Fighting Epilepsy can have successful results

After spending most of her life being told to keep quiet about her late brother's seizure disorder, Michelle Henderson, founder of the Robert O. Henderson, Sr. Epilepsy Foundation, is now making some big noise. Not only was her fledgling foundation's first memorial walk a striking success, she has also set plans in motion for an epilepsy awareness and support group for this September.

Henderson was initially worried that the foundation's first memorial walk, which was held this past Oct. 22, would have little attendance. However, her fears were quickly diminished that Sunday as 138 participants showed up, including students from Swenson Skills Center, Lincoln High School, Jenkintown High School, and Archbishop Ryan High School.

"For its first time, 138 people was a great turnout, especially for a local foundation like us," Henderson said of the walk, which was held at Industrial Park at Red Lion and Academy Roads.

Epilepsy is a chronic neurological condition characterized by periodic seizures, ranging from small jerky petit mal seizures in the hands or face muscles while the individual is conscious to the violent grand mal seizures that involve strong shaking over the entire body while the individual is unconscious. According to the World Health Organization, over 50 million people in the world today suffer from epilepsy.

Henderson's brother Robert was one of those people. Robert was forced to keep his condition secret his entire life due to the stigma it carried. On Oct. 8, 1993, he died after a particularly violent seizure which caused him to flip out of his bed and receive a cervical fracture.

After her brother's death, Henderson became a vocal proponent of epilepsy awareness, education, and research.

"The walk, I think, was more successful than I had ever hoped for." She added. "I was thrilled and honored that so many came to participate."

On Monday, Feb. 19, Henderson presented the proceeds from her foundation's first walk to the Epilepsy Foundation of Eastern Pa. The money will help fund a scholarship for an epileptic child interested in attending the Epilepsy Foundation's Camp Achieve.

"We're always very happy to receive contributions," said Jeanette K. Chelius, executive director of the Epilepsy Foundation of Eastern Pa. "This will allow another camper to learn more about and better understand this disorder. Many of these children have never slept over at a place other than their own home. So this is an extraordinary experience for these kids."

"We're thrilled to fulfill our promise to our walkers," Henderson added. This year's memorial walk will be on Oct. 21 at the same location-Industrial Park.

"This year our efforts are going to go to Citizens United for Research in Epilepsy (CURE), an organization that is dedicated to research," Henderson said.

CURE is a volunteer-based nonprofit organization whose primary mission is to raise funds for research toward a cure for epilepsy. The organization also works to raise awareness and educate the general population about the realities of this highly prevalent seizure disorder.

Henderson will also being holding an epilepsy awareness and support group on the second Monday of every month beginning on Sept. 10 at Frankford-Torresdale Hospital.

"It is for those with epilepsy, their family, and all interested in learning more about epilepsy," Henderson explained. "It's a way to raise awareness and give support to all of these different types of people."

Henderson said that the support group will include appearances from various speakers knowledgeable in epilepsy, whether they are doctors or activists.

Despite these initial successes, Henderson said her foundation is still in need of some essential resources.

"We'd like to get some used laptops from businesses in the area that would like to donate them," Henderson said. "We want to use these computers as a way to help educate people more about epilepsy during our various events, such as the support group."

For those interested in contributing used laptops or a financial donation to the Robert O. Henderson, Sr. Epilepsy Foundation, please contact Michelle Henderson at (215) 637-5370. For more information on the foundation in general, please visit http://mysite.verizon.net/vzetjfur/index.html.

Woman dies from seizures

A 34-year-old Austin woman began having seizures and died Wednesday after being arrested on assault and drug charges, according to the Travis County sheriff's office.

Sheriff's officials said Austin police brought Niqa Deshan Gant to the Central Booking Facility about 2:20 a.m. on charges of assault and drug possession.

"While waiting for the booking process to begin she displayed some odd behavior and was taken to the medical section of the booking facility," the sheriff's office said in a written statement. "She started having seizures and medical staff notified the Austin/Travis County EMS, who transported her to Brackenridge Hospital."

She was pronounced dead at 3:44 a.m., the statement said.

The Travis County Medical Examiner's Office conducted a preliminary examination and found no signs of injury or foul play, the sheriff's office said. A final report will be released after toxicology results are received.

Sheriff's internal affairs investigators and the major crime unit will conduct investigations into Gant's death, which is routine after an in-custody death, the sheriff's office said. This is the first in-custody death in the Travis County Jail in 2007.

Rugby legend to go through surgery to control seizures

RUGBY league legend Wally Lewis will have a delicate four-hour neurosurgical operation in a Melbourne hospital in an attempt to control his epilepsy.

The operation, to be performed by Associate Professor Gavin Fabinyi, is due to begin in the Austin Hospital about 2pm. During the operation, Prof Fabinyi plans to remove a 5cm long and 3cm deep slice from Lewis's brain. Lewis, 47, has spent eight days at the hospital wired to monitors and having seizures induced to see whether the last-resort surgery is possible and if it might work.

He has been under the care of neurologist Professor Sam Berkovic since late last year when he began having problems presenting the evening sports report on Channel Nine in Brisbane. The first indication came during the November 16, 2006, 6pm news broadcast where Lewis previewed the sports segment, but was not onscreen when the program returned from an ad break. A similar event occurred on November 30, when Lewis appeared onscreen and began to read the autocue, saying "Good evening" before seeming distressed.

Following those incidents, Lewis was given medical leave for the rest of the year and on December 1, he revealed that he suffered epilepsy. His wife Jacqui says the former Queensland State of Origin coach and captain was "very, very positive" about the operation. "Everything we do now is going to be a winner," Ms Lewis told the Nine Network. Prof Berkovic said the possibility of success in the operation was "high, but it's not 100 per cent".

"About 80 per cent of patients either get complete relief of their seizures or a very considerable reduction," he said. "Surgery like this can affect memory and speech but the doctors think Wally will be okay." While it could be two years before Lewis knows whether the surgery has been successful, his family was convinced it was the only option. Lewis represented Australia in 33 Test matches, played 31 State of Origin matches for Queensland and was captain of NRL side the Brisbane Broncos in 1988-89.

"Balance dog " helps girl with seizures

Ann and Cora Mitchell's new dog, Lazer, is a golden retriever that does more than just sit, stay, and lie down.

After months of raising money to buy a "balance dog" for her daughter with cerebral palsy, Ann Mitchell of Windsor Locks was finally able to make Lazer an official member of the family last week.

For several years, Cora, 10, had a dog that would help her with her balance when she and her mother lived in Pennsylvania. But when the two came to Connecticut about a year ago, they had to give the dog up, Mitchell said.With the help of the dog in Pennsylvania, Cora's seizures were minimal, but since then, her seizures have increased, and her balance has been compromised on many occasions.

