Joining A Support Group To Stay On Top

Parkinson’s Disease Need Not Be Drag -Anthony Thanasayan

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Created on Thursday, 19 February 2015 07:00

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Written by Anthony Thanasayan

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Cheryl 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.

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.

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.

 

"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!

Serene's Struggle with Epilepsy

Taking Epilepsy Seriously -Anthony Thanasayan

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Created on Thursday, 05 February 2015 07:00

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Written by Anthony Thanasayan

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ANYONE 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.

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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Understanding Asperger Syndrome

An Insight into AS for Rakyat Times Readers -Anthony Thanasayan

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Created on Thursday, 22 January 2015 07:00

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Written by Anthony Thanasayan

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Experts say that there are more than seven billion people living in our world today.

Among them are human beings from all walks of life. They include the young and the old, the rich and the poor, the sick and the healthy, persons with disabilities or disorders and those without any.

Recently, I received an email from a boy living in Selangor. He is 11 years old.

He wanted to share with the readers of Rakyat Times what it feels like to go through life living with Asperger Syndrome or AS.

AS is a type of autism where someone has significant difficulties in the areas of social interaction, communication and imagination.

I have decided to keep his identity anonymous. This is because of some personal things he mentioned in his email.

I shall call him 'TK'. His letter was written with the help of his mother and it has been edited for clarity.

This is what he wrote:

"We, as children, are born different in terms of our shapes and sizes, behaviour and feelings, fortunes and fates, and in our strengths and weaknesses.

"It is sad when people look down or discriminate against a group of people called 'special children'." 

TK went on to point out that "it seems as if some sectors of our society are just not ready to accept people like us, causing us to hide ourselves from the public eye.

"When I was in kindergarten, I was very lucky that the preschool believed in something called, 'Inclusive Education'.

"What this means is that it was a school which believed strongly in mixing 'normal children' with 'special kids'.

"In other words, thanks to my family, I was already introduced to kids like me - as well as to others who weren't - at the early age of six."

TK recalled that, at first, it was a somewhat scary, even awkward experience for him. However, his mother encouraged him on.

"Mum told me that each and every person is not only different - but unique," TK explained.

"We should accept and respect each and every individual as they are," Mum emphasised.

"Mum's main concern was to find the right kindergarten that would help me adjust, to prepare me for regular school."

And "adjust" was exactly what TK learnt to do.

He not only learnt how to get along and play with the other kids but also to care for others when they accidentally hurt themselves and cried.

"Not only did I have great fun in kindergarten, but I also learnt the precious lesson to never look down on anybody or treat him or her as a 'lesser person.'

"Whether we are disabled or not, each one of us has strengths and weaknesses."

After kindergarten, the first two years spent in primary school were fortunately pretty much the same for TK.

However, things suddenly changed when he was nine years old and in Standard Three.

His teacher, for some reason, didn't seem to like him and his disability. She not only labelled him  a 'chatterbox' but had no qualms about calling him unkind names in front of the whole class and other teachers.

She even went to the extent of telling TK's classmates to boycott him, warning anyone who befriended him that they would not be treated well by her.

"As a result, I was avoided, teased or bullied. It became too much for me to bear and I ended up being involved in fist fights with the other kids.

"Things only got worse. She never picked me to represent the school in competitions even though I was more than qualified to enter.

"Her constant victimisation of me only made me even more upset, lonely and depressed. How I wished I could go back to my wonderful kindergarten days when we, as special kids, were understood and accepted unconditionally!

"Once or twice, I even thought of suicide but I thank God for my family and friends who love and accept me for who I am.

"They always stand by me, no matter what. And I thank God for them because God is love and He is my protector at all times," concluded TK.

Note: The letter by TK raises some serious questions about how well-trained and aware so-called "special education teachers" in our schools are, whose job is to reach out to special kids, including children with AS.

