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9/12/2011

Admer and His Story

Admer is diagnosed with Tourette Syndrome who joined a writing contest in McDonalds Philippines, where he is currently working as a service crew. Fortunately, he won the writing contest. He wrote about his life with Tourette Syndrome and here is his piece:

"I’m Admer Barata from Mendez, Cavite. 24 years old. I have a disorder called Tourrette’s Syndrome and started working as a service Crew in McDonalds Tagaytay Taal at the age of 17.I’ve been working there for 6 years now. Before I applied in McDonald’s, there are questions and doubts that run through my mind such as:

Am I ready to work with other people in an environment more mature and different from school? How will I explain to them what I am going through? Will they understand me? How will other treat me knowing my disorder?

Tourette Syndrome is a Neurological disorder that causes involuntary and or unintentional movements or speaking called TICS. I was diagnosed with this disorder when I was in my 1st year in High School. I am taking medicine that helps me lessen my TICS. Unfortunately, there is no cure for Tourette’s Syndrome and I am one of those people who will carry it for life. It is unpopular and very rare disorder. I’ve been straight forward about my disorder during my interview in McDonalds. I told my manager everything about TS that they should know. McDonald’s has been considerate and accepted my application as long as my medical tests would show that I am fit to work. And it’s been my first ever work! It’s an opportunity for me to work here in McDonald’s for it is known globally as one of the top food-chains. Passing my application gave me confidence despite my long time fear that I will never find a good job because of TS. Being hired gave me a different outlook and challenged me to push myself more to keep these work. McDonald’s changed my life both mentally and emotionally, and financially as well. As a self supporting, my work helped me to sustain my continued medication, which is not easy. My medicine, regular checkup as well as my personal expenses cost more.

At my first year at work, my workmates gradually notice my involuntary movements (nodding, facial twitching and sniffing).It’s not easy. I’ve always been a laughingstock at work because of these. There are times that someone will embarrass me in front of other crews or bullies me during or out of work. But I didn’t fight them back or treat them bad in return. There are a few times may be when the bullying is too much and won’t stop till the end of my duty. But I didn’t give up, and will never be. I know that they tend to discriminate me because they know only a little if not totally unfamiliar of Tourette Syndrome. So little by little I explained to them what Tourette Syndrome is. They’ve been open-minded to people like me. They even feel pity for me at times when my TICS are attacking or when I’m running out of medicine. I gain strength, respect, and support from them, most things I need having Tourette Syndrome.

I do not just work for money and fun. I gain friends and knowledge every day. I learned things that can’t be taught in school and cannot be learned at home. While on duty I become more flexible associating from my workmates and managers to the costumers. I’m able to practice to separate my personal life from my work to be productive on duty. The good quality training the company gives to its employees made me effective on my stations and to be flexible. I learned a lot from it. I become more resourceful on duty, able to do multiple tasks at a time and give good service to the customers without compromising the quality of the products and the company. But at times I can’t please other people though I gave my best foot forward. Things sometimes are out of my hand and complains are being charged against me. On situation like these, I try to apply remedy by talking politely to the customers, apologizing and try to give them exactly what they are asking for. But if it won’t work I ask for the assistance of my workmates especially the managers. Made me wiser each time, reminds me to follow standard procedures and have a presence of mind to avoid conflicts with the customers or with fellow crews. Trainings and FUSOC still helps even though I’ve been to the company for 6 years. Made me effective crew on high peaks season or even on an ordinary day. Good relationship with fellow crews can lessen the pressure on duty whether its graveyard or morning-shift and whatever the station is. Learned to treat people fairly whoever they are and whatever their status in the society is. My experience for six years made me work with beginners nicely. I know they feel as I was as nervous and as clueless as them when I myself was a beginner. I give them a hand when they need to and teach them things they must know generously. Work is a big help for persons like me with TS. It is important to have things that would keep me busy and focused to lessen my TICS and to temporarily forget my disorder and be just like everybody else. My hard work has been rewarded when I was chosen to be the crew of the month for a several times and now as a candidate for crew chief. It inspired me to work more hard.

