Thursday, December 24, 2009



May we have our own 'nativity' experiences and find joy in our hearts...
Merry Christmas!










Sunday, December 13, 2009

Extraordinary
The smiling crippled girl


Qian HongYan lost her legs in an accident



Her family in China are poor and couldn't afford prosthetic legs, so she uses a basketball to help her move.
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Qian uses two wooden props to drag herself, and never complains, even though she has worn through six basketballs.


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She attends her class


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She always smiles




She Is Always cheerful




She is always positive


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With help from kind souls she is now able to afford a pair of prosthetic legs.
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Smile always
Be grateful with what you have.






Tuesday, December 8, 2009


PHENOBARBITAL


Phenobarbital, a barbiturate, is used to control epilepsy (seizures) and as a sedative to relieve anxiety. It is also used for short-term treatment of insomnia to help you fall asleep.

This medication is sometimes prescribed for other uses; ask your doctor or pharmacist for more information.

How should this medicine be used?

http://4.bp.blogspot.com/_jhEGP2tpmnc/Sas-HaaZfWI/AAAAAAAAAog/T8ikPeTSCuM/s320/Phenobarbital.gif


Phenobarbital comes as a tablet, capsule, and elixir (liquid) to take by mouth. You may obtain a specially marked measuring spoon from your pharmacist to be sure of an accurate dose of the liquid. It usually is taken one to three times a day and may be taken with or without food. If you take phenobarbital once a day, take it at bedtime. Follow the directions on your prescription label carefully, and ask your doctor or pharmacist to explain any part you do not understand. Take phenobarbital exactly as directed. If you are taking phenobarbital to control convulsions or seizures, follow the exact schedule prescribed by your doctor.

Phenobarbital can be habit-forming. Do not use phenobarbital for more than 2 weeks if it is being used to help you sleep. Do not take a larger dose, take it more often, or for a longer time than your doctor tells you to. Tolerance may develop with long-term or excessive use, making the drug less effective. This medication must be taken regularly to be effective. Do not skip doses even if you feel that you do not need them. Call your doctor if you have convulsions or seizures while taking phenobarbital. Do not stop taking this drug without talking to your doctor, especially if you have been taking it for a long time. Stopping the drug suddenly can cause withdrawal symptoms (anxiousness, sleeplessness, and irritability). Your doctor probably will decrease your dose gradually.


What special precautions should I follow?

Before taking phenobarbital,

  • tell your doctor and pharmacist if you are allergic to phenobarbital or any other drugs.
  • tell your doctor and pharmacist what prescription and nonprescription medications you are taking. Some medications may add to the drowsiness caused by phenobarbital.
  • tell your doctor if you have or have ever had anemia or seizures, or lung, heart, or liver disease.
  • use a method of birth control other than oral contraceptives while taking this medication. Phenobarbital can decrease the effectiveness of oral contraceptives.
  • tell your doctor if you are pregnant, plan to become pregnant, or are breast-feeding. If you become pregnant while taking phenobarbital, call your doctor immediately.
  • if you are having surgery, including dental surgery, tell the doctor or dentist that you are taking phenobarbital.
  • you should know that this drug may make you drowsy. Do not drive a car or operate machinery until you know how this drug affects you.
  • remember that alcohol can add to the drowsiness caused by this drug.


What should I do if I forget a dose?

If you take several doses per day, take the missed dose as soon as you remember it and take any remaining doses for that day at evenly spaced intervals. However, if it is almost time for the next dose, skip the missed dose and continue your regular dosing schedule. Do not take a double dose to make up for a missed one.


What side effects can this medication cause?

Side effects from phenobarbital may occur and include:

  • drowsiness
  • headache
  • dizziness
  • depression
  • excitement (especially in children)
  • upset stomach
  • vomiting

Tell your doctor if any of these symptoms are severe or do not go away:

  • nightmares
  • increased dreaming
  • constipation
  • joint or muscle pain

If you experience any of the following symptoms, call your doctor immediately:

  • seizures
  • mouth sores
  • sore throat
  • easy bruising
  • bloody nose
  • unusual bleeding
  • fever
  • difficulty breathing or swallowing
  • severe skin rash

If you experience a serious side effect, you or your doctor may send a report to the Food and Drug Administration’s (FDA) MedWatch Adverse Event Reporting program online [at http://www.fda.gov/MedWatch/index.html] or by phone [1-800-332-1088].

source : http://all4freehere.com/2009/09/phenobarbital/


I visited my neurologist yesterday for my bi-annual follow up. We had a good discussion about my phenobarbital intake. I was made aware of the facts above. My neurologist concluded our discussion with a strict and stern commandment - THOU SHALL START TAKING THY CALCIUM SUPPLEMENT. "Yes sirree Madam, I will obey", I answered.

One prominent side effect of phenobarbital is it depletes a person's calcium level rather quickly which is why it is important that people who are on this drug MUST take Vitamin D and calcium regularly in order to maintain healthy bones.








Wednesday, December 2, 2009

EPILEPSY AWARENESS BOOTH


I have had the privileges and blessings to meet many people at my epilepsy awareness booth which was closed down two years ago due to family commitment. Mitchell is a special lady I met at my booth. Since we first met, we have become and stayed as good friends till now. Mitchell wrote and shared with me about her first meeting with me.


""Serene, did you know that when we first met, I was actually feeling very nervous. I had had my first seizure at age 41 and it was really difficult for me to accept but I knew I had to learn more about this condition called epilepsy. And then I saw a write up in the paper about a lady who has a booth at the Mall. It says that this lady is an epilepsy activisit and she has this booth to help answer questions about epilepsy. And so thats how I came to your booth.

When I approached you, I was very nervous. I didn't want to reveal too much and yet I wanted to find out as much as I can. I am glad that I went to see you because it was nice to talk to someone who had been there, who understood and who cared enough to share. You gave me brochures and shared freely with me about your own situation and that was the best help of all. Just knowing that I am not alone. I don't know how to thank you so I wrote you a poem instead. I hope you like it.""


