Special Meeting May13: Parkinson's and Dementia

Hello friends, mark your calendars for a special meting with Dr. Jim Leverenz on Wednesday, May 13th, noon at the Anchorage Senior Center. Dr. Leverenz is especially interested in the effects of Parkinson's Disease on thinking ability, and has broad knowledge of this topic. He plans a short presentation (Under 30 min.) to be followed by questions and discussion with the audience. Food will be provided.

A Health Care Jeremiad (part 3)

How sick is our health care system? Here's a clue. We name bad things like diseases after the good people who treat and study them. Parkinson's is just one example. It's named after Dr. James Parkinson, who described it centuries ago.

Good things, like treatments and cures, we name after... what? I'll put it like this: Ever been cured by a shot of Alexander Fleming? Nope. He made the discovery that led to turning mold into a miracle, the first anti-biotic. But the miracle, penicillin, got named after the mold.

This would be great if our plan is to give mold incentive to make medical breakthroughs. And given the other health care absurdities we face in America, it wouldn't be too far-fetched to believe it is our strategy.

But c'mon people! Surely there is a better way to align rewards with the behavior we all agree we want. It makes no sense to name bad things for people who are doing great work, and to give valuable recognition to things like mold, who frankly, don't give a flying fungus about what we think.

Let's divert our present approach to naming diseases and treatments to a path more likely to mean better health for all of us. Here's how to do it, and apply a little correction to Wall Street at the same time. It's a little complicated, but what isn't these days? Bear with me.

We're currently bailing out various toxic businesses. We seem to have no way to avoid rewarding these greedy incompetent failures. But there is "opportunity cost" for all of us. Once you commit resources to one cause, saving our economy, you cannot use it for another worthy cause, like saving our health. So let's get creative. We all know there is value in a name. That's why businesses buy the rights to name stadiums after themselves. They even have a term for the value they reap from it: Good will. Let's apply this time-tested and well understood principle to medicine. No, I'm not suggesting that we auction of the names of big-brand diseases to these internal parasites of our economy. Obviously they're not going to buy them.

But here's the deal. If they want to take our bail-out money we get to rename them after diseases. We'll give them a shot at changing back to their old name down the road at an auction. All proceeds will go to defray health care costs and expand medical research. Thus A.I.G might become Irritable Bowel Syndrome (I.B.S.) until they pony up for something they find more becoming.

Matching a company to a disease will pose some challenges. The number of banks out there with predatory credit card practices will make it tough to decide who gets to be Swine Flu. But don't worry. There are plenty of diseases to go around.

One of the beauties of this plan is the numerous beneficial side effects. Think how much more fun following business news will be when the headlines say things like "Analysts scratching their heads over Psorisis sell-off", and "Earnings report beats down Chronic Anxiety", or my favorite:"Parkinson's slow to react to market changes"

Furthermore these names would serve as a reminder of company history. Memory of their misdeeds will fade over time, but we'll always be suspicious of a company branded say, "Kleptomania Inc."

And let's not forget that this is the kind of reform that will do more than contribute to advances in health in the future. It will make us feel better today. And in the health care field, isn't feeling better the very definition of successful treatment?

Hey Alaska, The Parkinson's specialist will see you now

The wait is over! Alaskans with Parkinson's Disease can now arrange to be seen by a specialist in treatment of this complex condition.

Dr. Alec Glass will soon begin his quarterly visits to Anchorage to provide care to Alaskans who suffer from Parkinson's Disease. His first round here will be the weekend of the 22-24th of May.

Dr. Glass is a fellowship-trained specialist in movement disorders. He practices at the University of California, San Francisco, and with the VA in San Francisco. You can learn more about him here.

To make an appointment to see Dr. Glass, contact


Alaska Neurology Center

3841 Piper Street Suite T345

Anchorage AK 99508

907.565.6000 Phone

1.866.977.2562 Toll Free/Fax

Please help spread the word among people you know who could benefit from this opportunity to better manage the PD beast. This is an excellent chance to move toward better quality of life without having to pass through Seattle or Portland to get there.
Gargantuan thanks to all involved in making this happen, especially Joanne Power, and Dr. Glass.

Festinate forward!

