SAY the
word, "Parkinson’s disease", and it is likely to send a shiver down most
people’s spines.
But NOT for a group of people with
the condition – who together with their caregivers – braved a three-day visit up
to Penang from Kuala Lumpur recently.
The special adventurers were from the
Malaysian Parkinson’s Disease Association (MPDA) based in KL, a national
organisation that has been around for nearly 20 years to help Persons’s with
Parkinson’s (PwP).
They comprised of the following:
Four PwP, five of their personal caregivers, and four volunteers who were also
members of MPDA.
Their mission?
To help set up a new chapter in the northern
island so that people with the disease there will also be able to receive the
right kind of help and support.
The four PwP who made the historic
trip were one man and three women.
They were aged between 50 and 70
years. All of them were diagnosed with the disease for at least 10 years.
Although they did not require
wheelchairs for mobility, they had to rely on some physical support and care
for their slow movements and balance.
“We took three cars. Our journey
started at 10.30am and we only reached our destination at about 5pm,” said Sara
Lew, president of MPDA.
“This was all intentional. Because
our passengers were PwP, we made sure not to rush anyone but to make the trip
as leisurely as possible,” she explained.
“We also ensured to embark a day
before our event and return a day after it to make it a completely comfortable
and stress-free trip for our passengers with disabilities.”
The special travellers also made
frequent stops during their journey. This was a chance for them to get out of
the car during regular intervals to stretch their hands and legs and use the washrooms.
“Because our group was not at the
advanced stage of the disease, they were able to walk on their own and use the
regular toilet by themselves. They only needed slight support of someone
walking next to them in case they lost their footing or was accidentally bumped
into by others," Sara pointed out.
“But what was more important is how
therapeutic the entire experience was for each of them,” said Sara.
“They were able to forget about
their condition for a while and their home environment and instead be able to
concentrate on and enjoy more positive things like the people, scenery and
excitement all around them.”
The MPDA president pointed out that
this was a very important part of the treatment process for PwP – to help them
stay on top of their conditions.
“The mouth-watering delicacies from
the variety of street food in their stopovers in Perak and Penang brought
a thousand smiles in their faces.
"And so did the brief visits to the park.”
Sara pointed out that this is a chief reason
why such places should be made disabled-friendly so that people in wheelchairs
can also participate in as part of their rehabilitation process.
The exercise also gave an
opportunity for everyone to bond with each other and overcome obstacles
together.
The half day forum proved to be
highly informative not just for person affected by the disease but for those
who attended out of curiosity.
About 150 people turned out at the Complex
Masyarakat Penyayang in Penang where the event was held.
There was no shortage of experts on
the topic who included a neurologist, psychiatrist and neurosurgeon.
Participants got to hear about Parkinson
disease and its crippling effects on its victims to how it also affects the
mind and a special surgery called deep brain stimulation in Parkinson disease.
They also heard about how it was
named after a doctor called James Parkinson as far back as 1817.
Age is the most consistent risk
factor. In the brain, cells that produce a chemical called dopamine dies off.
With the lack of dopamine in the
brain, patients develop slowness, stiffness, shaking and difficulty in walking.
As the disease worsens, cognitive
and behavioral problems may arise.
It used to be thought as a motor
problem, but experts now know that Parkinson disease is a motor and non-motor
problem.
For example, sleep problems such as
difficulty in sleeping (insomnia), fragmentation of sleep, acting out dreams
(REM sleep behavior disorder), depression, anxiety, constipation and not being
able to smell are non-motor features of Parkinson disease.
At this point of time, the cause of
Parkinson disease is unknown though many factors could increase the chance of
one getting Parkinson disease such as exposure to insecticides or pesticides.
Whilst Parkinson’s disease is still
not curable, the good news is it can be treated with a number of medications
that would help the symptoms of slowing, stiffness, shaking and walking problems
to help PwP live as normally as possible.
For more information on Parkinson’s
and how to join the Penang support group, please contact the MPDA (Mr Looi 03
79806685/017 8871859)
Note: Eli Pollard, CEO of World
Parkinson’s Coalition in New York will be in Malaysia from April 10 – 13 this month. World Parkinson’s Day is on April 11.
Ms Pollard is in town to make a site
visit as Malaysia has been shortlisted to host the World Parkinson’s Congress
in 2016. This year’s event – the third occasion - is being held in Montreal,
Canada from October 1 – 4. Malaysia will be represented by the MPDA.
The End.
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