EPILEPSY ID

We live in a world where having our own ID (Identity Card) is compulsory. The purpose of an ID is to allow people to identify us where ever we are. In my 30 over years of having epilepsy, my ID had being a crucial identification mode for medical people to obtain information pertaining to my spouse. There were numerous times when my husband had received calls from hospitals informing him of my admittance because of epilepsy.

Apart from carrying an ID, it is essentially important for PWE to carry an epilepsy ID as well. We all know it is very time consuming for medical people to retrieve official information about us from our National ID Registration Office and hospitals where our medical records are being kept. In order that medical people can attend immediately and appropriately to us, time is of the essence. An epilepsy ID instantly provides information such as phone numbers of our next of kin, the types of medication we are taking, the dosage of our medication and the names and telephone numbers of our neuro doctors.

My membership card with Epilepsy Foundation of Victoria,
my epilepsy ID card and my name card

CARRY AN EPILEPSY ID NOW. IT SAVES LIVES.

If you have difficulty in applying for an epilepsy ID, make yourself your own epilepsy ID. Be creative and artistic about your epilepsy ID. Cut a blank card the size of a credit card. On one side, design, draw, sketch and paint your own unique designs on it. Leave a blank space in the center of your design. Write the word EPILEPSY IN BOLD. On the reverse side of your card, draw lines for you to fill in your required particulars. Keep this card in your purse or wallet always. To keep the card in good condition, laminate the card. Constantly update your card if there are any changes over time.

Footprints in 'The Epilepsy Legacy'... ...come join me

Please click on the image to read details

GREAT IS THY ACT CLARA

From my experiences as an epilepsy activist, I had come across too many people who are not the least bothered or interested to know anything about epilepsy. Mentioning the word "epilepsy" turns people away. Many pleasant, polite but uninterested people obliged by listening to me talk about epilepsy. Their faces looked blank. Amidst these people, there are also the small groups of interested people who expressed keenness in knowing more about epilepsy. They are either people with epilepsy themselves, caregivers of PWE or non epileptic people who have a golden heart in ensuing medical knowledge on a general basis.

One person I know who is non epileptic and has a sincere interest in engraving her footprints permanently alongside mine in my epilepsy journey is Clara. Last April, Clara had told me of her kind intention to participate in a run to help raise funds in aid of people with epilepsy. I was very much taken by Clara's charitable deed. Clara is a loyal follower of my blog. With the understanding she had acquired about epilepsy from my blog, Clara is determined to help me spread words about epilepsy as well as extending her help to PWE in her own unique ways.

On the 28th of June, last Sunday morning, I met up with Clara at the Federation Square, Melbourne, Australia, to see her run off with hundreds of participants who had joined in the Annual Melbourne Run. In her bid to finish the run, Clara had successfully gathered a handsome sum of Aud450 in aid of Epilepsy Foundation of Victoria. Thank you very much Clara for your noble deed.

I will continue to work harder to promote epilepsy awareness because great is my inspirational reward that comes from loyal followers like Ted from Red Bank, New Jersey, USA, Clara from Melbourne, Dodit from Indonesia, Ross from Melbourne, Evelyne from Malaysia, Ben from Taiwan, Jackie from Malaysia, Keimi from Hong Kong, Pauline from Melbourne, Rose from Phillipines, Dr Marshal Mo from Taiwan and many more other motivating supporters from around the world.

To everyone, especially people with epilepsy, SPREAD YOUR WINGS AND FLY HIGH - REACH OUT TO THE WORLD, TOUCH AND BE TOUCHED.

On the left, my son Edmund and Clara in the center

Clara walking with participants to the starting point of the Melbourne Run

Clara with her medal

High-Tech Imaging May Lead to Development of New Therapies


(HealthNewsDigest.com) - Researchers have discovered brief moments of oxygen deprivation prior to an epileptic seizure in the areas of the brain where the episodes occur. Detecting dropping oxygen in the tissue -- called hypoxia -- may eventually lead to the development of therapies that recognize these events and prevent the seizures from occurring. Experts have published results in three different peer-reviewed journals describing their observations in brains of rats and humans.