McDonald’s has been the way for me to meet for the first time a person with the same disorder. One of my co-workers knows him and introduced us. Even my managers supported me fully. Our management team helped me ask permission from the Head Office to shoot in McDonald’s for a documentary for a local TV station. The permission of the head office helped me a lot. The public was informed about Tourette Syndrome. Even the costumers recognized me and admired me for my strength. It’s very heart-warming to get commendations from them because it only shows that they appreciate me for what I am and what I have. My McDonald’s family has been helping me in so many ways. McDonald’s did not look at in a way that most people do. I’ve been accepted and treated as one of the members of its family. I’ve been given opportunities that I am thankful for. McDonald’s is my second family. There are people in that place that are very close to my heart.

They say there’s no harm in dreaming high. So I am hoping that one day, having learned a lot and proven myself at work, I would be a member of the management team. I would like to expand my knowledge and enhance my skills in McDonald’s. I am also one of the Advocates of our organization, Philippine Tourrette’s Syndrome Associaton (PTSA).I want to be an example to every individual with or without TS. I know that every day, each of us goes to different challenges in a society that tends to belittle people with disorders. Discrimination and bullies are always round the corner. I want to inform people that disorders and disabilities is not a hindrance to have a happy and normal life. My disorder is not a burden in my work. It humbles me and McDonald’s is just right here to open opportunities to people like me. And I won’t give them any excuses not excel more in this work. Again, this is Admer Barata and this is my Love to Make a Differennce Story.

8/24/2011

A Mother's Note About his Son Who Has Tourettes


the last time i wrote about his tourette syndrome was more than a year ago...at present, since classes started or even during summer vacation, his tics were rarely noticeable. t'was only during the lst week of classes maybe because of new excitement and pressure of going back to studying and meeting new people, new teachers etc. but as a whole until today, i can say that his tics are very minimal. his big brother teased him that he misses his tics. and just like every night that comes, i remind him to pray. i used to tell him that we pray to the Lord to remove his tics in His time but if it is Thy will, He gives us strength to accept it. i tell him that God has a reason why He gave him t.s. and it is not for us to ask why. what is important and we are thankful for  is He gave us the gift of life. He gave us so many blessings in life like his intelligence esp. in Math which many are having a problem at. i always tell my kids to share their knowledge to others esp. to those who are having problems with it. give free tutorials to your classmates and teach them well.

he just finished his 100 tabs. of magnesium and i plan to give him polynerve syrup next month. he said that he can't see any difference when he was taking them and now that he has not. anyway, i'll try the polynerve coz it is just like a vitamin for the nerves.

i continue to pray for him and for all the members of my family that we may all be united in supporting john j with this disorder. i suppose it helps a lot that he is in a small group where bullies are less to find. they are only 20+ in the room and the school has a population of less than 200 in high school. he is very active in whatever activity they have and i encourage him to join always. i am very glad his classmates are very supportive of him. he says there are a few who teases him but he says it's ok coz they are his friends.

he rides the ferryboat  when he goes to school and so he can relax there unlike in the jeepney, you are all cramped together and everyone stares when your body makes a movement. in the ferryboat, he can gaze at the sea while listening to his ipod. nobody stares at you and everyone seems busy with whatever they are doing like chatting usually with their companion. i suppose this has helped a lot too now that he's commuting thru the ferryboat and not the jeepn ey. he enjoys the ride a lot now he wants to be a seaman like hi dad.

whenever i mention some people who are still in the denial stage of acceptance, Ely butts in saying...yes, just like your husband before. i just tell him it's ok you're over it and i am happy that you have accepted the truth. he  loves his kids so much and it pains him a lot to know that jj has t.s. everytime he calls, he always asks about his t.s. and how it is. he's a lot happier now that i tell him that they are very minimal and hardly noticeable nowadays. i remind him though that tics may come and go so we just have to be ready and accept what the future has in store for his t.s. what is truly important is we have john j and we love him very much with or without his t.s.---mardi (a mother who has a son with tourette syndrome)

5/16/2011

Badong, a Taxi Driver with Tourette Syndrome in "Wish Ko Lang"






