Thursday, 19 February 2015

Joining A Support Group To Stay On Top

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Parkinson’s Disease Need Not Be Drag -Anthony Thanasayan

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Anthony-ThanasayanCheryl Yeong, who hails from Damansara Kim in Petaling Jaya, Selangor, has always been a happy-go-lucky person.
The 61-year-old, whom I had the pleasure to catch up with last week in order to write this article, made it very clear to me that despite what had happened to her, she still has a very positive view of life.

Cheryl has Parkinson's disease.

This is a disease of the nervous system which causes the muscles to become stiff and the body to shake. The condition gradually worsens over time.

Though there is currently no cure, it is highly treatable. There are medications to slow down the negative effects of Parkinson's and improve the quality of life for people with the condition.
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Cheryl is happily married and has four children.

She had no idea that her body was being attacked by a sinister disease until she noticed strange happenings in her normal routine.

One of them was in her walk. Trips to the nearby shops on foot began to take longer and longer each time.

"It used to take only ten minutes to get to the grocer's, but then it started getting more strenuous and seemed like forever for me to get there and back," Cheryl explained.    

"It was my sister-in-law who suddenly asked me why I was 'walking funny', and this was later echoed by my son," added Cheryl.

By this time, everyone had noticed a particular drag in Cheryl's left foot. Furthermore, her unsteady walk made it seem like she was going to lose her balance and fall anytime.

That was in 2005.

Surprisingly, however, no one - including Cheryl - did anything about it - everyone thought that it would go away.

It was after Cheryl's visit to a friend who had a stroke that made her finally seek medical help. She suspected that she might be experiencing the early stages of a stroke attack.
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Though the doctor in a government hospital suspected Cheryl had Parkinson's the moment she entered her clinic, it took several tests and months later before she ended up seeing a neurologist who then broke the bad news to her.

"But because I hadn't a clue about what Parkinson's disease was at
 that time and didn't know anyone who was personally suffering from it, I merely treated it the same way I did when I had a fever.  

"I wanted to get over it as fast as I could."

It was the Internet in the end that was a life saver for Cheryl.

Browsing through the search pages gave her a true and grim picture of what Parkinson's was, what it could and would do to her - and how to stay on top of the situation.

By then, Cheryl was already on the right medication to treat Parkinson's, given by the hospital, and her husband and children were her caregivers.

However, Cheryl pointed out that she wished her doctors and healthcare workers could have been more proactive about how to get on with life after Parkinson's.

"I was never told about the existence of the Malaysian Parkinson's Disease Association (MPDA), for instance, which is a national support group for people like me and our caregivers."

Cheryl and her family got to know about the organisation when the latter held a hot air balloon event at a football field in PJ, in conjunction with World Parkinson's Day in 2008.

"My hubby took me there, where Persons with Parkinson's (PwP) got to enjoy free rides up in the sky in a hot air balloon," recalled Cheryl with a big grin on her face.

"The first patient I saw was in a wheelchair, staring at me with the typical expressionless face that PwP's tend to have.
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"Then it suddenly hit me that I could be like that, ten years down the road. It was important for me to join the group in order to stay on top of the disease. And so I signed up there and then - and have no regrets today for doing so."

Cheryl says that meeting others with Parkinson's disease and finding out about their own stories of how they are coping with the disease has helped her husband and her tremendously in dealing with their battle with Parkinson's.

The volunteers who help at the centre are also an inspiration, some of whom have family members with Parkinson's who are still living or who have passed on.

"Whether it's struggling with my body which doesn't listen to me to do what I tell it to, or accidentally falling down like timber in the forest, I'm learning to do things at a slower pace.

"I'm out every morning in the park near my house to practise physical exercises with other residents of my community without Parkinson's.

"I am also actively working at the MPDA. One of my responsibilities is visiting patients in nursing homes who have the condition."

Cheryl, her husband and her four children would like to wish all readers of Rakyat Times who are celebrating Chinese New Year a most prosperous and Happy New Year!



