A Private Struggle

Behind the wheel of his sporty silver car, with Steely Dan’s “Reelin’ in the Years” blaring from the speakers, Alex Greene taps his fingers like a typical fan. What’s not typical are the piercing, almost otherworldly, yelps coming from deep in his throat.

That’s not all. As he drives, he pushes and pulls at the steering wheel with his left hand, jams both elbows into the leather armrests so forcefully they leave impressions and periodically squeezes his eyes shut.

Only in such private moments can he give full reign to the quirky vocal and physical tics that define Tourette syndrome.

Greene is a sociable man--a high-powered Manhattan investment banker and volunteer firefighter, an attentive husband and dad, an all-around good guy who thrives in the company of others. But his private struggles--with neurological symptoms that can be distinctly antisocial--create a tension that underlies nearly every moment of his waking life.

The roughly one in 1,000 people who have Tourette syndrome lack an internal filter. They’re full of compulsive energy; gestures, words and sounds that others might stifle, they let fly.

The disorder has entered the modern vocabulary through the power of popular culture: Characters with Tourette syndrome have been woven into plots of “The Practice” and last season’s “Ally McBeal.” (Both were creations of David E. Kelley, whose former business partner has two sons with Tourette.)

Yet Tourette remains highly misunderstood. The inadvertent cursing people commonly associate with it affects fewer than 15% of patients (who may also make socially inappropriate gestures). In Greene’s case, such sounds disappeared in his teens, and, he says, “I never had it that bad.” He never barked; he wasn’t a social outcast.

Tourette symptoms tend to wane with age. And adults often learn compensatory behavior. There are Tourettic athletes, musicians, writers, surgeons, financiers.

Greene had a supportive family, but it’s his inner strength, and endless determination to make his renegade body obey, that may account for his successes.

He battles, for starters, the nearly unstoppable urge--as reflexive as scratching a mosquito bite--to press his fingers ever tighter against an object, be it a pencil or a wine goblet. At dinner parties, his compulsion can leave him with a handful of glass shards, feeling stupid and embarrassed. “I take great pains to hold it in a certain way--hold the stem or grab the base--or exchange it out of fear I’ll shatter it.” At times, the urge has extended to biting down on the rim, sometimes breaking it. Now, he says, “I’m very careful to sip gingerly.”

At high-stakes business meetings, he uses sheer force of will to suppress the involuntary urges that are only ratcheted up by the pressure to appear in control of his body. He holds on until he can step out for coffee or a bathroom break and release the pent-up impulses “in the privacy of my own person.”

Greene’s Tourette is accompanied by two often-associated conditions: obsessive-compulsive disorder, which brings intrusive and sometimes negative thoughts; and attention deficit disorder, which mars his concentration.

“I bought the option package,” he jokes.

Together, the three make him a man in continuous motion, inside and out. In the course of conversation, he will stretch his neck to the side, tense muscles in his back and legs, and dig his heels into the floor. All the while, he’s tapping his fingers constantly to the music playing in his head--a never-ending internal musical soundtrack he calls “the loop.”

“I’m a walking Wurlitzer,” he says. “I hear it all day long. Depending on my mood, it’s either invasive or sometimes an accompaniment. I’ve probably heard ‘Sweet Home Chicago’ by the Blues Brothers 250 times today.”

Ask him about particular tics, such as craning the neck or exaggerated blinking, and the suggestion sends him into a flurry of movements--a Tourette phenomenon.

When he’s fully engaged in activities that demand concentration, the tics tend to disappear. But stress or self-consciousness worsens them, as can extreme fatigue. So can intense elation, says Greene. “I remember ticcing in my wedding video.”

It’s taken most of his life for Greene, 42, to come to terms with the disorder that appeared during elementary school, when doctors tended to treat it as a psychiatric illness. He spent most of his adult years fighting to keep Tourette from dominating his existence. He took pride in suppressing the tics. He pushed the disorder as far from his consciousness as he could. He didn’t tell employers or the guys at the suburban fire departments where he’s volunteered. Until he met his wife, he made excuses to dates about his constant flexing by saying he had a bad back.

“From 17 until when my son was born, I stuffed it away like you do with your crazy aunt in the basement,” he says. “Much of this was parked in very deep storage.”

Only in recent years, has he come to understand what Tourette has really meant to him.

‘Oh, God. That’s Alex.’

Ellen Greene, 68, recalls the precise time she realized something was wrong with her son.

It was during a vacation in the Catskill Mountains. Alex, then about 7, was playing with other children.

“I remember being quite a distance away and hearing a sound,” she says, trying to summon an imitation of the penetrating yelp that rang out in the mountain air, cutting through the normal childhood noise. “It was hundreds and hundreds of feet away. I thought to myself, ‘Oh, God. That’s Alex.”’

