IN NEED OF PARTICIPANTS

This is the Outline Examination Approval Form for the research on Group Dynamics courtesy of University of the Philippines, College of Education.

Twitch and Shout Lay Forum: March 26, 2007, St. Lukes Medical Center

Nota Bene: If you don't want it with music, just click the speaker icon on the left hand corner. :-)

Individuals With Disabilities Edcation Act (IDEA) for Children with Tourette Syndrome

In the middle of 1960 and 1975, the US Congress, state legislatures and federal courts have come up with educational rights for children with disabilities. They have passed laws encouraging and/ or funding programs in special education. The Public Law 94- 142 in 1975 which was originally introduced in 1971 is now named the Individuals with Disabilities Education Act or IDEA has a primary purpose of creating rights for children with disabilities. This law together with ADA or Americans with Disabilities Act which was passed in Congress in 1990 have been the two main bodies for litigation during the past years.

Consequently the IDEA provides many specific procedural protections for the parents of children with disabilities. These safeguards are spelled out in the US Code of Federal Regulations, Title 34, Subtitle B. Chapter 3, Part 300. Some advocated said that these safeguards were poorly enforced at that time.

In 2004, IDEA was reauthorized to also serve children with Tourette Syndrome. The changes that were done were made effective last July 1, 2005. And these changes include

• short term goals will no longer be required on the Individualized Education Programs (IEPs) except those children under "No Child Left Behind" assessment ( or those with severe cognitive disabilites)
• flexible IEP meetings particularly alternative attendance such as by telephone or video conferencing
• three year IEPs to meet evolving needs of the child
• discipline as schools will not only provide support for academic purposes but also in terms of behavioral and functional goals which are very important for children with TS
• "Stay Put"- the right of the student to remain in the current placement has been eliminated, parents can now appeal for placement changes for their child
• early and positive intervention
• professional development- personnel who will work with children with disabilities should improve their academic and functional performances
• collaboration relationship- there is a greater focus to train parents and schools to use collaboration techniques
• transition services to focus not just on academic achievement but also on functional development
• the "specific learning disability" can no longer be required only on the aspect of academic achievement and IQ score
• schools will be prohibited from requiring that the child be under medication as a condition when attending school, recieving services or evaluation purposes
• schools may use 15% of IDEA's funding if the child requires more academic and behavioral support
• evaluations must not focus on the academic achievement of the child but also on developmental and functional abilities

See the more comprehensive summary of the new law.

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Source:

Martin et. al., Special Education for Students with Disabilities, Vol. 6, No. 1, 1996

Tourette Syndrome Association, USA

Deep Brain Stimulation in Action

I've talked about Deep Brain Stimulation in my previous entries, now I get to share with you a movie clip showing how it's really done.

An Update on Self Esteem for People with Tourette Syndrome

I read an article from the Tourette Syndrome website in the USA about uplifting your self- esteem. I talked about it before and i decided to post this entry as a follow-up about that personally because I find this also very relevant. Furthermore, the information that i will be sharing with you came from a TS diagnosed himself, Paul Devore, who despite his struggles about Tourette syndrome managed to become so successful in his life.

In the article, he wrote many things about himself but what I want to share are the tools that he enumerated to help build self- esteem. According to him, the following are the tools that you can use.

1. BE THE BEST YOU CAN BE
Focus on your strengths and not your weaknesses.

2. SET OBJECTIVES
Find and set the importance goals in your life.

3. BRING VALUE TO OTHERS
Focus on the positive, hang out with winners!

4. THINK OPTIMISTIC
Surely bad things happen in this world, but respond positively to it!

5. IMPROVE THE THINGS THAT YOU'RE GOOD AT

There may be other ways by which you can improve or enhance your self- esteem, you might be able to get the strategies deep down inside you. Another thing that struck me through reading his article was when he said that "SCHOOLS TEND TO FOCUS ON THE WEAKNESS".
He said that this might be different today but for many years this has been the tendency. The author claimed that when he was in grade school, he couldn't draw much. His teacher was always giving him exercises to work on his drawing skills. Most teachers go away with the weakness by letting the student work on something that possibly might not be his or her interest at all. The end result is forgetting about what the student is really good at that could be used to his full advantage. Paul Devore even said and I quote:

"...if we focus on those things we’re good at and we like, we have a possibility, the potential, to not only enjoy our life but to develop a passion for what we do. And that is, a passion is, how you become excellent at something."

6. PROJECT YOUR BEST QUALITIES
Take pride in your strengths, accept compliments

7. NEVER MAKE A PROMISE UNLESS YOU CAN KEEP IT
According to Paul , this is a credibility builder. This will also build your reputation for other people.

8. CHANNEL PROBLEMS INSTEAD OF LAYERING THEM
Don't waste time thinking about problems one after the other (layering), instead focus on each one, assess and give solutions to it until you have one problem solved (channeling). Take your time into it.

9. LEARN AND GROW
"How can you make life better for people with Tourette Syndrome? Give praise to others at every opportunity. You deserve high self-esteem. You don’t have to be perfect. There is no need for perfection. You don’t have to be good at everything. Just make the best of your strengths. Reduce the focus on your weakness. Identify and work on your unique abilities. Pursue them and achieve great things. Feel good about who you are because you are terrific."

I Don't Think Tourette Syndrome's Funny

A Letter for a Grateful Mother

A letter surprised me from my inbox this morning. I got pretty excited again to think that TAWM site and my drive for TS awareness in the Philippines (PTSA) has been serving its purpose.

Here goes my reply:

Hello Ms. Cynthia. I am very grateful that there are people like you who are appreciating the work that I’m doing here in TAWM site and in behalf of all the PTSA heads and members. I may not be able to relieve your pain of dealing with TS eversince your child has been diagnosed to have it but by understanding and believing in it, I hope I can make it possible for you to bear it. Your experiences and struggles are the same as those people who are also dealing with TS themselves. You are not alone. Being a parent of a kid with TS is truly not a simple task. The confusions and assumptions before the diagnosis are already challenges. Moreover, upon diagnosis and the managements after the diagnosis are great challenges furthermore.

I admire you for educating yourself about the disorder. This is what we all need prior, during and after diagnosis. Everybody needs to know if not a lot, even a little about the disorder. This will help us understand the facts instead of placing our judgements on misconceptions. I would just like to remind you to keep doing that and learn about TS in all perspectives (medical, psychological, behavioral, etc.) In that way, your ideas will not be single-focused. It is important for the TS- diagnosed to be understood in all levels.

Please continue to be an active member of PTSA network. Although, we are buds in this endeavor, through yours and the other members’ help, the possibilities are endless.

Regards to you and your family, and I’m looking forward to see you in all of PTSA’s future activities.

Micronesia Update

1st Picture: Marlon and I posing together with Leske's Mom and Grandfather

2nd Picture: Leske and his mom with the two registered nurses of St. Lukes Medical Center

3rd Picture: Leske and Family

I had a previous post about my new friend from Micronesia. I just want to share the pictures that we had at St. Lukes Pediatric Suite where Leske, the kid who was diagnosed with TS, chose the Philippines to have medical assistance regarding Tourette. They were surely taken cared of with all the assessments and lab works they underwent. They went back to Pohnpei, Federated States of Micronesia as satisfied foreign customer last September 24.

