Telehealth Presentation at Providence: Parkinson's and Penmanship

The fine folks at the NWPF bring us another interactive telehealth seminar. This is a two-way television show (think Dick Tracey's 2-way wrist TV with a really big wrist) where an expert gives a program and then takes questions from people attending electronically from all over the Northwest. Ironically the subject of this particular edition will be that ancient mode of communication, handwriting.

The event will be at Providence Hospital, room 2401 on January 11, at 1:00. For more info, call: 1-877-980-7500

What It's Like to have Parkinson's Disease (Diagnosis: Fourth in a series.)

There's no good way to learn you have Parkinson's. But some ways are worse than others.

What It's Like to have Parkinson's Disease (Undermedicated: Third in a series.)

Another up-to-the-minute glimpse into the lifestyle of tomorrow, living with the disease that's all the demographic rage: PARKINSON'S! Today's fab feature is the joys of being undermedicated.

Another Year Kaput! This Calls For a Celebration!

Hello Friends,

Another year draws to a close, and if you are reading this it means that you survived. Congratulations! This calls for a celebration, It's potluck time! Let's do it up right and rendezvous at the Anchorage Senior Center at one p.m. on Saturday the 19th at the Anchorage Senior Center. I'm a potluck anarchist which means that everybody brings whatever they want. I plan on slow cooking free range buffalo from up in the Mat-Su, so you can factor that into your decision about your dish.

See you there, and I wish all of you the best for the coming year.


Chef Pierre

What It's Like to Have Parkinson's Disease (Part 2)

This is what happens when you miscalculate your dosage. Memo to self: Do not miscalculate dose.

What It's Like to have Parkinson's Disease (first in a series.)

I've been thinking for some time about ways to communicate what it's like to have PD. This is the first of occasional attempts to say it with animation.

PD? Phone Home...

As a naturally paranoid person, I've long suspected that my beloved cell phone is frying my brain. Quite the opposite, says this uncharacteristically cheery post from Viartis. According to the brief story there,

"...long term use of mobile phones actually reduced rather than increased the likelihood of Parkinson's Disease and dementia by 30% to 40%. The researchers offer no reason why this might be."

The explanation? Who knows? The theory is that the effect results from low strength magnetic fields produced by cell phones, similar to those used in experimental treatments now underway. And why, you ask, should magnetic fields have such an effect? I have no clue. Ask a neurophysicist. Preferably via cell call.

What I do know is people with Parkinson's can now add heavy cell phone usage to smoking, drinking coffee, and eating dark chocolate to the list of vices we wish had indulged in more often. Its unjust, it's annoying, it's downright weird. But we can console ourselves with this: At least Hitler didn't have a cell phone.

Pete's Parkinson's Portraits: Adolph Hitler

Is it true we share our affliction with arguably the worst person ever? While nobody searched for or found conclusive proof in an autopsy, there is convincing evidence that the Nazi leader did have Parkinson's. Further, there is interesting speculation that the disease may have cost Germany the war.

In an article from Pub.med, maintained by the National Institutes of Health, the authors write:

"It has been proved that Adolf Hitler suffered from idiopathic Parkinson's disease. No indication for postencephalitic parkinsonism was found in the clinical symptoms or the case history. Professor Max de Crinis established his diagnosis of Parkinson's disease in Hitler early in 1945 and informed the SS leadership, who decided to initiate treatment with a specially prepared 'antiparkinsonian mixture' to be administered by a physician."

As to how the disease affected Hitler, and hence the outcome of the war, the argument is outlined by the BBC as follows:

"The dictator suffered the disease, and the mental inflexibility associated with it could have been what led to his slow response to the D-Day landings in Normandy in 1944, researchers said at the International Congress on Parkinson's Disease in Vancouver.

Dr Tom Hutton, a neurologist who co-authored the study, said Hitler was suffering physical and mental symptoms of the disease, but his aides kept it secret.

He said that by the time of the Normandy landings, Hitler had suffered the disease for 10 years and would have had problems processing conflicting information - hence his initial refusal to allow Panzer divisions to move to the site of the invasion.

Hitler is said to have been convinced that the Allies would launch their attack at Calais."

Again we are forced to confront the ironies of Parkinson's Disease. Consider this, the stricken Fuhrer would not have survived the process of selection in which the weak and sick were culled from the death camps. With his symptoms aggravated by stress he would have advertised his own weakness and perished for it.

And this: For once, the illness does something good, helping to bring down a mass murderer and changing the course of history for the better. Yet one of the more acceptable traits of the disease, its slowness, left him in place long enough to ensure the massacre of millions of innocent Jews, Gypsies, homosexuals and others deemed subhuman or troublesome. Parkinson's Disease crept bit by bit through his system idly allowing Hitler to cause the deaths of millions of soldiers and civilians from all sides, and to leave Europe in ruins. Even when it does right, Parkinson's does it wrong.

