For Kids With Tourette's, At-Home Training Could Help

To reduce public tics, children can try therapy at home.

Tomas Rodriguez/Corbis

If you've ever had hiccups in a quiet room, you know how embarrassing and completely uncontrollable they can feel. What if, instead of the hiccups, your body jerked involuntarily or you blurted out words without meaning to? That's a rough idea of what living with Tourette syndrome can be like.

Designers of a new computer program called TicHelper hope that they will be able to help children recognize and control these impulses themselves.

People with Tourette's perform repetitive movements or vocalizations called tics. A simple tic might be something like head jerking, eye blinking, or throat clearing, and a complex tic might involve patterns of movement or saying multiple words or phrases.

We don't know exactly what causes Tourette's, says Douglas Woods, a psychologist at Texas A&M University. Woods, who is also co-chair of the Tourette Association Medical Advisory Board, is one of the minds behind TicHelper.

Tourette's affects more boys than girls, and symptoms usually start between ages 3-7.

i

A view of TicHelper.com

via TicHelper.com

"Sometimes kids will grow out of [Tourette's]," Woods says. But if the wait-and-see approach isn't working, and the tics are interfering with daily life, there are a few treatment options.

One option is medication. Woods says there are a few different antipsychotic drugs that are used to manage Tourette syndrome, but they have side effects and don't always work. An alternative to pharmaceutical treatment is behavioral therapy.

A form of behavioral therapy called comprehensive behavioral intervention for tics, or CBIT for short, is commonly used. CBIT training teaches people with Tourette's to recognize the onset of a tic and to perform a different behavior when they feel one coming on.

"The idea is that when someone has a tic, they tend to have an urge," says clinical psychologist Eric Storch, a professor at the University of South Florida and Clinical Director of Pediatrics at Rogers Memorial Hospital in Tampa. "It's like when you're about to yawn. You know just before it happens that a yawn's coming. [CBIT] teaches a person to be aware."

And it gives them the tools to manage tics. Storch describes a patient whose tic was rubbing two fingers together, to the point of rubbing off skin. With CBIT, the boy was able to recognize the onset of a tic and instead unobtrusively press down on his kneecap until the urge went away.

A typical CBIT training program involves eight sessions with a therapist, spread over 10 weeks. Results, Woods says, can be maintained up to six months.

Both psychologists say that CBIT is at least as effective as medical treatments. The problem is that it requires specially trained therapists — and there aren't that many of them. Which is where TicHelper comes in.

"It's essentially a self-help, self-guided program that leads the patient through a CBIT treatment," Woods says. He and his colleagues received funding from the National Institute of Mental Health to develop TicHelper, which is now being tested. So far, the results look promising. "The kids that go through it, enjoy it," Woods says. They're able to do the skills,"

The program has four main sections: tic education, reducing tic triggers, tic awareness and tic blocking. Videos featuring a friendly actress guide patients thorough each section. The program personalizes treatment based on feedback from the patient. Woods says the testing will help the designers modify and improve it based on user feedback. Though TicHelper isn't available yet, interested patients or doctors can sign up to receive updates on its progress.

The website currently lists the cost of an 8-week program through TicHelper at $150, but Woods says that the price isn't set.

Storch, who is unaffiliated with TicHelper, is enthusiastic about the idea of at-home treatment for tics. "I really think it's an exciting development that has a lot of practicality," he says. "We know what behavioral treatments work well for tics, but the dissemination is really terrible."

Storch says the biggest advantage of TicHelper will be its accessibility. CBIT, he says, works well and is incredibly safe compared with pharmaceuticals. TicHelper would maximize the benefits of CBIT by making it more inexpensive and easier to get to than therapy.

Which is not to say that Storch or Woods would recommend TicHelper as the only form of tic management. Both psychologists suggest that this program might work best as part of a management plan. One option, Woods says, might be to start treatment with TicHelper when at first diagnosis, and proceed to more intensive care if in-home treatment isn't working.

Storch thinks that ideally the patient would work with the program, but touch base periodically with an experienced therapist or health care provider to check progress. But, he says, "we don't have enough providers." And some treatment, he says, is better than no treatment at all.