In November of 2006, Mitchell began raising money for a new balance dog after Cora's doctor recommended that she get one through East Coast Assistance Dogs, an organization that raises, trains, and places dogs with people who have lost some of their independence as a result of a disability.Unable to work because of the amount of school Cora was missing due to her seizures, Mitchell enlisted the help of businesses and members of her community in raising the $6,500 she needed for the dog.

Mitchell said last week that after generous contributions from friends, members of her church, and even strangers, she was finally able to afford the dog, and began "doggie boot camp" with Cora and Lazer on Feb. 1.From the time they are puppies, dogs at East Coast Assistance Dogs receive over 300 hours of training, during which time they learn more than 80 commands. With this training, Lazer will be able to help Cora if she falls, assist her in getting up and down the stairs, and can even help her get undressed.

For two weeks in Dobbs Ferry, N.Y., Mitchell and her daughter participated in daily training with their new dog and learned how to interact with Lazer on trips to the mall, grocery store, or any other public place.Mitchell said that Cora also had to take a written test each day to assess what she had learned throughout the training process.Cora's final test came last Tuesday when she had to perform specific tasks to prove that she could handle the dog in public, Mitchell said.The training process took place at The Children's Village, which is a place that offers help to troubled kids between the ages of 8 and 21, Mitchell said.

She described the training as a "win-win situation" for everyone involved since the kids actually help with the training and are therefore exposed to a positive, life-affirming experience. "The people have been awesome. It's taken a lot of extra time with her," but the trainers were very patient and helpful, Mitchell said.And since training with Lazer began, Mitchell said that Cora has really benefited from her interaction with the dog.

"She's been doing very well with him," Mitchell said. "She has good control of him and even took him to church on Sunday, and he just laid down under her seat and was very quiet."Mitchell expressed gratitude for all of the contributions that enabled her and Cora to pay for Lazer and said that she is happy to see her daughter so excited about her new dog."It's definitely built up her confidence," she said.

Epilepsy can be a difficult battle

The first thing you notice about 12-year-old Nora Leitner is the dark circles under her eyes. They stand in stark contrast to the rest of her appearance; at a glance she might be any petite, pretty tween girl, with her blond ponytail, elfin frame and thousand-watt smile. But the circles tell a different story: Nora looks as if she hasn’t slept in a month.

TYPICAL 12-YEAR-OLD, ATYPICAL TROUBLES Nora Leitner’s epilepsy makes a normal life all but impossible. Among other things, she has to deal with a frustratingly restricted diet.

In a sense, she hasn’t. Nora has epilepsy, and as with 30 percent of those with the disorder, her seizures are not controlled by existing treatments.

She often has more than one seizure a day, mostly at night. Her seizures, called tonic-clonic (what used to be known as grand mal), cause her to lose consciousness for a full minute while her body convulses.

While some people feel an “aura” of symptoms before a seizure, Nora’s happen entirely without warning. When she seized at the top of a staircase in her home in Yardley, Pa., it was plain luck that her parents were at the bottom and caught her as she fell. Though she is on the brink of adolescence, she is rarely, if ever, left alone.

Fifty million people have epilepsy worldwide, and more than 2.7 million in the United States, half of them children. Especially in its intractable form, also called refractory epilepsy, the disorder — and the side effects of epilepsy medications — can cause problems in learning, memory and behavior, and indelibly alter development. It can also consume families, monopolizing their time, money and energy. Yet despite the number of people with epilepsy — the disorder affects more Americans than do Parkinson’s disease, multiple sclerosis and Lou Gehrig’s disease combined — it still carries a stigma that dates to ancient civilizations. Many patients, doctors and families say that stigma hampers care, public recognition and the ability to raise money for research.

“There is an ongoing, significant embarrassment level about it,” said Dr. Orrin Devinsky, director of the Epilepsy Center at New York University. “The feeling, for a lot of people, is that it does carry a lot worse stigma than a cancer, or an H.I.V. even. At some level, it’s society that needs to wake up and realize it’s just another neurologic disorder.”

Warren Lammert, who runs a financial firm in Boston and whose daughter has epilepsy, founded an organization in 2002 with Dr. Devinsky and two others to support research into new treatments. “It’s better today,” he said about public perceptions of the disorder. “But even among well-educated people, people don’t like to talk about epilepsy.”

While many public figures with cancer (or cancer in the family) are forthcoming about the illness, Mr. Lammert said, the same does not go for epilepsy. And though his organization, the Epilepsy Therapy Development Project, has two strong public representatives — the Olympic women’s hockey goaltender Chanda Gunn and the hip-hop artist D J Hapa — the disorder has never found an icon like Michael J. Fox, whose openness about Parkinson’s disease helps raise tens of millions of dollars a year for research.

Meanwhile, despite advances that have helped people with treatable epilepsy, the 30 percent rate for the intractable form has changed little in 40 years. “Refractory epilepsy remains an enormous problem, and there’s just no doubt about it,” Dr. Devinsky said.

Epilepsy results from an electrical disturbance in the brain (though at various stages in history it has been thought of as evidence of a connection to the divine, a sign of demonic possession or the mark of a witch). Types of seizures vary from staring episodes or eye blinks to sudden falls or convulsions. All can be debilitating, depending on factors like frequency and the age when they start.

Comprehensive Epilepsy Centers, medical practices that specialize in treating the disorder at 50 hospitals around the nation, represent the gold standard in therapy. Treatments include anticonvulsant medications, which can have profound effects on memory, behavior and cognitive ability; the ketogenic diet, a restrictive plan that has had remarkable success in controlling seizures; an implanted stimulator that sends regular pulses of electricity to the brain; and surgery to remove an affected area of the brain.

In the last two decades, surgery has changed the landscape of epilepsy for many patients, including children. Yet Nora Leitner, like many others, is not a candidate for surgery because her seizures involve all of her brain, rather than a localized area.

For Nora, her parents, Lee and Kina Leitner, and her brother, Ethan, 6, epilepsy has become the center of the universe, governing decisions about everything from where to live to whether to go out to dinner.

“The level of frustration and the level of stress is just phenomenal,” said Ms. Leitner, 58, a resilient and energetic college professor.

Mr. Leitner, 48, also a professor, hates seeing Nora’s youth overwhelmed by the illness. “Her childhood is defined by this,” he said, “and it’s really sad.”

The Leitners’ experience is typical, Dr. Devinsky said, adding, “It involves everybody to an incredible degree.”

Looking back, the Leitners think Nora had her first seizure in utero two weeks before she was born. Her first recognized seizure happened when she was 41/2 months old; a month later, she had five seizures in three days. The formal diagnosis came after her first birthday. Dr. Christina Bergqvist, Nora’s neurologist at Children’s Hospital of Philadelphia, said Nora’s M.R.I. shows visible abnormalities in her brain.