The Hope Conference online

Here's a great resource for those of us unable to make it to this event put together by the most excellent Northwest Parkinson's Foundation. If as Emily Dickinson said "Hope is the thing with feathers", then the plumage of the NWPF is especially magnificent. Info below is from an email from the foundation.


Each of the presentations given at the 2009 HOPE Conference are now available online. We offer this service so that you may review or share the information offered at the conference. If you know someone that may also benefit from these presentations, please forward this on to them so that they too may enjoy the information provided.

You can go directly to the presentations by clicking here.

Don't forget to visit the newly offered online Wellness Center. There's many more tools and strategies to help improve one's self-care and quality of life. You can explore this new addition to our website by clicking here.

As always, if you have any questions at all concerning the conference, resources available to you, or ways we might help improve your quality of life, please don't hesitate to email us at info@nwpf.org or phone at 1-877-980-7500.

Is this Thing on ? Test... Test...

Above, a rare photograph of The Ogre Who Says No caught in reflection on the back of the resophonic mandolin


Well the new brain hardware is getting road-tested this weekend when our band, Whiskey Jacks heads for Homer to play Alice's Champagne Palace. In an earlier post, I explained why it was difficult to tell if the device was actually working as I stumbled toward the right mix of stimulation to medication. Now it's a different story. The effect of the electric stimulation seems to have become more pronounced in the past three weeks making me wriggle with involuntary movement.

After experimenting with my meds again over the past few days it seems that I am about at the correct level to avoid frequent "off" periods, during which movement is minimal and difficult, but the trade-off is that I spend much of my on time uncomfortably dyskinetic, or "Joe Cocker" to you lay persons out there. During these dyskinetic "Ons", I tend to wave my arms, grimace and stagger, presenting the appearance of a tipsy street preacher. This is even less charming than it sounds. I've begun to think of myself as alternating between "Off" periods and "Oaf" periods.

More important, it makes me a bit erratic at time keeping when flailing away at the mandolin. The upshot of all this is that I am now actually dialing back the strength of the electric current that flows to my brain. (Man, I just reread that sentence, how 21st Century can you get? My mandolin is acoustic, but I'm electric!) Let's hope I can achieve a harmonic convergence between medication and stimulation by Saturday night.

In the past I would have been spared this precarious position by the Ogre Who Says No, my old alter ego who could always find a reason not to do something new or risky. The Ogre would have pointed out, for example that Peter can't play the mandolin. And I never would have learned. Thanks for nothing, Ogre.

It's imperative to say "Yes" sometimes. To live "Yes". If you spend too much time wth the Ogre, you'll get smothered by the musty blanket of boredom.

So I'm sending the Ogre an invitation to the performance, (not that he'll come) and betting that everything will be OK, or better. And if I'm wrong, well, I'd rather answer to my band mates than the ogre any day.

Early Warning: Meeting coming Nov. 21

Greetings Southcentral Parkinsonians, and all ships at sea. The teletype is clacking madly again with this hot news straight off the wire. There will be a meeting of the Anchorage Parkinson's Support Group Saturday, Nov. 21, at the hour of 1:00 p.m. in the swank and glittering Anchorage Senior Center. The creme de la creme of Alaska Parkinson's celebrities (that would be you) will gather to gleam in the light of early afternoon.

Our meeting will be graced by the presence of the Queen of Caregivers, Betty Berry, who will lead a separate session for care partners. This is an invaluable time for caregivers to share their burdens and insights with one another, you don't want to miss it!

Meanwhile the rest of us will either hear a talk by yours truly on depression and PD, or watch a video on managing the disease. A fine time will be had by all.

See you there,

Peter

Paths to meaning, salvaging quality of life with PD

Parkinson's Disease is no walk in the park. Unless your park is home to a mysterious debilitating assailant who steals up to you and attempts to slowly rob you of your life.

Diagnosis is devastating to the person getting the verdict. The words "Disease" "progressive" and "incurable" are toxic enough when used together to render the gentlest, most well-meaning words of comfort hollow-sounding. Following my diagnosis, I appreciated words of comfort and predictions of spiritual growth as well-meaning administrations of an emotional placebo. A sugar pill offered to fend off painful reality.

The pain of Parkinson's is real. There is physical pain and fatigue that arise from involuntary muscle contraction and stiffness. There is the embarrassment of loss of control of your body. Tremor and drooling are not the skills one cultivates to become one of the glitterati. Slurring of speech, falling and sexual dysfunction? Those amount to many of the downsides of being drunk with none of the upsides. At least drunkenness wears off after a time.

There is financial pain. The meds are not cheap. And if you're lucky enough to have decent insurance where you work, guess what. Parkinson's is likely to take your job, too. The tentative financial security that most of us live with, or are trying to establish can go *poof* with Parkinson's.

It makes a person want to scream. Oh, sorry, more bad news, your voice also goes. Tell you what. Instead of screaming, just whisper loudly. What's that you say? Come again? Oh. Whispering isn't a satisfying substitute for screaming? Not for me either. The line forms here for a literal life of quiet desperation.

