Tuesday, February 17, 2009

Cracking My Squash*, the DBS caper



I have a date with Deep Brain Stimulation at the end of June in San Francisco. Like a bank heist or Louvre robbery, the DBS operation requires a courageous, highly skilled, and disciplined group of specialized experts. Their mission is to to overcome the defenses of their target with just the right calibration of force and guile.

The difference here is that instead of a bank vault, they are going to bore a hole in my skull, breach the blood/brain barrier and drive a hair-thin electrical wire into a wild and remote part of my head. For some reason, running an electrical charge into just the right part of the deep brain has been found to be tremendously effective for some people in alleviating many symptoms of Parkinson's Disease. My status as PD patient makes me both part of the team, and the obstacle to be overcome.

In the traditional heist movie there is always a scene in which the mastermind assembles his handpicked experts for the briefing on the bold and ingenious blueprint for the task. Here's how my part in the drama goes:

"Listen up, here's the plan. Pete, your job is simple but critical. Just lie still for around four hours. To help you do this, a couple of minions will secure a surprisingly comfy stainless steel "halo" to your skull. Then a highly trained team member will guide the wire into the target zone deep within your brai..."

(Deep thud as I faint to the floor)

"Dammit Hugo, slap him back to consciousness, there's a good lad."

(Crowd in theater cheers as Hugo slaps me awake)

After they revive me they remind me that I need to be awake during the operation so they can assess the accuracy of the placement of the wire. For instance, if my surgeon asks me to wiggle my hand and instead I deliver a swift kick to Hugo, they know that there is some fine tuning to do.

The 14 authors of the script provide me with scrappy, snappy lines to deliver from my helpless immobilized position. Stuff like "Hey, who left my skull open? I'm getting a draft on my Subthalamic Nucleus". The authors prove I am unfazed that SOMEONE IS GUIDING A WIRE INTO MY BRAIN by having me whistle "Fixing a Hole" by the Beatles until my surgeon, a bead of sweat trickling into his eye, finally snaps and calls for a #7 surgical clamp which, with his sensitive surgeon's hands, he compassionately applies to my upper and lower lips.

(Theater crowd erupts again in a frenzy of applause)

Actually, I'm not unduly anxious about rattling these people. Consider: A day at work for them often involves a look at a naked, living brain, its gray, wrinkly coating glistening in the bright light of the operating room. These are tough customers one and all. It will be a big job to mess with their minds while they are messing with mine.

At the end of the scene in which the so-crazy-it-just-might-work plan is explained, the mastermind always asks for questions. Naturally, I have one. "In the case of hiccups, can the entire apparatus be inverted so I can cure them by drinking a glass of water upside down? And, if yes, is there any danger of my brain slipping out of the new holes and smacking to the floor with a gooey splattering sound?"

"No." The mastermind replies, and then orders Hugo to slap me back to unconsciousness.

(Theater goes nuts)

(Producers, sensing audience approval decide to end here. Fade to black, roll credits, as Vampire Weekend plays a brand-new-special-for-this-credit-sequence version of "Fixing a Hole".

*To "Crack a squash" was slang my father would use when he assisted at operations that involved cutting through someone's skull.

Wednesday, February 11, 2009

Our February 21 Meeting: Plan A and plan B UPDATED!

Breaking news from Caregiver extraordinaire Betty Berry. Betty will be available this meeting for a separate session for caregivers. These mini-meetings are highly recommended for partners of people with Parkinson's Disease. A great chance to pick the brain of someone who saw her husband through the entire course of his disease and can offer seasoned advice and comfort to those of you who face this difficult passage. If that isn't reason enough, I might also mention that Betty has been known to bring homemade cookies as well..

What else is up for our February 21 meeting? Glad you asked. We are working on setting up a visit from new neurologist on the Block Dr. Frank Ellenson. Dr. Ellenson is ramping up an ambitious practice at Providence, which will include regular visits from motion disorder specialist Dr. Alec Glass. This will be an excellent chance to hear about how this will work, and what it means for those of us who either cannot or do not want to travel thousands of miles for care from a doctor with extensive Parkinson's Disease training.

If this falls through, we go to plan"B", which is to watch the comedy classic "All of Me" imagining it it as a metaphorical look at PD and how to live with it. There are uncanny similarities between the predicament of the hero and things we face as we struggle to control our own bodies. Not to mention that it's hilarious, and I don't know anyone out there who doesn't need a good augh. As I've said before, Parkinson's takes too much from us as it is, I'm not giving up my sense of humor!

Monday, February 9, 2009

Sleep and Parkinson's Disease: Patient Education Event coming to Anchorage

Hey everybody, what's your favorite topic? If you said "Parkinson's Disease, of course" then snap to attention. Those of you who said "Sleep" should snap to attention as well. If you actually were asleep, sorry I woke you, but now that you're up you may as well mark the event below on your calendar.

This is another seminar sponsored by our friends at the APDA. Our thanks to them! Oh, and I just remembered, the most recent edition of The Fairly Exciting Adventures of Flash Molasses involves this very topic. You can find the post by clicking here.


Dear Friends of the APDA

Please be our guest on Thursday, March 26th, 2009 at Alaska Regional Hosptial for an Educational Patient Program with

DR ALIDA GRIFFITH
MOVEMENT DISORDER SPECIALIST
BOOTH GARDNER PARKINSON DISEASE CENTER, KIRKLAND WA

"SLEEP ISSUES PERTAINING TO PARKINSON'S DISEASE"

11 am - 1.30 pm

Lunch will be provided and there is no charge for this event

Reservations requried
Please RSVP to;
evedavis@gmail.com or 425-443-8269
Sincerely,

Evie
Evelynne Davis