Thursday, May 6, 2010

Looking for a fight? Thinking differently about Parkinson's Disease

Everyone wants to fight Parkinson's Disease. I've used that pitch myself. But I have come to wonder if "fight" is the word we want.

For one thing, thanks to good science and good care, people with Parkinson's can expect to live as long as those who haven't got it. If, like me, you are in your 50s that means perhaps three decades of fighting ahead. That is an exhausting prospect.

Furthermore, for all the strategy and discipline required of a fighter, in the end fighting is about force and really, how far is that going to take you? What's the plan? Punch Parkinson's in the nose? Good luck with that.

Parkinson's Disease is not a thing or a person. In fact in its most notable aspect it's the very absence of something, dopamine, that causes the symptoms which we are bound by. And even these symptoms are often described in terms of what is gone, what no longer exists, the ability to move freely, to smell, to balance.

To fight Parkinson's Disease is to fight phantoms. This is a terrible form of asymmetric warfare, because though you can't fight phantoms, they can conquer you.

In making our condition into a struggle with a tireless behemoth we run the risk of asking too much of ourselves, and too little. To cast the job of living with PD as a battle with this implacable and, let's face it, undefeated foe, is to set yourself up for failure. Why not look for other metaphors that might be more fruitful?

How might we think of it? We can approach our journey through Parkinson's Disease the same way Phillipe Petit approached his high wire walk between the towers of the World Trade Center. Petit's walk on the wire required discipline, intelligence, courage, and above all balance. (He also threw in a sizable measure of artistry, but I'm trying not to ask too much.)

Discipline is what we must have to deal with the rigors of living while adhering to the routines that our illness requires of us, the pills, the mindfulness in speech, the necessity of knowing when to say no, and just as important, when to say yes. Intelligence? Cultivate a thirst to know all you can about PD. Every fact is a tool to help you live better. Courage? Courage is a tough one. It helps to have others around you that must master the same terrain. That's what the support groups are for. Balance, in the sense of knowing your limits and yet pushing against them is something that we all need to practice. The sooner the better.

Can these skills enable you to live well with Parkinson's Disease? Much depends on you. But they did carry a man through the air high above the hard and busy streets of Manhattan not so long ago.

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