Parkinson’s disease not end of the world

Founding member of the Malaysian Parkinson's Disease Association Leong Chung Thad (second from right) being honoured on the 20th anniversary of the founding of the association. – Pic courtesy of Anthony SB Thanasayan, September 21, 2014.Mention the words "Parkinson's disease" (PD), and it is likely to send a cold shiver down our spine.

This is not really surprising, especially when you consider Parkinson's is a disease of the nervous system which causes the muscles to become stiff and the body to shake.

And that the condition gradually worsens as a person gets older.

However, that rather seemingly grim prognosis was no excuse for more than 200 people to turn up and cram the ballroom of a popular hotel in Petaling Jaya, Selangor, recently.

They came with their wheelchairs and walking sticks. And they were surrounded by their loved ones and friends acting as their caregivers.

They were there to celebrate the anniversary of two decades of awareness about Parkinson's disease in the country.

This is all thanks to the unrelenting effort of the national Malaysian Parkinson's Disease Association (MPDA). It was established on September 12, 1994 in Kuala Lumpur.

"The response was most encouraging," said a beaming Sara Lew, president of MPDA.

 "We were expecting 150 people, but imagine our joy when 230 in all turned up!"

Lew first joined MPDA a year after it began. She signed up with the society because of her father. He had PD for 21 years until he died in 2011. 

“Opportunities for persons with Parkinson's (PwP) to be able to get out and integrate with the rest of society such as what we did are extremely important.

"We witnessed so many smiling and positive faces among our PD patients so much so that even the healthcare specialists whom we had invited took notice of it," Lew went on to point out. 

"PwP need to realise that they are not – and never alone – as they battle their disease. Our event gave them the chance to meet others with the same condition so that they can be empowered through the experience."

Lew said the same positive effect works for caregivers of loved ones with Parkinson's disease. 

"By mingling around with other families with PD, they were able to share their struggles and create a bond with each other in order to collectively stay on top of the disease."

According to Lew, there is also strength, confidence and hope for PwP's and their families when they arm themselves with information about the disease.

For instance, learning about all the latest research on Parkinson's and the discovery of new treatments to slow down the disease and its availability locally is helpful for a PwP – even though no known cure for it exists.

The MPDA also does it part to conduct regular activities, such as physical exercises, singing and dancing at its Parkinson's centre. This is to provide its members with opportunities to come together and meet each other.

The centre, which started in 2005, is at 35 Jalan Nyaman 10, Happy Garden in KL. Some call it as "the happiest place on earth!"

Two Malaysian PwP's individuals were recognised for their long and continued struggle with PD at the MPDA's 20th anniversary event. PwP's present were from 40 years of age to more than 80.

It is estimated that 1% older than 60 and 3% older than 80 have Parkinson's disease. Although there is no official statistics, it is estimated by medical experts that at least 50,000 people have PD in Malaysia.

It is believed that one in 500 people of the population worldwide has the condition.  

Some of the well-known names with Parkinson's are Muhammad Ali, Michael J. Fox and more recently, the late Robin Williams.

The participants in the anniversary event were reminded of Williams' quote in his movie, Patch Adams: “If we're going to fight a disease, let's fight one of the most terrible diseases of all, indifference."

For information on PD, please contact MPDA at www.mpda.org.my or call 03-7980 6685. – September 21, 2014.