You look as Serene as your name

and you greeted me with no shame
You told me that epilepsy is not something to be afraid of
You just have to educate yourself and those you love

Your look is so calming
And you were really caring
You helped me to learn more
I learned that life can go on as before

You made me feel calm and assured
Despite hearing about what you had endured
Having epilepsy is not the end
It need not be something beyond comprehend

Your look gave me confidence to confide
knowing there is nothing to hide
One should learn as much as they can
About medicines and procedures like the scan

You have a face that says its ok everything will be alright
The future can be still bright
As long as you understand
Life is not as fragile as the sand

So love, laugh, live,
You can still have the same drive
Understand, learn and take your meds
There is no need to let life hang on a thin thread

Thank you Serene for being there
For me and others who felt despair
I hope you can continue to help many others
Who needs to help themselves, their brothers or mothers

Thanks again Serene!











Friday, November 20, 2009

Epileptic actress attempts to induce fit on stage

An actress, Rita Marcalo, who has suffered epileptic seizures in private for 20 years is attempting to induce one for a public performance.

Epileptic Rita Marcalo : Epileptic actress attempts to induce fit on stage
Ms Marcalo suffers around two seizures a year even with medication Photo: ROSS PARRY


Ms Marcalo has stopped taking medication ahead of next month’s production entitled Involuntary Dances which she claims is to raise awareness of the condition. But she is facing criticism for putting herself at risk and the voyeuristic nature of the 24-hour event which is being funded by a 13,889 Arts Council grant. People will be invited to film her at Bradford Playhouse, West Yorkshire, where she will use strobe lighting, fasting and raising her body temperature to try and bring about a seizure.

She said: “One of the reasons I am doing this is because epilepsy is an invisible disability. As an artist I am very interested in this idea of doing something in my art that is the opposite of what I do in my life. In my own life it is private but in art I make it public. If you Google or YouTube `epileptic seizures’ you come up with all kinds of mobile phone footage which has been filmed without the patients' consent. Part of me doing this is to address the voyeurism. I am saying, I am choosing to let you do this.”

The charity Epilepsy Action has expressed concern at the potential danger of a patient stopping medication and a spokesman said: “What kind of example is this to other people?”

Details of the stunt emerged at a time when Auvryn Scarlett, an epileptic, was jailed in the US for killing a British couple with his dustbin lorry after failing to take his medication because it interfered with his enjoyment of alcohol.

Ms Marcalo, who directs the Leeds-based dance theatre company Instant Dissidence, suffers around two seizures a year even with medication. The audience, restricted to over-18s, will be provided with sleeping bags and breakfast - but will be woken by a siren the moment she suffers a seizure and can record it on their mobile phones.

Eleanor Barrett, director of Bradford Playhouse, said: “I think it will shock people. I think it's her right to express herself and if people find it distasteful they do not have to see it.”

Philip Lee, chief executive of Epilepsy Action believed many of the charity’s members would consider the performance “inappropriate”.

“I am concerned about the potential danger of a patient stopping their medication to induce a seizure," he said. “Seizures can bring with them the risk of injury from jerking or falling or in the worst cases, death. It is also concerning that the performance could influence others to do something similar. At the very least, the performance should carry a health warning advising people that they should not attempt this themselves.”

Dr Sallie Baxendale, a neuropsychologist at the National Society for Epilepsy, said because seizures were unpredictable, it was unlikely someone would be able to induce on at will even when off medication. She added: “If a seizure happens in front of an audience it is likely to make them feel very uncomfortable. Will this help reduce the stigma which still surrounds the condition? I doubt it."


Source :www.telegraph.co.uk/culture/theatre/theatre-news

""It is so important to keep seizures under control with medication or through surgery. Ms Marcalo is truly dicing with her life by skipping her medication and attempting to induce a seizure in her play. It is my opinion that her intended daredevil and frightful act is extremely distasteful, degrading, disrespectful and embarrassing to people with epilepsy. If she so much wants to be seen in a state of seizure publicly, she can fairly well have some family members record her and post it in YouTube for the purpose of awareness.

I hate to think that her act will be a strong precedent to others. Copycats are everywhere. Epilepsy activists, advocates and epilepsy societies everywhere are preaching tirelessly about the importance of regular medication intake and no thanks to Ms Marcalo who is about to make a public appearance staging herself in a highly revolting act.""






Tuesday, November 17, 2009


MEDIKIDZ FOUNDATION



Medikidz puts complicated medical concepts into simple language, so that all patients (no matter what their age) can understand what is happening inside their own bodies.



How do you go about explaining medical conditions to young children? Do you hide, brush off or put aside efforts in attempts to explain complicated medical conditions to young children under your care? Young children, like adults, also desperately want to know and understand what is happening to them and why they are feeling unwell. We as caregivers must bear the responsibility of enlightening our sick children about their medical condition lest they suffer in ignorance and in silence.

It is unfair and unjust to allow young children to go through sicknesses in the dark. They deserve all the rights to know and understand their illnesses. Medikidz Foundation has designed and created superhero characters in medical comic books to be distributed to kids who are ill worldwide. These medical comic books will appeal to young children and it's contents are pictorial with easy to digest medical information about various types of illnesses.

Please visit Medikidz Foundation at http://www.facebook.com/pages/Medikidz-Foundation/27690241212 to find out more about the Foundation and the range of medical comic books catered for young children. I am looking forward to receiving my copy of epilepsy comic book catered for young children between the ages of 10 - 15 years old.

Medikidz Foundation will be giving away 100,000 HIV books as part of World AIDS Day on 1st December 2009.




Monday, November 9, 2009


HANDLING OUR LIMITATIONS
(November is Epilepsy Awareness Month)


"Jump, survive or die thoughts" flooded my mind at this moment. Too late to look back.


No regrets. Weeeeeeee.........I am gliding and flying like a bird. Greatest feeling in my life.