Using special high-resolution video cameras, Dr. Theodore H. Schwartz, a neurosurgeon at NewYork-Presbyterian Hospital/Weill Cornell Medical Center and his team, including Drs. Hongtao Ma and Mingrui Zhao, are able to capture visible changes in blood flow inside the brain. Hemoglobin, the molecule in the blood that delivers oxygen to tissues in the body, changes color from dark to bright red when oxygenated, allowing scientists to see visible changes in oxygen delivery to the brain in real-time. Dr. Schwartz believes that oxygen deprivation to the same areas over time may explain the brain damage and increasing severity of seizures in epileptic patients.

Dr. Schwartz, who is also a professor of neurological surgery at Weill Cornell Medical College, says in the future a device that can detect hypoxia in the brain, and then deliver a drug to prevent epilepsy, may be able to counteract and prevent a seizure before it happens. The idea is similar to a pacemaker that prevents irregular pumping of the heart.

The three studies have recently been published in the Journal of Neuroscience, the Journal of Neurophysiology, and the Journal of Cerebral Blood Flow & Metabolism.




source : www.healthnewsdigest.com

Epileptic driver who had seizure at wheel jailed

THE Epilepsy Foundation has slammed an epileptic driver who ignored medical advice and killed an unborn child.

Steven Harris's decision to drive when he regularly suffered seizures and was banned from the roads cost the life of Max James, who was stillborn in December 2007. Harris, 40, crashed into Kate James's car in a Broadmeadows car park, the impact killing her unborn baby 27 weeks into the pregnancy. He was today jailed for at least two years for negligently causing serious injury to Ms James and driving while suspended.

Epilepsy Foundation of Victoria CEO Graeme Shears said Harris's behaviour did little to help ease the stigma of an already misunderstood condition.

"People with epilepsy already suffer a lot of stigma and prejudice because people don't understand epilepsy well," he said.

"We don't condone the behaviour of Steven Harris and we strongly advise people not to drive if they are suffering seizures." Mr Shears said loss of mobility was a major issue for many people with epilepsy and there should be more support for them.

""Whilst a lot of PWE are able to cope very well with mobility problems in their lives, a lot of PWE do not cope well. One of my epileptic friends, John, used to frequently quarrel with his wife. He is epileptic and does not drive. His wife has to walk for an hour every morning to get to the bus stand to catch the public bus to go to work. His frustrated wife used to grumble and complain a lot about tired of walking everyday. It came to the time when his two young school going boys had to start schooling.

John said, "I will have to walk with my sons to school which is impossible because the nearest school is located at least a 45 minutes' drive from his home". John also commented that his life is totally wrecked without his own mode of transportation.

I highlighted John's plight to some of my friends. We agreed to get John a motorbike. With a bike, John's family life improved tremendously. The only thing is I had to keep reminding John not to go on the bike whenever he has an aura. John told me there were several times when he had auras while on the bike. For his own and other peoples' safety, he quickly park his bike by the roadside and lie down on the roadside until the auras are over.

People tend to ask me how I cope with my mobility problems since I do not drive also. My reply is always my hubby, my siblings and my good friends. My hubby switched from a routine office job to work from home so that he can send our son to school as well as send me to the supermart and other places that I need to go. My siblings and good friends will have to turn up at my house to pick me up for appointments with them.

Of course, there were often times when my hubby is unable to offer me lifts. During such times, I will just have to postpone appointments or cancel appointments. The worst case is to dial for a cab which is not the best option at all in the country where I live. There have been too many frightening stories being told of our cabbies. If it is possible, I will walk to my destination.

On a positive and humorous note, I often tell friends I have two car keys to my own cars. So, mobility is never a problem. They always look stunned beyond belief. After that, I will explain to them that my two car keys actually mean my two "KAKI". In my national language, kaki means leg. In other words, I have my pair of legs to walk to any where I want.

If you are epileptic and know you are unfit to drive, please do not go against the rules and insist on driving. If you do, then you are doing so for selfish reasons, not bearing in mind your own and other peoples' safety"".

