Awareness makes a big difference

It is never easy when one is suddenly struck with a disability.

Especially if you have an incurable one like Parkinson's disease, where the condition worsens over time.

The good news, however, is that it is highly treatable.

What is important is to have a proper diagnosis of the condition from an expert.

For Persons with Parkinson's (PwP) – a condition of the nervous system which causes the muscles to become stiff and the body to shake – it's vital to always stay on top of the disease.

That was exactly what about a dozen PwP's and their caregivers set out to do about a month ago.

Around five PwP's, accompanied by a caregiver each, took a trip to Kuala Terengganu on May 30 to attend a public forum on the disease.

It turned out to be a thumping success.     

First of all, all of them were above the age of 60 and on medication.

They were naturally worried at first if they would make it through the gruelling journey that was before them.

It would take about eight hours in all just to get there. Not to mention, making brief stops along the way to stretch their arms and legs and to rest and refresh themselves.

Amazingly, they made it to their destination and back to their homes again the next day without any problems.

"It was a great confidence booster for our group," said Sara Lew, president of the 21-year old Malaysian Parkinson's Disease Association (MPDA) in Kuala Lumpur.

Lew led the group to the Terengganu forum after the MPDA received an invitation.

"Our members said that the trip made them feel so good about themselves. So much so, it made them forget that they were Parkinson's patients for a while," laughed Lew and went on to point out that getting out of the house and their routine once in a while does wonders for PwP's psyche.

The Parkinson's half day public forum was held on a Saturday at the Mydin Gong Badak Hall in Kuala Terengganu.

Because it was in a shopping centre, the turnout was good.

Around 200 persons comprising weekend shoppers, as well as medical students, nurses and volunteers made the event visible to everyone.

PwP's, however, only made up a small number in the crowd.

About 20 of them were present, some in wheelchairs and others holding on to walking aids and assisted by their caregivers.

But their numbers really did not disappoint at the end of the day as it was a good start considering that it was a first time occasion.

The day was marked with various speeches and talks. The MPDA gave a talk about the role of caregivers as the "unsung heroes."

The audiences were told of their virtually indispensible role as caregivers for PwP's.

The main organiser of the event was the Parkinson Rehabilitation Association of Kuala Terengganu (PRAKT).

The four-year old organisation was founded by its president Philip Lee, 57, who hails from the area.

Lee set up PRAKT after he got Parkinson's himself.

For him, the initial experience of having the disease was hell on earth as he practically couldn't find out anything about the condition then.

By setting out his organisation, he told me that at least the locals from his hometown can now turn to his society for much needed information and support on Parkinson's.

Aside from the MPDA, support for Philip's event also came from the Neurology Department of Hospital Sultanah Nur Zahirah and the Department of Health of Malaysia.

The latter conducted free medical tests that was a hit with the participants and shoppers alike.

The PwP's who turned up were delighted to know from the representative of the Ministry of Women, Family and Community Development – who was present – that they could register themselves with Welfare Department for support.

To me, the part that made a huge impact in the end were for the first-timers who didn't know what Parkinson's disease was. It was also very helpful for those who discovered that they had the disease only recently.

This was confirmed by the feedback that Lee received after the event.

Those who were initially curious about what Parkinson's was about went away that afternoon with having a better idea of the condition.

Not only that, but they were also educated about why it was important to have their symptoms suspicions checked out with a specialist as early as possible.

Lee told me that several persons who turned up for their normal shopping and who stumbled upon the event, were shocked to find out that some of the symptoms that were highlighted in the forum were already what they were experiencing.

The forum speakers convinced them through their talks that they should have their symptoms investigated as soon as possible instead of ignoring them, thinking that it was a "normal ageing problem".

The lively chatter during lunchtime was another positive encounter as PwP's met others for the first time and enthusiastically exchanged notes with each other on how they were coping with their conditions.

The experience was so meaningful that day as one could tell by the smiles on the faces of PwP's and their caregivers. And the fact that many stayed on long after the event had ended, proved it. 

For more information on Parkinson's disease in Kuala Terengganu, contact 016-980 3838 or email [email protected]. – June 29, 2015.

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