Video: Pete more or less alive at the 2010 Hope Conference

Here is video of the speech I gave Nov 6 at the 2010 Hope Conference. The talk is about 30 min. Unfortunately the camera doesn't stray from me once, and the visuals that I incorporated into the talk will have to be imagined by you, the viewer. I will drop them into the text of the presentation that appears in preceding post to this one so that you may read it and experience them roughly as they occurred in the speech.

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.

Pete's Parkinson's Portraits #6: Vincent Price

Click to enlarge (if you dare.)

Carping Tunnel-Vision Syndrome

ABOVE: Shipwrecked by Parkinson's Disease


As a cartoonist, I carp for a living. One of the hazards of my job is that the first thing I do each day (after the ritual swallowing of pills and a trip to the bathroom) is look to see what the worst news is in our paper. From the Supreme Court to the lowliest local pol, I begin my day with the malefactor who did the most damage since the last time I checked. (By the way, did you notice that I'm ALREADY carping here? I'm a natural!)

This is like startin' your mornin' with a steamin' hearty bowl o' hot, nutritious worms. After a while it colors your attitude toward humanity. God only knows how the reporters who cover the courts and child welfare avoid becoming misanthropes, and I suppose many do.

Paradoxically, Parkinson's Disease has been the antidote for my case of mild misanthropy. While I loathe having this disorder, it has provided a mirror image alternate to the viewpoint brought on by watching the bozo parade.

Instead of dwelling amid the latest creative disasters of the inept and the evil, I'm a Gulliver in reverse. Being shipwrecked by Parkinson's Disease has fetched me up gasping and coughing on the Island of the Caring and the Competent.

It is another world. The inhabitants there are the likes of our friend Betty. Betty lost her husband to Parkinson's Disease. As far as I am concerned enduring that earned her a free pass on ever having to face PD again. Betty disagrees. She has volunteered for years as the voice of experience to care partners who need light on their lonely road. She often leads separate sessions for them during our monthly support group meetings. It is one of the most important services our little Parkinson's club offers.

It is the world of Dr. Dave Heydrick, a neurologist with Parkinson's who has put his intelligence, humor, charm and discipline into the mission of uncovering all he can about coping with PD and passing his learning along to the rest of us. Dave is a man who provides those of us drafted into this battle with the precious and indispensable commodity of credible hope.

It is the world of Bill Bell. When Bill's mother got diagnosed, Bill became her advocate. On finding so little support for area people with Parkinson's and their families, he went on to become an advocate for everyone in the Pacific Northwest. Smart, and an unusual combination of the good-natured and the hard-nosed, Bill put his talent and energy into running the Northwest Parkinson's Foundation. His newsletter now goes around the world, but he still seems to know and take an interest in every person with Parkinson's in the Northwest.

It is the wider world of researchers and doctors who devote amazing creativity, skill and discipline to taking care of patients and taking this disease down. To read about deep brain stimulation or gene therapy is to glimpse what seems like science fiction come alive.

I can't say I'm happy about the circumstances that brought me to this place where the people are busy trying to make the world better, and succeeding at it. But I'm amazed and grateful that it exists.

I Only Pass Out in the Best Places

I am under strict orders from my son never to do this again. We were dining with family, and I was enjoying a beer and a well-prepared meal in a sunlit restaurant in exotic Kirkland. As conversation wafted around I became distracted by an odd sensation in my stomach, a feeling akin to what you might experience if you swallowed a live and angry badger.

My initial Badger Pacification Strategy (BPS) was denial. Skip this tack should this happen to you. It's useless. As the situation rapidly deteriorated, I adopted BPS #2: Lowering my head to the table in an attempt to control the mounting nausea. You might want to skip BPS #2 as well. No help.

It became clear that I was down to two choices. Release the "badger" in our cozy booth, (BPS #3) or make for the restroom and return the little guy to the wild via the porcelain porthole (BPS #4). Clearly there is no scenario under which #3 could be defined as successful, which left only a desperate attempt at #4.

