Dr Demi-God, paging Dr. Demi-God... Helloooooo?...

Here is a refreshing look at the Doctor/patient relationship. (Hat tip to Bill Bell for flagging this.) I love the bit with the forklift. As much as we might wish that someone with the knowledge and power could lay a hand on our forehead and cast out our PD demon, it doesn't work that way. With this disease you can't afford not to step up and help out.

As people with Parkinson's we have to be unusually involved with our care. This is true because of three big factors. First, Parkinson's manifests differently in each person to such a degree that it can be difficult to standardize care. You have to be the authority on you. Second, if you haven't got access to a movement-disorder trained doctor you must take up as much of the information slack as you can. The unfair but unavoidable truth is that a general practice neurologist doesn't have the ability to dive as deeply as possible into the complexity that is Parkinson's when patients with everything from MS to migraines also need care. Third, let's face it, in our system we ration time with your doctor. You and your doc share the examining room with an invisible bean counter who is muttering in the background and pressuring your doctor to move on to the next patient. Even if your doctor is a demi-god, (hint: none are) This doesn't leave much time to pick their brain. So you get to be part of their brain instead.

And here is where something useful can happen. You demonstrate to your doctor that you have a good working knowledge of your disease as well as ideas about how care might go forward. This allows your doctor will see you more as partner in your care, someone to practice medicine with, not someone they practice medicine on.

If you are interested in finding information, where do you go? Two words: Support group. What? You want more than two words? Well you could always check out this post from a short while back.

Pete's Parkinson's Portraits- Francisco Franco

Like Mao and Hitler, Franco was a brutal dictator of the Twentieth Century. Like them, he suffered from Parkinson's Disease. Franco managed to hang on from the thirties to the mid seventies, miring Spain in his iron grip. "Our regime is based on bayonets and blood, not on hypocritical elections" he boasted, backing it up with his feared police the Guardia Civil.

Franco became the leader of Spain after defeating the communists and anarchists in the Spanish Civil War. This war was seen by many at the time as a a critical battle in the world-wide struggle against Facism, prefiguring WWII. Because of this idealistic foreigners like Hemingway, George Orwell and Arthur Koestler went to Spain to fight on behalf of the anti-facists. Each came out of the struggle marked for the rest of their lives by the collapse of the forces allied against Franco.

Franco continues to haunt the image of Spain years after his death. Guillermo Del Toro's searing recent film "Pan's Labyrinth" was inspired by the post-war reign of Franco, who maintained power until his death in 1975.

After 16 Years Incomunicado, "Calvin and Hobbes" Artist Bill Watterson Emerges to Help in the Effort to Stop Parkinson's Diseas

(ABOVE) Portrait of "Cul de Sac" character Petey Otterloop, by Bill Watterson

Here is one more reason to revere Bill Watterson, creator of "Calvin and Hobbes". The reclusive cartoonist has contributed the first piece of art that the general public has seen from him in 16 years to the Team Cul de Sac effort to help the MJ Fox foundation in its efforts to cure Parkinson's Disease.

You can learn more from a Washington Post blogger Michael Cavna Here, or check out the Team Cul de Sac blog here.

Many thanks to Bill Watterson, a guy who knows when and how to break a long silence!

Upcoming PD Events For Anchorage

Hi folks,
Here's your Parkinson's breaking news bulletin for Anchorage and environs. Today (Monday the 11th) there will be a telehealth presentation at Providence hospital called "An overview of treatment options for PD". Look for this event in room 2401 at 1:00 p.m. That will be followed this Saturday by a support group meeting at our usual plush digs at the Anchorage Pioneer home. We are still hoping to nail down our Tai Chi speaker for that, but I do have a backup plan should that, if you'll pardon the expression, fall through.

See you at some or all of these fab PD events

Can you Keep a Secret? It's Parkinson's Disease Awareness Month

Pssssst... keep it under your hat. Don't tell a soul. This is your-eyes-only stuff on a strictly need to know basis, and yes, I'll have to kill you after I tell you. Can you handle the truth? It is, believe it or not, Parkinson's Awareness Month.

Once again April, in all her cruelty, demands that an oblivious world divert its attention from the disaster in Japan, War #3 in Libya, and even the lovely locks of Justin Beiber to (ahem) us.

April is the time we are supposed to raise our soft slurred voices in a cry for attention. A cry to which the World will likely reply "What? Couldn't catch that. Come again?" And who can blame it?

With the thousands of worthy causes out there demanding attention through such tired devices as "awareness" months, how do we get the world to focus on our particular little tragedy? That is the question of the moment.

But is it the right question? Isn't a better question why should anyone care? Given all the other sad, desperate conditions and predicaments that humanity faces, what can and should we do to make it worth the World's time to devote its distracted mind and heart to us?