For this epilepsy awareness month, I wish to share my personal views as a person living with epilepsy for close to 40 years. Living with epilepsy comes with limitations to some extent. No driving. No swimming alone. No climbing heights. No late night parties that deprive sleep. No alcohol consumption. No over stressing myself over everything in life. No parachute jumping. No, no, no.....the list goes on.

Nobody will like to lead a life filled with too many "No" but don't all of us have some kinds of "No" in our lives? Some people have to say no to certain types of food because of allergies. Some will say no to outings because of lack of accessibilities for wheelchairs. Many will say no to luxurious shopping and eating because of tight financial budgets. Saying no is part and parcel of life. Same goes with saying yes.

How successful we are in living our lives to the fullest depend on how we juggle and cope with the "No" and "Yes" in our lives. Are you the type that allows "No" to downgrade your life or do you take "No" as challenges to improve yourself and your life?

I view life as very fragile and unpredictable. Anything can happen in life. Tragedy does not pick and choose it's victims. Two young boys ran and hid themselves under a tree but was struck dead by lightning. A young toddler laughed to her death. A 17 year old student was permanently blinded by acid. A couple looking forward to marriage was killed in a tragic car accident. A pregnant mum had her handbag snatched from her while she was riding a bike. She fell and injured herself seriously on the road. She was sent to hospital but died in a coma.

With so many uncertainties looming in our lives, it no longer bothers or troubles me that I am epileptic. I have learned to accept and cope with whatever life has to throw onto me. Is it worthwhile to worry excessively over the situations and conditions you are in or does it make more sense to take full charge and control of your life. Manage your life as best as you can and be content with whatever life has to offer. Your life is whatever you make it out to be.



EPILEPSY IS MANAGEABLE AND CONTROLLABLE. IT IS NOT AS TERRIFYING AS IT SEEMS.










Sunday, November 1, 2009




LIVING WITH FITS

Wheel Power
By ANTHONY THANASAYAN


Celebrating my son's 21st Birthday


EPILEPSY is a condition of the brain which causes a person to become unconscious. This happens for short periods of time where he or she will move about in an uncontrolled, and sometimes violent, way. Such movements are called “seizures”. They are caused when there is a sudden and involuntary surge of electrical activity in the brain. No one knows why this happens and so there is currently no cure for epilepsy. The person experiencing a seizure goes through a motion that alters the way he or she thinks, acts or feels.

Now, anyone reading these few paragraphs may be terrified of the disease, especially if it were to affect them or their loved ones. Not Serene Low, however, who lives in Bangsar, Kuala Lumpur. The 49-year-old wife and mum of a 21-year-old son is convinced that having epilepsy is neither a death nor life sentence.

“Life is still beautiful with epilepsy,” she told Wheel Power last week. Low is in the best position to know this as she has epilepsy herself, a condition she has lived with for nearly 40 years. In that time, Low has experienced more than 100 attacks.

“The good news is, today, there are many types of anti-epileptic drugs available,” she said.

“With proper diagnosis and the right medication, seizures can be fairly well, if not, very well controlled,” added the prominent epileptic awareness activist whose blog www.epilepsylegacy.blogspot.com won a top health blogger award in February this year. Low pointed out that when taken regularly and as prescribed, anti-epileptic drugs can prevent seizures in a majority of people.

It has been estimated that at least 50% of all patients with epilepsy gain complete control of their seizures for substantial periods of time. Another 20% enjoy a significant reduction in the number of epileptic attacks.

“I have lived with epilepsy for most of my life and I’m fortunate to say my seizures are very well controlled. I would also like to point out that without epilepsy, I would not be the epilepsy activist that I am today. My experience with the disease has helped me stay connected and in touch with other leading epilepsy activists, caregivers and people with epilepsy (PwE) not only in the country but around the world as well.”

Low stressed that being an epileptic does not make her feel different from anyone else. In fact, her epilepsy blog has been a huge plus factor for her. "It has opened a whole new dimension in my life,” she explained. “I have loyal followers and readers, many of whom are PwE who leave inspiring and motivating comments for me. In fact, if not for epilepsy, I would still be the shy and quiet person that I used to be.”

Low had her first seizure as a child after a high fever. Then she stopped having them for about 10 years until they recurred when she was 18. Her last seizure occurred in March.

“Epileptic seizures can be extremely dangerous for PwE, especially when they happen in dangerous places,” explained Low. “Once it happened when I was swimming in Port Dickson where I almost drowned. Another time, I was at a traffic light waiting to cross a busy street and the seizure caused me to fall down on the five-foot way where I broke the whole upper front row of my teeth and needed extensive dental surgery.”

Despite those difficult times, Low said that life has to go on for everybody and especially for PwE. “In my case, I have learned to look beyond epilepsy. The way I see it, the horizon beyond epilepsy is colourful, beautiful and captivating like the artworks of Vincent Van Gogh and his divine paintings. His paintings have inspired me in my art which is one of my greatest interests.”

Low said that although her art may never find a place in art galleries, painting has become a therapeutic pastime for her. Three weeks ago, she submitted 13 paintings to Jim Chambliss, who calls himself “a reformed attorney” after successfully rebounding from traumatic brain injury in 1998. He is currently doing research on the influence of human conditions such as epilepsy and migraine in art at the University of Melbourne and St Vincent’s Hospital in Australia.

Low was delighted that her works were picked as part of a study by Chambliss, entitled Epilepsy and Creativity. Chambliss, incidentally, is also a PwE.


Source: thestar.com.my





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Thursday, October 29, 2009


SEVERE MYOCLONIC EPILEPSY IN INFANCY (SMEI) OR DRAVET SYNDROME


This is a very rare form of childhood epilepsy. Out of 500 children with epilepsy, only one, or at most two, children are likely to have this form of epilepsy. It is also called Dravet Syndrome. The epilepsy starts with seizures which may not initially differ from those associated with feverish illnesses (febrile convulsions).