The critical struggle in Nora’s care, as for many children with epilepsy, has been to safeguard her cognitive life. Children with intractable epilepsy display a wide range of abilities, from normal functioning to profound retardation; Nora falls somewhere in the mid-high range. Her speech is extremely slow and very soft; she often frowns before answering a question, as if struggling to formulate her response. While her answers are usually accurate, her response time is very slow, and she sometimes is not aware that she has been asked a question at all.

Yet beneath the layers of difficulty is a sharp mind, an avid reader in a home filled with books, a child whose favorite subject is science and who can discuss ancient Egyptian culture and identify common vertebrates and invertebrates. Despite her halting speech, she tells a reporter that her chore in the house is looking after the recyclable cans and bottles.

A CONSTANT CONSIDERATION Nora Leitner’s epilepsy weighs into most family decisions.
The family's morning routine must include time for Nora to take her medications, and her special diet can make going out to dinner challenging.

Nora’s father is concerned that her “childhood is defined by this.”

“Nora’s responsible for taking those out,” Ms. Leitner said. Her daughter added dryly, “Yeah, without asking.”

That child, and those submerged abilities, were what Ms. Leitner first saw clearly in 2000, when Nora went off a medication called Depakote. The side effects of anticonvulsant medications are often as disabling as seizures themselves, and Nora’s life on medication had begun at 6 months, when her doctor prescribed phenobarbital, a drug that causes cognitive and language delays.
“We were beside ourselves,” said Ms. Leitner, who teaches psychology at University of Maryland University College and who suddenly found herself putting her expertise to work for her own child. “One of my biggest concerns was, do we medicate her? I knew that the drugs they used to treat epilepsy were all cognitive depressants.”

It is the Solomon’s choice faced by parents of children with intractable epilepsy: risk the damage wrought by seizures, or the side effects of medication? Over the next five years Nora tried eight or nine medications, and in 2000, at age 6, she entered first grade taking two anticonvulsants, Depakote and Topamax, every day.

Then she caught a break. The Depakote made her so sleepy that Ms. Leitner rescheduled the lunchtime dose so she would be alert at school. After a few months, they dropped the midday dose entirely. Suddenly, a new Nora surfaced.

“It was a phenomenal change,” Ms. Leitner remembered. “She was awake, alert. We took away another dose; then that summer, we took the last one away and she started seizing again. But she had started talking, reading, everything she hadn’t done before; she never talked in full sentences until she was 6 years old. I wasn’t willing to go back.”

In October 2002, Nora went on the ketogenic diet. It is like the Atkins diet in overdrive: it mandates vast quantities of fats — like oil, which Nora drinks from a small bottle — and almost no carbohydrates. Every morsel is weighed, and no deviations are allowed. Within weeks, Ms. Leitner says, they saw pronounced changes in Nora’s abilities and attention span. Over the next 21 months, she had only two seizures.

But in the summer and fall of 2004, there were three more, and that October, while swimming at school, Nora had a seizure and nearly drowned. Within a year, she had begun to have a seizure or two a month as she entered puberty. Last March she had a vagus nerve stimulator implanted, but her seizures became so frequent that by May the Leitners had the device turned off. Since then, she has often had more than one seizure a day.

Families of children with intractable epilepsy often have a hard time getting the constellation of services they need. “Throughout the years, we’ve had to find things out for ourselves,” Ms. Leitner said. “Nobody ever said to us, ‘Nora needs speech therapy,’ or ‘Nora should see a developmental pediatrician.’ ” Even finding the right school was a trial; the Leitners now drive Nora 30 miles each way to the Orchard Friends School in Moorestown, N.J.

Social isolation is a persistent issue. Schools may not want to include students with epilepsy on field trips; peers may not invite them for sleepovers. “A lot of it just seems to be awareness issues,” Mr. Leitner said. “Most people have never seen somebody have a seizure.”

Dr. Bergqvist agreed. “It is frightening to see a child seize,” she acknowledged. “And then based on that fright, people decide, ‘I can’t deal with that child.’ People still think it’s contagious.”
In late November last year, the Leitners agreed to give the vagus nerve stimulator another try. Nora has stayed on the diet, though it appears to be no match for the effects of puberty. Meanwhile, she is having as typical a 12-year-old life as she can. She loves to swim and has taken gymnastics, piano lessons and hip-hop dance classes; her bedroom brims with books, dolls and stuffed animals; she dotes on the family dog, Franklin, and the cat, Lily.

Dr. Bergqvist says Nora could experience a remission after she goes through puberty. Until then, the choices continue. But Ms. Leitner acknowledged that their approach may have to change. “At a certain point, I’m going to have to stop worrying about her ability to think and go for the seizure control,” she said.

But she knows that it will not be easy. “If she had always been the way she was before the diet, I probably wouldn’t be as dramatic about this as I am,” she said. “But I’ve seen what she can do.”
For his part, though, Dr. Devinsky says that families like the Leitners, torn as they may be over the correct path to take, are on the right track.

“If there’s a message, it’s not to give up,” he said. “They should do everything possible to maximize the quality of life of their child, but at the same time, never, ever give up. Because there will be other things coming down the pike.”

Seizures can be debilitating

Advocacy group gives a voice to students with disabilitiesEditor’s note: McKenzie’s responses are her own words, typed using a computer program called Intellatalk.McKenzie Tavary is a freshman at Capital High School. She suffered her first epileptic seizure when she was only 8 months old. It lasted for three days.

Three months later, another hit that lasted for two weeks. By the time she was 6 years old, the seizures had become so frequent and debilitating the family traveled to Seattle for surgery to remove two walnut-sized pieces of McKenzie’s brain.McKenzie, now 15, has been diagnosed with autism and cognitive delay. She is speech impaired and has a severe seizure disorder.“I think her brain damage caused by the seizures set off the other disabilities,” said McKenzie’s mother, Diana Tavary. “We (she and husband, John) aren’t doctors, but that is our belief system.”

Diana is one of the driving forces of PLUK, or Parents Let’s Unite for Kids, a Helena organization that is like boot camp for parents who have children with disabilities.She has made a promise to her daughter McKenzie that she would always have a voice, and one of the ways she is helping fulfill that promise is by helping all students with disabilities through PLUK.PLUK is a private, nonprofit Montana organization, formed in 1984 by parents of children with disabilities and chronic illnesses, that offers information, support, training and assistance to aid their children at home, at school and as adults.

It serves families and individuals with disabilities of any age at no cost.n n nMcKenzie’s seizures stopped in January 2005 after a vagus nerve stimulator was implanted under her skin near her upper pectoral muscle. A wire runs from the VNS up her neck, where it connects to the vagus nerve. It sends electrical signals along the nerve to her brain which prevents the electrical bursts that cause seizures.McKenzie is now functioning more than ever. She writes. She speaks, although it is challenging.But most important, she thinks, feels and learns.