Peter

Dysko Boy, or, Body English is My Second Language

Oh man! I just had an unexpected encounter with reality. I got a note about a week ago from my friend Pat that video of my talk to his journalism students is available on the Web. My present motto is "No Fear," so I pulled it up.

The video loaded, and suddenly there was this guy on the screen writhing around and jabbering at light speed. A herky-jerky whirligig who was disco dancing while a colony of fire ants made its way up his pants. That whirligig was me! Those were my pants full of fire ants! I was amazed.

It was like seeing me play either end of the table against myself in some white-hot, solo ping pong match. Or maybe conducting the Amphetamine Philharmonic Orchestra in a 30 minute rendition of Wagner's entire Ring cycle. Or a bowler putting the entire Oxford Dictionary of Body English on a ball in the time it takes it to roll to the far end of the lane.

It was tiring just to watch. Fortunately the image is about the size of a match book. Anything larger would be an aerobic workout for the eyeballs that would leave the viewer panting and soaked with sweat in their chair.

One of the reasons I was so struck by the sight was that I had no clue I was this consumed with excess motion (called "dyskinesia" by the cognoscenti.) It's not caused directly by the disease, but instead by the brain's inability to process the amount of medication that I must take to avoid extended times when I can barely move.

It's a trade-off: Better to have extra movement than not enough. But it does require great concentration when trying to make a line go where you want it to go in a drawing. Often I spend as much time Dysko Dancing while attempting to draw as I do actually drawing.

But really! I had no idea I was as hyper as I appear on the video.

All I can say is it looks much more dramatic from outside. At least that's all I can say in written English. In Body English, you can't shut me up until the meds wear off.

(And, oh, all right. If you must, you can view it here.)

A Health Care Jeremiad (Second in a series)

Our health care system, particularly the way we fund research, reminds me of the old Tom Lehrer line about his doctor friend who specialized in "diseases of the rich". And if that joke is funny about just one doctor, think about how the hilarity compounds when it applies to an entire system.

Research, care, and resources directed at a particular disease are driven by concern. Concern is driven by awareness. Awareness is driven by the amount of energy and volume those affected by the problem can muster. Anybody see how the deck is stacked against Parkinson's sufferers here?

But just to make things more interesting, there is the effect of the celebrity wild card. If somebody famous and widely liked, an actor, an athlete, gets the disease... BING! BING! BING!... suddenly they're testifying before committees and Congress finds a way to wrap money for the problem into the next passing bill. Even better, a member of Congress should get sick. Then their peers can really relate, and they'll cry while they pass it. So you're set. For a year. Repeat until cured.

This is weird enough at the policy level but it gets downright warped at the level of the individual. This is the level where I'm shocked by decent caring people who say things like "It's lucky that Michael J Fox got PD. Now we get attention and funding." But why should that be shocking when I've privately thought the same thing?

Ignoble, Selfish. Obviously wrong on so many levels. And only human.

So must we add shame as another effect of Parkinson's Disease? Here's a way out. We should rephrase the thought to accurately express what we really mean. People renowned and obscure get Parkinson's all the time. None of us is happy about that. But not all of them react the same way. Some retreat, and lie low. Who can blame them? Others, like Fox, or Muhammad Ali, or thousands of lesser-known but equally courageous people with ravaging conditions go forth to meet their adversary with all the intelligence and energy they can muster. It's not lucky for the rest of us that they got our disease. It's lucky they are doing something about it.

And, not today, not tomorrow, but surely over time, their effort and courage will bear fruit. And that is something we should feel grateful for. That is something we may celebrate.

(Ahem) Supreme Leader Screws up AGAIN. Announcing a change to our Saturday 18th of April Meeting

Once again friends, I have failed you. One has to ask, "Peter, is this so damn hard?" Sadly, the answer for me appears to be "Duh!" Once again I have made a mockery of your trust, the faith that you so bravely placed in me, and that I have once again abused.


My only consolation is that this has happened with such dreary predictability that I rather doubt that any of you took it seriously when I blithely announced that the fabulous Ann Ver Hoef, Speech Pathologist Extraordinaire would address our hearty band this Saturday. She will be away, and we will reschedule. We still expect Betty to lead a caregivers session, and I will have some adrenalin-fueled surprise topic ginned up for the rest of us by Saturday.

Abashed, abased, but consistent!

