If you are active on social media or watch the news regularly, you must have already seen a lot of videos of people — ordinary folks and celebrities alike — taking on the ice bucket challenge. Former President George W. Bush did it, Kapamilya stars Anne Curtis, Newscaster Korina Sanchez, and many others have allowed themselves to be doused with ice cold water to help raise awareness of ALS and raise money for the association that helps people who have unfortunately been inflicted by the disease.
I myself did not know anything about ALS and researched on what this disease is all about. Let me share with you what I found out from the website of the ALS Association:
What is ALS?
The ALS Association website defines ALS (Amyotrophic lateral sclerosis, often referred to as “Lou Gehrig’s Disease) as a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. Motor neurons reach from the brain to the spinal cord and from the spinal cord to the muscles throughout the body.
The progressive degeneration of the motor neurons in ALS eventually leads to their death. When the motor neurons die, the ability of the brain to initiate and control muscle movement is lost. With voluntary muscle action progressively affected, patients in the later stages of the disease may become totally paralyzed.
What are the symptoms of ALS?
The ALS Associations says as motor neurons degenerate, they can no longer send impulses to the muscle fibers that normally result in muscle movement.
The early symptoms of the disease often include increasing muscle weakness, especially involving the arms and legs, speech, swallowing or breathing. When muscles no longer receive the messages from the motor neurons that they require to function, the muscles begin to atrophy (become smaller). Limbs begin to look “thinner” as muscle tissue atrophies.
Is there a cure?
According to ALS Association, the recent years have brought a wealth of new scientific understanding regarding the physiology of this disease.
There may not be a cure or treatment today that stops or reverses ALS, but there is one FDA approved drug, riluzole, that modestly slows the progression of ALS as well as several other drugs in clinical trials that hold promise.
It is important to note that there are now significant devices and therapies that can manage the symptoms of ALS that help people maintain as much independence as possible and prolong survival. It is important to remember that ALS is a quite variable disease; no two people will have the same journey or experiences.
What does the ALS Association do?
The website of the association states that it was established in 1985, and is the only national non-profit organization fighting Lou Gehrig’s Disease on every front. By leading the way in global research, providing assistance for people with ALS through a nationwide network of chapters, coordinating multidisciplinary care through certified clinical care centers, and fostering governmental partnerships, the Association builds hope and enhances quality of life while aggressively searching for new treatments and a cure.
As the preeminent ALS organization, the Association leads the way in research, care services, public education, and public policy — giving help and hope to those facing the disease. The Association’s nationwide network of chapters provides comprehensive patient services and support to the ALS community.
The mission of The ALS Association is to lead the fight to treat and cure ALS through global research and nationwide advocacy, while also empowering people with Lou Gehrig’s Disease and their families to live fuller lives by providing them with compassionate care and support.
This is what the ICE BUCKET CHALLENGE hopes to achieve: raising money that will support the goal of the ALS Association through public donations.
A Filipino with ALS
Many people hardly pay attention to causes like this unless its hits closer to home. ALS has not spared our own people as well.
Balitang America correspondent Rommel Conclara, along with Associate Producer Troy Espera went to Reno, Nevada last weekend, to get to know 68-year-old Filipino Rogelio Kang, who was diagnosed in 2011 with amyotrophic lateral sclerosis (ALS). Rogelio is one of the many inflicted with this debilitating disease.
As Rommel Conclara reported, the Kang family was devastated when the ALS diagnosis was confirmed. This was Rogelio Kang and his family’s story of strength, faith and hope, as reported on Balitang America:
“To know that your partner is sick with that, it’s not easy for me to take. Not until the neurologist from Stanford really confirmed that it was ALS. I didn’t even wait for the neurologist to say it,” said Kang’s wife Nenette. “I left the room.”
Rogelio Kang immigrated from Dumaguete in the mid-1980s. He worked in casinos in Reno for 22 years as a key man. He also visited the Philippines every year during Christmas.
ALS destroys nerves that control muscle function. For Rogelio, who was known as a very active person, ALS progressively robbed him of the use of his legs, arms, and his ability to speak.
“I’ve seen him do just a little bit of a decline with the fact that he was able to stand with the help of one person about a month ago and now it takes two people to make him stand up,” said PJ Juhrend, Kang’s physical therapist.
At this stage, Rogelio needs care around the clock, an effort shared by the whole family.
“My life is God’s gift to me and I have no right to give it up, but I would rather say I am sharing my life with him,” said Nenette. “My hands are his hands now. My legs are his legs.”
His youngest daughter Reeza moved her father and his wife into her home to provide extra support.
“I think before he got diagnosed and started getting sick and starting to progress, I told him that I would take care of him. So that’s my push and it’s hard as a caregiver,” said Reeza.
Over the past few weeks, awareness and donations to ALS organizations have skyrocketed thanks to the ice bucket challenge that has gone viral on social media, where people dare each other to dump ice water on themselves or to donate to ALS organizations.
There is no cure or treatments for ALS and Reeza knows that any donations made today won’t help her father. But she sees hope for others down the road because the funds are raised for more research.
“Hopefully it will, with all of this awareness—eventually after a few years, even ten years from now, they will be able to come up with some type of medicine that, I’m not asking for a cure, but to keep the sickness at bay,” said Reeza.
Despite the day to day challenges the Kang family deals with, this small gesture of support put a big smile on their faces.
“I was so touched by that plan, by that event they are planning for my husband. I was just so touched,” said Nenette.
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Gel Santos Relos is the anchor of TFC’s “Balitang America.” Views and opinions expressed by the author in this column are are solely those of the author and not of Asian Journal and ABS-CBN-TFC. For comments, go to www.TheFil-AmPerspective.com, https://www.facebook.com/Gel.Santos.Relos