She refers to herself as “Mokn”; Diana says her daughter told her the main reason was because it was easier to write than McKenzie.McKenzie recently attended high-school listening sessions — a facilitated discussion in which students, parents, staff and community members had the opportunity to talk about the current state of high school education in Helena.The group witnessed how difficult it can be for McKenzie to communicate, and how hard it was to get to the session.She typed her comments, which were read by a paraprofessional who assists her.

She said she was happy to tell people what she thinks about school.Teachers, she said, need to know that she is not stupid and wants to be treated like other kids.“No make theenk us dum cuz reelie just diffrunt than them but God made us tu not just them peeplz ho donttt be difvrunt,” McKenzie typed.At the end the meeting, the group asked McKenzie to sit in the center of the group, and they proceeded to clap for her because she was so honest and willing to participate.McKenzie, however, did not appreciate the gesture.

“No like them clap for mokn just cuz hur diffrunt then uthur kidz,” she typed afterwards.n n nMcKenzie is one of dozens of students with disabilities in the Helena School District and thousands across the country.“The key is that these kids have the opportunity not to be cloistered into rooms by themselves,” Diana said. “They want to be treated just like any other kid out there.”She says PLUK tries to get parents in a militant place, but not in a negative way. It teaches those interested about how the disability system works and how to get legislation passed.“So when issues arise, you’ll know who the go-to person is,” she said.

Marvin Williams is an administrator in student services for the HSD, whose job is to oversea all of special education. He is a big supporter of PLUK.“I think they are an asset to schools and families if they use the right approach,” he said. “If they do, they can express the interest of the family and the school to find a workable solution.”Parents have the right to have an advocate and be advocates, he said.“It offers support, both emotionally and mentally and gives the school the perspective of the parent,” Williams said.The PLUK founders felt strongly that parents of children with disabilities need to band together to give each other support because of the healing that takes place when people who share a common problem can work together to find solutions.

PLUK employs nearly 20 part-time and full-time staffers in Helena, Billings, Kalispell, Havre, Great Falls, Missoula, Butte and Miles City, according to Sheryl Shockley, PLUK’s office manager in Billings.“We are there for the best needs of the child,” Shockley said.Tavary is a take-charge woman. She spearheaded getting 15 volunteers to work on a local PLUK associate board about six months ago.“My goal would be to establish relationships,” Tavary said. “I want to be welcomed at a table to collaborate to find solutions.

I’ve been teaching others how to negotiate, so everyone comes out a winner.”Shockley said these advisory boards serve as the voice of community for PLUK.“They help with setting up events to raise public awareness about our organization,” she added.Kathy Bean, disability coordinator for the office of community service, says many parents wonder what options are available, which is where PLUK comes in.

Bean says advocating for people with disabilities is near to her heart because she has quite a few family members with disabilities.“They (PLUK) have lots of materials in their library to utilize,” she said. “They continually try to promote inclusion.”Bean says giving families a unified voice helps them to be heard.

What is the best way to treat your pet's seizures?

Seizures are among the most frightening events you can witness in a beloved dog or family member. Feelings of helplessness and fear are natural, and the situation can feel overwhelming.
What can you do about seizures? First, it’s important to understand that they don’t just happen. Something inside your dog triggers the reaction, and the challenge is to determine the cause.

After trying the usual medication and enzymes, many people look for magical solutions. They may turn to the Internet, where they find a pack of merchants ready to solve their problem forever. A search on “seizure” reveals a dizzying number of products available with instant payment options.
Unfortunately, there is no quick and easy answer to seizures. If a product seems too good to be true, it probably is. Many who advertise quick fixes on the Internet are truly interested in one thing: seizing your money.

Your best course of action is to find a competent and caring veterinarian—one who can help diagnose the cause and prescribe the best medications for the specific situation. You’ll want to ask around and find one who can really help you.

Don’t be afraid to change veterinarians. If you think a vet is not helping with the problem, you should definitely seek out a second opinion or get a referral to a specialist. At the same time, ask yourself if you’re really giving your vet the freedom to treat the illness effectively.

Have you declined diagnostic tests and failed to follow through on re-check visits? Diagnostics and re-checks can be vitally important in chronic conditions. They didn’t arise overnight, and it may take some time to see results.

Teamwork is also critical to success. You and your veterinarian need to be partners in your pet’s care. Make sure your vet is someone you like and respect, so you the two of you will be more inclined to work together on your pet’s behalf. Modern medicine is miraculous in many ways, but only if you’re working with a good veterinarian who can help you.

As for the temptation to let your fingers do the walking on the Web, the Pet Care Forum on America Online offered sound advice: “Get off the ‘Net and call your vet.”

Career of police officer is in jeopardy because of seizure history

A veteran Baltimore County police officer, designated by county officials for disability retirement after experiencing seizures, is fighting to keep his job.

Officer Philip Crumbacker, 40, who has served on the department's tactical unit, took his case yesterday to the county Board of Appeals, which is being asked to decide whether the officer should have to retire after suffering two seizures within two months two years ago.

During the hearing, two doctors gave differing views on whether Crumbacker, a more than 20-year veteran, should remain on the job. One said the officer's seizures are under control so long as he stays on his medication, but the other said the prospect of another seizure raised public safety issues.

Testimony in the case ended yesterday, but no decision was made. Lawyers are to file briefs in the case by next month.

"I am very certain that the Board is going to agree the risk that Officer Crumbacker poses, despite his many, many years of fine service to the county is ... unacceptable, and that he should be retired on disability as has been requested by the police department," Suzanne Berger, an attorney representing Baltimore County, said during a previous hearing, according to transcripts.

But John A. Austin, an attorney representing Crumbacker, has argued that the officer is not disabled, has not had a seizure in more than two years and is capable of returning to full duty.
"There's nothing physically wrong with him," Austin said yesterday after the hearing. "He's as physically able as he ever was, on his medication."

According to county Board of Appeals documents and transcripts, in July 2004 Crumbacker was asleep in his home when he had a seizure witnessed by his wife. He was taken to a hospital and later released, hearing records show.

It was the first time Crumbacker had a seizure, and after an evaluation a doctor declined to prescribe seizure medications, records show. But in September of that year he suffered a second seizure, this time while on police duty, the records show.

Crumbacker was driving on the Baltimore Beltway, responding to an incident, when a bottle of water that was sitting between his legs fell to the floor, hearing records show. As Crumbacker reached down to grab the bottle he "started to feel a little strange," according to a transcript of his testimony before the Board of Appeals.

He attempted to pull the car over but crashed into a construction site and rammed into a portable bathroom, according to hearing documents.

"I do not remember any part of the crash itself," Crumbacker testified, according to the hearing transcript. "When I did wake up, there was a state police paramedic standing over top of me, explaining I was just in a crash."

