The best advice you'll ever ignore

If you could ask a smart, well-trained Parkinson's Disease specialist one question, What would it be? I was in a position to do that recently thanks to my friend Dr. Mary DeMers, who arranged for Pam and me to attend a talk from Dr. Stewart Isaacson, Director of a movement disorders clinic in Boca Raton. Dr. Isaacson was in town to educate the local medical community about developments in Parkinson's care.

As the designated Parkie, I wondered how to get the most bang for my question buck. I wanted something simple and powerful that I could take back to my support group. So I asked something along the lines of: "What is the one thing that your patients could do to cope better with PD that they don't do?"

Without hesitation, the doctor shot back an answer. I expected a reply that might have something to do with managing our pills, or informing ourselves about our disease. Nope. His reply was one word.

What he said was...

(Are you ready?)

What he said was....

(Got a pencil? you may want to write this down!)

What he said was...

(and I quote)

What he said was...

(WARNING: You're not going to like this.)

What he said was....

(OK, here it is.)

What he said was: "Exercise."

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?"

Meeting the 17th

Hey everybody, this week's meeting snuck up on me, but, yes, we will meet at the Senior Center this Saturday, the 17th of May at 1:00 p.m. Program undetermined at this moment, but give me a little time and I'll gin something up.

See you then,

Pete

FLASH MOLASSES episode two

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Would you like a shot of adrenalin with that?

When I was a teen, I thought my Dad was an idiot to bicycle to work. For one thing BIKE is to ANCHORAGE DRIVER exactly what RED CAPE is to BULL. Ask my son. More to the point Dad owned a sleek emerald Datsun 240 z sports car that not only looked fast standing still, but also could fit my sister, her 'cello, my sister's friend Leslie, and Leslie's viola, with room left over for Dad to drive.

Dad would forsake all this for the hard seat of his 12-speed, pedaling off to the hospital at all hours in the long subarctic twilight of summer.

Sadly his idiocy seems to have been passed down to me, in an even more virulent form. As I ride to work in the morning, the soundtrack is the rhythmic rattle of my medication. So in addition to cyclist=red cape, we have a sporadically spastic moron with compromised balance aboard a two wheeled contraption that shouldn't even work for a healthy person.

My neurologist has told me twice that the physics of cycling are not understood, and in fact, that it shouldn't be possible. That's incentive enough for me right there. For some reason, I experience a better sense of balance aboard my bike than afoot. I am more likely to lose my balance putting on my socks than pedaling my way to work. I feel trapped in a car this time of year. On a bike, I'm free.

There are times though, when I think twice about the wisdom of this habit. Let's replay the phone call I made to my wife shortly after leaving the house yesterday.

Pam: (groggily) Hello?

Peter: Hi, I'm at turn-off for the Science center, There's a BIG (Expletive deleted) BLACK BEAR down the road bank and across the pond.

Pam: (Alert) Should I come get you?

Peter: No, I'm leaving RIGHT NOW.


There were plenty of cars and people around, I wasn't that worried. The real moment of terror for the day was about twenty five minutes later, two blocks from work. An enraged Yorkshire Terrier/wolverine cross chased me at top speed (for both of us) a good 500 feet. Less dangerous than a black bear, you say? Maybe, But much more inclined to bite!

Coming Event: Dr. Susie Ro to give patient seminar

Hey Folks mark your calendars for THURSDAY JUNE 19th, when Dr. Susie Ro will present an educational program on non-motor symptoms of Parkinson's Disease. Dr. Ro practices at Swedish Hospital in Seattle. To make reservations, email evedavis@gmail.com, or call 425-443-8269

Registration begins at 11:00 a.m., Lunch will be provided.


This event made possible by The American Parkinson's Disease Association and Teva Neuroscience

Handy Doctor's Guide of Stupid Things to Avoid Saying

Don't get me wrong, I trust and like my doctor. Otherwise I would find somebody else. But there is an appalling number of stupid and cruel remarks related to me over the past few years that fellow patients have heard from their doctors. These patients and their loved ones are often bitter about these thoughtless wounds, and as you read some of the remarks below, you will understand. (Note, these are paraphrased from the original sources.)

