Parkinson's not a 'doomsday'

The Jakarta Post ,  Jakarta   |  Mon, 05/12/2008 10:51 AM  |  National

Dozens of Parkinson's disease patients took part in a campaign Saturday to raise public awareness of the incurable disease and encourage moral support for patients in their fight against the illness.

In the event at Menteng Park in Central Jakarta, co-hosted by the Health Ministry and the Indonesia Parkinson's Care Foundation (YPPI), patients took part in light exercises and shared stories of their experiences with the disease.

"Suffering Parkinson's disease is not the end of the world. You must believe you can fight it. Don't take pity on yourself and don't be ashamed," said Shirley, 57, who has lived with the disease for 11 years.

"The most important thing is to be active and keep on moving. Activities and routine exercises are good for improving your health."

Shirley, a former tai chi trainer, said she had lost her self-confidence after she was diagnosed with the disease in 1997.

She could not move the right side of her body. She locked herself in her bedroom because she was ashamed of meeting other people.

After two years, she realized there was no use in isolating herself from other people.

"Lying in bed and doing nothing actually made my condition worse. Luckily, I have a family that fully supports me in my daily activities," Shirley said.

She now has the appearance of someone in good health. She practices Chinese calligraphy and will hold an exhibition in October.

YPPI chairwoman Banon Sukoandari said Shirley's story could be an inspiration for other Parkinson's patients across the country in fighting the disease.

"We're on a mission to educate people about Parkinson's disease. The most important thing is boosting patients' confidence," Banon said.

She said the foundation had no data on the number of Parkinson's disease patients in Indonesia.

Director of noncommunicable diseases at the Health Ministry Yusharmen, who attended the event, agreed on the importance of self-confidence.

"We want Parkinson's patients to have a good quality of life and to be able to take part in society. We encourage other people to always support them," Yusharmen said.

Parkinson's disease is a brain disorder that occurs when certain nerve cells in part of the brain die or become damaged.

About 10 percent of cases are genetic. The remainder are caused by external factors such as repeated trauma on part of the body or exposure to chemicals.

Key symptoms of the disease include tremors (shaking), slowness of movements, rigidity (stiffness), cramped handwriting, a shuffling walk and difficulty balancing.

The disease affects both men and women almost equally and does not vary across social, ethnic, economic and geographic groups.

There is no cure for the disease. Once diagnosed, patients must take medicine regularly for their rest of their lives.

Boxing legend Muhammad Ali is among those living with the disease.

Banon said although Parkinson's disease usually developed after the age of 60, there were many Indonesians sufferers younger than 40.

"We are very concerned more young people are developing the disease. We are still trying to find out why this is happening. We also encourage them to keep up their usual activities," she said.

To help prevent the disease, Yusharmen suggested people adopt a healthy lifestyle.

"Do regular exercise to stretch your muscles and eat nutritious food," he said. (trw)

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