Living well, etc

Mything'  the Point: Some Thoughts on 'Living Well With Parkinson’s'

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 WWW 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. 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 hand basket.

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 there are a few of you 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 have 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 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.

Got to say I agree with pretty much everything you say (only I can't say it as well :-S). 'Do the best you can' makes sense to me. Having parkinson's  is rubbish enough without the imposition of the almost Dickensian view that if  people would  just try hard enough and have a positive attitude, they could  overcome almost any form of  adversity; ergo, if people need support  it's because they have a poor attitude and therefore they are undeserving. Or something like that.

I'll jumble through in my own way and do the best that I can; the current wave of sanctimosity (is that even a word?) doesn't, however, do anything to help. It just makes me feel judged and inadequate  when I feel negative or low.

I know that everybody will have a different 'take' on this - this just happens to be mine.  J

I'm not sure there is a different take Jackson, I see it much the same

Our lives, once diagnosed are laid out much like a pre planned flow chart.

Except if you cant cure PD,then you cant really cure the problems that go with it because that is PD.