The reassuring physician, answering a patient's question about whether he would adjust to a new medication: 'You will be dead before your body gets used to it.'


The reassuring physician II: 'You have Parkinson's, but at your age something else will pick you off before it becomes a major problem.'


The careful observer: 'Come back next month, you are no worse than the last time I saw you.' In actuality the person in question was so much worse he was nearly immobile.


The blithe optimist: 'Let's give this new medication a try, there will be no side effects.' The patient suffered more from the new meds than from his Parkinson's Disease.

The cheery prophet, on being informed about a patient's positive mood and symptomatic improvement following exercise: 'That'll disappear in a few years.'

The gimlet-eyed skeptic: 'That's not a real tremor, you are making your leg do that.'

Others have told me of being given their diagnosis through a burst of laughter, of being given the shove test by several doctors without a word of explanation, and of being locked up by a crew at an emergency room, accused of taking drugs, and told that they were going to remain locked up until they were ready to tell what they had taken.

I am grateful for the hard work of smart, dedicated people who have mastered the techniques and knowledge that keep me functioning at the level that I maintain. I appreciate the difficulty of a general neurologist who must treat everything from migraines to MS. And I can imagine the chronic frustration that must come from being forced to manage the decline of people you wish you could cure. Throw in the many failings of the health care system as we know it here in the U.S. and I can see why both of my parents, one a surgeon and the other an anesthesiologist, discouraged their children from a career in medicine.

I grant all that. But it will take someone smarter than me to understand why people who are enduring what can't be changed should be subjected to additional pain that can be easily avoided.

From the "Still Kicking" file

Much to my surprise, life is still going on six years down the road from my diagnosis. I was caught off guard last month when I learned that the Alaska Press Club had chosen to honor me with its second annual First Amendment Award. Which meant giving a speech.

Various worst-case scenarios flashed in front of my eyes: Freezing, shuffling up to the lectern and whispering. Or speaking loudly and clearly, and saying something brainless. (Opening joke considered and rejected: "Boy, am I glad I had speech therapy!" And yes, I did practice my kegels as much as my speech.)

As it turned out, the scariest thing that happened was that I had to follow the fabulous Leonard Pitts.



Here is what I said.



At a time when so many distinguished Alaskans are quietly thanking their stars for their 5th amendment right to remain silent, it's great to be at an event that celebrates the right to speak out.

The best way for me to tell you how honored I am to receive this award is to say how proud and excited I was last year when you gave the first one to my friend John McKay.

This award recognizes more than the work that I have done. The cartoons that I have created absolutely would not exist without the extraordinary support of a line of editorial page editors who appreciate what both of our jobs are about. They have been my coaches, my teachers, and my friends.

Editorial cartoonists are becoming the rare Ivory-billed Woodpeckers of the journalism world. The fact that the Anchorage Daily News supports a staff cartoonist is unusual to say the least. So this award also recognizes the commitment of the management of the Daily News and McClatchy, from Pat up the line.

And I would be way out of line not to mention my wife Pam, whose foresight, smarts and patience have kept me drawing way past the time Parkinson's would have sidelined me.

There's a story about an irascible old Hearst editor, who, when asked "Is a cartoonist a journalist?" replied "Is a barnacle a ship?" The ship here is a bunch of smart, dedicated and courageous reporters and editors at news organizations across this state doing the job of digging up the news. Or, as I think of it, "my material". Maybe "leech" would be a better term than barnacle. But of course, when it's time to keel-haul somebody, it's good to have a few barnacles on the hull.

The whole idea that someone can make a living making drawings is improbable - and wonderful - enough in itself. But as I look back over a quarter century it seems even more amazing when I remember the depressingly regular bulletins announcing the imminent death of the newspaper business. And we can look back farther to see obituaries for the newspaper being written back when radio and TV were new. And now Radio, TV and print journalists are all together in our boat, sailing toward what often seems like Web Armageddon.

