Upcoming Teleconference "Your PD Medications"

Hey Folks,

The next in the monthly series of interactive video conferences on Parkinson's Disease will be held at Providence Hospital in room 2390 (in the new wing.) The date is April 20th, the time 1:00Dr. Steve Setter will present a talk called "Your PD medications." You will be able to ask questions of Dr. Setter via two-way video link, so if there is something you need to know on this topic, take note. Here is a number for more information 1-877-980-7500.

Onward,

Peter

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.)

Flash Molasses episode 8: CAUTION, meds at work

Click on image to enlarge

Saturday March 21 Meeting

The Anchorage Parkinson's Disease Support Group will meet Saturday, March 21 at 1:00 p.m. at the Anchorage Senior Center. Lory Jimenez-Betts will share experiences and knowledge she gained while attending the Parkinson's Action Network Conference in Washington, D.C.

Exiled from my comfort zone

Here is my University of Alaska Anchorage talk, with links galore. I am posting it here underscore the point that life continues even after a diagnosis of Parkinson's Disease. My aim here is to make the case and that growth is not only possible, it may come as a beneficial side effect of trying just to maintain your place.

How one cartoonist was forced into picking
the locks that restrain creativity

Speaking in an academic setting is a little outside my normal turf, but I’ll try to talk in long sentences and use big complicated words so you can understand me.

Last time I remember speaking here, I had the pleasure of introducing Mike Carey at a dinner celebrating the honorary doctorate he was awarded several years ago.

That event was a personal triumph for me as well, as I was able to work of the great underground cartoonist R. Crumb into my remarks, which I’ll bet was a first for a U. A. A. academic ceremony.

Not long after I was diagnosed in early 2002 with Parkinson's Disease, an old friend paid me a visit. A person of warmth and intelligence he predicted a fruitful, if difficult time, a prediction based on experience with others who had faced severe illness. I appreciated the comfort offered, but deep down, and for that matter, from right below the surface, I filed this under "Yeah, right."

Seven years down the road my friend is looking clairvoyant. Since that diagnosis, I have been surfing my strongest creative roll, period.

If his prediction were more detailed it would have included these shocking developments...

The end of my indifference to computers as graphics tools and the shameless embrace of Photoshop, iMovie, Audacity, and Flash animation;

Production of numerous animations for the ADN Web site (as well as a series of personal projects) for which I wrote scripts, and music, did the drawing, and where I had to, supplied the voice and did the foley work;

The launch and maintenance one of the first interactive political cartoon caption contests anywhere, Name That'Toon;

The creation of both an ongoing blog on Parkinsons Disease (Off and On, The Alaska Parkinson's Rag,) and Frozen Grin; and...

Extensive Collaboration with Dr. David Heydrick, a neurologist with Parkinson's Disease on materials for his Web site and a DVD designed to help patients deal effectively with their disease.

All this while remembering to take my pills.

Such a description of my future would have seemed way too implausible for the "Yeah, right" file. It would have gone under under “No way” or possibly “Can I have some of what you’ve been smoking?” But it all happened.

I had no road map for the journey. I just booted up the computer and lit out for the country.

But first, I had to slam into a wall. For a creative person that's as good a start as any. As Rollo May observed, creativity is actually driven by limits. If you have no problems, you need no solutions. Luckily for me, I had problems aplenty.

Discomfort in a literal sense began to hedge me in. Repetitive strain problems that I have no doubt were Parkinson's driven arrived at the point where my resourceful and bright ergonomics doctor ran out of ideas that would keep me drawing.

This was a double blow, first because drawing has been a large part of my self identity since I was a second-grader. And second, it has always been my living. I wasn't ready to give it up to Parkinson's Disease.

I knew that there were electronic drawing pads that would enable me to approximate the correct posture of a typist while I was drawing. Using the pad, I can keep my elbows in a natural comfortable angle while holding my head level to look a computer screen, where drawings unfold in a way that is magical.

When I pitched this idea to my doctor, a look of relief crossed his face. He smiled, and replied that it would work. And so far, it does. And it did far more. It was almost like a time machine that transported me from the 19th Century into the 21st. Although it took me a while to realize that I should make the trip.

