Making The Effort

Making the extra effort

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.

Published: 25 January 2016

 

Nearly 200 persons – a large number of them People diagnosed with Parkinson's and their caregivers – filled up the hall of the Petaling Jaya City Council's (MBPJ) community library recently.
The purpose of this was to focus on their disease – and at the same time to learn new and latest tips on how best to stay on top of their conditions.
 

The four-hour event, held on the 16th of this month, was put together by the Kuala Lumpur-based Malaysian Parkinson's Disease Association or MPDA.

For the benefit of those who are not aware, Parkinson's is a movement disorder that affects mobility of the person as the condition progresses. 

 

The national NGO has been serving Malaysians with Parkinson's in the country for more than 20 years.
 

Here's why I think that this event was most extraordinary.
 

The room was filled with most of the right people.
 

Almost 80% of the 180 participants present at the MPDA session were persons with Parkinson's themselves.
 

If it was not them, it was their caregivers made up of husbands, wives, sons, daughters, relatives or a close friend who accompanied them there.
 

How often have we as disabled activists attended events organised for us and then much to our chagrin afterwards, find out the target group, that is, the handicapped not there?
 

So clearly credit must be duly given to the MPDA organisers for going all out to ensure that persons with Parkinson's and their loved ones turned up.
 

Wheelchairs and walking aids, as we know, are not the easiest things to carry around – not when we live in a society which had totally forgotten about the handicapped in our infrastructure.
But thank God that it did not stop the MPDA from doing their best to bring in as many persons with Parkinson's as they could.
 

Those that came were in various stages of the disease.
 

While most of them who were invited were able to walk, some others felt more comfortable to bring along their wheelchairs and walking canes. Because I myself use a wheelchair, I can appreciate how having a loved one around would have been a great relief for the latter.
 

This, in case we suddenly encountered a step in a building which our wheelchairs can't negotiate. 

 

Or what if we had a sudden attack of symptoms that required medication there and then?
 

Our close friend or loved one would know exactly what to do to help us.
 

I wish to point out that not all NGOs for the disabled bother to go through such details when things are organised for us. They just expect us to turn up without bothering about how we are to get there or checking if the bathrooms are disabled-friendly.
 

I have been told once or twice quite flat in the face to wear an adult diaper and "do your business in it if you have to."
 

Speaking of disabled-friendly restrooms, the MPDA scored top marks because it was available right next to the hall. MBPJ also deserves credit here for renovating their toilets to provide the facilities. 

 

Previously it had not been available.
 

The majority of people with Parkinson's were in their 60s and 70s while others in their fifties. The younger group were diagnosed with the condition as early as in their 40s.
 

Needless to say, the organisers didn't forget to invite the important "others" for the event. These include health professionals and members of the public who were interested in the topic.
 

Heads of other Parkinson's NGOs also turned up. They included one from Terengganu and also Sibu, Sarawak.
 

The main highlight was a talk on exercise and brain change.
It was presented by Dr Claire McLean, an international expert from an organisation called Parkinson Wellness Recovery, USA.
 

She left her audience totally captivated during her three-hour talk where she presented useful and much-needed tips for persons with Parkinson's on how exercise can be used as a treatment for motor, cognitive and emotional symptoms of Parkinson's disease.
 

Dr McLean illustrated how exercise can be used as a first line of defence against Parkinson's based on research evidence.
Many, if not most, persons with Parkinson's not only already know about the importance of exercise to their well-being but are already engaging in it.
 

However, now having personally listened to a top expert share new and supportive facts about its benefits will no doubt motivate them to work harder in their own exercise regimes and never give up.
During the second part of her talk, Dr McLean went further to illustrate specific exercises which persons with Parkinsons can and should perform in order to bring about necessary brain change.
Some of the exercises were so practical that they can do it while remaining seated or standing up.
 

A quick note of improvement here on wheelchair parking: Instead of the only one disabled parking available at MBPJ's community hall (which is nearer to the library than the actual hall, the council should add at least another one or two slots to cater for more handicapped people).
 

In conclusion, bravo again to MPDA for all the trouble and pain you took to ensure that your event was as comfortable and friendly to your members with Parkinson's disease and others.
I think that there is a lot that other NGOs can learn from your wonderful example. – January 25, 2016.
* 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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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.

- See more at: http://www.themalaysianinsider.com/opinion/anthony-sb-thanasayan/article/creating-history-with-the-penang-parkinsons-disease-association#sthash.nwzjvJDx.dpuf