Crumbacker took off three months from work and was placed on medication, records show. He said in an interview yesterday that doctors do not know what caused the seizures.

In late December 2004, he returned to work and began participating in his unit's tactical training and exercises but did not go out on assignments.

Crumbacker testified that he has been assigned to light duty, and he said yesterday that he has been working in the county's 911 center.

In June 2005, he received a letter from Baltimore County saying that he was not fit for duty.
A county retirement board voted to approve the county's retirement request, and Crumbacker filed an appeal last year.

Can brain pacemaker control seizures?

More than two and a half million people in the US have epilepsy. There are treatments, but they don't work for everyone.

UCLA researcher Dr. Chris DeGiorgio has a new approach, "What we're doing, we're stimulating branches of the nerve that come right under the eyebrow."

Jennifer Rees says an experimental "brain pacemaker" has made living with epilepsy easier, "Before I started using it, I was having about eight seizures a month. And now I'm having one to two."

Dr. DeGiorgio co-developed the device, "The idea is that it doesn't abort seizures, it prevents seizures."

It works by stimulating the trigeminal nerve that runs along either side of the face. Dr. DeGiorgio says, "By stimulating this nerve we are activating a center in the brain stem that's very important with inhibition of seizures."

Worn externally, the device consists of a pocket-size stimulator and electrodes that can be hidden under a hat. According to Dr. DeGiorgio, there are improvements in the works, "We are working on an implantable version, but we believe that this external system will be critical for any permanent system."

In the future, patients could "try out" the external system to see if it works, before going through surgery to have a permanent one implanted.

Jennifer's just happy to have another treatment option. "There are a lot of medications out these days and most people find one that they'll respond to. I'm, unfortunately, allergic to some of the ones that work best for me."

Taking control of her seizures means taking back control of her life.

The study was a pilot study with seven participants. Four of the seven had a 50 percent or more reduction in seizures.

Can TV screens and computer monitors be linked to Epilepsy?

A Chinese academic has warned that an unusual type of epilepsy, characterized by seizures triggered by flashing or flickering lights, is becoming more prevalent among young people.
Photosensitive epilepsy, though uncommon, is affecting people aged between 8 and 20 in China, said Professor Qin Jiong from No 1 Hospital of Peking University at a meeting in Beijing.

Qin blamed the increased prevalence on numerous hours spent by young people watching TV and playing video games. The flickering light from monitors can trigger photosensitive epilepsy.

Statistics show that about 6 million people in China suffer from epilepsy. Experts estimate that about 3 to 5 percent of people with epilepsy are photosensitive.

Both artificial and natural light sources that stimulate the eyes might be a problem for people with photosensitive epilepsy.

For example, camera flashes, strobe lights in discos and sunlight shining off wet surfaces or through tree leaves could all trigger seizures.

Experts said that about 30 percent of photosensitive epileptic patients can control their seizures by taking drugs.

Prevention measures in the home and office include installing filter screens in front of TV and computer monitors, watching TV at a safe distance and using soft lighting, experts said.

Experts called for an end to social discrimination against epileptics, saying that even if epileptics suffer temporary mental disorders they are usually normal intellectually.

The Ministry of Health said in June last year that more than two-thirds of epileptic patients in rural China had not received treatment that could allow them to lead a normal life.

China plans to expand a pilot project in 80 counties to improve the treatment of epilepsy.

Epilepsy is a neurological disorder and symptoms range from minor lapses of attention to severe and prolonged convulsions and loss of consciousness. Many cases are caused by an underlying brain disease or injury, but children often develop the condition for no obvious reason.

Worldwide clinical research shows that about 70 percent of epileptics can control their seizures by taking anti-epilepsy drugs, and up to 60 percent of them can be treated in two to five years and lead a normal life.

Dog saves owner's life during seizures

This recent bitter cold weather could have killed a Toledo woman, but she had a guardian angel on four legs. Her dog saved her life.

Sam Good has something called Reflex Sympathetic Dystrophy that affects the nerves and muscles in her body. It sparks painful seizures through her body. "It's like Restless Legs Syndrome times 100 and it's through your spine," said Good.

Good told us she was getting ready for bed last week with nothing more than her pajamas on and decided to turn out the lights on her unheated back porch. She said the cold ignited another seizure and she fell onto her loveseat. "I was in a ball and I got in a ball because I knew I was going to freeze," Good explained. "I thought I was going to freeze to death because I couldn't get words out," she added.

Temperatures at the time were in the teens.

In the seat, in intense pain, Good says she was finally able to call out Maddie's name quietly by human standards, but plenty-loud for a dog. "She keeps picking my arm up and picking my arm up," said Good while re-enacting the event. "And I'm like, 'Maddie, I can't.'"

"And she just put her back under my belly and kept lifting and lifting," demonstrated Good. At that point, Good says she could barely get her arms around the dog's neck. "She had to keep lifting me onto her back to get the rest of me because I was numb... my spine... I didn't feel anything."
The 104-pound Golden Retriever carried Good on her back, dragging Good to her bed inside. Good was still hurting but was warm and eventually the seizures subsided. If it wasn't for Maddie's rescue? "I'd been froze," Good pointedly told us.

She also said Maddie isn't just her best friend, "she's the best dog ever."

Toddler plagued by rare seizure disorder: West syndrome

WHEN Joanne Hardisty's three-year-old son Jack started having more than 30 seizures a day, she had to take action. But the 25 year old from Scunthorpe, Lincs, was facing a terrifying choice...

WHEN the doctors first told me their plan, part of me thought that they must be joking. They couldn't seriously want to remove half of my toddler's brain, could they?

But it was far from a laughing matter and they insisted that it was the only way to stop Jack having more than 30 epileptic fits every day. Even so, could I really let them do something so drastic?
I know that every mum would do anything to help their child but even if Jack survived the procedure, it would change the whole shape of his life and prevent him doing things that many others took for granted.

Even though he'd been plagued by health problems during his short life, Jack was such a blessing. I'd cherished him ever since he rather reluctantly came into the world...

I'd become pregnant in June 2002, a year after meeting my partner Daniel Hitching, 26. We'd moved in together quickly and hadn't really thought about having a family. So the news of my pregnancy was a surprise but, once we got over it, we both began looking forward to becoming parents. Everything seemed fine at my scans and we were told that Jack was developing well.
As the months passed, we became increasingly excited. But Jack's arrival wasn't straightforward...

I was induced and went into labour in February 2003, two weeks after my due date. But as the hours passed, the doctors told me that the baby kept falling asleep in my womb - Jack may have been in no hurry to come out but the doctors had other ideas.

"We need to perform an emergency caesarean and get him out," they warned. So I was rushed into surgery and Jack arrived soon afterwards, weighing a healthy 7Ib 1oz. Everything seemed fine until a few days later, when we'd taken our tot home.

