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.

UB the Brain Surgeon

As both an animator and a Deep Brain Stimulation surgery patient, my hat and bits of my scalp are off to Edheads for this interactive demonstration of how DBS is done.

This is not for the squeamish, but if you're not bothered by a little virtual blood you can pick up a virtual scalpel and scalp a virtual lawyer. Along the way, you'll get asked questions, "handle" high-tech equipment, and gain a better understanding of both DBS and why you weren't cut out for medical school. I was so enthralled I almost missed my scheduled meds.

This particular version of the operation is broken into different stages where parts of the operation are separated by days. Some doctors do all phases in one long operation, and correct me if I'm wrong, but I believe Dr. Philip Starr of UCSF has now managed to perform the operation without the necessity of waking the patient to check placement. But this is still pretty state of the art, and if you don't come away with a better general understanding of DBS, your tuition to medical school will be cheerfully refunded.