Tuesday, January 5, 2016

Parkinson's, Luck, and Imagination

Here is still another of the monthly posts written for the Northwest Parkinson's Disease Foundation. Visit their website for an astonishing amount of terrific Parkinson's Disease info.

Illustration 1.5.15

I was diagnosed at 43 years old with Parkinson’s Disease. Bad luck, right? I suppose.  I hadn’t done anything conscious to court the disease, and had none apparent in my family history. It was just a miserable turn of the cards. If not luck, what is it that determines who suffers from PD and who doesn’t? What other explanation could there be?

Some people insist it is part of God’s wonderful plan for our lives, all will be understood bye and bye. It’s God’s will that I have a progressively incapacitating and incurable disease? It’s God’s will that I become stooped and drool, my ability to think impaired, my voice inaudible, my movement slow, my muscles cramped and pained? For this the omnipotent and beneficent God has singled me out? For this he has chosen me, for reasons beyond my poor power to comprehend, to be one in a hundred who suffers from Parkinson’s Disease? I honestly don’t get it.

I prefer the bad luck theory. At least, like a mafia killing, it’s not personal.

This leaves us back where we started. There are many ways luck can be sliced and spun. You can try to make a person feel better about their fate by pointing out the mitigating factors. At least you’re “lucky” it’s not one of the Parkinson‘s Plus disorders, with their rapid and devastating disease courses. At least it’s not a brain tumor, a swift and deadly killer. At least we have levodopa, exercise, and surgery to help with symptoms. That is, for a while. And for the ones who have the means to access to these modern wonders. Cheer up! In the big picture, you have lots of little breaks of good luck to soften the hammer blows of the bad.

This is less than comforting. If it’s merely luck, it can and will turn. There is no reason to believe your relative bits of good luck will hold, or for that matter that your bad luck will last. Maybe you will develop cancer, maybe an imaginative scientist will come up with a Parkinson’s cure. But it doesn’t depend on how nice you are, nor how immaculate your life has been. It’s how the dice fall.

Who wants to depend on such a fickle force? Surely there is something else.

Maybe it’s not much, but we do have each other. Human history and civilization is distinguished by the ability we have to blunt the edges of a dangerous, random Universe. We can and do make the journey through life safer, more interesting and enjoyable. Or, yes, we can make it more dangerous and difficult. Because we have the power to imagine the world as different, we have the ability to change it. 

This power seems unique to the human species, at least on Earth. We learn to set the broken leg, to weave blankets for the cold, to coax and improve crops from the earth, to celebrate the joy of life through art. Or we wire the bomb, brew the poison, plot the kidnapping, do the things that make life a more tenuous, precarious struggle. Which of these you do with your time here is yours to choose.
But you do have a debt. If you are reading this, your struggle with Parkinson’s has certainly already been made easier by those who put their imagination and effort into lessening this disease’s destructive power. Caregivers, researchers, fund-raisers, doctors, organizers, volunteers, and experimental subjects have all contributed. It’s what humans do at our best, what makes us unique. Lucky us.


Penny said...

A wonderful piece, well thought out and well written.I too wonder why I should be so " lucky" to have Young Onset Parkinsons - completely out of the blue. What did I do, was their something that I did or, as it came at a particularly happy time in my life was something out there trying to tell me that life wasn't going to be a bowl of cherries. Who knows but I agree with all that Peter has said -got to make the best of what you are dealt!

parkie27 said...

Brilliant piece of writing Peter. You really struck a chord with me in your last paragraph. I constantly peruse the depths of the net searching for the latest information, regardless how infinitesimal, on progress to ridding me of this disease. What I haven't considered are the countless hours others have contributed to try and ease my pain. Thank you for the insight as well as the inspiration. Life is what you make of it.

Peter Dunlap-Shohl said...

Thanks for your comments, Penny and Don. One crucial bit of luck that distinguishes the present moment from the time I was diagnosed is the knowledge that we are not helpless to do anything to affect the progression of this disease. I have seen charts that show that the earlier we intervene with some appropriate form of exercise, and the sooner we are on the proper medication, the more gradual our decline will be. For me, this is the difference between helplessness and hope. Even a small bit of leverage makes a difference, to me anyway. What's awful is being told that there is nothing that one can do but decay, (and Don, is that a bloodhound in your photo? If it is, lucky you!)

parkie27 said...

Thanks Peter. You are partially correct. While my dogs breed does have bloodhound in him, Elmer is actually a Plott hound.