Getting Word Out About Tourette Syndrome
By Kim Folstad, Palm Beach Post Staff Writer
The Palm Beach Post
Tuesday, January 23, 2001
It's rough enough in real life.
The twitching and jerking and blinking and barking that
people with Tourette syndrome have to live with—and
explain—is enough to have to deal with every day.
But when the media get it wrong—focusing on the more
sensational symptoms, such as the uncontrollable shouting
of obscenities or racial slurs—it makes it even harder
for them to convince folks they're not freaks.
Still, they know: One popular and powerful television show
that gets it right is worth a thousand public awareness seminars.
Though the first case of Tourette syndrome was reported in
1825 by French neurologist Georges Gilles de la Tourette,
its symptoms still are often misdiagnosed and misunderstood.
Television gets the word out.
It worked that way with the detective show Quincy, M.E.
back in 1980, and L.A. Law a decade later, says Sue Levi-Pearl,
director of medical and scientific programs for the New York-based
Tourette Syndrome Association Inc. More recently, writer-producer
David E. Kelley has "embraced the disorder," working TS story
lines into Chicago Hope, The Practice and, for the past three
weeks, his Fox comedy, Ally McBeal. The character with TS,
played by actress Anne Heche, also will appear in the show's
February episodes.
Because Ally McBeal is a funny, sometimes "flaky" show,
the folks at the Tourette Syndrome Association expected a
quirky storyline this time around, Levi-Pearl says. But the
consensus is that so far, Heche's portrayal of a teacher with
TS has been a "fair, accurate and sympathetic" representation
of the neurobiological disorder.
And the hope is that maybe today, a few more people understand.
Maybe someone saw Heche's character on one or all of those
Monday nights, recognized her behavior and said, "You know,
that's what my son/my friend/my husband does."
Maybe someone said, "Hey, that's me!"
What are the chances of that?
Twenty years ago, Steve Horton was watching the Quincy episode
that dealt with TS, a disorder he'd never heard of before,
and he started crying. "There's something here," the 49-year-old
Port St. Lucie man remembers thinking to himself. But he'd
had so many different diagnoses over the years—mental
retardation, schizophrenia, "transitional reaction of adolescence"—he
wasn't sure that TS was a better explanation for his tics
than all the other things he'd been told.
Then his wife saw the same program a few months later. And
she was sure Horton had TS. He went to a doctor and, he says,
"finally got a name for what I had."
No one knows for certain what causes TS, but researchers
believe it stems from the abnormal metabolism of at least
one brain chemical, called dopamine. Other neurotransmitters,
such as serotonin, probably are involved as well, according
to the Tourette Syndrome Association.
TS is characterized by tics—involuntary and rapid
movements or vocalizations that occur repeatedly. Some people
shriek. Others wildly jerk their head or limbs. Many experience
only minor twitches, such as an eye blink or the need to clear
the throat. Only 15 percent of those with TS have the most
well-known symptom, coprolalia, which means they can't help
but shout out obscenities or insults.
Horton says he had them all. He also has a number of other
behaviors that often are associated with TS: obsessive-compulsive
disorder (OCD); attention deficit disorder with hyperactivity
(ADHD); bipolar disorder; and difficulties with impulse control.
"I had the whole shebang," he says.
But the tics were the most obvious problem. When he was
a boy, Horton says, his parents told him to be quiet at night,
but he couldn't stop making what he calls a "bullfrog" noise
that kept the whole family awake.
Eventually, his dad would come in with a belt, he says.
"That's so common with TS kids, to be disciplined for the
impulses."
In a way, though, he doesn't blame his parents for trying
to get control of him. "I put my mom through the wringer,"
he says.
Unfortunately, their methods didn't work. When he got older
and people made fun of him, Horton says, "I tore up places,
I got in fights constantly. I punched first and asked questions
later."
He dropped out of school and attempted suicide, once slicing
himself from head to toe with a razor.
Getting on with life
Doctors tried electroshock treatments and several drugs,
he says, including the anti-psychotic tranquilizer Thorazine;
Dilantin, which is used to treat seizures; and the anti-depressant
Tofranil. But nothing made a difference. And like Heche's
character on Ally McBeal, even when he was doing his best
to fit in—to get past the bizarre behavior and just
get on with life—he was scaring people.
People with TS often learn to suppress their tics, sometimes
for hours at a time, and Horton says he became an expert.
When he'd go out, he'd have the uncontrollable urge to shout
insults or curse words he knew he shouldn't. "When you see
a fat person, you're compelled to say something," he says.
"I suppressed all that or I didn't go out."
Horton still remembers staying in the family truck while
everyone else went into a restaurant. He went through a routine
that he calls "ticking it out," letting his limbs and his
vocal tics fly. "One time I looked over and saw a woman staring
at me. She was scared to death.
"I was embarrassed and afraid and thought I would be locked
up," he says. And he was. Not that night, but a few times
in his life, either because he'd gotten violent or tried to
hurt himself.
When he finally was diagnosed with TS, Horton says, it changed
his life.
Not right away, though.
For a while, he was just so happy to know what he had, he
reveled in the condition. He wore a Medic Alert bracelet and
necklace, and carried a card in his wallet that said he had
TS. His then-wife pointed out to him that maybe he was a little
too into having TS, and Horton says, "She was right."
It took a while, but he decided he wouldn't let the disorder
be a "badge of honor." He didn't want to be like the "victims"
he met at some support group meetings, people he says collect
excuses along with their disability payments from the government.
