LIVING WITH PARKINSON'S DISEASE

Ravichandran D.J. Paul


KUALA LUMPUR, April 8 (Bernama) -- The World Parkinson's Day 2009
commemorated annually on April 11 will remind Malaysians of a disease that they
least know and understand.

Parkinson's Disease (PD), is a degenerative disease of the brain with the
common tell-tale signs being trembling hands and legs, stiff body, an
expressionless face, slurred speech, and often lack of synchronized movement of
the limbs.

These symptoms can easily be mistaken for other medical conditions or as
typical signs of the aging process. Those afflicted with PD will tell you how
obscure the symptoms can be.

About 16 years ago Niamat Ali Raunkee, 68, a retired teacher and the former
treasurer of the Football Association of Selangor, first noted that he had to
drag along his reluctant leg when he went walking with a friend and thought the
problem was confined to the leg.

About 10 years ago, Steven Tung, 54, while jogging noted that one of his
arms refused to move in sync with the rest of his limbs but chose to ignore as
he felt he was in perfect health.

Both were diagnosed with PD and they are among the estimated 15,000-20,000
Malaysians suffering from various stages of PD.

Dr Chew Nee Kong, a neurologist and consultant physician, one of the handful
of local experts on PD lamented that the poor awareness on the condition among
Malaysians not only contributed to late or under diagnosis but also a miserable
life for those suffering from PD and their care givers.

GETTING TO KNOW PARKINSON

"It is one of the least known disease in Malaysia and the common perception
that it only afflicts the elderly population is a misnomer and counter
productive.

"The truth is there are many young PD patients and the youngest in Malaysia
that I have come across is a male aged 23," says Dr Chew.

Age, race and gender seems to be no barrier for PD and between 5-10 percent
of the patients show symptoms before the age of 40 (Young-Onset Parkinson's
Disease). Among the elderly population, 1.6 percent of those in the above 60 age
group are considered vulnerable.

Dr Chew notes that on average the diagnosis is made two years after the
onset of the symptoms which are often subtle, with the onset being very slow and
often mistaken with the ageing process.

Though it is a highly visible disease, often in 30 percent of the patients
it starts with more subtle symptoms like slurred speech, expressionless face and
slowing movement of the body that can be easily mistaken with other medical
conditions.

PD is basically a degenerative disease of the brain that disrupts the
formation and function of a biochemical substance in the brain called Dopamine.

Though the genesis of PD remains unclear, genetic links has been observed in
at least 2 percent of the cases. Secondary causes like head injuries, drug
abuse, toxicity and others have not been ruled out.


THE IMPLICATIONS

While the disease itself is neither preventable or curable, the advances in
medical research has produced potent drugs to alleviate the symptoms and help
patients to lead a productive life.

Dr Chew points out that a single treatment using Pramipexole at the early
stage of the illness improves movement and delays the onset of involuntary body
movement. But as the disease progresses Levodopa is recommended but its side
effects are often unbearable.

Nevertheless, with the passage of time the effects of these drugs begin to
wear out fast and by 10-15 years these medications no longer work and a brain
surgery to implant metal electrodes to provide deep brain simulation is
recommended.

But there is a serious impediment, the surgery costs more than RM80,000 and
virtually no party wants to come forward to lend a helping hand. In Malaysia
since 2001, only 25 patients have undergone this surgery.

Dr Chew states that much of the public apathy on those suffering from PD is
due to the misunderstood fact that it only affects the elderly population who
have passed the productive years and therefore there is no point in wasting the
financial resources on them.

LIVING WITH PD

As the symptoms are highly visible, added with general public ignorance on
the disease, there seems to be social stigma on those suffering from PD.

PD patients are often perceived as stupid as they are slow to respond, seen
rude as their face is expressionless and perceived funny as they can't control
the movement of their body and limbs.

"When I go out people give me stares and even some have laughed at my
trembling hands. Once I went to pay some bills and sat down waiting for my turn.
When my turn came I just couldn't get up and when I asked for help from those
beside me they just ignored", laments Niamat Ali on the indifference of the
society against those suffering from PD.

And life is not any easier for the care givers of those suffering from PD.
The hardships underwent by Niamat and Tung's family stand testimony to this
fact.

Nevertheless for Dr Chew, with breakthroughs in medical science and
availability of newer and effective medications PD patients need not despair.

"They should seek treatment and get on with life. I in fact encourage my PD
patients to drive", says Dr Chew.

Dr Chew hopes that there will be greater awareness on PD and hopes the World
Parkinson's Day 2009 will shed some light on the disease.

This year's celebration at Crystal Crown hotel in Petaling Jaya at 2 pm,
Saturday, will see a public forum and the Negeri Sembilan Parkinson Society be
handing out aid for brain surgery from the Lloyd Tan Trust Fund to the inaugural
recipient.

-- BERNAMA