Peter

Upcoming Teleconference "Your PD Medications"

Hey Folks,

The next in the monthly series of interactive video conferences on Parkinson's Disease will be held at Providence Hospital in room 2390 (in the new wing.) The date is April 20th, the time 1:00Dr. Steve Setter will present a talk called "Your PD medications." You will be able to ask questions of Dr. Setter via two-way video link, so if there is something you need to know on this topic, take note. Here is a number for more information 1-877-980-7500.

Onward,

Peter

A Health Care Jeremiad (Part one)

"April is the cruelest month"
-T.S. Eliot

April is Parkinson's Disease Awareness Month. It is also Sexual Assault Awareness Month, Mathematics Awareness Month, Workplace Conflict Awareness Month, Irritable Bowel Syndrome Awareness Month, National Cancer Control Awareness Month, National Autism Awareness Month, STD Awareness Month, National Child Abuse Prevention Month, Tsunami Awareness Month, Counseling Awareness Month, Earthquake Awareness Month, and the list goes on. And what a list! As you look it over you will not be surprised to learn April is also Stress Awareness Month. To which I'd drink, except that it's also Alcohol Awareness Month.

Show of hands: How many of you out there actually knew that April was the month that you were supposed to be aware of

1. All of the above?

2. Three or more of the above?

3. Any one of the above?

As a guy who had to Google the phrase "April awareness month" to come up with everything but Parkinson's on this list, my hunch is most hands went up on 3. This suggests that dedicating a month to make people aware of something they do not particularly want to think about in the first place is not a winning strategy.

So how does a supplicant make their cause stand out from the throng? Whether it's a hearing room in Washington D.C. or a Board Room in San Jose, what you need is volume, and a champion with star power. Which is why so many of us appreciate Muhammad Ali and Michael J.Fox. Both have used charisma and strength of character to attract sympathy and money to the cause of ending Parkinson's Disease.

This is great for those of us who suffer from PD. I hope to benefit from it someday. But as health policy, it is pathetic. Rather than taking a systematic set of criteria that would rank research priority by, say, rate of disease in the general population, or rate of fatality, or cost to treat, we have a popularity contest. Jackpot if you share your malady with someone appealing on a scale grand enough to sway research dollars in the direction of your problem.

If this doesn't seem unfair to you, consider the inverse. What if you shared a health problem, maybe addiction to prescription pain pills, with someone despicable, say, a loudmouth thug from talk radio? And then suppose the powers that be decided to subtract from the budget for addiction research because of the antimagnetic personality of the high-profile pillhead? Why should a perfectly lovely person like you suffer because of your unwilling and random association with this jerk? And, to return to the original question, isn't it just as arbitrary to benefit from association with a worthy person like Ali?

Because of the nature of the disease, the Parkinson's field has struggled under this system in the past. Parkinson's research suffered for years precisely because the disease tends to turn its victims into quiet people who avoid the spotlight. People who avoid going out in public. Who are embarrassed by tremor. Who are tired of being accused of being drunk because of their poor balance and slurred speech. Lobbying under these conditions is a formidable and forbidding task

Scene: A brightly lit hearing room where a person with Parkinson's, their symptoms aggravated by stress, attempts to make their case. "Can those of you in back hear me? No? Those in front? I'll try to slur directly into the microphone" It's hard to be the squeaky wheel when you can't even audibly squeak.

There are a dizzying array of interacting factors in the complex set of questions about allocation of research priorities. It is hellishly difficult to know how best to foster the greatest good in choosing among worthy areas. It may be so complicated that it's impossible to avoid a decision that is not arbitrary at some level. So maybe this is the best we can do. But have we even asked ourselves that question?

Trying to choose between diseases is partly a self-imposed predicament. We could skirt these choices by deciding as a society to devote more to health research in general. There is much we could do that would make us all proud of if we made the pie bigger.

Oh. I forgot. We gave all the pie to the wizards of banking who crashed our economy by operating heavy financial equipment while intoxicated with greed. Don't these people read the warning labels?

I guess it will come back to haunt them when they get their Parkinson's or cancer diagnosis.

At which point they will join us in the system. I sure hope we've gotten it reformed by then. Because with research funding to some degree a popularity contest, they'll bring in enough unpopularity to set all of us back decades.

(Part one of a series.)