The reaction of most people to a diagnosis of Parkinson’s disease is one of distress. Distress at the darkest imaginings of what the condition might bring. And distress at a future that would likely be much shorter and harsher than anticipated. For many, the diagnosis conveniently divides their lives into pre-and post Parkinson’s.

That was not the case for me.

When I was diagnosed I was, paradoxically, rather relieved. I was aware of the many neurological possibilities that could explain my symptoms and, among these, Parkinson’s seemed the least horrible. Parkinson’s was, in neurological terms, a slow burn. Sure it would take away my capabilities but, compared with other neurodegenerative illnesses, it seemed genteel. Tremor at first, some stiffness and slowness. Not really much to write home about.

Yes, I’ll settle for that I thought.

Yet in that very slowness, almost reticence, of the condition to progress lies some of its greatest horrors. This is no hasty stampede to oblivion, no rollercoaster ride to extinction. No, Parkinson’s takes its time with you. Parkinson’s plays with you. Parkinson’s lets you think you’re winning only to beat you when you can bear it least. You have time to savour each progressive loss of function, each intrusion upon your dignity. Parkinson’s gives you the space to luxuriate in its many little tortures. And all the while, in perhaps the cruellest cut of all, it preserves your cognition long enough for you to fully appreciate what it is doing to you. Like a torturer, describing in detail what will befall you, Parkinson’s shows you glimpses of your future. Parkinson’s lets you peer into your own personal darkness. And only finally, when it has done to you all it can, will it let your mind go, as a cat releases a mouse too injured to entertain.

Parkinson’s does all this and more. Wherever you hide it finds you. Wherever you resist it overcomes you. When you sleep it wakes you. When you would wake it makes you sleep. It controls your bladder and bowels, your dignity and modesty. It tears your muscles till you scream in pain. It makes merry with your darkest thoughts, conjuring spectres to make you weep. It turns dreams into nightmares, hopes into fears, reality into delusion.

And it takes its time. It will make you beg, plead, bargain with it. It holds all the aces.

And yet, faced with all this, I still remain positive. Each day I stare it down and let it know it will not win. Each night I close my eyes and let it know it will not win. I let it know that I will be finished with it before it is finished with me. And I’m not alone. Millions of us around the globe do the same each day in the certain knowledge that, one day, we will look at sunrise on a day free from Parkinson’s. And I will stand, shoulder to shoulder, arms interlinked with my fellow sufferers, with eyes screwed up against the light and reflecting what we have been through to take us to this place.

We will win. I know it with all my head and heart. Everything we endure is merely the price of that victory. And victory will be all the sweeter for it.

The price of victory

8 thoughts on “The price of victory

  • July 11, 2017 at 10:02 pm
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    Wow, no hiding here. What a great contribution to literature, and the world of P.D.it sent shivers up my parky spine. Thank you for verbalizing some my deeper thought and feelings. Casey Huisman
    http://www.parkinsonsomy.com

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  • July 11, 2017 at 9:28 pm
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    Finest writing I’ve seen on how it is to have pd. Thank you doesn’t begin to convey my appreciation. Namaste

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  • July 11, 2017 at 8:28 am
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    Oh how true Jon. Let’s keep fighting in memory of Tom Isaacs who fought every day of his life.

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  • July 11, 2017 at 5:17 am
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    Brilliant blog describing how Parkinsons slowly chips away at everything we know and love about us and our lives! We must keep the light of positivity burning!

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  • July 11, 2017 at 4:03 am
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    Thank you for sharing your thoughts with and for us, PWP. I want to explain to others how it feels to have this disease, but my words don’t capture the contradiction of it all. You tell about the pain and also the hope. No matter how low I go, I can’t seem to quit thinking that one day in my future there will be an answer for how, what, when, where, why. We must keep pursuing the knowledge and hope. Again, thank you.

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  • July 11, 2017 at 12:07 am
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    Great words. Great man. Our hopes will become a reality in our lifetime.

    David

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  • July 10, 2017 at 3:34 am
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    Love you, man. Looks like you wrote a piece about my wife, my PD wife. She shares the same feelings with you.

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