Reaching Down the Rabbit Hole (21 page)

“But do you do that all the time?”

“No. I came over because I was so overwhelmed with emotion. I just wanted to let it go. I digressed from what was happening in my life, and I went into a new life.”

“And you really wrote for Youngman?”

“Henny was a dear friend of mine, rest his soul. I ate in his home innumerable times. He paid me a dollar a year so I could say I wrote jokes for Henny.”

“You know,” I said, “as a kid I was a waiter in the Catskills, and I saw all those guys, and I picked up their timing.”

“Where did you wait?”

“Tamarack Lodge. I was at Grossinger’s for one summer. So how did you get into writing jokes?”

“Just natural. I never write anything down. I’m blessed with a photographic memory. Some of it is creative, but some is material that I hear. I may embellish, I may change and so forth. But we can’t endure without humor.”

“That’s my feeling,” I said, “but as you well know, not everybody shares that. I think life is too serious to be taken entirely too seriously.”

“This is true,” Sheldon replied.

10

The Curse of the Werewolf

On the front lines in the battle against Dr. Parkinson’s disease

She is standing on the main floor of Grand Central Station, at the base of the west stairs, with her right hand on her hip and her left hand propped on the marble balustrade, frozen in the posture of a teapot. She has missed her stop, and is trying to decide whether she can find her way back without phoning someone, without asking for help. A moot point, because she knows that for the moment, in this crowded, familiar place that is now so unfamiliar, she may not be able to speak the words forming in her head. She has to suppress the panic and start over, revisit the plan for the day.

She has ventured out because no matter how badly she feels, she never misses her dance class. On some days, the effort to get there seems Sisyphean, but she manages to move the boulder to the top twice a week without fail, as if to fail once would be the end of her.

Her name means Hope, a fact that no longer holds much significance for her. She lives in the here and now, in the day to day, specifically in the tactical planning of every single day, as though a cadre of
majors and generals were deploying troops, tanks, and artillery batteries around a large-scale mock-up of the theater of operations in the bogged-down war playing out in her head. But instead of a map, she has a whiteboard in her kitchen. The board for today has a bulleted list that includes pills, meals, money, workout clothes, a timetable, directions, reminders, emergency contact numbers, and a few motivational phrases:

Happiness is a decision.

What other people think of me is not my business.

Live and try.

A young woman descends the grand staircase of the concourse from the mezzanine, in thrall to the constellations mapped out on the ceiling. She is in her twenties, no longer an undergraduate, surely from out of town, well-dressed, vibrant, happy, and lost.

“Can you tell me how to get to the Times Square shuttle?” she asks Tikvah, who at first stares, as though she’s looking at the young woman through inch-thick plate glass. She knows precisely the way to the subway entrance, but the words won’t come. She can only point to it with her eyes. She tries to gesture, she is not mute, she knows what she wants to say, but finds herself unable to say it. The spinning motor in her head has slowed down, and the clutch won’t engage. Independent of her
knowing
how to get to the subway entrance, the mechanism that effectuates the
giving
of directions isn’t working. Most people do not have to think about this, but Tikvah does.

The young woman looks around, embarrassed, unnerved, and retreats without a word, but the encounter jolts Tikvah back to her own itinerary: go left, up the corridor, then down to the turnstiles. Take the 6 local to 59th Street. Uptown. Two stops.

Tikvah lives in the East 90s, in Yorkville. She is a slight person, and has a tendency to tilt forward when she walks, bending at the upper
spine so that in profile she looks vaguely like a question mark. If obliged to stand still, she will episodically push one foot ahead in a half step, place her hand on her hip, and make a few rocking movements with her upper trunk, somewhat like the rhythmic to-and-fro-ing made by religious Jews when they pray, or
daven
. Given her disdain for any religious extremism, the very idea that someone might think she is davening mortifies her. While walking, she will periodically wind one or the other arm forward and to the side, turning the palm outward 90 degrees, by itself an odd gesture, but one she can morph into a natural movement by continuing it up to her head, as if she is fixing her hair. She doesn’t shuffle, but her steps are short and close to the ground, and she has a tendency to look down when the terrain changes. Her foot placement is surprisingly precise. There is a delicacy to her appearance, perhaps because of her slight frame, making her look like a ballerina walking on snow.