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Tourette Help UTHSC clinical study offers hope for Tourette symptoms

In sports talk radio, questions are a good thing. They don’t have to bring solutions, after all, just open the gates to discussion and debate.

Dr. Tim Hottell, dean of the College of Dentistry at the University of Tennessee Health Science Center, holds an experimental mouthguard designed to assist patients with Tourette syndrome mitigate their tics. 

(Daily News/Andrew J. Breig)

Craig Carton, who is co-host of WFAN’s morning show, “Boomer & Carton,” in New York, is comfortable with that format in that setting.

But as someone who has Tourette syndrome, and who has two children with it, he is all about answers.

“We don’t even know what causes it,” Carton, 45, said.

Answering that and finding a cure may be long-term projects. In the short term, Carton is encouraged that nonprofit TicTocStop, which he founded in 2013, can help. In its first year, the organization funded a pilot study that ultimately demonstrated the TicTocStop oral appliance lowered the frequency and severity of vocal and motor tics by 65 percent.

“We went into the original study with fingers crossed that this concept we bought into actually would work,” he said. “We were thrilled when the results came back.”

That study, Carton said, involved a small sample size of people with Tourette syndrome and was not in a formal clinical setting. Now, Carton’s TicTocStop has provided $340,000 for a clinical study that will enroll 65 people (adults and children) who suffer from either simple or complex tics. Each participant in the study will be fitted with a specially modified oral appliance, similar to a modified mouth guard for lower teeth. The study will then attempt to assess whether the appliance lessens the severity and frequency of patients’ symptoms.

“This is the first time in medical history that a multisite study of this type has been done,” said Dr. Timothy L. Hottel, dean of the College of Dentistry at the University of Tennessee Health Science Center and the chief investigator for the study. “This device may have the potential to help tens of thousands of people who suffer from motor and vocal tics.”

Tourette syndrome is a neurological disorder characterized by “repetitive, stereotyped, involuntary movements and vocalizations called tics,” according to the National Institute of Neurological Disorders and Stroke.

Other well-known people who have had Tourette symptoms include Tim Howard, goalkeeper for the United States national soccer team; actor and comedian Dan Ackroyd; and former big-league baseball player Jim Eisenreich.

The disorder is named after a French neurologist, Dr. Georges Gilles de la Tourette. He first described the condition in 1885 in an 86-year-old French noblewoman.

Early symptoms of Tourette syndrome, however, are usually first noticed in childhood. The average age of onset ranges from 3 to 9 years old. Eisenreich had early symptoms, but was not diagnosed until he started playing professional baseball. Carton says, looking back, he had symptoms early in life; he was not diagnosed until age 30.

Dr. Tim Hottell, dean of the College of Dentistry at the University of Tennessee Health Science Center, holds an experimental mouthguard designed to assist patients with Tourette syndrome mitigate their tics. 

(Daily News/Andrew J. Breig)

All ethnic groups are affected by Tourette syndrome, but males are affected about three to four times more often than females. It is estimated that 200,000 Americans have the most severe form of Tourette syndrome and that as many as one in 100 have milder and less complex symptoms.

Simple motor tics are sudden, brief, repetitive movements that involve a limited number of muscle groups. Common simple tics include eye blinking, facial grimacing, shoulder shrugging, and head or shoulder jerking. Simple vocalizations include repetitive throat clearing, sniffing, snorting, grunting or barking.

Complex tics involve several muscle groups and the tics are distinct, coordinated patterns of movements. Facial grimacing, for example, might be combined with a head twist or a shoulder shrug. More complex vocal tics also could include words or phrases. They may appear purposeful, with the person touching objects, jumping, bending or twisting.

The most dramatic and disabling tics include motor movements that can include self-harm, such as punching oneself, swearing and speaking inappropriately, or repeating the words and phrases of others. Tics are often worse with excitement or anxiety and better during calm, focused activities.

Carton’s radio show with former NFL quarterback Boomer Esiason is also telecast on the CBS Sports Network. Carton’s symptoms are generally under control, but sudden movements caught on camera have not created any issues. The audience, he says, always has been supportive.

“I’m very honest and open about having it,” Carton said.