I could go on, but the picture should be clear. What we have here is a one-way ticket to the sewer. The sad fact is that this is so clear that a recent study found a person with Parkinson's Disease is five times more likely to commit suicide than a person without. Unsurprising. I considered killing myself when I first found out that I was heir to all that Parkinson's had to offer.

It would have been a monumental mistake. If you're a little lucky, if you're willing and able to junk what you can no longer carry, if you're willing to take new paths to meaning, you'll be surprised at what you can salvage of life. And at what you might find that you were unable to see before.

How does one live with, much less claim acceptable quality of life in the face of the Parkinson's parade of horribles? From my experience, I found a long list of things. Here are some that are critical. This list should be read with the understanding that it is only made possible by all that others have done to advance the treatment of PD, and the hope of future advances.

First, there are worse things than simple PD. Parkinson's is slow, and furthermore with modern medications and surgery the worst effects can be held at bay for an indefinite time, certainly a long one. There are forms of "Atypical Parkinsonism" more pitiless than normal Parkinsons that do not respond to present medications and bring on helplessness and dementia with a ferocity that is as frightening as it is senseless. (to see the blog of one man's courageous journey into this dark territory, look here)

We've all lost friends and loved ones to quicker killers like cancer. In the years since I've been diagnosed I've seen the sun rise over 2000 times. I've watched my son grow into promising manhood. I've shared love, music and travel with my wife. This is certainly better than not having this span of time. Yes Parkinson's will take it all from you, but there is a certain satisfaction in making the bastard work for it.

Second, if you're depressed (and if you're thinking of killing yourself, you are depressed) get help. You're not alone. Nearly half of people with PD are suffering depression. This is an area in which pride can become a stumbling block.It's hard to admit that you are not in charge of your emotions. Cut yourself some slack, you've got Parkinson's Disease. Depression is part of the beast. You want to resist the beast. The pills certainly help me.

Third, exercise. This is worth a whole post in itself. I've even written such a post, several in fact, here, here, and here, for example.

Fourth, Don't stop doing things you enjoy. I still ride my bike, not as aggressively as I used to, but still with enjoyment. I still make music and draw, in some ways better and in other ways worse than I used to. I still bake, read, enjoy movies. No reason you can't too.

Fifth, get involved with your support group. Life needs meaning, especially when it feels damaged. You are uniquely qualified to benefit others who share your plight. You are a Parkinson's Disease expert. In helping others you will help yourself. I have tested this theory and am surprised at how well it works. You'll get tired and exasperated too, but these are signs of life.

Sixth, take care of your care partner if you have one. They deserve it. And more important, they need it. Gestures of affection and help around the house may seem like small things, but anyone who knows even a little of what you are going through will appreciate that you are working on a different scale.

Seventh, cultivate hope. Ask anybody who has been around this disease and they'll tell you that the last twenty years have seen a tremendous rise in the understanding and care of those with Parkinson's. We're in a position now to see the day when Parkinson's, if not cured, can at least be treated as something to manange, instead of something merely to be endured. And a cure remains a tantalizing possibility that will become reality someday.

Eighth: Keep your sense of humor. This is what it's for. There's nothing funny about someone with no problems, unless you mean "funny strange". But Parkinson's? That's a hoot! The slapstick alone around my house is at least Three Stooges quality, and did I ever tell you about Pam's idea for the Parkinson's Bobble-Head Doll?

That's my list. It works for me at least. Does it amount to nothing more than a complex version of the Placebo Effect? It might. But a placebo that lasts this long this effectively is better than most medicines.

Movement disorder doc on the move

Heads up, Alaska Parkinson's Patients, Our visiting movement disorder specialist Dr. Alec Glass is Anchorage bound in early December. Dr. Glass will be hosted by Alaska Neurology Center, LLC 3841 Piper Street Suite T345 (Providence) Anchorage, Alaska 99508

Main Phone 907-565-6000

This is a great chance for you to consult with a trained Parkinson's Disease specialist without the expense of traveling outside. You can read more on Dr. Glass here.

Festinate forward!

Pete

Flash Molasses #10

I walk the line

TO SEE THE TINY PRINT, CLICK ON THE DRAWING

Don Giovanni, Carmen and Parkinson's

Don Giovanni, Carmen and Parkinson's? Those of you who can scratch your heads no doubt are scratching them right now, wondering what the connection is. But in fact Parkinson's is now the subject of an opera Gravity and Grace.

An opera about a disease that can leave you unable to move or speak, much less sing? It's a surprising choice of subject matter, but rife with dramatic possibilities. I have no clue how the story of this production goes, but I could easily write a story for a PD opera of my own.

One can imagine the hero shuffling onstage and singing at barely audible volume as other singers keep repeating "What? What?" Mystified by his condition, the hero goes to a series of doctors who misdiagnose him until the climax of the first scene when a movement disorder specialist informs him that

"You've got Par-har-har-harkinson's disease, my friend! It's progressive!"