It takes her ten minutes to reorient herself, in much the same way that it takes her ten minutes to figure out how to make a cup of coffee at home, or ten minutes to begin to get dressed, but she gets moving again, gets back on the subway. Upon emerging from the 59th Street station after a brief ride, she recognizes the terrain, the panic has subsided, and she is buoyed by the idea of stepping into the dance studio, dumping her bags, and starting to stretch. In the company of her fellow sufferers, she can let her guard down, and for a short while at least, stand without support, reach without bracing herself, move without any self-consciousness.

“Do you want to hear more?” she asks me. We are in my office, and she has been filling me in on her daily struggle.

“Yes, I do want to hear more.”

“I can’t put on my own makeup. I don’t go out as freely as I would like. I don’t have the energy, and that affects my mood. I can get really down about it.”

“And the classes help?”

“Oh, yes. I have my tai chi class and my dance class. I can do things there . . . no,
we
can do things in those two classes that we cannot do in other situations. We can move without holding onto anything, do balance poses. When I walk out of there I’m high as a kite. I always make sure I get there, even if I’m exhausted. It makes a very big difference.”

A bigger difference-maker is the medication I’ve been prescribing to replenish the dopamine level in her brain and restore motor function back to her control. We meet periodically to find the right timing and dosages. She is haunted by hallucinations, one of the common side effects of the drugs, but also of the disease itself, and unfortunately for Tikvah, her visions are not caused mainly by the pills.

“When they started,” she says, “the hallucinations, what I saw at first was Queen Elizabeth and her corgis in my fireplace. Just sitting there. I also had Dick Tracy come by. He had a yellow overcoat. It was Warren Beatty. He was coming in from the kitchen looking for someone. They don’t look at all fake, I can’t see through them, and they move.”

“Do you talk to them?”

“No. Jimmie Walker from
Good Times
has been showing up in my kitchen, and he doesn’t speak and that scares me a little. He doesn’t say, ‘Dy-no-mite!’ He comes to visit at the end of the day when I’m alone and tired. I see him more frequently when I’m tired. But I’ve discovered the clues that let me know when they will come. My mood will change before they visit. Sometimes the mood swings can be very frightening, but I have figured out where they come from, so I work around it.”

That last phrase sums up Parkinson’s disease for the million or so Americans who live with it: they work around it, with varying degrees of success, depending on the form of the disease, its progression, and the treatments available to them. There is no remission, there is no cure. There is perseverance, there is resilience, but there is also annoyance and frustration.

Tikvah is a family friend. I have known her for over forty years. I gave her the diagnosis of Parkinson’s on the day of the September 11 attacks. Although I am not technically a Parkinson’s specialist, she
would have become my patient anyway, unlike some of the well-heeled Parkinson’s patients I now follow, who came to me mostly because of a patient I first saw twenty years ago—Michael J. Fox. The quotes on Tikvah’s whiteboard are from Michael’s book,
Lucky Man
. The sad irony of her situation is that Michael is indeed a lucky man in a way that Tikvah is not, in a way that makes his prognosis better than hers, and it has everything to do with Dick Tracy, Jimmie Walker, and the Queen of England.

In the early 1800s, James Parkinson established a surgery at 1 Hoxton Square, in the Hackney borough of London’s East End. Although trained as a surgeon, he had the keen eye of a clinician, and when he was not seeing patients in his clinic, he looked for pathological cases outside of it. This is how he came to describe three men who frequented the neighborhood, and whose alarming physical signs suggested that they suffered from a condition that medical science had yet to classify. The first case he wrote about was

a man sixty-two years of age, the greater part of whose life had been spent as an attendant at a magistrate’s office. He had suffered from the disease about eight or ten years. All the extremities were considerably agitated, the speech was very much interrupted, and the body much bowed and shaken. He walked almost entirely on the fore part of his feet, and would have fallen every step if he had not been supported by his stick. He described the disease as having come on very gradually.

