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!"
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.
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!
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.
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.
Welcometo all with an interest in Parkinson's Disease. This blog was to be an information clearinghouse for the Anchorage Parkinson's Disease Support Group, where meeting schedules, agendas, speakers etc could be found. It's still that, but has also become a sort of therapeutic hobby. So I invite you to join in the discussion and experience a little therapy as well. This will be as interesting as we as a community make it. Think loud and sound off!
Our Support group meets the third Saturday of each month at 3:30 in the afternoon. The meetings take place at the Anchorage Pioneer Home , 923 West 11th Avenue in downtown Anchorage on the fifth floor in the West lounge. You may call 350-9691 with questions about the group and meetings.
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The Knight Digital Media Center, judges of the Alaska Press Club's annual journalism awards selected The Alaska Parkinson's Rag for second place in the "Best Blog" category for 2008. Here is an excerpt of their comments:
"...Alaska Parkinson's Rag is many things: a community resource, a humor column, a science and medicine explainer. But it's also something that few blogs ever manage to be: addictive and gripping. Everything seems to work just right on this blog, and it is a powerful testament to what a person can achieve in this medium. "