(AS, also known as Asperger disorder (AD) or simply Asperger's, is sometimes referred to as a 'hidden disability'. It is not usually visible when you first meet someone with AS.

People with AS do not have a learning disability. Most people with the condition have gone through mainstream school. Some may even pursue higher education and find employment.)

Tips for caring for the elderly

How To Care For The Elderly in 2015 -Anthony Thanasayan

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Created on Thursday, 15 January 2015 07:00

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Written by Anthony Thanasayan

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EVEN THOUGH we are halfway through a brand new month of another spanking new year, it is never too late to make New Year resolutions!
If you have already made up a list, not to worry. You can just add in other resolutions.

Here are some suggestions with regards to elderly and disabled persons who are worthy of consideration for positive and quality living.
These ideas have been sourced from a group of senior persons whom I spoke with last week, as I was preparing this article.
1) For elderly and disabled persons:

• Change Your Focus: Make a pact with your peers not to mention aches and pains anymore. Sure, they are important to note, especially when new ones appear. Your doctor needs to know about them in order to put you on the right medication and treatment on how best to deal with them.

However, other than that, they don't have to be the starter or subject in all of your conversations when you meet old and new friends. It's time to move away from things you have little or no control over - and on to more positive things.
Start talking about the new baby in the family or your latest gardening exploits instead. What is the latest book that you are reading, or perhaps a movie you watched or are planning to go and see with the family?
Even though you may not be able to stop what's happening to your body, you can be the author of how you wish your life to be run from where you are at the moment.
2) When helping caregivers:

• Caregivers Need A Break Badly: As a volunteer, you can offer to relieve a carer who has to look after an elderly or disabled member 24/7.

This can be done by sitting in for them for a couple of hours or more, whilst they take time off to catch up on other chores that need attending to. Or, it can be time-off for the caregivers - to go and watch a movie or attend a fun event in order to rejuvenate themselves.
This can be done once a week or even once a month, depending on your availability. This relief programme can and should be part of a neighbourhood activity or one coordinated by the local council.
Such volunteerism would be especially great for social groups of religious organisations to participate in.
And when you do, please don't only make it a prayer or preachy session.
Make it a truly get-to-know programme with the bedridden or wheelchair-bound person by finding out more of his or her wants and wishes. Be sure to share with him or her the happenings outside the home and even around the world.
This would greatly help to distract the person for a while from whatever problems he or she is going through. The key is to keep the conversations positive at all times.
Offer to help get the groceries and other needful items for the caregivers when you are out shopping yourself. This makes a big difference to them.
They may be shy at first and refuse your kind gesture. However, once you have their confidence, you will soon realise how such help goes a long way in their lives.  
3) When visiting the disabled or elderly:

• Music Enriches The Soul: Bring along your CD collection - or buy a good album - for those interested in music and share it with them. Inspirational talks make great choices.
• Invite Them For An Outing With You: Outings can be a neighbourhood walk or a visit to a nearby park. But be sure to ask the regular caregiver about the necessary do's and don'ts first. Pay attention to detail and NEVER do what's forbidden. Wheelchairs can be a problem, especially with manoeuvrability - so be careful!
• Bringing Over Their Favourite Food: This is a terrific way to make friends. It would be a boon if you can make it yourself. However, pay attention religiously to any allergies, intolerance and other food-related problems they might have. When they say "Not spicy", they mean exactly that.
• Visits Should Be Regular And Ongoing: Placing the elderly in caring homes is not wrong, especially when one doesn't have the time and resources to care for ageing persons. Never let up on the visits - even if it means that family members have to take turns to check on their loved ones. Failure to do so would be tantamount to abandoning them. No matter how much you may spend on providing care for your loved ones, it cannot replace their love for you.    

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Never alone in MD struggle

Not Alone in MD Struggle -Anthony Thanasayan

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Created on Thursday, 08 January 2015 07:00

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Written by Anthony Thanasayan

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Muscular Dystrophy or MD is a serious disease.