Thinking quickly I enlisted Pam as my handler, the better to spread the inevitable blame when the doomed mission went grandly awry. I rose decisively to my feet, and then (I'm told) crumpled decisively to the floor (BPS #5)

Miraculously, BPS #5 worked great. At least on the badger. But one doesn't crumple to the floor in the middle of a restaurant discreetly. A hullabaloo followed. People were summoning help via their cell phones before I hit the carpet. When I came to, I looked up into a circle of unfamiliar and concerned faces. They assured me that the paramedics would arrive soon, and hovered close until they arrived.

I was still gathering my wits when the team showed. They lost no time in festooning me with wires connected to machines that read vital signs. I was feeling much better and after explaining about the hazards of rising too quickly when on Parkinson's medications, which can lower blood pressure and cause fainting, I managed to talk them out of taking me to the hospital.

This moment of helplessness paradoxically granted a measure of hope. We are bound to one another by our frailty. Confronted by my small catastrophe, strangers responded with swift compassion.

I wobbled out of the restaurant under my own power but with my family arrayed in close formation around me. As we wound our way to the door, I carried a new intimacy with the anonymous throng returning to their dinners.

The barriers had been breached, and as we left, it was possible to sense a common thought that clearly ran through the minds of many: "Damn, I hope I didn't order whatever HE had!"

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

CLICK IMAGE to ENLARGE

Handy Doctor's Guide of Stupid Things to Avoid Saying

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

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


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


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


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

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

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

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

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

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

FLASH MOLASSES episode one

R.I.P: The Ogre Who Says "No."

Who was the Ogre Who Says "No."? Well, for quite a while, he posed as me. This ogre alter ego crept into my character with patient stealth. The Ogre Who Says "No" set up shop in my head masquerading as the voice of reason. When someone had to play the heavy, the adult voice of delayed gratification, the Ogre was resigned but resolute, and stepped in.

He could be counted on to point out why we should stay home instead of going out, why we didn't need pets, or why we weren't saving enough. The Ogre phrasebook was full of lines like "Sure, but..." and "Do we really..." The Ogre was fluent in several languages because he only had to master one word. Nein, nyet, non, no.

The ogre was no dummy, and often had a point. The truth is that there are always good reasons to say no to just about anything. And that definitely includes saying "no" to the Ogre, who was a pain in the ass to live with. The Ogre had no joie de vivre, and without joie, vivre is thin gruel.

Can I blame Parkinson's for the coming of the Ogre? Probably not entirely. But the Ogre was not me. My Dad even noticed and was disturbed enough to contact my sibs asking if they had noticed that I had lost my "Ebullience." And given that the Ogre keeled over and died around the same time I got up to snuff on my Parkinson's medications, it's hard not to associate the two.

We buried the Ogre in a simple pine box. We never leave flowers. He wouldn't approve. But we do visit his grave now and again to honor him, and to reflect on his last words, carved on the cold granite of his headstone: "Carpe Diem".

"HOWYADOIN"?

I realize this is over the top, but even before my diagnosis, the question "How's it going?" used to plunge me into a swirling metaphysical struggle where the imperative to tell the truth collided with the imperative to be polite. Like most people, I went with politeness.

(We'll have a brief pause here while those of you with smart mouths hoot your disbelief. Are we through now? Good.)

This deference to courtesy came at a stiff personal cost. I had to bite back choice lines like "Oh, the usual quiet desperation, you?" Or another favorite, "Filled with fear and loathing." And let's not forget the cheery, optimistic "Clinging to sanity in a world gone mad."

The discovery that I have PD simultaneously validated those unspoken replies, and rendered them obsolete. A whole new army of unvarnished truths have to be beaten back. A few of my current favorites "Suffering an irreversible slow-motion brain injury, what's up with you?" Or, "Working hard, hardly working." Then there is the clinical "Oh, a little dystonic, bradykinetic, and depressed." Or when the meds are working "Adequately medicated, thanks!" Which lead me to what I have settled on as a reply that seems to satisfy both truth and courtesy: "Adequate, thanks."

