The heart of the (gray) matter

“I’m on the rollin’ river in a jerkin’ boat / Tryin’ to read a note somebody wrote / About dignity.”
—Bob Dylan

Despite the advance directives, despite the dire warnings, despite the night-before visit by a clergyman and despite the ashen look on my wife’s face right before they wheeled me into the operating room, the gravity of brain surgery to alleviate my aggressive Parkinson’s symptoms didn’t really hit home until Dr. Conrad Pappas started sawing into my skull.

I was awake during most of the operation. And the skull sawing hurt. Not as bad as the thorny-crown fitting of the head cage early in the morning—imagine four wood screws slowly turning into your skull. That hurt so much that I cussed until Pappas calmly made my head comfortably numb with more local.

But this, the main event, felt like a dull serrated knife cutting into an unripe melon. “Put on Van Morrison,” I blurted to the anesthesiologist, who, in addition to controlling my breathing and stabilizing me for the drilling to come, controlled my sequence of CDs (patients pick the music for their surgery). He had Annie Lennox going, which is fine for the catheter (ouch), but not the slicing of the skull. Put on Van Morrison!

Van’s buttery baritone helped: I was told later my blood pressure jumped when he was taken off so the surgeons could listen to an ultrasound-like device charting the electrical activity generated by my brain.

But fear morphed into quiet terror as I gripped the anesthesiologist’s forearm for the drilling. Using a diamond-tip drill—with a safety catch to make sure it didn’t bore into the gray matter itself—Pappas followed the initial slicing into my scalp by tunneling a quarter-sized hole into my skull to put in an electrode that ideally would pick up where my dying brain cells left off.

Prayer was hypocritical at this point; my clergyman visit beforehand was more of a debate as I wondered out loud why they don’t also offer clowns or lap dances prior to life-and-death surgery. So, it was a surreal, almost out-of-body experience of being awake while a sharp implement did the twist with my noggin. I heard operating-room banter from the serious to the mundane. (“Fragments, irrigation” … “Have you seen the latest issue of Neurology magazine?” … “Do fish sleep?”) I didn’t think of a higher power. I didn’t think of sin and redemption.

I stared through the bright lights at the white ceiling and thought of Woody Allen.

“I don’t mind dying,” Allen once quipped famously. “I just don’t want to be there when it happens.”

Death didn’t happen, of course, but it was quite a ride. The boat’s still jerkin’; in some ways I’m better, and in some ways worse, and it may be months until I fully realize the benefits of this complicated surgery for an even more complex disease.

But if I had to do it all again—and I might have to because only one side of my brain was done—I would.

I got deep-brain-stimulation (DBS) surgery after a year on a waiting list long on patients and short on qualified neurosurgeons that need to have the guts of a burglar, the patience of Job and the fingers of Eddie Van Halen.

Bunion-removal surgery it ain’t. DBS is a lengthy procedure costing around $100,000 that involves two neurosurgeons; head cages, needles and implants; eye-watering pain; batteries and remote controls; and no margin of error. DBS involves putting a thin wire to a very specific brain area that controls movement. The wire runs from a small hole in the skull and under the scalp down to a small neurostimulator implanted beneath the collarbone. The neurostimulator emits tiny electrical impulses down the wire into the brain, where it can alleviate many of Parkinson’s troubling physical symptoms. It is especially good for tremors.

Although not without risk—preplanning involved lots of talk about strokes, bleeding and death—the procedure can have profound results for the disabling symptoms of Parkinson’s disease, a devastating neurological disorder that, at my ripe age of 41 (I don’t feel a day over 96), is kicking my butt.

Hey, Michael J. Fox? What’s shaking?

Us!

“Michael J. Fox disease” as I often refer to it when talking to the unfamiliar, rather than proffer a lengthy discourse on Parkinson’s, or “PD,” has, at various times, robbed me of my ability to work, my sanity, my dignity, my friends and family who can’t handle it, and my pride. They say only the good have Parkinson’s—Fox, the Pope, Janet Reno, Muhammad Ali and Billy Graham—but Hitler likely had it, too, and I think that explains a lot. Although I have never felt like invading Poland, Parkinson’s can bring out the worst in people. And, in small but meaningful ways, it also brings out the best.

It has made my wife’s life a living hell. I’m lucky to still be married; divorce rates among young “PDers,” who often have behavioral, financial and psychological problems to go along with all the physical strife, are high.