Generally, this syndrome tends to develop during the second year of life. It may not be possible to make this diagnosis until the child is two, three or even four years old. The seizures begin in the first year of life. They are most often associated with high temperatures and often just involve one side of the body, although both sides of the body may be involved.

The seizures are characterised by jerking rather than stiffness and jerking. They often recur quite frequently in the first year of life. However, at this time it is not easy to differentiate these children from others with febrile convulsions who get better and who do not go on to develop other types of seizure.

During the second year of life of children with SMEI, seizures become more frequent and persistent, are often more obviously partial (involving one part of the body) and no longer occur when a child has a high temperature but at any time of day and night.

In addition to the partial seizures, myoclonic jerks (‘myo’ meaning muscle, and ‘clonus’ meaning jerk) become prominent. Often the children are photosensitive (have seizures brought on by flashing lights). Seizures may also sometimes be brought on by hot environments or hot showers or baths.

The early development of affected children is usually normal but once the myoclonic seizures and partial seizures start in their second year of life, children may lose skills or their developmental progress may slow down. The child’s speech and language maybe particularly affected.



For more information on Dravet Syndrome please visit www.epilepsy.org.uk






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Sunday, October 25, 2009




EPILEPSY MUNCHIES

A Particular Blend Of Love For People With Epilepsy (PWE)





4 cups flour
1/2 cup full of Love
25gm Kindness and Forgiveness
25gm Bliss seeds
2 tbsp Gentle powder
100gm Togetherness
Lovey-dovey oil
Joy butter, sugar and salt

Sift flour. Add water. Mix it together. Add tenderness and set aside for a lifetime. Mix Love with Kindness and Forgiveness. For stronger ties and connections, add Bliss seeds, Gentle powder and a dollop of Togetherness. Add kisses to mixture and knead into firm dough. Allow dough to sit for years and years.

Sprinkle crushed Joy butter, sugar and salt for added Togetherness. Grease baking pan. Mold dough into shapes of your heart. Bake epilepsy munchies in oven till crunchy and aromatic.

Serve epilepsy munchies throughout generations. Whoever eats it will forever remember what epilepsy is all about.






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Monday, October 12, 2009


BLOOD DONATED BY EPILEPTICS NOT ACCEPTABLE


About three over years ago, my late dad was in a critical condition in a private hospital. Doctors informed us that our dad had vomited excessive blood due to a nasty ulcer in his stomach. We were told to return seven (1.5litre) packets of blood to replenish the hospital's blood bank. The doctors had intended to transfuse seven packets of blood into my dad's body to sustain his life.

My siblings and I had blood tests done immediately to determine if all of us can donate blood. Most unfortunately, I was unable to donate blood. The lab medical officer told me that epileptics' blood are not acceptable by hospitals because of fears that epileptics' blood might contain traces and elements of anti convulsant drugs' effects like phenobarbital, epilim, tegretol, keppra, etc. There are worries that recipients of blood donated by epileptics might react to the side effects of anti convulsant drugs.

In this article I do not intend to elaborate in great length on medical issues surrounding blood donated by epileptics. I only wanted to highlight the emotions or rantings of an epileptic, that is, myself.

I was devastated to find out I was not allowed to donate blood for my dad's survival chances. In such a life and death situation involving my loved one, it was most nerve wreaking, upsetting and frustrating for me to be deprived from donating blood. If only I had not revealed on the blood test form that I am epileptic. Maybe in future, I will not attempt to reveal my epileptic condition when I wish to join in my church's annual blood donation day. Or maybe I will not.....Ohhhhhh!!! Epilepsy makes my blood worthless cos it is tainted and contaminated beyond any good use for other people.

To those who are able to donate blood, be grateful and donate whenever possible to save lives. I will never ever have the chance to donate blood as much as I would like to. I feel so lousy.









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Monday, October 5, 2009

Heather Siebens - Epilepsy Activist (Chandler, USA)





I have met SOOOO many amazing people on twitter...naming just a few on here to start...we all need to connect more--talk more out. And get others who aren't--connected!! Amazing blog humbled me big today--Jesus works wonders in all circumstances.




Hi All,

Meet my famous and untiring epilepsy activist friend, Heather Siebens (Hetty) from USA. I got to know Hetty from Twitter. Meeting and communicating with Hetty was one of the happiest things that unfolded to me recently.

Hetty is a lively, bubbly, positive minded person with epilepsy. If you care to view more of Hetty's YouTube videos you will find out from her the various illnesses she is going through in her life. She does not complain about her illnesses but instead advices people to face and accept their illnesses courageously. Adversities are part of everyone's lives.

Hetty not only copes with her own epilepsy condition but she also serves as a great and loving caregiver to her daughter who also has epilepsy. There are chain reactions in life. I am most uplifted by Hetty's constant active participation and contribution towards promoting epilepsy awareness. Likewise, I hope I have been a good source of inspiration to others. And for the people who have been inspired by Hetty and me, I hope you all will on your part be equally uplifting to some more other people.

In a highly stigmatized society that we live in, let us work as an unbreakable united force to eradicate or reduce wrong myths and misconceptions about epilepsy.


HAND IN HAND WE WILL MAKE THIS WORLD AN EPILEPSY FRIENDLIER WORLD


(Hetty can be connected in Twitter @EpilepsyCures or @AliveinMe or you can visit her at www.epilepsycures.ning.com)

Acknowledgement : Thank you very much Hetty for mentioning me in this YouTube video of yours.









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Sunday, September 20, 2009


"Applaudable Efforts in Educating Young Children about their medical condition"


The superheroes fighting disease

By Jane Elliott
Health reporter, BBC News

Skinderella
Skinderella - can morph into a skeleton and knows all about skin and bone

When a 12-year-old patient asked for help understanding his newly diagnosed leukaemia, Dr Kate Hersov knew she had a problem.

"He said 'I can hardly pronounce it, let alone understand it," she said.

