Reaching Down the Rabbit Hole (22 page)

“Call me Mike,” he said, holding out a hand. There was no mistaking him—it was McFly all right.

“Doc, you gotta help me fix this,” he said.

“What’s the problem?” I asked, even though I had already noticed the tremor in his left hand and arm.

“You want to know what the problem is? I’ll tell you what the problem is. I can’t read on the can in the morning. I can’t read to my kid at night. I can’t hold the damn book still. Really, that’s all I want. I just want to be able to hold the book still so I can read to my son.”

“That’s all you want?”

“No. That’s the obvious problem. What I really need is . . . I want you to tell me what the deal is. No one else has. I want to know everything that comes with this, or that’s going to come.”

He was wearing jeans and sneakers, a logo sweatshirt, sleeves rolled up to the elbow with blue oxford cloth cuffs peeking out. For all I knew, he could have skateboarded down the street behind the hospital before being ushered in via the back way to my office. No one was supposed to know he was here.

“Tell me about the medications you’ve been taking.”

“The Sinemet helps a lot,” he said, “but it wears off pretty quickly, and it’s beginning to make my hands and neck move around when I don’t want them to. The Artane doesn’t work at all for the tremor. Until now, my strategy has been: ‘Just tell me what drugs I need to take to make this go away,’ but it’s not working anymore.”

“The tremor is not going away?”

“No. So I need you to tell me: What is it, really? What are my options, really? What’s my prognosis, really? What should I do?”

His concern was justifiable, and despite his initial plea, reading to his son was the least of his worries. No one wanted to see Marty McFly or Alex Keaton or Michael Fox lose control of his body, and he knew it. That would be a tough sell in prime time.

The irony was not lost on either of us that Michael had already acted out this scenario in
Teen Wolf
, a 1985 film in which he played a high school senior who finds himself turning into a werewolf. The condition, he discovers in Act II, runs in the family (unlike his Parkinson’s). In the film, he uses his wolf skills to his advantage, but in the end he decides to succeed on his own merits. He just wants to be himself. What he was telling me at our first meeting, in essence, was that he wanted the same thing.

“Doc, you gotta find a way to keep me on television for a couple more years. If you do, I’ll give you a Ferrari.”

So I did, which got me in some hot water, and no Ferrari.

Twenty years after my first meeting with Michael, I find myself sitting with Tikvah in my office. She is reminding me how it all started for her.

“The first thing I remember in retrospect is my pinkie finger started to wiggle. I knew it was PD right away. I’m always looking for trouble. I was geared to things medical. I went home, took a bath, and the finger was still going. So I knew. That was about twelve years ago. I did okay for a while. I could run to the subway, I could multitask. When I got the diagnosis on 9/11, I was very frightened. I said to myself, if anything goes bad, I’m cutting my throat. But it didn’t hit me because I didn’t feel the symptoms. They weren’t painful.”

“So now, a dozen years later, what is the most troubling aspect?”

“Dependence, slowness, clumsiness, no energy, mostly those things,
and my mood. My mood really changes. Also, now I’m starting to have to go places
with
somebody, not on my own.”

“Is it possible to articulate the sensation of the slowness, of the rigidity, of being frozen?”

“The physical stuff and the emotional stuff are very connected for me. I can get stomachaches, and think that I didn’t take my medication correctly. Then I run around, and that makes it worse. It feels embarrassing. Especially my speech. I can be in midsentence, and I cannot finish the sentence. I can’t find the words, and I don’t know when they’re going to come. I’m worried people will think I’ve been drinking. So if I go somewhere in the morning, I have to calculate everything, anticipate everything because of that.”

“Is it word finding only?”

“No. It’s both slowness and word finding. I could lose my speech and my vocabulary at any time. Sometimes people look at me like: ‘Are you crazy?’”

“And with the Sinemet?”

“I feel almost normal, except that I know I have PD.”