Carton’s 14-year-old daughter has seen her symptoms dramatically improve with age and medication. His 12-year-old son will, at times, show minimal effects from Tourette syndrome and at other times have severe symptoms.

“It waxes and wanes and we don’t know why,” Carton said of Tourette syndrome symptoms in general. “My son, he’s been all over the board. He’s been a very willing and brave face of Tourette’s here in the Northeast.”

The new study being led by Hottel will run through January. Children ages 7 to 18 and adults 18 and older will participate. Carton understands there is a “long way to go” in terms of finding a cure, but he is optimistic that the study will help bring real-life, day-to-day, improved quality of life for those with Tourette syndrome.

“It’d be a major game-changer,” he said. “We’re closer than ever before to having a solution for (symptom management) that isn’t pharmaceutical-based and that won’t turn your kids into zombies.”

Source:http://www.memphisdailynews.com/news/2014/oct/14/tourette-help/

Fifth annual advocacy walk in Mendham for People with Tourette Syndrome

Thrifty runners, walkers and team captains are encouraged to take advantage of the final days of the early bird registration discount for the fifth annual NJ Walks for Tourette Syndrome at Mendham event.

Until Monday, Oct. 13, registration is reduced to $22.50. The price will then increase to $25 for online and on-site registration.

 "This event, which started out by kids for kids, has grown to a powerful movement," Faith Rice, director of the N.J. Center for Tourette Syndrome (NJCTS), said in a statement. "The more people we having stepping up and stepping out for kids living with Tourette Syndrome the more likely we are to break the stigma attached to this very misunderstood disorder."

Each year the event draws hundreds of walkers and runners, families and pets to Mendham Borough Park. Early registration helps the NJCTS plan for the day and ensures a commemorative T-shirt for each participant.

Funds raised will benefit NJCTS's education outreach program which includes training programs for teachers and nurses at schools around the state, as well as peer training and anti-bullying sessions on behalf of New Jersey kids with Tourette Syndrome.

Tourette syndrome is a neurological disorder characterized by involuntary sounds or movements known as tics. A person with Tourette syndrome is extremely likely to struggle with accompanying mental health or learning disorders as well. It is estimated that as many as 1 in 100 people show symptoms of Tourette syndrome, or over 20,000 children in New Jersey, the statement said.

 "There has never been a better time to gather and celebrate the joy and accomplishments of those in the TS community," said Rice. "Even if you've never met someone with TS we invite you to become part of a day of empowerment and acceptance."

For those unable to attend the event, sponsoring an individual or team is a way to show support for those living with TS. Corporate/business sponsors also are needed to help present the event.

For information visit www.njcts.org or call (908) 575-7350.

Source:http://newjerseyhills.com/observer-tribune/news/fifth-annual-advocacy-walk-in-mendham-for-tourette-victims-is/article_77f1b5fb-c7d2-58d7-b754-20a969a12763.html

Camp Tanager Hosts Tourette’s Camp

From kcrg.com- Many of us have a nervous “tic,” an action or habit that shows itself only when we’re nervous, but try to imagine not being able to control that tic. That’s what it’s like living with Tourette Syndrome. People with the disorder got to spend some time together this weekend at Camp Tanager, to show support for one another.

Saul Lubaroff of Iowa City was diagnosed with Tourette’s in 1979, a time he calls “the dark ages” for people with the disorder.

“Very, very few people knew what Tourette’s was,” said Lubaroff.

However, he said with advancements in the medical field, and more events like this that spread awareness, things are much better.

“Now, in 2014, people really seem to have a grasp or they know what’s going on, or they know somebody or knew somebody who has it,” Lubaroff explained.

Better, but not always easier. Jackie Kuntz said Tourette Syndrome is often misunderstood, and in some cases, still misdiagnosed. It often comes “packaged” with other problems like anxiety, or in her case, obsessive-compulsive disorder.

“When I was growing up, sometimes they would call it ‘ants in the pants,’ or nervousness, and lots of things like that,” said Kuntz. “I started having tics when I was 6 years old, throat clearing and things like that, and OCD manifestations, but I wasn’t diagnosed until I was 22, so it took a really long time.”