"They're in there telling their stories and their dramas,"
Horton says. "But they don't want help."
He did. But, he says, he had to do it on his own. The medications
doctors were prescribing for TS weren't working for him. He
developed his own program, a combination of diet and exercise,
rest and work that he calls "A Balance in Life." He hopes
to put out a video about the program and his life in the next
year or so.
In the meantime, Horton keeps plenty busy. He runs his own
commercial cleaning business and works seven days a week.
("An idle mind is a Tourette syndrome person's worst enemy,"
he says.) He drives his own van—something he was afraid
to do when he was younger and his limbs would jerk so hard,
he thought he might lose control of his car (which happened
to the Ally McBeal character). And he doesn't get into fights
anymore. (Making his mom a happy woman.)
Meet him now, and you'd hardly notice the tics. "I'm 90
percent under control," Horton says.
Still misunderstood
Unfortunately, he adds, things haven't changed that much
for young people with TS. Though it's estimated that 200,000
people in the United States are known to have the disorder,
TS still goes undiagnosed in many cases.
"When you're a kid and you don't know what's wrong with
you, you think you're possessed," he says.
Or your friends do.
Like Horton, 12-year-old Joey Krystof has a multitude of
disorders, including ADHD, OCD and bipolar disorder. But it's
his tics that made the kids at his Boca Raton school wonder
why he was making faces at them in class.
Even with medication, he sometimes loses control of himself
for a few seconds, or minutes—or longer, says his mother,
Mindy Krystof. Sure, he's learned to suppress almost all of
his tics, at least in public, in the two years since his TS
was diagnosed. (It took several years before a pediatric specialist
at Miami Children's Hospital finally gave his jerky arm movements
and vocal outbursts a name). But at Joey's age, kids pick
up on every little thing.
His mom and dad brought a book to his school called Matthew
and the Tics, and after they read it, his classmates seemed
to understand. "Adults are still stereotyping Tourette's with
the cursing, but kids ask fabulous questions," Mindy says.
So do parents when they have to.
Mindy has become an expert researcher and advocate because,
she says, "Nobody's going to help my son but me." She is a
member of the Exceptional Student Education Advisory Committee
at school and a support group leader for the Tourette Syndrome
Association in her area. She's a stay-at-home mom now, because
she lost so many jobs while taking care of Joey.
But she still doesn't always know how to deal with his disabilities
or how to plan for his future.
Joey talks about driving someday, but she doesn't know if
it will be safe. She can't quite picture him going to college
because of the TS and his other disabilities. And she knows
relationships will be difficult. Right now, if Joey really
needs to let loose with his tics, he does it at home, she
says. It's his safety net.
The outside world? Not so much.
She's optimistic, but it's tough to tell if people ever
will really get what's going on with her son. And there's
no sign that will change.
She rarely sees anything about TS on TV, she says. And when
she does, it's not always the sweet and sensitive portrayal
that's been on Ally McBeal these past few weeks.
Mindy wrote a letter to talk-show host Maury Povich after
he did a program on TS that featured "all the worst-case scenarios"
-- people whose symptoms were frighteningly out-of-control.
She was glad he was trying to educate the public, she says.
"But imagine what message that sends."
Getting the word out
The message.
Mindy Krystof had heard of TS, but she knew little about
it until she came across the label while trying to find the
source of her son's unusual tics. And it's still hard to find
up-to-date information.
On a scale from 1 to 10, says Marilyn Blackman of Royal
Palm Beach, the Web sites with information on TS "rate about
a 2 on what's going on." Blackman's son, Steven, was diagnosed
with TS at 15.
There have been a few good movies and TV shows about the
disorder through the years, she says, citing the same Quincy
episode that Steve Horton speaks so highly of. Unfortunately,
she says, the media probably have done more harm than good.
"It's still the same. People are puzzled."
And that hurts her.
Until her son was diagnosed, she and her husband sometimes
punished him for what they thought was simply outrageous behavior.
"I feel so guilty, I'm up every night," she says.
Steven is 45 now. He's a paramedic in New York. And he's
tired of talking to people about his TS, Blackman says.
But it still makes her cry, what her son went through, and
it makes her want to do something for the next generation
of kids with the disorder.
Her answer? She wants to go to schools in Palm Beach County
and show a documentary made in 1978 titled Tourette Syndrome—The
Sudden Intruder.
There are newer TV programs and movies out there about TS,
including a critically acclaimed motion picture released last
year called The Tic Code. But The Sudden Intruder—made
by the Neuropsychiatric Institute at the University of California
Los Angeles and narrated by actor Jack Lemmon—is still
the best, Blackman says. "It's short, sweet and to the point."
When she first got a copy of the film, years ago in Monticello,
N.Y., she took it to classrooms to educate teachers and students
about the disorder. Like Krystof, Blackman was amazed by the
intelligent, compassionate questions her son's classmates
came up with.
Now, Blackman says, she wants to do the tour again in Palm
Beach County. Anyone who's interested can e-mail her at blackie851@aol.com.
"We're retired now and I just can't sit home and play cards
with all these women here when there's something important
to do," she says.
When she showed The Sudden Intruder to school officials
in New York, they cried, Blackman says.
She doesn't care if people cry this time. She just hopes
they listen to her—or whoever brings the message.
"(TS) has been so misunderstood for so long," Blackman says.
"No matter how we do it, we just have to keep getting the
word out."
kim_folstad@pbpost.com
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This page was last updated
August 7, 2006
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