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.
Welcometo all with an interest in Parkinson's Disease. This blog was to be an information clearinghouse for the Anchorage Parkinson's Disease Support Group, where meeting schedules, agendas, speakers etc could be found. It's still that, but has also become a sort of therapeutic hobby. So I invite you to join in the discussion and experience a little therapy as well. This will be as interesting as we as a community make it. Think loud and sound off!
Our Support group meets the third Saturday of each month at 3:30 in the afternoon. The meetings take place at the Anchorage Pioneer Home , 923 West 11th Avenue in downtown Anchorage on the fifth floor in the West lounge. You may call 350-9691 with questions about the group and meetings.
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The Knight Digital Media Center, judges of the Alaska Press Club's annual journalism awards selected The Alaska Parkinson's Rag for second place in the "Best Blog" category for 2008. Here is an excerpt of their comments:
"...Alaska Parkinson's Rag is many things: a community resource, a humor column, a science and medicine explainer. But it's also something that few blogs ever manage to be: addictive and gripping. Everything seems to work just right on this blog, and it is a powerful testament to what a person can achieve in this medium. "