(Chorus: "PROGRESSIVE!")

Doctor: "Incurable!"

Chorus: "INCURABLE!")

Doctor: "And practically unendurable!"...

(Chorus "UNEDURABLE! UNENDURABLE! UNENDURAAAAAAABLE!")

Doctor: "But a handful of these magic beans will see you through the next few scenes, they may result in sex compulsion or cause you strange unwanted motion. And when at last you cannot maintain, if all goes well we'll put a wire in your brain."

Chorus: "And come the day you can't maintain, you'll hope for wire into your brain, your brain, your gray defective brain"

Our hero clutches his head as the lights fade to black and the curtain falls on scene one.

Whew! Just contemplating the possibilities for scene two, the mind boggles at the operatic potential as the hero fights depression, financial ruin, family crises, and the loss of all that is known of normal life and everyday expectations. The possibilities for tragedy and redemption are there for anyone involved with this disease to see.

The question goes from "An opera about PD? How can you do that?" to "Why didn't I think of that first?" Followed by the realization that if I had thought of it first, I'd never have the momentum to get it off the ground. So here's congratulations to the authors for imagination and passion. Break a leg.

Yes, Once Again It's MEETING TIME!

Hello friends, fans and followers of the spectacular Anchorage Parkinson's Disease Support Group (Screaming, hysteria from wildly enthusiastic crowd). I want you to know that it is once again... MEETING TIME! (crowd erupts in massive cheer, several people faint) It's all happenining this Saturday, September 19th at 1:00 back at the spacious, gracious ANCHORAGE SENIOR CENTER!!!

What's in store for our intrepid band of northern Parkies? This meeting will feature a panel of highly-qualified PD experts giving us TIPS and TRICKS to help manage this disease. Who are these experts? I'm glad you asked because it's YOU! I'd like everyone to come prepared to share one or two small but helpful tips they have found useful in managing daily life with Parkinson's. Each of us is an expert because we live this disease every day. Together we have decades of experience. We'll share that this Saturday! See you there!

Peter

Sink Your Teeth Into Parkinson's Disease

My friend Dave, a neurologist with Parkinson's Disease, is always on the lookout for ways the PD populace at large can manage their disease better. One way he thinks that we can take some of the teeth out of the beast is to eat more healthily. (Dave is also a great believer in exercise. I get the impression sometimes that he thinks we should exercise while eating. Have you exercised today? Maybe you should stop reading this and do a few laps around the block.)

Bearing in mind such processes as oxidation and cell death, he went looking for foods that would counter these and other factors that contribute to Parkinson's progression. He found that the best way for people with Parkinson's Disease to eat is to follow the Mediterranean Diet. He just sent me a link to a updated version of the Mediterranean Food Pyramid, which you can find here.

Bon Appétit!

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.

Build Your Parkinson's word Power, part 3

One of the overlooked symptoms of Parkinson's disease is the appearance of new and imposing words in the daily life of the patient. Today we return to the great big world of great big Parkinson's words. Let's start with an obscure but compelling one: Akathisia.

What the heck is akathisia? It is a disorder that causes one to feel restless, to have an inexplicable desire to get a move on, to be, in the words of Steve Martin "A ramblin' guy". This just another example of the perverse nature of Parkinson's Disease: Strip a person of the ability to move, and then inflict restlessness on the poor soul. With Parkinson's you'd like to ramble, but you can't because you're frozen, and besides, you might fall down.

Which brings us to postural instability. This means you have difficulty balancing. Postural instability is an example of medical science taking something for which there is a perfectly serviceable phrase, impaired balance, and replacing it with something that has a more cerebral and clinical ring. What can we do about this? Learn from it! When the bank calls to tell you that your last few checks have bounced, don't say your bank book is badly balanced, say it is a victim of postural instability.

Another Parkinsonian condition that can interfere with the need to ramble is dystonia. Dystonia, the involuntary contraction and cramping of a muscle is a disease all in itself. But in Parkinson's it's just one of many miseries this hard workin' disease inflicts. Examples of dystonia might include painful curling of the fingers or toes. Dystonia can sometimes be held at bay with botox, so if you are going to catch it, try to get it where botox injections will leave you with a younger, less lined look. Just because you have PD doesn't mean you can let yourself go to hell.

Our final term for the day is multiple personality disorder. This is not caused by Parkinson's, but is instead a description of it. Parkinson's can progress slowly or quickly, can cause involuntary movement like tremor, as well as paralysis, and where other diseases are content to have one main symptom, Parkinson's can manifest in many ways. It's just a shame that with all those personalities, it couldn't have come up with at least one likeable one.

Note: Installment 1 of this series can be found here, and number 2 of this series can be found here.