My symptoms have become so disabling and socially embarrassing that I am mostly a shut-in. I eat with the grace of a 2-year-old, I fumble for my wallet when paying for groceries, and I usually decline alcohol at parties because I stumble around to begin with.

To have Parkinson’s at any age is humbling. To have it at 40 or younger is to be a social leper. Young-onsetters now make up about 10 percent of PD sufferers, and this percentage is growing, perhaps because doctors are now better informed, perhaps because there is increasing evidence that environmental toxins such as pesticides (I handled my share during outdoor summer jobs) have a role. The disease has neither a known cause nor a scientific diagnosis. It is even found nowadays in teenagers. Everything about Parkinson’s—sufferers are like snowflakes; no two are alike—is guesswork.

I pop 40 pills a day. Stocking “Marilyn,” my rotating pill container, is like painting the Golden Gate Bridge: The work is never done. Most are high-power brain pills that work well until they don’t: Although you can’t get by without them (think the Tin Man sans the oil), the pills can, depending on the individual and how they interact with his or her brain, have side effects akin to bad acid trips. Hallucinations, confusion, obsessive/compulsive behavior often concerning sex, spending sprees or gambling, and paranoia are common. I have been to Parkinson’s support groups (I am usually the youngest by a good 10 years) where the topic was “My Hallucinations.” The pills still help, but not much. Marilyn has about as much power as a Pez dispenser and none of the decadence. Although they can be effective enough on a good day to allow me to ride my bike, the pills are mainly good for short bursts: It is kismet if I can go two hours without having to lie down.

My “off time”—a.k.a. “turtle time” in my house—is increasing. So is my dyskinesia, the wild, involuntary gyrations—one of many humiliating side effects, in this case the hellacious price you pay for starting young on the gold-standard PD drug Sinemet (dyskinesia often renders it fool’s gold), that make me look like I’m grooving at a Dead concert when I actually am trying to sit still.

My problems started in 2000. Life was good. I was a correspondent for a national magazine, I was a part-time college lecturer, I was remodeling our house in East Sacramento, I made good money on a dot-com startup before it dot-bombed, and I had started writing what turned out to be a very complicated true-crime book. At first, it was a slight arm tremor. No big deal, the doctors said, probably just a weak muscle. I was, after all, now in my late 30s and living a more sedentary lifestyle. Graying hair, glasses, a bit of a spread, and now a shaky left hand. I had seen family members shake. Not to worry.

But despite me exercising more and eating right (to the point that I bought a juicer and drank my own horrid V-8 alchemy twice a day), despite me only listening to Keith Richards instead of living like him, despite an MRI that was taken as a precaution and showed no abnormalities, the tremor persisted. So did the fatigue. An active athlete in my day, a bicycle commuter for years, I now got winded easily doing things like washing the car. I dropped things.

I wore a poncho to conceal my shakes and cited an old knee injury when asked about my new limp. I became moodier and went on buying sprees on eBay. I had a penchant for old bobbleheads—how ironic that I would become one.

By the time you are diagnosed with PD, it’s likely you have had it for years—in my case, as early as 30. Most people who have it don’t yet know they have it. Very simply put, PD is characterized by a lack of dopamine, which controls movement (although it would seem the other way around from the symptoms, your body is fine, but your brain has issues). By the time most people are diagnosed, they are short of dopamine and running on fumes. Most people think it is just a physical disease and not psychological. Any caretaker or sufferer will tell you different: I have yet to talk to a PDer who wasn’t on antidepressants; many are in some sort of therapy.

There is no X-ray or blood test to diagnose it—it is what the medicos call a clinical diagnosis. In other words, it is based on deductive reasoning. Many with Parkinson’s are misdiagnosed.

I, for one, went from the agony of being told I likely had it to the thrill of one well-meaning neurologist telling me he was “very sure” I didn’t have it and then to where I am today: with an aggressive case that leaves me unable to do a number of things. I can’t work, other than some freelance writing and editing; travel; walk more than a block or two at a time; or eat anything but bland, fiber-rich food (PD constipation is excruciating), though occasionally I live dangerously and have a Big Mac.

Desperate young-onsetters tend to be gullible to quick cures and black magic. I once drove to San Jose to be treated by an acupuncturist—who hastily set up camp inside an Asian food store. He also “cured” cancer and whatever else walked through the door. It was a long drive home. Many turn to smoking pot, which has been shown in some studies to alleviate certain symptoms, such as stiffness and dyskinesia, but which also can aggravate others, such as paranoia and forgetfulness.

