So everybody wants to know... Did the operation work? Are you doing better? Do you feel better? The answer, like so many things in the Parkinson's world is coming slowly. But that answer seems to be yes.
How can I be almost a month down the road from the operation and just now coming up with that conclusion? There are a number of variables at play.
Variable one: the operation itself can cause a temporary lessening of symptoms. As the brain swells from the physical insult of the operation, it somehow copes better with the typical symptoms of Parkinson's: tremor, stiffness, slowness. This leaves the patient wondering post-op if it's the "Honeymoon" or the placebo effect or actual lasting improvement.
Variable two: Once your stimulator is turned on, you begin to cut back on your pills, replacing medication with stimulation. So for a while you grope around with gradually raising your voltage while lowering your dosage. It takes time to find the balance. Because I move the voltage up in tiny increments of one tenth of a volt it has been a drawn-out process to replace the ability to move that I lost when I cut down my medicatiion. But I'm getting there.
Variable three: The head cold from Hell. My wife, son and Step mother all came down to help out and support me during the operation. They were punished for this good deed with a never-ending head cold that Pam is still recovering from. I got it too, presumably as punishment for their punishment. When one is sick on top of Parkinson's it ramps up your Parkinson's symptoms above their usual level. Throw that in with variables one and two, along with jet lag and lack of exercise, and you're looking through some muddy water.
Thanks to time and antibiotics some markers are emerging that add up to progress.
1.) TREMOR: What tremor?
2.) FREEZING: Episodes rarer as stimulation finally up to "critical mass"
3.) SINEMET INTAKE: About half the pre-operation level
4.) JOE COCKER: Amount of bizarre unwanted movements has been greatly reduced.
Wednesday, July 22, 2009
Tuesday, July 21, 2009
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
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.