THE PASSING OF A LOVING GRAND MATRIACH

My beloved mother in law, Madam Y L Kwok, has passed away peacefully on 23rd November 2008.

My late mother in law was an instrumental pillar stone in my epileptic life. She knew what epilepsy is about and encouraged me to be relentless in my epilepsy awareness work. She was also my dear partner in a lot of my fund raising work.

She exudes compassion, humility, elegance, beauty, grace and love.

This epilepsy legacy blog is dedicated to my late mother in law in remembrance of her. I will miss her deeply.

As a mark of respect for my mother in law's demise, a period of silence will be observed. There will be no further postings in this blog from today till January 2009.

WHAT IS LENNOX-GASTAUT SYNDROME?

Lennox-Gastaut syndrome is a severe form of epilepsy. Seizures usually begin before 4 years of age. Seizure types, which vary among patients, include tonic (stiffening of the body, upward deviation of the eyes, dilation of the pupils, and altered respiratory patterns), atonic (brief loss of muscle tone and consciousness, causing abrupt falls), atypical absence (staring spells), and myoclonic (sudden muscle jerks). There may be periods of frequent seizures mixed with brief, relatively seizure-free periods.

Most children with Lennox-Gastaut syndrome experience some degree of impaired intellectual functioning or information processing, along with developmental delays, and behavorial disturbances. Lennox-Gastaut syndrome can be caused by brain malformations, perinatal asphyxia, severe head injury, central nervous system infection and inherited degenerative or metabolic conditions. In 30 - 35 percent of cases, no cause can be found.

IS THERE ANY TREATMENT?

Treatment for Lennox-Gastaut syndrome includes anti-epileptic medications such as valporate, lamotrigine, felbamate, or topiramate. There is usually no single antiepileptic medication that will control seizures. Children who improve initially may later show tolerance to a drug or have uncontrollable seizures.

WHAT IS THE PROGNOSIS?

The prognosis for individuals with Lennox-Gastaut syndrome varies. There is no cure for the disorder. Complete recovery, including freedom from seizures and normal development, is very unusual.

WHAT RESEARCH IS BEING DONE?

The NINDS conducts and supports a broad program of basic and clinical research on epilepsy including Lennox-Gastaut syndrome. These studies are aimed at finding the causes of these disorders, improving the diagnosis, and developing new medications and other therapies.

Go to this link to view a list of studies currently seeking patients.

Epilepsy Foundation
8301 Professional Place
Landover, MD 20785-7223
postmaster@efa.org
www.epilepsyfoundation.org

YOUR DIMENSION OF GREATNESS

No one can know the potential,
Of a life that is committed to win;
With courage - the challenge it faces,
To achieve great success in the end!

So, explore the Dimension of Greatness,
And believe that the world CAN be won;
By a mind that is fully committed,
KNOWING the task can be done!

Your world has no place for the skeptic,
No room for the DOUBTER to stand;
To weaken your firm resolution
That you CAN EXCEL in this land!

We must have VISION TO SEE our potential,
And FAITH TO BELIEVE that we can;
Then COURAGE TO ACT with conviction,
To become what GOD MEANT us to be!

So, possess the strength and the courage,
To conquer WHATEVER you choose;
It's the person WHO NEVER GETS STARTED,
That is destined FOREVER to lose!


--- Author Unknown


source : www.motivateus.com

NOVEMBER IS EPILEPSY AWARENESS MONTH

November is here again. It is that month of the year where medical personnel, health specialists, people who work or volunteer their services in epilepsy societies, epilepsy health bloggers, caregivers and people with epilepsy will do their best to cast epilepsy out of its great darkness into the living bright daylight of the world.

They conduct epilepsy workshops, give talks and seminars regarding epilepsy, promote epilepsy awareness through radio/television talks and interviews, contribute articles and testimonies about epilepsy in the press, hold special fund raising events in conjunction with epilepsy month, sign epilepsy petitions, etc and etc.

On my part, I have an epilepsy poster to share with everyone. The poster has six pictures showing steps to assist someone in a state of seizure.

1. Slip pillow/towel under head - This is to protect the head from injuries.
2. Loosen clothing around the neck - Helps the person in a state of seizure to breath better.
3. Turn the body and head to the side - This is called the recovery position.
4. Do not insert/force anything between the teeth - This can cause further injuries.
5. Do nothing, leave the person to recover - Wait with the person.
6. Assure the person that all is well - After the person has regained consciousness.

Please take special note of the simple steps in helping a person in a state of seizure. Make sure you are helping in the right ways.

My Inspirational Blessing

This world is so hurried, so very frosty sometimes. We brush by people, hustle through crowds, so caught up with living that we forget about life. We forget about others, we fuss over the details, fret over insignificant mishaps, and harbour worries of tomorrow that may never come.

Amidst these incessant doings by the common people of this world, there are people who spend each day waiting for someone that may never come, waiting for words that will give them courage to face another day, dying inside for want of something as small as a smile, a kind word, a squeeze of the hand, or someone to listen, so that they know they're not alone in this world and that their life is worth something... ...that epilepsy does not fail them.

Thankfully, I know of one, one fine lady, epileptic herself, who has risen above and is determined to do what she can about epilepsy. It may not be much, it may not go far, but she never lets go of the hope of ‘what if it does’?

Confronting the afflictions as a consequence of epilepsy is beyond my ability. Embracing epilepsy? I cannot even put a thought to that matter. An epilepsy activist - it is great work, sheer in its magnitude and seems too big to tackle, but Serene does what she can. It might be hard and tedious, but Serene does what she can. She may not have what it takes to finish it now, but Serene does what she can. She may not have the means to go far, but Serene goes with what she’s got. She might not be able to do much, but Serene does what she can. It might cost her everything, but she would do it anyway.

Her once little and insignificant sphere of influence has evolved manifold because of what she has done with her life; her purpose to live each day is identified by the beauty that lies within her imperfection. Tears from her painful confrontation of epilepsy may have once traced the patterns on her cheeks, she may have once spent days wondering what is to come, but today, bitter sweet as it is, she knows that she will never allow epilepsy itself let her down. And for this reason, her grass is always green because she accepts life as it throws itself at her, and never misses the roses for the thorns.

And no, it is not all ease and bliss, for epilepsy is mysterious, and the pain of the great unknown is real. This crushing uncertainty can easily allow the insecurities to take over, and let sorrow eat up the beauty of living. But take heart, for the pain we are made to bear in our lives can destroy us or can very well build us up, and this blog is a testimony to the lives lost, lived and loved through the eyes of an epileptic.

