Back from the undead

It happened again just last Friday. We were at an opening for a show of collaborative drawings and paintings by my friends Joe and Catherine Senungetuk. I hadn't seen either in quite a long time. Catherine noticed a difference "You look so much better!" She exclaimed. It was not the first time I'd heard this since the operation, but I especially took this instance to heart. Catherine is trained as both a nurse and an artist. When she says I look better, chances are I do.

She struggled to put her finger on what the actual improvement was. Everything from my color to my affect came up. Attempting to sum things up, I offered the description "More... lifelike?"

Catherine guffawed, and we moved on to other topics.

But there have been many similar observations. My dental hygienist was delighted with the new me, "You actually smiled!" She reported as I settled into the chair. And my neurologist offered the supreme compliment "I haven't seen you looking this good in years." All of which is music to my ears of course, except for one disturbing implication.

After a while the repetition of these words of encouragement from so many different people brought me to an inevitable conclusion: I must have looked like crap before the operation.

Curious and apprehensive I put the question to my family. Wiley was quick to offer helpful info. "You looked like this, Dad" he said, curling his shoulders forward in a slump. His arms hung limp and still in front of his trunk. "Like a zombie" he added.

We had a brief argument about exactly what a zombie looks like, but there was no escaping the larger point. It can't be good to look like anbody's idea of a zombie.

Sad truth, as a Parkinsonian, you're not even going to be a good zombie.

CUT TO: Townspeople barricaded in home. Our hero, John Strong parts a drawn curtain and squints through

Strong: "They... they are coming."

Joey, 13-year-old neighbor: "What do we do? what do we do???"

Strong: "Well, the ones that aren't frozen in place are shuffling incredibly slowly and falling down. Let's heat up some dinner, then catch a nap, and then think about fleeing."

I can hear the test-audiences nodding off and snoring as I write. So I'm glad to be a former zombie. But to all of you who stood quietly by me while I went through my b-movie monster phase, thanks for putting up with me, and believe this: You'll always look great to me.

Better living through Parkinson's Disease

ABOVE: A typical person with Parkinson's altruistically escorts a Boy Scout across the street.

Are you industrious, a straight arrow who is detail-oriented, a bit risk-averse, and perhaps rigid in personality? Sigmund Freud might call you "anal", but a modern neuroscientist would suspect that you might be a person with Parkinson's Disease.

Leave it to PD to make "anal" sound like the more desirable diagnosis.

Other "Parkinson's Personality" traits mentioned by doctors who have extensive contact with Parkinson's sufferers include drive, ambition, altruism and cleanliness. There is a nice look at this phenomenon by the Boston Globe here.

In past conversations with people who work with Parkinson's patients, I have asked why anyone would go into such a depressing and frustrating field. Frequently the reply was that as a group we Parkinson's patients are an unusually pleasant lot. What's more, recent research found that People with Parkinson's Disease are less prone to lying than the average Joe. The study claims "Patients with Parkinson's Disease are indeed 'honest', and that this personality trait might be derived from dysfunction of the prefrontal cortex." You can find the whole abstract here.

Now consider: If you put "honest" together with "industrious", then toss in "altruistic" and "clean", you've got a fair approximation of the Boy Scout Law.

Which leads us to the startling question "Is dysfunction making me a better person?" And since PD is a progressive disease, will I get even better as I get worse? More altruistic? More ambitious? Cleaner? And how do you measure something like ambition in Parkinson's disease?

The height of ambition for me to get from the bed to the bathroom when I wake up in the morning. It takes a while for my meds to kick in, and until they do, I can only shuffle inches in the time it takes other people to go from bed to bathroom and back. In fact I got lapped this morning by my wife who passed me twice on my trip there between 6 and 7 a.m. (OK, my Parkie honesty compels me to admit that was a joke. And not only that, my "risk averse" side is pleading with me to take it out. But my altruistic side wants you to have a laugh...)

The implications here go way beyond Parkinson's disease. Assuming the world would be a better place if people were more honest, should we cheer the demographic reality that many more PD cases will be on us as the boomers enter their declining years? And will we have to stop calling them the declining years, and instead refer to them as the "inclining years"? Will con men start faking Parkinson's Disease, the better to win the confidence of their marks?

