Creating history with the Penang Parkinson’s Disease Association

Anthony SB Thanasayan

Anthony SB Thanasayan is a wheelchair user who is powered by his service dogs who help him stay on top of life. He is president of Malaysia's first and only animal-assisted therapy society called Petpositive.

Anthony SB Thanasayan

Published: 3 November 2014

Madelene Ong (front row, fourth left) holds a tambourine at the launch of the Penang Parkinson's Disease Association (PPDA). – November 3, 2014.

 

Local history was created on October 26 for persons with disabilities in Penang with the launching of the first nongovernmental organisation for People with Parkinson's (PwP) in the popular island.

Called the "Penang Parkinson's Disease Association" (PPDA) or in Bahasa Melayu, "Persatuan Penyakit Parkinson Pulau Pinang", the epoch-making morning event began at 9am and ended at lunchtime.
It was held under a large tent in the open field at the Polo Ground situated in front of the governor's mansion in Seri Mutiara.
Jointly organised by the Penang Multiple Sclerosis Support Group (PMSSG), the occasion drew as many as 120 persons. They comprised committee members, volunteers, sponsors and members of the public.

Participants were treated to a variety of activities.
These included a couple of speeches by both presidents of the organising societies.
 

Peter Lim spoke first on behalf of PMSSG whilst Madelene Ong gave her speech for the PPDA.
 

This was followed with the customary ribbon-cutting ceremony to declare the event open.
 

The presentation of donations took place afterwards by various companies and groups to both societies.
 

An informative talk about Parkinson's disease – as well as multiple sclerosis (MS) – was delivered by a Penang neurologist with a special expertise on the conditions.
 

The audience were all ears when he disclosed the latest findings and treatments on Parkinson's and MS. There is no cure for both diseases to this day.
 

However, the most interesting part of the event was a special walk to create awareness about the two health issues.
 

Each participant had to choose a partner for the walk.
 

They had to tie one of their legs with the other as a couple for the exercise which lasted about 20 minutes.
 

The purpose of the session was to illustrate the fact that with or without disabilities, all human beings are interdependent on each other.
 

The half-day programme also included a therapeutic drum musical session. It went on for almost an hour and had almost everyone dancing to its pulsating and intoxicating rhythm and beats.
 

The lucky draw was the final activity for the day before everyone left with smiling faces.
 

After the event, Madelene Ong, 47, who lives in Farlim, Penang, told me she was extremely happy that everything turned out to be a great success.
 

"The estimated 400-odd patients with Parkinson's in the island – and others in future – have an NGO support group to turn to now," said Ong who works as a part-time state registered clinical researcher.
 

"Previously, PwP in Penang had to depend on the Malaysian Parkinson's Disease Association all the way in Kuala Lumpur for support, which they did very well, but with this new chapter and NGO, help is much closer now," she said.
 

Ong was inspired to take up the struggle of PwP after her dad, Peter, was diagnosed with the sinister disease in 2011. He passed away last year.
 

Today Ong vows that she is here to stay for PwP.
 

"We now have a little over 20 members in PPDA. The more mobile ones attend our monthly meetings which proves to be a very empowering experience for them," explained Ong.
 

"However, the bigger challenge will be to get members in wheelchairs who are in the advanced stage of Parkinson's to also take part in our programmes."
 

On the issue of welfare, Ong said the PPDA's major task is to get the government to recognise all PwP as disabled persons – regardless of the fact whether they are at the early, intermediate or advanced stage of the disease.
 

PPDA, which was officially registered on the August 8 this year, had made a request of this through a letter by a Parkinson's specialist. 

 

However, it was rejected by the Welfare Department.
 

Several members from PPDA faced the same situation when they tried to apply directly for the disabled identification card from the government.
 

Madelene can be contacted at 0162054388 or go to the Penang Parkinson's Disease Association on Facebook. – November 3, 2014.  

* This is the personal opinion of the writer or publication and does not necessarily represent the views of The Malaysian Insider.

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