To leske and family, thank you for choosing the Philippines. You guys are always welcome to come back.

TS is Not a Hindrance to Success

Being a proud friend that I am, I would just like to share with you some insipring experiences of Marlon, a filipino with Tourette syndrome. Marlon went through the usual challenges as a kid, teenager and now an adult in dealing with tourette syndrome.

As a kid, sometimes he was being reprimanded for doing the tic. As a result, he would often suppress to please his parents. It became more difficult for him as the suppression just worsen tic occurences.

As a teenager, he would feel shameful about doing the tics in public. He felt like most of the time, he was forced to explain the reasons behind the tic just so other people could understand and not judge. That scenario became usual that he came to a point where he got tired to just let other people know that he was suffering from a disorder called Tourette syndrome.

As an adult, he understood the disorder even better because of his drive to read more about TS. But as years passed by, managing his own disorder just reached Marlon's limit. He stopped taking medications in 1993. But from that time on, Marlon did not let his disorder stopped him from where he wanted to be.

Truly TS is not a hindrance to success. Marlon is already a band member of a popular band called 3rd avenue. They have been having Mall Tours, radio and tv shows, bar gigs and others. Marlon may be an inspiration to kids who are just beginning to discover their condition. This is just a reminder that TS is never really a hindrance to your dreams. Don't stop dreaming!
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Article appeared in www.marlonbarnuevo.multiply.com

A Friend from Micronesia

About roughly four days ago, Marlon and I went to St. Lukes Medical Center to visit a family from Micronesia where the 6 year old kid was first diagnosed with Tourette Syndrome. They came to the Philippines in order to get more help with their kid's diagnosis. Marlon referred them to SLMC for a series of procedures. The Philippine Tourette Syndrome Association was introduced to them as a support system. The family was indeed very grateful primarily for Marlon's assistance and the piece of information that we have given them during their stay here in the Philippines.

PTSA Update!

There are some people who are actually contacting me for some relevant infos about TS. And these people have just been diagnosed to have the disorder or been looking for some Filipino site about TS. I want to thank my friends who keep on referring people who are involved with TS. We’re still on the process of expanding the Filipino TS network. And we need all the help we can get to jumpstart activities if not for the year, by next year.

This will also serve as a plea for my readers to keep writing and sending in comments. It would be very nice for you to come back as often as possible. The founders of the Philippine Tourette Syndrome Association are doing everything they can to keep the organization alive and relevant to all of you.

For teens or even children who are willing to exchange personal emails, you can contact me or Mr. Marlon Barnuevo at barnuevo@yahoo.com for some chit-chats about Tourette syndrome. Personal meetings are also welcome. We are here to help you out with anything else regarding Tourette syndrome. It would be very nice to introduce yourself to us.

For the meantime, again send in your stories for inspiration and keep visiting.

2008 TSA National Conference

The United States Tourette Syndrome Association will hold its National Conference for Tourette Syndrome on April 4-6, 2008. Website registrations received before January 1, 2008 will get an early- bird discount. Please take note that this discount will only apply to online registrations. Registration will include all materials including Friday, Saturday and Sunday breakfast; Friday and Saturday lunch; and Saturday award banquet.

CONFERENCE HOTEL INFORMATION

CONFERENCE DATES
Pre-conference Meetings ~ April 2 & 3, 2008
General Session ~ April 4, 5, 6, 2008

LOCATION
Hilton Alexandria Mark Center
5000 Seminary Road, Alexandria, VA 22311

TO MAKE HOTEL RESERVATIONS CALL
703-845-1010 or 800-HILTONS

Ask for the TSA Conference Rate
In order to be guaranteed a room from the TSA block,
you must make your hotel reservation prior to March 13, 2008

GROUND TRANSPORTATION ~ COMPLIMENTARY
Hilton Shuttle service to Ronald Reagan Washington National Airport
The Pentagon, Pentagon City Mall and the Metro Subway System

RECREATION
Heated indoor /outdoor pool with hydraulic lift
24-hour Executive Health Club featuring LifeCycles, LifeStep
Machines, Treadmills, and a Multi-Station Universal Gym
Two lighted outdoor tennis courts
Jogging Trails and Walking Paths through adjacent Botanical Gardens

DINING
Finn & Porter, offering Steak, Seafood, and Sushi

PRE- CONFERENCE ACTIVITIES

April 2: Chapter Leadership Training, Trip to the Hill Training

April 3: Newly- diagnosed Seminar, Trip to the Hill Training, Leadership Training

April 3- 6: Daily Exhibit Hall Set- up

CONFERENCE FEES

GENERAL SESSIONS
[ _ ] $350 TSA Member
[ _ ] $425 Non-Member rate *
Registration includes all materials as well as:
Friday, Saturday, and Sunday Breakfast
Friday and Saturday lunch
Saturday Award Banquet

* I wish to join TSA now and receive the
reduced member registration rate.

[ _ ] $ 45 TSA Membership dues

NEWLY DIAGNOSED SEMINAR (THURSDAY)
[ _ ] $ 90
Registration includes materials and Thursday
Breakfast and Lunch

LEADERSHIP TRAINING
[ _ ] $125
Registration includes materials :
Thursday Breakfast and Lunch
Wednesday Trip to the Hill Training
Thursday Trip to the Hill including
reimbursement for Thursday evening
Dinner up to $35

TEEN ISSUES TRACK
[ _ ] $350 ~ regular banquet meal
[ _ ] $330 ~ youth banquet meal
*This is a regular general session conference
track; see information sheet for details.
Registration includes all materials as well as:
Friday, Saturday, and Sunday Breakfast
Friday and Saturday lunch
Saturday night Banquet

YOUTH MEALS
Friday, Saturday & Sunday breakfast
and Saturday banquet for those
registered for off-premise youth
program
[ _ ] $138~ with regular banquet meal *
[ _ ] $118 ~ with youth banquet meal *
[ _ ] $ 72 ~ Fri/Sat/Sun breakfasts only*

The above fees apply from January 1, 2008 to March
13, 2008. After March 13, 2008 please add
[ _ ] $50 per person for late fee

** Note on-line registration discount for
TSA Members

You can download the registration form at the right side menu bar on DOWNLOADS. Visit the TSA website for more information.

Salamat Dok: Tourette Syndrome in the Media

Kontrobersyal: Tourette Syndrome in the Media

My Struggle with Tourette Syndrome: Story of a Filipino Guy with TS

Yet another Tourette Syndrome Life Story
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My very first motor tic appeared when I was in grade three. For the first few months, I kept on touching my hair repeatedly. It seemed to be a typical hair-fixing habit to some, but I started getting reactions from people when more of the “classic” TS tics came out less than a year after. My eyes blinked absurdly, I had facial twitches, and slight vocal tics appeared when I reached high school. My tics would often change from one form to another. At times, I would have strong, head-jerking movements. The next thing I know, I’d have my arm flipping, coupled with a loud “humph!” vocal tic.

