Tourette syndrome kids now have answers. Former Royal Jim Eisenreich had few.

When former Kansas City Royal Jim Eisenreich was a kid, he didn’t know he had Tourette syndrome, or even what Tourette syndrome was. All he knew was that he was different, because his body would twitch, grunt and sniff spontaneously. And he didn’t know what that meant for his future.

“Would I ever be able to have a normal life?” Eisenreich said last week during an interview at his home in Blue Springs. “Which meant to me, getting a job, having a family. I didn’t know if I could do that.”

After playing 15 years in Major League Baseball, getting married and raising four kids, Eisenreich, 58, has answered all those questions. He’s also become a national ambassador for Tourette and a hero to thousands of kids who have it.

The story of Eisenreich overcoming Tourette to return to the baseball field as an adult is well-known. But last week he opened up with new details about what it was like to grow up with Tourette in the 1960s and 1970s, and how much things have changed for kids growing up with it now, especially in Kansas City.

Since 2014 the Tourette Association of America has designated nine hospitals across the country as Centers of Excellence for advancing the care, research and education of Tourette and other tic disorders. Children’s Mercy Hospital in Kansas City was added last year, becoming the association’s first center of excellence in the Midwest and the only one at a children’s hospital.

The nine-member Tourette team at Children’s Mercy includes neurologists, a psychiatrist, a family therapist and other professionals. Eisenreich said he’s close to the center’s co-director, psychiatrist Bob Batterson, and has watched it grow into a one-stop shop for families trying to figure out what’s going on and their options for limiting symptoms.

“I mean, we need it, you know,” Eisenreich said. “They just need answers.”

Keith Coffman, a neurologist and the co-director of the Tourette Syndrome Center at Children’s Mercy, said there’s still a widespread misconception that Tourette is a condition marked by involuntary profanity, which happens in 10 percent of cases or less. But it’s changing.

“That’s part of why the Centers (of Excellence) were created, to help change the public perception of Tourette so people who blink their eyes and clear their throats all the time are really the face of Tourette as opposed to what comedy movies have used for years to depict Tourette,” Coffman said.

Coffman said when he started practicing medicine about 15 years ago, the rate of Tourette and other tic disorders was believed to be about three people per thousand. It’s now about one person per hundred, due to better recognition of it.

He and co-director Bob Batterson, a psychiatrist, said much more is known about the neurological and hereditary components of Tourette and the strong correlation between Tourette and psychological conditions like obsessive-compulsive disorder and attention deficit hyperactivity disorder.

Caring for Tourette patients is still about limiting symptoms, rather than treating the syndrome itself. But Batterson said new medications, like Abilify, have shown promise in quelling the tics and there are also new non-drug options that use modified cognitive behavior therapy.

“Do the little Jim Eisenreichs of today have better treatment?” Batterson said. “I think it’s absolutely possible that they would. I think there’s at least better information out there.”

Social costs

Eisenreich grew up in St. Cloud, a city in central Minnesota about an hour north of the Twin Cities. He went to Catholic school, at a time when having tics could get you rapped on the hand.

“I still had nuns for teachers,” Eisenreich said. “Like the stereotype of nuns, it can be a little rough.”

He didn’t want to be a distraction, in school or in church. But he could not sit still. Sometimes his head jerked, sometimes he grunted, sometimes be blinked uncontrollably.

His parents took him to doctors, but Eisenreich said they just told him he had “habits,” and he and his family got accustomed to the tics. He made it through school because he was a good student and his parents were influential in their church and could run interference with the nuns.

But there were social costs.

“As a kid I never went to the movies,” Eisenreich said. “Couldn’t. I would have been the center of attention. So I didn’t go.”

Eisenreich maintained a measure of social acceptance in high school because he was a talented athlete who played football, hockey and baseball.

But the normal teenage insecurities were magnified by his tics. He said he wanted to date, but he was “scared to death” to ask anyone out. It’s one of the things he most regrets about his youth.

“My wife always asks, ‘So you never went to the prom or to homecoming?’” Eisenreich said. “No, I didn’t do that. Deep down, I might have wanted to. But I had to, like I said, hide and escape from that.”

Sports were his refuge and his ticket to St. Cloud State University, where became a baseball star. But he still wondered about his future. SCSU was an NCAA Division II team and playing baseball for a living didn’t even seem like a possibility until his junior year.

A Major League scout was in the stands watching one of his teammates that year when Eisenreich hit a grand slam off a left-handed pitcher from the University of Minnesota.

“He didn’t see the rest of the game, where I was 0-for-4,” Eisenreich said with a laugh.

Eisenreich and his teammate were both chosen in the 16th round of the Major League Baseball amateur draft. Eisenreich was picked by the Minnesota Twins, the team he grew up rooting for.

He was at his parents’ house when the Twins’ representative called. He went outside to the garden where his dad was working and told him as nonchalantly as possible.

“My dad’s eyes lit up and I joke that he set the long-jump record right there over the strawberry patch,” Eisenreich said. “It was like we made it. It wasn’t me, it was like we did. We got drafted.”

Sitting out

The next leg of Eisenreich’s journey with Tourette is probably the most well-documented.

The Twins were going through a rebuilding phase and after just two years in the minors, Eisenreich was called up to the big leagues.

Up until then, baseball had been his safe space, a place where he could focus so hard on the task at hand he would forget about his tics. Now it was his job — a job he did in front of thousands of people — and familiar insecurities started to creep onto the field.