And if all that's not enough, what is going to happen when word gets out about how you can take off unwanted pounds by tremoring and involuntary spastic movement? Yes, I cannot tell a lie.

Parkinson's Disease is slimming.

Shivering Penguins! This blog is a year old!

"Troubles Overcome are Good to Tell" -
Italian Proverb, from the writing of Primo Levi

Yikes, this blog is now just over a year old! The first post went up January 19, 2008. In the following time we've looked at everything from the Greatest Parkinson's Love Story Ever Told, to some of the dumbest things doctors say, when delivering a diagnosis of Parkinson's Disease.

Since I installed a hit counter about two weeks into the project, "Off and On" had a total of 2,695 visits (only half of which were me checking for comments) from 66 countries and territories all around the World. There have been visits from every continent but Antarctica, where the penguins are all in denial "Tremor? Nah, I'm just shivering, you idiot."

Here is a sample of visits from unexpected locales tallied for the year by my hit counter: Israel (8 visits), Malaysia (7 visits), Singapore (7 visits), Turkey (6 visits), China (4 visits), and let's not forget Iran, Bangladesh, Belarus and Jamaica, with one visit each.

Wow. Parkinson's Disease: Bringing the world together.

I hope, dear reader, that this has been valuable to you. It has certainly helped me to cope. Writing is a sort of deliberate thinking. It is a focused exploration which simultaneously creates ideas and reveals them. When I try to explain my thoughts and feelings to you, I come to understand them better myself. Or at least, it feels that way.

Just as important, your comments and even your silent visits, (which are currently running between 5-15 a day) tell me that there is solidarity and understanding out there that reaches around the Globe. That is heartening. I'm sorry that you who read this were dragged into the struggle, but it is good to know we do not struggle alone

What does the future hold? Dangerous question, but I can go at least this far: More trouble and more telling. Because not only are troubles overcome good to tell, telling is part of the overcoming.

Patience Pending

We people with Parkinson's are mavericks. We not only march to the beat of a different drummer, sometimes we don't march at all. In fact our theme song should be "I Ain't Marching Anymore" by Phil Ochs. Go with the flow? Not us. No flow, no go.


As members of a culture so manic that it has been forced to slice time into nanoseconds too small for any human to even perceive, we are the dissenting minority. While others multi-task all around us, texting their overfilled to-do lists to their partners while crashing their cars, we struggle to single-task, spending the morning buttoning our shirts or not tying our shoes.


This is role none of us are cut out for these days. Patience cannot be ordered over the Web and then delivered the next day in a brightly-colored Express envelope. Instead, we must learn it. And how do we do that?


Slowly.


Fortunately, we have many opportunities for practice. We spend countless minutes waiting for our meds to kick in. Dopamine brings a rush, but you can't rush dopamine.


Crossing a room can take on the quality of a major expedition, complete with danger. You may be in a hurry, but your feet are on their own schedule, and frankly, they're tired of being ordered around. They will get you there in their own sweet time. Push them too much, and you're going down hard, pal. They'll stick to the floor and you'll topple to their level with a thud that frightens everyone in the vicinity, with the exception of the mutinous extremities themselves. They're already safe on the floor. It won't be them that feels the pain. I don't know a single person with Parkinson's who has injured a foot in a fall.

So you learn not to rush your feet. They have the upper hand.

You want to practice patience? Try removing the cap from the bottle that holds the pills that enable you to take the caps off bottles. Hours of fun. The irony alone will amuse you for eons. Which is how long it will take to get to the pills.

The ultimate exercise for developing patience is the marathon wait for the cure. I remember a friend who bitterly observed that he had been assured that a cure was no more than a decade away. That decade has passed, and so has he. But bitterness sours the present for the sake of an uncertain future. So we need something to do instead of waiting. We have to work in the present to advance the progress toward the day when we can get back in the rat race with everyone else.

I'd love to just stop and smell the flowers, but ever the pranking poltergeist, Parkinson's even takes your sense of smell.

Sign #237 That there is something amiss with health care as we know it:

Parkinson's, a disease that deprives us of dexterity is treated primarily with... teeny, tiny pills.

