Local Man Finally Dies of Parkinson's Complications

Note: At a recent APDA-sponsored Parkinson's Disease seminar a speaker suggested that one way of coping with bad news is to realize that there are people who have it worse than you. Fair enough, but somewhere in this weary world there must be the ultimate loser, that last guy whom everyone else is fortunate not to be. As a public service, Off & On has dug up this hapless schlemiel, one Herb Sleeper of Fargo, North Dakota. The following is his obituary as it appeared in the Fargo FreePressArgusChronical Weekly Shopper.

Relatives of Herbert (Herb, Bert) Sleeper are pleased to announce the passing of their late father/husband/brother/cousin/uncle. Members of the family were universal in their sense that "A great weight has been lifted from our shoulders" as his brother Harold (Heavy) Sleeper was eager to tell this reporter. "For starters, he lived in Fargo" his brother continued "If you could call that living". Harold fondly recalled how when they were young they would roam the wide plains at will, getting bitten by ticks, stung by bees and assaulted by motorcycle gangs. "All God's creation seemed to be against us in those days" he said, his eyebrows dancing as he recalled how his brother had been struck 12 times by lightning."Not uncommon for those of us living in 'The lightning strike state' but a bit unusual for just one day" he said with a pimpish grin.

"Maybe it was the lightning that caused his Parkinson's" his wife Shelly said, "Or maybe it was the pesticides that he routinely drank after hearing a friend complain of a stomach bug. Whatever. Of Herb it can be truly said that he took his early-onset diagnosis lying down" She remembered with clear distaste how Herb would complain about his symptoms in a voice that grew softer and softer by the month. He wanted speech therapy", she laughed as she recalled, "But we were all against it".

Still she was unable to disguise a note of admiration as she looked back at Herb's fierce struggle to not do anything about his deteriorating condition. "He'd blow off taking his pills, missed Doctor appointments, and hey, forget exercise!" she smiled. "He said he'd die before he joined a support group which come to think of it, I guess he did. His one accomplished goal in life. His only goal now that I think of it. Pitiful".

Herb will be remembered as a great indoorsman, who liked nothing better than rising early to hunt for his remote. "He and that damn remote were inseparable" recalled his wife. "It was agony waiting for him to change channels what with his tremors and slowness. We used to watch infomercials for hours as he attempted to aim the thing at the TV. When there were no good infomercials on, he would lie endlessly on the couch moaning inarticulately to himself and any unfortunate soul who happened near. No matter how bad things got, Herb was willing to share the misery. He's better off now that he's dead. Hell we all are." No services will be held . In lieu of flowers the family asks that you simply send them money, unlike Herb, therapy ain't cheap.

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.

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

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Encounter with the supreme identity thief

Remember the "Me Decade"? That's what writer Tom Wolfe christened the 1970's . It was fashionable at that time to attempt to "find yourself". This was a common pursuit of the day, and a weird one. It conjures the idea of some tragic mix-up in the maternity ward in which your true self went home with the wrong family and then moved across the country without leaving a forwarding address.

Eventually it would fall to the strong and the brave to go out and track their fugitive self down, like an escaped con. As with any great quest, this one was fraught with difficulties. It's a given that your real self would be found somewhere more exciting and exotic than wherever you were at the time, but where? And how would you know when you found your true self? What if you found somebody else's true self and mistook it for your own? You might live the rest of your life as someone else, and never know. Which for some might not be a bad idea.

Most people gave up or got over it by the mid eighties. And it was never much of a problem for me. I always defined myself as an Alaskan, and a cartoonist, and later expanded into husband and father. For the most part, what I did was who I was.

Then came Parkinson's Disease, the identity thief supreme. I was a guitar player who didn't play the guitar, a cartoonist who was struggling to draw, a father who was too tired to cook or to even stay up and share a movie, a husband who was cranky and listless. (See my pal, the ogre here)

"Finding yourself" seems like a foolish game. Losing yourself is terrifying.

Eventually diagnosis and medication restored much of my original drive and personality. But Parkinson's is a moving target, and medication only approximates what my friend Dr. David Heydrick calls "The exquisite precision" of the dopamine controls of the human brain. And as we know too well, the medication eventually becomes as problematic as the disease.

But, for now, the person I think of as the real me, does glint out occasionally and briefly, from between the manic, nattering chatterbox I am at the crest of my dose and the semi-paralyzed zombie I become at the ebb. Like a canny performer, he always disappears before wearing out his welcome, leaving Chatterbox and Zombie Man in a state of anticipation about the next appearance .

The question isn't "Who am I?" or "Where am I?" It's "When am I?"

"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

Motion Denied!

Denial. That's a word that sums this freaking disease up. Speak? Denied. Nod? Denied. Smile? Walk? Run? Denied.

Michael Kinsley, PPWP(Pundit Person with Parkinson's) wrote a column for Time in 2001 explaining his choice then of denial as a strategy. Here is a sample:

"When I got the diagnosis eight years ago, I chose denial. If ever you're entitled to be selfish, I thought (and still think), this is it. So I see a good doctor, take my pills most of the time and go about my business. I couldn't tell you some of the most basic things about Parkinson's and how it works... If you fool yourself skillfully enough, you can banish thoughts of the disease but retain a liberating sense of urgency. It's like having a Get Out of Jail Free card from the prison of delayed gratification." Look here for his entire article.

The argument is creative, humane, beguiling, and wrong. Outdated may be a kinder way to put it. Consider this: It is now clear that there is a long latency period, likely over a decade, during which quiet damage occurs. Researchers believe that somewhere between 50-80 per cent of dopamine generating cells in the substantia nigra are kaput before symptoms emerge. So you've already had your denial period before you even realize there is a problem.

So go straight to panic, anger, and suffering.

Kidding! Kidding! Here is the good news. There is growing evidence that we can influence the course of the disease by means within our power. Exercise has some serious anti-PD mojo, Reducing stress and following the Mediterranean diet are looking promising. Denial will delay serious efforts on your part to act in ways that can raise and extend your quality of life.

Denial (and fear) can also make you slow to join a support group. This is a mistake. People at your local support group are PD experts in ways that the best doctor just doesn't have the experience to understand. And there is nothing they would rather do than share what they know with you,

Get over denial. You owe it to yourself and those that care about you. If you can buy some quality time by paying attention and taking care of your body, it's time earned. It may be uninspiring, but nobody lies on their deathbed thinking "If only I'd eaten less broccoli and not done so much exercise."