Life was tough for me during those years. I was being teased at school, got stared at by other people everywhere, and worse- I was scolded at home. “Tigilan mo ‘yan!” my mother would shout to me no less than a dozen times a day. At that time, many speculations have come out from friends, neighbors and relatives. These people would tell me and my mother, “Ay, mannerisms lang ‘yan, pwede pang pigilan…” or “ ‘Yung anak ng kapatid ko, ganyan din noon, nawala naman.” A relative of ours has even insisted on having us visit a Psychiatrist- a move that I completely opposed, for obvious reasons. One of the most common reactions I heard was “Nasa ugat lang ‘yan…ipa-hilot mo,” a suggestion I still hear up to these days. Nevertheless, I strived very hard trying to live a normal teenage life despite of all the gossips from neighbors, ridicule that I get from peers, and even reprimands from teachers who seem to have been distracted by my tics. I decided to cope with my shortcomings by excelling in as many things as I could

At times, especially when scolded, or when I’m about to face a situation I deem crucial, I suppress my tics. But just like any other TS cases, suppressing tics can be exhausting and stressful, causing my tics to worsen once I stop holding them.

It was my father who had the hardest time dealing with it. He often finds himself greeted by a new tic I exhibit every time he comes home from his work abroad. My motor and vocal tics, which he considered as mere “habits” that I have formed, made him very furious at times. I knew back then, that I could not blame him for his, oftentimes, harsh reactions. But I was aware that being their only child, seeing me tic frustrates him and my mother more than any other person in the world. Only later in my life that I found out they were simply afraid of what kind of future might await me.

In 1993, I was referred to a Neurologist by our family Ophthalmologist who has noticed my unusual eye-blinking tics. After a few visits, series of questions and medical tests, I was officially diagnosed with Tourette Syndrome. There was an instant relief for me when I heard that it actually has a name, and that it is NOT a psychological disorder like what many people have thought, but a NEUROLOGICAL condition caused by a chemical imbalance in the brain. However, that first diagnosis was not enough to convince my father. It was only until my third diagnosis and counseling from a Neuro-psychiatrist that swayed my father to understand that it was not easy to have TS. Since then, I have been given utmost support and better understanding by my parents-something that I have always needed.

In 1997, I became a member of the Tourette Syndrome Association based in New York. Since then, they have been sending me a number of reading materials and newsletters that they publish quarterly. It has also given me the chance to get in touch with other people with TS from other countries, providing me more medical information and inspirational stories.

I was prescribed with Haldol, Risperdal and many other medications by my past three neurologists. However, in 1998, I made a personal decision to refrain from any form of neuroleptics, because of the possible side-effects and expensiveness of these drugs. I knew there would be consequences, but I was determined to live with TS, and simply try to do my best in everything that I do.

I graduated from DLSU-CSB in 2000 with a Bachelor’s Degree in Industrial Design. Now at 24, I work as a Senior Industrial Designer in one of the country’s most respected design firms. Presently, I am also with a vocal-acoustic group, performing regularly in a number of bars & restaurants in Metro Manila.

My tics are still very evident. People still stare at me, some even laugh or get irritated when I tic. In fact, my tics have obviously worsened in the past few years, due to the stressful, yet enjoyable lifestyle I’ve chosen. They subside though, when I relax. However, I believe that having a normal life is still a choice laid upon my jerking hands as a gift from God. I face clients with my tics. I perform in front of a crowd with my tics. Tourette Syndrome is not a hindrance to achieving a normal and enjoyable life. It will always be helpful though, to be diagnosed correctly to avoid the perils of misconception and wrong diagnosis. Moreover, support, understanding and a great deal of patience exerted by family and friends help a lot in this constant battle in life faced by people with Tourette Syndrome like me.
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What you have just read is a true to life story of a Filipino guy with Tourette Syndrome, a very active member of the Philippine Tourette Syndrome Association. I hope that with this letter, others will come out and share their own stories. Or perhaps you can comment on this article. Thank you.

Please do understand....

I recieved a letter from a 17 year old kid. The moment i read it, it just blowed my heart away, empathy began to rise. The kid told me to post this in the site hoping to touch the hearts of parents and other people who has a loved one with TS. I immediately posted for the same purpose. This is very special to me because this is a filipino kid with TS, and an intelligent one!
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Hi, i came across your site and im impressed with all the information you got here. This is what i usually do if im not at school...browsing the internet for some stuff. Anyway, i wouldn't want to give off my name ( hiya ako eh! baka sa susunod may guts na ako :-) ) i wrote to just let out the feeling i've been having for a very long time. i was diagnosed to have TS when i was just 10. at first sabi ko sa sarili ko...ano yun???? parang kakaiba yata! i understood my disorder when mama explained to me everything. honestly nung yung doctor and nag-explain..wala akong naintindihan. anyway, good thing my mom had her way to explain it all to me. i knew then that i was different. nagpasalamat na lang ako na hindi maapektuhan ang aking pag-iisip. dibah?! mahirap para sakin...for the reason that most people don't have a clue what's happening to me. alam mo, naisip ko na lang i don't need to explain anything to them. pero minsan parang kelangan ko na ring iexplain just to let them know that this is what i've been going through for 7 years already. it's been very difficult. sometimes its not even the disorder anymore...it's what other people would say or think about me. maybe they were thinking that i'm crazy! i hope people can really be educated about the disorder. i know there are a lot out there that are being diagnosed with Tourettes everyday. family support is a big thing....if my family would not support me, i wouldn't be as positive as i am right now. next is public education, so they will know the reasons behind the ticcing. next is professional support in all aspects ( physical and more on psychological). and i more thing...i hope doctors will empathise to the one being diagnosed... minsan kasi nahahalatang bigay lang ng bigay ng gamot okay na. it's more than the medicines actually. other kids out there wanna be healed emotionally...not really physically.
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the letter is a very powerful one, inviting people from all walks of life to understand somebody who has Tourettes. I hope this letter can be viewed as one of the reasons we have to embrace what we have and not be ashamed of it. If you have your own story please send it so that other people will become aware that they are not alone.

Deep Brain Stimulation

Deep Brain Stimulation (DBS) has been tapped upon as a surgical procedure for Tourette syndrome. This procedure is considered to be potentially dangerous and very expensive. Because of those reasons, DBS will not likely to be considered as an option for treatment for the majority of people who have Tourettes. According to the Tourette Syndrome Association in the US, DBS should be considered only as an experimental treatment modality for only a small minority of people or those that only have extreme cases of TS. There were actually two programs which aired last 2006 (Discovery Health Cable Channel and Miracle Workers on ABC) that featured DBS for two patients who have extreme cases of Tourette syndrome. One is a 50 year old male and a 19 year old female who both underwent Deep Brain Stimulation.

What is Deep Brain Stimulation? DBS is a surgical procedure which involves the implantation of a medical device called a brain pacemaker which primary function is to send impulses to specific parts of the brain. As a procedure it was approved for the treatment of essential tremors by the Food and Drug Administration (FDA) in 1997, for parkinsons in 2002 and dystonia in 2003 taking note that it hasn't been approved for Tourette syndrome.