Sometimes the tics are physical, other times, verbal, as in Lubaroff’s case.

“Sometimes, it’s just a matter of, ‘why do you keep doing that? I have tourette syndrome. Oh. Then that’s it,” Lubaroff said.

That’s the message Lubaroff, Kuntz, and others with Tourette’s are sending to families and individuals dealing with it: that talking about it is the best way to dispel the myths and misconceptions.

“Coming to things like this ... being around ‘my own kind,’ as I call it, it’s the best feeling in the world,” Kuntz said, smiling.

Making peace with or even embracing their tics is part of that.

“I really felt like I was born defective, but once I let go of the shame of it, it was so freeing,” Kuntz explained.

If you want to know more information about Tourette’s, you can visit the Tourette Syndrome Association’s website, www.ts-stories.org.

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Calgary surgeon and educator retires, leaving generation of inspired medical students

PHOTO: UCalgary Medicine

Dr. Morton Doran, surgeon and educator at the University of Calgary medical school.

Dr. Morton Doran isn’t your everyday surgeon. Most surgeons pride themselves on their ability to perform finely controlled, precise hand movements. Dr. Doran’s hands sometimes have minds of their own, jerking uncontrollably in uncoordinated movements called ‘tics’. Most surgeons take pride in their ability to focus on one task for long periods at a time. Dr. Doran’s condition, however, makes him highly impulsive and prone to distraction. When many surgeons retire from surgical practice, they retreat into their own personal lives. But when Dr. Doran retired from practice, he spent the next eight years at the University of Calgary medical school,sharing his intimate knowledge of anatomy with his future colleagues. This July, though, he is – as he puts it – “retiring for good”.

Operating beyond an affliction

The fact that Dr. Doran suffers from Tourette syndrome is now relatively well-known. Many news articles have been written about his affliction. The famous writer and neurologist, Dr. Oliver Sacks, even wrote a short story about a surgeon with Tourette’s, based on the life of Dr. Doran. All of these writers, and indeed all who have known Dr. Doran, have found his story fascinating and inspiring. Especially since Tourette’s never once affected Dr. Doran when he was working in the operating room.

A lesser known fact about Dr. Doran, however, is that Tourette’s has never affected him when teaching at the medical school, either. Indeed, the spry, silver-haired professor loves teaching just as much as operating, if not more so.

“My favorite thing about working here is all the students”, says Dr. Doran, “all the keen, bright, interested, motivated students. Association with young people is what keeps me going all these years, and it’s what I will miss the most when I’m officially retired.”

Inspired by students to teach

Indeed, Dr. Doran embodies the spirit of these “young people” – biking at least 50 kilometres every day and ensuring he stays fit as a fiddle. The jersey name (a school tradition of nicknaming) that the graduating medical class of 2014 gave him was, appropriately, “Gun Show”.

Dr. Doran started teaching at the University of Calgary 26 years ago in 1988, while he was still in practice. He initially taught physiology and anatomy part time for the nursing course. Gradually he began to teach medical students, and for the last eight years has been teaching at the Faculty of Medicine nearly full time as a retired surgeon.

“What got me interested in teaching was when I was in my surgery residency, my preceptors asked me to teach small groups while they were busy. And you don’t say no! But I liked it. I told myself, one day, I’m going to do this full time.”

The phrase “full time” in Dr. Doran’s case is the understatement of the decade. The energetic ex-surgeon can readily be found in the anatomy lab on evenings and weekends, helping students learn new concepts and prepare for exams. When he is asked how he pulls this off, he simply states, “I have the time to do it, so why not?”

Keeping it simple and going beyond

Dr. Doran’s teaching style is also quite special. In contrast to the teachers who unabashedly “embrace technology”, Dr. Doran remains old-school. His preferred teaching tools, aside from cadavers and skeletons, are lab aprons, pipe-cleaners, and old fashioned black boards and colored chalk.

“I like simple!” exclaims Dr. Doran. “My tools allow you to see things in 3D in a simple, clear way. I guess I’m a dinosaur, but I like it.” Truth be told, however, Dr. Doran is no Troglodyte. A few years ago, Dr. Doran began recording podcasts of his lectures, accessible through the medical school’s online student portal, and these are treasured by his students as bona fide educational material. His pipe cleaners and chalk drawings have become the stuff of legend for medical students, and have attained their own special place in this era of information technology.