Very often, circumstances arise to shape us into who we are and what we do. Though epilepsy has not changed my life per se, but in circumspect, it is a great reminder of my own weakness. Coming across the life behind this blog has revealed to me how to see past the dirt in my own eyes and to break the shackles of deeply held fears. It has stretched me to new levels of courage an appreciation for life through witnessing the beauty of Serene’s fighting spirit. I encourage you to follow this blog, but more so, the life behind this blog, for as the name says it – a legacy is to come.

Wow.


Written by Clara Wong C H
(A Christian friend of my son, Edmund. She is a kind, compassionate and caring friend to everybody. She is also a very bubbly and cheery person who loves serving in God's ministry. She actively participates in her local Christian cell group - 'Lighthouse 2' in Melbourne, Australia.)

POLICE TO REVIEW HANDLING OF EPILEPTICS


The police have admitted that officers could have done a better job in handling an epileptic man who was denied his medication and had a seizure while in custody earlier this month. The admission came days after The Straits Times reported that Mr Tong Mun Cheong was arrested October 1st on suspicion of being drunk after suffering a seizure along Sungei Road, near Jalan Besar. The 34 year old , who has had epilepsy for more than a decade, was waiting for a cab at the time.

While in custody, Mr Tong said officers denied his appeals to contact his mother, who had medicine that would prevent another seizure and also brushed off requests to send him to the hospital.

A police spokesman confirmed that around 9 pm that day, about two hours after being arrested, Mr Tong suffered a seizure in custody. After being seen by paramedics, he was eventually released about 5 1/2 hours after his arrest.

A police spokesman said the case could have been handled better. We fully empathise with (Mr Tong's) family's anxiety and have explained matters to them. Officers should have quickly put Mr Tong in touch with his family while he was in custody, he added. Also, when the 34 year old's mother came down to the station with his medicine, they should have consulted a doctor instead of turning her away, the spokesman said.

Mr Tong said he told officers at the station that he was suffering from epilepsy, but they did not believe him. The police spokesman confirmed this, but added that when another officer asked him for details, he remained silent. This is the second time since 1999 that Mr Tong has been arrested after a seizure. Police said that since 2004, they have contracted a professional private medical group to develop training packages to help officers identify and manage people with epilepsy.

They will now be contacting non-profit Epilepsy Care Group to explore their views and ideas as to how procedures can be improved in such situations.



By Esther Tan
The Straits Times - Singapore

Oct 22, 2008

MAN ARRESTED OVER 'DRUNKEN BEHAVIOUR'

'I was having a seizure'

Epileptic's mum claims she wasn't allowed to give son his medicine in lock-up

By Esther Tan

WHEN Mr Tong Mun Cheong woke up following an epileptic seizure on Oct 1, he found himself handcuffed and inside a police lock-up. The last thing he remembered was waiting for a taxi in Sungei Road earlier that evening. Mr Tong, 34, said a police officer told him he had been taken in for drunken behaviour and refused to let him call his mother for his seizure medication.

'I told them I had fits but (the police) didn't believe me. I asked them to take me to the hospital, but they said 'no',' said Mr Tong, who has been suffering from epilepsy since 1996. After three hours in the lock-up without food, water or medication, Mr Tong suffered another attack.

His mother, Madam Er Swee Chew, told The Straits Times that the officers still would not let her son go. 'They told me he was having an attack but there were ambulance staff attending to him,' said the 67-year-old housewife. She had his medication, but the officers would not give it to him, she said. They also refused to talk to staff at the Singapore General Hospital who could verify her son was epileptic, she claimed. It was only after Mr Tong's older brother spoke to them that he was finally released. 'Mun Cheong's brother told them that if they didn't release him, they had to be responsible for anything that may happen to him,' said Madam Er. It was past midnight by then.

It is not the first time that epilepsy patients, like Mr Tong, have been arrested by the police on suspicion of unruly behaviour or drunkenness. Mr Goh Keng Hwee, executive director of the charitable organisation Epilepsy Care Group, said his group has encountered at least five such cases in the last three years. They were released when the police confirmed with hospitals and family members that they were epileptic.

Her son had been arrested before, in 1999, said Madam Er. Then, officers allowed her to see him, she said. They also took him to a hospital.

Epilepsy is a neurological condition in which recurrent, unprovoked seizures take place in sufferers, said Dr Ho King Hee, 45, a consultant neurologist. Mr Goh estimates that 16,000 people here have epilepsy.

Another patient, who declined to be named, told The Straits Times he was arrested by the police last month for brandishing a knife during a quarrel with his 15-year-old son. He has no memory of the incident, as he was suffering a seizure.

While the behaviour of some people having a seizure may appear to be bizarre, drunken or disruptive, they are rarely violent, said Mr Goh. Those around them should let the seizure pass and make sure the person does not hurt himself. If it lasts more than five minutes, they should call an ambulance.

Members of the care group are issued a card containing information such as their addresses, the kind of medication taken and their doctors' names. Mr Tong had a card, but was not carrying it when he was arrested.

In a letter to The Straits Times Forum page on Monday, Mr Goh noted that there was a need for the police to recognise the signs of a seizure. He said the care group had approached the Singapore Police Force in 2004 with an offer to conduct training classes for officers and recruits but it was not taken up. A police spokesman told The Straits Times yesterday that they were looking into the case. He maintained that police officers are trained to identify and handle persons suffering from various medical conditions, including epilepsy.

When contacted, the mayor of the North West District, Dr Teo Ho Pin, said it would be good for police officers to recognise the signs and symptoms of epilepsy. He said that as officers would not want to be responsible for administering medication, the best thing to do would be to send the person in question to hospital.

Source : straits times - singapore

MUSIC SEIZURES

Musicogenic epilepsy is a rare condition (only 150 cases have ever been reported) in which sufferers have seizures when they hear certain types of music. The seizure-inducing tunes are different for each individual, and range from classical to reggae to jazz to rock and pop.

Doctors aren’t sure why the music has such a negative effect on these patients, but they think it might have something to do with the rhythmic pattern affecting brain activity. As with other forms of epilepsy, sometimes this condition can be treated with medication. Surgery to remove part of the brain is the last resort.

(Source: Scientific American)

www.earlytorise.com

BEAUTY AND THE BEAST

I have no recollections of having febrile seizures when I was an infant. My mom had never told me of my condition until at the age of 18 when I started having clusters of tonic clonic seizures. Epilepsy was like a savaging and killing beast to me. I nicknamed it “Epi Beast”.

Every time I regained consciousness after a seizure I would be in a daze. I had temporary memory losses and brief moments of retardation in my limbs caused by overworked and worn out muscles coupled with crippling pain. I always likened my mashed up body to that of a crushed soda drink can. I hated Epi Beast for seizing me, throwing and flipping my body in all directions and wreaking damages to my fragile body with cuts, bruises and swollen lumps that came with internal and external bleeding. I had no idea how long my body could withstand the ravaging forces of the Epi beast.