My symptoms were stealthy at first. At the end of a routine physical in 2000, my regular Kaiser Permanente doctor was about to move on to the next patient, when I mentioned almost apologetically that I had the shakes in my left arm when I put pressure on it. She seemed more concerned about it than I was, and she promptly referred me to a neurologist.

I have spent a lot of time in neurology waiting rooms since, probably more than all my other life’s medical appointments combined.

To be in a neurology waiting room is to be scared, to avoid eye contact with other patients, many of whom are shaking, writhing and reminding you how the world probably views you. You don’t go alone to neurology appointments. I’ve even gone with my mom. They are the Island of Misfit Toys of the medical complex.

The only thing spookier than being in the neurology waiting room is to be squeezed into one of the smaller neurology exam rooms, which are decorated in Contemporary American Brain Disorder.

Dr. Vicki L. Wheelock helps. When she whisks into the exam room—and Vicki Wheelock is never not moving—it is like when Oz goes from black and white to color. An eternal optimist in a heartbreaking medical field, movement-disorder specialist Wheelock is not what you expect a neurologist to be. For starters, she is a she, something only about 5 percent of neurosurgeons are.

She is a modest, 40-something mom with a round, kind face, who, despite a manic schedule, does her own house cleaning and grocery shopping and seems keen on having an ordinary home life to balance her extraordinary career.

When I am scared or nervous during an exam, which is usually, I focus on Wheelock’s toes. A different nail color every time peeking out of a pair of open-toed footwear du jour, a “See? I’m fun, too” contrast to the white lab coat and sensible hair and glasses. I couldn’t see her toes during my surgery, but hearing her friendly voice after the drilling was the next best thing to Van’s.

Dr. Vicki, as we call her—slightly sexist but somehow fitting—nailed it during one exam in early 2002. It took her about five minutes of kneading and prodding, including trying to knock me over from behind to test my balance or lack thereof. (She has yet to succeed, but the timber moment is nearing.) She confirmed what others could not figure out throughout the prior two years: “You have Parkinson’s!” she chirped with a knowing smile that belied the gravity of the “You’re screwed now” news.

“Cool!” I almost blurted out.

“Parkinson’s,” she told our very worried selves after confirming the diagnosis, “is one of the more treatable brain disorders there is.” Optimistic news until you check out other brain disorders—yipes!

Despite my obvious and rapid decline, in subsequent visits and e-mails—and I’ve lost track of how many there have been—Dr. Vicki has been equal parts doctor, big sister and counselor. Once, she eased next to me on the crinkled white-paper exam table and, in big-sisterish fashion, both of us dangling our feet and looking down as if staring into an imaginary wishing well, said in a soft voice, “You know, Joel, you have a lot of symptoms that surgery would help.”

“You mean, um, brain surgery,” I said.

“Yes.”

Dr. Vicki and I haven’t always agreed on things, though lately we seem on the same page about pesticides and PD, an area she has studied intensely, to the point that she has examined young-onset migrant workers exposed to the same poisons I likely played and worked near as a youth in rural Yolo County. But disagreements aside, I’m not sure I would be around still if it wasn’t for Vicki Wheelock.

And now, she helped me stay around to finish this article, by spending a leisurely Tuesday helping Conrad Pappas drill into my head.

“Sick man lookin’ for the doctor’s cure / Lookin’ at his hands for the lines that were / And into every masterpiece of literature / for dignity.”

My wife and I didn’t have much of a chance to pick Pappas’ brain before he literally picked mine. To have but one meeting with the guy who controls your life with each millimeter movement of his fingers is both scary for obvious reasons and strangely reassuring in a no-emotional-attachment-is-good way.

Like Wheelock, Pappas, who also holds a PhD in addition to an MD and directs Kaiser’s Clinical Functional Neuroscience Program, struck my wife and me as so … normal. He is the antithesis of the tall, square-jawed, silver-maned surgeon from Central Casting, a small fellow who credits the old-school tradition of working impossibly long hours as a resident for getting him through surgeries that are physically and mentally exhausting. Pappas—whom I have yet to see out of operating scrubs, and who does up to eight of these operations a month—is a regular Joe with wide broadband, conversant in everything from sports (“Shaq is likely too big to have DBS. Shaq’s head is likely bigger than the head cage, so he could not have DBS,” he let on) to world history (we discussed Josef Stalin’s role in World War II during my operation) to the latest on J.Lo’s love life. Nurses told me it is not unusual for him to end a grueling day in the operating room by poring over the latest neurology journals at night.

