ALS: The silent, slow killer

MANILA, Philippines – For 36-year-old Rhenn Las, a Filipino working in Qatar, the ALS ice bucket challenge is no laughing matter. His father, Renato, died at the age of 56 from ALS in 2001 or just over a year after being diagnosed with the disorder. 

“I can remember symptoms started in 1997,” Rhenn told Rappler in an email interview. “Prior to that, no one could even tell what was happening to him. We went to almost all the neurologists in the country but no one could help him.” 

Rhenn’s family even sought the opinion of faith healers and an albularyo – a traditional medicine man – but they could not tell them what was wrong with Renato. (READ: Fast facts: ALS and the ice bucket challenge)

“Most suspected that it was due to an accident that my father had. Other said he was ‘nakulam’ – hexed – because he traveled to many places. We didn’t even know what ALS was.”

Slow withering

ALS is amyotrophic lateral sclerosis disease – a rare neurodegenerative disease that results in rapidly progressive weakness and the loss of the ability to control muscles throughout the body. It affects only one to two people out of 100,000 in the United States but its exact cause is yet unknown.

Like most people who suffer from ALS, symptoms at first were mild. “It started from the left hand and spread to the arm,” Rhenn recalled, “After that it progressed to the right hand and then the right arm.” From his arms, it spread to other parts of his body, disabling movement and even speech. He lost his appetite and his body began to wither slowly. Renato’s mind was still sharp, however. He communicated to his family by pointing to words and shapes on a board.

Life expectancy for persons with ALS is short. Renato was diagnosed with ALS in 1999. “The doctor gave us only a year for him,” said Rhenn. Yet Renato outlived the grim prognosis until he died in March 2001.

‘A different story’ 

Caring for Renato proved to be difficult for Rhenn and his family.

Renato had to quit his job as an engineer of Jaka Realty. Rhenn’s younger brother stopped schooling while his mother was forced to work but that was still not enough to pay for medical bills. Rhenn continued his studies and worked as an engineer for a major broadcasting company.

“I thought at the time that, if I were rich, the story of my father’s bout with ALS would be different,” said Rhenn who wished he could have found a cure or treatment abroad. Nevertheless, his family was still grateful for the help of friends and relatives.

Not too late

A support group could have helped Rhenn’s family gather better information and assistance. But at the time, there was little public awareness of ALS disease let alone a support group of survivors.

“No one knew a case like (my father’s). The only medical help we were getting was from Makati Med where my cousin worked as a cardiologist,” recalled Rhenn. It was only years after his father died when he watched a made-for-television story of a person with ALS. 

Rhenn questioned the ALS ice bucket challenge and its goal of raising awareness for ALS through social media. “Bakit ngayon lang?” (Why are we doing this only now?) 

Rhenn won’t personally do the ice bucket task if challenged but he acknowledged that “it’s important to (raise awareness for ALS) so everyone will know from the first stage that they have ALS rather than knowing when it’s too late.” (READ: Why I refuse to join the ice bucket challenge)

He hopes sharing his father’s story may help raise awareness of ALS and, at the same time, honor the memory of Renato who “was a loving father who would do anything for his family.” – Rappler.com 

 

Do you have a story to tell about someone living with ALS? Share it with us at move.ph@rappler.com.

Tell us what you think about ALS and what can be done to help others with the disease.