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.

Lilly Chiew, 67-year-old, has been suffering from PD since the age of 55. She lives at a nursing home in Damansara Perdana, Kuala Lumpur. She has been my patient over the past seven years.

She was born in Malacca on the 4th June 1941, and belonged to a Peranakan Family (a mixture of Chinese and Malay descent). Co-incidentally, she was a distant cousin of Mr. Lloyd Tan Pao Chan, the founding father of the Malaysian Parkinson’s Disease Association. Her parents had divorced when she was just a few years old. Ever since she was young, life had been hard on her.

Peranakan family

Lilly’s mother (far right) was in her 20’s (not married yet) when this photograph was taken. She wore the traditional Peranakan costume (kebaya) when she was a teenager

Since young, Lilly and her mother had lived with a distant relative, who was kind enough to provide lodging and financial assistance. Lilly went to school at the age of six. Due to financial constraints, she had only three years of education.

Her mother, Mdm. Tan Chee Neo, had to work as a maid to make ends meet. Right from the early mornings, Mdm. Tan had to go to several homes to wash clothes and do the cleaning up, to earn a meager income.

When Lilly was old enough, she had to help her mother in her work. Lilly’s life was simple – waking up as early as 4 am to help her auntie baking the pineapple tart, which her auntie sold to earn her living. By 7 am, Lilly had to leave her home to continue her mother’s work. In order to save money, she would walk for a long distance to her destinations instead of taking the bus. At that time, she earned merely RM 18 dollars a month.

“Life was difficult in those days. By the time I reached home, it was already about 4 pm. Sometimes I skipped my lunch because I was just too tired. I wonder whether it was my hectic daily schedule and tough work all these years which caused me to suffer from my illness today,” said Lilly.

In 1969, at the age of 28, Lilly moved to Petaling Jaya, Kuala Lumpur, ¬†to work as a maid at her cousin’s home. During the first month, she cried almost every night, missing her mother. As such, her mother had to join her subsequently.

By the age of 55, she started having the early symptoms of PD. As her illness progressed, she developed severe dyskinesia, the involuntary body movement due to her medication (levodopa). By the age of 60, she was just “on” for two hours following each dose of medications. During the “on” period, she had terrible and severe body jerking which crippled her. When she was “off”, she could hardly move. Once, I had suggested to her that she underwent brain surgery but she could not afford it. As such, she continued to suffer.

When she was 60, she had to give up on her work. As her mother had already passed away at this stage, she was alone (she is not married). She had to stay at the nursing home, till today.

The lonely journey

Lilly pondering on her future

She has lived a long, lonely life. Occasionally, her cousins visit her and bought her food and daily necessities. But she was unfortunate that she could not live a normal life as other healthy people, who got married and have families. Her social life is so limited – she had no chance to even go out to the shopping centres. When I brought her to the Petronas Twin Tower at Kuala Lumpur a few months ago, she said that she could not remember the last time she had been to Kuala Lumpur.

Freedom 

25th May 2008 – Lilly (on the wheelchair) with Ms. Patricia Ho (in yellow T-shirt) and her maid at the Petronas Twin Tower, Kuala Lumpur

Today, she is permanently confined to her nursing home. Even to walk to the bathroom in the early mornings, she has to ask someone to help her. Most of the time, she lies motionless on her bed. In fact, she is under-medicated. When I suggested to her that she might be able to walk to the shop if she increased the total daily dose of medications, she said, “I am much more afraid of the involuntary body movements (dyskinesia) which I will experience when I take a higher dose of medications, than my ‘off’ periods.”

Birthday girl

25th May 2008 – Lilly (on the wheelchair) with friends on her belated 66th birthday which was celebrated at a restaurant in Atria shopping complex, Damansara Jaya, Kuala Lumpur

Knowing her very well, I think that she was not just worried about her dyskinesia. As a result of her long and tough life journey, she had been forced to lower her level of expectation. She was contented with just being confined to her home. I think she had probably learnt to suppress all the needs for outdoor activities such as going for holidays and shopping. Somehow, over the years, she had accepted the fact that she had to live a very long, simple and lonely life.