Beyond the ice bucket challenge

Beyond the ice bucket challenge

KUCHING - Up to a week ago, Chang Foh Soon (pic) was wondering why people dumped ice water on their heads to raise awareness about amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig's Disease.

"People go bald to raise awareness about cancer, and I get that. But why ice? I don't get it," the 65-year-old retired science teacher said.

"Three days ago, my sister-in-law e-mailed me links to Ice Bucket Challenge videos on YouTube. At first, I thought it was ridiculous to get wet and cold. So what?" asked Chang, who himself was stricken with the motor neurone disease two years ago.

"I was fishing one day and realised I could not reel in the line. I thought I was exhausted. It was half a year later when I finally went to see a doctor," he said at his home here last weekend.

"The doctor diagnosed me very quickly - within just an hour. I just got a shock," Chang said, cracking up with laughter. "Maybe that's why they use ice water-lah! It's to give you the effect of shock!"

Chang went on to obtain a few more opinions on his case, including Australia.

"You don't accept something like this, which has no cure, without getting more opinions," said Chang, who was surprised by how little information there was about ALS in Malaysia.

"Of course, ALS is a very unusual disease, but there isn't even a support group. The first group I came across was in Perth. It's been two years and I haven't even made contact with another patient in Malaysia."

It is unclear what is the exact number of ALS patients in Malaysia, though in developed countries, there is on average one ALS patient for every 500,000 persons, suggesting that there might be about 60 ALS patients in Malaysia today.

"When I went to KL, I asked them (doctors) about an association. They said there was no association, and I thought, not even in KL? That's quite unfortunate," he said, adding that the most well known ALS sufferer to date would be Prof Stephen Hawking, 72.

"So finally, I saw more of the ice bucket challenge videos, and I thought, it's good, there is a need to raise awareness."

Chang has not felt the onset of the most serious stage of the disease yet - when his speech will slur and eating becomes difficult. He lets on that his golf handicap has deteriorated from 20 to 30.

"I can't swing the way I did before, but I can still walk the 18 holes. No buggies. And I still go fishing," said Chang.

"I'm not able to write like I used to, but my signature is still OK. I can't use chopsticks any more. There aren't good or bad days, it's more like constant bad mornings. The first one or two hours are difficult.

"ALS is handicapping me. But once you know, then you know what to do. Right now, I want to do the ice bucket challenge!"

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