I walk the line

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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.)