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.
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. 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.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.
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. The 34-year-old lawyer is looking into putting in place processes and a framework for MNDa to attain charity status.
About two-thirds of ALS patients have weakness in one limb , gradually progressing to weakness of other limbs, speech, swallowing and breathing difficulties. Information provided by Dr Kalpana Prasad, senior consultant with the department of neurology at National Neuroscience Institute.As frightening as their illness is, Mr Ooi and MNDa’s members want others to know that there can be dignity and hope even in their struggles.
Before connecting with one another through MNDa, affected individuals and families were well-supported by their medical and healthcare teams but many still felt isolated and alone in their struggles against the disease. “We could only watch as our mother slowly faded away. She lost her ability to walk, hold the spoon, feed herself and, eventually, she could not even sit up on her own.”
MNDa has also worked with Before Beyond, a social initiative that encourages people to talk about death and grief, to come up with a booklet titled Beyond the Diagnosis – Motor Neurone Disease. It features a collection of real-life accounts of people living with motor neuron disease. “ started when some members suggested an outdoor gathering after the rules eased. We have not met one another physically although we have been chatting in the chat group,” Mr Ooi said.Since May this year, individuals with motor neuron disease and their families who got to know one another through MNDa have been meeting around once a month at East Coast Park.
“But I forced myself to reconsider my negative thinking because I wanted to show other ‘warriors’ that we can live with this illness with dignity and with little constraints if we were well-prepared.”“That feeling of meeting physically someone whom you only see online — you feel both warm and connected.”Mr Ooi Lin Kah and his younger daughter Sherry Nicole pictured with Health Minister Ong Ye Kung who visited Mr Ooi on Aug 21, 2022.
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