But, silver lining! Armageddon is terrific copy. In fact, many years ago a bunch of reporters were gathered in the Mermac lounge debating the question of "What would be the greatest news story?" They were settling on the grand finale, the final world-ending confrontation between light and darkness, good and evil, Coke and Pepsi,... when it hit then-reporter Howard Weaver that he had a better story he wanted to tell. The story of The Creation.

Dateline: The Void. In the beginning was the word. A journalist has to love that.

Well lucky us! That is right where we are this very moment. We are being showered with new tools and opportunities to tell stories. Those of us in this room will invent the techniques and sort through the values that are the template for those that follow. The advent of the Web made it possible to redefine myself from cartoonist to cartoonist/writer/musician/animator at a time when PD has been tryng to define me as "disabled". Imagine what it can do for you.

Seize those tools, those opportunities. Because we have a job to do.

Today, in addition to the familiar enemies of free speech, we have a new one: The combination of trivialization of the news, compounded by the raw sewage being dumped into the debate that obscures everything from the truth about Global Warming to the truth about John McCain's non-existent bi-racial love child. All of which festers on the Web which happily disseminates lies and truth without discrimination.

This leaves the distracted and harried citizen with a huge problem when it comes time to make the judgments that democracy requires. Many decide it's not worth the trouble.

This was brought home to me most forcefully by a ruling from Judge John Sedwick in a change of venue decision in the Kohring trial. The judge found that there was no need for a change because, quote:

"To put it bluntly, a surprising number of prospective jurors are just not interested in, and do not follow, local news. "Many don't even read local newspapers. Many do not watch the local news on television. Among those who do read the newspaper, many simply glance at the local news headlines while moving on to areas of interest such as sports or gardening."

To which I would add "OUCH!"

The trivialization and pollution of the news leaves the First Amendment vulnerable in a way that is particularly ignoble. With little of actual significance to protect, it will wither. With little of actual significance at stake, what's the point?

It's up to us to make sure that doesn't happen. I can't imagine a better group to entrust this to. Alaska journalists are smart, dedicated and creative. We've got a limitless supply of compelling stories to tell in this state. We've got exciting new ways to tell them.

Our craft is essential, as the founders recognized in amending the Constitution to protect it centuries ago. It's no less important now. We must engage citizens in the job they have to do. If we manage that, we will do work worthy of the protection conferred by the First Amendment.

And that is the best we can do.

--

Upcoming meeting, Aprl 19

Hang on to your hats, folks , We've got a speaker coming in that will leave you spellbound! If you take as many pills as I do, you'll want to be there when John McGilvray, BS, PharmD, CGP, FASCP, BCPS comes to share his knowledge of PD medications. Here is a taste of his background.

CURRENT POSITIONS

• Senior Clinical Pharmacist; Primary Care Clinic Pharmacy, Alaska Native Medical Center (ANMC), Anchorage, AK
• Preceptor for Pharmacy Residents, Drug Information
• Preceptor for PharmD Students, Ambulatory Care

EDUCATION

2007 (Oct.) American Society of Consultant Pharmacists Foundation Parkinson’s Disease Pharmacotherapy Traineeship, Movement Disorder Clinic, Feinberg School of Medicine, Northwestern University, Chicago, IL.
2006-present Board of Pharmaceutical Specialties; Board Certified Pharmacotherapy Specialist
2004-present Commissioned Corps Readiness Force modules complete
2002-present Fellow of the American Society of Consultant Pharmacists
2001-present Certified Geriatric Pharmacist; Commission for Certification in Geriatric Pharmacy
1997-2001 University of Illinois at Chicago, Doctor of Pharmacy Degree with High Honors
1974-1977 Northeastern University, Boston, Massachusetts, Bachelor of Science Degree in Pharmacy and Allied Health
1972-1974 Massachusetts College of Pharmacy, Boston, Massachusetts, undergraduate study

In addition, the fabulous Betty Berry will lead a separate session for caregivers. It's all happening at the Anchorage the Senior Center, 1300 E. 19th Ave. The time: 1:00 in the afternoon on Feb. 19.

See you then!

Pete

FLASH MOLASSES episode one