Thursday, August 1, 2013

Facing Forward with Parkinson's

Parkinson's is a disease written as a possessive noun. What it possesses is your constant attention. Wait while I take my noon medication. I am owned by this. But what exactly is Parkinson's Disease (PD) doing to monopolise my very being?

For starters, not being able to move my bowels, without a conscious ritual, of sitting on my throne hoping something might happen. PD effects control of muscle and mind. I go many days, often three or four, without rectum release.  A new way of doing Everything is an inevitability for all body functions. Urination, by the way, happens much too often and not necessarily in my control. Erections, hit and miss. But constipation, bladder issues, and erectile dysfunction are just subplots in the spectrum of daily discomfort.

80% of my required Dopamine has died away, long before diagnosis happens. Dopamine is how we control our muscles, both in conscious and sub-conscious activities. There are the conspicuous arm and leg tremors, havoc when carrying my morning coffee back to my desk. Distracting wiggles and shakes to all while I am talking. But this too is a 'minor' disturbance in my pantheon of symptoms.

I have a full course of muscular madness. Muscle rigidity means my back tightens like a rock, keeping me from enjoying a short stroll or standing to do the dishes. The shoulder pain locks in to the mother of all stiff necks. The legs cramp, as they did as a kid when swimming. The fist clasps tight, leaving finger nail abrasions in my palm. And this is only the early stages, primarily on my body's left side, just a preview of trauma to come. Later medication will lose effect and I will live in a symphony of symptoms on both sides of a twisted frame. Already I feel this happening.

Fear plays into the mix. I have the sensation I am choking, a feeling as if my shirt top is buttoned tight against my throat. Some PD folk must be watched not to choke as they eat, others lose their voice. Muscles are everywhere and all can fail without notice. The fear creates stress and stress accelerates symptoms. PD people must master cool, while in the throws of looking ridiculous. The goal is being relaxed during convoluted physical displays, showing calm when slowly tortured by public embarrassments, or at home humiliation. Learn to swallow both your food and your pride.

As a man, I must now leave my masculinity as some lost remnant of youthful bravado. During a recent traffic emergency, all the men ran to lift a car and move it to safety. I stood and watched, knowing I'd be more hinderance than help. When men help move friends, lifting furniture and boxes, I am conspiculously uncommitted.  Knowing my nights carry the risk of total physical break down, I sadly ignore social invitations. To fix things that require strength, ladders, or power tools, I must drop my manly inclination and ask someone else. I am no longer an independent mister fix-it, but more an incompetent klutz, from chef to cockroach in the kitchen. Beware shaking hands when frying or fixing tea. PD pedestrians can set your house on fire, but mostly we end up in hospital with self inflicted wounds from strategic miscalculations.

But perhaps most frightening, are the psychological implications, apathy, reticence, depression, and gall. My nights are a horrid menagerie of half-conscious dreaming, laced within muscle cramps and emotional outbreaks. I reach for cathartic insights but wobble in self doubt. There is no damn silver lining yet, as promised in every fable with a trial by fire. I yearn for, plead for, some way to hype this into a happy ending. Some badge of courage, mark of greatness, a life of some significance. But, for now, I have to quit typing... the back pain has become too distracting.

Monday, April 1, 2013

Parkinson's Disease

For my sixtieth birthday I bought myself a 50cc scooter. An old man's bike, designed for frugal shopping, a pleasant lift to the bottom and back up a steep incline, to and from my mountain home.

I was no longer facing mid-life crisis, when a man wants the mechanical equivalence of an erect penis. At 60 you want efficiency and convenience. A Harley is for the other guy.

Yet, despite my cautious calculations for cost-effective cruising, when I tried to master the foot and hand shifting on this less-than-sexy Super Cub, my motor skills just couldn't cope... creating a comedy of near fatal errors. The new bike remains now covered and unused, a sad testimony to unfulfilled aspirations.

I initially blamed myself for the clumsy motor skills. Yet there were other subtle symptoms, scattered across my physical landscape. Aching muscles, incorrectly diagnosed as 'gojugata' (50 year old shoulder), essential tremor in arm and leg, arthritic-like clamping of the hand, and other demasculating signs too embarrassing to mention.

I was accelerating into old age at an alarming speed, while being told by my doctor, all was in my head. And... in fact,  all was eventually diagnosed so... because that is where Parkinson's lives, sending inappropriate signals throughout.  Tricking my system into right-side tremors and cramping muscle weirdness, idiopathic delirium of my dopamine.

PD is problematic perfection, a brutal daily adjustment from what once was 'normal'. A cesspool of negatives, seeking some optimistic alternative. A spiritual quest, initially for some explanation and eventually for acceptance, a soap opera solution in my own worse case scenario. A way to eliminate all peripheral distraction, drawing focus on some pitiful soppy play for sentiment.

But this isn't bad theatre, this is my life. And I want to choose my conclusions. I never liked teary-eyed  demises. Parkinson's Disease was never in my plans and now it is poisoning all my subplots, ruining my timing for a Grand Finale... forcing some creative swan-song all too soon.

The script sucks, in a bad need for rewrite. I have Parkinson's and I just can't get my head around it. Yet I have no choice. Debilitating diseases wait for no one. Face it first, accelerating the denial stage into some pro-active mind set. Learn how to survive, maybe even flourish. Right now it doesn't feel possible. But I still may surprise myself.

I am more than a bad ending.