At the News I was producing cartoons in the same way that Thomas Nast did back in the days of the Civil War. Pen and ink. The lyric vitality of a spontaneously drawn line and its power to describe and suggest was what attracted me to drawing in the first place. I set about recreating that look with the electronic pad and stylus.

Drawing while watching the screen instead of your hands is no big trick. Art students are taught to draw while looking elsewhere. Mastering the program that allows you to draw on the screen (I use Photoshop) was a different story. But that is where I really got lucky. My wife is not only a Photoshop ace, she is also a patient teacher.

Whenever I got stuck, bewildered, frustrated or exhausted, Pam would sort things out.
Eventually I arrived at my goal of being able to produce work on the computer that was
indistinguishable from my pre-computer cartoons.

If you look closely at one of my old cartoons you will see that the gray tones are made up of fine lines. This is a technique that is called “hatching”. It is popular among newspaper cartoonists because the presses we have reproduce it well.
That was the look I worked to recapture on the computer. After much floundering, I finally nailed it.

When I arrived at that lofty peak, that desperately sought grail, that ultimate moment...(By the way, if some of you would start humming the theme from “Chariots of Fire here it will add greatly to the impact.)... that ultimate moment dearly bought with toil and frustration, that apex of mastery when I finally was able to reproduce the old style, I was rewarded with a moment of clarity.

I realized that recreating my old look was a stupid idea.

Take a two thousand dollar machine, equip it with some of the most sophisticated software available, and turn it into a fifty cent pen. Brilliant, wouldn't you agree? That's when I decided it was time I left the 19th Century.

Since then I have been on a full-scale creative bender, exploiting the color, texture and effects at the computer makes possible. I began exploring and picking up steam, incorporating graded tones, trying to work them in with my old style.

Progressing to a full marriage of old and new

Where to go from there? With my cartoons now appearing on the Web, it was on to color.

Meanwhile I was kicking around the idea of animations. The Mac comes loaded with a
movie program (iMovie, old version) that I realized I could turn into a primitive animation application, essentially by speeding up slide shows.

This led to a grandiose plan to webcast a weekly political satire program, only parts of which got off the ground.

Eventually the limitations of iMovie as an animation program pushed me to learning Flash. Flash can be daunting. It's like one of those amazing pipe organs with multiple sets of pipes, keyboards and pedals. The buzz among my fellow Civil War-era cartoonists was about how complex and difficult to master it is. When I sat down with the first tutorial in which the object is to make a simple ball shape roll across the screen the ball just squatted immobile, passive aggressive to the max.

But by now I had a grounding that made the prospect of tangling with flash less daunting. First, my experience with Photoshop convinced me I could learn this stuff. And by the way if I can, you can. Second I was building a critical mass of familiarity with approaches and techniques that seem to recur in these programs, stuff like time lines and layers begins to look familiar, and in the case of flash and Photoshop, both are made by the same company and share many common features. Third, and most important, what those cartoonists who had taken on flash already didn't mention was...( and if you're taking notes, write this down in all caps and highlight it with your boldest color...)

it is a blast.

Flash puts more potential and control over more facets of your creativity than anything I can think of. You can make up your own stories, import your own music, draw your own
images and bundle them all together.

And they come alive! (maniacal, sinister laughter here)

After some practice and some time studying a few books, I learned enough of my little
corner of that massive organ to play tunes I couldn't even have imagined without this
instrument.

I believe that one of the important jobs of a news organization is fostering a sense of
place. And when appropriate, celebrating it. Especially when that place is as vivid
and unique as Alaska.

This was what led me to this next piece for the paper’s Web site. It’s called “Susitna Story” The script is reincarnated from a We Alaskans project, think Charlie Daniels meets Robert Service in the Mat-Su area.

What liberated this eruption of creativity? I believe it was a combination of things. A feeling of exhilaration as my medications finally restored my old abilities, which the disease had been subtly and significantly stifling over a period of years. Along with that came a sense of urgency driven by my own circumstances and the crisis that was rapidly overtaking the media world. I was also intoxicated with the amazing potential that was now opened by the suite of programs that I had begun to use.

And did I mention fun?

Finally, there was the support of editors and the tradition of experimentation at the Daily News that goes back at least to the early 70’s when Publishers Kay and Larry Fanning set the swashbuckling tone that I found when I arrived at the paper in 1982.

