World Parkinson's Day: Coping with Parkinson's
ACTOR Michael J. Fox, boxer Muhammad Ali, artist Salvador Dali, Pope John Paul II, and political figures Adolf Hitler, Mao Zedong and Deng Xiaoping all have something in common - they are all People with Parkinson's (PwP).
Parkinson's Disease (PD) is a degenerative illness of the brain that is characterised by an inadequate amount of dopamine in the brain.
Dopamine is a neurotransmitter that is needed for the smooth and well-coordinated movements of the body.
Having fun: Lew (right) dancing with Parkinson's patient Ninie Lim. Dancing with music encourages movements of stiffened joints for Parkinson's patients.
"Being at home alone can be very depressing for PwP, which is why we want patients to come out of their house and take part in MPDA's activities," said Malaysian Parkinson's Disease Association (MPDA) president Sara Lew.
"MPDA was formed in 1994 by its founder and PD patient Lloyd Tan, who passed away last year."
Its main aim is to provide support and improve the quality of life for PD patients and their families.
It is a self-help organisation where members, who comprise PwP, caregivers and supporters, learn from and support one another.
MPDA's premises houses the Parkinson's Club, which organises and coordinates all social, recreational and physiotherapy activities for both PwP and their caregivers.
Playing football: Connolly (right) and another volunteer encouraging a Parkinson's patient to kick the ball. According to her, this activity encourages the coordination of mind and body movements.
MPDA also provides services like Berita Parkinson's - a quarterly newsletter for members to share activities and the medical updates, home visits for patients and wheelchair support for PwP.
"We have activities like vocal classes for patients to improve speech articulation, physiotherapy for them to learn proper ways of exercising and improving mobility, qi gong classes, counselling by MPDA committee members and social interaction for both patients and their caregivers to share experience and exchange notes.
"We're planning to have more outdoor activities this year. Fresh air does wonders to lift the patients' spirits," said Lew, whose father has been a patient for 18 years.
"PwP can do a lot of things and enjoy a good quality of life, so long as they make the little bit of effort. It helps when they motivate each other to generate more confidence."
MPDA has so far organised a trip to an orchard farm and hot air balloon rides during the World Parkinson's Day celebration, and plans to have other outdoor outings like a visit to the FRIM forest, day trips for movies or visits to tourist spots.
Love and devotion: Lee Kim Hiang helping his wife Lim run through her qi gong exercises. He speaks fondly of his wife, a retired midwife whom he describes as patient, hardworking and very dedicated to her job.
"Our future plan is to have a bigger place where we can carry out day care activities. Caregivers can drop patients off for half a day for them to socialise and enjoy activities," said Lew.
She emphasised that PwP should know that despite their condition, they can overcome their personal obstacles through hard work, patience and determination.
LÝba Connolly, who has been an active volunteer for the past year, echoed Lew's sentiments and said that anything is possible when you put your mind to it.
The Czech Republic native conducts a weekly class at the Parkinson's Club and helps out with MPDA's activities.
"Social contact is very important. Coming to MPDA is like having a family you can have fun and laugh with together.
"Parkinson's is a misunderstood disease because of the patients' mask-like expressions. People may think they're retarded but PwP are intelligent people whose muscles just can't coordinate.
"Social interaction helps to pull a person out of their shell and unveil their 'mask'," said Connolly.
PD is a cause close to her heart because her mother was a PD sufferer who passed away in 1997.
Connolly keeps herself active in various social work, and believes that she still has a lot more work to be done.
"When you help people, you're helping yourself. When you make people happy, you're also happy," she said.
Malaysian Parkinson's Disease Association
No. 35, Jalan Nyaman 10,
58200 Kuala Lumpur.
T: 03-7380 6685
F: 03-7982 6685
Operating hours: Tues - Sat; 9am - 5pm
(Donations to MPDA are tax exempt)