February PD update for Anchorage

Hello friends. Here is what I know about the local PD scene for February. The telehealth seminar will happen on Feb 14. the topic: Gamma Knife surgery, when DBS is not an option. Everyone who is familiar with the Gamma Knife procedure, raise those hands. Great. I will see the rest of you at the presentation. It takes place at 1:00pm, Providence Hospital room 2401. For the curious, you can look here for a basic outline of what Gamma Knife is.
Our Feb 19th monthly meeting will be an audience participation deal. Think of your best PD-related story, something that you experienced as a result of your PD that really made you think, laugh, get mad or get smarter about PD. This will be a great chance to exchange PD lore and expertise among the group. Regale us with your tale! I hope to see (and hear) you this February.

For caregivers, I believe Betty will be on hand to lead you in a separate session.

A Cartoonist's Cause (Cross post from "Frozen Grin")

(Click image to enlarge.)

I've come across another place where Parkinson's Disease overlaps cartooning. Richard Thompson, a talented cartoonist and the author of the "Cul de Sac" comic strip has announced that he is also in the early stages of the post-diagnosis phase of the disease.

Unfortunately this insidious disease inflicts much damage before it is detectable. Parkinson's Disease is like a slow-moving brain injury that eventually robs its victims of the ability to initiate voluntary movement- to walk, to speak, to draw. There is no cure. However with careful management of the medications, diet, and exercise there is every hope that Richard will be able to produce his beautiful drawings for many years.

In the meantime, Richard's friends have organized a fund-raising effort on behalf of research into Parkinson's Disease through The Michael J. Fox Foundation Cartoonists are asked to contribute artwork for a book and auction to fund the cause. If you're not a cartoonist, but want to help, there is a button there which you can press to donate money.

For the theme of the book, cartoonists are invited to use the Cul de Sac characters as they will in their own artwork, interpreting them freely. My contribution appears above.

Me and Wii (part five: Flying disembodied Panda Heads)

Part freakin' FIVE? I agree, this is taking things a little far, and I promise to move on in the next post. Just hang in a bit longer while I wrap things up. The motivation for this series is serious. There have been many recent articles on how great the Wii is for people with Parkinson's Disease. Check out my favorite, courtesy of the British tab The Sun Banker stopped Parkinson's Disease by playing on Wii (thanks, Jo). This article touted the Wii's miraculous healing powers as being just short of those of the deceased Pope John Paul II, who is inching toward canonization thanks to his alleged miraculous cure of a nun supposed to have Parkinson's. No word yet whether there was a Wii involved.

Aside from the hype, why care about the Wii? First, many people with Parkinson's are unable or unwilling to leave the house for exercise. The Wii allows one to exercise at home, and in case you didn't hear me the first three (thousand) times, exercise is critical to managing PD. Second, one of the categories of skill the Wii tries to work is balance. Balance is a big area of concern to those of us who have PD. It is also one of the more intractable sides of the disorder. When I ask experts about what we can do maintain balance, there is little they can offer. The most practical advice came from a neurologist who advised honing your balance skills before falling becomes a problem. His idea is that if you "overcompensate" up front in the balance area you will have a longer glide-path down than if you neglect these skills before they are seriously menaced by PD.

This leads me to my two questions about the Wii. The first question: Is it interesting enough to keep a person exercising at home? The second: Can the Wii fortify balance in PD patients significantly over time? Alas, the answer to both these questions as tested unscientifically by one person with a huge stake in the answer will not be conclusive. One person is a pitifully small study sample and there are no control subjects. But with Parkinson's so much that is unknown that those of us afflicted must play our hunches as much as we responsibly can. With that in mind, this series will continue. But not until I get a significant amount of time under my belt with the thing so that I can render, perhaps, a little judgment on those questions.