Growing increasingly frustrated by what she perceived as a worrying lack of child-focused information, she and fellow medic Dr Kim Chilman-Blair teamed up to produce a series of superhero comics, designed to educate.

"Often when we made a diagnosis of a young child we felt helpless that we had nothing to give the child themselves to understand what we had just told them," she said.




Comic book heroes

"Kim had one particular patient, an eight-year-old girl called Wendy, who had epilepsy and had just been diagnosed. After she was diagnosed she just looked at Kim forlornly and said: 'Is there nothing I can read'?

"There was nothing out there we could give her - nothing for the young patients themselves. So it was out of our frustration as clinicians that we created Medikidz. We knew children needed a place to go to understand the medicine, whether that be the diagnosis, medicines or treatment procedures."

The 'Medikidz' are a gang of five larger-than-life superheroes, designed to educate children through a wide range of media.

One element is an interactive website featuring a virtual world of the human body which the child can explore and the opportunity to create their own avatar (virtual identity) to talk to other children about their condition.

Dr Chilman-Blair said: "Parents sometimes feel that children are too young to understand medical concepts, or that they are better off not knowing.

"The Medikidz programme wants to change this view. We don't sugar-coat serious problems, we provide clear and factual information in a way that is easy to understand and engaging to read. We want the children who use Medikidz to be in control of their illness."


Covering disease

Both doctors want eventually to cover 300 paediatric conditions, but have launched this week with the first ten - including Type 1 diabetes, epilepsy, leukaemia and asthma. In the asthma comic book the newly diagnosed Max Bond is taken on a tour of his lungs, while the superheroes Chi, Skinderella, Gastronomic, Pump and Axon explain how and why his lungs malfunction and the drugs that can be used to help.


Kim Gillberg, health promotion manager at Asthma UK, said the project had the potential to provide a valuable tool to help children. "It's important that children and young people are given options in the way they access health information and we fully support the use of engaging and interactive materials," she said. The essential thing is that the information provided is accurate, positive and empowers children and young people to be able to manage long-term medical conditions, such as asthma, effectively. All the comic books are peer reviewed and have input from play specialists, nurses and often charities.
Pump - a superhero
Pump - has superhuman strength and speed

Dr Chilman-Blair said the first editions would be aimed at the 10-15 age group, but that they also plan a story board format for younger children.

"We chose the graphic novel or comic because it is appealing to children of a wide age group from childhood up to adulthood," she said.

Books cost £5.99 each and are available through the website, but the doctors hope that they will eventually be widely distributed.

"I would like to see a Medikidzs comic book given to every kid when they are diagnosed", said Dr Hersov.

Grenville Fox, clinical director at the Evelina Children's Hospital, where the comics were launched said they could be invaluable. "For a lot of children, spending time in hospital and dealing with their illness can be a daunting experience." he said. This can be made easier for them by providing them with information in a way they can understand and relate to.

"The Medikidz characters and leaflets are a great way for our patients to learn about their bodies and illnesses in a fun and accessible way."



source : news.bbc.co.uk

Friday, September 18, 2009



HUMOUR OF THE DAY

A Lab Report & Cat Scan

A woman brought a very limp duck into a veterinary surgeon. As she laid her pet on the table, the vet pulled out his stethoscope and listened to the bird's chest. After a moment or two, the vet shook his head sadly and said, "I'm sorry, your duck, Cuddles, has passed away."The distressed woman wailed, "Are you sure?" "Yes, I am sure. The duck is dead," replied the vet."How can you be so sure?" she protested. "I mean you haven't done any testing on him or anything. He might just be in a coma or something." The vet rolled his eyes, turned around and left the room.He returned a few minutes later with a black Labrador Retriever. As the duck's owner looked on in amazement, the dog stood on his hind legs, put his front paws on the examination table and sniffed the duck from top to bottom. He then looked up at the vet with sad eyes and shook his head. The vet patted the dog on the head and took it out of the room.



A few minutes later he returned with a cat. The cat jumped on the table and also delicately sniffed the bird from head to foot. The cat sat back on its haunches, shook its head, meowed softly and strolled out of the room.The vet looked at the woman and said, "I'm sorry, but as I said, this is most definitely, 100% certifiably, a dead duck."The vet turned to his computer terminal, hit a few keys and produced a bill, which he handed to the woman. The duck's owner, still in shock, took the bill. "$150!" she cried, "$150 just to tell me my duck is dead!!!

The vet shrugged, "I'm sorry. If you had just taken my word for it, the bill would have been $20, but with the Lab Report and the Cat Scan, it's now $150."



Humour and laughter are the best medication all of us can afford to have because it comes without costs. Besides just taking our anti epileptic drugs daily, always make sure you top it up with an ample and generous dose of humour and laughter. Humour and laughter have the abilities to zap away your negativities, bleach your darkest moments till it turns glaringly white, flush away fear and embarrassment and spruce your mind, health and soul till it becomes cleany clean clean.

I always enjoy good humour and great hearty laughs. My hubby and I were engaged in a game of snooker recently. Both of us had no experience at all with this game. We were so clumsy in handling the long sticks. The only rule of the game was the winner will be decided based on the number of balls entered. My hubby and I posed in all sorts of wierd and funny positions when playing this game. At one point of time, my hubby showed off to me by doing a bend stroke. He bent his body so low onto the snooker table as if he was lying face front on the table. Then with limited vision, he pushed the stick forward. Instead of hitting the ball in front of him, the stick tilted and pointed upward to the ceiling. At that funny sight, I fell instantly onto the floor as if I was having a seizure. I grabbed my chest and tummy and was laughing uncontrollably. I laughed and laughed till all my body muscles ached. I was completely out of strength to stand up on my own. My hubby had to stretch out his hand to me to pull me up from the floor. Both of us continued laughing our hearts out.

So, laugh whenever you can. Laughter has miraculous healing power. Laugh and others will laugh with you. Share a humour and make your laughter contagious. Laughter will lift up your burdens. Laughter will make you forget about almost everything.






