It has been well documented in the literature that Parkinson’s is associated with a certain type of personality. They tend to be “introverted” 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 clinic. In general, they are not outgoing. Most of the time, their daily activities are confined to their home, 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, the reaction to the physical disabilities or society (social stigma). Some researchers have even suggested that it 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 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 “atypical Parkinson’s personality” is a blessing for the Parkinson’s community, as these “atypical” 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 “atypical” 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 much more severe illness than Parkinson’s, made his personality even much more remarkable.
The third hero of the Malaysian Parkinson’s community is Mr. Teo Kim Hoe, 71, who is much 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 previously – he had a tendency to walk on his toes. Once, my daughters and I were looking for him at a shopping centre. 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 this moment, 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 eight 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 sudden onset of slurring of speech, dizziness and limb weakness. The brain scan confirmed that he had suffered from 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” - www.heroteo.ikonxept.com) in 2005. In fact, Mr. Teo is the first Malaysian Parkinson’s patient (and the only one) 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, something no 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.”
“Don’t you worry 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 have 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 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 pubic. 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.
Throughout all these years, Mr. Teo was the 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 much more strenuous physical exercise program for five days in a week at a local health centre. During each session, which lasts about 3-4 hours, he carries out all sorts of exercise programs such as muscle stretching, running on treadmill, balancing exercise on “fit-ball”, kick-boxing and spinning (i.e. stationary cycling). He even hired an instructor to teach him Yoga twice a week at home. In fact, I have never met any Parkinson’s patient who is so aggressive in carrying out physical exercises.
“I believe that in addition to the Parkinson’s medications, complementary treatment such as physical exercise is also useful in maintaining good muscle tone, strength and posture. This is why I have hired two trainers to help me with my exercise program,” commented Mr. Teo.
Even today, Mr. Teo is still physically fit, despite his age and having Parkinson’s for ten years. As I write this article, Mr. Teo and his wife are preparing for a holiday I Hong Kong. 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. Don’t mess with me – Mr. Teo doing his kick-boxing exercise
I have to admit that my personal experience in treating Mr. Teo over the past two years has been really special and encouraging. At least I know that there is a minority of Parkinson’s patients who are different from the rest, and attempted to make life better for the others.
Mr. Lloyd Tan, Mr. Chee Liew Seong and Mr. Teo Kim Hoe are the heroes of the Malaysian Parkinson’s community.