I noticed that occasionally his body would jerk and he'd throw his arms over his head. It was as if he'd heard a sudden noise that made him jump.

This was soon happening up to 10 times a day and my doctor diagnosed colic.

Then it got worse. As he threw his arms back, his eyes would roll back in his head, too.

I repeatedly visited my GP, who stuck by the original diagnosis. I accepted that but my fears grew when Jack was a few months old and, as I cuddled him one afternoon, his whole body began twitching.

My mum Susan, who is a nurse, came round to babysit and I told her what had happened. "I think he may have had a fit," I said worriedly.

She reassured me and promised to keep an close eye on him. So I went out, fearing that it I was cracking up and had just imagined things.

But a few minutes later, Mum phoned. "He's just had another one," she said.

So we drove Jack to Doncaster Royal Infirmary, where he was put under observation. When he twitched again, I told the doctor it was colic. "No," he said, "it's something much more serious."
Jack was transferred to Sheffield Hallamshire Hospital for a scan on his brain. Once that was done we went back to Doncaster, to wait anxiously for the results.

Daniel and I paced up and down for hours, wondering what was wrong with our little boy.

At midnight, we finally got the answer. Jack had West syndrome - a rare type of infantile epilepsy causing abnormal electrical currents in his brain and sparking the fits, which can slow or halt childhood development.

The doctors told me it was something that had happened while Jack was growing inside me and was probably why he'd fallen asleep in the womb as doctors tried to deliver him. I couldn't believe it.

Daniel and I were devastated. We were told that Jack would need lots of medication to reduce the number of seizures.

We tried everything we could but nothing worked... until he was seven months old.

At that stage, Jack suddenly improved. The fits stopped and, over the next three weeks, he learned to sit up by himself for the first time. We were thrilled. But then, just as suddenly, the fits returned. This time, they affected his memory, too, and Jack forgot how to sit up.

Cruelly, we were right back at square one - and that's when doctors told us of their radical plan to remove half of his brain, in the hope that it would stop the fits. It was only the second time that the surgeon had tried the procedure but we had to admit that nothing else was working.

There was a high risk that Jack could be paralysed, have a stroke or even die during the surgery. It was an agonising decision but we knew that we really had no choice - it was the only way to stop the fits that were ruining his life.

My hands shook as I signed the consent form...

The four-hour operation was carried out in November and that four hours was the longest wait of our lives.

We were so relieved when the team told us that the surgery was a success and that they had removed the right side of Jack's brain.

It meant he lost all vision in his left eye. The right side of the brain also affects speech and memory of pictures. This side also deals with skills needed to, for example, dance, play the piano and swing a tennis racket.

So, Jack is never going to do any of those things. But, in the scheme of things, that's not important. It stopped the seizures and, for us and him, that's all that matters.

In all, Jack was in hospital for a week and now has a horseshoe scar on his scalp. He made a fantastic recovery and hasn't had any fits since. In fact, the procedure has helped him in so many unexpected ways.

He never used to laugh before but now, amazingly, he does. The first giggle came soon after he returned from hospital. Daniel and I couldn't believe it - it was a wonderful sound.

Jack has never spoken and isn't likely to, so hearing him laugh - and watching him sit up - means the world.

Our second son, Danny, was born in July 2004, weighing 6Ib 7oz.

I was terrified that he'd also be born with West syndrome so I watched him like a hawk. But luckily he is fine and the boys love being together.

We're busy fundraising now, so we can buy Jack a special bedroom with sensory lights to stimulate his development.

A couple of days before his operation, myself and six members of my family did a skydive and raised more than £2,000!

It's fantastic how Jack's quality of life has improved since his operation and incredible to think it took the removal of half his brain to make him better.

Dad saves son during seizures

Wearing his favorite Disney jacket with a big No. 95 on the back, 5-year-old Jacob Pruszynski sat on the edge of the stage at the Shrine Auditorium on Tuesday morning, sometimes tugging at his father's coat tail, a big smile on his face.

"Why are you and Daddy here?" he was asked.

A bit shy, he held his head down for a long time, and then looked up and very softly said, "Daddy did good."

His father, Kevin Pruszynski, a 33-year-old Dayton firefighter and paramedic, was honored for doing something very good — saving his son Jacob's life during a traumatic and challenging ordeal in November of 2004.

The father was one of four Miami Valley firefighters and medics honored by the Antioch Shriners in the Tuesday ceremony at the Shrine Center, 107 E. First St. in Dayton.

Also honored were firemen Jonathan Willis of Miami Twp., Douglas Gilmore of Miami Twp. and Curt Frazee of Deerfield Twp. in Warren County.

Antioch Potentate Roland Williams told those gathered, "We are pleased to recognize the men and women who are on the front line of saving lives. It goes along with our good works of supporting the 22 Shrine Hospitals that offer free medical service to children."

Pruszynski, a firefighter and paramedic since 1996, had worked the all-night shift before coming to the morning ceremony. He was surprised when he was identified as a hero.

"I was told they were honoring my wife, Melissa, who has been active in raising money for Children's Medical Center," Pruszynski said.

He was off duty that day when his son ran across the room in their Dayton home, tripped and fell, and began exhibiting a seizure-like activity, involving his whole body, Pruszynski said.

"Jacob never had seizures before. My wife called 911 and I began holding his head trying to prevent any injury from the erratic seizures."

When Medic 11 arrived, the father carried his son, who was still undergoing seizures, to the ambulance.

According to firefighter Frank Snell, who nominated Pruszynski for the award, "While en route to Children's Medical Center Jacob's breathing became increasingly shallow. At one point Jacob had stopped breathing on his own and Kevin, who was riding with the crew, intubated (inserted a breathing tube) his son and began ventilating once again through a bag valve mask — which effectively saved the child's life."

Pruszynski said that during the emergency it was "sort of an out-of-body experience" for him.
"I reacted automatically doing what I have been trained to do to in these matters," he said. "The fact it was my son had to be in my thoughts, but I just did everything I could, just as I would for any patient."

According to his wife, Melissa, 35, it wasn't until her husband came out of the emergency room and sat down for a moment that he finally seemed to realize what happened. "It was very emotional then," she said.

Jacob still takes medications, Pruszynski said, but has not suffered any additional severe seizures. He is still undergoing tests to try and determine the cause.
The father's three other children, Ashley, 12, Rebecca, 7, and Emma, 1, were on hand when Pruszynski was honored.

As he accepted a plaque, Pruszynski told those gathered, "I thank those I work with for the fine job they do every day. I thank the Shriners for this recognition. And I thank God for watching over Jacob that day."

New medication is quite promising regarding seizure disorders

People with newly diagnosed epilepsy experienced few, if any, seizures while taking the drug levetiracetam as a single therapy, giving hope to epilepsy patients who don't respond to or can't tolerate existing treatments, according to a study published in the February 6, 2007 issue of Neurology®, the scientific journal of the American Academy of Neurology.