In the space of a month, what have I learned about the Wii? There are a great variety of activities. This bodes well for prospects of continuing to exercise without being derailed by boredom. The experience can have a striking resemblance to reality. Ironically this is especially vivid when something surreal is happening, like getting struck in the face by a flying, disembodied Panda head. And one can genuinely work up a real sweat exercising with imaginary companions. There are certainly aspects of the Wii that are off-putting. Call me oversensitive, but I find garish color and cloying graphics well, garish and cloying. But so far, on balance the machine is ambitious and successful as one part of my exercise routine.

Jim Kerr and the Amazing Flying APDSG

Anchorage Juggler Jim Kerr visited our support group with tips on balance and stretching. One tip we all agreed to immediately: Avoid stilt walking. We put this into practice right away and not one of us had been on stilts since. Thanks, Jim!

Me and Wii (part four)

(Want to start with part one? It's right here.)

I should have seen it coming. The warnings were in plain sight, and I thought I was being careful. Still, I wasn't prepared, and Wii treachery took me by surprise when it struck with brazen impunity.

So what happened? Well, there I was, running in place in our living room, enjoying a fine view of the virtual scenery as it rolled past, along with the friendly attention of the animated joggers, strollers and sundry passers-by, and marveling at the fact that none of the animated dogs running free in this best-of-all-possible-worlds ever soiled the candy-colored landscape.

The Wii was annoying me by harping on how I was not maintaining a steady pace. I was actually having a borderline "off" period, my meds flickering, and at times my legs would refuse to pick my feet up from the floor. When my feet stuck to the floor I would resort to a pitiful hopping motion to fool the sensor into thinking I was running.

Then the meds kicked in and I picked up the pace. The Wii was not pleased. "you're going too fast!" it warned, assuming its "Hal 2001" persona. "Yeah, and you're playing insipid music and projecting cheesy graphics, but do I criticize you?" I thought to myself, (And, for those of you objecting out there that I am criticizing the Wii right now in this very post, hush! Whose side are you on?)

That's when it happened. Just to show which of us was the boss hog of this house, I upped the "speed" and my avatar sprinted across the screen for the finish line. And the Wii tripped him!

Incredulous, I stared at him/me sprawled on the path. The other figures in the area all ignored the crumpled form, obviously afraid of incurring the wrath of the Wii and suffering a similar fate. Indignation replaced shock and I jogged the final steps to the finish. Maybe there's more Sadistic Gym Coach With a Beer Gut and Precambrian Sense of Humor in the Wii than I thought.

Want to Help make an Inspirational Documentary About A Parkinson's Patient?

The movie trailer above is for an unfinished documentary about a South Dakota man who has advanced Parkinson's Disease. He still rides his bike (a sleek three-wheel recumbent) as he commutes to his bakery. Now he plans a ride 300 miles across South Dakota to inspire others with PD, and without it.

The documentary makers are raising money through Kickstarter. The filmmaker, Andrew Rubin recently wrote me to say "The film is endorsed and working with the National Parkinson Foundation, the Davis Phinney Foundation, LSVT Global, and other organizations. Our Executive Producer Stephen Nemeth has produced a vast range of socially conscious films such as Academy Award nominated War/Dance, Fuel, Flow and more. Finally, we are fiscally sponsored by the International Documentary Association a 501(c)(3) arts organization. "

If all this seems bona fide to you, and you would like to help get the film finished, click here to learn more.

Me and Wii (part three)

Now we're getting somewhere. I finally worked up a sweat with my machine. Who would have guessed that Hula Hooping was so aerobic? Or so maddening. Having PD really brings out the bumps and the grind of the old bump-and-grind. What looks so easy to do is mysteriously difficult for me. And seriously addictive. I went for 45 minutes, by the end of which I was panting and sweating.

Those 45 minutes were logged desperately attempting to keep the damn hoop from trickling out of momentum and spiraling down to my ankles, whereupon my avatar (the figure representing me onscreen) would look a mite sheepish and affect an unfazed attitude while a sign flashed "Failed... Failed... Failed". Ouch.