For some reason, this usually elicits a laugh, but I have decided it's probably best not to ask why.

I know I am not alone in this. Anyone who has come up with an answer that solves this small but persistent problem in a tidy and honest stroke of inspiration is invited to post a reply.

Adequately,

Pete

Pete's PWP Portraits No.3: Muhammad Ali

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

You can do more than you think you can

ABOVE: Homage to Sylvain Chomet

Alzheimer's is the forgetting disease, but there is something that Parkinson's keeps making me lose track of: The fact that I don't have to quit doing what I enjoy because of PD. It's true that lots of my old skills don't measure up to their former levels, But as G.K Chesterton said, "Anything worth doing is worth doing badly." This was a defense of amateurism, but by all that is shaky, it also applies to living with PD.

I love riding my bike, I used to do a regular 22 mile round trip commute on our wonderful network of Anchorage bike trails. When I was diagnosed with Parkinson's,I was especially glum about the prospect of losing my ability to balance. No balance, no bike. I kept at it for awhile, then had to sit out most of a rainy season. When the next season rolled around I talked myself into the idea that I couldn't ride anymore.

I was working at home one day a little while after I reached this dispiriting conclusion. My son had driven to school and Pam had taken the Jeep to work. The phone rang, and when I picked up, I was told by the head of security at my son's high school that we had "A Situation" with his car. She explained that a roving security guard had peered into our Subaru and spotted a weapon. Said guard had the car staked out and could not leave until I dealt with the situation.

Calling me to let the guard return to "roving" mode was actually plan "B". The original idea was to jerk my son out of the middle of his AP economics test and have him retrieve the forbidden implement of destruction. Sanity prevailed, in the form of an alert assistant principal who knew that this kid would not be a threat to the school if he had a bazooka in the car. (Come to think of it, the car itself was a bigger threat, but he can explain that to you himself here)

Which was how I ended up telling an extremely unhappy head of security that, having no car, I would walk right up and take care of things, but since I had Parkinson's Disease, it would be about 45 minutes. This naturally left her delirious with happiness. At least I think it was happiness.

I trudged into the gloom of the garage to put on my shoes and the dull gleam of the gold paint on a friend's road bike caught my eye. It seemed worth a shot. It was.

I rode uphill all the way to the school and confiscated the weapon. I know you've been wondering just what it was. Machete? Switchblade? Gravity knife? Nope. It was a tiny folding saw with a 6-inch blade and a bright yellow handle that my dad had given us in case we broke down in the middle of a forest and had to hack it down to get back to civilization, or, if we were feeling truly ambitious, use it to start a whole new civilization. Which seems like a better idea all the time.

My job done, I signed a few autographs kissed a few babies, rescued a treed cat and rode home, delirious with happiness. I was back on a bike.

Anyone seen my comfort zone? (part one of two parts)

For those of you out there who fear getting lazy, settling into a rut, or becoming complacent about the little things that make life so rich, allow me to suggest Parkinson's. It'll force you right out of your comfort zone.

I hear you murmuring out there "But... am I QUALIFIED for PD? Am I good enough? Can I go mano-a-tremoring-mano with a disease that will require of me resourcefulness, patience, humor, humility, the help of those that love me, the patience of those that encounter me? And let's not forget the sheer dinero, the moolah, the swag to afford those pricey pills without which I look like a reject from an casting call at Madame Tussaud's Wax Museum... can I do all that?"

Don't sweat it! Anyone can have Parkinson's, even teenagers. And don't worry, there is plenty of PD to go around, and more coming soon. And I'm talking to you, you temporarily able Boomers. The average age of onset is 60, so what does that tell you? Ready or not, here it comes.

If diseases had slogans, Parkinson's would be "Disease of the Future." Just check the age curve of the United States. Heck, I'll do it for you. Here we are..

