Saturday, June 28, 2008



GOODY BAGS IN THE WAITING


I was waiting for good news to be announced in our local daily, The Star on 20th of June. Alas, the first of its kind news was made official in the paper.

The Star’s “Wheel Power” columnist, Anthony Thanasayan was elected as one of five councillors with disabilities by the new government in Selangor, Malaysia. Senior and disabled people had waited too long for such good news to come about.

The move by the Selangor Government to finally include disabled persons into the local council on an equal status is a history making effort since the birth of our nation.

I was swept off my feet the first time I met Anthony. His resounding statement echoes in my mind constantly. He said, “my mission is to be of service to people with all types of disabilities”. A man of his words he had highlighted social and health issues relating to people with handicap, parkinson’s disease, cerebral palsy, mental disabilities, epilepsy, hearing impairment, blindness, alzheimer’s disease and learning disabilities in his Wheel Power column.

Anthony indeed is a remarkable and exceptionally outstanding disabled person who has served and will continue to serve elderly and people with disabilities in his relentless ways.

The appointment of Anthony together with four other disabled councillors will certainly light up the dark tunnel of every person with disability.


BRIGHT DAYS ARE HERE TO STAY



Friday, June 27, 2008


FIREWORKS AND EPILEPSY

By : Szymanski

As we come to that fine old 4th-of-July tradition of fireworks blowing things up so there are pretty colours in the sky, we here at the Foundation (well, actually, in my department) have received some calls from reporters looking for information on photosensitive epilepsy and fireworks. After all, we know video games and some Web sites can trigger seizures -- but can fireworks?


By : Damon

I read your question about the fireworks, and I can answer that question for you. Cause I can't watch fireworks up close anymore cause I would end up having a Gran-Mal Seizure about the time the grand finally would start. It all started about 2-3 yrs ago while I was at a Labor Day airshow/ fireworks show. I was doing great all day that is until the fireworks started. It was the last i remember cause when I basically came to, I was in the hospital E.R with iv's hooked up in both my arms. I was told by my family and the Dr that I had a seizure. Then the following year at the 4th of july fireworks I had another seizure but my family said it was just a small seizure so nobody called an E.M.S. Then I just had another seizure last month while I was participating in the Walk For Life Relay. They had a small fireworks display and not long after the show started I had a Gran-Mal which come to find out from my girlfriend & a couple of nurses that was there said I had at least 4 seizures back to back. And the next thing I remember I was in the hospital with iv's in both my arms. After a while the Dr. came in and basically told me to stay away from fireworks or to hide my eyes and not look directly at the fireworks otherwise I will just end up back in the E.R again. So now I no longer go to see fireworks, or concerts cause of the different lights they have. and if I want to see fireworks I'll have to watch em from a distance.


By : Serene

My husband and I watched a play entitled Beauty And The Beast two nights ago. We enjoyed watching the play very much except there were many moments when I had difficulty keeping my eyes open. There were strobe lights and flashing lights at many parts of the play. I closed my eyes during such moments but because of the high intensity of the bright, flashing and flickering lights in the dark convention hall I had great discomfort in my head. The play ended and I was relieved I did not have a seizure triggered by the lighting effects. I have never had a seizure triggered by bright, flashing and flickering lights before but I am not going to take any more chances after watching Beauty And The Beast play. Having read the link below I know how to play safe with lighting effects in the future.

Source : epilepsy.com

Thursday, June 19, 2008

TREATMENT OPTIONS : VAGUS NERVE STIMULATION


Vagus nerve stimulation therapy is another form of treatment that may be tried when medications fail to stop seizures. It is currently approved for use in adults and children over the age of 12 who have partial seizures that resist control by other methods. The therapy is designed to prevent seizures by sending regular small pulses of electrical energy to the brain via the vagus nerve, a large nerve in the neck.


The energy is delivered by a flat, round battery, about the size of a silver dollar, which is surgically implanted in the chest wall. Thin wires (electrodes) are threaded under the skin and wound around the vagus nerve in the neck. The battery is programmed by the health team to send a few seconds of electrical energy to the vagus nerve every few minutes. If the person with the system feels a seizure coming on, he or she can activate the discharge by passing a small magnet over the battery. In some people, this has the effect of stopping the seizure. It is also possible to turn the device off by holding the magnet over it.

Side effects of VNS therapy are mostly hoarseness and, sometimes, discomfort in the throat. There may be a change in voice quality during the actual stimulation. Although complete seizure control is seldom achieved, the majority of people who use VNS therapy experience fewer seizures. In some its effectiveness increases with time, and patients report an improved quality of life. As with surgery and the ketogenic diet, it will almost always be necessary to continue anti-epileptic medication although the patient should be able to take less medication than in the past.