For the multi-center, double-blind study, researchers assigned nearly 600 adults who had at least two seizures in the previous year to the drug levetiracetam or to controlled-release carbamazepine, a common epilepsy treatment. While levetiracetam is currently used as an add-on therapy by epilepsy patients, this is the first time its effectiveness as a single therapy has been tested through a clinical trial that provided class 1 evidence of efficacy as defined by the International League Against Epilepsy.

The study found 73 percent of people taking levetiracetam and 72.8 percent of people receiving controlled-release carbamazepine remained seizure free for at least six months.

"Both drugs produced equivalent seizure freedom rates in newly diagnosed epilepsy.

Levetiracetam helps fill a need for safe and well-tolerated, easy-to-use epilepsy drugs, particularly because more than 30 percent of patients do not achieve seizure control with existing treatments," said study author Martin Brodie, MD, with the Western Infirmary Epilepsy Unit in Glasgow, Scotland.

Of those remaining seizure free for six months, the study also found 80.1 percent of those taking levetiracetam and 85.4 percent of those taking carbamazepine did so at the lowest dose level.
"This trial confirms previous uncontrolled observations that most people with epilepsy will respond to their first epilepsy drug at low dosage," said Brodie.

Researchers say 14.4 percent of people taking levetiracetam withdrew from the study because of side effects such as drowsiness or dizziness, while 19.2 percent of people taking carbamazepine withdrew from the study with rash being the most common side effect.

Toddler suffers from rare seizure disorder

"My son, Bryant is almost three years old. He has a rare genetic mutation called Dravet syndrome. It's also known as Severe Myoclonic Epilepsy of Infancy (SMEI).Bryant does talk, but his speech is about six months behind. He doesn't like taking his medications. I don't think he understands as yet how sick he really is. Experts say there in no known cure and that he will never outgrow this syndrome.

Bryant cannot tolerate any heat or temperature changes; for any variation in temperature - from bathwater to outside heat - throws him into a seizure. He can't be exposed to germs either, because secondary infections could mean more seizures for him. He really is a courageous little boy. He's been through so much in his young life.We live in the small Southern Illinois town of Carmi. It takes us an hour to get to a hospital, since Carmi has no hospital. In the beginning, we used to call the ambulance, but don't bother with that anymore.

Every time Bryant has a seizure, we give him his medication, put him on oxygen, get into the car and start driving towards Evansville, where the closest hospitals are.We are also members of the Air Evac Lifeteam and they have landed their helicopter right in front of our house on at least two occasions. I'm a nurse by profession and have performed CPR on my son five times till now. It's a terrible feeling when you have to do CPR on your own child.

Everyone tells us we need to live in a bigger city, where we are closer to medical help. But it's not easy to move; to uproot yourself from your home and family. What about jobs and money?"How it all started"Bryant was born on April 14th, 2004 with pneumonia in both lungs. At that time they said it was something to do with C-section babies. So he spent his first five days after birth in the Neonatal Intensive Care Unit fighting off the pneumonia.

When Bryant was just three months old he experienced his first seizure. I was giving him his bath at the time. Suddenly his eyes rolled backwards, his lips turned blue, and his arms and legs began to jerk uncontrollably on the right side of his body.I panicked. I thought it was a stroke. We rushed him to hospital and were then transferred from the Evansville hospital to the bigger, St. Louis hospital. After conducting several tests, which all came back normal, the doctors admitted they couldn't find anything wrong with him.

They said perhaps the seizure was just a fluke and maybe it would never happen again. They sent us home.About three weeks later, Bryant had his second seizure. This time it lasted 25 minutes. He was started on Phenobarbital - an anti-epilepsy medication. The doctors said it was the safest medication to use on infants.A month went by and Bryant had his third seizure. After this, it started to happen more and more frequently.

The seizures increased in frequency, from the time he was three months old till he was about a year old, until they became a weekly event. It definitely seemed to be getting worse.When Bryant was 13 months old, he had a seizure that lasted two hours and 45 minutes. He quit breathing on his own and had to be put on life support. He was declared status epilepticus, which basically means it's a life threatening condition in which the brain is in a state of persistent seizure. The doctors just could not get the seizure to stop and he eventually quit breathing.

However, he did make it back to us and he has made it back many times since then.It was at this point that we decided to take him to the Mayo Clinic. We stayed six days at Mayo and they finally told us he had intractable epilepsy. They said, it could not be treated, he wasn't a surgical candidate and it was all just a matter of adjusting his meds.We brought Bryant home. But his seizures continued. When he was about 18 months old, he had another static episode. We took him to another doctor in Indianapolis, who changed his meds all over again.

Then his seizures started happening daily, 2-3 times a day. He's had so many seizures to date, that I have all but lost count."Finally a diagnosis"At this point in time the lady I worked for at the Egyptian Health Department made a call to Chicago and they asked me to bring him in right away. We'd taken him to St. Louis, to the Mayo Clinic, to Indianapolis and were now pinning our hopes on Chicago. It was June of 2006, when Dr. Linda Laux - a specialist in pediatric epilepsy, from Children's Memorial Hospital in Chicago - finally met Bryant.

It only took her 45 minutes to reach a diagnosis. Bryant had SMEI-Dravet Syndrome, she said.Apparently there are less than 500 confirmed diagnoses of SMEI-Dravet syndrome in the world. SMEI stands for Severe Myoclonic Epilepsy of Infancy. It's also known as Dravet syndrome, after Dr. Charlotte Dravet, a French psychiatrist and epileptologist, who first described it.It's basically a progressive disorder caused by a genetic mutation.

Typically kids start intellectually on target, but start having every type of seizure there is and progressively become developmentally delayed and regress in terms of acquired skills. Many with SMEI are non-verbal, non-mobile and severely retarded before puberty.Bryant was taking seven anti-epileptic meds every day at the time of his diagnosis. Dr. Laux, who is supposed to be the US expert on this disease, started him on Frysium and took him off several of his old meds.Now Frysium comes from a foreign country and is not FDA approved.

Hence our insurance won't pay for it. Yet Frysium is like a miracle drug. Ever since Bryant started taking them, he hasn't had that many seizures."Changing our lifestyle"In addition to Bryant, I also have an 11-year-old, Chantele. She's very healthy, very active and is a cheerleader. She's a big help with Bryant. Yet I know it's tough on her, since we spend so much time hovering over our sick child.I work seven hours a day, as a nurse at the Egyptian Health Department. They are very good at understanding what I'm going through. My mother-in-law, who is a retired school teacher, trained in CPR, looks after Bryant, when I am at work.