Let's begin convincing people PD matters by ditching Parkinson's Awareness Month. Reserving a month for PD awareness leaves eleven months for Parkinson's obliviousness. We need to let people know they should care about Parkinson's Disease year-round. How? For a start, if you are hiding your PD, come out of the closet and let people know. This is especially important for young-onset patients. I have met good doctors that couldn't believe I had PD because I'm "Too young". An invisible problem is not going to rise to the top of anyone's to-do list. You must allow people to see your predicament before they can feel compelled to confront it. If you're not part of the problem, you're not part of the solution.

So you boldly step out of the closet. That's a start. What next? You have to show you care. If you can't be bothered to resist Parkinson's Disease, why should anyone with a less obvious stake in the matter be bothered? If you need some ideas about how to do this, no worries, here are a few. Start a blog, volunteer as a PD research subject, join a support group, get involved in a fund raising event. With a little enterprise on your part every month will become Parkinson's awareness month. People will be eager to cure it just to make you go away.

Learn what you can do to take better care of yourself. Whether the Lord helps those that help themselves or not, I do not know. But I am convinced that people are more apt to help out when they see you are trying to make your situation better rather than shrugging your shoulders and waiting for the next blow. Get speech therapy, work those stiff and sore muscles with regular exercise. Eat right. Manage your medication well. Do your research and learn all you can about how you can function more effectively in spite of what this disease will do to drag you under.

Whew, that'll easily fill up a year. A person might be forgiven for wondering if there is no simpler way to inspire interest and compassion from a stressed out over-busy world. Actually there is. But it would be wrong to wish PD on Justin Bieber.

Another Walt Whitman Moment ("I celebrate and sing myself" yet again)

Hang on to your gag reflexes while the Off and On Promotions Department issues the following press release...

OK, let's get this over with quickly, minimizing our mutual discomfort at naked, opportunistic self promotion.

TheAlaskaPressClubhashonoredtheblogOffandOnwithfirstplaceinthecommentaryblogcategoryforworkdonein2010.ThisisabigdealforPeterwhoissoexcitedthatheisevennowcomposingaselfaggrandizingpressreleasewhichhewillsoonposttotheaforementionedblog.

Whew, thank heavens that's done. The management here at Off and On appreciates your forbearance in this matter, and expects to refrain from this sort of behavior for at least a year, and probably longer. Thankyou.

Smiley Crisis

Smiley faces may look innocent, even bland. Don't let the little bastards fool you. That innocuous icon can plunge an unwary soul into startling existential awareness, ripping off the band-aid of denial with a smart sting. One moment you are methodically filling out an online form, the next you are confronted with the unwelcome shock that your relation to reality has significantly shifted without you noticing.

Here's what happened. I have been using the online tool I mentioned a few posts back to track my medications against my on-off cycle. I had run through the process several times and it was becoming familiar. I came to the final step where the program asks you to give a general snapshot of your "wellness" by clicking one of three icons. The choices are a smiley face (feeling good), a non-committal neutral face (feeling average), or a frownie face (feeling bad).

I was about to pick the smiley face when it hit me. Whoa, not so (relatively) fast Parkie boy. You feel good compared to what? The fact is that with PD, I am more likely to aspirate saliva and erupt in a coughing spasm, more apt to have difficulty speaking and being heard, subject to weird involuntary motions if over medicated, and unable to move normally if too far between doses. Yet at that moment, despite whatever symptom I was experiencing, I honestly thought I felt better than average.

That's when I realized how far I had come in incorporating my illness into my self. A different, healthy me who was experiencing the symptoms that I felt would have chosen the frownie face. That is, I would have chosen Mr. Frownie after a quick search for the sheer primordial panic face. But the person that I am, having lived now for more than nine years with various symptoms, has evolved a new scale for quality of life that locates "good" where it's safe to say most healthy people would find the opposite.

Humans are adapters. That's why we're found everywhere on Earth in all seasons, from Point Barrow in January to the Sahara in August. Where adaptation calls for moving we become nomads. Thoreau wrote that he had traveled extensively in Concorde. I've come farther than I ever suspected in Parkinson's Disease.

PD Pop Quiz (and a question for support group leaders)

To misquote David Bromberg "there I was again right where I Knew I shouldn't be". It was hours to meeting time and thanks to laziness I didn't have any plan for the support group activity. This left me with two options. I could stand up in front of the members and tell them straight from the shoulder that once again Generalissimo Pedro had dropped the ball, trying to keep a brave face while they tore my stripes off. We'll call this option 1. Option 2 was to improvise something at the last minute and try to make it look like I had planned it all along. The human heart being what it is, I opted for #2. This is called turning a problem into an opportunity. Although the two look much alike at this stage.