Unfortunately, the reality of my progressing disease and the regressing newspaper
industry forced me to bail out.

But not to stop. On leaving the Daily News, I started my blog “Frozen Grin” where this
next piece appeared.

So what is the moral of this story? I was forced by circumstance out of my comfort zone. But I'll trade a certain of comfort for passion and excitement. Giving up the 19th Century to embrace the potential of the 21st made it possible to redefine myself from cartoonist to cartoonist/writer/musician/animator at a time when Parkinson’s Disease has been trying to define me as "disabled".

Imagine what it can do for you.

Pete to speak on how PD opened the way for a binge of creativity

I'll be giving a talk at UAA, partly based on a post from this very blog. Below is the announcement as it appears on my humor blog, Frozen Grin.


The reclusive cartoonist Peter Dunlap-Shohl, who goes only by his first and last name, will emerge blinking into the light for a rare public appearance during which he will reveal the secrets of his creative mojo.

His hordes of wild, debauched, and frankly, non-existent followers, the so-called ""Petefreaks"" are not expected to attend. And as usual he will not conclude his act by singing "God Save the Queen" and then biting the head off a live oyster, as oysters do not have heads, and furthermore Peter does not eat them anyway.

Surprise guests will include former Governor Frank Murkowski, and present Governor Sarah Palin, neither of whom has plans to attend but will be there nevertheless in digital incarnations. Surprise guys!

This will be a tough show to get tickets for, even if you are early, because it's a brown bag, and since when do brown bags have tickets?

That's 1:00 the 18th at UAA's Beatrice McDonald Hall room 211.

More hype can be found here.

And remember, there is ample parking. In midtown.

New Study: Parkinson's unfair to redheads

I'm now officially incensed, put out, torqued off, and furthermore irate. Yes, Parkinson's Disease has finally gone too far. Sure it can ruin your health, your finances, even your handwriting. But many a disease can do the same.

Parkinson's Disease appears to be persecuting a blameless, and frankly, lovable minority. Heads up carrot tops, according to this item posted over at Viartis, (Thanks to Katya for steering me there) we redheads are more prone to PD than those with black, brown, or blond locks

Here's the essence:

"Over 100,000 people were assessed according to the natural colour of their hair when they were young adults. People with black hair were found to be least prone to Parkinson's Disease. People with brown hair were 40% more likely to develop Parkinson's Disease. People with blonde hair were found to be around 60% more likely to develop Parkinson's Disease. Worst at risk were people with red hair, for whom the risk of Parkinson's Disease is nearly doubled."

This freakin' disease is profiling us! My fellow flame pates, it's time to unleash our legendary tempers against this vile condition! We will not be dissed by a disorder. Our time is now! Our path is clear! Redheads of the world, unite, we have nothing to lose but our brains!

Cracking My Squash*, the DBS caper

I have a date with Deep Brain Stimulation at the end of June in San Francisco. Like a bank heist or Louvre robbery, the DBS operation requires a courageous, highly skilled, and disciplined group of specialized experts. Their mission is to to overcome the defenses of their target with just the right calibration of force and guile.

The difference here is that instead of a bank vault, they are going to bore a hole in my skull, breach the blood/brain barrier and drive a hair-thin electrical wire into a wild and remote part of my head. For some reason, running an electrical charge into just the right part of the deep brain has been found to be tremendously effective for some people in alleviating many symptoms of Parkinson's Disease. My status as PD patient makes me both part of the team, and the obstacle to be overcome.

In the traditional heist movie there is always a scene in which the mastermind assembles his handpicked experts for the briefing on the bold and ingenious blueprint for the task. Here's how my part in the drama goes:

"Listen up, here's the plan. Pete, your job is simple but critical. Just lie still for around four hours. To help you do this, a couple of minions will secure a surprisingly comfy stainless steel "halo" to your skull. Then a highly trained team member will guide the wire into the target zone deep within your brai..."

(Deep thud as I faint to the floor)

"Dammit Hugo, slap him back to consciousness, there's a good lad."

(Crowd in theater cheers as Hugo slaps me awake)

After they revive me they remind me that I need to be awake during the operation so they can assess the accuracy of the placement of the wire. For instance, if my surgeon asks me to wiggle my hand and instead I deliver a swift kick to Hugo, they know that there is some fine tuning to do.

