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Reimagining Our Approach to Parkinson’s

Monday September 24, 2018

 

16 years after my diagnosis, Parkinson’s brought me to my knees.

As the months and years progressed following diagnosis, I vowed as a two-legged creature I would never crawl because of Parkinson’s. It was a matter of pride. Bipedalism was a mark of humanity too important to concede to a mere disease. Doing so would hand it an unacceptable victory. Crawling was a craven retreat back over the Rubicon. I was not going to give Parkinson's the satisfaction of humiliating me. 

But a few days ago, Parkinson’s, in combination with severe back spasms, forced me to crawl partway to the car so my wife could drive me to the clinic to get relief. To insist on walking upright was to mercilessly torture myself while inflicting no harm on my opponent. So I crawled. And I got relief.

The dignity I lost through crawling was more than compensated for in the relief from pain and the restoration of my ability to walk upright in a remotely human way.

But what about my vow to never crawl because of Parkinson's? I re-examined the vow from a different perspective. The perspective of a person lying on the floor, unable to walk due to the pain it produced in my lower back. From there, the vow not to crawl looked pretty stupid.

Parkinson’s has no scruples. It doesn’t play fair. It hits below the belt. It has no use for the Marquis of Queensbury Rules nor the finer points of dueling etiquette. You make brave noises about never yielding to this monster, but what is the point? The monster is immune to trash talk. It cannot hear you nor understand what you say. It is a blind force of nature and cannot be treated as less, or more than such. To dictate terms to a force of nature is foolish and futile. 

This is the danger of setting up your post diagnosis life as a confrontation with Parkinson’s. A battle is a tempting metaphor, but is it a fruitful one? In the thousands of years it has afflicted humanity, Parkinson's has ultimately been victorious in every single war declared on it. This suggests the need for a different approach, to say the least.

What if instead of framing our situation as a battle, we made it our goal to live as well as possible with Parkinson’s? This seemingly more modest aim is actually attainable, and a more humane approach for those of us in the struggle. It removes the shame of defeat in an arena where there is little record of lasting success. It leaves open all the ways we have found to make headway against Parkinson's, without the necessity of casting them in a high stakes category of a loss or win against the beast. They are merely tools in our progress to a realistic goal. 

This also has the advantage of reducing stress, a known aggravator of Parkinson's, by removing the context of what we are aiming to do from the high stakes of a war. Instead we substitute the positive pursuit of living well. That seems more reasonable and far less demoralizing than engaging in a losing conflict for the rest of our lives

It also smacks less of hubris, the ancient Greek concept of man usurping the place of the Gods. This was the sin of Icarus who  flew so high on wings of wax that the heat of lthe sun melted them, tumbling him earthward to his death. It takes guts or sublime carelessness to set yourself against the Gods. The outcome is never pretty. 

We should forgo hubris. It doesn’t work, and leads in the opposite direction of where we want to go and how we want to get there, standing erect, our dignity intact.

Peter Dunlap-ShohlPeter Dunlap-Shohl
NWPF Blogger

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