Badong, played by the actor John Fair, is a taxi driver with Tourette Syndrome
who has a daughter with a severe illness. How can he manage the situation while 
struggling with Tourette Syndrome himself...watch this touching short episode about Tourette Syndrome in "Wish Ko Lang",GMA Channel 7. The actor was coached by the two of  the members (Alec Loteria and Aileen Pacia) of the Philippine Tourette Syndrome Association.
(video courtesy of WKL)




3/01/2011

SAKSI Shoot


2/21/2011

Through Tic and Thin: A Closer Look at Tourette Syndrome


Organized by Level 4 Section A Group 4 and Section B Group 10

ORGANIZING COMMITTEE

Program Chairperson : Emerson Espano
Assistant Program Chairperson: Jhoanne Fungo

Committee on Program and Invitation
Joana Ferrer
Khamille Dimapilis
Joanna Marie Dy
Roman Escober Jr.
Wilhelm Rose Evangelista
Rose Ann Fernandez
Daryl Jade Garing

Committee on Physical Arrangements
John Rudolf Espiritu
Christian Faustino
Jessa Flores
Malia Gagelonia
Leo Jan Garcia

Committee on Registration and Reception
Mary Grace Evangelista
Sheen Espiritu
Xylene Cabayeron
Elaine Galang

Committee on Documentation and Evaluation
Anna Katrina Fernandez
Rizaldy Fernandez
Dian Karia Flores
Rochelle Escano

Committee on Finance
Marigrace Guisijan
Michelle Cindel Encarnacion
Clarissa Dionisio



4th Year Anniversary- Feb 16, 2011





2/16/2011

News on Q Shooting for Tourette Syndrome, GMA

PLEASE STAND BY FOR THE AIRING OF OUR TOURETTE SYNDROME EPISODE ON GMA CHANNEL  7



2/08/2011

PTSA's 4th Anniversary Par-tic!


EVERYBODY'S INVITED!!!!

Meet actual people with Tourette Syndrome, share experiences, join games with them, get to know them, enjoy the fun!!!

Please coordinate with Rowena at 0915.4424340
if you are interested to come...we will see you there!




1/28/2011

Ang "Tics" at "Blahs" ng Buhay Ko (The Tics and Blahs of my Life)

By: Andrei Salazar (a customer service representative, diagnosed with Tourette Syndrome)

tic: nailingon ko ang aking ulo sa kanan; "nakita ko ang totoong mundo kong ginagalawan"

tic: bumaling naman ako sa kaliwa; "nakita ko ang mga taong nangungutya"
tic: naitaas ko ang aking ulo; "Diyos ko, ikaw ang dahilan ng lahat ng ito"
tic: bigla kong naibaba ang ulo ko; "At ako'y nangumbaba at nagdasal ng patuloy na pag-unawa ng kapwa ko".
tic: kaliwang braso ko'y naihampas sa hangin; "At doo'y nakitang humiling"
tic: kanang braso ko nama'y biglang naibaling ; "Nang aking nahawakan ang kapalaran na kayang abutin".

blah: tugon ko sa mga taong hindi pa nakakaintindi; ng mga bagay at tunay na nangyayari
blah: tugon ko uli para ipaalam ang mga bagay na dati ay ako lang ang nakakaalam.

tic; blah; tic; tic; blah; blah; blah: marahil ay isang awiting kami lang ang may alam; ng mga tono at liriko na kami lang ang nakagagawa.
tic; blah; blah; tic; blah; tic; blah: sa isang banda nama'y nananawagan; kami'y unawain at pakinggan; pagkat alam nami'y hindi bingi ang lahat; sa totoo naming tinig at nararamdaman....







.

The One to Five of Coping with TS

The One to Five of Coping with TS

By: Guia Roa S. Soriano (A Labor and Employment Officer, diagnosed with TS)


I’ve been living with this on and of tics for like 15 years now. It is only when I was 20 years old when I was able to find it’s name, Tourette Syndrome. I admit it wasn’t easy at first, but through my own coping mechanisms I was able to conquer it. So I would like to share with you the 5steps that help me cope with TS.

