It has been well documented in the literature that Parkinson’s is associated with a certain type of personality. They tend to be introverted, morally rigid, punctual and “self-controlled”. In my own experience, I have also observed such “Parkinson’s personality”. Due to their submissive nature, Parkinson’s patients are the most pleasant and obedient patients whom I have treated in my career.

In addition, Parkinson’s patients also have a lower tendency of novelty-seeking behaviour (i.e. tendency to seek excitement in response to new experience). In other words, they are generally not very adventurous or outgoing. Most of the time, their daily activities are confined to their homes, and they keep a distance from the society.

It is difficult to determine the exact origin of the “Parkinson’s personality” - it could be the direct manifestation of the illness or the reaction to the physical disabilities and the society (social stigma). Some researchers have even suggested that it is the characteristic personality of Parkinson’s patients that has predisposed to the illness (i.e. increased the risk of getting Parkinson’s).

However, this “Parkinson’s personality” rule certainly does not apply to all patients. I personally know a very small number of Parkinson’s patients who are pleasant, submissive but very outgoing. These exceptional Parkinson’s patients have even reached out to the whole society, while declaring their illness openly to the whole world. In fact, the existence of such “unorthodox Parkinson’s personality” is a blessing for the Parkinson’s community, as these “unorthodox” Parkinson’s patients have overcome the social stigma and brought revolutionary changes to the Parkinson’s care in this country.

So far, I have met three such “unorthodox” but remarkable Parkinson’s patients. You have heard of the heroic stories of the late Mr. Lloyd Tan and Mr. Chee Liew Seong, who have been the key players in the history of Parkinson’s support group movement in Malaysia. The very fact that Mr. Lloyd Tan was subsequently discovered to have parkinsonism-plus syndrome, a more severe illness than Parkinson’s, made his personality even more remarkable.

The third “unorthodox” Parkinson’s patient is Mr. Teo Kim Hoe, 70, who is better known as “Hero Teo”.

“As far back as 1998, he was already noticed to have slowness of movement, and a hunched back with his head bent downwards (stooped posture). Even at that moment, his relatives had commented that the way he walked was different from the past - he had a tendency to walk on his toes. Once, my daughters and I were looking for him at a shopping center. He walked right past us without noticing us at all, as his head was bent downwards. That was how we knew something was not right about him. But, we did not have any clue about what he was suffering from,” recalled Mrs. Teo.

Mr. Teo was diagnosed to have Parkinson’s in 2005. He was already on some Parkinson’s medications when I first met him in 2006. At that time, his symptoms were fairly well-controlled. It was during this first meeting when I discovered that he had an inherited form of Parkinson’s, which is generally rare in this region. He has a total of ten siblings, two of whom also suffer from Parkinson’s.

Right from the first time I met him, I had noticed some remarkable characteristics in him. The most obvious was his strong optimism in coping with his illness. Just like other Parkinson’s patients, Mr. Teo has experienced many complications such as dizziness due to low blood pressure, insomnia and nightmares. Last year, he was admitted to my hospital for a sudden onset of slurring of speech, dizziness and limb weakness. The brain scan confirmed that he had suffered from a stroke. Despite this, he persevered and recovered completely within one week. His “never-say-die” attitude has helped him to pull through all these complications.

Another unique characteristic of Mr. Teo is his openness in facing his illness. With the help of his son-in-law, he started his personal blog (“Hero Teo - Chronicles of a PD fighter” at www.heroteo.com) in 2005. In fact, Mr. Teo is the first Malaysian Parkinson’s patient who has started a blog.

In his blog, Mr. Teo has described his illness in a very illustrative and comprehensive manner - almost every aspect of Parkinson’s is included. Despite not having any medical qualification, he has discussed many medical issues which are considered to be difficult for the general public. Once, he sent me an email, asking me about non-motor symptoms of Parkinson’s, a topic that no other Parkinson’s patient has ever discussed with me.

When I asked him why he decided to set up a blog, he said, “I have always wanted to tell the world how I fight my Parkinson’s. By creating a blog, I hope to send a strong message to all the readers that there are people suffering from Parkinson’s, who need the support of the general public. Malaysians need to be aware of the existence of Parkinson’s, and its physical, emotional and mental complications. Through this blog, I can share my experience on how I cope with and understand my illness.”