"The deep brain stimulation system consists of three components: the implanted pulse generator (IPG), the lead, and the extension. The IPG is a battery powered neurostimulator encased in a titanium housing, which sends electrical pulses to the brain to interfere with neural activity at the target site. The lead is a coiled wire insulated in polyurethane with four platinum iridium electrodes and is placed in one of three areas of the brain. The lead is connected to the IPG by the extension, an insulated wire that runs from the head, down the side of the neck, behind the ear to the IPG, which is placed subcutaneously below the clavicle or in some cases, the abdomen.[4] The IPG can be calibrated by a neurologist, nurse or trained technician to optimize symptom suppression and control side effects.[citation needed] DBS leads are placed in the brain according to the type of symptoms to be addressed. For essential tremor and Parkinsonian tremors, the lead is placed in the thalamus. For dystonia and symptoms associated with Parkinson's disease (rigidity, bradykinesia/akinesia and tremor), the lead may be placed in either the globus pallidus or subthalamic nucleus.[5] All three components are surgically implanted inside the body. The right side of the brain is stimulated to address symptoms on the left side of the body and vice versa." (Wikipedia, July, 2007)

The actual procedure of DBS involves pre-operative preparations such us identifying the neurosurgical target with the use of an MRI (magnetic resonance imaging) or CT Scan (computed tomography scan). During operation, the patient is placed on a local anesthesia and the patient remains awake all through out the procedure. A craniotomy is then performed and a DBS lead is placed in the target area unilaterally or bilaterally depending on the patient's symptoms. Then the IPG and the extension are connected to the lead. These fixtures all work to promote effectiveness of the surgery performed. It is programmed to further maximized its effectiveness. The battery life usually lasts up to 3-5 years and needs to be replaced.

The DBS procedures already done documented successful outcomes for TS patients but up to this point this specific procedure is still on experimental status. Since 2006, there has only been 5 published reports on DBS, all of them documened significant reduction in tics and in symptoms of obsessive- compulsiveness.

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Wikipedia

Tourette Syndrome Now What?

Tourette Syndrome Association

Pools of Water

This is a letter from a Proud Mother of a kid with Tourette Syndrome. I would like to share this to everybody for inspiration hoping that this letter would serve as medium to overcome difficulties of dealing with TS.


This story reflects the heartache and love than can come from parenting a Tourette child. The story of Keith, a young ballplayers with big blue eyes that must concentrate harder than ever before to "keep them open" when throwing a pitch, this wonderful mother shares with us what it felt like to learn her child had Tourette's from watching a network talk show and how she and her husband have learned that although they cannot "fix" their son, there is also nothing for them or him to be ashamed of either.

How wonderful for all the information on Tourette Syndrome. A few years ago my middle boy was diagnosed with Tourette's. Around the age of eight my son began blinking his eyes. Those big sky blue eyes soon became squinted almost all the time. I missed seeing the color that look like pools of water. Soon, other parents began to ask me if Keith had allergies. At first the doctor believed that Keith had developed nervous tics. Child hood tics that would disappear in a short while. Instead Keith started grunting , sniffing and, scrunching up his face. This time I took him to the doctor to have allergy tests done. The test came back ..... no allergies. My husband and I were instructed to ignore the tics. The more we brought it to Keith's attention the more he would tic. This was the doctors thoughts. As these symptoms became more noticeable my husband developed other thoughts. He believed that we could demand Keith to stop. He believed that this was just a bad habit that we allowed Keith to develop. This made for trying moments of the wills. I tried to keep my husband from nagging our boy and my husband along with his father believed that it needed to be stopped. One day on a "network talk show"they had children with severe symptoms of Tourette. My heart went out to these children. Then they talked to a boy who had more mild symptoms. My mouth fell open and my heart broke. This boy was grunting and blinking and scrunching up his face exactly like my son does. I went right to the phone and called our doctored. I told him about the show and my thoughts that Keith's tics may be Tourette. His words pierced my heart ,two simple words,"I agree. I'm going to get him an appointment with a specialist." It was a long wait until that appointment. I knew nothing about Tourette's other then what I had seen on television. I thought about the more severe tics and worried. Do these tics continually get worse and worse until they can no longer play sports. As I looked out at him on the pitcher mound blinking and throwing the ball. Then later grunting and hitting yet another home run I had to stop and face what was in my heart. Maybe next year he won't be out there. How could I ever tell him that.

This all came from no education on the subject and from talk shows putting the most dramatic stories out to the public with very little explanation. He was diagnosed with Tourette's and it hasn't slowed him down one bit. He is still pitching for his team and hitting home runs and grand slams. While pitching his tics increase but he has taught himself a little pattern so his eyes stay open while he throws. His team was undefeated for the past two years and won all championships. His soccer team was also undefeated and won their championship. He also plays great in basketball with only one loss for the season. With this and trick biking, rollerblading and snow boarding he has shown to me over and over that Tourette hasn't slowed him down in any way. He still loves and enjoys everything he always had.

It took his father a little bit to get use to the idea that he could not fix his son nor did we want him to. We look at Tourette as just a part of Keith ...like his blue eyes. Nothing to be ashamed of and never to be used as an excuse.
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www.tourette-syndrome.com

World’s First Genetics Resource for Tourette Syndrome Research

One breakthrough in Tourette syndrome research has captured major publications and newsletters about TS from a wide variety of sources. Dr. Mathew State, a Yale University researcher has identified a specific gene defect in a small percentage of people with TS. The researcher claims that the research he did will be able to yield more researches that will identify exact causes and treatments for the disorder. He even mentioned that the research was far behind prior to the identification of the gene. For this kind of drawback, the Tourette Syndrome Cell and DNA Sharing Program was formed from the collaboration of the New Jersey Center for Tourette Syndrome and the Tourette Syndrome Association of New Jersey. Dr. Jay Tischfield, Chair of the Rutgers Department of Genetics and Director of National Institute of Mental Health Center for Collaborative Genetics Research on Mental Disorders, and Scientific Director of the Rutgers Cell and DNA Repository, will direct the collect and storage of the DNA samples, cell lines and other clinical data from people with Tourette syndrome including their families. These will be shared worldwide in order to identify the inherited factors that may be responsible for the development of the disorder and its co- occurring disorders. Dr. Tischfield found the program to be very useful for current researchers for Tourette and will also be useful for attracting new researchers.

“The TS DNA sharing would grow the knowledge-based economy of the state while improving the health and economic welfare if its citizens,” adds Dr. Tischfield. “These are exciting times. With the recent identification of a TS gene defect plus the first TS DNA bank, experts worldwide are poised for huge advances in the field of TS research--advances never before imaginable (TSANJ, 2006).
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Tourette Syndrome Association of New Jersey

Conventional Approach to Tourette Syndrome Treatment

Tourette Syndrome has now been offered various types of treatment options. The most conventional one is pharmacotherapy or the use of medication as treatment. The medications are used to target specific symptoms of Tourette syndrome and its co-occuring disorders. There are a lot of new medications coming out that proved to be effective in treating medications, there are also cases where 2 or more medications are being taken concurrently. This kind of therapy often makes drugs more effective. But we all need to also consider that these drugs are effective but can also exaserbate certain symptoms of Tourette syndrome.

