Friday, February 29, 2008

Tuesday, February 26, 2008

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.

Sunday, February 24, 2008

Pete's PWP Portraits: An Off and On series

Salvador Dali, Surrealist painter. This is the first in a series of drawings of famous people with Parkinson's Disease. These will appear from time to time as the mood strikes. Why start with Dali? Because he's fun to draw!

Friday, February 22, 2008

Urgent bladder holding on line one

OK, who wants to talk about incontinence? Me neither. Let's come up with a nice, non-threatening euphemism. Doctors often have a strangely poetic way with words,cue the doctor! And the doctor says... "Urgent bladder".

That's much better. It sounds like you're on a dangerous and important mission. Or at least, your bladder is. Unfortunately, this selfish little organ is not the type to stand up well under duress, and when the going gets tough, the bladder gets going.

Several ways of dealing with this little bully come to mind:

1.) Not drinking Advantages: Nothing in, nothing out. Disadvantages: Dry mouth, dehydration, premature death
2.) Adult diapers Advantages: Relive your childhood. Disadvantages: Humiliation, self-loathing, reliving your childhood.

Great. What we really need here is another option. Fortunately I just happen to have one. Voila!

3.) Kegels

Those of you who were paying attention in childbirth class might remember these. Kegels are taught to expectant mothers to strengthen muscles that are stretched during delivery. While flipping through a promotional pamphlet from On Health, I noticed that they recommend this exercise for both Women and men to control urinary problems. Those of you who paid attention in childbirth class can stop reading now. For the rest of you...

Here is how to Kegel, adapted from wikiHow

Locate pelvic muscles. You can do this by stopping the flow of urine when you are going to the bathroom. Then start it again. These are your pelvic muscles. Do this only to find the muscles. It's not healthy to stop and start urinating.

Tighten and relax these muscles daily. Try and work up to 100-200 times a day. Or choose a certain thing to associate with them - for instance, kegel at every red light you come to, or every time you open the fridge.

* Get into a comfortable position. You can do these exercises sitting in a chair or lying on the floor. Relax buttock and tummy.
* Imagine you are trying to hold back urine; lift and squeeze from the inside. Try and hold that action for the count of three.
* Imagine that you are trying to stop yourself from passing wind; lift and squeeze your anus and hold for a count of three.
* Combine those two movements into one fluid movement. Starting from the front, lift and squeeze, don't let go, follow through to your anus, lift and squeeze. Relax. Hold this position for 10 seconds.
* Rest for 10 - 20 seconds and repeat.
* Work towards 12 strong holds and as it starts to become easier, try holding for longer, and repeat as many times as you can.

Next post: Aerobic Kegeling!

Thursday, February 14, 2008

The greatest PD love story ever told

(Above, Abelard notices a twitch in his finger as he prepares to dispatch a valentine to Heloise)

I know what you thought when you woke up this morning: "Hey! Valentine's day! That means romance and Parkinson's Disease!"

You didn't? Well, you will from now on. Because one of the great romances of all time was conducted in the 12th Century between Abelard and Heloise. Abelard is believed to have had PD.

Of course there was no way to diagnose him, and PD was not even identified as a disease way back then. But having a disease that wasn't even "invented" yet was just one more trail for him to blaze. Abelard was always way ahead of his time- A Renaissance man living in the Middle ages.

Here is a good look at his life and accomplishments.

Abelard was a formidable wit, a teacher, a theologian, a musician, and as a debater, reputed to never lose an argument. He is held today as likely the foremost logician of the Middle ages and was a champion of reason.

But when it came to love he was so logical that when he was smitten by the brilliant and beautiful Heloise, he engineered a job as her teacher, and was castrated by her uncle's goons when the whole sorry mess hit the tabloids,

Heloise went off to a convent and Abelard spent the rest of his life getting in and out of trouble with the Church. Among his pupils were kings and three popes.

The two were to carry on one of the most famous exchange of love letters of all time, setting a standard for doomed lovers equaled perhaps only by those hormone-addled (and fictitious) teens, Romeo and Juliette.

Sure, many a man has lost his heart to the woman of his dreams, but answer honestly guys, how many would toss in their testicles, too?

Monday, February 11, 2008

Anybody seen my comfort zone? (part two)

Shortly after my initial diagnosis I got a visit from an old friend. A person of warmth and intelligence, he is someone whose judgment I trust. He predicted a fruitful, if difficult time, 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."

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

But first, I had to slam into a wall. 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 been my living for 25 years. I wasn't ready to give it up to PD.

I had one last reed to grasp. At work we are badgered to sit in an ergonomically correct way- something that I slid by as the rare bird who didn't sit at a keyboard. I knew that there were electronic drawing pads that would enable me to approximate this platonic ideal of posture while 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 the idea would work. And so far, it does.

Drawing while watching the screen instead of your hands is no big trick. When you take classes, you 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.

When I arrived at that lofty peak, that dearly bought goal, that ultimate moment 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 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?

Since then I have been on a full-scale creative bender, exploiting the color, texture and effects that the computer makes possible. In the past year I have even been able to add in sound and motion, thanks to the animation program, flash. To see for yourself, take a look at the animation posted below.

The world is accelerating while my body is braking. But at least my drawings can move.

Wednesday, February 6, 2008

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.

Friday, February 1, 2008

Forbes Video of Former Intel Boss Andy Grove

Here is a link to video of the extremely wealthy (and dapper) person with Parkinson's, Andy Grove. Grove, who has put millions of dollars into PD research, advocates revamping the way research is done. To watch, click here
Thanks to APDSG member Jim Byrne for alerting me to this.

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 :-|