The next was

a man of about sixty-five years of age, of a remarkable athletic frame. The agitation of the limbs, and indeed of the head and of the whole body, was too vehement to allow it to be designated as trembling. He was entirely unable to walk, the body being so bowed
and the head thrown so forward as to oblige him to go on a continued run, and to employ his stick every five or six steps to force him more into an upright posture by projecting the point of it with great force against the pavement.

The last, a gentleman of seventy-two years,

first perceived weakness in the left hand and arm, and soon after found the trembling commence. In about three years afterwards the right arm became affected in a similar manner, and soon afterwards the convulsive motions affected the whole body, and began to interrupt the speech. In about three years from that time the legs became affected. At present he is almost constantly troubled with the agitation, which he describes as generally commencing in a slight degree, and gradually increasing, until it arises to such a height as to shake the room, when, by a sudden and somewhat violent change of posture, he is almost always able to stop it.

Parkinson queried some local physicians about similar cases, and in 1817, with three more patient histories in hand, he produced a monograph entitled
An Essay on the Shaking Palsy
. So keen were his observations and so crisp was his writing that the great French neurologist, Jean-Martin Charcot, would later decide that the disease Parkinson so ably described should be named in his honor. And so it was, even though it defies simple classification.

Like James Parkinson, I indulge in on-the-street diagnoses of Parkinson’s disease and the spectrum of physical symptoms that come under the umbrella term
parkinsonism
. They are not hard to spot. Some sufferers are beset by slowness and rigidity, visible not only in their bearing but in their faces. Others, outside of their medication cycle, suffer from a characteristic slow tremor, often only on one side. Those in the midst of a medication cycle trade off tremors for hyperkinesias—exaggerated movements of the arms and neck—that
many have incorporated into their body language. Such is the case with perhaps the world’s most famous Parkinson’s patient.

Michael J. Fox was first diagnosed with the disease in 1991, at the age of thirty-one, at a high point in his career. By the time he went public about his condition five years later he was starring in one of the top-rated shows on television (
Spin City
), had a string of post–
Back to the Future
movie hits under his belt, and was one of the most popular and widely recognized celebrities in America. That he happened to show up in my office before the public knew of his condition was a fluke. At the time, he was working in New York with Woody Allen on a television movie, a remake of the 1969 film
Don’t Drink the Water
. His condition was still a tightly guarded secret, one that was becoming increasingly difficult to keep hidden.

The referral came from Lenny K, my former senior resident when we were training in internal medicine in San Francisco. Lenny is the most charming and committed physician in New York City, and he has managed to situate himself in a neighborhood and in a type of practice that has attracted the TV, film, and entertainment crowd. Over the years, he has sent me a stream of young, restless, bold, and beautiful daytime soap stars with the most mundane complaints, for whom a professor of neurology in Boston had a calming, therapeutic effect. This time was different.

“Allan, baby, when are you coming to New York?” That was Lenny’s way of asking me to consult on a VIP patient very quickly. “Have you heard of Michael J. Fox? He’s having some kind of tremor, and I think he could use a bit more attention than he’s getting down here. I’m not sure what’s going on. Can you see him this week?”

Celebrity entertainers show up in almost every major medical practice. Some doctors collect them. At UCLA, I recall a whiff of testosterone in the air as a group of neurologists casually referred to the stars in their care. In the New York medical scene, on the other hand, A-and B-list actors occupy a middle stratum below financial giants and politically connected families. In the Big Apple, money talks louder
than fame, but in Boston this is all a novelty. When the dean of a medical school comes to my office as a patient, he usually arrives in an old Chevy wearing a sport coat with elbow patches. Same with the local pols. Even the tycoons in this town dress down.

In the same way, Michael had none of the star-making machinery about him: no entourage, no hovering manager, no bling, and no pretension. Just a regular guy. He made his own appointment, he came into my office at St. Elizabeth’s Hospital without fanfare, unslung a backpack from his shoulder, and casually tossed it on the couch.