The 14 authors of the script provide me with scrappy, snappy lines to deliver from my helpless immobilized position. Stuff like "Hey, who left my skull open? I'm getting a draft on my Subthalamic Nucleus". The authors prove I am unfazed that SOMEONE IS GUIDING A WIRE INTO MY BRAIN by having me whistle "Fixing a Hole" by the Beatles until my surgeon, a bead of sweat trickling into his eye, finally snaps and calls for a #7 surgical clamp which, with his sensitive surgeon's hands, he compassionately applies to my upper and lower lips.

(Theater crowd erupts again in a frenzy of applause)

Actually, I'm not unduly anxious about rattling these people. Consider: A day at work for them often involves a look at a naked, living brain, its gray, wrinkly coating glistening in the bright light of the operating room. These are tough customers one and all. It will be a big job to mess with their minds while they are messing with mine.

At the end of the scene in which the so-crazy-it-just-might-work plan is explained, the mastermind always asks for questions. Naturally, I have one. "In the case of hiccups, can the entire apparatus be inverted so I can cure them by drinking a glass of water upside down? And, if yes, is there any danger of my brain slipping out of the new holes and smacking to the floor with a gooey splattering sound?"

"No." The mastermind replies, and then orders Hugo to slap me back to unconsciousness.

(Theater goes nuts)

(Producers, sensing audience approval decide to end here. Fade to black, roll credits, as Vampire Weekend plays a brand-new-special-for-this-credit-sequence version of "Fixing a Hole".

*To "Crack a squash" was slang my father would use when he assisted at operations that involved cutting through someone's skull.

Our February 21 Meeting: Plan A and plan B UPDATED!

Breaking news from Caregiver extraordinaire Betty Berry. Betty will be available this meeting for a separate session for caregivers. These mini-meetings are highly recommended for partners of people with Parkinson's Disease. A great chance to pick the brain of someone who saw her husband through the entire course of his disease and can offer seasoned advice and comfort to those of you who face this difficult passage. If that isn't reason enough, I might also mention that Betty has been known to bring homemade cookies as well..

What else is up for our February 21 meeting? Glad you asked. We are working on setting up a visit from new neurologist on the Block Dr. Frank Ellenson. Dr. Ellenson is ramping up an ambitious practice at Providence, which will include regular visits from motion disorder specialist Dr. Alec Glass. This will be an excellent chance to hear about how this will work, and what it means for those of us who either cannot or do not want to travel thousands of miles for care from a doctor with extensive Parkinson's Disease training.

If this falls through, we go to plan"B", which is to watch the comedy classic "All of Me" imagining it it as a metaphorical look at PD and how to live with it. There are uncanny similarities between the predicament of the hero and things we face as we struggle to control our own bodies. Not to mention that it's hilarious, and I don't know anyone out there who doesn't need a good augh. As I've said before, Parkinson's takes too much from us as it is, I'm not giving up my sense of humor!

Sleep and Parkinson's Disease: Patient Education Event coming to Anchorage

Hey everybody, what's your favorite topic? If you said "Parkinson's Disease, of course" then snap to attention. Those of you who said "Sleep" should snap to attention as well. If you actually were asleep, sorry I woke you, but now that you're up you may as well mark the event below on your calendar.

This is another seminar sponsored by our friends at the APDA. Our thanks to them! Oh, and I just remembered, the most recent edition of The Fairly Exciting Adventures of Flash Molasses involves this very topic. You can find the post by clicking here.


Dear Friends of the APDA

Please be our guest on Thursday, March 26th, 2009 at Alaska Regional Hosptial for an Educational Patient Program with

DR ALIDA GRIFFITH
MOVEMENT DISORDER SPECIALIST
BOOTH GARDNER PARKINSON DISEASE CENTER, KIRKLAND WA

"SLEEP ISSUES PERTAINING TO PARKINSON'S DISEASE"

11 am - 1.30 pm

Lunch will be provided and there is no charge for this event

Reservations requried
Please RSVP to;
evedavis@gmail.com or 425-443-8269
Sincerely,

Evie
Evelynne Davis