Indeed, Dr. Doran’s passion for simplifying medical concepts has clearly made a difference for his students.

“What I found particularly special about Dr. Doran is that he loved to devote time to students,” says Amanda Eslinger, a third year Calgary medical student who spent several weeks doing an elective with Dr. Doran. “He was one of those teachers that was able to make each of us feel like special individuals. He tailored his teaching to my own learning needs and he made me feel like I was worth the extra time.”

“Dr. Doran is a teacher and physician many of us look up towards,” states Dr. Jennifer Au, a former medical student beginning her family medicine residency this summer. “I will never forget how he went above and beyond with your time and efforts for us. We are forever grateful for his passion towards medicine, teaching, and students.”

Giving back (even more)

Speaking of grateful, just last month, students from the Class of 2016 coordinated a farewell celebration for Dr. Doran, and raised money to donate to the Tourette Syndrome Foundation of Canada in his name. Students have also created a websitein tribute to their beloved professor. At time of publication, this website is still accepting donations for the Tourette Syndrome Foundation.

As the Foundation’s former director, Dr. Doran remains involved in raising awareness about Tourette’s Syndrome. He has informed healthcare providers and advocated for families. His work has even been recognized by the Order of Canada. “I help put it out there,” describes Dr. Doran, forever humble. “I explain what Tourette’s is and how to manage it, and for the kids and their parents, I let them know that it’s not the end of the world, that life isn’t going to be miserable forever.”

Indeed, if there is one message that Dr. Doran would like to leave behind, it’s to re-emphasize the fact that the symptoms and behaviors of Tourette Syndrome patients are not volitional, and for people to avoid discriminating. “I was teased a lot by the other kids. Especially because I had weird behaviors. But people tease more out of ignorance than anything. If you can provide a little bit of an explanation, that Tourette’s is just another medical disorder, no different than diabetes or broken bones, people will understand.”

“People aren’t judgmental if someone has a broken leg, but people do very much judge others whose behaviors are outside the norm. But these are not volitional. So don’t be so judgmental as to push us away, call us various names, or dismiss us.”

Dr. Doran’s life and advocacy work are truly inspirational. His dedication to helping his students is equally praiseworthy. A role model for students and staff alike, he has spent his entire life helping others better understand both Tourette Syndrome and human anatomy. A surgeon par excellence, a teacher merging the best of old and new academic traditions, and an advocate for a widely misunderstood disease – future physicians will have much to learn from Dr. Doran’s legacy.

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Summer camp helps kids with Tourette's syndrome

Eleven-year-old Blake Desadier thought his mom was lying when she told him there were other kids like him with Tourette's syndrome.

Then he went to "Camp Twitch and Shout," a weeklong summer camp for children with Tourette's, a neurological disorder that makes people have different types of involuntary muscle movements or speech. The camp helps children embrace the disorder. Many of the counselors also have Tourette's.

"My mom wasn't lying to me about how many people have Tourette's," said Blake, who is from New Orleans. His face twitches and he clears his throat uncontrollably.

Blake is one of about 170 kids who attend the camp each year. It ended Friday.

The National Institute of Neurological Disorders and Stroke estimates 200,000 Americans have the most severe form of Tourette' syndrome. Symptoms are often worse in the early teens but improve into adulthood. Boys are affected more often than girls.

Audrey Vogel attended camp four years ago when she was 14. Now, she is a counselor in training.

"It was honestly one of the coolest moments in my life and, this sounds weird, but everyone was just ticcing," Vogel said of her first camp. "Kids were throwing themselves on the floor, they were screaming at the top of their lungs. I have a tapping tic where I have to tap people 8 times on the shoulder. No one even cares."

Vogel said the camp changed her life. She is now open to telling people about her condition.

Located at a state park in Winder, about 50 miles east of Atlanta, the camp was started six years ago by a handful of parents whose children have Tourette's. Tricia Kardon is one of the co-founders and camp director.