Friday, September 11, 2009


Temporal Lobe Epilepsy (TLE) and the Paranormal
By Stuart Ross McCallum (author) Beyond my Control


Many unrelated conditions that can affect human beings often go under the microscope of ‘possible’ paranormal experiences. However, none has paranormal researchers ‘buzzing’ more than temporal lobe epilepsy (TLE). Many sufferers of (TLE) have spoken about their utterly bizarre and compelling paranormal experiences, which has been well documented in medical journals.

Being a sufferer of (TLE) for twenty years, I experienced many paranormal episodes which increased as my condition escalated. At the beginning I had feelings of déjà vu which manifested itself as an aura (simple partial seizure). During an aura I would often return to a village in England set sometime in the 16th Century; the villagers were all joyfully smiling, and some dancing. While experiencing these strange thoughts and illusions, physically, I felt ill with a sick feeling rising up to my chest.

On other occasions I would find myself walking around a crowd of people who I believed I recognized, however, their faces were strangely distorted, and I could hear sinister cackling. As time passed, I encountered a variety of incredibly weird, ultimately bizarre episodes.

As my condition deteriorated, the auras were followed with a (complex partial seizure). At times, the aftermath (postictal state) of these seizures were both deeply disturbing, and frightening experiences. I would enter (postictal psychosis) and lose touch with reality immediately after the seizure passed.

A brief excerpt of one of these events is taken from my book:

One of the early episodes with my menacing postictal state occurred in my stained glass studio. The moment I shouted, "I'm having an aura," our seizure plan was immediately activated, and I was locked inside my studio.

The seizure passed, and I entered my postictal state. In a trance-like condition, I began to aimlessly walk around the showroom, glaring at the display of fragile glass and lighting. After a few minutes I clenched my hand into a fist and randomly lashed out, striking the glass panels. With my fist bleeding, I focused on the doors, kicking them over. As my postictal state was beginning to end, I calmly walked into the manufacturing area and lay down laughing and smiling.

Once I finished laughing, I sat down staring and wondering why my hand was bleeding. I heard Rhonda unlocking the back door. She went straight to the first aid box and attended to my hand. Fortunately my hand wasn't too bad and Rhonda kindly cleaned the cut, and dressed my wound. Feeling ashamed and hesitant, I asked, "What have I done this time?" Rhonda explained the ludicrous rampage, walking around my showroom, breaking glass.....I felt extremely gutted. As always, I had no recollection of the episode once the seizure had passed.

Today, (TLE) is still commonly misdiagnosed, and one of the most misunderstood conditions affecting human beings. Hopefully, by speaking out about (TLE) people will become more knowledgeable about this highly complex condition, and in time sufferers will be quickly and correctly diagnosed.




source : www.beyondmycontrol.net




Please visit www.beyondmycontrol.net. Ross will be most happy to welcome you. It was a great privilege for me to be able to meet Ross in person. Talking and sharing with Ross and reading his book "Beyond My Control" I experienced a great sense of control and triumph over epilepsy by Ross.

Ross tells in his book that although having epilepsy may be crippling and make many things beyond one's control, it is his and our choice to straighten things and put it into right perspectives. With a positive mindset and willingness to pursue full understanding of our epileptic condition, everything will eventually be within our control.

Make sure your epileptic condition is being thoroughly and properly diagnosed even if it means you have to visit more than 3 or 4 neurologists. Cooperate with your neurologist to ensure that you are being prescribed the right type of medication best suited to control your seizures. If different types of medication cannot help in controlling your seizures, you may want to discuss with your neurologist about surgery option.

Beyond My Control is a very inspiring book for caregivers and people with epilepsy to read. It is also a very moving and captivating book for casual readers who will find it hard to resist reading the entire book.



HAPPY READING













Tuesday, September 8, 2009

Masked gang attack epileptic man



police officer

A County Tyrone woman whose son was beaten by masked men armed with iron bars has said she does not know why he was targeted.

The woman, who does not want to be identified, said he was too afraid to return to his house in the Carlton Drive area of Strabane.

The 25-year-old victim suffers from two types of epilepsy.

"They could've killed him. I don't know how anybody can inflict this kind of pain on someone else," she said.

The incident took place at about 2100 BST on Friday. The man was taken to hospital for treatment to injuries to his arms and legs. Police have appealed for witnesses to contact them.


source : news.bbc.co.uk





This world is becoming more and more unsafe to live in. I know crimes are inevitable and happen everywhere. Two months ago, I witnessed a massive group of protesters holding banners and shouting slogans right in the middle of a busy cross road section in Melbourne, Australia. Onlookers had a fright of their lives. I was frightened beyond words. I stood at a far distance to witness the crowd. Traffic from four sides of the roads came to a halt and standstill. Motorists abandoned their vehicles and passengers in trams scrammed for their safety. Police cars and personnels were seen everywhere trying to control the fuming crowd of protesters.

A group of four Sri Lankan men were standing beside me. I asked them if they know what the protest was about. Apparently, the issue was about the rapid rise in the rate of Asians being attacked by locals. The crowd had demanded to see and talk to the Mayor face to face. They wanted the Mayor to accept their memorandum consisting of steps and actions to be taken by the police to restore safety of Asians living there.

A week after the protest, The Star, a leading paper in Malaysia reported the protest held in Melbourne. Two weeks ago, my hubby emailed me from Guangzhou telling me he had read in the local newspaper of more similar protests held in Melbourne and Sydney. My hubby was very concerned about our safety in Melbourne.

One Sri Lankan man told me that his friend had been beaten and clobbered to death because he did not have spare change to give to a group of locals when confronted. Another Sri Lankan man told me that an Indian university student was being beaten mercilessly for not having a cigarette lighter to help light the cigarettes of some locals. The Indian student was sent to a nearest hospital in a comatized condition. The troubled and concerned Sri Lankan men advised me not to be out on the streets too late at night or to be in a midnight tram because of safety reasons.

