Former engineer and running enthusiast Ooi Lin Kah is stricken with amyotrophic lateral sclerosis (ALS)
He used to jog 5km daily in the morning and 10km on weekends, and had run in 13 marathons
Now he is completely dependent on his family, domestic worker and machines to sustain his life
Some studies suggest that people with athletic propensity or have served in the military have a higher risk of the disease
However, the causal relationships of these factors with ALS remain to be established, a doctor said
SINGAPORE — In the last seven years, amyotrophic lateral sclerosis (ALS) has taken so much away from Mr Ooi Lin Kah.
That includes his love for running and hiking, of getting outdoors and doing simple activities such as having his favourite hawker foods and clearing a scratchy throat.
Diagnosed with the same crippling neurodegenerative disorder that killed British scientist Stephen Hawking, the 62-year-old former engineer is now trapped inside a rapidly deteriorating body that once conquered 13 marathons even as his mind remains sharp.
The neurodegenerative disease of the motor neurons leads to progressive weakness of the muscles that control movements of the body including swallowing, speech and breathing.
Since his diagnosis in 2013, Mr Ooi no longer has voluntary muscle function and control from the neck down. He is now completely dependent on his family, domestic worker and machines to sustain his life.
A ventilator pumps air round the clock into his lungs, a cough-assist machine helps sucks out phlegm and saliva from the mouth, windpipe and lungs, and a feeding tube delivers specialised milk feeds and water directly into his stomach.
Yet, Mr Ooi, who once harboured thoughts of suicide, has found the courage to live a meaningful life.
Using an eye-gaze device that allows him to type on a computer, Mr Ooi talked to TODAY via an email interview.
Through his experience, he hopes to raise awareness of the illness and encourage people battling motor neuron diseases to find peace while living out their remaining years.
THE DIAGNOSIS
There is no cure for ALS, which affects an estimated 300 people in Singapore. This staggering fact, and that most patients survive only an average of up to five years, had hit Mr Ooi hard when he first learnt of his illness.
“My greatest fears then were death and suffering. I was most fearful of the discomfort to my weakening body, the emotional and financial stress to my family. I did not want to burden my family,” he said.
A former avid runner, Mr Ooi first noticed subtle early signs of limb weakness in his early 50s, especially while jogging or hiking.
He was diagnosed only two to three years later when weakness in his left arm became more pronounced.
At first, he thought the subtle signs were due to him being tired though they were more obvious when he was hiking. His legs would tremble slightly as he made his way down.
Another sign was how his arm froze while he was brushing his teeth. He might also miss a step while walking and talking.
As the illness progressed, he could not grip things tightly or lift things.
At the time, he was leading an active lifestyle, enjoying daily jogs, travelling and working on engineering projects.
Besides jogging 5km every day in the morning before work and 10km on weekends, Mr Ooi also completed 13 marathons and had gone on various hiking trips overseas.
His three children, now aged 27, 28 and 31, were still studying then.
Read more at https://www.todayonline.com/singapo...thusiast-coping-terminal-degenerative-disease
