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[back] Living with Parkinson's Disease Anthony Thanasaya (The Star) - 25 September 2008

WHEEL POWER TheStar Newspaper: Living with Parkinson's Disease

There is hope for those with Parkinson's Disease and their caregivers.

WHAT would you do if someone you loved dearly started acting strangely for no apparent reason? And that person refuses to tell you his problem?

Then, one day you suddenly discover the truth. But by then, it's already too late. You can only stand back and watch as your whole world collapses in front of you. And then, the real nightmare unfolds.

What I've just described is a common scenario experienced by those with Parkinson's disease (PD). This is a condition linked to the nervous system. As it progresses over time, the disease causes the muscles to become weak and the limbs to shake.

It's never easy for the caregivers either. They could be the husbands, wives, children or even parents of the sufferer.

Last week, I chatted with a wonderful 60-year-old lady. Although we were speaking to each other for the first time, it didn't take long for her to open up to me.

She shared with me some of her personal struggles as a caregiver to her loving husband who has PD.

M lived abroad with her husband (now age 74) for nearly three decades before they came back to Malaysia in the early 1990s. He was diagnosed with PD about three years later. For several years, he never told her or any of his three children, who are now grown up and have successful careers.

He managed to hide it at first because the symptoms were mild. Initially, he had slight tremors on his right hand. However, the situation became more pronounced over time. His movements gradually be-came more laborious and he lost complete interest in golf, his favourite sport.

He grew restless and was not able to sleep at the night. He even had hallucinations about robbers breaking into the house.

That was when M and the kids knew that something was terribly wrong with their father.

"Looking back, I think the revelation of having contracted PD was an extremely bitter pill for my husband to swallow " especially since he was a very independent man for most of his life," M explains.

"I also think he didn't want us to worry," she adds; pointing out that her husband had spent most of his time sleeping.

This was partly due to the effects of his medication and probably to take his mind off his problem.

M and her children eventually concluded that he was suffering from PD from the many articles about the condition in the newspapers.

"When we confronted him about it, he finally admitted to us that he had been seeing a neurologist to help him with his condition," says M.

From then on, the family did everything they could to show their support for him.

Sometimes, they had to do unpleasant things to keep him safe.

"We used to hide the car keys from him because the doctors warned us about him driving," M explains.

But on the positive side, M (and the children) today do everything they can to give him a normal life.

This includes going out for frequent walks, dining out and attending as many social functions as possible, such weddings and get-togethers.

They also go to the Parkinson's Club" a special centre in Kuala Lumpur for people with the disease. People with PD go there to meet and interact with others who have the same condition.

It is also a splendid place for caregivers to meet other caregivers.

M says the sessions help her husband to realise that he is not alone in his struggle, which is very important. This helps him to take his focus off his own suffering for a while and consider another person's plight. The visits have also helped M as well. She also gets to meet many other caregivers who share many of the experiences she goes through.

What is her Raya wish for next week?

"I wish people will be more accepting of others with their many differences and special needs," she says.

"Once someone remarked that I should NOT go out with my husband but instead, stay at home because of 'his sickness'.

"My reply to him was simply that I do not see things the way he does. Some people can't help it if their saliva drips from their mouth, or if they walk with a slant. They are all still normal, just like all of us.

"We should all encourage such people to feel welcome, and always come forward to their aid," concludes M.

For more information about Parkinson's disease, contact the Malaysian Parkinson Disease Association (03-7980 6685 / mpda1@streamyx.com / www.mpda.org.my)