NCD Chronicles #11: Finding Hope in Motor Neuron Disease

In this episode of NCD Chronicles, BFM Producer, Tee Shiao Eek, speaks to Albert Koo and Dr Loh Ee Chin, SJMC Consultant Palliative Care Physician who share their experiences of finding hope amidst a terminal diagnosis. 

This episode is a part of BFM's monthly Health & Living discussions, which offer diverse perspectives on living well and approaching the end of life. These conversations lead up to World Hospice & Palliative Care Day on October 14th.

"Motor neuron disease (MND) is a disease that affects the motor neurons that are responsible to make your muscles move. At the start of the disease, some patients find weakness in their hands and legs while others experience difficulty swallowing and slurred speech," Dr Loh explained. 

In Albert's case, he was initially informed that he had focal MND which affected one limb. However, it was not to be as it progressed to his right leg. Today, he can no longer walk and is paralysed from the waist down. He has also started to feel weakness in his arms. 

"I am not longer as strong as I was in the past. My arms will cramp in awkward positions and it's starting to limit my mobility," he shared. 

When faced with a shocking diagnosis, patients often go through 5 stages of emotions – denial, anger, bargaining, depression and acceptance but Dr Loh brought up the sixth emotion – hope. 

"Nearly all MND patients know they have hope; hope to live longer and better. They hope to enjoy life with more meaning, and they tend to appreciate life more," she said. 

But some people may say, why give them false hope? "We do not want people to have false hope but we want them to have realistic hope. We encourage them to live life in the present moment as much as possible," Dr Loh expressed. 

She added that what patients may find on Google is not all correct. No one knows their time but what we do know is what we need for ourselves to live better and longer, and many patients have proved her wrong and lived beyond the book. 

Source: BFM