1. Acceptance. I believe that to make the a life of an individual a lot easier, acceptance is one factor.

Acceptance from the side of the family that someone from their clan is having this different gift that He gives only to those who can handle it. I am blessed to have a family who, after being able to understand the diagnosis to me, never treats me differently. Just the same smart, stubborn, and pretty (oh yes am) lady member of the clan. Me and my family even joke at it whenever my vocal tics are becoming loud like, “anlakas naman nun.”

Acceptance from the side of your true friends. I am very lucky to have friends who had accompanied me in my journey in searching for the answers behind my tics. One of my friends is the one who saw the website of PTSA (ticawaywithme.blogspot.com then) and told me about it. Since then they’d been with me in looking for explanations. A line that my friend said that I will never forget, “isa ako sa mga unang nakaalam na may TS ka. Bukod dun wala naman akong ibang nakita. Hindi naman naapaektuhan ang productivity mo.”

Acceptance from your side. If you cannot accept that you have that special gift, don’t expect other to accept you. So start from there. Accept that you are one of the chose few. Remember according to research most of the people who have TS are those who are intelligent and beautiful/handsome.

2. Know that you are just like anybody else. We don’t need special treatment, it will just trigger the situation. Study like any other students do. Work like any other employees. Like what I said in the interview before, “we are just like any other people, meron lang kaming sound effects at choreogaphy sa katawan.” Would you believe that I even get invitations to host some events? (I am a cool emcee, try me.  )

3. Understand those who can’t. I know there would always be that stare from other people who don’t know what TS is. Let them stare for crying out loud. You won’t die of their stare. And whenever people laugh at you, let them laugh their heart out. Me, whenever people laugh at me because of my tic I just say in my mind, “buti na lang hindi sa inyo napunta ‘toh. Hindi niyo kasi maiintindihan. Poor you.” Let’s just say that we are more intelligent than them so let us be the one to understand.  Don’t expect everybody to understand you. Just understand them.

4. Learn to laugh at it. Since you cannot prevent people from lauging about it, learn to laugh with them. Like what they also say, “if you cannot beat them join them.” It won’t help if you will just go to one corner and fret over the situation. Believe me, when you learn to laugh about it sometimes, life will be a lot easier.

5. Pray. This will be your best armor in surviving a life with TS. So learn the art of constant praying. Pray that He may give you the willingness to go on with life. Pray that He will give you the strength to fight the battle. Pray to give Him thanks for that special gift.

1/21/2011

Real Stories: A Personal Essay of a College Student With TS

 
"My Personal Essay"
By: Rafael Francisco Zamora Bunye (a college student diagnosed with TS)

I've had quite a number of experiences that helped to define me as a person. Though they are not that many, I believe that those experiences helped shape the person that I am today. But in all of those, one sticks out the most. This is the main topic of my paper.

I have Tics. I have had it as a child but didn’t really understand what it was until I found that that unusual thing was called to be Tourette’s Syndrome. To those who may not know what it is, Tourette’s Syndrome, as defined by science, is a hereditary, neuropsychiatric disorder characterized by multiple physical tics and at least one vocal tic. It is also called Tics for short. In layman’s term, it is a disorder that is inherited from the parents which causes the body or some specific body parts to jerk otherwise make some sounds uncontrollably. With it being hereditary, I inherited my Tics from my father who inherited his Tics from his father and so on. When a person has Tourette’s, it is hard for him to control his reflexes and since I also have it, you might see my arms, legs or even my whole body jerking a lot. I would also make some sounds, which too is uncontrollable.

Having Tics would make it hard for me to somewhat socialize since people would always ask me why I’m jerking a lot or making certain sounds. Back when I was new to the whole Tourette’s, I didn’t know how to explain it so I would make excuses like I’m itching or I’m just stretching. It is also hard for me since people would have the tendency to stare at me while my Tics were acting up or sometimes even make fun of me and mock me. Those things would greatly affect my self – esteem because it made me feel unaccepted and it makes me think that there’s something wrong with me. It would again be hard for me because I have a difficult time in doing some things like the ROTC in school, driving and just plain keeping still. With those being the case, it’s hard for a person with Tourette’s like me to have a high self – esteem.