A person who has the condition experiences his or her muscles becoming weaker over time, until the ability to walk is no longer possible.

Aquila Dass, 18, has MD.

He was born in Kajang, in the state of Selangor.

He has an older brother and sister in their 30s. They don't have the disease.

Aquila's father, however, had muscular dystrophy. He died approximately six months after Aquila was born.

He was also a wheelchair user.

Aquila grew up pretty much a normal child, until it became obvious that he was different.

Whilst most babies begin to take their first steps within the first year, Aquila, however, stuck to crawling around for the first few years.

It wasn't until he was four years old that he took his first step.

Unlike other toddlers, Aquila had to hold on to objects for dear life.

These included stools and chairs to keep him from falling down and to help him maintain his balance - something he kept on doing as a child growing up.

Aquila had to learn to be very careful while walking. One slight bump into someone (or by someone) and he would end up falling - something he got used to experiencing over the years.

By the time he was 11 years old, Aquila's muscles had got weaker and weaker. It was difficult for him to carry his school bag, either with his hands or even as a backpack on his shoulders.

He had to also start holding on to his classmates and friends in order to remain on his feet.

Three months before his 12th birthday, Aquila's legs finally gave way - leaving him unable to walk, and terribly afraid.

"It was like my best friends (my legs) had deserted me," Aquila told me in a telephone interview last week.

"Being different at home wasn't so bad," he added. "But not being the same as the other kids in school was pretty embarrassing and weird."

Aquila went on to tell me how he was stared at by his schoolmates and treated differently, which he didn't like.

He was also depressed, particularly because he could not take part in athletic sports.

"Just sitting down and watching all the other kids running around and having a good time with each other was no fun at all. I asked God every night to make me like them, that is, to be able to walk again."

Aquila related an incident when he got hurt in school one day, resulting in his having to be put in a plaster cast for a month.

A fight had broken out among some boys outside the classroom. Aquila, who was walking past them, was accidentally pushed into a drain.

He sustained a fracture.

Aquila was helped out of the drain by his teacher and schoolmates and made to rest in the canteen until his brother arrived to take him home.

When his mother returned home after work and heard what had happened, she broke down and cried.

It was then, Aquila told me, that he realised how serious his disability was, and that he was not like the rest of the other children.

And he also knew that it wasn't about to go away very soon.

Things then changed very much for the boy from then on.

After recuperating at home in his cast, things only became harder and harder for Aquila.

Instead of taking pains to make the school disabled-friendly for their handicapped student, the authorities shooed the boy off to another school, one further from his home. They said they could not deal with a disabled child.

But transport became more difficult and complicated for Aquila.

Then, the inevitable occurred.

Aquila began losing interest in his studies and motivation in life.

He became glued to the television all day until he was introduced to a local church near his home.

Aquila said he loves going there because he is treated normally by the members. Instead of being stuck at home, he enjoys taking part in the singing and youth activities of the church.

However, things only really started to change for the positive when Aquila enrolled himself in a centre for disabled persons in Rawang, Selangor.

Called the Independent Living and Training Centre Malaysia (ILTC), it is run by trainers with disabilities who help other handicapped persons with living skills and confidence-building.

Aquila has been living at the ILTC since March last year. He said he has learnt much by living with more senior persons with disabilities.

"I have now learnt some computer skills, typing and email. I have also made some new friends on Facebook, which I didn't have the opportunity to do so before," he said, beaming from ear to ear.

"Part of my responsibility is to help around in the office by answering calls, making appointments and being in charge when our centre's president and secretary - both in wheelchairs - have to attend to outside matters.

"Being here, I've found people who share the same difficulties and pain which I go through, but the difference is that  I am happy to know that I am not alone in my struggles."

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An angel in the waters

An Angel Over The Waters -Anthony Thanasayan

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Created on Thursday, 01 January 2015 07:00

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Written by Anthony Thanasayan

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At the time of writing this, the grim numbers of Malaysians displaced by the floods have risen to a shocking and saddening 250,000.