“What happens if I play and they start to question what I do,” Eisenreich said. “Or what if it starts to affect my play?”

At first it didn’t seem like an issue. Eisenreich hit .303 over 34 games during his rookie season in 1982. But the tics were getting worse.

Batterson said researchers have determined that high-stress situations can cause a Tourette snowball effect: anxiety worsens the tics, the tics cause more anxiety and the cycle repeats.

Children’s Mercy has a therapy to stop the cycle, called Comprehensive Behavioral Intervention for Tics, or CBIT. Based on research published in 2010, the therapy teaches patients to recognize when tics are about to occur and counter them with techniques like deep breathing.

But Eisenreich didn’t have that, and the tics got so bad at times it felt like he couldn’t breath.

“As the first month of the season is going on, I’m playing pretty well,” Eisenreich said. “I was catching everything I was supposed to, I was hitting about .300, but I know when I’d go out in the outfield, I was getting scared because I felt physically bad.”

Everything came to a head during a three-game series in Boston, where he couldn’t finish two games. Media reports at the time said the heckling Boston fans, who sat close to the outfielders in Fenway Park, got to him.

Eisenreich said that was not the case, that no one in the outfield can hear what individual fans are saying anyway. But he was painted as a player who couldn’t take the pressure.

After the Boston series he flew back to Minnesota and spent two weeks at St. Mary’s Hospital getting a full physical and psychological workup.

That was the first time a doctor told him he had Tourette syndrome.

“It was a big weight lifted off my shoulders because they had a name for it,” Eisenreich said. “But probably even bigger was that, I was not the only one.”

The condition had been known for decades (it was named after a French physician who published a study on convulsive tic disorders in 1885) but it wasn’t well-defined or understood until almost a century later. Drug treatments weren’t available until the 1960s, when an antipsychotic called Haldol came on the scene.

Eisenreich was certain he had Tourette. All the symptoms seemed to fit. But other doctors diagnosed him with other things: stage fright, claustrophobia, agoraphobia.

“A whole bunch of phobias,” Eisenreich said.

According to a 1987 New York Times story, the Twins’ doctor wanted Eisenreich treated for performance anxiety with a drug called Inderal. After playing just 14 games over the next two years, he retired and went home to St. Cloud.

“I wanted to be healthy,” Eisenreich said. “I didn’t care about baseball.”

Eisenreich finished college, worked odd jobs for a house painter and played in an adult hockey league in the winter and an amateur baseball league in the summer.

He spent two years out of pro baseball, shuttling back and forth to St. Mary’s and trying different medications.

“I felt like I was a walking pharmacy,” Eisenreich said. “I’d try something for a little bit, two weeks, and if it didn’t do anything I’d try something else.”

Eventually, he found what worked for him. Meanwhile, the college teammate who had been drafted the same year as him had ended his playing days and moved into the Royals front office. He helped Eisenreich get another shot at the majors.

Eisenreich got his release from the Twins and the Royals signed him after every other team passed him over on waivers.

Back to baseball

Eisenreich said at that point the pressure was off, because he felt like he had nothing to lose.

“Anything I made was going to be gravy,” Eisenreich said. “If I stayed one year, two years, whatever, it was gravy. The joke I make is I didn’t really bargain for another 11 or 12 years. But that’s what I got.”

With his Tourette under control, Eisenreich seized his second chance. He played six solid seasons with the Royals, made it to the World Series with the Philadelphia Phillies in 1993 and won the World Series with the Florida Marlins in 1997.

The Phillies World Series team featured a colorful cast of characters that pitcher Curt Schilling once called “a bowlful of flakes.”

Eisenreich said one of the most colorful of them all, John Kruk, once paid him a compliment he had been waiting his whole life to hear.

“He said, ‘What’s it like being in this clubhouse with all of us whackos? You must feel like the most normal guy in the world,’” Eisenreich recalled. “That was my goal, that was my childhood dream — to be normal. And he just validated it.”

As Eisenreich’s national profile grew, he began meeting with local Tourette Association chapters at stadiums before games and talking to kids and their families about what was possible.

The kids would ask him about what tics he had and they would compare notes, amazed to find that they did many of the same things.

“We’d just sit there talking,” Eisenreich said. “It was the coolest feeling.”

Eisenreich said that over the years he has seen a dramatic shift in the social acceptance of not just Tourette, but all sorts of disabilities, especially among children.

He attributes it to cultural changes in a society that prizes uniqueness and individuality more than it used to. In the age of Facebook, YouTube and Instagram, being “normal” just isn’t as cool as it used to be.

“The kids (with Tourette) are normally OK,” he said. “It’s their parents who are scared to death.”

Coffman said the establishment of the Tourette centers has played a role in changing the culture. But Eisenreich deserves credit too.

“The other thing that has helped change the public perception is people who are affected by Tourette that have come out and talked openly about it,” Coffman said. “People like Jim Eisenreich and Tim Howard, the Major League Soccer goalkeeper, who have become very good advocates about Tourette and being able to achieve in light of having Tourette.”

Eisenreich said that once his baseball career took off, he felt a responsibility to make sure kids with Tourette didn’t experience the same pain and uncertainty he did.

“I thought, ‘OK, I’m playing for a reason’ and I don’t think it was just me being a ballplayer and earning a paycheck,” Eisenreich said. “There’s another reason the Good Lord has given me the ability to play and still play after missing all those years.”

This story was originally published October 20, 2017 at 7:00 AM with the headline "Tourette syndrome kids now have answers. Former Royal Jim Eisenreich had few.."