I Can’t Escape Myself

If this is not pleasant to look at, imagine how I feel!

At first I was uncomfortable going out, but now I don’t let it bother me.

Whilst transacting business; whether I’m buying groceries on maxxed-out credit cards, or attempting to get assistance from my friendly Centrelink office; I feel compelled to explain myself. “It’s okay, I’m not on meth,” my voice softly reassures, punctuated by sharp, inconsistent breaths and the occasional glistening of drool, collecting at the corners of my mouth, “I’ve got Parkies,” all the while wriggling uncontrollably, my face contorting.

I refuse to live as a recluse. I want to be independent, or at least, some sort of independent.

Maybe, a pleasant, symbiotic type of individuality, with my significant other. Hmmm! Queue Marzie.

I jokingly refer to my lady as, “My sugar momma.” The truth is, if I’d never been diagnosed with Parkinson’s, I’d most likely never have met her. It may be difficult to believe, looking at the video above, but overall, life’s been good, in spite of the dyskinesia and my rapid decline.

In the last month, or two, I’ve noted some changes to my balance, motor function, speech, facial expression, cognitive function and of course, the dyskinesia and dystonia. Chronic anxiety has been the ruin of me in regards to all of the symptoms, except the dyskinesia, which is a symptom of my medication nearing it’s useful threshold – and it is bloody exhausting!

My inability to cope with my debts, compounded by the loss of my job and the barrage of barriers put in place by the Department of Human Services left me at near breaking point.

Luckily and I do mean luckily, I have had great support from Marz, my parents, kids, family, in-laws and some good mates. I really don’t know how some people manage to survive, because I’m sure I’d be either institutionalised, or dead now, if it weren’t for the kindness of these people.

For as long as I can remember, I’ve felt fortunate, even blessed, to have so many great people in my life. I’ve never been able to understand the good-will extended to me and I feel undeserving of the love. I am slowly learning to accept help, something I was never very good at.

It’s a good thing too. The fact that I’ve managed to adapt, change my mindset, throw out the self-constructed protocols and societal paradigms, imposing their bleak shadows across the vast, empty expanses occupying the space between my ears, has been pivotal to my development and a bit like Chinese water torture……painfully slow.

Working in an industry I found to be enjoyable overall and even stimulating, was something of a privilege, but in the end, it’s all just a means to an end. Chasing the big shiny sign with the parallel stripes. I don’t deny that money is important, but it’s not going to do me any good if I die in the pursuit. It’s just, in my old life, I let my job define me to a large extent, as I’m sure many people do.

Remuneration is a big motivator, but there are other benefits associated with being a valued member of a workplace. The trick has been moving on from that. Finding another focus. Something important.

My health.

When I say my health, the goal is maintaining some quality of life and slowing the effects of this insidious passenger.

Unfortunately, this passenger will not get out and barring a miracle cure, he’ll be riding with me all the way to the terminus.

And now, ladies and gentlemen for my next trick, I‘ll need some help…….maybe, a dedicated team of medical professionals, my family, my friends and my Marz.

Why? Because that’s what we do. We‘re born, we live and we die. We don’t always get the ending we want, but that bit in the middle is too precious to give away. I’ve got too much to live for.

So, while my medication is only buying me 20% of a day, where I’m not irritable, or feeling like I’m getting zapped by a Van de Graaff generator, or looking like the video above, the next best option, so I’ve been told, is deep brain stimulation.

D.B.S. involves having a couple of holes drilled into your skull and some electrodes implanted into your brain. This is best done while you’re awake, so my neurologist says, for your cranial pacemaker to give optimum results. And it is only going to cost around $30,000! The price of a family car – and with no guarantees – even if the operation is successful.

Literature explaining the procedure states psychotic episodes may be a result, along with a few other potential glitches. Quite the sales pitch! Who should I call in the event of this happening? My neurologist, or an authorised service technician?

It looks like the escape committee has a new plan to tunnel out of here….it’s going to be another interesting year.

Merry Christmas!