THEY arrived in impressive numbers: people in wheelchairs, wheeled in by their caregivers, others with walking difficulties aided by walking sticks or physical support from their families.
This despite of the fact that
they are forced to live with an insidious disease called “Parkinson’s” every
day of their lives.
Just the very mention of the
word itself is enough to send shivers down the spine of most people.
However, they were not there to
express fear nor defeat.
Rather their coming together was
to declare victory in the form of a celebration over a disease that haunts them
day and night with an eternal hope that a cure will be found one day.
I was thrilled to be among more
than 200-strong people with Parkinson’s (PwP) disease, their caregivers and
supporters last Sunday when the Petaling
Jaya City Council (MBPJ) celebrated World Parkinson’s Day.
The half-day event which was
held at PJ’s Civic Centre was also jointly organised by the national Malaysian
Parkinson’s Disease Association (MPDA).
World Parkinson’s Day which is
commemorated annually on April 11 was held earlier this year by MBPJ.
This is not only the third time that
the local council was holding such an event but MBPJ is believed to be the first
and only local government authority to offer support for Parkinson’s awareness
in the nation.
This fact was mentioned and
acknowledged in the opening remarks of MPDA’s president Sara Lew.
She called on more government
agencies to follow MBPJ’s “fine example of caring for its residents”.
Lew represents PwP in MBPJ’s
technical committee on disability – a fortnightly meeting that offers practical
advice to developers and architects on how to design user-friendly features for
disabled and elderly people.
“It is estimated that 1 – in -
500 Malaysians have Parkinson’s disease (PD),” she said in her “wake up”
speech.
“Given our total current
population, this brings us to 60,000 Malaysians living with PD with worldwide statistics
at 10 million people.
“With our ever increasing ageing
population, the numbers of PwP is only going to get bigger than smaller,” Lew
warned.
PD is a disease that affects the
nervous system and causes people’s muscles to become weak and their arms to
shake. It progresses over time.
Lew whose late father had
suffered from PD, and his sister now has the condition, pointed out that it
isn’t only the affected person who suffers from the effects of Parkinson’s.
“PD’s effects on its victims in
the long term will lead to huge social and economic costs for the community and
the nation as a whole and this is why it is imperative for the relevant authorities
to address the issue,” she said.
Meanwhile, Lew also made it a
point to thank the Government for finally recognising PD as a disability last
year.
The move had allowed PwP to
enjoy social and medical benefits as other disabled persons.
In his address, Guest of Honour Dr.
Xavier Jayakumar, Selangor State Exco Member and Permanent Chairman of Health,
Plantation Workers, Poverty and Caring Government stressed that more red tape
needs to be removed by the authorities when helping PwP and other disabled
persons.
“Everyone needs to also
recognise the indispensible role that caregivers play in caring for disabled
people,” he said, and added that Malaysia is rich enough to ensure that people
who need special help get the assistance that they need.
The executive state councillor
then pledged a sum of RM10,000 to the MPDA to help them in their cause.
Apart from the speeches, the
day’s events were marked with various activities.
There was a sing along song
presentation by the members of MPDA.
In addition to having a great
time with music, the weekly exercise at the Parkinson’s centre in Kuala Lumpur was
also to strengthen their vocal cords affected by the disease.
An art therapy corner was
available for PwP to discover their artistic talents.
Some of the artwork put on
display after the exercise – even by first timers – was truly remarkable and
inspiring.
The major highlight of the day,
however, was the public signing of the Global Parkinson’s Pledge to combat the
disease.
It began at the 2nd World
Parkinson Congress in Glasgow, Scotland two years ago.
The purpose of the effort is to
build a global Parkinson’s movement for change in making PD a priority health,
social and economic concern worldwide ahead of the next 3rd World
Parkinson’s Congress in Montreal, Canada in October of next year.
The best way to sum up the
entire event is what one PwP told me before he left.
He was no longer using a walking
stick to get about but a wheelchair and aided by his family members.
But he still sported his bright
and infectious big smile on his face.
When I enquired about his
health, he answered: “I’m still very much alive. See you again next year!”
For more information on
Parkinson’s, please call MPDA at 03-79806685 or visit www.mpda.org.my.
THE END
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