REVIEW OF “BEYOND MY CONTROL”

RATED

Stuart Ross McCallum shares a true account of his battle with epilepsy - beginning with the peculiar sensations he experienced as a teenager that led to his diagnosis and concluding with his eventual recovery from a temporal lobectomy.

McCallum vividly describes his twenty-year journey of living with epilepsy and how this unpredictable disease has not only impacted his life but the lives of everyone around him.

Beyond my Control is an inspirational book for the millions of people who suffer from this insidious condition, and family and friends who are directly affected.

Beyond my Control provides an honest, emotional look into a highly complex and often misunderstood condition and how one man's perseverance helped him break through the darkness to find hope on the other side.

A powerful (true story) of hope and courage, for anyone struggling.

Photo taken with Ross in front of Melbourne Art Centre

Hi Ross,

The minute I got your book "Beyond My Control" it was truly beyond my own control to put the book down. I was glued to your book. Your book tells of confusion, bitterness, humour, life risking decisions, family's care and love for you, especially your wife, Lisa, and made a poignant point to readers that life is still beautiful with epilepsy. Life does not end with epilepsy. Having epilepsy is not a life sentence. There is always hope, and we should never give up on our hopes, even if we have braved through countless stormy and turbulent years in our lives. With an unceasing zest to conquer and defeat the invisible enemy inside us, we will excel in our lives beautifully and meaningfully.

"Beyond My Control" is definitely a "Must Have" and a"Must Read" book. Ross, thank you so much for sharing your meaningful and inspiring story with the world. You have successfully triumphed over epilepsy. You are a great living testimony of how a remarkably troubled epileptic life has been transformed into a sweet, serene, and beautiful life.

Warmest Regards,
Serene Low
A person with epilepsy and an epilepsy activist



"" I was very pleased to have the opportunity to meet up with Ross on 19th of May 2009 in Melbourne. Ross has a warm, bubbly, charming, pleasant, courteous and humorous personality. Talking to Ross for the first time was like talking to my good old pal. We had a great time of sharing and exchanging of our epilepsy stories. If you are struggling with epilepsy or you are someone who likes to have a good read in an hour’s time, I encourage you to visit www.beyondmycontrol.net for more information regarding Beyond My Control””.

DISCRIMINATION

Photo taken with my Chinese friends in Xiamen International Convention Centre

We all know that discrimination exists everywhere. Whether we are in developed countries, underdeveloped countries or developing countries, discrimination affects us in one way or another. A society without discrimination is a dream society.

It is bad enough to be discriminated by society but then to be discriminated by one's own family members is intolerable and inhumane. People with epilepsy (PWE) by and large face a lot of discrimination from family members as well as relatives and friends.

I was at an epilepsy congress in Xiamen last year and I had the opportunity to get to know new epileptic friends. For the three days I was in the congress I had noticed that China delegates, a big group of them, had kept to themselves and no delegates of other nationalities had approached or mingled with them. Sensing some elements of discrimination, I opened up myself to the China delegates.

Talking to the China delegates was the best thing I had done in the congress. They were such warm, pleasant, kind and friendly people. As soon as I apologised for my poorly spoken Chinese language, all barriers were broken free. Communication was free flowing from my Chinese friends. During and after our final night's dinner at the convention hall, my Chinese friends were crossing tables to my side to talk to me and my favourite part of the talking was listening to their epileptic stories.

Liu Xiao Ying from Shanghai had this to share with me.


""Dear Serene,

Thanks a great lot for sending me our photos. These days, I have constantly been thinking about your questions. Yes, our Chinese PWE were too shy to talk to other delegates and merge into other groups. The English speaking delegates avoided us. My epileptic friends are confronted with more discrimination from the society, the people and even their own families. Social education regarding epilepsy is a tough job for our Chinese epilepsy self help group. We are all green hands and your experience can be helpful for us.

Best regards,

Xiao Ying
Shanghai ""


Is it fair to discriminate PWE for having a condition that they did not ask to have? Whenever, you look down or discriminate a person based on some shallow knowledge or the physical outlook of a person, it really means that you have to first see the speck of wood fray in your eyes before you begin to judge and discrimate others.

Respect and honour one another for God made all of us to be on par. No one is far more inferior than another. No one deserves and no one should.