Life & Times Cover Story
COPING with Parkinson's disease can be disheartening, as 66-year-old Yap San Raw can readily testify.
"I was angry because of the frustration of not being able to move my limbs the way I wanted. I need to make several attempts before I succeed in every step I take. And there are times I can't even do that," he said.
Parkinson's is a disorder of the nerve cells in the brain that controls muscle movement. Symptoms include trembling of hands, arms, legs, jaw and face; stiffness of the arms, legs and trunk; slowed movement; poor balance and coordination; and depression and sleeping problems. In serious cases, people may have problems walking, talking and speaking.
Coming to terms with his illness was difficult for Yap, who was diagnosed with the disease in 2005.
It was only when he attended physiotherapy sessions at the Parkinson's Centre of the Malaysian Parkinson's Disease Association (MPDA) at 35 Jalan Nyaman, Happy Garden, Kuala Lumpur, that he felt "less like a man waiting to die".
Make friends and come out to play with those suffering like you. That's the way to cope well with Parkinson's disease.
The MPDA provides emotional and educational support to sufferers and their caregivers. Besides physiotherapy, social and recreational activities like dancing, singing and qi qong are also taught at the centre.
Fifty-six-year-old Fong K. Yun enjoys its dancing and singing classes, as well as the company of his fellow sufferers.
"Singing exercises my vocal chords while dancing improves the flexibility of my limbs."
Initially, self-conscious about socialising, both men were glad that they took that difficult first step to visit the centre and meet others.
"This is what the MPDA hopes to encourage among those with the condition who are shying away from social contact. Although living with Parkinson's can be difficult, they need to come out and socialise," said MPDA vice-president Sivaraman Kannan, who said many stayed at home, too frightened, depressed and ashamed to mingle with others.
A retired engineer, 70-year-old Sivaraman is no stranger to Parkinson's. He has had it for 11 years.
"I try to do as much as possible, not allowing the disease to limit me. I exercise as well as drive around. Helping out with the MPDA keeps me occupied and mobile. If I just stayed at home and remained sedentary, I would have wasted away muscle tone."
He said participating in the centre's activities helps people get support and understanding from those who can empathise with them. Socialising also forces them to move about and get their needed exercise.
"Most don't exercise at home. But when they see others engaging in activities, they tend to push themselves."
The association also hopes to increase awareness of the disease.
Association president Sara Lew said: "Some still confuse it with Alzheimer's disease. Because of their fixed expressions, those with Parkinson's are often regarded as retarded or mentally ill. We want to educate sufferers that they can lead normal lives, if even there are some limitations. It's not about being perfect at everything, but about making friends and trying new things."
She said the MPDA organised a hot air balloon ride for its members and their caregivers in April on Parkinson's Day.
"The idea was to get people out of their cocoons to enjoy life and be more adventurous. Initially, they were nervous, but when they saw their friends go up, they were game to try it," said Lew.
She said aside from organising more outdoor activities, the association is also keen to renovate the centre's premises to make room for more members and activities that can be run simultaneously.
With currently only one room to hold its activities, physiotherapy, qi qong, dance and singing classes can only take place once a week. The centre plans to eventually include cooking and craft classes, as well as run a day-care centre.
"Such a centre would help alleviate their depression and loneliness," added Lew.