I can't even begin to imagine what it is like for all the victims caught in such a predicament - more so, for persons with disabilities.

Has help arrived for all of them? Are they still trapped in their homes?

Or have they been successfully - and safely - transported to the temporary shelters? And, are they doing okay there?

Recently, I spoke to wheelchair-bound S Jeyaraj from New Green Park in Rawang, Selangor.

The 36-year-old is no stranger to what it feels like being caught in a flood situation.

"Being born in Taiping, Perak, not far from some of the worst-hit areas, my heart goes out to each and every flood victim and what they have to put up with each day," he said.

Jeyaraj, who became permanently disabled in an industrial accident in Singapore, literally doesn't have to go far to know what rising waters are like.

Flash floods struck his home several times this year.

"The worst was when I was at home alone," said the husband and proud father of a one-year-old boy.

"My wife was staying overnight elsewhere with my kid when a sudden heavy downpour took place in the afternoon," Jeyaraj explained.

He was watching television at the time when he suddenly noticed water seeping in through the entrance of his home. Within a minute or two, water and mud had flooded his entire house.

To stop the water from rising further, Jeyaraj had to think fast. He grabbed some empty adult diaper boxes and made it to his front gate.

He had to place some barriers there in order to stop more water from coming into his home.

Every time a vehicle such as a car or lorry drove past, it would send a gush of water into his house.

"The mud and water made it extremely difficult for me to manoeuvre my wheelchair. I had to use all my strength to push my wheelchair to the front," recalled Jeyaraj, who had spent three months in intensive rehabilitation training in Singapore after his accident.

Jeyaraj succeeded in temporarily blocking the water as rain pounded his home. The water was almost reaching the level of his knee by then while he was in his wheelchair.

Fortunately, the rain stopped within an hour and the water receded.

However, there was a lot of cleaning up to do by then.

Jeyaraj did as much as he could with a mop and pail. He had to go over the affected areas several times.

But it wasn't until his able-bodied wife returned home with their baby that the house could be returned to a spick-and-span condition.

Jeyaraj, however, regrets the fact that his neighbours were of no help to him even though they were aware of his situation.

"One neighbour just stopped and stared without flinching, as I struggled to carry several flowerpots as stands to hold the diaper boxes together," concluded Jeyaraj.

I, too, know what the helpless feeling is like when one is caught in a flash flood situation.

I was right in the heart of Kuala Lumpur some years ago when it happened. I was in my car with my three service canines in the back seat!

I was on my way home to Petaling Jaya in Selangor after a visit to the vet, who gave them their annual vaccination boosters.

And the last thing she hollered out to me was to "make sure not to bathe or get your pets wet for at least two weeks". To do so, during the incubation period, could make them seriously ill.

So there I was, with three big and noticeable canines: a Rottweiler, a German Shepherd and a Golden Retriever, stuck in a sudden and massive traffic jam in the middle of KL.

The cars refused to move. However, the threatening waters from an over-flooded river came speeding towards us.

Whilst some drivers, in desperation, cut across the divider and headed off in the opposite direction, most of the other drivers, without daredevil skills, ran out of their vehicles and into buildings for cover.

But I was stuck there with my wheelchair in the car boot. I thought I was a goner for sure.

When push comes to shove, I can work out something. So I planned to open the doors and let my dogs swim out to safety.

But in a flash, a stranger wearing a white singlet appeared from nowhere.

He miraculously guided me - from outside in the rain and flood waters - to drive my car to the  top of a little bridge which I hadn't noticed was there until then.

It was on higher ground, and it was much safer there.

He didn't say a word to me, only guided me with hand gestures. My guardian angel stood in front of my car until the rain and flood waters started to lessen.

Then, he practically vanished! There was no time for me to say even a "Thank you".

May an angel guide all of us through whatever challenges 2015 may bring with it.