A former bank manager-turned-volunteer put Malaysia on the world map recently.
Early June, Sara L. H. Lew was presented with the WPC Robin A. Elliott Award for Service to the Community at the 5th World Parkinson Congress held in Kyoto, Japan.
The award, given by the World Parkinson Coalition, was in recognition for her work with Parkinson’s disease patients and caregivers for the past 24 years. It was also to recognise her efforts in helping to raise RM630,000 within six months to purchase a corner single-storey terrace house in Taman Gembira, Kuala Lumpur in 2014, which serves as the premises of the Malaysian Parkinson’s Disease Association (MPDA).
Lew was surprised yet elated with her achievement. “The (non-monetary) award was not just a recognition of my work but also MPDA’s,” she said.
Since 2012, Lew has been involved in the World Parkinson Congress and sits on its leadership forum committee. She takes part regularly in the forum via teleconferencing.
MPDA was formed on Sept 12, 1994 and has 300-odd active members comprising Parkinson’s disease patients and caregivers mostly in the Klang Valley.
It is the largest association of its kind in Malaysia and is run with donations from well wishers and the public. For 10 years, it did not have any premises until 2005, when it rented a house in Kuala Lumpur. Eventually, the association bought over the premises and also rented the house next door for its activities.
A good cause
Lew’s late father, Lew Teh Kun, was a textiles merchant who was diagnosed in 1990 with Parkinson’s disease at the age of 60. In 2005, her father became blind due to glaucoma.
He passed away in 2011 at the age of 81. Lew’s aunt, 93, has also been living with Parkinson’s for the last 12 years.
Lew got involved with MPDA in 1995 after regularly accompanying her father to the association. She was first elected as president of MPDA in 2000 for a two-year term. When she was re-elected in 2006 to helm MPDA, she was hesitant at first.
“I was reluctant to take on the post as I was planning to further my studies,” said Lew. “However, I felt that I couldn’t forsake them (the Parkinson’s patients) because the association had given hope to my father,” she said.
Over time, she came to realise the importance of her role in MPDA.
“I like my members and I get to have a close rapport with them. I ‘see’ my dad (as a Parkinson’s patient) and also, my mum and myself (as caregivers), and I can feel what they’re going through,” she said.
Lew’s mother passed away recently at the age of 89, some three weeks before she received her award.
“My dad had a 21-year-old journey as a Parkinson’s patient. When I see a new member, the rapport starts. I feel I know him or her,” said Lew, adding that what’s sad was also seeing older members regress and eventually pass away.
Lew treasures a poignant memory with her late father in his last days. Lew’s thesis for her Masters degree was on Effects of Speech and Voice Problem on Quality of Life of People with Parkinson’s.When she visited her father, who was admitted to the hospital after a fall, he would always ask her, “Have you finished?”
Towards the end of her father’s life, she told him she has finished her thesis. Her father passed away two weeks after that.
Parkinson’s disease – a progressive nervous system disorder that affects movement – has a social stigma attached to it. According to Lew, those with Parkinson’s may decide to stay home and become anti-social as the disease progresses, limiting social interactions. They prefer to hide at home and can end up being depressed.
“With MPDA, my father was able to go to the association to socialise and share his experience with others, although he stayed away at the later stage because of his blindness.”
A Parkinson’s support group, she felt, was good because there would be gatherings where people with Parkinson’s and their caregivers could share and exchange helpful information.
Taking a different turn
Lew left her career in banking in 2003. After that, she took a break of about a year before signing up for a four-month TESL (Teaching English as a Second Language) certificate course at a private language centre in Petaling Jaya.
In May 2005, she worked for several months at the Association of the Stock Companies of Malaysia (ASCM) as an executive. In September that same year, she left her job to do her Masters in English as a Second Language (ESL) at Universiti Malaya Kuala Lumpur. She also took up a part-time English lecturing job at the university from August 2007 until she graduated with her Masters in 2011.
Lew worked long hours during her 20 years in the banking line. She also experienced two armed robberies during that period and having had to deal with post- traumatic stress, she began to treasure her life even more and resigned from her job.
“Partly, I called it quits because I did not want to experience a third robbery!” she said with a laugh, animatedly relating the goings-on in the robberies. More importantly, Lew felt that she could not cope with juggling between her private life, helping to take care of her ailing father, a demanding job and volunteering at MPDA.
“I was the ‘most mature’ student doing my Masters in English as a Second Language. But I stuck to it even though it took me the longest time (of a maximum of five years) to finish my Masters,” said Lew, who holds a Degree in Sociology and Anthropology from Universiti Kebangsaan Malaysia.
Living with no regrets
Away from her volunteer work, Lew, who is single, lives in Sri Petaling and enjoys cooking and gardening. Every Tuesday, she will cook lunch for all the Parkinson’s patients and caregivers who come for activities at MPDA.
Lew also grows her own vegetables, including kai choy (Chinese mustard) and long beans, and even rears tilapia (about 70 fishes) in a pond built by one of her brothers.
She said, “When my father was alive, he would come by my house to do tai chi and gardening, which was therapeutic. For him, the activity gave him something to look forward to each new day, such as harvesting the grown vegetables from the garden for the table.”
Asked if she would do anything differently with her life, Lew said: “I would like to have my own family. But I know I would not have had the time to devote that much time to MPDA if I were married with children.
“I feel that people with Parkinson’s who are married generally have a better quality of care than their single counterparts. While I do enjoy singlehood and have no regrets, I know life is good as long as I am healthy,” she ends.