MEDICATIONS TO REDUCE TICS
• Neuroleptics (tranquilisers): They counteract dopamine over-activity by blocking dopamine receptors.

Clonidine (Dixarit, Catapress)
Haloperidol (Haldol, Dozic, Serenace)
Pimozide (Orap)
Risperidone (Risperdal)
Mellaril
Navane
Fluphenazine (Prolixin)
Sulpiride (Dolmatil, Sulparex, Sulpitil)
Clonazepam (Rivotril)

Side effects: Patients need to be monitored carefully, there is a risk that they may develop an involuntary movement disorder called tardive dyskinesia. Other side effects include drooling, contraction of the facial and neck muscles, slow movement (bradykinesia), restlessness, tremors, fatigue, depression, anxiety, weight gain, irritability, dizziness, headaches, and insomnia. • Botulinum toxin (BTX)Tiny amounts of this chemical poison, which comes from the bacterium Clostridium Botulinum, were found to temporarily paralyse muscles and nerves. BTX has therefore been used as a treatment option for cerebral palsy and dystonia. In Tourette, it is injected into the muscles involved in tics.

MEDICATIONS TO REDUCE OBSESSIVE COMPULSIVE TENDENCIES
• Antidepressants: These drugs increase the concentration of serotonin within the central nervous system and enhance serotonin's neurotransmission activities.

Clomipramine (Anafranil)
Fluoxetine (Prozac)
Sertraline (Zoloft)
Fluvoxamine (Luvox)
Paroxetine (Seroxat)
Effexor
Lithobid
Norpramin)
Paxil
Tofranil
Wellbutrin

Side effects: Drowsiness, blurred vision and nausea.

MEDICATIONS TO REDUCE ATTENTION DEFICIT HYPERACTIVITY DISORDER TENDENCIES
• Stimulants

Methylphenidate (Ritalin) - See our fact sheet on Ritalin
Pemoline (Cylert)
Dextroamphetamine (Dexedrine)

Side effects: They may increase tics, cause tremors and reduce appetite.
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Henry Spink Foundation

What Exactly is Tourette Syndrome

SYMPTOMS:
Understanding more of Tourette syndrome may lead you to notice some of its most common symptoms firsthand, especially the ones we can observe outright. Many resources have presented quite a bit of information about the symptoms of Tourette syndrome. But one needs to understand that the symptoms of the disorder may be exhibited in a manner ranging from mild to severe. And according to the most recent description of Tourette syndrome, which is a neurological disorder characterized by motor and vocal tics, the symptoms of Tourette are categorized according to this description--- motor and vocal tics respectively. Each category of tics is presented furthermore into simple and complex.


It has been mentioned in this paper early on that tics are sudden, repetitive movements. It is important to understand that these tics are not manifested by the individual purposely. The symptoms are involuntary movements and are preceded by a certain kind of sensation that goes away once the symptoms are executed. Every individual do not experience the same kind of relief most of the time. For other people with the disorder, performing the movement provides enough relief. But others find doing the movement faster and in repetition that may lead to a feeling of greater ease. In some cases though, these urges may only provide relief when pain is already felt on the involved muscle or muscle group. Depending on the age of the individual, some tics can be suppressed in a given time. For children diagnosed with the disorder, oftentimes they are unable to recognize the occurrence of tics hence they are unable to suppress them. Dr. Samuel Zinner (2004) even mentioned in his publication that the suppression is even worse than the tic itself because this can cause a rebound phenomenon and I quote “Tic suppression usually results in a rebound phenomenon at a later—safer, as it were—time and place (such as when the child returns home from school) during which the severity of the urges that had been suppressed compels more frequent and intense tics.”


During times of excessive anxiety or stress, these tics may worsen with considerable varying degrees of intensity and frequency but disappears when the individual is under concentration and are absent during sleep. The most frequent, severe or intensified symptoms of the disorder can be experienced before the mid- teen years and said to improve in most cases during late teens and early adulthood. According to the Tourette Syndrome Fact Sheet (2006), an estimated 10% of those affected have progressive and disabling symptoms that last into adulthood.


For more detailed enumeration of the symptoms, the table below presents the simple and complex symptoms for both the motor and vocal tics.

MOTOR AND VOCAL TICS

Simple Motor Tics: Facial grimacing, Shoulder shrugging, Head jerking, Eye blinking, Nose twitching, Limb jerking, Abdominal tensing, Wrist snapping, Jaw thrusting

Complex Motor Tics: Head shaking, Touching the Nose, Kicking, Touching other People, Echopraxia (copying of movements done by others), Smelling objects over and over, Stomping, Jumping, Copropraxia (obscene gestures), Various face and neck contortions, Jabbing, Self-injurious Behaviors

Simple Vocal Tics: Screaming, Sniffing, Grunting, Throat clearing, Barking, Coughing, Squeaking, Blowing, Sucking sounds, chirping, whistling, Snorting, Yelling, Laughing

Complex Vocal Tics: Palilalia (repetition of one’s own sounds, words or phrases), Echolalia (repetition of the words of others), Coprolalia (uttering of undesirable or obscene words or phrases and/or swearing), Stuttering and various changes in the pitch and volume of one’s own speech

It is imperative for your information that the listing above is not inclusive of all known motor and vocal tics. The symptoms listed are the ones oftentimes been recorded in most of the studies already done.

CO-MORBID DISORDERS:

Based on the early passages of this paper indicating that Tourette syndrome is a common denominator resulting from a combination of tics, attention deficit hyperactivity disorder, obsessive-compulsive disorder, and other behavioral problems (Jancovic, 2001), researches point out that there are other disorders associated with the one’s already mentioned that are occurring together with Tourette syndrome. According to the Medical Network (2006) in an article written by Maria Andres, researchers have found that from the American’s general population of individuals diagnosed with Tourette syndrome, many individuals, while having the disorder, also displayed symptoms associated with the other disorders mentioned above. And a number of percentage account to individuals with self- injurious behaviors.

CAUSES:

Researchers point out to common causes of Tourette syndrome. For one thing, they say that it is caused by an imbalance of the brain’s production of a very important neurotransmitter called dopamine which was already mentioned earlier in the chapter. Another reason pointed out to an abnormality in the functioning of certain brain structures responsible for the make up of Tourette syndrome which was also mentioned in the early passages. But the most researched cause of the disorder has been reported to be brought about by the whole paradigm of genetics. Genetics has said to play an important role in the disorder. The disorder is inherited in an autosomal dominant manner which means that an individual has a 50% chance of passing the gene to his or her children (NAMI, 2006). But this does not mean that everyone will show symptoms. It is believed that 70% of the females and 99% of the males with the gene responsible for Tourette syndrome will exhibit the symptoms. This also accounts for the reason why males are more affected than females. And it is presented that approximately one in ten children who inherited the gene from their parent will exhibit symptoms severe enough to require medical treatment (Tourette Syndrome Fact Sheet, 2006). Other causes of the disorder account to 10- 15% of the remaining Tourette syndrome cases. And these are extreme stress, psychological trauma, drug abuse, PANDAS (pediatric autoimmune neuropsychiatric disorder with streptococcal infection), some psychiatric conditions and other medical conditions.

