Living with ALS: How a former marathon enthusiast is coping with a terminal, degenerative disease
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.
- 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.
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.
DEPRESSION AND SUICIDAL THOUGHTS
Depressed and suicidal after his doctors broke the bad news, Mr Ooi sought psychiatric help and took medications for more than half a year.
“Like how any normal person would react, I was in denial and hoped that it was a misdiagnosis. When the impact finally sank in after a few months, I fell into a deep depression,” he said.
When Mr Ooi became wheelchair-bound 40 months after the diagnosis, he turned to meditation “out of despair”.
Lying on the bed and being helpless frustrated him, but persisting with daily meditation gradually calmed his mind and helped with his depression.
He still feels lousy from time to time but professional help, support from family and friends, and learning to accept his illness have helped dull the emotional pain.
The father of three now lives with all of his adult children and their spouses in a terrace house. He recently welcomed his first grandchild.
“My wife and children give me plenty of moral support and assurance. In particular, my wife has been beside me, tolerating my temper and frustrations,” he said.
Mr Ooi also credited assistive technology for improving his quality of life. Three years ago, he started using an eye gaze-enabled device after a speech therapist from Tan Tock Seng Hospital (TTSH) introduced it to him.
He has regular check-ups at TTSH and the National Neuroscience Institute (Tan Tock Seng Hospital Campus) to manage the effects of ALS.
The device uses an eye-tracking sensor that can determine the position where Mr Ooi is looking, and this allows him to click and type on a computer interface using eye movements.
Recalling his frustrations over having to depend on others to type messages and access social media for him after losing the use of his fingers, Mr Ooi said that the technology allows him to communicate and socialise with his family and friends, and share his thoughts and experiences.
“There aren’t many things that I can do if there is no eye-gaze technology. I would be cut off from my family, relatives and friends,” he said.
WHAT HE MISSES
One of the things he could not do when the disease progressed was to swallow food.
After weakened throat muscles caused by ALS led to several traumatic choking incidents, Mr Ooi underwent a procedure known as percutaneous endoscopic gastrostomy in September at TTSH to place a feeding tube directly into his stomach. He has adapted well to the tube-feeding.
Penang char kway teow, rojak, roti prata and curry fish head are some of the hawker foods that Mr Ooi misses. “I also miss durians,” he said.
Once someone who loves being outdoors, Mr Ooi no longer goes out much these days.
“It is difficult for my caregivers to transfer me to the car, and I don’t like the curious stares at my ventilator face mask. I really miss outdoors but I have to consider the difficulties and the stares,” he said.
Mr Ooi can still speak but his voice has become softer with some slurring. This sometimes leads to miscommunication. “I miss my voice,” he said.
He does not look forward to the day when he will completely lose his voice, but that, too, is something he has come to accept with a calmness.
“With technology, my fears are much alleviated as it helps me to talk about what is on my mind via my eyes. (But) I should have done voice banking when my voice was still intact so that the communicator can verbalise my voice upon 'eye-typing' instead of using some funny robot voice,” he said.
The eye gaze-enabled device can be hooked up to a communicator software, which can read aloud typed text.
KEEPING HIMSELF OCCUPIED
In coming to terms with an incurable illness, Mr Ooi has discovered the simple joys of life and there are still many things he wants to complete such as a writing project.
He is happy when his little personal projects are completed or reach a certain milestone.
He recently wrote about his experience using the eye tracker in an inaugural newsletter of the International Society of Augmentative and Alternative Communication Singapore. The non-profit organisation promotes best possible communication for people with complex communication needs.
Mr Ooi has also started writing the chapters of a memoir. The newly minted grandfather hopes to leave behind some memories for his newborn grandchild and future grandchildren.
“They may be interested to know who their grandfather is, and what wise words he may leave behind,” he said.
“With writing, I am able to convey my feelings and thoughts. Secondly, it helps me to focus on productive work rather than letting my mind wander into depression abyss.”
Visits by relatives and friends, birthday and anniversary parties also make his day. He also celebrates the little pleasures in life.
“For us ALS patients, simple things will bring us much joy such as good sleep, a bath, scratching an itch, a sip of beer, a 'hello', a smile, a visit from loved ones and friends. Really, a normal healthy person will not realise these simple joys,” he said.
Encouraging people living with motor neurone diseases to accept their illness, Mr Ooi said: “Our cognitive abilities are not affected and we can plan for how we want to live out our remaining years.”
Related topicsALS amyotrophic lateral sclerosis mental health assistive technology Lou Gehrig's disease motor neuron disease
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