Pete's Parkinson's Portaits: Actor Jim Backus

Give me a toe, Parkinson's Pas de Deux

There I was, frozen in the neurologist's office. They were measuring my ability, or in this case, my inability to move while off medication. I was easy to measure because hey, I was not moving much. As I hobbled from one area of the office to another, the attending neurologist suddenly planted her toe in front of my foot as if to trip me. This is not as far-fetched a possibility as it sounds. One of the standard parts of a PD exam is to be tugged from behind as a test of balance. Why not a "trip" test, too?

In fact what she was doing was the opposite. Without a word, she shot a toe in front of me. Without a pause I understood. "Step over the toe" my Parkinson's sense told me. And with a step as light as a dancer (OK, maybe not that light, think of the hippo ballerinas in "Fantasia.") I gracefully performed my part of the dance, executing a "Grand jeté de PD" over the helpful obstacle.

This became almost a game in our family, with Pam and Wiley enthusiastically throwing toes for me whenever I ground to a halt. I never asked but now realize that this is for them a concrete and simple way for them to help in the daily struggle I wage with this disease. By lending their toe, they can lend a hand.

Improving at increments of .1 volts

So everybody wants to know... Did the operation work? Are you doing better? Do you feel better? The answer, like so many things in the Parkinson's world is coming slowly. But that answer seems to be yes.

How can I be almost a month down the road from the operation and just now coming up with that conclusion? There are a number of variables at play.

Variable one: the operation itself can cause a temporary lessening of symptoms. As the brain swells from the physical insult of the operation, it somehow copes better with the typical symptoms of Parkinson's: tremor, stiffness, slowness. This leaves the patient wondering post-op if it's the "Honeymoon" or the placebo effect or actual lasting improvement.


Variable two: Once your stimulator is turned on, you begin to cut back on your pills, replacing medication with stimulation. So for a while you grope around with gradually raising your voltage while lowering your dosage. It takes time to find the balance. Because I move the voltage up in tiny increments of one tenth of a volt it has been a drawn-out process to replace the ability to move that I lost when I cut down my medicatiion. But I'm getting there.

Variable three: The head cold from Hell. My wife, son and Step mother all came down to help out and support me during the operation. They were punished for this good deed with a never-ending head cold that Pam is still recovering from. I got it too, presumably as punishment for their punishment. When one is sick on top of Parkinson's it ramps up your Parkinson's symptoms above their usual level. Throw that in with variables one and two, along with jet lag and lack of exercise, and you're looking through some muddy water.

Thanks to time and antibiotics some markers are emerging that add up to progress.

1.) TREMOR: What tremor?

2.) FREEZING: Episodes rarer as stimulation finally up to "critical mass"

3.) SINEMET INTAKE: About half the pre-operation level

4.) JOE COCKER: Amount of bizarre unwanted movements has been greatly reduced.

VERDICT: Progress!

Science catching up to the Spandex Angel

Flashback: When I was first diagnosed with Parkinson's Disease, I had an encounter with the Spandex Angel. The angel appeared before me, resplendent in raiment of finest Spandex, vibrant with hues of a vividness not found in nature. The angel was both buff and ripped. Lo, its abs were like unto six packs, and its buns were of steel. And I was sore afraid. And stress did cause my Parkinson's symptoms to wax, and I did tremor with a vengeance. And the angel spake unto me, saying "Fear not, for though thou walk in the valley of PD, thou art not entirely helpless. Indeed thou hast a choice: Sit like unto a lump, inert and pathetic, and let this disease carry you down in an ever steepening spiral, or fight back against your insidious foe with exercise. This is thy choice: Move it or lose it!" Thus spake the Spandex Angel.

The wisdom of this apparition has proved reliable, and almost prophetic over time. While the angel offered no scientific proof of its message, much promising evidence of the benefit of exercise regularly crops up in new Parkinson's research. Here is a link to a report from ABC on the benefit of "forced exercise". What is "forced exercise"? Essentially it means pushing yourself to exercise at a sustained level that is higher than you would ordinarily maintain. In this case, pedaling a bike at a higher rate than the subject ordinarily would pedal. The video with the report has some spectacular footage of my friend Dr. Dave Heydrick, a neurologist with Parkinson's Disease. The video shows Dave completely off meds and with his Deep Brain Stimulator turned off before and after a vigorous ride on a tandem bike. In the before footage, his hand shakes like an aspen leaf in the wind. In the after footage, the tremor is undetectable. Check it out, then hit the gym (After consulting your doctor about what kind of exercise routine is right for you.)

DBS Stream of Consciousness (Updated)

1.) Peter leads his handlers in a chorus of "I like New York in June."

Photos by Pam Dunlap-Shohl © 2009

June 30th, 5:30 a.m. Concrete gray San Francisco sky. Off my meds, mince to curb. Cram into cab with my handlers, Pam, Yvonne, and Wiley. Cabbie talkative, asks if we saw the gay pride parade "All those hairy asses." Pam won't let his scorn go unchallenged, "To each his own, I say" she replies. Myself, I think the parade missed a big opportunity by not having people in fezzes driving tiny cars around, but found it on the whole to have the same level of gravitas one expects at any parade. And it was certainly a good call to leave the military gear home. Don't ask, don't tell. We arrive at the hospital atop the hill, report to adult surgery and in walks Irish Annie, all business and brogue, she takes our information and when we tell her why we're there and who will do the honors, she is pleased "Ahh, she says, "The wonderful Dr. Starr" which is as good a way as any to kick off brain surgery.