The Wii seems to have a split personality. The machine has several ways it tries to make nice. A recurring figure as you go through the various menus and activities is an animated version of the balance board that is obsequious and eager as a puppy, all quivers and goo-goo eyes. And as you struggle with activities helpful tips appear onscreen "The trick is to swing your hips in a neat, wide circle" Then out of nowhere, Dr. Jekyll morphs into Mr. Hyde. The machine turns around and brutally labels you a failure for not being able to magically keep an imaginary hoop of plastic out of the clutches of imaginary gravity. One expects to look down suddenly to find the obsequious imaginary balance board having an imaginary go at one's imaginary leg.

I'm beginning to feel a little like John Henry, the steel drivin' railroad man, competing with the steam drill with his human dignity on the line. How about it, Wii? Why not offer spike driving as an aerobic choice? Hammer's gonna be the death of me, Lord, Lord, Hammer's gonna be the death of me.

(Looking for part one? It's right here. And part two? That's here.)

Me and Wii (part two)

(Want to read part one first? find it here.) Undaunted by my first round of insults and humiliation, I returned to my Wii for more fitness fun. Chastened and a bit guarded as a result of my first encounter, I turned it on and prepared to work up a sweat. Things got off on the wrong foot when it noted that I hadn't been using it for a day or so, leaving the unspoken accusation that I was less than serious about my desire to reach the goal we so painstakingly agreed on during my first session. There being no way of registering excuses on the machine, I couldn't protest that I had in fact been working out on my trusty and discreet elliptical trainer. There was no way to disabuse the Wii of the notion that I had been slacking.

Anxious to prove how eager I am to do better, I attempted to cut to the chase and exercise. Once again I was sidetracked from this simple goal by the machine. It now wanted me to pick a personal trainer. I had my choice of bland young male virtual trainer or bland young female virtuall trainer. Sadly, sadistic gym coach with a beer gut and Precambrian sense of humor was not one of the options. Ah well, there are parts of my youth I'd just as soon not recapture. I picked the bland young man and selected Yoga for the activity.

I did some elementary poses, the machine assuring me from time to time that I was doing well. But instead of achieving inner peace, I attained only inner peace's evil twin, inner boredom. So I swapped in the disc with the winter games on it and ran a few dozen trips down the giant slalom course. After numerous high-speed misadventures which in the real world would have left me maimed or worse, I believe I found one way that the world of virtual exercise surpasses the real one: Virtual pain is preferable to real pain.

Deprived of the ability to inflict physical pain, the ever-resourceful Wii resorted again to mental cruelty. My avatar, the figure which represented me on the screen, would make one of our typically disastrous runs, missing gates and straying into the fence line (the death count among innocent bystanders would have been impressive in a more violence-oriented game where senseless killing is rewarded with points. Unfortunately, there is no "Wii Ski-Halo, Alpine Mayhem", at which I would excel). At the end of the run, after crossing the finish line in disgrace, my avatar would pump its little virtual fists and carry on as if it had just established a new world's record. Was this merely clueless or devastatingly sarcastic? Whichever, it was certainly embarrassing.

Let's be charitable. There is another possibility. Perhaps it was thanking the Silicon Gods that, given my skill level, it wasn't being loaded into a tiny cartoon ambulance and rushed off to a virtual hospital where it would languish for months on virtual life support until its stricken family agreed it was never going to wake up from its electronic coma, and pulled the plug. Feeling merciful, I didn't pull the plug, but I did turn it off.

Support Group Update for January

Hello friends, Yes it's time for the January PD update. It's a bold new year and your support group motto for 2011 is "No Fear!" Our next meeting will be January 15. Our guest will be juggler Jim Kerr, who will provide us with tips on balance. That's Jim in the clip above juggling fire, and the background music is also Jim, conjuring up musical fire. You can see that this will be a meeting you won't want to miss!


On January 10 there will be a telehealth presentation at Providence hospital called "Take charge of your medications". Look for this event in room 2401 at 1:00 p.m.

Best to each of you in 2011,

Pete