PROGNOSIS:

The prognosis for Tourette syndrome is regarded as generally good. Since most of the cases exhibit mild form of tics, most of them do not even require medical attention. This means that approximately 30% of the people diagnosed with the disorder will have a decline in the severity and frequency of tics, another 30-40% will have a disappearance of the symptoms by late adolescents and the 30-40% remaining cases will experience the moderate to severe form through adulthood (Medical Network, 2006). The condition is not degenerative and will not, in any way, affect the intelligence of the person. The important aspect is that the neurobehavioral disorders existing within the course of the illness may continue and cause impairment in adulthood.

DIAGNOSIS:
Diagnosis of Tourette syndrome is perhaps one of the most challenging aspects of this disorder. A few factors account to this one. First is the disorder itself. The spectrum of its symptoms makes it hard to distinguish the disorder from other disorders with similar symptoms. Another complication is that some symptoms appear to be within normal behavior. The second factor would be the individual. In some cases, diagnosis is hard for some individuals who can literally suppress their tics in public or during the diagnosis with a medical doctor. Third is the environment. Some people may regard that the symptoms are psychotic outbursts therefore disregarding the idea of something more connected with Tourette syndrome. Truly diagnosis is practically one of the hardest parts. It is also said that some individuals may have visited quite a number of doctors before the eventual diagnosis of the disorder. Considering all these complications, experts explored the use of a guide to aid them in the diagnosis of the disorder. Criteria used underwent careful scrutiny and eventually led to the use of the Diagnostic and Statistical Manual of Mental Disorder (DSM-IV). This manual is used for a selection of disorders including Tourette syndrome. It states that both motor and vocal tics should be present at the course of the illness but not necessarily concurrently, the tics should occur nearly everyday for a period of more than one year without remission of tics for more than three consecutive months, the age of onset of symptoms should be less than eighteen years, and the condition must not be due to medication and/ or another medical condition. On the other hand, these criteria are helpful together with observation and interview of the individual and family members.

TREATMENT/ MANAGEMENT:

It is widely reported that Tourette syndrome has no known cure. The key point is to control the symptoms of the individual with it. The treatment primarily focuses on what symptoms are currently present so as to initiate pharmacological therapy or therapy by using medications. Aside from controlling the symptoms, it is consequential to also focus the treatment and/ or management into alleviating the symptoms especially those that are most debilitating to the individual or those that basically impede with daily function. Aside from medications, many researches have documented the use of treatments like behavioral modifications and other alternative strategies such as group counseling or counseling in general which are all helpful in the treatment and/or management of Tourette syndrome. Dr. John Walkup (2007) mentioned that some individuals cannot tolerate the medications’ side effects so they are exploring other alternatives.

An Update on the International Scientific Symposium on Tourette Syndrome: Lillehammer, Norway

The Tourette syndrome International Scientific Symposium held last June 21- 23 at Lillehammer, Norway was very successful indeed. There were 16 speakers who presented at the time. The organizers were kind enough to post their presentations online on pdf format. Hence, I would like to share with you these articles. These are very recent articles about Tourette syndrome hence would be very useful for research and education purposes.

• Conference Syllabus
• Diagnostic Assessment of Tourette Syndrome and Tic Disorders
• Genetics of Tourette Syndrome and Related Disorders
• Pathophysiology of Tourette Syndrome
• Evidence of Vulnerability and Placticity in Neuroimaging Studies of Tourette Syndrome
• Tic Disorders: The Importance of Co-Morbidity
• Tourette Syndrome and OCD
• Aggressive Symptoms and Tourette Syndrome
• Quality of Life Among Youth With Tourette Syndrome
• Clinical Issues of Patients with Tourette Syndrome
• Tics, ADHD, and Stimulant Medications
• Clinical Features of Children with Tic Disorders
• Current Status of Tourette Syndrome Research in the USA
• Pharmacological Treatment of Children with Tourette Syndrome
• Behavioral Treatment of Tics and Co-Occuring Conditions
• Deep Brain Stimulation
• Clinical Guidelines for Deep Brain Stimulation

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Tourette, 2007. Norwegian Resource Center for ADHD, Tourette Syndrome and Narcolepsy

Philippine Tourette Syndrome Association: Objectives

Philippine Tourette Syndrome Association (PTSA) is the very first Tourette syndrome non- profit organization in the Philippines.

We cater to support TS patients and their families, to educate the Filipinos about Tourette syndrome and to serve as advocate for Filipinos diagnosed with Tourette syndrome.

Join us in our mission to make TS known in the country and make a significant helpful impact in the lives of Filipinos diagnosed with TS.
……………………………….
The logo was made by Marlon Barnuevo, a TS patient and an industrial design specialist. Actually, the logo was made for Rowena’s advocacy site for TS. Rowena decided to use it as the organization’s logo for Marlon’s credit. The logo emphasizes the carefree TS individual. A person, despite the condition can handle adversities in the best way they can. The kite also symbolizes the TS patient on that perspective.

The Philippine Tourette Syndrome Association: History

The history of Philippine Tourette Syndrome Association can be dated back last February 16, 2007 when a group of doctors from St. Luke’s headed by Dr. Joven R. Cuanang decided to form a support group for Tourette syndrome. The decision was even emphasized when Marlon Barnuevo, a TS advocate and a patient of Dr. Leonardo Fugoso ( head of the Movement Disorder Center of St. Luke’s) and Maria Rowena Victorino, a registered nurse- counselor and a TS advocate, were also invited to join the core- group formation on that day. All of them made a breakthrough to form the first core- group of Tourette syndrome in the Philippines.

From that day on, some of the doctors that were involved specifically Dr. Toom and Dr. Tin (neurology doctors of St. Luke’s) with Marlon and Rowena had subsequent meetings for the core groups' foundation. This led to the first ever lay forum for Tourette syndrome in the Philippines called Twitch and Shout: A Closer Look at Tourette Syndrome.

Months after, Marlon and Rowena formed the Philippine Tourette Syndrome Association. Since it’s the Philippine’s first TS organization, we want to somehow emphasize our country for finally recognizing the impact of Tourette syndrome in the Philippine setting hence putting the name Philippine first.

The group is still fresh and still on the verge of polishing everything up to maximize its purpose and benefit for those we cater to. There is a rich future ahead of us. The group has made a pioneering work and a great decision to uplift the Philippines in terms of progression of organizations that cater to medical clientele. Not only that, we are also making it a point to maximize the services for patients and families with TS by looking at a wholistic approach so that they will be helped in the best way possible.

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Tourette Syndrome has been around for more than three centuries now. Its existence was even questioned during the time when Tourette syndrome was very scarce (shortly after Dr. Tourette's death). But when doctors from New York City, USA back in the 70's documented 485 cases more of Tourette with very detailed descriptions of the people who had it, the breakthrough of interest for the disorder began eversince. And so from then on the USA have developed new studies and researches about Tourette syndrome.

