Roll Call, A Parkinson's Poem

April was Parkinson’s Awareness month. It was also Poetry Month. Put them together, and you’ve got Parkinson’s Awareness Poetry Month. That calls for a PD poem. A poem that is full of false rhymes and staggering meter, the better to give it that old Parkinson’s feeling. Fortunately, I happen to have such a poem right here. (Note: I assume all of you out there suffering from this disease are sufficiently aware of it, so this poem is written to those who are still seemingly healthy.)

Post riginally written for The Northwest Parkinson's Foundation Community Blog.

Parkinson’s Roll Call

Hitler, Franco, Mao Tse Dung
all had, in common, Parkinson’s
Alan Alda, Muhammad Ali,
even George H. W. Bush had it (vascularly)
Ozzie Osbourne, of Black Sabbath,
and… Billy Graham? Go do THAT math!
Jesse Jackson, just so you knew,
and don’t forget Pope John Paul 2.
Vincent Price, most melancholy,
Surrealist artist, Salvador Dali,
Casey Kassem. Pierre Trudeau,
Charlie Rose, Janet Reno,
George Wallace and George Roy Hill
all had to swallow that bitter pill.
Johnny Cash and Robin Williams
both suffered forms of Parkinsonism
James Doohan, Star Trek’s engineer
And Nathan Heard, or so we hear.
Linda Ronstadt was not spared,
nor was the actor Deborah Kerr.
Nor Richard Thompson, of cartooning fame,
Nor German actor Ferdy Mayne
Nor Conductor of opera James Levine,
Nor Eugene McCarthy, that’s right,“Clean Gene”
Nor Walter Sisulu, freedom fighter-
Nor Jack Anderson, muckraking writer
Nor Author and artist Mervyn Peake,
Nor Glenn Tipton, of rock band Judas Priest
Nor Davis Phinney cyclist of renown,
Nor Billy Connolly, a Scottish clown,
Nor Maurice White, of Earth,Wind and Fire
Nor Roger Bannister, sub four-minute miler,
Neil Diamond’s got it, so they say,
Spiders & Snakes singer Lizzie Grey,
Martha Johnson, who sang with the Muffins,
actor Bob Hoskins, a lovable ruffian
Margaret Bourke-White, photographer sublime,
Actor and model Valerie Perrine,
Steve Ludzik of the NHL,
Brent Peterson, a hockey star as well,
Boxing hero Freddie Roach,
Billy Kennedy Texas A&M basketball coach.
Massa Salto pro wrestler from Japan,
Paul Sinha, British comedian
And who can forget Fox, Michael J?
The list goes on, but that's enough for today.

The rich and the poor, the steadfast and the flighty,
Priests and beasts, the weak and the mighty,
Losers and winners, it’s brutal but true
If they all can get Parkinson’s, Parkinson’s can get you

 

~Peter Dunlap-Shohl.

A Health Care Jeremiad (Second in a series)

Our health care system, particularly the way we fund research, reminds me of the old Tom Lehrer line about his doctor friend who specialized in "diseases of the rich". And if that joke is funny about just one doctor, think about how the hilarity compounds when it applies to an entire system.

Research, care, and resources directed at a particular disease are driven by concern. Concern is driven by awareness. Awareness is driven by the amount of energy and volume those affected by the problem can muster. Anybody see how the deck is stacked against Parkinson's sufferers here?

But just to make things more interesting, there is the effect of the celebrity wild card. If somebody famous and widely liked, an actor, an athlete, gets the disease... BING! BING! BING!... suddenly they're testifying before committees and Congress finds a way to wrap money for the problem into the next passing bill. Even better, a member of Congress should get sick. Then their peers can really relate, and they'll cry while they pass it. So you're set. For a year. Repeat until cured.

This is weird enough at the policy level but it gets downright warped at the level of the individual. This is the level where I'm shocked by decent caring people who say things like "It's lucky that Michael J Fox got PD. Now we get attention and funding." But why should that be shocking when I've privately thought the same thing?

Ignoble, Selfish. Obviously wrong on so many levels. And only human.

So must we add shame as another effect of Parkinson's Disease? Here's a way out. We should rephrase the thought to accurately express what we really mean. People renowned and obscure get Parkinson's all the time. None of us is happy about that. But not all of them react the same way. Some retreat, and lie low. Who can blame them? Others, like Fox, or Muhammad Ali, or thousands of lesser-known but equally courageous people with ravaging conditions go forth to meet their adversary with all the intelligence and energy they can muster. It's not lucky for the rest of us that they got our disease. It's lucky they are doing something about it.

