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

The superheroes fighting disease

By Jane Elliott Health reporter, BBC News

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 - 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

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.

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

Masked gang attack epileptic man

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.