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!

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!

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?

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.

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.

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 :-|

Advancing to the rear.

http://offandonakpdrag.blogspot.com

So what does it mean, to be "off" or "on"? Simple: On is when your medication is working. You can walk, talk, run or play your dobro. Off? Off is for whispering, shuffling, or posing as a living mannequin in a department store window.

My most memorable off so far was at Seatac airport this Summer after a red-eye flight from Anchorage. I made it to the gate from the jetway, and then was utterly unable to do more than mince. Ever try to mince through an airport?

Having nothing pressing to do, we decided to to sit down, drink some coffee, and wait for the medication to kick in. Time began to mince, then to crawl then went completely off its meds. A few failed attempts to stride left me frustrated and restless.

Which was when my sense of whimsy intervened. If I couldn't walk frontward, maybe I could by God walk backward. To everyone's surprise, not the least mine, I took off in reverse gear and strode backward down the terminal at a respectable rate, albeit blind to where I was going. Pam and Wiley rallied quickly and provided navigational bulletins until we arrived at the baggage claim, strangely exhilarated.

We now interrupt this blog to bring you this commercial message

http://offandonakpdrag.blogspot.com

Hi gang,

I am putting together a bulk order of the Parkinson's video from neurologist and PWP Dr. Dave Heydrick. If you are in the area, can make it to a meeting to pick up your copy, and would like to be included please respond by this Friday, Feb 1. They will give us free shipping which puts the cost at a flat $15.00. For more info about the DVD, you can look up the Web site here


Full disclosure: I worked on this project and have a stake in its success.

Yr faithful servant,

Pete

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!"