Giving Michael J. Fox The Thug's Rush
Rush Limbaugh is a brilliant broadcaster, but compassion and veracity aren't his strong suits. He takes Michael J. Fox to task for appearing in a commercial for a Democratic pol, accusing him of going off his meds for the occasion. And, so what if he did? Then again, I doubt it -- both from my personal experience with somebody with Parkinson's, and from Fox's own words.

In reading through the comments on the Fox/Limbaugh post on Crooks & Liars, I found a link to Fox's account -- an excerpt from his autobio, Lucky Man -- about learning he had Parkinson's, covering it up, and the effects of the disease. A very moving piece. Fox writes:

I need to explain the "on-off" phenomenon. This Jekyll-and-Hyde melodrama is a constant vexation for the P.D. patient, especially one as determined as I was to remain closeted. "On" refers to the time when the medication is telling my brain everything it wants to hear. I'm relatively loose and fluid, my mind clear and movements under control. Only a trained observer could detect my Parkinson's. During one of my "off" periods, even the most myopic layperson, while perhaps not able to diagnose P.D. specifically, can recognize that I am in serious trouble.

When I'm "off," the disease has complete authority over my physical being. I'm utterly in its possession. Sometimes there are flashes of function, and I can be effective at performing basic physical tasks, certainly feeding and dressing myself (though I'll lean toward loafers and pullover sweaters), as well as any chore calling for more brute force than manual dexterity. In my very worst "off" times I experience the full panoply of classic Parkinsonian symptoms: rigidity, shuffling, tremors, lack of balance, diminished small motor control, and the insidious cluster of symptoms that makes communicationówritten as well as spokenódifficult and sometimes impossible.

Hypophonia, hypomimia, and "cluttering" can all get in the way of verbally expressing feelings and ideas. Hypophonia weakens the voice so badly that for some, like Muhammad Ali, simply making yourself audible demands a tremendous effort. So far I've been spared that particular challenge. When I'm "off," my struggle is with "cluttered speech" combined with hypomimia, the medical term for the "mask effect" often observed in the faces of P.D. patients. My ability to form thoughts and ideas into words and sentences is not impaired; the problem is translating those words and sentences into articulate speech. My lips, tongue, and jaw muscles simply won't cooperate. What words I do smuggle through the blockade can be heard, though not always comprehended. Try as I might, I can't inflect my speech to reflect my state of mind. And it's not like I can liven up my halting monotone with a raised eyebrow; my face, utterly expressionless, simply won't respond. Like Emmett Kelly, but without the greasepaint, I often appear sad on the outside while actually smiling, or at least smirking, on the inside.

Micrographia is precisely what it sounds like -- tiny writing. I have a stockbroker friend, a fellow Young Onset patient (amazingly, the friendship predates our diagnoses) whose secretary was the first to recommend he consult a neurologist. Over the course of a year or so, she had found it increasingly difficult to decipher his memos, and finally confronted him with the evidence of his incredible shrinking handwriting. Without drugs, my own penmanship becomes similarly microscopic. Combined with the stubborn refusal of my "off" arm to move in a smooth, lateral, left-to-right direction, the result is a fractured column of miniature scribbles.

These impediments to self-expression are not the most painful or debilitating features of Parkinson's disease, yet they madden me more than even the most teeth-rattling full body tremor. When the meds are "off" and P.D. has already rendered me a prisoner in my own body, the suspension of my telephone and letter-writing privileges seems excessive.

Then there's the sensation of not being able to settle, or land in any one spot for more than a second or two. When I'm "off," I feel like I'm dangling from a coat hanger that has been surgically implanted under my skin in the muscles of my back, wedged between my shoulder blades. The sensation is not quite one of being suspended in the air; it's more like being jacked up, with my toes scraping and kicking at the ground, straining for purchase, so that, if only for a moment, both feet can plant firmly and bear the full weight of my body. During the years I spent promoting the fiction that none of this was actually happening to me, my only recourse was to isolate myself and grit it out.

Three to four times every day, I go through the transitions between the two poles, navigating the tricky passage from the land of "off" to "on." The most surreal aspect of this thrill ride is that during every "on" time, I delude myself into believing that that, and not the other, is my "normal" condition.

None of the pills I take gives me even a mild buzz, but the freedom of movement and the interlude of physical grace they provide are intoxicating. I don't squander a nanosecond of this time contemplating the inconvenient truth that what I'm experiencing is not "real." I don't think about that when I'm splashing in the surf with Aquinnah and Schuyler, fishing for bass with Sam, or huffing to keep up with Tracy on the bike rides she loves so much. I truly do forget and, lost in this sublime ordinariness, it's easy to miss the subtle twitches, creeping rigidity, and vibrating sensations urging me to crack open the vial and toss back another little blue pill.

Every P.D. patient's experience is unique. Mine is this: If I miss or ignore those early-warning signs, there's no second chance. I am down for the full sixty to ninety minutes. It's no good upping the dosage, either -- that only results in exaggerated dyskinesias (random, spastic, hyperextended movements of the extremities) when the L-dopa finally does take effect. As with the "on" period, it is hard to believe that the "off" is ever going to end, and it doesn't help to remind myself that it always does.

Arranging life in order to be "on" in public, and "off" for as little time as possible, is a balancing act for any P.D.er. In my case, the gut-wrenching prospect of losing my balance, figuratively or literally, on The Late Show, say, or at a public event where there was no way to avoid close scrutiny, loomed ever larger the longer I remained in the closet.

Learning to titrate medication so that it kicked in before an appearance or performance, sometimes within minutes of my cue, became a process of continuous tweaking and refining -- lots of trial with little room for error. Timing a punchline was a joke if I hadn't timed my meds accurately. I became a virtuoso at manipulating drug intake, so that I'd peak at exactly the right time and place.

When the L-dopa begins to work, and the current "off" segues into a fresh "on," the sheer relief of the transformation is its own special high. The people close to me are attuned to the physical ceremony that marks my latest transition back into the world of the fully functioning -- the subtle sigh, accompanied by a sudden spastic thrust or two of my left leg, immediately followed by the outstretching of my arms and rolling of my head. The leg thrusts are involuntary but entirely welcome, because they signal the beginning of the end. As the tension leaves my body, it always travels down and through that particular limb, and then into my foot, which rotates three or four times. Finally, as if being pulled by the force of a vacuum, the tension disappears, departing through the sole of my left shoe. The extension of my arms, and rolling of my head, are simply my body's way of celebrating the reunion of mind and motion.

This ritual ending of an "off" period is immediately followed by another personal rite, this one marking the return to "on" status. If you ask Tracy or anyone else who spends a lot of time with me, they will tell you that I do, and say, the same thing every single time: I smile, close my eyes, and then, like Barry White on helium, croon, "oh baby . . . I love it when the drugs kick in."

One caveat -- the research, via Columbia University, that Fox mentions (at the link) on the power of prayer was actually fraudulent. Of course, as anybody rational would expect, distant people praying for you doesn't affect health outcomes. Okay, Fox is just an actor, not a Ph.D., but like too many people, he's immediately taken in by the label of a prestigious university on a study...even when it so obviously flies in the face of reason.

And, getting back to the original subject, here's another video clip of Fox, on Inside The Actor's Studio, in which his Parkinson's is somewhat apparent, although the clip mainly includes a head and shoulders shot.

Posted by aalkon at October 24, 2006 10:46 AM

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