He has done hundreds of neurological procedures. Mine seemed as routine to him as it was extraordinary to me. Good.

Deep-brain surgery is now the preferred neurological procedure for treating advanced Parkinson’s, because, unlike more-established procedures, such as thalamotomy and pallidotomy, which actually destroy part of the brain by literally burning brain cells, DBS is reversible. Based on technology that has been around since the 1960s and popular since the late 1990s, DBS is used to great effect for essential tremors and to varying degrees of success for many Parkinson’s symptoms, as well as for other brain disorders, such as Tourette’s syndrome. In my case, I am mainly hoping for relief from stiffness and rigidity, especially in my left leg, which at times gets so stiff that walking goes from difficult to impossible.

Although it is dopamine PDers lack, DBS does not directly affect dopamine levels. It works by stimulating specific areas of the brain that control movement and muscles—the good ol’ subthalamic nucleus or globus pallidus interna that we all know and love.

The Kaiser team does this surgery for patients as far away as Colorado and has been doing DBS since 1998.

My relaxation music for the surgery also included Miles Davis’ “Kind of Blue,” an apt choice because the Kaiser team reminded me of a jazz quartet in scrubs. The team members soloed and improvised where necessary and played together at key moments. Nurse practitioner Christine Na-Lee, the case manager, kept the beat with a lot of the prep work, including patient education and overseeing a pre-surgery MRI, which, when you add the claustrophobia of being inside the MRI machine, on top of the head cage, makes one feel like a human Pop Tart.

Parkinson’s specialist Dr. Karen Sigvardt monitored the brain activity via an electrode—she’s the proverbial keyboardist in the band—put into place by Pappas. Each part of the brain emits sound waves that Sigvardt listens for—the Parkinson’s-affected regions are identified by their hyperactivity.

This is where Wheelock enters the picture. Working closely with Sigvardt and her sound waves while Pappas worked the brain, Wheelock moved the limbs around on my affected/left side, trying to find the place where the electrode provided the most relief. As she manipulated my left arm and leg like I was a giant G.I. Joe, her eyes lit up when she found an apparent groove in which the electrode placement in my brain seemed to be making my PD-affected limbs more limber.

Once this optimal target site was found via a microelectrode, Pappas inserted the permanent electrode, and Wheelock ran a series of tests at high intensity to watch for unwanted side effects, such as double vision, difficulty speaking and brain lock. “How many pens do you see, Joel?” she asked. “What is today’s date?”

After it was clear that I was only seeing one pen on the right day, Pappas anchored the electrode into my skull and stitched it closed.

I don’t recall much after that, other than the removal of the head cage, which felt as good coming off as it did awful going on, and the crusty anesthesiologist joking that he was putting me under with air from “Granite Bay—you know, the fancy stuff Chris Webber breathes.”

“Well, then, I hope I don’t choke,” I cracked as I drifted off. Pappas then cut open my chest to put in a pulse generator, which connects to the brain implant by a thin wire. The lead goes from my brain, under my scalp, down the neck and to the pulse generator, which is below my right collarbone.

The ensuing hospital stay was a miasma of morphine, bad TV, cravings for Taco Bell, midnight room changes from intensive care to regular care, a terrific intensive-care-unit nurse named Lisa Horst, and visitors who recoiled at the sight of the new me. I can’t say I blamed them. In the daze following surgery, I looked in the mirror, and I didn’t see Joel Davis.

I saw boxer Chuck Wepner, the human tomato can who stayed on his feet for 15 sadistic rounds with Ali, inspiring Sylvester Stallone to create Rocky. My face was bloated; I could barely see (“Cut me, Mick!!!” I joked during my strolls down the hospital corridors); and my hair was gone, except for a few sad tufts left by Pappas, who is a great surgeon and a lousy barber.

But I’m still standing. I made it. I am officially implanted, bionic or whatever you want to call it. I have a remote control that looks a lot like a Sears garage-door opener as proof. My implant has already set off the metal detector at the library. I can’t wait to go to the airport.

The hospital stay was followed by a three-week-long convalescence in which the key word was pus—specifically, avoiding it. An infected wound can undermine the whole operation, which I heard happened to one poor woman who had the procedure around the time I had mine.