Thirty over years of putting up with Epi Beast have passed. I survived all the beastly destructions by God’s grace. If not for God’s sustenance I would not be alive today. God tamed the beast in me over time with proper medications that were effective in controlling seizures. I was able to lead a seizure free life for the last four years. On top of that, God used me to be his epilepsy steward.

Promoting epilepsy awareness through my blog and giving epilepsy talks have been the best things I have done in my life. The beauty of my blog is it has reached out to thousands of people in the world. Readers write to praise me for my courage to be open with the topic “My life with epilepsy”. Many readers found my blog to be very inspiring not just for epileptics but also non epileptics. My blog has brought two long lost friends back into my life and also inspired a young working lady to give me a rare and priceless gift that has found a place in my treasure box.

Clara who is gifted with the talent of craftwork had made a special gift for me. She had taken a long time to collect and print out interesting and famous quotes on small pieces of paper. She rolled the printed quotes into small scrolls and placed it into a beautifully decorated box that has a label “Food For Thought”. Clara, inspired by my blog, had given me the beautiful, meaningful and precious gift to encourage me to keep up with my good work in promoting epilepsy awareness.

Thank you very much to everyone who have visited my blog and supported me with constructive comments. Thank you, Clara, for the awesome gift. Without God, my supportive family members, good friends and all of you, I would not be the person I am today.

BEAUTY OVERPOWERS BEAST

SOUP VAN

St Vincent de Paul Society was founded in Victoria by Fr Gerald Ward at St Francis' Church, Melbourne on 5 March 1854. For over 150 years, home visitation has been the core work of the Society. Volunteers visit people in their homes with aims of helping men, women and families to break their cycle of poverty and disadvantage. Food are also being given out on the streets to the homeless as well as delivered to the homes of poor people in Night Patrol Vans.

Early last month, I volunteered to join members of "Light House", a cell group of Cross Culture Church, to deliver soup, sandwiches and cordial drinks to poor people who live in boarding houses. My visit to the appalling and dilapidated rooms of the poor people was a visit that served as a constant reminder of how extremely blessed I am even though I am epileptic.

At the end of the visitations, my son and I had sore arms and painful hands as a result of carrying heavy basket loads of sandwiches, thermal flask of hot soup and big tubs of cordial drink. To both of us the temporary pain we had were gratifying pain knowing that we had done the least to the poor.

Count our blessings and look beyond epilepsy. There are so many people in worse conditions then just being epileptic.

Perspective from Melbourne's poorest people

- Catherine Deveny
October 8, 2008 - 12:00AM

When you have nothing, Wall Street's crash seems irrelevant. THE other day I went out on a soup van that provides food for the poor. Living on a pension must be difficult enough. Imagine how hard it is living on a pension and suffering a mental illness, being a survivor of abuse, battling addiction or coping with your life imploding. Now that's a full-time job. Try that and being homeless.

I'm surrounded by middle-class whingers obsessed by losing a few grand in superannuation who are driven by insecurity and racked by fear. Fear of what? Chances are it'll never happen. In five years most of these people will be in the same house, same car, same relationship and same job. Time for an icy-cold can of perspective. The soup van visited half a dozen boarding houses. Some made me proud to be part of a society that treats its poor so well. Other places made me feel sick. Smelly, tiny rooms crammed with possessions and sadness. Sick, dirty people lying on beds, smoking and watching television all day. A smacked-out bloke looking straight through me as I thrust a cup of soup into his hand. He didn't say thank you. Why would he? I wondered what horror it felt like waking up and being him.

Behind one door were two sad-looking blokes with stained beards stinking of dope, beer and unwashed clothes. They had a dog. "What's her name?" I asked. "Bitch," they said. Norm and June lived in a small room. With one single bed he was lying in the bed. I assume she slept in the chair. They were both about 70.

Some doors we were told not to knock on because the inhabitants were a bit aggro. I got the feeling that the words "a bit aggro" were an understatement. The words I could smell were volatile, violent and scary.

Kids live in these boarding houses? I didn't see any. Which was lucky. If I had, I would have collapsed into tears and had to fight every impulse to bundle them up, take them home, feed them a roast and tuck them into bed so they could wake up and not be afraid of what was behind any door. I hope they feel loved.

Other rooms were just as small, but clean and well looked after. One well-dressed bloke told us he'd been given tickets to Mame and he'd had a wonderful time. Upstairs lived a tall regal-looking African guy. In his room were a bed and a computer. On the walls were company structures written on butcher's paper. "What's that about?" I asked as I fished him out a couple of sausage rolls. "That is for my study. I will finish a business degree in five weeks and go back to Sudan and work for the Government."

"Never slept with an ugly woman," said old Bob. "Woken up with a few though." We all laughed, a dozen of us with flasks of soup, baskets of sandwiches and insulated bags of hot food sitting in his decrepit but neat boarding house room. "I love putting a smile on people's faces," he said, "because then they go out and put a smile on someone else's face." And we left. Old Bob seemed happier than most of the people I know with jobs, families, someone to curl up with at night and a roof over their heads.

Tone of the vannies told me that old Bob is dying very fast and very painfully. While sharing a squalid, cramped boarding house with blokes who are down on their luck, high on drugs, low on cash or off their heads. Bob's on his own. And chances are he'll die in that room. But Old Bob always manages to put on a show when the soup van arrives.

And you know what? He doesn't give a stuff about Wall Street. That's why I went out on the soup van. To meet some people who weren't obsessed by the global financial crisis. Why would they be? Things couldn't get much worse.

About 9.30pm, as we were about to leave the last boarding house, a woman with twin girls, about nine years old, approached us. They took a good 20 minutes to work out what they wanted to eat. "They're fussy, those kids," said one of the vannies affectionately. As we pulled away from the kerb, I watched the mum and her daughters sit eating sandwiches and drinking soup like they'd never seen food before. My gut fell. The vannies told me that they were regulars.

Let's hope the economic meltdown is a spiritual awakening that helps us be grateful for what we have and not worry about what will probably never happen. If your home is suddenly feeling like a house of cards, may I suggest a night out on the soup van.

Source : www.theage.com.au/opinion/perspective-from-melbournes-poorest-people

Cross Section Of The Brain (Drawn on 27 August 2008)

ARTIST WITH A GIFT FOR HEALING

An architect who turned to painting after being told to use her brain more to help control epilepsy is now helping others rebuild their lives after illness and injury. Xia Lu, 47, from Liverpool, never imagined she would become an artist. Her drawing and sketches were a hobby, a spin-off from architectural work in her homeland of China.