“Aren’t you worried about revealing your illness to the whole world? I am sure that you know about the social stigma associated with Parkinson’s, and the prejudice that people might hold against you,” I asked.

“Even though I have Parkinson’s, I don’t consider myself to be a disabled person. I know that nowadays we have effective treatment for Parkinson’s which can help me attain a fairly good quality of life. Furthermore, by revealing my illness to other people, it enables them to understand and help me to solve my problems. These are the reasons why I don’t feel embarrassed to tell the whole world that I have Parkinson’s,” he replied.

I have to admit that I was amazed and impressed by his reply. The truth is, the negative perception of Parkinson’s patients towards their own illness is one of the reasons that contribute to the social stigma. Many Parkinson’s patients consider themselves to be disabled or physically inferior, even before they face the general public. Coupled with the wrong perception of the general public about Parkinson’s, the social stigma of Parkinson’s is intensified. In other words, the Parkinson’s patients’ own perception of illness does have a significant influence on their long-term well being and social life.

Mr. Teo was clearly different from other Parkinson’s patients. He has a positive perception of his own illness - he does not consider the revelation of his illness as a sign of weakness. He does not care about the social stigma. All he cares about is to get better and go on with his usual life. He is more focused on the brighter side of his illness.   

Throughout these years, Mr. Teo is my very first Parkinson’s patient who has a very “physical” approach in coping with the illness. I have met many Parkinson’s patients who are involved in relatively light physical exercise programs such as Tai-chi and Wai-dan-gong. In contrast, Mr. Teo attends a more strenuous physical exercise program for five days in a week at a gym. During each session, he carries out many types of exercise programs such as muscle stretching, running on the treadmill, balancing on the “fit-ball”, kick-boxing and spinning (i.e. stationary cycling).

“I started out doing 3 - 4 hours of exercise per day due to my over-zealousness to overcome the barrier to my physical disability. However, I realized later that I could not carry on over-exercising at that rate, and have since cut back on the number of hours. Now I have learned to exercise more appropriately, so that maximum benefit could be derived,” said Mr. Teo.

“I believe that in addition to the Parkinson’s medications, complementary treatment, such as physical exercises, is also useful in maintaining good muscle tone, strength and posture. This is why I have engaged trainers to help me with my exercise programs at the gym. One of them trains me in yoga, to help improve my flexibility and posture (he visits me at home twice a week). Another trainer concentrates on building my muscle strength by carrying out exercises using weights. Another trainer specializes in building up my endurance, stamina, balancing, co-ordination and speed, by teaching me the kick-boxing,” explained Mr. Teo.

I doubt you can meet any other Parkinson’s patient of the same age who is so “aggressive” in carrying out physical exercises as Mr. Teo.

Even today, Mr. Teo is still physically fit, despite his age and ten years of Parkinson’s. As I write this article, Mr. Teo and his wife are preparing for a holiday in Bangkok. In fact, he has been traveling to many countries over the past few years, such as Thailand, Singapore and Australia. I am glad that he is making the best out of his old days.

What happened a few days ago was really amazing. The video recordings of Mr. Teo doing his exercises were displayed in his blog and the Lloyd Tan Parkinson’s Trust Fund website. It was a historical event because for the very first time, in this country (and also in this world, I believe), a 70-year-old Parkinson’s patient showed his remarkable physical endurance and optimism in doing the kick-boxing exercise. If you looked at his video recording, the first thing that comes to your mind is that whether Mr. Teo really has Parkinson’s. Even Mr. Teo himself jokingly told me several times - “I feel like a normal person behind the mask – could it be a fake Parkinson’s?”

I have to admit that my personal experience in treating Mr. Teo over the past three years has been really special and encouraging. At least I know that there are a few Parkinson’s patients who are different from the rest, and who attempt to make life better for others as well as themselves.

It is their “unorthodox” Parkinson’s personality that made Mr. Lloyd Tan, Mr. Chee Liew Seong and Mr. Teo Kim Hoe the heroes of the Malaysian Parkinson’s community.