Shivering Penguins! This blog is a year old!

"Troubles Overcome are Good to Tell" -
Italian Proverb, from the writing of Primo Levi

Yikes, this blog is now just over a year old! The first post went up January 19, 2008. In the following time we've looked at everything from the Greatest Parkinson's Love Story Ever Told, to some of the dumbest things doctors say, when delivering a diagnosis of Parkinson's Disease.

Since I installed a hit counter about two weeks into the project, "Off and On" had a total of 2,695 visits (only half of which were me checking for comments) from 66 countries and territories all around the World. There have been visits from every continent but Antarctica, where the penguins are all in denial "Tremor? Nah, I'm just shivering, you idiot."

Here is a sample of visits from unexpected locales tallied for the year by my hit counter: Israel (8 visits), Malaysia (7 visits), Singapore (7 visits), Turkey (6 visits), China (4 visits), and let's not forget Iran, Bangladesh, Belarus and Jamaica, with one visit each.

Wow. Parkinson's Disease: Bringing the world together.

I hope, dear reader, that this has been valuable to you. It has certainly helped me to cope. Writing is a sort of deliberate thinking. It is a focused exploration which simultaneously creates ideas and reveals them. When I try to explain my thoughts and feelings to you, I come to understand them better myself. Or at least, it feels that way.

Just as important, your comments and even your silent visits, (which are currently running between 5-15 a day) tell me that there is solidarity and understanding out there that reaches around the Globe. That is heartening. I'm sorry that you who read this were dragged into the struggle, but it is good to know we do not struggle alone

What does the future hold? Dangerous question, but I can go at least this far: More trouble and more telling. Because not only are troubles overcome good to tell, telling is part of the overcoming.

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.

Encounter with the supreme identity thief

Remember the "Me Decade"? That's what writer Tom Wolfe christened the 1970's . It was fashionable at that time to attempt to "find yourself". This was a common pursuit of the day, and a weird one. It conjures the idea of some tragic mix-up in the maternity ward in which your true self went home with the wrong family and then moved across the country without leaving a forwarding address.

Eventually it would fall to the strong and the brave to go out and track their fugitive self down, like an escaped con. As with any great quest, this one was fraught with difficulties. It's a given that your real self would be found somewhere more exciting and exotic than wherever you were at the time, but where? And how would you know when you found your true self? What if you found somebody else's true self and mistook it for your own? You might live the rest of your life as someone else, and never know. Which for some might not be a bad idea.

Most people gave up or got over it by the mid eighties. And it was never much of a problem for me. I always defined myself as an Alaskan, and a cartoonist, and later expanded into husband and father. For the most part, what I did was who I was.

Then came Parkinson's Disease, the identity thief supreme. I was a guitar player who didn't play the guitar, a cartoonist who was struggling to draw, a father who was too tired to cook or to even stay up and share a movie, a husband who was cranky and listless. (See my pal, the ogre here)

"Finding yourself" seems like a foolish game. Losing yourself is terrifying.

Eventually diagnosis and medication restored much of my original drive and personality. But Parkinson's is a moving target, and medication only approximates what my friend Dr. David Heydrick calls "The exquisite precision" of the dopamine controls of the human brain. And as we know too well, the medication eventually becomes as problematic as the disease.

But, for now, the person I think of as the real me, does glint out occasionally and briefly, from between the manic, nattering chatterbox I am at the crest of my dose and the semi-paralyzed zombie I become at the ebb. Like a canny performer, he always disappears before wearing out his welcome, leaving Chatterbox and Zombie Man in a state of anticipation about the next appearance .

The question isn't "Who am I?" or "Where am I?" It's "When am I?"

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

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.