The Philippines started looking after the existence of Tourette syndrome in the Philippines in 2007. Marlon and Rowena started it all. Truly our country has a lot to learn about the medical advancements of Tourette syndrome. But as what the old saying says, "It's never too late." The PTSA definitely looked at the impact of Tourette syndrome in the Philippines and eventually helped the diagnosed and those people involved with it. We have so much future ahead of us, but with your help and everybody's help we can continue building the organization and help educate the public about TS.

A Filipino Doctor's Perspective on Tourette Syndrome

Video taken from the Twitch and Shout Lay Forum: The Philippines' first lay forum on Tourette Syndrome, March 26, 2007

A Filipino Mother's Perspective on Tourette Syndrome

Video taken from the Twitch and Shout Lay Forum: The Philippines' first lay forum on Tourette Syndrome

A Filipino- diagnosed Talks About His Disorder

Video taken from the Twitch and Shout Lay Forum: The Philippines first lay forum on Tourette Syndrome, March 26, 2007

International Scientific Symposium on Tourette Syndrome

Dear members of associations for Tourette syndrome:

Please see enclosed program and registration form for the InternationalScientific Symposium on Tourette Syndrome, June 21. - 23. 2007Lillehammer, Norway. We would appreciate if you could update your website andnewsletters with this information.Online registration and more information on hotel, social activities,speaker and poster presentations can be found at our website.Welcome to Lillehammer in June!Feel free to forward this e-mail to professionals working with Tourettesyndrome in your country,

Best regards,
Stale Tvete Vollan
Adviser in communication and member of the organizing committee,
National Resource Center for AD/HD,
Tourette Syndrome and Narcolepsy &International Scientific Symposium on Tourette Syndrome in Lillehammer
Ulleval University Hospital
NO-0407 OSLO, NORWAY
Office: +47 23 01 60 30Fax: +47 23 01 60
E-mail: stale@nasjkomp.noHELPFUL LINKS:

*All about the International Scientific Symposium on TS can be found here http://www.tourette2007.net/

The Pathophysiology of Tourette Syndrome

When we talk about the pathophysiology of a certain disease, we mean to say the study of abnormal functions in the body and how disease processes work. For Tourette syndrome, looking at the structures of the brain and other important chemicals that said to be responsible for the disorder is also a consequential review.

It is widely reported that the pathophysiology for Tourette syndrome had not been fully understood. Dr. Kirk Frey and Dr. Roger Albin presented that there were only limited insights as to what abnormalities could have been underlying Tourette syndrome when traditional neuroimaging techniques were used. They also said that because there were only a few persons diagnosed with Tourette syndrome who die early in life, they were limited to a few post-mortem brains to study and that these brains came mostly from adults. Nevertheless, most researches point out to neurotransmitters in the brain, their circuitry and a few structures that are responsible for the make up of Tourette syndrome.

Considering neurotransmitters in the brain, researches say that Tourette syndrome is a result from an abnormal activity in a chemical in the brain called dopamine. Neuroimaging studies revealed that dopamine is produced excessively in persons with the disorder. Dopamine is a kind of neurotransmitter in the brain. Aside from norepinephrine, dopamine is a catecholamine responsible for controlling movements and regulating hormonal responses. Dopamine is also the one responsible for psychiatric symptoms such as psychosis.

There are three specific circuits it undergoes. First, the regulation of bodily movements. Dopamine is involved in the production of tics in a person with Tourette syndrome. The excessive amount of dopamine that regulates in the structures of the brain, is said to be one of the emerging causes of the reproduction of the repetitive, uncontrollable body movements. Whereas in a person who exhibits rigidity in muscle movements or there is difficulty in moving is equated to practically absence of dopamine circulating.

The second circuitry is for emotion and cognition. Abnormalities in this system of circuitry are the one responsible for the production of psychotic manifestations.

The third is for the regulation of the endocrine system. Its primary action for this organ is to direct the release of hormones into the bloodstream.

Information about dopamine is essential in the understanding of where it actually goes wrong in the brain in the case of Tourette syndrome. Knowing that its excessive reproduction is important in connecting the occurence of tics of people with Tourette syndrome is essential as well. The circuitry passes through deep within the brain in a structure called the basal ganglia. But because all the circuits inside the brain happen simultaneously, it also involves not only the basal ganglia but also some other parts of the brain such as the cortical, subcortical regions of the brain, the thalamus and frontal cortex, all are located deep within the fore brain. Each structure has its own function in the transmission of the neurotransmitters in the brain. All is described to be but one whole operating system. In an article written by Steve Olson, he mentioned that the operating system described in a person with Tourette syndrome, according to Dr. Jonathan Mink, a neuroscientist in the University of Rochester Medical Center in New York, is in a way buggy. This description again goes back to studies from neuroimaging techniques that demonstrated abnormality in dopamine release, dopamine reception and pathways involved in the transmission of this neurotransmitter.

The Man Behind the Eponym Tourette Syndrome

Georges Albert Eduardo Brutus Gilles de la Tourette, a French neurologist was born on October 30, 1857 in a place called Saint-Gervais-les-Trois-Clochers in France. Gilles was the eldest among four children. There was no enough documentation to describe how Gilles was in his early childhood. But reports said that Gilles started his education where he was already known to be an exceptionally talented young student.

In as early as 16 years of age, Gilles started his medical education in Poitiers, France. He continued this in Paris in Salpêtrière Hospital where he became a student, secretary and in-house physician of his professor and mentor, Jean- Martin Charcot. Charcot was impressed by Gille’s intelligence so he helped Gilles in so many ways. Since 1884, Gilles had been exposed to Charcot’s work. And at this time, Charcot had begun his studies about hypnosis and hysteria, a complex neurosis that can take in many forms (J.P Chaplin,1985). Charcot used the technique of hypnosis to study the symptoms of his patients. Gilles soon became the consultant physician of Charcot and his primary work for Charcot was to instruct and prepare the patients for public presentations. Gilles’ interest in the subject of neurology grew more and more and had been even influenced by Charcot so much that Gilles started to publish articles about Charcot’s field of interest which were hypnosis and hysteria, one of which is a documentation of Charcot’s theories. Charcot’s marked success also became one huge accomplishment for Gilles as he became a contributor to Charcot’s work that became widely known throughout Europe. Sigmund Freud even became a part of his sector at that time.

1885, when Gilles became the permanent instructor of forensic medicine, this year also became the start of the research for Tourette syndrome.
Early encounters with Tourette syndrome had been reported in 1825 by Itard who was also a French physician and educationalist. He reported a very peculiar behavior of a French woman called the Marquise de Dampière. The behavior included strange body movements accompanied by echolalia or the repetition of words or phrases (J.P. Chaplin, 1985) and coprolalia or obsessive use of obscene words (J.P. Chaplin, 1985). After Itard’s death, 60 years later, Gilles de la Tourette published a study called “Étude sur une affection nerveuse caracterisée par l'incoordination motrice accompagnée d'écholalie et de coprolalie' or the disorder of the nervous system characterized by motor incoordination in combination with echolalia and coprolalia according to the archives of neurology in France. This was the publication that documented the behavior of Marquise de Dampière and eight other similar cases which he called 'Maladie des Tics'. Because of his careful study of motor disorders since 1881, he was the first one to understand the connections between the various manifestations of the symptoms described in his publication. And in honor of this understanding, Charcot who was the director of the Salpêtrière Hospital, named the disorder after Gilles and so the eponym Gilles de la Tourette came about.

