the vagaries of my involuting brain. I believe that some illusion of progress is essential to retaining hope and I take much pleasure in observing the dynamic development of my children and their children. Good fortune has determined that my intellect has not been eroded at a rate any greater than the average septuagenarian.
But nonetheless I’m aware of my subconscious, or maybe more correctly, my almost-conscious discomfort , my own private poke in the ear from an umbrella-wielding Jiminy of my own creation..reminding me that as time passes now the end comes into view with ever-sharpening focus, even though the manner of its arrival remains a mystery. I am more likely to accept the manufacturer’s assertion of a lifetime guarantee.
In the pocket of my sensible denims, ( R M Williams, good quality, they’ll “see me out”) I have a sensible `silk purse.. I made it myself from a sow’s ear I swapped years ago for the handful of magic beans I was given as a child..( I have let go of the belief that I was tricked out of them). I just have to make sure I continue to look after the contents.