Ever since the name of the surgeon of Hoxton Square was attached to the disease over a century ago, there have been precious few breakthroughs in the treatment of Parkinson’s—two to be exact, each one a game changer. The first was the accidental discovery that the surgical destruction of a structure known as the
globus pallidus
could short-circuit the signals that caused Parkinsonian tremor and rigidity. Irving Cooper, a young neurosurgeon toiling in semi-obscurity in the Bronx, perfected the technique—called a pallidotomy—in the early 1950s. His results were so dramatic and unexpected that he was accused of faking his data, and was nearly drummed out of the profession. But by the mid-1950s, the pallidotomy became the standard of care. Over the next decade, Dr. Cooper and a few other neurosurgeons experimented with alternative lesioning techniques, notably the thalamotomy—the destruction of a pea-sized portion of the thalamus,
another deep-brain structure—that also proved effective in eliminating tremors. Then one morning in the fall of 1968, after having performed over six thousand of these procedures, as many as six per day, Dr. Cooper walked into his clinic and announced that all such surgeries would stop, effective immediately. The reason was the arrival of a nonsurgical alternative: the drug called L-dopa, the secret ingredient of Sinemet.

Sinemet is in many ways a wonder drug. Its origins go back to 1967, when a Harvard-trained physician named George Cotzias found that administration of the chemical L-dopa in carefully timed doses relieved most Parkinson symptoms. L-dopa, or levodopa, crosses the blood-brain barrier and is converted into dopamine, the neurotransmitter whose curtailed production is a signature feature of Parkinson’s. Over the next decade, a series of hybrid drugs that combined L-dopa with a targeted delivery agent hit the market. One of these was Sinemet. Although it had only a modest effect on tremor, it became the drug of choice for most other Parkinson’s symptoms. With surgery no longer considered optimal, or even advisable, the question for neurologists boiled down to this: for any given patient, which of the L-dopa drugs should be chosen, how big should the doses be, and how frequently should they be given? To figure that out, I sometimes had to dabble in a little field research.

The Teamsters at the Chelsea Piers were not so much intimidating as annoying. It was clear that they felt entitled to scoff at anyone who was not in the “business,” meaning show business, and meaning me. Even though I was expected at the television studio, it took three phone calls at the gate to finally shove my way past the muscle.

For a sophisticated and high-budget television show, the set of
Spin City
looked thrown together, rough around the edges. But edges don’t show up on camera. The soundstage was on my left as I entered. A brightly lit, cavernous space, it contained only one enclosed room, a kind of trailer. Michael J. Fox was in it, half lying on a forlorn leather
couch in spartan surroundings. There was a small carpet, a wooden chair off to the side, a simple desk, a small fridge, and little else. He offered me a club soda.

I had come to talk about his medication schedule. It had been two years since he had shown up in my office, and he was now starring in a new sitcom, his condition still a tightly guarded secret. I was there to see how we might organize his meds for maximum benefit while they shot his scenes.

When I walked in he was in an “off” period, his speech monotone and mumbly, his face expressionless, his movements reluctant, and his posture poor. We discussed the Sinemet not in terms of doses, but colors. He knew that if he took a full blue, he would be waving his arms like a wild man within twenty minutes, and would be of no use on the set. On the other hand, half a yellow would not give him enough fluidity or the full range of expression that he needed to play his role. That’s the downside of Sinemet: the trade-off between tremor and un-seemly dyskinesias. The drug provides an inverted arc of an effect: a big shot of L-dopa knocks out the symptoms, affording a twenty-minute window of fluidity and fluency. If too much is taken, the dose will overshoot the mark, producing the wild gesticulations and head twists. When the L-dopa begins to wear off, the descent is even quicker: a rapid reentry into a state of torpor marked by a frozen affect, the opposite of Michael’s on-screen persona.

I thought that one yellow followed by another half-yellow, twenty to thirty minutes later, would get him into the comfort zone without shooting him into the twilight zone. He had been experimenting with something close to this, and it seemed like a good plan. I hung around to witness the effect, and it worked. He could sense that the Sinemet had kicked in when he felt a vague background aura of charged energy, and he emerged from his dressing room and ran through his scenes with no tremor and only minimal dyskinesia. I could see his actorly control over every posture and movement, how he disguised small dyskinesias behind the frenetic mannerisms that had become
part of the character he was playing. I kept an eye on my watch during the shooting sequence, and at about eighteen minutes into it, I could see that he was going to crash. Michael sensed it too, and strolled off the set with a minute or two to spare, with no drama, as calmly as if it happened five times a day, which it did. After nailing his final line, he returned to the little room for a between-rounds conference with his corner man, the keeper of the yellows, blues, and other colors of the dopamine spectrum.

