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...

2010- A Xmas Party Offered for the Children of Nazareth Homes

The Philippine Tourette Syndrome Association decided to hold their christmas party in Bulacan. Because of all the blessings they've had for 2010, they decided to pay their blessings forward by giving gifts to the Children of Nazareth Homes. PTSA headed by TS Support Group in Bulacan in collaboration with Project ABC (Abandoned Children) made a day full of joy, gift giving, dancing, and a blessed feast for all these children. Not to mention that a 19 yr- old TS diagnosed individual, Aileen Pacia, shared a moment of speech for these children as she shared her challenges having TS. She even shared the value of being strong despite hardships in life which the children of Nazareth were truly inspired.

This event is primarily rooted from the realization that eventhough it's hard for you to experience a life with Tourette Syndrome, there are also many out there who may have more difficult lives than yours. So the least thing we can do is to be thankful of what we have and cultivate them to make you a better person each day---- then in end, the world would be a better place.

PTSA would like to thank Mr. Butch Duay, our Tourette Syndrome support group coordinator in Bulacan, the TS support group in Bulacan, the President of Project ABC, and of course the head of the Children of Nazareth Homes for the warm welcome.

And to the abandoned children of Nazareth Homes----- "we will not be able to relieve your pain but by understanding it and sharing it, we might make it possible for you to bear it".

Paying It Forward

It’s the last month of year 2010 and the Philippine Tourette Syndrome Association thought of paying all our blessings forward to other people who are most in need. Our members who are diagnosed with Tourette Syndrome have long been battling with the disorder and fortunately, all of them are successful in their own respective walks of life. The attitude of proper coping and courage to accept who they really are and what they are capable of are great tools that these people have used over the years to love themselves more despite the disorder. This encouraging experience fuelled our drive to share our blessings to people who are also in need--- that in the eyes of humanity we should not complain because there will always be people who are less fortunate than us. So the Philippine Tourette Syndrome Association collaborates with Project ABC to share our blessing to children of Nazareth Homes in Bulacan, Philippines. This will be a one day yuletide event that will serve not only a time of merriment but also to instill the idea of “true giving” this Christmas.

We will be giving the kids gift bags with practical things they need--- soap, toothbrush, toothpaste, toiletries, etc. We would like to ask your help in providing them these things. We will also welcome other kind donations for these kids—books and clothes are also welcome. FOR YOUR DONATIONS, please coordinate with our support group coordinator in Bulacan, Mr. Butch Duay (0917.8040726) if you’re in Bulacan area. However, for your general inquiry and donations if you’re in Manila, please contact the founder of the Philippine Tourette Syndrome Association, Ms. Rowena (0915.4424340).

We are hoping for your kindness in this fruitful event.