Tuesday, July 21, 2009

Science catching up to the Spandex Angel




Flashback: When I was first diagnosed with Parkinson's Disease, I had an encounter with the Spandex Angel. The angel appeared before me, resplendent in raiment of finest Spandex, vibrant with hues of a vividness not found in nature. The angel was both buff and ripped. Lo, its abs were like unto six packs, and its buns were of steel. And I was sore afraid. And stress did cause my Parkinson's symptoms to wax, and I did tremor with a vengeance. And the angel spake unto me, saying "Fear not, for though thou walk in the valley of PD, thou art not entirely helpless. Indeed thou hast a choice: Sit like unto a lump, inert and pathetic, and let this disease carry you down in an ever steepening spiral, or fight back against your insidious foe with exercise. This is thy choice: Move it or lose it!" Thus spake the Spandex Angel.

The wisdom of this apparition has proved reliable, and almost prophetic over time. While the angel offered no scientific proof of its message, much promising evidence of the benefit of exercise regularly crops up in new Parkinson's research. Here is a link to a report from ABC on the benefit of "forced exercise". What is "forced exercise"? Essentially it means pushing yourself to exercise at a sustained level that is higher than you would ordinarily maintain. In this case, pedaling a bike at a higher rate than the subject ordinarily would pedal. The video with the report has some spectacular footage of my friend Dr. Dave Heydrick, a neurologist with Parkinson's Disease. The video shows Dave completely off meds and with his Deep Brain Stimulator turned off before and after a vigorous ride on a tandem bike. In the before footage, his hand shakes like an aspen leaf in the wind. In the after footage, the tremor is undetectable. Check it out, then hit the gym (After consulting your doctor about what kind of exercise routine is right for you.)

Saturday, July 4, 2009

DBS Stream of Consciousness (Updated)




1.) Peter leads his handlers in a chorus of "I like New York in June."


Photos by Pam Dunlap-Shohl © 2009

June 30th, 5:30 a.m. Concrete gray San Francisco sky. Off my meds, mince to curb. Cram into cab with my handlers, Pam, Yvonne, and Wiley. Cabbie talkative, asks if we saw the gay pride parade "All those hairy asses." Pam won't let his scorn go unchallenged, "To each his own, I say" she replies. Myself, I think the parade missed a big opportunity by not having people in fezzes driving tiny cars around, but found it on the whole to have the same level of gravitas one expects at any parade. And it was certainly a good call to leave the military gear home. Don't ask, don't tell. We arrive at the hospital atop the hill, report to adult surgery and in walks Irish Annie, all business and brogue, she takes our information and when we tell her why we're there and who will do the honors, she is pleased "Ahh, she says, "The wonderful Dr. Starr" which is as good a way as any to kick off brain surgery.


2.) Be prepared for lots of paperwork

Just a few more forms to fill out before the drilling begins... The wonderful Dr. Starr offers yet another piece of paper, says "This one is in case you have any moral objection to a blood transfusion, should you need one." I reply that I have a moral objection to NOT having one, should I need it. "That would be my position." says Dr. Starr. Then, just because everybody makes mistakes sometimes, he produces a sterile sharpie marker and inscribes an "X" on either side of my temple to remind him where the drill goes in.


3.) X marks the spot, except the real spot is hidden by my full, luxuriant hair. So in this case X is just a reminder that they are supposed to drill around here somewhere.

And now it's time to meet the "halo" a dense metal basket that looks like a relic of some medieval dungeon, except with Velcro straps. The Versed, or as the medical staff like to refer to it "The good stuff" hits and... do I care that the Iron Maiden is being screwed to my skull? No, I do not.



4.) Less scary than it looks, especially when you're doped to the gills on "The good stuff."


I also do not care that I miss the part where the drill chews through my skull.



5.) Less scary than it looks, especially if you don't look at it. (Picture by Monica Volz)


But as the lead nears the target portion of my brain they must wake me to gauge my response to stimulation. The doctors have a sort of map to guide them, a composite MRI and CT scan, but they are also listening for the sounds generated by this part of the brain to let them know they are in the right neighborhood.



6.) The lower half of the graph above represents the electrcal activity of a single neuron. Courtesy of UCSF

Curious, I listen too. Am somewhat disappointed that the sound is much like static on the radio. But maybe that sound is more than we know, flick on your radio and perhaps what you hear as static is really the firing of the neurons in the deep brain of God. Oh wow. Hey, this Versed IS good stuff... Now that I'm awake, Dr. Starr puts me through some simple tasks and manipulates my forearms and wrists with abrupt precise movements. The anesthesiologist asks how I am doing. I confess that my butt feels like it is on hour 15 of a 14 hour flight. The entire process is repeated for the right side of my brain then followed by a short set of tests to help Dr. Starr with some research he is working on, and then it's back to sleep.



7.) The most dramatic thing you will ever nap through.

I wake in my hospital room, Mary Kay, Dan and Steve are soon ushered in, my dinner is also ushered in, and I destroy it with gusto. Best damn penne I ever ate. I feel bad eating in front of visitors, but not bad enough to stop. In fact I'm so hungry, I ask for another round. My room is shared with an older woman with breathing difficulty. We are never introduced, but separated only by a curtain, and with our defenses down we become intimate with each other's pain. She is in for a long night, as the staff must insert a catheter, this seems to take hours. I feel sympathy as I am catheterized, too, and not looking forward to the thing coming out. At some point during the next few hours the powers that be decide to go beyond fiddling with the catheter and mysteriously replace the entire patient. What became of her I have no clue. The new guy is obviously familiar with hospital routines, seems to have breathing troubles as well. My nurse Raisa, is not surprised to find me ready to check out the second morning, dressed and eager to get back to my family.