"Our vision was to have a place where no one would question their disorder, where they could be normal and they could have typical camp experiences. And, hopefully change their life," she said.

The children's tics range from mild to severe.

One child spits in someone's face and apologizes. Others fall unexpectedly, so camp counselors always have an eye on them.

Through sharing experiences, the children learn to better cope with Tourette's.

"It's made me look at Tourette's not so much as a problem, more like a quality," said 11-year-oldSam Duggar.

For many, the biggest challenge is leaving.

"It's a lot of on and off crying," Vogel said. "You stop ... and then a friend comes up and hugs you and you start crying all over again."

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Tic Toc Stop Opens Camp Carton for Kids with Tourette Syndrome

The Tic Toc Stop Foundation today announces Camp Carton will begin its inaugural season on July 14 at the Ramapo for Children Camp in Rhinebeck, N.Y. Named for well-known sports radio personality Craig Carton who has Tourette Syndrome (TS), the camp is designed as a haven for children who have TS.

Camp Carton is a seven-day, sleep away camp serving children ages 10 to 13 diagnosed with TS. This year, the camp will host 24 campers from New York, New Jersey, Pennsylvania, and Connecticut, July 14 to 20.

TS is an inherited, misdiagnosed, misunderstood neurological disorder characterized by tics. The summer camp is produced by the Tic Toc Stop Foundation, a nonprofit founded by Craig Carton that raises money to find a cure for TS. For these campers, the camp is entirely paid for by the Tic Toc Stop Foundation.

“I am creating the camp because I know there are a lot of kids with Tourette’s whose families are a little wary of sending them to a camp because they don’t know how the other kids will handle or react to the tics and some of the other things that come along with Tourette’s,” said Carton, a popular part of WFAN Sports Radio’s “Boomer and Carton” morning show in New York. “Why not give those kids an opportunity this year to have a sleepover camp experience where the families don’t have to worry and the kids can enjoy camp for what it’s supposed to be.”

Camp Carton will feature a daily slate of activity choices, including swimming, boating, sports, hiking, a ropes course, arts & crafts, a talent show and more. The main goal, according to Carton, is to provide a fun, safe atmosphere for kids affected by Tourette Syndrome.

Collaborating with Carton to help make Camp Carton a success is the New Jersey Center for Tourette Syndrome & Associated Disorders (NJCTS), which annually hosts its own Family Retreat Weekend at YMCA Camp Bernie in Port Murray, N.J.

For more information about Camp Carton, visit http://www.campcarton.com. To donate to the Tic Toc Stop Foundation, visit http://www.tictocstop.com.

For the original version on PRWeb visit: http://www.prweb.com/releases/2014/07/prweb12010131.htm

Sweeney touts NJ budget success at center for children with Tourette Syndrome

Senate President Stephen Sweeney (D-Gloucester) shakes hands with Governor Chris Christie as the governor steps on stage during his Inaugural Ceremony at the Trenton War Memorial in January. Sweeney visited the New Jersey Center for Tourette Syndrome Tuesday to highlight one of the beneficiaries of the new state budget. (Tony Kurdzuk/The Star-Ledger)

Although he’s still angry over the outcome of the budget Gov. Chris Christie signed into law last week, state Senate President Stephen Sweeney highlighted one of the spending plan's winners on Tuesday by visiting a nationally recognized center dedicated to improving the diagnosis and awareness of a neurological disorder.

The New Jersey Center for Tourette Syndrome in Somerville will get a $250,000 grant this year because "this is one of the programs that a lot of the people on both sides of the aisle believed in and pushed for," Sweeney said.

Sweeney acknowledged the center lost money after Christie took office in 2010 and he slashed funding to scores of program to close a deep deficit. But the Gloucester County Democrat and likely gubernatorial candidate said he did not go there "to rub it in."

"I am trying to point out you gotta put faces on the budget. These are programs that for a small amount of money have enormous impacts. They are lifelines to families," Sweeney said.

