Participants dousing themselves with freezing icy cold water to be able to empathise with some of the numbness ALS patients feel. — Courtesy photos
INSPIRED by a viral Internet trend, Persatuan Penyakit Motor Neuron Malaysia (MND Malaysia) and ATV News held a public awareness event with a catchy title.
The “Ok i love U” Ice Bucket Challenge took place at Padang Timur, Petaling Jaya to raise awareness on motor neurone disease (MND), also referred to as ALS (Amyotrophic Lateral Sclerosis).
Petaling Jaya MP Lee Chean Chung spoke to the audience on what ALS could entail.
“ALS is an illness that compromises the nervous system.
“It gradually affects the mobility of its patients.
“It can eventually affect your breathing and nutrition intake as well,” he said.
Lee added that he would be donating RM5,000 to MND Malaysia.
Koo’s insights has helped visitors and other ALS warriors understand the disease better.
For ALS warrior Albert Koo, 54, the event reminded him of his journey from diagnosis to social isolation and, finally, to regaining personal strength through educating others on the disease.
Diagnosed at age 48, Koo initially became a recluse as the disease took over his life.
“At first, I experienced foot drop, but there was no pain. Only soreness from sitting and lying down for too long.
“Then, it progressed from my left foot to my left leg, before affecting my right leg as well,” recalled Koo.
Faced with an average life expectancy of two to five years from the onset of symptoms, Koo went through denial and depression.
“From 2018 to 2019, I couldn’t concentrate on work and even left several WhatsApp chat groups.
“I was marking down 1,800 days on my calendar, counting down the days I had left to live,” he added.
However, at the ice bucket challenge, he redefined what it means to have ALS.
(From left) Asia Television executive director Leong Wei Ping, Lee and Ng celebrating MND Malaysia’s 10th anniversary in conjunction with the challenge.
Koo spoke about accepting the diagnosis, cherishing loved ones and spreading the word on ALS so it would lose its reputation of being an unknown disease.
The ice bucket challenge was organised to create public awareness by replicating a feeling of immobility among visitors who do not have the disease.
“When you pour the bucket of ice over your body, your arms will freeze up.
“It sheds light on how ALS patients may feel,” said MND Malaysia chairman Benny Ng.
MND Malaysia provides home visits where newly-diagnosed patients and their families are educated on the disease.
They will also be advised on various support services such as those that provide live-in caregivers.
Alpro Pharmacy Malaysia and Universal Nursing Care were among vendors present.
Participant Lemuel Lim, 29, said he had heard of ALS but barely had an insight into the condition before.
He said he learned more about the disease and how it affects patients, thanks to social media publicity on the event.
To donate, either visit https://mndmalaysia.org/en_gb/how-to-help/ or donate reward points via PETRONAS Mesra Reward Points Program on the Setel application (a minimum of 500 points is required to donate).
