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Lessons From Having Parkinson's

Wednesday May 09, 2018

Lessons From Having Parkinson's

 

”Life can only be understood backwards; but it must be lived forwards.”
~ Søren Kierkegaard


At our most recent meeting I asked our support group members to share one thing having Parkinson’s taught them. The answers they came up with form a core of wisdom around which you could build an introductory class in coping with Parkinson’s. Each member of our support group has their own individual approach to the disease, but I think all would agree on these common points about what they have learned from living with Parkinson's.


The first response was that Parkinson’s, or rather, those that treat it and look for ways to mitigate or cure it, show how ingenious and selfless some can be in the pursuit of helping others. Yes there is awful waste and greed in our health system. But that should not blind us to the brainpower, discipline, and vision that have brought us the treatments and techniques we have available today. When you consider the shape many of us would be in without them, it’s hard not to be inspired, and grateful.


Gratitude itself was an important theme. With Parkinson’s it’s tough not to fixate on what you are losing. Things that once seemed paramount, your job, your ability to care for yourself, to communicate with others, the sheer joy of your body moving with grace and power, are at risk. We all say good-bye to these things someday. But to give them up sooner than we would if we were healthy is a bitter pill. These are not trifling things to have stripped away. And yet, once they are gone, somehow you and the rest of the world remain. There are still things to be grateful for, and a big part of life is knowing this and appreciating it. 


This leads to another theme repeated by several people, Parkinson's teaches humility. Boy, does it ever. From losing bladder control, to stumbling as if drunk, to being ignored because of your unintelligible speech, Parkinson’s teaches humility with a vengeance. Those of us with Parkinson’s have a head start when it comes to recognizing our limits. To know those limits and to honor them is an effective way to minimize wear and tear on your soul. 


And how does one face humiliation? With another virtue that, like humility will be cultivated whether you want to or not with Parkinson’s: patience. Patience must be practiced in the long term, as we can only push science and safety so hard in the search for a better treatments. Patience also must be practiced for the more humble tasks of everyday living. Everything from tying your shoes to eating a meal is more difficult with Parkinson's. What once was second nature now becomes frustrating and costly in terms of sheer energy and concentration required. But these now-difficult tasks still must be performed. How? Patiently. 


Patience is part of the next bit of wisdom our group came up with. We should remember it’s not a crime to be slow. If life is tailgating you, pull on over to the side and let it go by. Our time on this vexing, dangerous, beautiful, beloved World is short enough. What do we gain by racing through it? Stop and smell the roses, those of you who can still smell. If you can’t smell them, you can at least admire their elegant colors. They will bloom and fade whether or not you notice. But it would be a shame to rush past them, oblivious. As one member put it “you think you have a thousand tomorrows, but you don’t.”


Final thought: Those vanishing tomorrows are the sad sort of fact that can only be faced with humor. So we were all grateful to the person who, when his turn to answer the question of what he had learned from Parkinson's, said  “I’ve learned that life is like a Bruce Lee martial arts movie, Only with Parkinson's, I feel like I’m in a Tai Chi movie.”

Peter Dunlap-ShohlPeter Dunlap-Shohl
NWPF Blogger

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