How safe can I be? Does anyone know? I certainly do not know but the thought of being robbed, attacked and/or raped during a seizure sends chills down my spine. I once read in The Star paper that a grandpa of 76 years old was caught raping his teenage granddaughter who had multiple slerocis and cerebral palsy. Upon further questioning, the convicted grandpa confessed he had been raping his teenage granddaughter for close to ten years. His teenage granddaughter also had two abortions as a result of his raping.

Awareness about the sentiments and predicaments of people with disabilities (wheelchair bound, downs syndrome, parkinsons, alzheimer, cerebral palsy, learning disabled, mental retardation, autistic, etc) and people with epilepsy is so important in our society. It is with knowledge that acceptance will follow. Invoking understanding, loving and caring attitudes in people is a crucial role not only cut out for an epilepsy activist like me but rather it is everyone's duty to do it for the sake of their loved ones, friends and relatives.


Please join me in my activist role and help make this world a better and safer place for everyone to live in.








Monday, August 31, 2009

HAPPY INDEPENDENCE DAY (HAPPY MERDEKA)






Today marks the 52nd year of Malaysia's independence from British rule. I am wondering how would it be like if Malaysia is still under British rule. Would there be a parade including the Queen's Royal Horse Carriage? Would Merdeka Square be named as British Square? Would Malaysians be loyal and patriotic to wave the British flag and shout LONG LIVE THE QUEEN? It is impossible to visualise and imagine but one thing I know and long for is to be able to live my life independently.

Like a nation and everyone else I would love to lead an independent life free from troubling others and asking for favours to be done. Don't all of us love to live a life where almost everything is within our reach and means?

People who drive tend to complain and grumble about congested traffic conditions when someone like me would have to think thrice on whether to risk my life or not in driving cos a seizure behind the wheels could spell death or critical injuries to others and/or myself. People who had to climb stairs as a result of a breakdown of lifts heave and pant and curse at the inefficiency of the building management people in their failure to quickly repair and restore the lifts back to working condition soonest possible. For people with epilepsy, climbing stairs also equates to risks and accidents. Two days ago, I read of a death case of a teenager epileptic girl who had a seizure while climbing stairs and as a result fell and rolled down the stairs to her death.

What I am trying to say here is I am unable to live an independant life on my own completely without any help or assistance from loved oncs. Naturally, I am very blessed to be loved, supported and cared for by my loved ones but then I cannot help feeling a great sense of helplessness during many moments in my life. The feeling of uselessness and constant dependancy drive me to frustrations, anger and resentments.

Ultimately, I need eyes watching out for me whenever possible. Like it or not, this is a fact of life and I have learned to be a better person in coping with my frustrations. Instead of harbouring on negativities I have emerged to be a more positive and stronger person in spirit, soul and faith. I endeavour to reach out to others to inspire them to overlook the "lost independance" and readily accept what life has to offer. Do not ever allow any form of disability to cripple your life. There are purposes in our lives.

Here I am wishing everyone "Happy Independence" and "Live Life To The Fullest" for those who need loved ones' assistance constantly. GOD BLESS.









Thursday, August 13, 2009


First seizure may fuel thinking trouble in kids


NEW YORK (Reuters Health) - Children who are intellectually normal may have problems with language, memory, learning and other thinking or "cognitive" skills at or around the time they experience a first epileptic seizure, according to new research out in the medical journal Neurology.

"Our study highlights the importance of testing children with epilepsy for possible cognitive problems soon after they are diagnosed with epilepsy in order to avoid these issues affecting them later in life, especially if they have additional risk factors," study author Dr. Philip Fastenau noted in a statement from the journal's publisher, the American Academy of Neurology.

Fastenau, from Case Western Reserve University School of Medicine, Cleveland, and colleagues studied brain function and academic achievement in 282 school-aged children with a first seizure and 147 healthy seizure-free siblings.

In this intellectually normal group of kids, 27% of children with just one seizure showed cognitive difficulties at or near the time of the seizure, and up to 40% of those who had additional risk factors showed signs of cognitive problems, the study team found.

A child with four risk factors was three times more likely than seizure-free healthy siblings to have cognitive problems at the first doctor's visit.

The study also found that children who took anti-seizure drugs had difficulties in processing speed, language, verbal memory, and learning, compared to children who did not take any seizure medication.

Children prescribed antiepileptic drugs "should be closely monitored for cognitive problems resulting from the epilepsy drug," Fastenau said.

"Surprisingly," he added, academic achievement in these children appeared to be unaffected around the time of the first seizure. This suggests that "there is a window early in epilepsy for intervention to avoid hurting a child's performance at school," the researchers say.

In a related editorial, Dr. David Loring, of Emory University in Atlanta, makes the point that, "Because this study found cognitive problems at the time of the first seizure or soon after, it provides strong evidence that these cognitive problems can be attributed to underlying brain abnormalities that lead to the epilepsy, rather than from extended exposure to epilepsy drugs or the effect of numerous seizures."


SOURCE: Neurology, online August 12, 2009 (www.reuters.com)





Sunday, August 9, 2009

TORN BETWEEN TO BE WITH SON OR NOT


Source : Camden News


Social services held emergency talks on moving an art historian to
secure accommodation amid fears for his safety just months before he
was killed by his son, the New Journal has learned. Professor Lee
Johnson, 81, was beaten up and left to die in a house fire started by
his son Michael in July 2006. Both men were rescued from the blaze but
Professor Johnson died from shock in hospital. The tragedy that
unfolded was described as "avoidable".

The council people did what they could to protect Professor Johnson,
including calling the police in for advice. But Professor Johnson
wanted to continue to see his son alone. Neither the council nor the
police could stop that.

Judge Beaumont said it was "necessary for the protection of the public
from serious harm at Michael's hands" that Johnson be held under the
Mental Health Act. At the time of the offence he was suffering from a
mental illness of a nature that makes it appropriate for him to be
detained in a hospital, said judge. The drugs and his epilepsy brought
him to this act. This tragedy has arisen as a result of the delusion
within Michael Johnson's mind after what was a solid relationship, and
under no normal circumstances would he dream of harming his father.