My Own Cato

Clouseau moves warily through his silent apartment. His sixth sense tells him danger is poised to explode, and it could come from anywhere. Every narrow hallway, every closet door, any hidden space large enough to conceal a crouching man may contain Cato.


Cato has been commissioned by Clouseau himself to stalk and attack the inspector without warning, and when he least expects it as a form of training. Just as addled as his adversary, Cato lies in wait. But where? Surely not the refrigera...

As the dooor cracks open Cato erupts from inside in a shower of frost and fury! He rains blows on the hapless detective with icy hands. Havoc, treachery and mayhem ensue, which both men seem, perversely, to enjoy.

CUT TO...

Pete wanders obliviously through his house. Every doorknob, every corner on a counter top holds the potential for sharp and unexpected pain as his body responds to signals from his brain that cause exaggerated dance-like movements in his limbs. The complex and unconscious calibrations that we all make in the banal act of passing through space are thrown off in the interplay between disease and medication.

But when the meds kick in, it's easy to forget that. Why? Because, darn it, it feels so great to move! Until an arm swings wide and slams into something hard or sharp. Then it feels great to spout profanity with your amplifier up to 11.

It's painful and exasperating to suffer one's own unintended violence. But let's face it, it's also funny. To have Parkinson's Disease is to live a life of improv slapstick. Congratulations, you've landed both leading roles, You're Cato and Clouseau.

Indiana Jones Schmindiana Jones... It's FLASH MOLASSES, episode III

CLICK IMAGE to ENLARGE

FLASH MOLASSES episode one

R.I.P: The Ogre Who Says "No."

Who was the Ogre Who Says "No."? Well, for quite a while, he posed as me. This ogre alter ego crept into my character with patient stealth. The Ogre Who Says "No" set up shop in my head masquerading as the voice of reason. When someone had to play the heavy, the adult voice of delayed gratification, the Ogre was resigned but resolute, and stepped in.

He could be counted on to point out why we should stay home instead of going out, why we didn't need pets, or why we weren't saving enough. The Ogre phrasebook was full of lines like "Sure, but..." and "Do we really..." The Ogre was fluent in several languages because he only had to master one word. Nein, nyet, non, no.

The ogre was no dummy, and often had a point. The truth is that there are always good reasons to say no to just about anything. And that definitely includes saying "no" to the Ogre, who was a pain in the ass to live with. The Ogre had no joie de vivre, and without joie, vivre is thin gruel.

Can I blame Parkinson's for the coming of the Ogre? Probably not entirely. But the Ogre was not me. My Dad even noticed and was disturbed enough to contact my sibs asking if they had noticed that I had lost my "Ebullience." And given that the Ogre keeled over and died around the same time I got up to snuff on my Parkinson's medications, it's hard not to associate the two.

We buried the Ogre in a simple pine box. We never leave flowers. He wouldn't approve. But we do visit his grave now and again to honor him, and to reflect on his last words, carved on the cold granite of his headstone: "Carpe Diem".

"HOWYADOIN"?

I realize this is over the top, but even before my diagnosis, the question "How's it going?" used to plunge me into a swirling metaphysical struggle where the imperative to tell the truth collided with the imperative to be polite. Like most people, I went with politeness.

(We'll have a brief pause here while those of you with smart mouths hoot your disbelief. Are we through now? Good.)

This deference to courtesy came at a stiff personal cost. I had to bite back choice lines like "Oh, the usual quiet desperation, you?" Or another favorite, "Filled with fear and loathing." And let's not forget the cheery, optimistic "Clinging to sanity in a world gone mad."

The discovery that I have PD simultaneously validated those unspoken replies, and rendered them obsolete. A whole new army of unvarnished truths have to be beaten back. A few of my current favorites "Suffering an irreversible slow-motion brain injury, what's up with you?" Or, "Working hard, hardly working." Then there is the clinical "Oh, a little dystonic, bradykinetic, and depressed." Or when the meds are working "Adequately medicated, thanks!" Which lead me to what I have settled on as a reply that seems to satisfy both truth and courtesy: "Adequate, thanks."

For some reason, this usually elicits a laugh, but I have decided it's probably best not to ask why.

I know I am not alone in this. Anyone who has come up with an answer that solves this small but persistent problem in a tidy and honest stroke of inspiration is invited to post a reply.

Adequately,

Pete