‘You can’t talk, you can’t bite or swallow and you shake’


IPOH: Imagine living your life as a completely normal person and then suddenly your health goes south.
That’s what happened to Perak Parkinson’s Association president and founder Samuel Ng.

Ng was 42 years old when he was first diagnosed with Parkinson’s disease 10 years ago.

“For the first three years, I was in the dark. It was the most terrible time of my life, and then in the third year a specialist correctly diagnosed me,” he told FMT at the association’s training centre here recently.

“It started with my left hand (from the wrist down) getting numb and it spread to the whole arm. I was scared and frustrated when I couldn’t move my arm.”

He said the disease also affected his work in marketing and sales for a pharmaceutical company, for which he had toiled for 16 years.

“At the age of 42, I was at the peak of my career.

“When I found out about my condition, I was devastated. But, at the same time, I was glad I knew what my disease was.”

He said he didn’t want to be a burden to the company that had been so supportive of him throughout his career.

The diagnosis motivated Ng to leave his job for a higher purpose — dedicating his life to helping others suffering from the same symptoms.

“I told myself I wanted to do something to change my condition, to manage my disease. That’s why I started to help people and at the same time, myself.”

He said his time working for the pharmaceutical company was a great help.

“I knew a lot about medications and treatments because of my trade.”

Ng tried to describe what it felt to have Parkinson’s.

“It is a horrible disease. You can’t move; when you want to do something, you can’t.

“You feel so stiff, and it feels as though everything is pulling away in your body, the muscles, the face. You can’t do what you want and then the shaking starts.”

Khor Kong Kee, who is the association’s treasurer and co-founder, also suffers from Parkinson’s.

Describing how it felt, Khor said: “You can’t use your arms or talk. You can’t even smell.

“You can’t bite food and you end up biting everywhere, including your tongue, lips and the inside of your cheeks.

“Your throat can’t even swallow food. If the food is too fine you choke, if it is too big, then it won’t go through.”

Khor was diagnosed with Parkinson’s in 2009, when he was 60 years old.

When asked whether it was difficult for those who suffered Parkinson’s to hold on to their jobs, Khor acknowledged that it was, especially when it came to jobs in the private sector.

“Often, people can’t tolerate your behaviour because people who suffer from Parkinson’s are usually very moody.

“They also have problems socialising and maintaining good PR (public relations). In the private sector, these are all qualities that they need.”

He said overseas, where there was greater awareness of the disease, the situation was a little different.

“They give Parkinson’s sufferers modified tasks, which is the same like they would do for the handicapped in a company.

“Society needs to recognise Parkinson’s and then make adjustments for the people who suffer from it.”

The Perak Parkinson’s Association was registered in 2012 and has since taken on more than 100 patients, who receive training at its centre.

One of the association’s main goals is to increase awareness in the country about Parkinson’s disease.