Dr Peter Fenwick, one of the country's leading epilepsy experts, said
Keppra, the drug Johnson was being prescribed, was controversial. It
is well known for three major effects, he said. It is extremely good
for seizure cessation. Secondly, it makes people very irritable and
thirdly it can induce encephalopathy (brain disease) and from that can
arise psychosis. A number of my patients do develop psychosis.

(Definition of psychosis)
In the general sense, a mental illness that markedly interferes with a
person's capacity to meet life's everyday demands. In a specific
sense, it refers to a thought disorder in which reality testing is
grossly impaired.

This piece of tragic news reminded me of my Penang friend. In an
epilepsy support group meeting, she related of a nightmarish event
that unfolded in her home. Her teenager son who was epileptic had a
seizure one afternoon. Knowing her son's unexplainable violence during
a seizure, she hid herself in her bedroom. Little would she expect her
son to dash into her bedroom with a chopper knife. She had known very
well from her son's past seizures that windows in her house would be
smashed and furniture would be broken. But to attack her with a
chopping knife was beyond her imagination.

She screamed for her life and yelled hysterically for help. In her
attempt to escape from her "unintentional" killing son, she suffered
slashes and cuts. She dashed into a storeroom and locked herself in.
She waited till silence was restored and heard her son groaning in
pain. She knew by then his seizure had stopped. She walked out of the
storeroom and found her son lying half conscious on the floor of the
kitchen.

She called the police in immediately before her son regain full
consciousness. She also called an ambulance for herself. Her son was
being detained in the police lockup. She survived the fatal killing
act coming from her epileptic son and was so traumatised that she
never wanted to see her son again. She told us in tears drenching her
blouse that it was extremely heartbreaking for her to see her son end
up in a hospital and eventually, in an asylum, permanently.

I empathised my friend's situation and as a mum of a son I was also
very heartbroken to hear such a tragic piece of news. Epilepsy robbed
her of her only child. Because of all the harrowing experiences my
friend had gone through with her son, my friend was determined to
share the moral of her story with all caregivers - ALWAYS CARE AND
LOVE YOUR CHILDREN FOR WHO AND WHAT THEY ARE. THEY ARE PRICELESS.
UNLESS THEY HAVE COMMITTED ACTS OF KILLING, DO NOT WALK AWAY FROM
THEM. VALUE AND TREASURE THEM ALWAYS BECAUSE YOU NEVER KNOW WHETHER
YOU WILL LOSE THEM OR NOT OUT OF EXPLAINABLE AND ACCEPTABLE HEALTH
PROBLEMS.





Sunday, August 2, 2009

IMPORTANCE OF SIGNAGES




What do you do when you are in an unfamiliar airport, train station, hospital, Immigration office or a new place you have never been to? You look out for signages. Our natural instincts are to look out for signages that can direct and guide us to spots , areas or streets that we are looking for. Lack of accurate and prominent signages spell calamity and give us a frightening and worrying sense of being quite lost and helpless. In such a case, we resort to asking people for directions.

Earlier this year, my son and I made a trip to a video arcade. We played and moved from one game to another until I stumbled upon the above signage. The signage had several warnings and one of it is has to do with people with epilepsy. It stated that if you have been diagnosed with epilepsy or experience seizures or dizziness with video product, you must consult a physician before playing. After taking a snapshot of this signage we ended our arcade trip as we are aware of the potential risks involved for both of us.

Imagine if there wasn't any warning signages for people with health risks especially people with epilepsy? A lot of young kids have their first seizures in video arcades. Parents are caught off guard and later regretted having brought their children to such places. I wish it is a mandatory Act in all countries for operators of video arcades to display prominent health warning signs for everyone to take note.





Saturday, July 18, 2009

ART FREES THE MIND AND UPLIFTS THE SOUL


Vincent Van Gogh is associated to art and epilepsy. I adore Van Gogh's paintings. I can spend countless hours looking, admiring and studying Van Gogh's paintings. Every time I look at Van Gogh's paintings I get a different feel. His paintings are full of life and colours. His painting techniques and strokes depict and describe who he is and how he is in character and attitude. Reading materials written by art historians about Van Gogh only deepens my understanding of this world reknown artist and reinforces my liking for art.

Art is therapeutic. Art heals my wounds, hurts and also helps me forget negativities. Art nourishes my soul because every time I finish a painting I am in a gratifying and thankful state of mind. I am deeply thankful to God for granting me the gift of art.

As a young girl I had a great liking for art. I left school hoping to pursue a degree in Fine Arts. Financial situation did not permit me to ensue my hope of studying my dream degree. I worked and studied part time with the hope to obtain a different degree for career advancement. In the weekends and spare time, I will visit my favorite Art Shop (Venus Art Shop) to source for art materials.

I browsed through lots of art books in bookshops to read and understand more about different modes of painting. I also enjoy spending my time in art galleries. Whenever I am in art galleries I lose track of time and meal hours.

I am a self taught person who loves art. Friends and family members have encouraged me to enrol for art courses now which I no longer wish to do so. I only want to paint with the talent that God has given and I believe it is by this way I am able to maintain my own style, creativeness and originality in my paintings. I aspire only to paint in my own "SERENE" way.

It is my aspiration and dream to have my own solo Charity Art Exhibition one day. I hope I will be able to sell my paintings to raise funds in aid of poor and needy PWE (people with epilepsy).








A series of desert scene painted in August 2008


I encourage everyone to pick up a brush and paint. Start painting and feel and experience the magical wonder, greatness and positiveness that are derived from painting. By painting, you are in control of your state of mind. Your emotions and heartfeelings will flow and move with your brush. One need not be an artist in order to paint. Every painting no matter whatever the outcome is your personal creation and a state of the art piece. A painting speaks of a thousand words.