Really it's turning the problem into an opportunity to turn the problem into an opportunity. Creating the opportunity is now the problem. Somehow in that pregnant moment when irresistible force (laziness) smacks into immovable object (meeting time) out of the chaos springs an idea: The PD Pop Quiz! A little brainstorming on content and presto- instant meeting. Here it is:

PETE'S PD POP QUIZ (Answers at the end of this post)

Three early signs of Parkinson’s Disease Are A: Slowness B: Dementia C: Loss of sense of smell D: Tremor predominantly on one side E: Hair loss

Which symptom does not respond to treatment with sinemit? A: Tremor B: Loss of balance C: Slowness and stiffness

True or false: PD is contagious ( ) T ( ) F

True or false: The most noticeable effects of PD are caused by the loss of the neurotransmitter seratonin in the brain ( ) T ( ) F

An rare side effect of some PD medications is A: Offensive body odor B: Sex or gambling addiction C: Flatulence

True or false: Voice therapy is useless in PD ( ) T ( ) F

True or false : If I have PD, I should quit exercising ( ) T ( ) F

The tiny handwriting of people with PD is called_____________________

Scientists now believe that Parkinson’s is underway in the body (A) 6 months (B) 1 Year (C) more than a decade before it is commonly diagnosed.

True or false: PD is a disease of the old ( ) T ( ) F

A diagnosis of PD is a death sentence ( ) T ( ) F

The part of the brain where cells are dramatically lost in PD is called the
A : Cortex B: Hippocampus C: Substantia Nigra

DBS is the acronym for ___________________________

True or false: PD is curable with present medication ( ) T ( ) F

True or False: PD is treatable ( ) T ( ) F

Extra credit: PD is better than A: A sharp stick in the eye B: A sharp stick in the brain C: A dull stick in the eye

So why am I bothering you with this beyond showing off? Well, because the stupid thing made for a surprisingly good meeting. People seemed to enjoy the challenge of the test and, more important, when went we went through and graded it, each item provided a jumping-off spot for questions and discussion. By the time we got through it, most of our meeting time was shot.

So support group leaders, you are welcome to use it, Clip'n'Save for the next time you are caught without a topic. It's my gift to you. And it comes with a question: what's your suggestion for fruitful support group sessions beyond booking some excellent speaker? What have you done that gets your group members talking and sharing? Lazy as ever, I await your replies, please post to the comments section or by email to dunlapshohl(at)Gmail(dot)com.



Oh yeah, the answers:


Three early signs of Parkinson’s Disease Are A: Slowness C: Loss of sense of smell D: Tremor predominantly on one side

Which symptom does not respond to treatment with sinemit? B: Loss of balance

True or false: PD is contagious ( ) F

True or false: The most noticeable effects of PD are caused by the loss of the neurotransmitter seratonin in the brain ( ) F

An rare side effect of some PD medications is B: Sex or gambling addiction

True or false: Voice therapy is useless in PD ( ) F

True or false : If I have PD, I should quit exercising ( ) F

The tiny handwriting of people with PD is called Micrographia

Scientists now believe that Parkinson’s is underway in the body (C) more than a decade before it is commonly diagnosed.

True or false: PD is a disease of the old ( ) F

A diagnosis of PD is a death sentence ( ) F

The part of the brain where cells are dramatically lost in PD is called the C: Substantia Nigra

DBS is the acronym for Deep Brain Stimulation

True or false: PD is curable with present medication ( ) F

True or False: PD is treatable ( ) T

Extra credit: PD is better than A: A sharp stick in the eye B: A sharp stick in the brain C: A dull stick in the eye

Parkison's Prognosications for the Southcentral Alaska Area

It's Parkinson's prognostication time again, in which your humble seer looks boldly into the future and divines what awaits those of us of the Parkie persuasion for the month of March. I see... a darkened room... a room filled with people staring intently at a screen... Yes! it's another Telehealth conference at the new oncology wing of Providence Hospital, room 2401 this Monday, the 14th of March at 1:00. The topic this go-round is PD and sexuality. The presenter is Kristoffer Rhoads, PhD, neuropsychologist For more info, call: 1-877-980-7500

Looking even farther into the mists of time, I see the fuzzy outline of a support group meeting coming up this Saturday, the 19th of March. I hope the topic for this meeting will be Tai Chi for PD, but have yet to hear back from our prospective guest. If the speaker falls through, we'll enjoy a presentation on... er, something else...
The mists of time are becoming opaque... my sight fails... that appears to be all that I have for you. I look forward to seeing you at these events. Until then, festinate forward!

Team Cul de Sac update: Cartoonists Begin Sending Artwork

Drawings from cartoonists are starting to come in to the cartoonist's campaign against Parkinson's Disease. The plan is to combine the drawings into a book to raise money for the Michael J. Fox Foundation. The effort is led by the indefatigable Chris Sparks, who was motivated by the PD diagnosis of his friend, Richard Thompson. Thompson is the creator of Cul de Sac, one of the brightest lights in the recent history of newspaper comics. Contributing artists are invited to use the characters from the strip in their contributions for the book. At left is a picture of one of the leading characters, Alice, as drawn by Thompson. (You can see my donation here) Preview the recently contributed art at the Team Cul de Sac blog.