According to the State of New York Long-Term Care report, the population of citizens in the U.S. 65 or older will grow from 11% to 20% between 2000 and 2030.

It'll be a PD population boom. Which at least means we'll be a potent political force. If someone will be good enough to take us to the polling place.

The Mask

(Cartoon by Peter Dunlap-Shohl, special thanks to the Gord Carley archive! Click to enlarge)

Anyone can see some of the damage Parkinson's disease visits on those who have it. Tremor and shuffling are painfully obvious. But there is another set of problems spawned by what you don't see.

With the loss of control of facial muscles we also lose a significant chunk of our ability to communicate. Instead of expressive smiles and frowns, we present a deadpan, blank mask that unnerves others.

Much of the sense of what we all say is not in the voice or words, but in the subtle visual cues and signals the face sends. We all interpret speech in the light of what we read in a person's expression. People with Parkinson's can slowly lose the ability to enhance communication this way without even knowing it.

Think about the problem of misinterpretation of e-mail. The sender composes a message in which the words seem clear as the send button is pushed.

The recipient looks at the cold, expressionless type on their screen, and without the guidance of the visual and tone cues that we all use to correctly interpret meaning, assigns meaning that isn't there. Often the missing meaning is misread, and the interpretation negative.

Then consider the way we get around this problem. We insert little faces that clarify our intent ;-)

This is exactly what those of us with Parkinson's Disease are not doing in face-to-face conversation. We are sending spoken email, without the emoticons :-(


Instead of this :-) , or this :-( , what we send is this :-| . Nothing but :-|

To complicate things further, we are often unaware that we are not sending the proper cues. And worse, as people look for these cues and cannot find them, they get frustrated, confused and eventually angry.

Once while taking care of some support group business at a bank with my friend Lory, I sensed rising irritation in our banker. I was at a loss as to the cause, but then realized she was interpreting our Parkinsonian lack of expression as anger. I stopped the rapidly deteriorating meeting, and explained our featureless expressions.

The change was immediate and dramatic. She went from grim to jovial in seconds flat. And Lory and I, having solved the mysterious problem, were elated :-|

The Spandex Angel

I was vague about what lay in store after I got my diagnosis of Parkinson's disease in early January, 2002. But I knew it was bad. Preliminary forays to doctors and on the Web were daunting. I could look forward to inexorable progression of a creeping paralysis of voluntary movement. The loss of the ability to walk, to speak, to draw. A disease treatable with medicines that work for awhile, and eventually bring on side effects as difficult as the illness. This is what I was told was coming.

But the last thing I expected was the visitation of the Spandex Angel. After decades of struggling with God, I'm a religious skeptic. So I was taken utterly by surprise when a voice that spoke without words but with unmistakable intent and intensity came to me, and said "You have to exercise. If you don't, your downward spiral will be even steeper and more drastic."

As it turned out, the angel knew whereof it spoke. As I poured on the exercise I noticed temporary improvement in my symptoms. And there are a growing number of exciting studies like those done by Dr. Jay Alberts of the Cleveland Clinic that show definite symptomatic relief after intense exercise. Here's an excerpt from the clinic's web site:

"Dr. Jay Alberts, a neuroscientist at the Cleveland Clinic in Ohio, says in the past, exercise hasn't really helped patients. But by pushing them out of their comfort zone and forcing them to pedal much faster than they would normally, symptoms can improve more than they do from drugs.

'After eight weeks of exercise, symptoms have improved 30 to 35 percent for patients, which is a pretty dramatic improvement,' Alberts explained."

What's more, there are other studies that show possible neuroprotective effects. And exercise is a proven mood elevator. That's significant for those of us who have PD, which is often accompanied by depression.

Plus exercise is cheap, rarely results in an overdose and doesn't have to be imported from Canada. And no forms to fill out or file. One note: It is wise to consult your doctor before ramping up a serious exercise regime.

But take it from me, take it from Dr. Alberts, or take it from the Spandex Angel, "YOU GOT TO MOVE!"