Several years later, while reading the New York Times, she saw a commercial notice that asked, “Do You Know Anyone Who Makes Noises?” She dialed the Tourette Syndrome Assn. number that accompanied the notice--and began a family medical journey that summons painful recollections to this day.

Even though she and her husband knew they were doing the best for Alex, she still cringes at those years that medications turned their vivacious older child into a zombie. Once, the drugs induced a seizure that left his body completely rigid, until the doctor arrived with an injection to relax his muscles.

“It was probably the most frightening experience of my life,” Ellen recalls.

Hints of Tourette may have been around since Alex’s earliest childhood, she says.

“When he was 2, 3 years old, he would clench his fists and put his arms up like in surrender, elbows bent, then go ‘Uuummmhhhhh’ with his mouth open,” says Ellen Greene, now a magazine editor in Manhattan. “We gave it a name. We called it a ‘yobble,’ between a yawn and a gobble. It was nothing we gave any significance to.”

In subsequent years, though, she and her husband, George, asked themselves, “Could this have been the very first sign?”

For Ellen, whose uncle was Erik Erikson, the pioneering psychoanalyst who specialized in childhood development, the vision of little Alex struggling with tics still brings tears.

“It kills me. Anytime. It hurts. Absolutely that will never stop,” she says.

There were his sniffs and snorts, the incessant tapping that made him a natural drummer, the knuckle-cracking--so hard at times that he taped his swollen fingers for relief--and always the flexing of muscles in his back.

Given those indelible images, she’s all the prouder of what her son has made of his life; there was a time when she wasn’t sure what his future would bring.

Now she marvels at how far he’s come. “Who expected he’d have all this strength?”

Ellen and George, 76, who has been a singer, writer and stockbroker, acknowledge that Alex’s Tourette may be rooted in some of their neurological anomalies. Ellen has mild eye tics, while George at age 5 developed a short-lived tic disorder called St. Vitus’ Dance, causing him to move his head back and forth. He later developed a stutter. As he puts it: “We all have a little something.”

As parents, they took great pains not to make a big deal of the Tourette. When they wanted to know how Alex was feeling, they’d ask, “How’s ‘Gilles’ today?” It was a wry bow to Georges Gilles de la Tourette, a French neuropsychiatrist and friend of Sigmund Freud, who in 1885 described several cases of patients with involuntary body movements and vocal sounds, who often mimicked or repeated others’ words or gestures.

George recalls the early coprolalia--involuntary cursing--and how Alex consciously tried to temper it by leaving off the first letter from particular curse words to make them sound more acceptable. One Christmas vacation, while crossing a street in Palm Beach, Fla., Alex, who was then about 7, looked up and said, “uck.” “’Papa,’ he asked, ‘can I say that word?”’ and then went on to say “uck, uck, uck” for a short time.

Alex has purged most of the unpleasant scenes from his memory. “I had a rich and fulfilling childhood,” he says.

Most of the time, his best friend recalls, Alex was just plain hyper.

Outbursts didn’t seem out of the ordinary in the fourth-grade class where the teacher ridiculed Alex, says his best friend Steve Potolsky, although Alex’s tics sometimes stood out: “I remember these ... facial distortions: His shoulders would jump up, his face would tic a little bit, he’d wrinkle up his face.”

But, Potolsky says, “from my standpoint, it was Alex I was interested in, not these things. After a while, I didn’t even notice them to a great extent.”

From what Alex remembers, doctors didn’t do much for him.

Early on, his parents took him to see the late Dr. Arthur K. Shapiro, a New York psychiatrist, who along with his wife, Elaine, helped change the entrenched medical view of Tourette syndrome as a psychiatric disorder, one treatable through psychoanalysis and impulse control--measures that typically failed. The Shapiros redefined it as a neurological problem involving brain-signaling chemicals called neurotransmitters, particularly one called dopamine. Alex remembers not getting along very well with Shapiro, but no longer recalls why.

He has only bad memories of the medications and in his late teens abandoned both the doctors and the drugs.

The cure had become worse than the illness.

For the most part, Alex was a well-adjusted, industrious child who channeled his considerable energy into sports, music and business--enduring pursuits requiring the discipline that may account for much of his success.

At George Washington University in Washington, D.C., he juggled classes, social life and several jobs, including one as a hotel bellman. He had his routine down so well that he would wear wingtip shoes to class, then proceed to work. “Wingtips” became an enduring inside joke among friends and family members, perpetuated for years in his license plates.

After graduation, he surprised everyone by choosing the buttoned-down banking profession, even though he was wearing his hair long.

When he began, he says, “I wasn’t the sharpest tool in the shed. I wasn’t very sophisticated in terms of finance, business understanding, in terms of being worldly.”

But time and some crises in his 30s helped build his self-confidence.

In particular, several periods of self-examination and counseling helped him to understand that he “saw the world in a convoluted way,” often doubting himself or fearing that he’d made irrevocable mistakes. With therapy targeting the anxiety and obsessive thoughts that often are part of Tourette, that prism of distortion fell away.