She calls if he's having a seizure. My husband Jason is a coal miner.We have an online support group that helps us a lot. We've all had our moments of despair and panic attacks. But it's a matter of learning to accept the situation and dealing with it.It's true that we've changed our lifestyle considerably. Though we are essentially outdoor people, most of our summers are spent indoors now, because Bryant needs air-conditioning; otherwise the temperature change can throw him into another seizure. We find things to do that don't cost too much, because we know we need to save for Bryant's medical expenses.

You just learn to deal with it.We don't really want to leave Bryant alone for even a moment. But we need to work to bring the money in. So it's a catch 22 situation of sorts. For example, we recently paid $5,000 for blood work to check for a missing chromosome. The results showed that part of Bryant's chromosome is missing the SCN1A gene."Ever hopeful"I went to a conference sometime ago and met the famous Dr. Dravet herself. She told me to be optimistic and hopeful. She said if seizures are controlled the likelihood of Bryant having cognitive problems as an adult are less likely. She stressed the importance of Bryant staying in therapy and the need for his mind to remain active.It's so important to be an advocate for your child.

If in doubt, always get a second opinion. I knew in my heart that something was really wrong and kept pushing for a diagnosis. Doctors thought I was crazy.I have gone to battle with so many healthcare facilities. But it was my child's life at stake and I wanted to do the best for him. If there was enough money to push Dravet Syndrome-SMEI, we would be closer to a cure today; closer to helping children like Bryant lead a more normal life."The Trust Fund"Our greatest fear is that we will be sleeping and Bryant will have a seizure in the middle of the night and we won't wake up in time to help him. That's why having a seizure dog is crucial.

A seizure dog is not only a companion, but is also trained to pick up on a pheromone scent and alert us if Bryant has a seizure.To help pay for a seizure dog, we set up a Trust Fund for Bryant at Banterra Bank, in Carmi, sometime ago. We managed to reach our monetary goal due to the generosity of people who contributed to the fund. The dog is now in training and will be with us very soon.Right now, Bryant has about a 30% delay in speech. At present he's in the early intervention program and therapists come home to work with him.

Currently, he is in speech therapy, physical therapy, occupational therapy, developmental therapy and Hippo therapy.Bryant absolutely loves the Hippo therapy, donated by a lady, where he gets to ride a horse to improve balance and coordination. I want to get him into aqua therapy. We're hoping to put in a pool so he can use it for that purpose.But in April 2007, he turns three and won't qualify for these early intervention services anymore. At that point, I will need to drive him back and forth for all his therapies and pay for them out of my pocket. That's why we're hoping people will continue donating to Bryant's Trust Fund - so that it can help pay for his medications, therapy and other medical needs."

How you can helpIf you want to help make a difference in Bryant Weasel's life, send in a check addressed to the Bryant Weasel Trust Fund, at Banterra Bank, 1310 West Main Street, Carmi, IL 62821."No contribution is too big or too small," says Amy.

"Bryant will need special care for the rest of his life."If you would prefer sending a check to Amy directly, contact her at amyweasel95@yahoo.com or write to us at the Southern Health Magazine, 710 North Illinois Avenue, Carbondale, IL 62901 and we will forward your letters to her.For more information, visit www.freewebs.com/bryanttel - this is the website Amy's created for her son Bryant.

Rugby legend goes through surgery to treat seizures

RUGBY league legend Wally Lewis is set to have brain surgery to try to free himself from debilitating epileptic seizures that have tormented him for nearly 20 years.

The ex-Queensland and Australia captain, now a Former Origin Greats director and sports journalist with Channel 9, will go to Melbourne this month for more medical tests.

Lewis revealed he is prepared for the news he fears most - that he will need an operation to remove the damaged part of his brain because medication can no longer keep his seizures in check.

"We have spent a fair bit of time tossing the coin over which way we were going to go," Lewis said.

"I made a decision years ago that there was no way in the world I was going under the knife, but I have done a complete turnaround on that.

"Really, surgery appears to be the only option left for me now."

Lewis clearly remembers the day his world turned upside down.

"I was sitting at home one morning watching television and just started getting this uncomfortable feeling," he said. "It is almost like a premonition that something is coming on. Then you get what is known as an episode, where you don't understand a thing.

"The things that you are hearing around you make no sense. Things you are watching on television seem to be backwards, upside down, wrong way round. You can't make any sense out of anything you are hearing."

The disturbing experience Lewis described was an epileptic seizure.

In the latest edition of the Former Origin Greats Queenslander Magazine, Lewis explains that he was first diagnosed with epilepsy in the late 1980s, while still playing in some of the most famous matches of his career.

"At that stage I wondered whether it was the aftermath of a concussion or something like that," Lewis said. "The doctors got me in for some scans. I think it was more to look for clots or damage, but there didn't seem to be anything there."

Eighteen months later, after some more episodes, a new doctor suggested tests for epilepsy.
"I had to pick my jaw up off the floor when he told me," Lewis said. "He said they could prescribe medication for it, and that was it."

Lewis's stellar league career continued until 1992, with the Maroons captain admired as much for his leadership and toughness as for his skill.

It was only recently, more than 14 years after his playing days ended, that his condition became public.

Lewis, now 47, experienced a couple of on-air episodes while reading the Nine sports bulletin. Speculation about his health prompted him to reveal his epilepsy battle.

In an interview screened on Nine last month, he admitted the neurological disorder had robbed him of many proud sporting memories.

Clearly frustrated, Lewis said: "I just want to get over it. I'm sick and tired of being confused."
Doctors told him the TV incidents were symptoms his medication was no longer effective.
His worried wife Jacqui said: "He's scared for the first time in his life."

Agreeing to surgery was difficult, but unavoidable.

"I had seen a bloke who had had the surgery done, and ... the way he responded, it frightened me a little bit. I looked at the bloke and wondered whether that was the way I wanted to go," Lewis said.

"They cut a piece of the brain out, to put it bluntly. I originally thought it was the size of a thumbnail, but it is a fair bit bigger than that.

"But I have seen the guy since and he is handling it quite well."

Seizures can originate from psychiatric disorders

The relationship between epilepsy, depression and anxiety has been documented over the years. Now, a new study provides a better understanding of why this occurs and suggests the characteristics of the seizure activity may predict the development of psychiatric symptoms.

Individuals experiencing relatively frequent, short duration seizures appear to be at higher risk of developing mental health issues, report the authors of the study appearing in the journal Epilepsia.
“Traditionally, epilepsy focused in specific lobes of the brain was considered more likely to have psychiatric consequences,” says study author Wilhelmina Swinkels, “but our work shows that more frequent or acute seizure activity is more likely to be the culprit.”

According the study, patients with more frequent seizures and a shorter history of seizure activity are more prone to develop psychiatric disturbances.

“Despite the fact that there appears to be a connection between epilepsy and psychiatric disorders, our research tools are still evolving and are not able to account for all of the factors involved in this complex process,” says Swinkels.

“Continued investigation of this relationship is required to truly understand it.”