Guest Column by David Schneider
Any survey of publications, conference and discussion topics related to Parkinson’s disease is sure to include numerous references to the importance of maintaining a positive attitude in the struggle to coexist with this condition. The case for optimism often comes under the rubric of “Living Well with Parkinson’s.”
The LWWP claque will tell you about the importance of assembling a comprehensive disease management team of health professionals to deal with your condition. It won’t tell you about folks who have gone 20 plus years without insurance and could never dream of paying the costs of a medical entourage.
The LWWP crowd will tell you about retirement and enjoying the wonders of nature, as for example, in a recent Web posting I read, gushing about the beauty of sunsets in the Bahamas. It won’t tell you about someone with PD, forced to continue working somewhere in the Rust Belt, with the sky “looking as if it had been rubbed with a soiled eraser.”
The LWWP believers will enthuse about an athlete with PD who is planning to run 20 marathons in 20 different countries. They won’t tell you about some guy with gait and balance issues, who, on a good day, is barely able to drive himself to a PD exercise class.
The LWWP adherents will tell you about the need to communicate with family and friends in order not to become socially isolated. They won’t tell you about the caregivers, husbands, wives, relatives and friends whose reserves of patience, tolerance and love are laid to waste by the challenges of living with PD.
The LWWP faction will tout the wonders of cutting-edge pharmacology and invasive procedures such as DBS (Deep Brain Stimulation). They won’t tell you about the risk of long-term cognitive deterioration or the chance that your ability to speak or clearly articulate will go to hell in a handbasket.
The LWWP proponents will tell you a PD diagnosis is not a death sentence. What they won’t tell you is that it is a life sentence.
Assuming a few of you are still with me, I acknowledge that the fare offered to this point is not to all tastes. There are those whose response will be along the lines of “I don’t think this helps,” “There are always going to be people who want to draw attention to themselves,” or “If you are determined to be miserable, then you can certainly expect to live a miserable existence.”
These kinds of reactions miss the point by a wide margin. To my mind, this whole promotion of the idea “Living Well with Parkinson’s” is arrogant and condescending in the sense that if you are not “on board,” your attitude is automatically assumed to be negative, counterproductive and not worthy of inclusion within the parameters of arbitrarily established standards of how to think about Parkinson-related issues.
My personal take on having PD is that getting it is a kind of cosmic joke, and one way to deal with it is through the prism of a kind of lethargic, ironic humor. This attitude may not put me in the mainstream, but it strikes me as a completely legitimate philosophical framework from which to approach many of the challenges related to living with PD.
Furthermore, my stance has not prevented me from consistently volunteering for Parkinson’s research projects, maintaining a vigorous exercise regimen, serving on several advisory boards, and writing articles and giving presentations for purposes of Parkinson’s advocacy. It’s quite possible to pursue these ends without buying into the concept of “living well” with Parkinson’s. I do these things because that’s what there is to do, not out of any overarching sense that these activities contribute to a better quality of life.
“Living Well with Parkinson’s?” Get outta town! In the interests of “keeping things real,” one might be better served by the notions of “getting by” or even “muddling through” in connection to this weasel-like condition.
Bruce’s Follow-Up Notes:
- Thank you, David, for this great, provocative article. Thanks, too, for the short story you wrote (“The Joke Machine”), which I posted recently.
- The picture I chose above has its own controversial background. The sketch of the stooped-over man was drawn in 1886, and until very recently was the first image you’d see if you searched online for information about PD. At the 2016 World Parkinson Congress, there was a photo display based on countering this image; click here to see it (you’ll need to scroll to the bottom of that post).
