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Helping Others with Parkinson's, 23th April,1996 by New Straits Times

New Straits Times, Tuesday, April 23, 1996

Life & Times
Helping others with Parkinson's

(Lloyd Tan, founder of the country's Parkinson support group, tells GERALDINE ALBELA how he learnt to cope with the disease and the adjustments he makes daily.)

TAN... Speaking expressively with his hands and eyes, to make up for his slow, stilted speech after being afflicted with Parkinson's disease.
Pictures by: ZAHARI ZAKIRIA.

L LOYD Tan is struggling to say something. His hands move, he clenches his fingers and his eyes tell me that he has something extremely important to say but the words are not coming out.

I can sense his frustration but do not know how to help.

So I wait.

As I do, I realize that I am watching a man struggling with Parkinson's, a degenerative disease characterized by tremors and muscle rigidity caused by a disorder in the basal ganglia in the brain.

If you look at Tan, who is 60, l you wouldn't notice anything unusual. Yet, he has had the disease for about eight years and is now coping admirably with the physical limitations caused by Parkinson's.

But it hasn't been easy.

Talking is difficult. As he tries to converse with me, he has to roll his tongue at intervals to clear his throat. This, I'm told, is common among patients with Parkinson's.

And, as I struggle to read his lips to hear the words, ever so softly spoken, I realize it is not so important to hear the words as it is to understand his feelings about Parkinson's and how dramatically it has affected his life.

Undeniably, when Parkinson's first set in, it caused severed depression. At times he could not even walk up a flight of stairs or run or write properly. Occasionally, his hands would "freeze" and he could not continue combing his hair, or buttoning his shirt.

He also felt tired almost all the time, His movements were slow and lethargic while his speech became so soft that his wife thought she had gone deaf.

The symptoms persisted for almost two years before he realized it was Parkinson's. By then the disease had progressed to a stage where he could not manage strenuous work.

His writing became smaller and almost illegible; gradually he could not even form the letters properly. Inevitably, frustrations set in. After that, anger.

"He would get fed up easily. The smallest thing would anger him," his wife of 32 years, Yap Yun Kin, said.

YAP... Tan's wife of 32 years has been a pillar of strength since his illness.

"Accept the fact that you have the disease" Lloyd Tan

When he could not control the anger, he would break the pen he was trying to write with, and then, not satisfied, crush it to pieces as if to quell the turmoil within.

At first, Tan could not accept the fact that he was suffering from Parkinson's.

It was only after he went to the United States to see a specialist who confirmed the diagnosis that he accepted his fate and joined a support group there.

This was when I learnt that there were many others who were worse off than me. It taught me how to cope with the disease," he said stiltingly.

After his return he started a support group locally, reaching those who had the disease through his contacts with friends. The first meeting was held in December 1993, and a committee was formed the next month.

There were fewer than 10 members comprising patients, their spouses and care-givers. The committee comprised L. K. Nathan, Wong Twee Jin, Choo Chiew Pien, Leong Chun Thad, Sandra Thesseira, Koo Tan Choo, Lillian Ang and Teresa Barbosa.

The Parkinson's Association of Selangor and Federal Territory, the third such association in Asia after Japan and Hong Kong, was registered in September 1994. The aim was to give patients with Parkinson's support, a way to exchange ideas and the chance to attend talks given by doctors from University Hospital. Help and support also came from Parkinson's associations in the United States, Australia, New Zealand and Britain.

Today, the membership has grown to 80. They come under three categories: patients, care-givers and supporters from the public.

These days, Tan has learned to cope with the disease, by accepting that there are limits to what he can do. If he finds he cannot manage something, he looks for an alternate way of working the problem out. "I will sort out systematically what I have to do, " he said. "Other gave me insight into how to cope with the problems I faced in my life and I'm grateful for that."

He exercises regularly on his stationary bike at home, as he finds it beneficial, and follows an exercise video-tape specially meant for Parkinson's sufferers. He also goes out, more ever since he joined a senior citizen's club in Petaling Jaya with his wife.

"The important thing is participation, and if you accept that you have the disease, you will not feel shy to talk about it with others," he said.

"Some may feel ashamed and confine themselves to the homes out of self-pity. You must remember that no two persons with Parkinson's are the same."

Compiled by Sara Lew 2008