Advertisement

Life beyond Tourette syndrome

“TS (Tourette syndrome) is not a hindrance if you really want to achieve your dreams.”

Life beyond Tourette syndrome
Diagnosed with Tourette syndrome, Marlon Barnuevo proves there’s so much life beyond the neurological disorder. 
This is what Marlon Barnuevo, an individual diagnosed with the incurable neurological disorder, tells others who suffer from the same. He genuinely believes that there is more to life than his condition. 

At seven years old, he first experienced the symptoms which started with motor tics. These are sudden twitches, involuntary head jerking, or spasm-like contractions involving the eyes, mouth, face, neck, and shoulders.

A year after, he suffered from vocal tics. These can be as simple as repetitive humming or clearing of the throat. 

“What my parents knew then was the common misconception, which is still applicable today: these tics are nothing but mannerisms. They always reprimanded me to stop,” he shared. “Since they did not know what was wrong with their child, they panicked.”

The Barnuevos, much like most Filipino families at that time, had no knowledge of Tourette syndrome. “There was no Internet then. I tried to look it up in the Encyclopedia but I did not know what to look for! I did not even know the word ‘tics’ or much more, ‘Tourette syndrome’,” he related.

The young Barnuevo then became an easy target for bullies. He received a lot of stares in and outside of the school and he was depressed. 

Life beyond Tourette syndrome
It is when he is naturally concentrated doing the things he loves that he can control his tics. 
Finally, as a high school freshman, they consulted a neurologist. After a series of check-ups, a counselling neuropsychiatrist was able to explain to my parents my condition.

“And at age 19, my family fully accepted that I have TS.” Surprisingly, Barnuevo found himself overwhelmed with relief. “[I told myself] ‘I can now tell people what it is. I now have an answer. I have Tourette Syndrome’,” he beamed. 

Adding music to his life

Since he was young, Barnuevo has dreamt of being a musician. He started playing the piano in kindergarten and honed his musicality in high school. He formed his first band as the keyboardist soon after.

In college at De La Salle-College of Saint Benilde, he joined an independent organization composed of musicians and became good friends with fellow performers, including singer Nyoy Volante, Mark Escueta of Rivermaya, and the late Bryan Velasco of Razorback. 

Life beyond Tourette syndrome
Barnuevo serves as a songwriting coach for the PhilPop Community. 
He then became a full-time musician, and after his time on stage, he concentrated on music production via his home-based outfit named G-Strings Studio where he worked with various artists both for originals and revivals.

He did commission musical arrangements for Dingdong Avanzado and K Brosas, and composed songs for Christian Bautista and Regine Velasquez. He was musical director for Volante and his regular patron Davey Langit. 

In 2016, Barnuevo became a finalist in the PhilPop Music Festival for his song Araw, Ulap, Langit interpreted by Christian Bautista. He likewise bagged the 5th Best Song for Parang Tayo Pero Hindi, performed by Michael Pangilinan and Angeline Quinto in the 2016 Himig Handog P-Pop Love Song. 

Life beyond Tourette syndrome
Barnuevo wins 5th Best Song in the Himig Handog P-Pop Love Songs 2016.
 
Designing his life

With his background in interior design, he ventured as a freelance artist and as a designer. A profession that requires precision might be a trying path for someone who has TS but he proved it otherwise.

By 2011, Barnuevo found a new interest as an educator, which he is very passionate about. 

“I have done so much in my life, But so far, teaching is the most fulfilling,” he beamed. “I get so much joy seeing my students learn and I know that I contributed to it.” 

Life beyond Tourette syndrome
He helps his students design their lives as an educator in Benilde’s Industrial Design Program.
Sharing his knowledge, in a way, is him giving back to his alma mater, where he felt more accepted. 

“I experienced more stares and bullying when I was in high school. The people in college did not mind,” he stated. “Every now and then you encounter people who talk about you but that is unavoidable. I totally understand that it happens.”

Understanding the importance of life

Life beyond Tourette syndrome
Barnuevo shares his passion for music. 
“When I was much younger, I used to say that the biggest solution to overcome TS is to become an achiever. It tends to make people look past my disability,” he said. “However, now, I understand that proving myself to the world is not the only answer.”

Twenty years ago, Barnuevo started to raise awareness of TS through his own website. He realized then there was not enough awareness of TS in the country as some years back, St. Lukes Medical Center in Quezon City conducted a case study on TS and only found Barnuevo and a registered nurse named Rowena Balmores Victorino, who was currently researching on TS for her dissertation, to assist her two siblings who have the syndrome. 

Fueled by their common goals, Barnuevo and Victorino were encouraged to form Philippine Tourette Symptom Association (PTSA). 

Today, PTSA continues to be a growing family and grants the much-needed support system for people with TS or parents whose children share the condition. Barnuevo, currently the PTSA spokesperson, continues his mission by engaging in various seminars. 

“Everyone should know what TS is, there is no reason for this advocacy to fail,” he reiterated. 

Barnuevo stressed that persons who show signs of tics should get a proper diagnosis. “Do not lose hope; everything is possible even if you have TS,” he encouraged. 

If there is one thing that can stop his tics, it is when he is naturally concentrated doing things that he is most passionate about such as playing the keyboards or designing. “I stopped taking the meds before I finish college since it was really expensive and I was also afraid of the possible side effects.”  

For more information on PTSA and its advocacies, visit www.facebook.com/ptsamain. 

Topics: Tourette syndrome , Marlon Barnuevo , neurological disorder , Nyoy Volante , Mark Escueta

Related stories:

No related stories matched this topic.

COMMENT DISCLAIMER: Reader comments posted on this Web site are not in any way endorsed by Manila Standard. Comments are views by manilastandard.net readers who exercise their right to free expression and they do not necessarily represent or reflect the position or viewpoint of manilastandard.net. While reserving this publication’s right to delete comments that are deemed offensive, indecent or inconsistent with Manila Standard editorial standards, Manila Standard may not be held liable for any false information posted by readers in this comments section.
AdvertisementSpeaker GMA
Advertisement