But even if those happen to me, it doesn’t stop me from doing things I love. Knowing that I can’t control what people thought of me, the best thing I did was to control what I thought of myself. I always tell myself that I am normal like every body else but unique in my own way. I keep on thinking that my Tics are an advantage rather than a disorder. It is an advantage because it acts like my trainer in building my self - confidence. I get help from my family and friends who always support me in everything I do. They are the ones who remind me to relax when my Tics are acting up and tell me that I can do anything despite my condition. I also get help from watching inspirational videos about Tourette’s and reading books about keeping a high self – esteem. I certainly love the quote of movie that said, “I have Tourette’s but Tourette’s doesn’t have me.” I always keep that quote in mind whenever I feel down about my Tics because it lifts up my spirit to continue to strive harder and attain my goals in life. And whenever someone tries to make fun of my Tics, I would just laugh along with them because I’m not insecure about it anymore and I’ve accepted it. I would sort of find it funny too. Whenever someone asks me about my Tourette’s, I wouldn’t make excuses about it but instead, openly talk about it and explain it to them.

I would like to achieve my goals about Tourette’s someday. First of all, I’d like to be a spokesperson about Tourette’s and inspire a lot of people who have it to do what they love and not be stopped by their Tics. I would also like to help people become more aware of Tourette’s Syndrome and the impact on the lives of people who have it. I would like to help children and teenagers cope with their Tics and to have a high self – esteem so they won’t be ashamed of their Tourette’s. Lastly, I would like to inspire and show people that having a disability is not a weakness or disadvantage and it is not a roadblock in living a happy life and fulfilling your dreams.

Having all these said and done, I could say that having Tourette’s Syndrome and how I chose to deal with it is a very significant experience for me that helped define myself as a person. It helped define me for it has contributed in my high self – esteem. When I chose to deal with it in a positive manner, it helped me make a lot of friends and meet new people. It has given me the confidence to join a lot of activities in my village and in school. It taught me how to face my other problems. It taught me that there is good in even the most difficult of times. It showed me not to be ashamed of who I really am and to just be myself. As what Brian Tracy, a self help author, once said, “ You cannot control what happens to you, but you can control your attitude toward what happens to you, and in that, you will be mastering change rather than allowing it to master you.”

1/20/2011

Real Stories: Thoughts of a Mother with Son who has Tourette Syndrome

By: Mardi Conde Puno (a language instructor and a mother of a son with Tourette Syndrome)
tourette syndrome is a neurological disorder manifested by at least two motor tics and one vocal tic. motor tics can be as simple as the blinking of the eye, to facial twitches, head jerkings, movements of the arms and even the legs or the abdomen. vocal tics can also be grunting, to the worst cursing and swearing of words..all these tics are involuntary and can't be controlled though there are times that they can be suppressed.

my son, john j has tourette syndrome. he was ten years old when i noticed that his eye keeps on blinking and later on his mouth moves as in facial twitches...i was frightened and alarmed. he was constantly scolded coz we always tell him to try to control the movements. i didn't know anything about tourette syndrome. i brought him to our family doctor and later to two eye doctors but no findings came. i walked in to a clinic of a neurologist but still nothing was diagnosed. the tics come and go and timely that they don't appear when we are in a clinic.

after a year, i was able to watch "front of the class", a movie about a teacher who has t.s. i gathered the whole family and we watched the movie in silence and with tears in our eyes. it was then that i realized that my son has tourette syndrome. i researched almost daily and i also let him read my researches. there is no real cause yet of t.s. and no cure although there are a lot of researches being done . medications are given to some but not to cure but to minimize the tics...i decided not to give him any coz the tics are mild and many are complaining with the side effects of the medicines. they are much worried about the side effects. and so i told my son that we won't be taking meds. since they don't cure but instead we offer this disorder to the Lord and pray. in His infinite love and mercy, i pray to the Lord that his t.s. will be cured one day in His time. according to research 75% of children with t.s.. lose the tics as they rreach early adulthood. they do become rampant and very noticeable on puberty age coz this is the age the child is very much stressed. i expect the worst to come coz he is now 13 but i trust in Him to help us cope with this. i pray for strength and acceptance daily.