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Thursday, 5 February 2015

Serene's Struggle with Epilepsy


Taking Epilepsy Seriously -Anthony Thanasayan

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Anthony-ThanasayanANYONE who knows Serene Low cannot help but admire her.

And there are great reasons for this.

The fifty-something, happily married, lives in Bangsar, Kuala Lumpur with her husband and son who is almost in his thirties.

She is the world's best mum and wife to them.

However, there is something even more special about Serene.
She is one of the best-known advocates of epilepsy awareness in the country.

In fact, that's not all.

Serene herself is also a person with epilepsy (PwE).

And this is probably why many who don't know about the disease - and wish to understand it more - come to her for advice and guidance.

It is also why she is so passionate about raising awareness of the condition in society.
Epilepsy is a neurological disorder which causes seizures.
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Medical experts say epileptic seizures are the result of over-activity of the brain cells, which in turn produces a surge of electricity.

These seizures can be triggered by brain damage from injuries sustained at birth. They can happen through head injuries, stroke, brain tumours - and even because of alcoholism.

However, in many instances, the cause of epileptic seizures remains a mystery.

Serene is the sixth child in a family of eight.

With so many children to look after, her family didn't zero in immediately on a fever the young Serene had developed until it was too late.

It was when her parents saw her convulsions that they realised something was terribly wrong. They rushed Serene to a hospital.
A few days later, the doctors confirmed that she had epilepsy.

From then on, Serene experienced convulsions each time she had a fever.

Fortunately, the epileptic attacks ceased once she started attending school. It did not occur for years thereafter.

But the nightmare returned after Serene turned 18.

The first attack, when she was 18, could not have occurred in a more dangerous place and situation!

"I was swimming out at sea when everything suddenly went black," Serene recalled.

It happened during a family outing with some friends.

"Luckily, my brother's friend spotted me from a distance," she added. "My head was popping in and out of the water.

"By the time he rushed and swam out towards me, my face was already bluish purple."    

Serene was rushed to the nearest clinic and given resuscitation.
It was after that incident that everyone got very serious about her condition - including Serene herself.

She started seeing a neurologist. He wasted no time in putting her onto the right kind of medication to control her seizures.

The drugs didn't totally prevent the epileptic attacks. But they did help greatly to reduce their frequency.

Serene has, to date, suffered more than a hundred attacks. She says she has lost count of the exact number of seizures she experienced.
"Those early days were the most difficult for me," she said.

"It's not that I was never given any medication then. I threw away my pills and never told my parents about it.

"I was just very confused and had become intensely bitter about my situation.                

"I just couldn't accept what I was going through when everyone else, especially my friends, were leading happy lives. I felt that my very world was crumbling before me."

Serene recollected that one of the hardest things about being an epileptic was having sudden attacks while being with friends and colleagues.

The episodes were rather scary - especially when people didn't know what to do with a person having an epileptic attack.

Some of her friends would place a spoon, a T-shirt or even a towel in her mouth in an attempt to prevent her from accidentally biting her tongue during the seizures.

"But they didn't know that it was a dangerous thing to do as it could block my air passageway and choke me.

"The best thing to do is to leave the person alone and allow the 
seizure to take its course. In addition, it is good to put away any object that might obstruct or injure the affected person during the epileptic attack.

"Also, turning a person who is having a seizure onto his side will help ensure that his air passageway is clear - instead of his lying on his back, where his tongue can roll backwards and choke him."

The first-ever International Epilepsy Day will be observed next Monday.

Serene is a member of the Malaysian Society of Epilepsy. She headed the first epilepsy support group in the year 2000 and served in that capacity for five years.

She enjoys writing articles, poems and quotes. In one of her articles, she wrote: "Epilepsy does not make me different from others; rather, it is how differently others choose to see me."

Serene can be contacted on her Facebook page: https://www.facebook.com/serene.low.104?fref=ts
Serene also tweets under "@serenelow"
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