View full sizeState Senate President Stephen Sweeney (right) met with families, such as Tracy Lederman and her son, Ethan, who rely on the services of the New Jersey Center for Tourette Syndrome and Associated Disorders in Somerville on Tuesday. The center received a $250,000 grant from the state budget.Susan K. Livio/The Star-Ledger 

Tourette Syndrome is an inherited neurological disorder characterized by uncontrollable vocal sounds and movements known as tics that affect about one in 100 children, according to the center.

About 20,000 children in New Jersey are diagnosed with the disorder, “and it affects every aspect of their lives — psychologically, socially, educationally and physically,” said Faith Rice, the center's executive director and the mother of an adult child with the disorder.

The center was created with a $1 million line item in the state budget a decade ago, Rice said, only to see that funding eliminated in 2010. The center has continued to receive a $400,000 competitive grant from the state, she said.

“They don’t need special education. They are not cognitively impaired. They need time to do things because the tics get in their way,” Rice said.

Among its many services, the center offers family support groups and advocacy training, collaborates with Rutgers University and other universities to support research, provides college scholarships for children, has created educational and training programs to help pediatricians and medical students learn how to spot the disorder.

Tess Kowalski, of Plainsboro, explained to Sweeney how she has spoken to medical students at Yale and Rutgers.

“I used to be really shy. After my first talk to about 100 people at my synagogue, that changed everything,” Kowalski said. “I’m 14 years old and I am talking to these adults. They know so much more than I do but I am teaching them. It was wild.”

Sweeney, whose 21-year-old daughter has Down syndrome, said he could identify with the families he met, and how these programs dissolve feelings of isolation all parents experience if their child has a disability.

But when asked whether the visit took the sting out of the budget showdown with Christie, who won in court the right to delay a payment to the state employee pension fund, Sweeney replied, “No, not at all. Not even close.”

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Giving back to the community

Softball tournament being held in support of Tourette Syndrome Foundation of Canada

NEW GLASGOW – Garrett Holmes continues to take a negative situation and turn it into a positive.

© CHRISTOPHER CAMERON - THE NEWS

Garrett Holmes poses with a poster promoting the Swing for Tourette Syndrome Lob Ball Tournament being held next week in Trenton.

During an exhibition game against the Truro Bearcats last year, the Bearcats captain allegedly mocked the former Weeks Crusher. In September Holmes discussed the on-ice incident, stating that his physical symptoms of Tourette’s were being mocked by head twitching and the words “twitch, twitch, twitch.” The league never found any grounds for suspension and therefore there was no further discipline by the MHL.

In the weeks and months to follow that game in early September, Holmes said the community support was outstanding.

“It was more the reaction after everything that happened that made me want to do something in the community,” he said. “I had kids coming up to me saying thank you and everyone I talked to said it was great that so much good came out of such a tough situation.”

Next weekend, July 19-20, he is the organizer for the Swing for Tourette Syndrome Lob Ball Tournament. Right now he has five teams registered, but hopes that will increase to six to eight teams.

It costs $250 and two softballs to participate. Each team must have a minimum of two females for the games, which will be played at Scotia Park in Trenton. Throughout the tournament they will have raffle and draw prizes and a barbecue.

“No, I never thought I’d be in this situation, but it feels great to be able to do something to give back,” he said. “It was a huge boost for me after everything (happened) to know that I could go on and not worry about it. I’m not different than anyone else; it’s just something you live with. I hope others learn that as well.”

On July 19 there will also be a dance at the New Glasgow Legion beginning at 9 p.m. The general public (19 and older) is welcome to attend the dance even if they aren’t in the tournament. They will take donations at the door.

Holmes said all funds raised will go to the Tourette Syndrome Foundation of Canada after they cover their costs. He said right now most are covered, but there are a few minor items left to look after.

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Why Tourette’s May Be Tim Howard’s Secret Weapon on the Field

Those record 16 saves against Belgium might not have just been sheer athletic ability. Neurologist Oliver Sacks says the syndrome helps give the Team USA goalie ‘abnormal quickness.’

Tim Howard’s astonishing performance as the U.S. goalie in Tuesday’s World Cup game against Belgium shares a neurological component with a case described decades ago by the eminent neurologist Oliver Sacks involving an essentially unbeatable ping-pong player.

Both Howard and Sacks’ patient have Tourette syndrome, the most manifest ill effects of which are involuntary tics.

