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Woman with tourette's says 'Biscuit' 16,000 times a day

1:27 PM, Sep 28, 2012   |    comments
Tourette's sufferer Jess Thom is the author of "Welcome To Biscuit Land: A Year In The Life Of Touretteshero." (Laura Page/RexUSA)
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by Susan Donaldson James, ABC News

Jessica Thom, a sassy and smart 32-year-old from London, says the word "biscuit" 16,000 times a day. She also involuntarily bangs her head against the wall, beats her chest and when least expected, lets out a guttural sound or swears.

She describes her love-hate relationship with the disabling disorder Tourette syndrome in a new diary-style memoir -- "Welcome to Biscuit Land: A Year in the Life of Touretteshero," available in October.

In Britain, "biscuit" means "cookie," but Thom insists she is never really thinking about eating when she has her involuntary outbursts. Her brother-in-law recently took note of her verbal tic and counted her saying it 16 times a minute, or about 900 times an hour.

In one day alone, she has hit herself on the forehead with a phone, a carton of apple juice, a set of keys, a toilet roll and a strawberry.

Thom said that for years she viewed Tourette's as a liability, but now she sees it as a strength. Comparing herself to the film character Bridget Jones, who laughed at her quirks and foibles, Thom recounts hilarious, but also heartbreaking stories of her encounters with a world not used to her social outbursts.

"I know I tic all the time and it sort of pisses me off -- biscuit, biscuit," Thom told ABCNews.com. "But if I paid attention to it all the time, I wouldn't get much done. Sometimes with the Tourette's, I get overloaded -- biscuit, biscuit. I'll punch myself in the chest hundreds of times a day and my legs move erratically about."

"The challenges are dreadful, but it has helped make me a more resilient and empathetic person," she said. "You can overcome most things, and I have become more confident."

Tourette syndrome is a neurological disorder that is defined by multiple motor and vocal tics lasting for more than one year, according to the National Tourette Syndrome Foundation. The verbal tics can include grunting, throat clearing, shouting and barking.

It was named for a French neuropsychiatrist, Gilles de la Tourette, who assessed the disorder in the late 1800s. He did not have the disorder, so it is "Tourette," but colloquially, it's called "Tourette's."

The first symptoms, usually before the age of 18, are involuntary movements of the face, arms, limbs or trunk, such as kicking or stomping. They are frequent, repetitive and rapid. The patient cannot control these movements and they can involve the whole body.

Fewer than 10 percent of all patients swear or use socially inappropriate words.

Thom is "clearly an outlier," according to Dr. Jonathan Mink, chief of pediatric neurology at Rochester University, who sits on the board of the Tourette association. "She is atypical and at the extreme end of the spectrum."

"She is probably not thinking 'biscuit' all the time," said Mink, who does not treat Thom. "It's kind of an urge of need to do it. A lot of people say it's like an itch that needs to be scratched."

He estimates one in 100 children has some degree of Tourette syndrome, a disorder that is little understood and whose cause likely has a genetic link.

Many patients also have symptoms associated with attention deficit hyperactivity disorder and obsessive compulsive disorder.

"The majority of kids, even those bad enough to seek treatment, are likely to have their tics diminish or go away," said Mink.

Habit reversal therapy -- teaching a person with Tourette's to hold their breath, for example, instead of saying the repeated word, can sometimes help. Antidepressants are used to treat associated anxiety.

Thom, who has had tics since she was six, has used both therapies, but no avail.

"I tried instead of banging my chest to try to stretch my arm out, but it didn't work for me," she said.

Thom does take muscle relaxants but other medications have caused undesirable side effects.

She writes that the physical tics make her feel "a bit like suddenly being wrenched from the inside or as if someone's put itching powder in my blood."

Thom lives with a roommate, but she concedes there is still "quite a lot of risk." She recently fell in the shower and now uses a wheelchair.

The intensity of the disorder "fluctuates and changes," according to Thom. "Just when you think you got one thing set with your tics, something else comes up."

Involuntary Swearing Is a Challenge

She recognizes that uncontrollable swearing can cause problems on her job. Thom works on the Young Children's Project in fundraising and development.

"There are people who would argue that exposing children to bad language is not acceptable," she writes. "But I reckon children who are old enough to recognize a swear word are also old enough to understand that I've not chosen to swear, and that it isn't OK for them to do it."

About two years ago her tic intensified; sometimes she can lose her language altogether. But a telephone interview with ABCNews.com went smoothly. Thoms is eloquent, despite numerous "biscuits" and the occasional whooping sound.

The world has not been so empathetic with Thom. She writes about asking a staff member for directions at a London subway station: "He ignored me, so I asked again, but he turned his back on me.

"I explained that I had Tourette's, that if I was swearing or making unusual movements they were not directed at him and that I just needed information. He looked at me and said, 'I'm not giving you any f***ing information.'"

In the end, he just walked away. But when her transport pass didn't work, she had to approach him again for help. "He said he would -- when I stopped swearing."

Thom burst into tears and with the help of a woman, she was able to leave the station and get a taxi home.

But Thom understands why people are uncomfortable with Tourette syndrome. "There are a lot of myths about it," she said. "They are frightened by it and the public response is in ignorance or fear. They hear the noises or moving around erratically. They laugh at me because they are uncomfortable."

At the same time, Thom says she has experienced "incredible kindnesses" from strangers who took the time to engage with her and listen.

The cab driver who took her home that night understood when Thom explained she had Tourette's. "You've got Tourette's," he told her. "My best mate of 20 years has Tourette's. You're in the right cab."

A friend, Matthew Pountney, changed her life when the two founded the website Touretteshero and she began to see the "humor and creativity" in her condition.

Pountney described her tics as a "crazy language generating machine."

"He said if I was not doing something creative as a result, it would be wasteful," said Thom. "I had never thought of it in those terms."

How her brain chooses her tics are a "complete mystery," according to Thom. "Sometimes strange ideas come together that would not normally be put together that are visual and interesting."

Some of her favorites are: "Capital letters talk to themselves at night." Or "Fingers on buzzards." Or even "Hands up, Action Man."

Her website attracts others with Tourette's and writing for them [and herself] has helped Thom "reframe" the negative aspects of her disorder.

"Previously, I would get angry or upset," she said. "But writing meant time spent thinking about yourself and developing language to explain to other people. It was incredibly powerful."

Today, mostly because of helping others on her website and writing, Thom is more accepting of herself.

"For I long time, I struggled -- if I just tried a little harder or concentrated more, I could catch that tic," she said. "I look at a close friend [who has Tourette syndrome] and I can see her tic and recognize that feeling in my body and how it looks from the outside. Never for a moment do I expect her to control that, so I am more patient with myself."

And the writing itself now gives Thom joy.

"It's very healing not censoring myself," she said. "One of the things that surprised me about writing was having the chance to articulate my thoughts and share my experiences ... I am able to communicate my thoughts without being interrupted."

ABC News

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