Wheelock warned me that patients often feel hypermania or severe depression following DBS. It was the latter for me, something I have struggled with since my diagnosis—but this was different. This rendered me a potted plant. I spent most days doing little besides reading, contemplating my navel and watching daytime TV, something I never did pre-surgery. I had writer’s block for the first time in my life. I lost the creative spark that inspired me to take on this article, and I even tried to beg out of it a few times.

The depression wasn’t helped much by the fact that, unlike some people who get this surgery—the wonder cases on Oprah and 60 Minutes or the spokesmodels on the promotional video put out by the company that makes the pricey implant device, who seemingly go from near-paralysis to bowling, gardening and jogging at the flip of the switch—the Kodak moment is still eluding us. The celebratory dinner my family had planned was quietly canceled.

“So many roads, so much at stake / So many dead ends, I’m at the edge of the lake / Sometimes I wonder what it’s gonna take / To find dignity.”

On my next big day, June 30, Na-Lee used a Palm Pilot-like device hooked up to my chest to turn on my stimulator. My in-laws and wife were excitedly squeezed into the exam room with me. I certainly felt the thing being activated. The best way I can describe it is to imagine a light filament in your head turning on. Warm and tingly. Na-Lee upped the voltage. Too tingly!

“Turn it off! Down!”

I felt it to the point that my face felt like it was melting, my speech slurred, and I implored Na-Lee to lower the volume. The preoperative worry I saw on my wife’s face was back.

Between that and some follow-up adjustment appointments with Wheelock, I have realized some benefit, namely in having more dexterity and flexibility in my left arm. I can now type again with my left hand, and my body pulls less to the left, so the thing indeed works. How well it works is to be determined.

DBS only works as well as your meds—and because my meds allow me to walk normally during peak times, I was hoping that surgery would do the same. But so far, it hasn’t. If anything, walking has gotten more difficult since the surgery (though the progression of my disease likely plays a role here). I now take a cane for walks longer than a block or so. My balance is worse. So is my dyskinesia.

But I remain hopeful; there is little other choice. There are thousands of settings for my new stimulator. I am on low ones—and Wheelock, as well as some who have had DBS, have cautioned me that it may take months before the optimal ones are found. “If I could prescribe anything for you, Joel, it would be patience,” Wheelock tsk-tsked during my last appointment. Good programming—and there seems to be a shortage of this skill just as there is a shortage of surgeons—seems to be as important as the procedure itself.

I am also fortunate in that I have medical insurance—many people who need the surgery simply can’t afford it—and I also live very close to Wheelock’s office and have a lot of people who care about me.

I am hopeful, but I am also realistic. I used to like to boast that I have Parkinson’s—Parkinson’s doesn’t have me. But even with surgery, it is apparent Parkinson’s does have me. Most of me, anyway.

What it doesn’t have is my heart. Compassion was never a strong suit of mine—but almost by default, I have become much more sensitive to people with disabilities and other setbacks. When someone limps through a crosswalk, I smile at them rather than frown at my watch. I live in the moment more because my moments may be numbered. Perhaps this surgery will buy me some time to see a cure, or some other new therapy—after all, it wasn’t that long ago that DBS came along, though there doesn’t seem to be as much money in cures as in treatments.

Dignity … I was willing to go through painful brain surgery to regain it. But dignity, I have learned, is more complex than scalpels and drills, pills and implants, and remote controls. Dignity is my wife, the real hero in this story, comforting me at 3 a.m. during yet another nightmare and accompanying me to nearly all my many appointments. Dignity is my 77-year-old father attending heart-wrenching PD seminars and writing a president he likely voted for and pleading for stem-cell research. Dignity is holding my head high while wobbling around the neighborhood with a cane. Dignity is the neighbors on one side edging my lawn and allowing me to exercise in their pool and the neighbor I hardly knew on the other volunteering to drive me to the doctor and coming over for coffee.

Dignity is the friends who can still handle my disease dropping in to sit with me even though they have a thousand other better things to do and I am not the friend they once knew.

Disease and tragedy tend to do funny things to friendships: You win some new ones, you lose many, and you keep a few of the really good ones. One of these keepers, a dentist who shares my love of baseball, put my whole brain-surgery ordeal—and that’s what it is, an ordeal—in perspective.

“So, how did it go?” he asked after the stimulator was turned on.

“OK, I guess. I dunno. … Maybe a single or a double.”

“Well, the important thing is you are on base.”

Amen.

Pass the remote.

Sacramento writer Joel Davis is finishing a book, Justice Waits: The UC Davis Sweetheart Murders (www.justicewaits.com). You can reach him at davis916@surewest.net.