But in Sacks’ experience, many of those with the condition also possess preternaturally quick reflexes, which his ping-pong player also demonstrated by proving able to step in and immediately back out of a moving revolving door without being struck.

“Abnormal quickness,” Sacks told The Daily Beast on Wednesday. “I see this in many other people with Tourette’s.”

Dr. Oliver Sacks. (Erica Berger/Corbis)

Sacks cited a study where a control group of "neuro-typicals” and a person with Tourette’s were asked to react as quickly as possible to a situation. The control group proved able to respond two to two and a half times faster than usual and with poor aim. The person with Tourette’s responded five to six times faster than usual and without compromising accuracy.

“This is very real, this mixture of speed and accuracy,” Sacks said. “I think it often is part of Tourette’s.”

Howard said in an interview with Der Spiegel last year that he was in his late teens when he discerned a blessing amid the trials of Tourette’s.

“I realized I was faster than others when it came to certain movements, and that these reflexes were linked to my disorder,” he said.

One Tourette's researcher who spoke to The Daily Beast was more cautious than Sacks, saying he could not confirm with scientific certainty that people with the condition do indeed have heightened reflexes.

“The research is not in yet if they can perform at a higher level than can be normally expected,” said Dr. Michael Okun, professor of neurology at the University of Florida at Gainesville and chairman of the Tourette Syndrome Association Medical Advisory Board.

Okun has found that other aspects of Tourette’s can prove highly beneficial in a wide range of endeavors. He noted that people with the condition often have obsessive-compulsive tendencies. They repeat tasks over and over with a ritualistic and often perfectionist bent.

“Obsessive-compulsive tendencies really help to enhance abilities,” Okun said. “In chess, piano, or when they’re playing goalie for the World Cup team.”

“Obsessive-compulsive tendencies really help to enhance abilities,” Okun said. “In chess, piano, or when they’re playing goalie for the World Cup team.”

Okun went on, “It’s the practice, all the stuff you don’t see. It’s all the work that Howard does off the field…sharpening and honing skills.”

The very effort to do it exactly right requires focus. And people with Tourette’s often discover that total focus on what they are doing causes their tics to subside.

“They focus really well…because they need to focus,” Okun said.

Viewers would not likely see if Howard experienced a tic on the field, Okun suggested, because it would strike when the ball was far away from the goal.

“When the camera’s not on him,” he said.

Howard reported in the Der Spiegel interview that he does indeed sometimes suffer tics during a match, when the play is on another part of the field.

“As long as the game is not happening right in front of my nose but somewhere in the midfield, I let it twitch,” he said. “I don't try to suppress it, either.”

That changes when the ball comes near.

“Then I am all there,” Howard said. “It’s strange. As soon as things get serious in front of the goal, I don’t have any twitches; my muscles obey me then.”

He was asked if he worried that a tic might someday cause him to drop a ball.

“It won’t,” he replied.

Okun and Sacks agree that Tourette’s seems to originate in the basal ganglia, a region in the forebrain that is related to a wide range of functions, including the initiation and inhibition of motion, as well as emotion, cognition, attention, and learning. Scans show no clear anatomical difference between those with Tourette’s and those without. The condition is thought to involve complex neural circuitry such as a juncture where focus can banish tics, where mind really can prevail over matter.

“Fascinating,” Okun said.

That underlying triumph was at work in each of Howard’s record 16 saves on Tuesday. Howard also almost certainly was moving with the faster reflexes he had first consciously noticed as a teen, a gift such as Sacks first observed in another man with Tourette’s back in 1981. Sacks happened to cite Howard as one of several great athletes with Tourette’s in an article in 2014. Sacks also listed basketball player Mahmoud Abdul-Rauf and baseball players Jim Eisenreich and Mike Johnston.

Sacks did not see the big game on Tuesday, but he expressed interest in viewing video of Howard’s saves. Sacks will be looking to see if there were similarities other than remarkable speed between Howard and the ping-pong player, whose greatness further derived from the ability to make surprising and unpredictable shots.

“I’m not saying it’s a good thing to have, but if one has Tourette’s, there are advantages,” Sacks said.

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