And, not today, not tomorrow, but surely over time, their effort and courage will bear fruit. And that is something we should feel grateful for. That is something we may celebrate.

A Health Care Jeremiad (Part one)

"April is the cruelest month"
-T.S. Eliot

April is Parkinson's Disease Awareness Month. It is also Sexual Assault Awareness Month, Mathematics Awareness Month, Workplace Conflict Awareness Month, Irritable Bowel Syndrome Awareness Month, National Cancer Control Awareness Month, National Autism Awareness Month, STD Awareness Month, National Child Abuse Prevention Month, Tsunami Awareness Month, Counseling Awareness Month, Earthquake Awareness Month, and the list goes on. And what a list! As you look it over you will not be surprised to learn April is also Stress Awareness Month. To which I'd drink, except that it's also Alcohol Awareness Month.

Show of hands: How many of you out there actually knew that April was the month that you were supposed to be aware of

1. All of the above?

2. Three or more of the above?

3. Any one of the above?

As a guy who had to Google the phrase "April awareness month" to come up with everything but Parkinson's on this list, my hunch is most hands went up on 3. This suggests that dedicating a month to make people aware of something they do not particularly want to think about in the first place is not a winning strategy.

So how does a supplicant make their cause stand out from the throng? Whether it's a hearing room in Washington D.C. or a Board Room in San Jose, what you need is volume, and a champion with star power. Which is why so many of us appreciate Muhammad Ali and Michael J.Fox. Both have used charisma and strength of character to attract sympathy and money to the cause of ending Parkinson's Disease.

This is great for those of us who suffer from PD. I hope to benefit from it someday. But as health policy, it is pathetic. Rather than taking a systematic set of criteria that would rank research priority by, say, rate of disease in the general population, or rate of fatality, or cost to treat, we have a popularity contest. Jackpot if you share your malady with someone appealing on a scale grand enough to sway research dollars in the direction of your problem.

If this doesn't seem unfair to you, consider the inverse. What if you shared a health problem, maybe addiction to prescription pain pills, with someone despicable, say, a loudmouth thug from talk radio? And then suppose the powers that be decided to subtract from the budget for addiction research because of the antimagnetic personality of the high-profile pillhead? Why should a perfectly lovely person like you suffer because of your unwilling and random association with this jerk? And, to return to the original question, isn't it just as arbitrary to benefit from association with a worthy person like Ali?

Because of the nature of the disease, the Parkinson's field has struggled under this system in the past. Parkinson's research suffered for years precisely because the disease tends to turn its victims into quiet people who avoid the spotlight. People who avoid going out in public. Who are embarrassed by tremor. Who are tired of being accused of being drunk because of their poor balance and slurred speech. Lobbying under these conditions is a formidable and forbidding task

Scene: A brightly lit hearing room where a person with Parkinson's, their symptoms aggravated by stress, attempts to make their case. "Can those of you in back hear me? No? Those in front? I'll try to slur directly into the microphone" It's hard to be the squeaky wheel when you can't even audibly squeak.

There are a dizzying array of interacting factors in the complex set of questions about allocation of research priorities. It is hellishly difficult to know how best to foster the greatest good in choosing among worthy areas. It may be so complicated that it's impossible to avoid a decision that is not arbitrary at some level. So maybe this is the best we can do. But have we even asked ourselves that question?

Trying to choose between diseases is partly a self-imposed predicament. We could skirt these choices by deciding as a society to devote more to health research in general. There is much we could do that would make us all proud of if we made the pie bigger.

Oh. I forgot. We gave all the pie to the wizards of banking who crashed our economy by operating heavy financial equipment while intoxicated with greed. Don't these people read the warning labels?

I guess it will come back to haunt them when they get their Parkinson's or cancer diagnosis.

At which point they will join us in the system. I sure hope we've gotten it reformed by then. Because with research funding to some degree a popularity contest, they'll bring in enough unpopularity to set all of us back decades.

(Part one of a series.)

Pete's PWP Portraits No.3: Muhammad Ali

An interesting project for me. While working on this drawing I noticed that his left eye seemed to say "I regard you with interest and professional detachment." His right eye seemed to say "I want to hit you so hard, your descendants will bear bruises for three generations."