She only started to take painting seriously when doctors in Liverpool told her that as part of her self-treatment for epilepsy, she needed to use her brain more. Unless she did this, there was a danger that she might lose her power of speech or end up in a wheelchair, they warned her.

Watercolour painting has now given Xia Lu a new desire to live her life to the fullest and this energy shines through her paintings which have been exhibited at Liverpool Anglican Cathedral, Blackburne House and in Calderstones Park. Now Xia Lu has opened work shops using her special watercolour techniques at the Neuro Support Centre in Norton Street, Liverpool. Every Monday afternoon, she teaches clients at the centre, as well as their family members and carers, the gentle art of watercolour painting.

The idea is that the painting classes will give people who have suffered brain injuries or trauma after accidents, a new sense of self confidence. Many members of her class have already produced their own watercolours and the centre is planning an art exhibition to display their work.

Xia Lu, who became epileptic as a teenager said, "I am happy to share my experiences as a painter with other people. I will welcome anybody along to my classes. I also teach Tai Chi and Qi Gong and they also help me control my epilepsy. The doctors wanted to see if using my brain as an artist will help improve my epilepsy so that attacks are reduced".

Brian Simpson, work and life co-ordinator at the neuro centre said, " The classes have been set up for clients of the neurological centre and their families and carers. They are proving very popular. It is part of a programme to rebuild their confidence and purpose. A lot of people who suffer from neurological conditions need to be given a purpose in life. Xia Lu's classes help give them purposes and gets them out of their homes".



source : Liverpool Daily Post

BE THANKFUL

Be thankful that you don't already have everything you desire. If you did, what would there be to look forward to?

Be thankful when you don't know something,
for it gives you the opportunity to learn.

Be thankful for the difficult times.
During those times you grow.

Be thankful for your limitations,
because they give you opportunities for improvement.

Be thankful for each new challenge,
because it will build your strength and character.

Be thankful for your mistakes.
They will teach you valuable lessons.

Be thankful when you're tired and weary,
because it means you've made a difference.

It's easy to be thankful for the good things. A life of rich fulfillment comes to those who are also thankful for their setbacks. Gratitude can turn a negative into a positive. Find a way to be thankful for your troubles, and they can become your blessings.


Author - Unknown

Source : www.motivational-messages.com

FAREWELL AUNTIE


My flight departed at 3pm from Melbourne Airport on 30th September 2008. I was flying home to Kuala Lumpur, Malaysia. The flight was a smooth flight but my heartbeat was very turbulent. The seven hour flight seemed like eternity. I was pensive and very worried if I will make it in time to see my dying aunt for the final time.

The plane finally touched down in Kuala Lumpur International Airport. I thanked God for a safe flight home and also a swift and safe taxi journey to the hospital where my aunt was being admitted. The sight of my aunt in skin and bones and groaning in excruciating pain was heart wrenching and piercing. I grabbed my aunt's hands and told her in tears that I had returned to see her again. My aunt suffered terribly from a fractured hip bone as a result of a bad fall in her bedroom toilet and also from kidney failure.

The next evening at 7.15pm my aunt passed away peacefully after having her last meal. Her death had led me to think of my own death. When will be the day I die? Whether I am epileptic or not, my final day in this mortal world will come when God calls on me. My aunt's death has propelled me to promote epilepsy awareness at a pace more urgent than before lest I run out of time before I leave this world.

Time waits for no man. So, if you have been procrastinating on things that you ought to have done a long time ago, do it now. And if you think epilepsy is your greatest hindrance to pursue positive goals in your life, think thrice. I am one who will not allow epilepsy to be a setback in my life. My life with epilepsy goes full steam ahead.


MAKE THE BEST OUT OF LIFE WHILE WE ARE IN THIS PASSING LAND

QUOTATION OF THE DAY

"White Roses" Drawn on 25 Aug 2008

The most glorious moments in your life are not the so-called days of success, but rather those days when out of dejection and despair you feel rise in you a challenge to life, and the promise of future accomplishments.

By Gustave Flaubert



Source : quotationsbook.com

People's airbag 'prevents injury'

The head of the firm behind the airbag was on hand to demonstrate it

A Japanese company says it has made an airbag designed to stop elderly people injuring themselves by falling over.

The device is strapped around the body and inflates in 0.1 seconds if it detects it is accelerating towards the ground, the manufacturers say.

The Tokyo-based company, Prop, says the product is designed to cushion a fall using two separate pockets of air.

One pocket will be behind the head and the other around the hips. It does not protect those who fall forward.

The airbag has been unveiled at the International Home Care and Rehabilitation Exhibition in Tokyo.

The president of Prop, Mitsuya Uchida, says it is aimed especially at old people with epilepsy, who are very vulnerable to injury.

Japan has a large elderly population with nearly 30 million people over the age of 65. There is a huge market for products to protect and assist them.

Source : BBC News

WWW.WELLSPHERE.COM


The latest. A unique and most updated kind of health website ever to be launched in our generation now.

Highly recommended health website for everyone to visit. If you are looking for information regarding any health issues under the sky visit wellsphere.com and you will be amazed at how easy and quickly you can find your answers and support from health experts and doctors including health bloggers whose blogs contain extensive information regarding health issues and also provide inspiration and motivation.

I am very proud to be a part of Wellsphere.com.


VISIT WELLSPHERE NOW

WE ARE ALL EQUAL AND IMPORTANT IN GOD'S EYES


It means a great deal to those who are discriminated and oppressed ( particularly people who are disabled/epileptic and are denied of equal rights in life ) to know that they are not alone. And never let anyone tell us that what we are doing is insignificant. A neurologist told me that I am a lone ranger in my epilepsy awareness mission. I was not bothered by his degrading and discriminatory remark at all.

A neurologist studies from books about people with epilepsy. A person with epilepsy studies from life's struggles, hardships, seizures that come with injuries and graduates from the "University of Society" with a degree in Dissentment. We dissent people who look down on us.

GOD made all of us equal. No one is higher than another.

MUM WITH SPECIAL CHILD

A friend of mine, Geok, invited me to join her for lunch with two of her friends recently. At lunch I met Evelyn for the first time. She is a beautiful lady with charisma. She exudes love, grace and positive energies. A friend of hers nicknamed her “ Sunshine “.

Evelyn is a mother of two daughters and a special son. Her 27 year old son, Gerald is a severely mentally disabled person with epilepsy. Gerald experiences seizures every day and also has other numerous medical problems. Evelyn told me, “I have only two choices - to depend on my own strength to bring up my special child and face challenges of life alone or to place my trust in God who is my rock, strength and redeemer”.