2.) Be prepared for lots of paperwork

Just a few more forms to fill out before the drilling begins... The wonderful Dr. Starr offers yet another piece of paper, says "This one is in case you have any moral objection to a blood transfusion, should you need one." I reply that I have a moral objection to NOT having one, should I need it. "That would be my position." says Dr. Starr. Then, just because everybody makes mistakes sometimes, he produces a sterile sharpie marker and inscribes an "X" on either side of my temple to remind him where the drill goes in.


3.) X marks the spot, except the real spot is hidden by my full, luxuriant hair. So in this case X is just a reminder that they are supposed to drill around here somewhere.

And now it's time to meet the "halo" a dense metal basket that looks like a relic of some medieval dungeon, except with Velcro straps. The Versed, or as the medical staff like to refer to it "The good stuff" hits and... do I care that the Iron Maiden is being screwed to my skull? No, I do not.



4.) Less scary than it looks, especially when you're doped to the gills on "The good stuff."

I also do not care that I miss the part where the drill chews through my skull.



5.) Less scary than it looks, especially if you don't look at it. (Picture by Monica Volz)

But as the lead nears the target portion of my brain they must wake me to gauge my response to stimulation. The doctors have a sort of map to guide them, a composite MRI and CT scan, but they are also listening for the sounds generated by this part of the brain to let them know they are in the right neighborhood.



6.) The lower half of the graph above represents the electrcal activity of a single neuron. Courtesy of UCSF

Curious, I listen too. Am somewhat disappointed that the sound is much like static on the radio. But maybe that sound is more than we know, flick on your radio and perhaps what you hear as static is really the firing of the neurons in the deep brain of God. Oh wow. Hey, this Versed IS good stuff... Now that I'm awake, Dr. Starr puts me through some simple tasks and manipulates my forearms and wrists with abrupt precise movements. The anesthesiologist asks how I am doing. I confess that my butt feels like it is on hour 15 of a 14 hour flight. The entire process is repeated for the right side of my brain then followed by a short set of tests to help Dr. Starr with some research he is working on, and then it's back to sleep.



7.) The most dramatic thing you will ever nap through.

I wake in my hospital room, Mary Kay, Dan and Steve are soon ushered in, my dinner is also ushered in, and I destroy it with gusto. Best damn penne I ever ate. I feel bad eating in front of visitors, but not bad enough to stop. In fact I'm so hungry, I ask for another round. My room is shared with an older woman with breathing difficulty. We are never introduced, but separated only by a curtain, and with our defenses down we become intimate with each other's pain. She is in for a long night, as the staff must insert a catheter, this seems to take hours. I feel sympathy as I am catheterized, too, and not looking forward to the thing coming out. At some point during the next few hours the powers that be decide to go beyond fiddling with the catheter and mysteriously replace the entire patient. What became of her I have no clue. The new guy is obviously familiar with hospital routines, seems to have breathing troubles as well. My nurse Raisa, is not surprised to find me ready to check out the second morning, dressed and eager to get back to my family.

Maria at reception finessed wheelchair problem by offering office chair. Pam pushes me to elevator.

Monday 7:30ish off meds, wheelchairs locked up. Must sashay from curb to entrance

California, here we come @ 3 am

The Journey Begins: 1 a.m. Ted Stevens Airport

July 18 Meeting: Nothing but a picnic

Hello one and all,


Our meeting for the 18th of July will be our annual Summer  PD Potluck Picnic. It will be held at the fashionable and exclusive "Maison de Dunlap-Shohl" a handsome  though modest frame dwelling from the middle of the past century. We'll have salmon and buffalo on the grill, you bring whatever else you think we should have. New this year: Door Prizes!

This will be a great opportunity to get together, spill a few drinks, have a chance to talk PD, and examine the DBS stitches of Pierre, the Maitre de Hotel.

It all happens starting at 1:00 July 18 at 9601 Elmore  Rd. (formerely Abbott Loop Rd.)  To get there, take Abbott Rd East (uphill) through the intersection with Lake Otis Blvd. Continue up Abbott until you come to a stoplight that marks the intersection with Elmore Road, (formerly named Abbott Loop Rd.) take a right onto Elmore, heading South about a quarter mile and look for our driveway on your right. You will find the driveway marked by a large utility pole numbered 82-A, that stands directly across the street from our house.


We hope to see you, please let us know if you plan to attend.