After his published work in 1885 about Tourette syndrome, he was awarded Godard Award the next year because of his thesis that found a neurological diagnosis by analyzing the patient’s footprints.

The following years became much more satisfying for Dr. Tourette when Charcot appointed him to be the chief physician. His duties included developing new therapies and making them suitable for practice, teaching medical students, managing the wards in the hospital and publishing articles in the medical journals. He also had various interests beyond the medical field when he became the literary critic of a weekly newspaper. Gilles undoubtedly had very fruitful practice as a doctor in neurology but settling down and having a family of his own were not far away from his plans. During the same year, he was married to his cousin who was ten years younger than him and with whom he had four children, two sons and two daughters.

Dr. Gilles de la Tourette could have gone a lot better in terms of his practice and contributions as a neurologist in France. But because of his reported shortcomings, the years thereafter provided no significant accomplishments for Dr. Tourette as he became so intensely absorb in only the things he was interested in specifically neurological disorders that lead him to overlook at some of the other important things to consider in his practice like neurological pathologies and experiences in other clinical cases which are also pertinent to his practice. Historical reports say that he became so critical which prevented him from gaining friends over the years. Despite this, he continued his work as a regular lecturer and chief physician under Charcot in the Salpêtrière Hospital.

In 1893 Gilles had experienced the most poignant times of his life when his son died because of meningitis followed by his mentor Jean- Martin Charcot to acute lung edema or a disease marked by excessive fluid volume in the lungs. Subsequently, during the same year Gilles was shot at the back of his head by a former female patient at Salpêtrière who alleged that Gilles had hypnotized her which caused her to lose her mental state. This was investigated and it was found out that the woman had been suffering from what we now call paranoid schizophrenia. It was then reported that hypnosis was not the cause of her loose mental state. The woman was treated at St. Anne in Paris and died in the hospital of St. Rémy at the age of 92. With Gilles’ wound at the back of the head, it was found out that it was only superficial. A surgeon by the name of Pierre Delbet treated him and Dr. Tourette recovered completely from it.

After that terrible year, Gilles de la Tourette continued his work in neurology and published two more volumes about hysteria. And in 1899, he changed his assumption that Tourette syndrome would result in mental illness in a person’s later life. The change in opinion was influenced by an associate named Louis Guinon. With Gilles’ determination and perseverance that despite his shortcomings with his behavior, he once again proved to other medical professionals that he was really an extraordinary and very talented physician. More years added to his accomplishments when he was appointed chief official physician of the world exhibition in Paris 1900 and was awarded “Honorary Officer of the Legion”.

Later on, Gilles’ health declined. In the year 1901, his health was forced to be criticized in the hospital. Although, historical resources knew little about what could really be Dr. Tourette’s disease, his disease had caused him to be more and more incoherent which left him psychotic for the remaining years of his life. Later on, neurological examinations revealed a diagnosis of paretic neurosyphilis, also known as general paresis or a disease of the central nervous system that begins with gradual loss of cognitive functions that leads to personality changes and eventually dementia. The disease involved many psychotic manifestations. He died at the age of 46 and was remembered by fellow colleagues as one of the most talented and assiduous physicians in Salpêtrière Hospital.With the development of Tourette syndrome later after his death, there were only 50 more cases of the disorder being documented between the years 1885- 1965. Because of this, physicians became skeptical of the disorder’s existence. But in 1978, there were four scientists in New York who reported 485 cases of Tourette Syndrome which they called “Gilles de la Tourette Syndrome”. Included in the study were intensive descriptions of 250 examination results and very detailed studies of 145 patients. Because of this breakthrough in Tourette syndrome research, interests concerning the disorder were raised up again and Hermann Krämer even mentioned that the new American behavioral neurologists embraced Dr. Gilles de la Tourette works and saw that the paradigm in this illness is the connection between the movement and the emotion.

Call for Filipino Research Participants: Tourette Syndrome

Title: Group Counseling for Filipinos Diagnosed with Tourette Syndrome

Research is under the University of the Philippines, College of Education, Diliman, Quezon City

Participant Eligibility:
1. Must be diagnosed with Tourette Syndrome
2. Absence or mild co-morbid disorder will be accepted
3. 18-35 years of age
4. If minor and interested, please secure consent from parents
5. All participants will have to secure certification from a doctor that you are safe to undergo a research process

Being accepted in the research means that you will have to participate from the beginning up to the end of the counseling sessions. There will only be 10 counseling sessions. The exact date and time will be convenient to all participants. The sessions can be done everyday or 2x a week, depending on the availability of all the participants. The sessions will only be conducted for roughly 5 hours maximum.

Benefits from the Research:
1. You will be a part of the first Tourette syndrome research in the Philippines
2. You will discover your own capabilities in coping with the disorder better
3. You will meet other Filipinos diagnosed with Tourette syndrome and be able to share and learn from yours and other people's experiences
5. You will contribute to the literature of Tourette syndrome in the Philippines and in the world.

IF YOU ARE INTERESTED, please contact me immediately.

Pictures from the Twitch and Shout Lay Forum

Twitch and Shout Lay Forum: A Closer Look At Tourette Syndrome

The first Tourette Syndrome lay forum was held last March 31, 2007 at the Cathedral Heights Building Complex St. Luke’s Medical Center. It was indeed a very successful forum wherein families, pre-school and sped teachers, doctors, counselors, students, and patients who are diagnosed with Tourette syndrome came altogether for the forum. The forum was facilitated by The Movement Disorder Center of St. Luke’s and the Philippine Tourette Syndrome Association. Being a co-founding member of the organization, I am honored to be one of the emcees of the said event. The registration was facilitated by Dr. Toom Vatanagul. Invocation was made by Dr. Judy Sevilla. Dr. Janet Santiago sang the national anthem. Opening remarks was given by Dr. Joven Cuanang. The first testimonial was given by a TS advocate and an industrial specialist, Marlon Barnuevo. The second testimonial was given by a mother of a 12 year old child diagnosed with TS, Ms. Obie Casimiro. Lectures were given by Dr. Dominic Jamora and Dr. Bernadette Arcena. We also had an open forum where participant asked questions about TS. The resource persons for the open forum were the doctors from the Movement Disorder Center headed by Dr. Leonardo Fugoso. The closing remark was also given by Dr. Fugoso. After that a little meeting about the support group formation was facilitated by Dr. Vatanagul, myself, and Marlon Barnuevo.

We had a number of participants who became the initial members of the support group for PTSA. Now that the support group is already formed, the by-laws, mission and vision are still going to be finalized. We have three working objectives for the support group (1) support system for families, patients and significant others, (2) educate the public about Tourette syndrome , (3) advocates for TS patients and families. We still have a long way to go with the sustainability of the support group, but with your support nothing is impossible.