“I realized I was a pretty smart guy and I had been hiding a lot of things and had been afraid of my weaknesses,” he says. He decided then to play to his strengths. “I joke a lot. I use a lot of Yiddish. I’m a good listener.”

Today, he says, “I’m secure.”

Still Searching for the Cause

Since Alex was diagnosed, the medical world has made great strides in identifying and treating Tourette.

In the continuing search for genetic underpinnings, researchers are closing in on regions of two chromosomes, with other areas likely to be implicated as understanding of the human genome progresses. Some see potential roots in interactions between genes and the environment. Others suspect autoimmune involvement, possibly triggered by strep infections.

Dr. James Leckman, a Tourette specialist and director of research at Yale University’s Child Study Center in New Haven, Conn., is convinced the higher occurrence in boys than girls--Tourette affects three to four times as many boys as girls--stems from boys’ exposure to high testosterone levels in the womb as their brains are developing.

Today, doctors recognize that Tourette comprises a range of treatable conditions and many focus their treatment on the related conditions. Stimulants like Ritalin can blunt the hyperactivity without worsening tics, while newer antidepressants such as Prozac, Paxil and Zoloft can ease the obsessive-compulsive disorder.

Drugs like Haldol, while lessening tics, can create depression, and cause weight gain, social phobia and body stiffness, although some newer medications are well-tolerated by many children.

Medication may be the solution at particular times, says Dr. Leon Dure, a Tourette specialist at the University of Alabama in Birmingham. For example, 7-and 8-year-olds often aren’t bothered by tics, but may want medications in adolescence, when tics bring stigma.

Psychologists can help such youngsters feel less isolated and get along better with their families.

That children today with Tourette are better off than their counterparts decades ago became clear to Dure at a support group meeting that drew men in their 50s and one young boy.

“It was amazing,” Dure said. “The men told this little boy: ‘You are so lucky. You know what you have. None of us knew what we had. People thought we were crazy, weird and eccentric.”’

It takes a long time to overcome stigma and stereotypes, says Dr. Cathy Budman, a psychiatrist and researcher at North Shore University Hospital in Manhasset, N.Y., who says the best intervention is educating the child, family and school.

Tourette patients treated long ago “grew up with this sense they were very defective,” she says, but the majority of people with Tourette have mild symptoms. “In the scheme of things,” she says, “this is something you can live a pretty good life with.” For those Touretters with severe symptoms, the social challenges can be greater.

How Tourette Can Enhance Lives

The neurologist Dr. Oliver Sacks, who has written extensively about Tourette in several popular books, has looked at how Tourette can enhance lives. He says the internal phenomena “tend to be vivid, heightened impressions and impulses of many sorts,” often involving “a sort of playing with limits, socially, morally, intellectually, physically, a sort of risky adventurousness.”

The lack of inhibition can confer “a rich, surprising and sometimes associational freedom” upon those with Tourette.. A drummer Sacks treated years ago harnessed “Tourettic gestures for Tourettic improvisations.”

Leckman speaks of a tae kwon do world champion convinced that Tourette provided his willingness to do things over and over, and a pro basketball player’s desire to practice free throws “until he could get the same sound as the ball swished through the net.”

Similar discipline helped Greene, whose acceptance of Tourette has come with age and with the decision to become a father.

“My wife and I were making a very real decision--we were accepting the possibility that in having children, we would be having children with Tourette. The notion of hiding from Tourette was incompatible with my view of the responsibilities of being a parent,” Greene says. He felt that his own experiences prepared him to tackle head-on any diagnosis in a child.

After seeing a genetic counselor, he and his wife, Lori, “decided to go for it.”

Besides having two children, Greene has gradually come to terms with what it means to be more open about the Tourette he had long tried to hide from the rest of the world. Another step was becoming more involved with the Tourette Syndrome Assn.; he’s on the national board and finance committee.

Another was revealing his Tourette to his children.

Although the kids knew their parents were active in the association, “we’d never talked about the fact the reason we’re involved was because of me.”

During the course of a dinner a little over two years ago, he asked if they knew what Tourette was, and prompted by their response, “I told them that I had it and they were not startled. It was a real defining moment for me.”

Greene isn’t very comfortable being singled out as someone who has triumphed over Tourette: “Plenty of people have endured more,” he says.

“I am not a success story; I’m successful. The success story is all the people who have Tourette [whose symptoms] are more pronounced, more socially unusual--how they get through their lives.

“I spent years hiding as a result of Tourette. I was afraid of being denied the things I wanted to do because of Tourette: being on the Fire Department, being accepted at work, being insured,” he says. “Life is about confronting things, not walking away. Tourette has taught me something about persistence.”

And acceptance.

“Tourette is as much a part of me as anything else. My ‘Gilles’ is just part of the package.”