Drinking tea I listened to Evelyn recapped one of Gerald’s near death experiences. It was about one and a half years ago when Gerald’s mild epileptic fits developed into a full blown generalized seizure. He had three episodes of generalized seizures that fortnight. There were no warnings showing or indicative of impending seizures.

His eyes rolled up into their sockets and his body became stiff for a while followed by uncontrollable jerking. His face turned blue (he also has a hole in his heart) and his breathing stopped for a little while. He was unconscious. Administering his usual anti epileptic drugs she failed to help Gerald regain consciousness. She and Luz carried Gerald into their car and rushed him to University Hospital. By the time they arrived at the hospital Gerald’s seizures had stopped. He was breathing normally again.

Listening to Evelyn and Gerald’s stories brought tears to my heart. I was very touched by their extraordinary love for each other. Their relationship is truly a fine example of blood is thicker than water. Evelyn is an outstanding role model of a caring and endearing caregiver.

I have a friend who manages a home for people with all kinds of disabilities ranging from epileptic to downs syndrome, autistic to mentally disabled, deaf and blind to cerebral palsy. Mr Samson told me the home was set up in the sixties and was originally meant to be a home for people with epilepsy only. Over the years guardians and parents had left and abandoned their disabled children at the home. Parents pay a minimal monthly sum of money for their disabled children to be taken cared by the home. After paying the initial few payments parents conveniently dump and disown their disabled children by not turning up at the home anymore. The irresponsible and scheming parents used fictitious addresses or moved places to avoid being contacted by staff of the home.

I appeal to parents who intend to abandon their disabled children into charitable homes never to do so. Your disabled children are the most precious gifts from God. You gave them life and they deserve the best in life.

THEY ARE SPECIAL. LOVE THEM WITH ALL YOUR HEARTS, MINDS AND SOULS FOR THEY DID NOT ASK TO BE DISABLED.

TREATING EPILEPSY IN DOGS

Treating epilepsy in dogs can be as frustrating as the disease itself. It requires steady monitoring with bi-weekly blood tests to check the concentration of the drug that has been administered. It also requires monitoring the frequency and severity of epileptic seizures.

Furthermore, seizures happen suddenly and it is crucial for you to closely observe the symptoms during a seizure and report them precisely and in great detail to the veterinarian. This helps in diagnosis and choosing the particular path of treatment. In several cases the threshold of tolerance of owners is often crossed with the regular recurrence of seizures and the time demanded for monitoring an epileptic dog.

Bromide was one of the first drugs used for treating epilepsy in dogs. It was discovered during the Victorian times. It was later dismissed as a feasible treatment because of the psychological problems it induced in humans. Subsequently, veterinarians rediscovered the drug for treating dogs since it was confirmed that the drug did not cause such psychological problems in dogs.

Bromide is blended with either sodium or potassium to form crystals like table salt and packed in capsules for administration. The drug has a long half life and consequently it takes a fair amount of time for it to be passed from the body. The slow acting drug, therefore also has a lag time before the effects of the drug are actually experienced.

With the uncovering of Phenobarbital, bromide has been demoted for use in particular instances of epilepsy where the dog is diabetic. Moreover, bromide was never sanctioned by the FDA and veterinarians had been looking for special permission for its use. Primidone is an additional drug used for treating epilepsy in dogs.

It acts in the same way as Phenobarbital since it gets converted to Phenobarbital in the body. As Phenobarbital is useable in liquid as well as tablet form of wide-ranging potencies, it can be utilised for dogs of all sizes and ages.

Diazepam, the generic name for better recognised drug, Valium, has a limited effect on dogs and looses its potency if administered daily. Although a tranquilizer, it is an effective method of treating a dog while the seizure is in progress. Even so, it is not recommended for preventive treatment.

Newer drugs like Carbamazepine, Lamotrigine and Valproate semisodium, that are now being used more often for human epilepsy may not be appropriate for dogs due to the easy elimination of the drug and the toxicity that they are apt to cause to dogs.

The side effects of drugs for treating epilepsy in dogs, have to be considered in relation to the risks of frequent epileptic canine seizures. Treatment of epilepsy primarily involves anticonvulsants that have a sedative effect. The dog is liable to be lethargic when the drug is administered or when the dosage is increased.

Seizures can be caused by reasons other than epilepsy also. Administration of medication must comply to recommended dosage If the dog does not react to treatment then the most probable cause is in all probability to be found in inappropriate diagnosis, insufficient dosage, wrong choice of drug or resistance to the therapeutic effect of medication.

Source : GOOD-DOG-CARE.COM

Warning of epilepsy drowning risk

Emma Wilkinson Health reporter, BBC News People with epilepsy should take precautions when swimming People with epilepsy are up to 19 times more likely to drown than those in the general population, research suggests. A University College London review of 51 studies from around the world showed 88 deaths where five would be expected, adding many could have been prevented. Taking showers instead of baths and swimming with a friend could save lives in the event of a seizure, suggests the report in Neurology journal. Epilepsy affects around one in every 131 people in the UK. People with the condition are more at risk of accidental death and a higher chance of drowning had been reported, but the risk had never been quantified. Every year a number of patients die in the bath so convincing people to take showers would be life saving Professor Ley Sander, study leader A team at the Institute of Neurology at University College London looked at data from 51 studies from around the world. They compared the number of deaths from drowning with what would be expected in the general population of the country involved. Overall the risk was 19 times higher for people with epilepsy and in England and Wales specifically the increased risk was 15 times higher. Prevention Study leader Professor Ley Sander, who works part-time as an NHS consultant in epilepsy, said he had two patients die from drowning this year alone. The numbers are relatively small but the important thing is that these deaths are preventable. Every year a number of patients die in the bath so convincing people to take showers would be life-saving. He added, "We're not saying that people shouldn't swim but that they need to be aware of the risk and to go with someone who can help if they have problems." Professor Sander also advised telling a lifeguard if swimming at a swimming pool and to swim during quieter sessions so it was easier for the lifeguard to see them. He stressed that those most at risk were the people with "active" epilepsy and who had regular seizures. "We always need to do whatever we can to ensure seizure control," he said. A spokesperson for Epilepsy Action said: "People with epilepsy can enjoy the benefits of taking part in many water activities, but need to take sensible precautions to reduce risk of drowning. Because there is always a possibility that a seizure could happen, it is important not to underestimate the potential risks when in or near water." " My Drowning Experience " by Serene This BBC write up reminds me of my own drowning experience. Unaware that a seizure would happen so untimely when I was swimming in the water of Port Dickson, a beach resort, I almost drowned to death. If not for the swift action of my brother's friend I would be dead thirty years ago. Since that incident that almost took my life I grew to be very phobic of swimming all alone. In fact I hate to be in the sea water for the rest of my life as the water constantly reminds me of potential death at my doorstep. I also dislike swimming all the more because every time I swim in the pool my husband or son will have to be constantly by my side all the time. This gives me a great sense of restriction and insecurity in my life which I dread. I prefer not to swim at all and choose to sit by the side of the pool looking at my husband and son swim or read my favourite book, newspaper or magazine. Apart from swimming I have lots of other interesting and active sports to engage in. I swapped swimming for bowling. In the bowling alleys I get to enjoy bowling on my own very much. At least I won't have to have someone to keep their eyes on me like a hawk. And although I never had proper lessons in bowling I bowled freestyle in my own "Serene" ways. I enjoy a great sense of freedom in this game and always end up being happy with my bowling workout.. Epileptics can still enjoy a great sense of freedom if only they know how to. Explore, Experience and be Exhilarated with all the things we are able to do and achieve in life.

