Rare Parkinson's Heroes Who Changed the World
Mr. Lloyd Tan is the icon and hero of the Parkinson's community. His spirit lives in us forever. Let us feel his energy as he guides us to live with Parkinson's, reaches out to us to give hope and inspiration.

6th Sept 2009.

The long wait for DBS surgery

Feeling bored with the hectic life in Kuala Lumpur, I decided to drive to Port Dickson during one weekend in August 2009. I was curious about how the town looked like as I have never been there before. But there was also another reason why I chose that destination. Ms. Khoo Siew Lay, a 51-year-old friend, lives in Port Dickson. Being one of the nicest persons I know, I was tempted to pay her a surprise visit.

Only when I had passed by Seremban, which is just about 15-20 minutes drive from Port Dickson, I made a phone call to inform her that I was about to reach her home. She was really surprised to receive my phone call, but sounded happy to know that I was visiting her. When I asked her whether she could take part in a video-recorded interview which I would post in my website, she readily said “yes, of course”. She laughed her heart out when I asked her to dress up and look “sexy” for the purpose of the video recording.

She lived on the third floor of a shop lot. When I reached the entrance of her home, she was smiling and laughing as she welcomed me. That is her special character ᾢ despite what she has gone through for the past 13 years, she has always been able to maintain her good sense of humour. She did look nice and elegant, wearing a long white dress (she had obviously anticipated a video recording).

I sat down with her at the living room, while enjoying the moon-cake that her brother served. I asked, “How has your life been lately?”

She replied, “Well, my life is quite monotonous and dull. I do the same things everyday. I seldom go out due to the frequent falls that I started having one year ago. It happens quite suddenly. My legs get jammed when I start walking or turn my direction while walking (please refer to video-khoosl-1)”

 

“My body movement is unpredictable nowadays. There are good (“on” periods) and bad (“off” periods) times. I need to take my medications six times a day.”

“Every morning I wake up at 5.30 am to take the first dose of medications. By 6.15 am, I am already “on”, and my mother drives me to a nearby museum where I jog for about 30 minutes. I run up and down the stairs of the museum, looking just like any other healthy person. Once, I even overtook a man who was also jogging, and he told me that I looked like an “athlete”. But the same man who saw me running like an “athlete” could not believe his eyes when he saw me in my “off” periods. I could hardly walk at these times and my hands were trembling. Sometimes, the general public thinks that I am trying to deceive them,” she added.

When you see her during her “on” periods, you would not have any clue at all that she has Parkinson’s. In fact, she is a young-onset Parkinson’s patient (she was diagnosed to have Parkinson’s at the age of 38).

She was perfectly right about the deceptive nature of Parkinson’s. The general public finds it very hard to understand how a “healthy” person (the “on” periods) can turn into a “sickly” person (the “off” periods) within a few hours. “Once, I struggled to get into a bus even with the help of my mother. One hour later, when I was “on”, everyone in the bus was shocked to see me alighting from the bus looking like a healthy person,” said Ms. Khoo.

Another reason why Parkinson’s is so deceiving is the very fact that some Parkinson’s patients find it easier to walk up and down the stairs than walking on the floor. Ms. Khoo showed me how she could run up and down the stairs at her home .

 

A peculiar feature of Parkinson’s is patients can overcome the jamming of the legs (i.e. freezing) by using visual cues such as stepping over another person’s foot or horizontal lines on the floor. In the case of walking up the stairs, the edge of the steps acts as a visual cue.

When I started the video-recorded interview, she initially found it difficult to start narrating her story. It was easy to understand this. She had Parkinson’s for 13 years ᾢ it must have been a very long journey which is difficult to be summarized in just a few minutes. When she could not find the right words and did not know where to start, she burst into laughter, revealing her humorous side again (please refer to video-khoosl-3 and video-khoosl-4 )

 


In view of this, I suggested to her to write down her story on a piece of paper. Finally she managed to “pour out her feelings”, as follows.

“When I was first diagnosed to have Parkinson’s, I was stunned and devastated. I could not accept my diagnosis at that moment. I had to quit my job at Yamaha music centre since ten years ago. This illness made me feel terrible. It is hard to describe the mental agony and suffering that I have gone through. Over the recent years, my illness has reached the advanced stage. As such, my doctor advised me to undergo the brain surgery. I hope that after the brain surgery, I will be able to live a normal life again.”

 

While the video recording was carried out, it was very obvious that she had dyskinesia, the involuntary body movement which is a side effect of levodopa treatment. Her head was shaking and twisting uncontrollably. This kind of uncontrollable body movement is certainly embarrassing and easily noticed whenever she goes to public places. No wonder she had decided to stay at home almost all the time.

Ever since last year (2008), I had explained to her that she needed the DBS surgery. In fact, being a young-onset Parkinson’s patient who has lost her job, she is certainly an ideal candidate for the surgery. In fact, she fulfils all the basic requirements for the DBS surgery. I told her that for young-onset Parkinson’s patients, one of the objectives of the DBS surgery is to help patients resume their career.

Unfortunately, she had to wait for Professor Tipu Aziz, the leading world expert on DBS surgery, to arrive at Kuala Lumpur in March 2010 and perform the surgery on her. She is simply unfortunate to have to endure these sufferings and falls till next year. She has been waiting for two years for the DBS surgery. Hopefully, when the DBS surgery service is well established in Malaysia, Parkinson’s patients do not have to wait for so long for the surgery.

For other Parkinson’s patients who have milder illness, two years may not seem to be a long time. But for Ms. Khoo, who suffers from advanced stage Parkinson’s, two years is a long waiting period.

When I asked her about her hope after the DBS surgery, she said, “I don’t expect to work anymore. But I do hope that I will have a better life and won’t fall down whenever I walk. Getting better is enough for me.”