at present, john j is having a lot of facial movements like eye blinkings, facial twitches, noddings, head jerkings , hand movements...the tics come and go, wax and wane. sometimes they are very visible but sometimes hardly noticeable. as he is now in to high school, into a new school i talked with his adviser about his t.s. everyone in school knows about his t.s. and so they are aware of it and so almost no one teases him or ridicules him. his vocal tics include grunting and sometimes he repeats words although his vocal tics aren't as strong as his motor tics.

many thanks to the Lord for my answered prayers like i no longer cry when i talk about his t.s., less bullies in school, his being happy in his new school. more strength for all of us esp. his pa. actually the least worrier in the family is john j. he has a great attitude towards his t.s. he only gets affected when people stare at him. this is his cry to all...please don't stare at me.

when we were interviewed by GMA , he was very willing and didn't hesitate. i explained to him that the interview is for public awareness and public education. i am so proud of my son and i love him so very much. with or without t.s., i thank the Lord He gave me john j.

By: Mardi Amadora Conde Puno (a language instructor and a mother of a son with TS)

Real Stories: A Life with Tourettes

Yes, I have Tourette's too.

After putting up the org (PTSA) and appearing on numerous TV shows that featured TS, most people might say that I have successfully conquered TS.

Guess what... I still haven't.

Sometimes I still get hurt when I get stared at. At times, I still feel insecure; my past still haunts me. And my tics have even started to get in the way with my keyboard playing.

I may not have conquered it, alright. Perhaps, I never will. But what's important is that I've conquered two things that are ever harder to conquer- the fear of living life, and the fear of loving others completely.

Life can be as hurtful as much as it is beautiful. Insecurities ought not to put us down, but to merely put our feet on the ground. TS has taught me and my loved ones how to be more understanding and patient. I will therefore live my life and continue coping AT ALL COST.

Guess what? I don't even think it's wrong to think that I have not conquered TS, and that TS has conquered me instead. It's not that I have given up or given in to it. It's just that something.... Someone greater has conquered me entirely, anyway...

...Lord, I surrender everything to you. Just keep on holding my hand, please... kahit malikot s'ya :)

And babe... thank you for loving me as I am.
By: Marlon Barnuevo (PTSA's co- founder, industrial designer, musician, diagnosed with Tourette Syndrome)

Real Stories: January 2011 Note

Hello! I have Tourette and I am proud of it. It was a blessing for me and not a hinder to my success. I inherit it from my dad side, a third generation. There were times I feel down because of my Tourette Syndrome, some people don't understand what really Tourette is. I cry.. I got hurt... I tell to my parents how I feel having Tourette in my life.... But this is how Tourette works in my life. Having tics in a split seconds, some staring at me, some don't understand, some looking at you from head to toe. BUT to tell you honestly, they make me better and stronger person. :) They make me to stand by my own and shout to the world I have Tourette all we need is understanding. If you can't understand us, may God light ups your mind. We are unique and perfectly molded by our savior. Proud! -Aileen Pacia (a student, a model, a Filipino with Tourette Syndrome)



Real Stories: "Buhay Tourettes"


"Buhay Tourettes"
Sa Panulat ni Alec Loteria (a 20 yr old guy diagnosed with TS)
Tinitingnan ka at minsan pinagtatawanan ka pa, sa bawat galaw ng aking katawan na lagi nilang nakikita
walang biro na araw araw ko yan nararanasan
at binabale-wala ko lang ang mga ito sa aking isipan
kaya ako nahilig makinig ng musikang mararahan
dahil ito'y nagpapasaya sa akin at higit sa lahat hindi nila ako pinagtatawanan.

Nakakapagod at masakit sa katawan
pero siguro may dahilan kaya niya ibinigay sa amin ang ganitong karamdaman
madaming tao ang hindi nakakaalam sa karamdamang ito
at bihirang tao lang ang meron nito
pero ang mga taong iyon ang nagbigay sa akin ng pagasa
para maipagpatuoly ko ang aking mga pangarap na kailangan kong matamasa...




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