Your Maitre D,

Pierre
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http://editorialcartoonists.com/cartoon/browse.cfm/DunlaP
http://frozengrin.blogspot.com/
http://offandonakpdrag.blogspot.com/

This is a test of the Remote Petecast System

Hello friends, fellow Parkinson's people, and ships at sea. I will be embarking shortly for what feels like the future. In my case, the future will involve holding very still while superintelligent beings and robots bore a hole in my brain and put the hurt on an overzealous part of my brain by implanting a wire in said brain part and goosing it with an electric charge to teach it some manners. Check previous posts entitled "It does take a brain surgeon" parts 1, 2, and 3 for more about the procedure.

You will be able to follow along here on the blog which Pam and I plan to update with what matters with my gray matter. The drill goes in Tuesday, welcome to the front row. Please refrain from smoking, spitting or yelling "Oh My God, I feel a sneeze coming on!" while my skull is open.

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http://editorialcartoonists.com/cartoon/browse.cfm/DunlaP
http://frozengrin.blogspot.com/
http://offandonakpdrag.blogspot.com/

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.

Alert! Meeting place for support group changed

Hello one and all

I was just notified by the Anchorage Senior Center Activities Director that they will be closing on weekends this Summer. This means that we will be obliged to move to a different space for June 20, July 18 and August 15. So to make life simple, let's meet at my house for those three months. We have moved to a different house, but remain in the same neighborhood. We can be found at 9601 Elmore Road. To get to our house you can (1) head South on Elmore, go through the light at the Intersection with Abbott and look for our large green mailbox on your left. Option (2) Head up Abbott until you reach the stoplight at the intersection of Abbott and Elmore. Turn right at this stop light and follow Elmore a short way looking for the large green mailbox on your left that stands at the entrance to our driveway. Important! I repeat: We have moved recently, so those of you who have been to our house in the past heads up! Meeting time is the usual 1:00 p.m. I will post the topics for the meetings soon.

Your Benevolent Dictator,

Pete

Flash Molasses #9

CLICK IMAGE TO ENLARGE

In case you think you've seen everything....

...you haven't. Unless you've watched this video of a man playing his banjo during his Deep Brain Stimulation surgery. Sadly, he was not cured of his banjo habit. There was also a tense moment when a nurse and the anesthesiologist absentmindedly began clog dancing while the surgeon chanted

"Swing your partner, Doe-si-doe! To the brain's deep part we go! It's not far, no country mile, drill that burr-hole mountain style!"

Disaster was averted when they found the patient could not perform a Buck-and Wing, and everyone was brought back to their senses.

I looked into this extensively, and can reassure everyone that playing the banjo has not been added to the battery of tests that a surgical candidate must perform to qualify for DBS. In fact, most teams prefer something soothing, and would appreciate it if patients could render a little light jazz on the pan pipes. Also on the approved list: Bassoons, dulcimers, Irish harps and ocarinas. Needless to say Theramins are forbidden in most operating rooms.

Must run. I need to work on my rendition of "Foggy Mountain Breakdown" arranged for pan pipes.

Keeping a Lid on the PD Beast: New Coping Resource

Here's an inspired idea from the Northwest Parkinson's Foundation. It's a place for those who deal with this problem to post the tricks that they have come up with to hobble the PD beast. It's called "The Tip Jar"








What are you waiting for? Click here to go there. GO!

PD Machismo

My bike parked in a "temporarily able parking" spot outside my doctor's building. I rode there and back from home. It would have been a total victory if I hadn't frozen in the hall for a while.

Festinate forward!

Special Meeting May13: Parkinson's and Dementia

Hello friends, mark your calendars for a special meting with Dr. Jim Leverenz on Wednesday, May 13th, noon at the Anchorage Senior Center. Dr. Leverenz is especially interested in the effects of Parkinson's Disease on thinking ability, and has broad knowledge of this topic. He plans a short presentation (Under 30 min.) to be followed by questions and discussion with the audience. Food will be provided.

A Health Care Jeremiad (part 3)

How sick is our health care system? Here's a clue. We name bad things like diseases after the good people who treat and study them. Parkinson's is just one example. It's named after Dr. James Parkinson, who described it centuries ago.

Good things, like treatments and cures, we name after... what? I'll put it like this: Ever been cured by a shot of Alexander Fleming? Nope. He made the discovery that led to turning mold into a miracle, the first anti-biotic. But the miracle, penicillin, got named after the mold.

This would be great if our plan is to give mold incentive to make medical breakthroughs. And given the other health care absurdities we face in America, it wouldn't be too far-fetched to believe it is our strategy.

But c'mon people! Surely there is a better way to align rewards with the behavior we all agree we want. It makes no sense to name bad things for people who are doing great work, and to give valuable recognition to things like mold, who frankly, don't give a flying fungus about what we think.

Let's divert our present approach to naming diseases and treatments to a path more likely to mean better health for all of us. Here's how to do it, and apply a little correction to Wall Street at the same time. It's a little complicated, but what isn't these days? Bear with me.