Five-year-old's 999 saviour call

Jakob Seviour stayed calm and made the 999 call

An ambulance service has praised a five-year-old boy after he reported his mother had collapsed and was unconscious in their home.

Jakob Seviour from Frome in Somerset may even have saved his mother's life, a spokesman said.

Sarah Welsh suffers from epilepsy and had told Jakob how to react.

Alan Jacob of the Ambulance Service said: "He was incredibly calm, incredibly grown up and he answered the questions so precisely."

After Jakob's call ambulance staff rushed to the house and successfully revived Ms Welsh.

Mr Jacob added: "If he didn't understand them, then he would say 'I don't understand', so for a lad of his age he was really incredibly grown up."

Ms Welsh told BBC News: "I remember feeling slightly ill because normally I get fair warnings but this time it just came over me so quickly.

"I am so proud of him - I have heard the tape and it broke my heart really."

Source : BBC News

MEANINGFUL AND FRUITFUL EPILEPSY BLOG


When my disabled activist friend told me to set up my own epilepsy blog I was very reluctant to do so. After much thoughts, consideration and also motivated by my husband (Cheong) and son (Edmund) I decided to set up my own blog. I had no knowledge on how to go about setting up a blog but with my son’s assistance the blog was started. There was no looking back. Today, my blog has been the most meaningful and fruitful form of electronic communication in my life. People from all walks of life and around the world are able to be in contact and communication with me. For an epileptic like me who was once a great recluse my blog has brightened and painted my life beautifully.

Friends write to tell me their epilepsy stories and caregivers tell me how they have accepted and coped with their epileptic son or daughter. Below is my Indonesian friend's story.

“My name is Yoedo Soetrisno. I am a Muslim father of 3 children. I live in a small city area in central Jawa of Indonesia. On one particular night I did not expect my second son who is 8 years old to have a seizure. The seizure lasted about 10 minutes. He did not show any symptoms or have a temperature prior to his seizure. He was a very normal child. We rushed him to the nearest hospital. He regained consciousness when we arrived there.

The result of an EEG test confirmed that my son has epilepsy. It was a test and challenge for our family to come to terms with. To know and understand more about epilepsy I started sourcing around for more information about epilepsy. I asked my friends, neurologists and also searched the internet websites. I came across this blog managed by Serene Low who proved that she could still live a normal and meaningful life although she had being an epileptic for thirty over years. I found a lot of useful information in her blog which explained the recent seizure that my son had.

It is clear that we can still lead a normal life by taking the appropriate medication. My son is taking two spoonfuls of anti epileptic syrup a day. My son is as normal and active as other children. On his school report card day he was the second best student in his class. He is also actively playing musical instruments especially the organ and takes part in sports.

I hope my son’s story is an encouragement to all caregivers who are experiencing the same problem as me. I continually seek forgiveness and healing from God.”

Drawn on April 2008 ( Summer Flowers)

SHAKE IT OFF AND STEP UP


A parable is told of a farmer who owned an old mule. The mule fell into the farmer's well. The farmer heard the mule 'braying' - or - whatever mules do when they fall into wells. After carefully assessing the situation, the farmer sympathized with the mule, but decided that neither the mule nor the well was worth the trouble of saving. He called his neighbors together and told them what had happened and enlisted them to help haul dirt to bury the old mule in the well and put him out of his misery.

Initially, the old mule was hysterical! But as the farmer and his neighbors continued shoveling and the dirt hit his back...a thought struck him. It suddenly dawned on him that every time a shovel load of dirt landed on his back...HE SHOULD SHAKE IT OFF AND STEP UP! This he did, blow after blow.

"Shake it off and step up...shake it off and step up...shake it off and step up!" he repeated to encourage himself. No matter how painful the blows, or distressing the situation seemed the old mule fought "panic" and just kept right on SHAKING IT OFF AND STEPPING UP!

You're right! It wasn't long before the old mule, battered and exhausted, STEPPED TRIUMPHANTLY OVER THE WALL OF THAT WELL! What seemed like it would bury him, actually blessed him...all because of the manner in which he handled his adversity.

THAT'S LIFE! If we face our epilepsy problems and respond to them positively, and refuse to give in to panic, bitterness, or self-pity...THE ADVERSITIES THAT COME ALONG TO BURY US USUALLY HAVE WITHIN THEM THE POTENTIAL TO BENEFIT AND BLESS US! Remember that FORGIVENESS--FAITH--PRAYER-- PRAISE and HOPE...all are excellent ways to "SHAKE IT OFF AND STEP UP" out of the wells in which we find ourselves!





- Author Unknown

SCANS OR TESTS DESIGNED TO DETECT ABNORMALITIES WITHIN THE BRAIN

Electroencephalogram (EEG)

An EEG records the electrical activity of your brain via electrodes affixed to your scalp. People with epilepsy often have changes in their normal pattern of brain waves, even when they're not having a seizure.

To prepare for an EEG, avoid elaborate hair styling, metallic hair spray or greasy hair dressing. Refrain from caffeine for six hours before the test. The procedure itself is painless and usually lasts about 30 minutes. However, it can take as long as an hour to place the electrodes on your scalp.

In some cases, your doctor may recommend video-EEG monitoring. This can be helpful because it allows your doctor to compare — second by second — the behaviors that occur during a seizure with your EEG pattern from exactly that same time. This helps your doctor pinpoint exactly where your seizures originate, which aids treatment decisions.

Video EEGs are expensive because you usually must stay at the testing facility for several days. The EEG electrodes stay attached for that entire time, and you are videotaped continuously.

