Sunday, May 30, 2010

It's June, Let's eat!

Hello Friends, Can it be? I think it's... YES! Time for the annual picnic. We've had a year to recover since the last one, so the moment has arrived. Put your best feed forward, and step up to the plate. Once again Pam and I will grill some buffalo, you bring whatever you think you prepare well and enjoy eating- it's potluck roulette at the casino cafe!

Here is the essential information

Who: Anyone with an interest in Parkinson's Disease and an appetite
When: Saturday June 19th, 3:30 in the afternoon
Where: Pam and Pete's palatial Parkie Playground, 9601 Elmore Rd. That's just South of the intersection of Abbott and Elmore Rd.
Please alert us if you plan to come so that we have a rough idea of the amount of food we need.
Questions? Call 350-9691
We hope to see you there!


Friday, May 14, 2010

The Sound of the Man Working on the (Bicycle ) Chain Gang

(Above, a picture of me sent by friend Scott McMurren. It was shot from his car when he happened across me aboard my recumbent. In his typical kindly way, he titled this "Riding Nerdy")

Although I am crazy about bicycling, my earliest memory of riding is not a good one. I was maybe six or seven and was just learning on my sister's hand-me-down royal blue Raleigh. Before me, the open road. Behind me, my mom, running as I pedaled, her hand gripping the saddle to steady me. Only... what's this? Applause? That's Mom clapping! That can only mean there is nothing holding me up! Exactly like Wile E. Coyote walking into thin air off a cliff, when I became aware that there was nothing holding me up I went down hard.

I've had numerous spectacular falls since then, including one that left my right cheek impaled by an old rusty aerial from a car radio, and another when I smacked into a woman who was sharing a joint with her boyfriend on the path down from West High hill. And now that I have Parkinson's Disease I expect to fall from my bike frequently.

Yet I don't.

Even more mysterious than the human ability to balance on two skinny tires while hurtling forward is doing this while your movement is compromised by Parkinson's Disease. Recently a small sensation was kicked up by a report that a Dutch man with advanced PD was barely able to walk but rode his bike six miles per day (you can see him tremoring up a storm, then riding his bike here)

This is a case where the patients are way ahead of parts of the medical community. I doubt this news shocked Davis Phinney or Doug Bahniuk, or any of a great number of parkies who pedal.

Like them, I feel freest and most like my old self when on a bike. But what I didn't expect was all that biking could restore.

Lately I have been struggling with my voice, partly because new settings on my deep brain stimulator seem to interfere with my brain's vocal centers. My speech can quickly deteriorate into rushed and indecipherable syllables. And my singing, to use a decipherable syllable: Oy!

So I was surprised when about 45 minutes into a 2 hour ride yesterday when I found myself singing in the saddle with better pitch and strength than I had been able to muster for months. I easily warbled "Pancho and Lefty", "The January Man", and host of other songs from my personal hit parade. When I launched into "Poisoning Pigeons in the Park" I envisioned a full-blown musical. In the show-stopping big production number the kids on a passing school bus joined in with four-part harmony on the chorus while a trio of street-corner inebriates doo-wopped and a bevy of meter maids high-kicked in between writing tickets. All this only slightly marred by gasps for air.

That exercise can at least temporarily improve PD symptoms is confirmed by exciting work done by Dr. Jay Alberts of the Cleveland clinic. But it's one thing to read about the amazing research results that Dr. Alberts is reporting, or even to see video. It's quite another to find yourself flying ahead on two skinny tires, singing your fool head off, and held up against all belief by an invisible hand.

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.