Source: epilepsyfoundation.org

Monday, June 16, 2008

Innovative epilepsy treatment a godsend for Rocklin pastor



John-Paul Meyer was on a quick stop for beer nearly 10 years ago when he collapsed in a market from a catastrophic seizure. When he came to, there was blood everywhere – from a cut on his head. Paramedics were on the scene. Several days later, the 52-year-old Meyer was diagnosed with epilepsy.

Meyer, a pastor for 22 years at Holy Cross Lutheran Church, which he help found in Rocklin, was dumbfounded. Until that first grand mal seizure in 1999, he said, he was never aware that he had experienced a seizure. "I thought I had blacked out for a few minutes. It was 35 minutes," he said.

Today Meyer is far from the helplessness and fear of that night in the market. Seated in the tidy living room of his Rocklin home, he's a picture of calm and vigor. After the diagnosis, years of medication failed to control his convulsions. In 2005, the pastor tried a cutting-edge treatment called vagus nerve stimulation therapy. He says it has controlled his seizures.

Epilepsy is a neurological disorder that affects 3 million Americans. People with epilepsy have recurrent seizures that vary in severity – full-body convulsions or clouded awareness and uncontrolled movements – depending on whether parts or all of the brain are involved.

Neurologist Robert Burgerman of the Neuroscience Institute at Sutter Health Sacramento Sierra Region, said small seizures are more common than large ones. In some cases, people may not even know they have epilepsy. "They lose time and are unaware it even occurred," he said.

A tall and trim man with a mop of sandy-brown hair, Meyer realized after his epilepsy diagnosis that he had been experiencing small seizures throughout his life. "My wife would say I had very poignant pauses in my sentences," he said of seizure activity when he would momentarily blank out in the middle of sentences.

Small seizures also caused him to read the end of sentences before the beginning. During church services, as he read the Bible, he would joke: "Don't be thrown if I read in the wrong order, it will still mean the same thing."

Eventually, Meyer's small seizures erupted into one that rocked his entire brain. "It's like having lots of small tremors and then a big quake," he said. While on medication that caused severe side effects, Meyer said he had three more grand mal seizures. He was referred to a neurologist who suggested vagus nerve stimulation therapy. The therapy centers on an implant, which lies near his heart, he said, pointing to the area underneath his shirt pocket. A threadlike wire just below the skin travels up the left side of his neck to the vagus nerve. The wire creates a slight bulge in a fold of skin. Every three minutes, the device sends electrical impulses to the vagus nerve for 30 seconds.

The long vagus nerve – one of 12 pairs that originate in the brain – provides both motor and sensory functions to a wide variety of the body's parts. It also brings sensory information back to the brain. Stimulation therapy is thought to affect some of its connections to areas in the brain that are prone to seizure activity.

"I am pretty much seizure-free," Meyer said. "I've had three seizures over the last three years." Sutter's Burgerman, who performed the implant procedure. said Meyer responded well. Each time Meyer senses trouble, he swipes a beeper-sized magnetic device over his chest, which "interrupts the seizure." The magnet resets the implant. Meyer said the ability to stop a seizure is a "powerful feeling."

"Epilepsy made you feel like you were a victim of the disease. Powerless," he added. "There was no control. I could not plan on anything, really anything, being normal." Because the treatment can affect the vocal cords, so the pastor's voice can abruptly go from booming to soft and high-pitched, as the implant cycles on and off. There's also the occasional shortness of breath, Meyer said, but it has not affected his ability to cycle or play tennis.

"I'm a French horn player in the Capital City Concert Band, and it hasn't interfered with that," he said.

Source: sacbee.com

Sunday, June 15, 2008






Wishing Happy Father's Day to everyone who are fathers, fathers to be, grandfathers, stepfathers, god fathers and great grand fathers.

Wednesday, June 11, 2008


GOODBYE EPILEPSY ???


I was born in the Chinese Zodiac Year of The Cute Rat.
Come December 2008 I will have achieved a good
record of 4 years free of seizure. I am praying
very hard for a cure of my epilepsy. If I am
cured I will offer my best piece of mozzarella
CHeeSe to GOD in thanksgiving.





Wednesday, June 4, 2008

Drawn on 27 March 1992


THOUGHT OF THE DAY

If you don't go after what you want, you'll never have it. If you don't ask, the answer is always no. If you don't ever try, you will never know. If you don't step forward, you're always in the same place. Are you someone who likes to be in the dark? Step out into glorious light. In the light you will see and know that there's so much more to life than you thought it to be.