After being diagnosed with Parkinson’s disease, Samuel Ng started a mission to promote support for people with the disorder. He speaks to Priya Kulasagaran about why he believes awareness is crucial
“Don’t worry, I just have to wait for the medication to start working,” says Samuel Ng, smacking his arm to get the blood-circulation going, as he slowly walks across the room. A few minutes later, he appears to be frozen in place, stiff as a statue. “This is the problem sometimes with the condition I have, but I’ve learnt some tricks for it,” he says in a calm voice. “See the lines in the tiles? I just have to focus on them, and move my legs on those lines, and …” He beams with a smile as he walks again. “Seems like a simple trick, no? It took me a while to learn it though.”
These ‘tricks’ as Ng calls them, have been instrumental in helping him manage his illness — Parkinson’s disease. While he is the picture of positivity these days, it took him three long years to get to the root of his condition.
It had started with a numbness in his left hand, which gradually spread to his entire arm. “It was like I could not use my entire arm because I couldn’t control it,” says Ng. “I couldn’t drive, I couldn’t even put on a shirt without help. And none of the doctors I went to could tell what was wrong with me. At the time, I was at the peak of my career (as a medical sales representative), and it really troubled me — I needed to get well and support my family.”
Finally, at the age of 42, he had his diagnosis. “At first, I was upset that I had this. But in a way I was glad, because at last I knew what the problem was, so I could take the right steps to help myself. I started treatment soon after,” explains Ng, who is now 52 years old.
Following his diagnosis, Ng also felt a need to address a higher calling — to help more people who were suffering like he was. “It was strange, I just felt like I had to do this. I just couldn’t walk away from it, and I just had to work on things that could hopefully help people,” he says.
Ng’s efforts started small; a simple forum in his hometown of Ipoh to raise awareness on the disease, featuring Prof Dr Lim Shen-Yang, a consultant neurologist at the Universiti Malaya Medical Centre. However, even with this seemingly simple effort, Ng was made to feel like the odds were stacked against his favour.
“A lot of people were sceptical of the idea,” he says. “They said I was wasting my time, because nobody would be interested in a medical forum because it would be boring and barely anyone would show up. But I guess I’m just stubborn! Part of what drove me was speaking with a very experienced doctor who said he had attended all sorts of forums, but never one on Parkinson’s disease. So I just decided to do it.” Contrary to the naysayers, some 500 people showed up — all of whom were interested in learning even more.
The interest generated by the event inspired Ng to set up the Perak Parkinson’s Association, which formally registered itself in 2012. The association, which is open to Parkinson sufferers, caregivers, as well as advocates, regularly holds classes such as yoga and physical therapy throughout the week. Members, who only pay an annual fee of RM28, can attend these classes for free.
One of biggest misconceptions of Parkinson’s disease is that it is a condition that only affects older adults. The reality is that it can strike people in their twenties, or even children. A progressive neurological disorder that affects movement, Parkinson’s disease is characterised by tremors, stiffness or the slowing of movement. Although there is no known cure for the condition, medication can greatly help mitigate these symptoms to help sufferers live as normal a life as possible. According to the Malaysian Parkinson’s Disease Association, an estimated 15,000 to 20,000 are currently living with the condition.
Highlighting his own experience as an example, Ng believes that awareness of the disease in the country is sorely lacking even among medical professionals. “My main concern is the risk of misdiagnosis; there have been cases of people with the disorder being mistakenly diagnosed as having a stroke. Getting the wrong type of treatment can lead some severe complications,” he says.
This drive to raise awareness has been the spark for the Perak Parkinson’s International Symposium which will be held in October this year. Featuring 12 foreign and local experts, Ng hopes the event will attract professionals and caregivers interested in learning more about the disease.
He adds that for some patients, the shame of being seen as a ‘burden’ for having the disorder sadly causes them to isolate themselves from others. “They don’t even tell their own family or friends; they feel shy that they can’t control the shaking, and they feel like they shouldn’t ‘scare’ or ‘trouble’ others. But it can be managed; it’s hard, no doubt, but there is no shame in getting help if you need it, and there are ways to pull through it with enough support,” he says.
For Ng, what makes him move forward is the opportunity to help others who are fighting the same battle as he is. In his words, the disease did not just change his life on a pragmatic and physical level, but also his entire outlook of life. “Before I was diagnosed, I was all about chasing money, just working and working all the time because I felt that I needed only that to provide for my family,” says the father of two.
“But after that, I started to think more about other people, because I realised that helping others made me feel better as well. And I want to show others you can still do a lot of things even if you have the disease; people are shocked when they come for our classes, because even though we can’t walk properly when the tremors are bad, we can still cycle and dance very well! It’s all in having the right mindset.”