“What does it feel like when it wears off?” I ask Tikvah about the Sinemet.

“I feel agitated, with stomach pain. Then it knocks me over the head, and I have no energy. That’s when I know the meds are wearing off. I have no choice, and I have to sit down, and an hour or two later I’ll still be sitting there, wondering how I got there.”

“If you had patients with Parkinson’s, how would you advise them?”

“They have to rest. They need to change their self-image. The whole family does. You already know that the disease doesn’t just affect individuals, it impacts the entire family.”

I have known Tikvah’s husband Saul for decades. I know their son and daughter, and I know how unhappy her illness makes them. It comes out when Saul tells me how sad he is for her, and how difficult it is to accommodate not just her slowness, but the daily struggle she endures. Their son can roll with it, but their daughter initially had a contact aversion to the disease. She’s scared, she doesn’t know what to do about her mother, what to do when she gets confused, what happens when she’s really disabled, and I am inferring from my experience with other families:
Is it going to happen to me?

“Does it help that Michael J. Fox represents the disease publicly?” I ask her.

“Oh, yes. I have a lot of respect for him. He just goes out and does what he does, and doesn’t care what anybody says. That’s the sense I have of him. And having him as a spokesperson, he’s a regular guy,
not some esoteric guy. That makes a big difference. He has no shame about it, which is great.”

I hear the same sentiment from a lot of my patients for whom self-consciousness is part of the Parkinson’s struggle. They all say that it helps to have Michael out in front of them. When he announced his condition to the world in 1997, he told reporters that he planned to act for three more years. I told him he was probably good for another ten. In fact, he is still going strong, three Golden Globe and eight Emmy award nominations later. But it has taken more than Sinemet.

Fox called his book
Lucky Man
, and he is lucky in several ways. Not many people could get such a diagnosis at age thirty-one, and over the ensuing two decades stay at the top of their profession, win awards, and thrive in a celebrity fishbowl. Yet he may not quite appreciate just how lucky he is in one sense: no one else with a bread-and-butter Parkinson’s could have lasted as long as he has. I give him credit for his fortitude, and he deserves it. Managing that kind of medication schedule requires discipline of the highest order. But it has also required one more thing that Michael could not control: remaining medication-responsive ten years out from initiating Sinemet. That’s a rarity, not unheard of, but unusual.

In 1997, I first broached the possibility of brain surgery with Michael. At that time, neurosurgeons in Europe were experimenting with an extension of the Cooper procedure in which, instead of merely making a hole in the thalamus or globus pallidus, they placed an electrode at the site, and ran wires from the electrode through the skull to a small stimulator, essentially a pacemaker, implanted under the collar bone. It was called deep brain stimulation, or DBS. At that time, the technique and the equipment were primitive by today’s standards, and not yet approved by the FDA. The procedure offered little in the way of customization, and Michael was adamant that he did not want wires coming out of his head. But he was still a good candidate for the old Cooper procedure—the lesion without the implant—and this made sense given his unique needs and the time
frame. He was still dealing mostly with tremor, something a thalamotomy could handle very well.

What’s more, during the surgery, we could test whether the lesion would work before having to make it. Of course, once the hole was made in the brain, there was no filling it in, it would be irrevocable. Only one question remained: I needed to find out whether, if Michael had the thalamotomy now, he would later be able to get a deep brain stimulator. I talked it through with some top-flight neuroanatomists in Boston, as well as two of the major neurosurgeons in Sweden, where the field was quite advanced. What would happen in someone who had a hole in their thalamus, who later got an electrode put in the globus pallidus or subthalamus? It may sound wonky, but everything was at stake.