We're currently bailing out various toxic businesses. We seem to have no way to avoid rewarding these greedy incompetent failures. But there is "opportunity cost" for all of us. Once you commit resources to one cause, saving our economy, you cannot use it for another worthy cause, like saving our health. So let's get creative. We all know there is value in a name. That's why businesses buy the rights to name stadiums after themselves. They even have a term for the value they reap from it: Good will. Let's apply this time-tested and well understood principle to medicine. No, I'm not suggesting that we auction of the names of big-brand diseases to these internal parasites of our economy. Obviously they're not going to buy them.

But here's the deal. If they want to take our bail-out money we get to rename them after diseases. We'll give them a shot at changing back to their old name down the road at an auction. All proceeds will go to defray health care costs and expand medical research. Thus A.I.G might become Irritable Bowel Syndrome (I.B.S.) until they pony up for something they find more becoming.

Matching a company to a disease will pose some challenges. The number of banks out there with predatory credit card practices will make it tough to decide who gets to be Swine Flu. But don't worry. There are plenty of diseases to go around.

One of the beauties of this plan is the numerous beneficial side effects. Think how much more fun following business news will be when the headlines say things like "Analysts scratching their heads over Psorisis sell-off", and "Earnings report beats down Chronic Anxiety", or my favorite:"Parkinson's slow to react to market changes"

Furthermore these names would serve as a reminder of company history. Memory of their misdeeds will fade over time, but we'll always be suspicious of a company branded say, "Kleptomania Inc."

And let's not forget that this is the kind of reform that will do more than contribute to advances in health in the future. It will make us feel better today. And in the health care field, isn't feeling better the very definition of successful treatment?

Hey Alaska, The Parkinson's specialist will see you now

The wait is over! Alaskans with Parkinson's Disease can now arrange to be seen by a specialist in treatment of this complex condition.

Dr. Alec Glass will soon begin his quarterly visits to Anchorage to provide care to Alaskans who suffer from Parkinson's Disease. His first round here will be the weekend of the 22-24th of May.

Dr. Glass is a fellowship-trained specialist in movement disorders. He practices at the University of California, San Francisco, and with the VA in San Francisco. You can learn more about him here.

To make an appointment to see Dr. Glass, contact


Alaska Neurology Center

3841 Piper Street Suite T345

Anchorage AK 99508

907.565.6000 Phone

1.866.977.2562 Toll Free/Fax

Please help spread the word among people you know who could benefit from this opportunity to better manage the PD beast. This is an excellent chance to move toward better quality of life without having to pass through Seattle or Portland to get there.
Gargantuan thanks to all involved in making this happen, especially Joanne Power, and Dr. Glass.

Festinate forward!

Peter

Dysko Boy, or, Body English is My Second Language

Oh man! I just had an unexpected encounter with reality. I got a note about a week ago from my friend Pat that video of my talk to his journalism students is available on the Web. My present motto is "No Fear," so I pulled it up.

The video loaded, and suddenly there was this guy on the screen writhing around and jabbering at light speed. A herky-jerky whirligig who was disco dancing while a colony of fire ants made its way up his pants. That whirligig was me! Those were my pants full of fire ants! I was amazed.

It was like seeing me play either end of the table against myself in some white-hot, solo ping pong match. Or maybe conducting the Amphetamine Philharmonic Orchestra in a 30 minute rendition of Wagner's entire Ring cycle. Or a bowler putting the entire Oxford Dictionary of Body English on a ball in the time it takes it to roll to the far end of the lane.

It was tiring just to watch. Fortunately the image is about the size of a match book. Anything larger would be an aerobic workout for the eyeballs that would leave the viewer panting and soaked with sweat in their chair.

One of the reasons I was so struck by the sight was that I had no clue I was this consumed with excess motion (called "dyskinesia" by the cognoscenti.) It's not caused directly by the disease, but instead by the brain's inability to process the amount of medication that I must take to avoid extended times when I can barely move.

It's a trade-off: Better to have extra movement than not enough. But it does require great concentration when trying to make a line go where you want it to go in a drawing. Often I spend as much time Dysko Dancing while attempting to draw as I do actually drawing.

But really! I had no idea I was as hyper as I appear on the video.

All I can say is it looks much more dramatic from outside. At least that's all I can say in written English. In Body English, you can't shut me up until the meds wear off.

(And, oh, all right. If you must, you can view it here.)

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.

(Ahem) Supreme Leader Screws up AGAIN. Announcing a change to our Saturday 18th of April Meeting

Once again friends, I have failed you. One has to ask, "Peter, is this so damn hard?" Sadly, the answer for me appears to be "Duh!" Once again I have made a mockery of your trust, the faith that you so bravely placed in me, and that I have once again abused.


My only consolation is that this has happened with such dreary predictability that I rather doubt that any of you took it seriously when I blithely announced that the fabulous Ann Ver Hoef, Speech Pathologist Extraordinaire would address our hearty band this Saturday. She will be away, and we will reschedule. We still expect Betty to lead a caregivers session, and I will have some adrenalin-fueled surprise topic ginned up for the rest of us by Saturday.

Abashed, abased, but consistent!

Peter

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.