SINGAPORE — Procrastination has no place in Mr Ooi Lin Kah’s life.

Diagnosed with a disease that is tightening its grip on him and will eventually rob him of his life, the 64-year-old has been striving in the time of the Covid-19 pandemic to do as much as he can to raise awareness of the illness and to reach out to people suffering in the same way.

In the latest efforts to make the most of his days, he has written and compiled — using only his eye movements to control a gaze-enabled device — a 100-page book titled Dignity, Care and Hope that he then self-published.

Mr Ooi suffers from amyotrophic lateral sclerosis (ALS), also called Lou Gehrig’s disease. It is a degenerative neurological disease that killed British scientist Stephen Hawking and American baseball player Gehrig of the New York Yankees.

As neurons in the brain responsible for controlling voluntary muscle movement rapidly deteriorate, alert and active minds are trapped in a body that can no longer control basic functions. There is no cure and for those afflicted, no hope of recovery.

Family and friends watch on helplessly as their loved ones eventually become completely immobilised in the late stages and they can no longer swallow, eat, speak or even breathe.

Mr Ooi, a former engineer who used to be an avid runner, has been confronting his mortality every day since his diagnosis in 2013 when he was 55 years old.

When he told his doctor about the loss of meaning in his life, the doctor encouraged him to use his remaining days to leave a legacy — by setting up an organisation that will help patients with motor neuron diseases overcome loneliness and despair.

The doctor is Dr Chan Yeow from Tan Tock Seng Hospital (TTSH), who oversees Mr Ooi’s respiratory care.

After Mr Ooi raised awareness of the disease through an interview with TODAY in 2020, more people with motor neuron disease and their families reached out to him through doctors.

Many of them connected through word of mouth. Some met one another through chance meetings at the clinic.

Before the interview, Mr Ooi and some patients had a support group at the National Neuroscience Institute, but the group meetings stopped after the Covid-19 pandemic started, he said.

As the new support group gained traction, some of the patients with motor neuron disease, their caregivers and volunteers started a registered society last year called the Motor Neurone Disease Association Singapore, or MNDa in short.

In doing so, they connected with more patients and their families living in Singapore.

This was done with support from several medical professionals, including Dr Chan, who is director of the home ventilation and respiratory support service at TTSH.

Dr Chan is also a senior consultant with the hospital’s department of anaesthesiology, intensive care and pain medicine.

He now sits as one of the doctors on MNDa’s advisory panel and helps them to devise strategies for advocacy.

Dr Chan said that ALS patients face many hurdles, from coming to terms with the painful diagnosis to coping with ongoing losses in bodily function.

Since the launch of MNDa last year, the group has brought together more than 50 patients in Singapore living with the disease and just as many of their loved ones — all of whom experience varying degrees of isolation and loneliness, with some spiralling into deep depression.

Mr Ooi said: “It is our shared dream that MNDa can be a dedicated support network for the motor neuron disease community in Singapore.”

He found that being involved in setting up the association also gave him a sense of purpose and fulfilment in life.

Having no voluntary muscle control from the neck down, Mr Ooi relies mainly on his trusty gaze-enabled device to communicate his thoughts.

It was introduced to him by Ms Tan Xuet Ying, a senior speech therapist at TTSH, and allows him to type on a computer using eye-tracking technology.

He completed interviews with TODAY via emails and WhatsApp messages, responding to queries promptly.

Source:
courtesy of TODAY

by TODAY

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