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.