Computerized tomography (CT)

Using special X-ray equipment, CT machines obtain images from many different angles and join them together to show cross-sectional images of your brain and skull. CT scans can reveal abnormalities in brain structure, including tumors, cysts, strokes or tangled blood vessels. This helps your doctor rule out other potential causes of your seizures.

To prepare for a CT scan of your head, you should remove such things as earrings, eyeglasses, dentures and hairpins. You may need to have an intravenous (IV) line inserted if your test requires the injection of a contrast material — which makes abnormalities easier to see. During the test, you will lie on a table that slides into the CT machine. Depending on the number of images needed, the scan can take between two and 20 minutes. The procedure is painless.

Magnetic resonance imaging (MRI)

An MRI machine uses radio waves and a strong magnetic field to produce detailed images of your brain. Like CT scans, MRIs can reveal brain abnormalities that could be causing your seizures. Dental fillings and braces may distort the images, so be sure to tell the technician about them before the test begins.

During the test, you will lie on a padded table that slides into the MRI machine. Your head will be immobilized in a brace, to improve precision. The test is painless, but some people experience an uncomfortable feeling similar to claustrophobia inside the MRI machine's close quarters. If you think you may have a problem like this, your doctor can prescribe anti-anxiety medications beforehand.

A special type of MRI — called functional MRI (fMRI) — can measure the small metabolic changes that occur when a part of your brain is working. An fMRI can record which areas of your brain are working when you perform certain tasks, such as rubbing a block of sandpaper or answering simple questions.

Doctors know the general areas of the brain responsible for such tasks as thought, speech, movement and sensation, but the precise locations vary by individual. An fMRI can identify the locations of these critical functions so that your doctor can determine if epilepsy surgery would be a safe option for you.

Positron emission tomography (PET)

PET scans use injected radioactive material to help visualize active areas of the brain. The radioactive material is tagged in a way that makes it attracted to glucose. Because the brain uses glucose for energy, the parts that are working harder will be brighter on a PET image.

After the radioactive material is injected, it will take between 30 and 90 minutes for the substance to accumulate in your brain tissue. During this waiting period, you will be asked to rest quietly and not talk or move around much. The actual scan takes 30 to 45 minutes. The amount of radioactive material used in the test is very small, and its glucose-binding activity in the brain lasts only a short period of time.

Single-photon emission computerized tomography (SPECT)

This type of test is used primarily in people being evaluated for epilepsy surgery when the area of seizure onset is unclear on MRIs or EEGs. SPECT imaging requires two scans — one during a seizure and one 24 hours later. Radioactive material is injected for both scans and then the two results are compared. The area of the brain with the greatest activity during the seizure can be superimposed onto the person's MRI, to show surgeons exactly what portion of the brain should be removed.

Source: mayoclinic.com

JEANS FOR GENES DAY & GEFS+

Jeans for Genes is a major fundraiser of the CMRI (Children's Medical Research Institute) in NSW, Australia. Jeans for Genes Day is held on the first Friday in August each year. It is a day where everyone can wear jeans and simply make a donation or buy a badge whilst supporting a great cause in helping today's scientist for tomorrow's children.

Chances are you probably know someone who has a genetic disease because one in twenty children are born with some form of genetic fault. This prompted me to wonder if I have some form of genetic fault that resulted in me being epileptic.

On a recent trip to my neurologist's clinic I was made known of GEFS+ which stands for Generalised Epilepsy with Febrile Seizure plus. GEFS+ is an unusual epilepsy syndrome in that it describes families who have several members from different generations with epileptic seizures.

In family members with epileptic seizures they almost start with febrile convulsions (seizures associated with high temperature). Normally febrile convulsions stop after the age of six. In GEFS+ families, children may go on to have febrile seizures well beyond this age group or develop other seizure types not associated with fever. Some people with GEFS+ are found to have a specific fault in their genes. This may provide some clues to the genetic basis of some forms of epilepsy.

My mum's family has three generations of people with epilepsy. My aunty (mum's sister) was epileptic. My brother had febrile seizure which he had outgrown. I had febrile seizure which stopped at the age of 7 but started having tonic clonic seizures at the age of 18. My cousins and my niece had febrile seizure which they all have outgrown.

Do you have epilepsy and also come from a family with generations of people having epilepsy? If yes, you might want to consult a neurologist or epitologist to enquire more about having a DNA test done.






Source: epilepsy.org.uk
jeansforgenes.org.au

DEALING WITH FITS

WHEEL POWER
By ANTHONY THANASAYAN

24 July, Thursday

Having lived with epilepsy for more than 30 years, Serene Low is out to promote awareness about the condition.

SERENE Low is no ordinary woman. The plucky mother and homemaker from Bangsar, Kuala Lumpur, has been an activist for persons with epilepsy (PWE) for the past seven years. She chose to champion the cause because she has epilepsy – a condition marked by seizures that can occasionally be violent. The attacks occur because of over-activity of the brain cells which produces a surge of electricity.

Serene, who is close to 50, has been living with epilepsy for over 30 years. She has endured more than a hundred seizures. The last one occurred four years ago. Fortunately, the convulsions stopped after she started taking medication.

Serene was all praise for an epilepsy congress she attended in Xiamen, China, in May. The 7th Asian Oceania Epilepsy Congress (AOEC), a four-day biennial event, was attended by 1,600 delegates from around the world.

“The congress was about PWE and their caregivers,” she explained. We learnt about the latest progress in the treatment of epilepsy in developed and developing countries.

“The segment I liked most was the one on Adolescence & Women. Using a 15-year-old epileptic girl’s condition as a case study, the medical delegates were reminded to be extra careful when prescribing anti-epileptic drugs,” said Serene. The delegates were told that the medications prescribed should not adversely affect a PWE’s transition through life, from adolescence to pregnancy and motherhood, and then eventually to menopause and old age.

Serene said caregivers were encouraged to have a mobile phone with camera and video functions handy at all times, so that they could take photos and video shots when a loved one is experiencing a seizure. “This will help the neurologist to assess the patient’s epileptic seizure episodes more accurately,” said Serene. “Watching a seizure in progress or through a photo shot gives doctors a better idea of our seizures than trying to explain to them verbally.”

Serene said the congress gave her a rare opportunity to meet delegates from other countries. By meeting people from countries such as the Philippines, China and Mongolia, I was able to foster new friendships and learn about various cultural reactions towards epilepsy and how the delegates were managing in their own countries.

“Some of the PWE at the congress received special recognition awards for their struggles. They presented moving testimonies of how epilepsy had affected their lives, and how they won each personal battle.” The delegates also learnt about epilepsy awareness programmes in other countries.