Friday, June 26, 2009

July 18 Meeting: Nothing but a picnic

Hello one and all,


Our meeting for the 18th of July will be our annual Summer  PD Potluck Picnic. It will be held at the fashionable and exclusive "Maison de Dunlap-Shohl" a handsome  though modest frame dwelling from the middle of the past century. We'll have salmon and buffalo on the grill, you bring whatever else you think we should have. New this year: Door Prizes!

This will be a great opportunity to get together, spill a few drinks, have a chance to talk PD, and examine the DBS stitches of Pierre, the Maitre de Hotel.

It all happens starting at 1:00 July 18 at 9601 Elmore  Rd. (formerely Abbott Loop Rd.)  To get there, take Abbott Rd East (uphill) through the intersection with Lake Otis Blvd. Continue up Abbott until you come to a stoplight that marks the intersection with Elmore Road, (formerly named Abbott Loop Rd.) take a right onto Elmore, heading South about a quarter mile and look for our driveway on your right. You will find the driveway marked by a large utility pole numbered 82-A, that stands directly across the street from our house.


We hope to see you, please let us know if you plan to attend.

Your Maitre D,

Pierre
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http://editorialcartoonists.com/cartoon/browse.cfm/DunlaP
http://frozengrin.blogspot.com/
http://offandonakpdrag.blogspot.com/

This is a test of the Remote Petecast System

Hello friends, fellow Parkinson's people, and ships at sea. I will be embarking shortly for what feels like the future. In my case, the future will involve holding very still while superintelligent beings and robots bore a hole in my brain and put the hurt on an overzealous part of my brain by implanting a wire in said brain part and goosing it with an electric charge to teach it some manners. Check previous posts entitled "It does take a brain surgeon" parts 1, 2, and 3 for more about the procedure.

You will be able to follow along here on the blog which Pam and I plan to update with what matters with my gray matter. The drill goes in Tuesday, welcome to the front row. Please refrain from smoking, spitting or yelling "Oh My God, I feel a sneeze coming on!" while my skull is open.


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http://editorialcartoonists.com/cartoon/browse.cfm/DunlaP
http://frozengrin.blogspot.com/
http://offandonakpdrag.blogspot.com/

Thursday, June 4, 2009

Better living through Parkinson's Disease



ABOVE: A typical person with Parkinson's altruistically escorts a Boy Scout across the street.

Are you industrious, a straight arrow who is detail-oriented, a bit risk-averse, and perhaps rigid in personality? Sigmund Freud might call you "anal", but a modern neuroscientist would suspect that you might be a person with Parkinson's Disease.

Leave it to PD to make "anal" sound like the more desirable diagnosis.

Other "Parkinson's Personality" traits mentioned by doctors who have extensive contact with Parkinson's sufferers include drive, ambition, altruism and cleanliness. There is a nice look at this phenomenon by the Boston Globe here.

In past conversations with people who work with Parkinson's patients, I have asked why anyone would go into such a depressing and frustrating field. Frequently the reply was that as a group we Parkinson's patients are an unusually pleasant lot. What's more, recent research found that People with Parkinson's Disease are less prone to lying than the average Joe. The study claims "Patients with Parkinson's Disease are indeed 'honest', and that this personality trait might be derived from dysfunction of the prefrontal cortex." You can find the whole abstract here.

Now consider: If you put "honest" together with "industrious", then toss in "altruistic" and "clean", you've got a fair approximation of the Boy Scout Law.

Which leads us to the startling question "Is dysfunction making me a better person?" And since PD is a progressive disease, will I get even better as I get worse? More altruistic? More ambitious? Cleaner? And how do you measure something like ambition in Parkinson's disease?

The height of ambition for me to get from the bed to the bathroom when I wake up in the morning. It takes a while for my meds to kick in, and until they do, I can only shuffle inches in the time it takes other people to go from bed to bathroom and back. In fact I got lapped this morning by my wife who passed me twice on my trip there between 6 and 7 a.m. (OK, my Parkie honesty compels me to admit that was a joke. And not only that, my "risk averse" side is pleading with me to take it out. But my altruistic side wants you to have a laugh...)

The implications here go way beyond Parkinson's disease. Assuming the world would be a better place if people were more honest, should we cheer the demographic reality that many more PD cases will be on us as the boomers enter their declining years? And will we have to stop calling them the declining years, and instead refer to them as the "inclining years"? Will con men start faking Parkinson's Disease, the better to win the confidence of their marks?

And if all that's not enough, what is going to happen when word gets out about how you can take off unwanted pounds by tremoring and involuntary spastic movement? Yes, I cannot tell a lie.

Parkinson's Disease is slimming.

Wednesday, June 3, 2009

Alert! Meeting place for support group changed

Hello one and all

I was just notified by the Anchorage Senior Center Activities Director that they will be closing on weekends this Summer. This means that we will be obliged to move to a different space for June 20, July 18 and August 15. So to make life simple, let's meet at my house for those three months. We have moved to a different house, but remain in the same neighborhood. We can be found at 9601 Elmore Road. To get to our house you can (1) head South on Elmore, go through the light at the Intersection with Abbott and look for our large green mailbox on your left. Option (2) Head up Abbott until you reach the stoplight at the intersection of Abbott and Elmore. Turn right at this stop light and follow Elmore a short way looking for the large green mailbox on your left that stands at the entrance to our driveway. Important! I repeat: We have moved recently, so those of you who have been to our house in the past heads up! Meeting time is the usual 1:00 p.m. I will post the topics for the meetings soon.

Your Benevolent Dictator,

Pete