“Taiwan gave an interesting presentation on how they tackled the stigma of PWE by turning them into epilepsy ambassadors. India has its distance learning methods, while in Shanghai, more support groups are slowly emerging,” said Serene.

The term “epilepsy” carried a negative connotation in some local languages and dialects, and this added to the stigma of PWE. The delegates talked about finding new terminologies so that the public could start viewing PWE more positively.

Serene recalled a quote from an Australian speaker: “When I let go of what I am, I become what I might be.” Those words helped to fuel my passion for the epilepsy awareness campaign,” said Serene.

“I hope that together with the government and relevant bodies, we can bridge the wide gap between society and people with epilepsy.”

MOTHER HONORED FOR FIGHT TO ENSURE JET’S LAW LEGACY

THERE are legendary tales throughout history about what mothers have done to save their own children. In Queensland, there is a mother who has saved the lives of countless others after she was denied the chance to save her own son. Anita Rowland's one-woman battle to change legislation after a driver suffered an epileptic fit and crashed into her car at 240km/h in 2004 - killing one son and paralysing the other - is now enshrined in state law.

Jet's Law - named after 22-month-old Jet Rowland, who died in the 2004 crash - is the first eponymous law in Queensland. Most importantly, it has seen more than 121,000 drivers register with Queensland Transport the medical condition that affects their driving.Ms Rowland, 31, a Queensland Police Service senior constable, has been nominated for the 2008 Pride of Australia Courage award for somehow finding the fortitude, despite her grief, to not only fight for the new law but to educate thousands across the state in driver workshops about the aftermath of road tragedy."

"I remember being at home and I can't seriously put into words how much I missed Jet. I remember thinking - all I want is Jet back," she said. "But that was never going to happen. So, I guess it was a very personal decision for me to want to do something positive with this experience. I didn't want another family to go through the grief that was inflicted on my family.”

"The driver that collided with us was a lifelong epileptic who was suffering from unstable epilepsy but continued to drive knowing that his epilepsy was unstable. The choices and the decisions that driver made - putting the convenience of having a licence above every other road user and choosing to ignore and take responsibility for their medical condition - those choices ended Jet's life and Bailey's ability to walk. I really felt very passionate that this incident should never have happened and I needed to do something to prevent that from happening. "

"I would trade everything I own to trade Jetty back and because I can't change what happened, I really want Jet to be proud of me. I want him to be proud that I have done everything I possibly can, and I have done the best as I can and coped as best as I can with losing him so young. I think that when he looks down on me he will think - OK, my mum lost me very young, but she has tried to make something positive out of it.”

"Once upon a time I think it would have been easier to curl up in the fetal position and disappear. Now, however, I think it is harder to live life like that and that you really need to make the most of every opportunity you have because life ... it is very precious."

More than 1450 casualties were recorded as a result of crashes involving drivers and riders with medical conditions in Queensland between July 2001 and July 2006. Reportable medical conditions include dementia, stroke, epilepsy, sleeping disorders and angina. The driver in the crash that killed Jet has been charged with dangerous driving causing death.

July 19, 2008
Source : couriermail.com.au

7^TH ASIAN & OCEANIAN EPILEPSY CONGRESS ( AOEC )

Time passes by so fast. I still have fresh memories of the epilepsy congress that I attended last year and this year’s epilepsy congress is already an event of the past. I had attended the 7^th Asian & Oceanian Epilepsy Congress AOEC ( People with Epilepsy And Caregivers Program ) which was held on 16^th May 2008 at Xiamen, China.

As an epilepsy activist I always look forward to attending epilepsy congresses to learn more about the latest progress in the treatment of epilepsy in developed and developing countries, to participate in Question & Answer sessions (Q & A) of topics that are of great interests to me and naturally also to meet up with my foreign People With Epilepsy (PWE) friends again.

On the 15^th of May I attended a talk organized by UCB (M) Bhd held at the Sheraton Hotel, Xiamen. Three invited speakers spoke on different topics. My favorite topic was Adolescence & Women. A general case study based on a 15 year old epileptic girl was being discussed. The speaker reminded medical delegates that extra careful considerations and right decisions have to be made when prescribing anti epileptic drugs (AED) as the effects of AED will affect the 15 year old girl’s life starting from puberty to finishing university, working to being married and pregnancy to motherhood that will eventually lead to menopause and old age.

The speakers had also highlighted a common point in their talks and that is it is important for caregivers to have their hand phones with camera and video functions always with them. Caregivers can use hand phones to take photo shots and videos of their love ones while in states of seizures. Neurologists can assess their patients’ epileptic seizures more accurately by viewing the photo shots and video clips as compared to verbal reports given by caregivers.

I am the fifth from left. My friends from Singapore, Taiwan and Philippines

On the morning of 16^th of May I was overjoyed to see my overseas friends from Philippines, Taiwan, Hong Kong and Singapore at the Xiamen International Conference and Exhibition Centre. Existing friendships were strengthened and new friendships were fostered. Delegates also came from China, Thailand, India and Mongolia.

The program for this day started with the acknowledgement and presentation of Outstanding Persons Awards to eight recipients from various countries. Recipients gave testimonies of how they struggled with having epilepsy, how they conquered it and how much they had contributed towards epilepsy awareness work in their respective countries.

Speakers for the day came from New Zealand, India, China, Mongolia, Taiwan and Australia. Topics ranged from Epilepsy Distance Learning in India, Formation of a Support Group in Shanghai, Promising Strategy Program in Mongolia, Study on Stigma in China and Introduction of Epilepsy Ambassadors. I found the topic on Tips to Expand Your Organization to be very interesting and _­hope I will be able to share the information I had gained with my fellow friends in Malaysia.

Towards the later part of the day delegates were given opportunities to voice their opinions about whether the term “epilepsy” in some languages and dialects could cause misconception and stigma and also whether there is a need to change the term appropriately to eradicate misconception and stigma. Delegates participated actively in this interactive session with a panel of six neurologists. Because of time constraint a sub panel was being formed to deliberate further on this topic.

The day ended with a buffet dinner for the delegates at the Seaside Hotel which is conjoined to the convention centre. I had some time to mingle with the Chinese delegates. They were very friendly and warm towards me. We had photos taken together and I was also given small Olympic souvenir items by them.

On the whole the 7^th AOEC was an event worth attending for people with epilepsy and caregivers. AOEC is held once every two years in different countries. The next AOEC will be held in Australia in 2010. I returned to Malaysia bearing in mind a quote that an Australian speaker shared with us and that is “ When I let go of what I am, I become what I might be “. My passion in doing epilepsy awareness work remains deep and I hope people with the Ministry of Health, corporate sectors and our local epilepsy society can collaborate better to bridge the wide gap between people with epilepsy and society.