Workshop spotlights epilepsy, other disabilities
INDIANA -- Next week, more than 200 Indiana County community members, business representatives, medical personnel and government officials will gather to learn more about several disabilities that affect a number of county residents.
The workshop is the first of its kind in Western Pennsylvania, according to Barb Telthorster at the Arc of Indiana County. It is intended to enlighten the public about the everyday obstacles encountered by the disabled, in an attempt to better serve them.
The Disabilities Awareness Workshop will take place from 8 a.m. to 4 p.m. Wednesday at the Rustic Lodge. Telthorster expressed hope that the workshop will help create a more welcoming environment for disabled citizens and visitors.
Among those attending the session will be medical personnel and hospital workers, emergency responders, law enforcement officials, legislators, educators and students, community service agencies and representatives from businesses and churches, as well as people with disabilities and their families.
Several disabilities will be highlighted by local speakers, including brain injury and mental illness, addressed by Jim Kuemmerle, the new Armstrong-Indiana Mental Health/ Mental Retardation Commission executive director; and autism, discussed by Joanne Migyanka of Indiana University of Pennsylvania, Regina Geesey of the ARIN Intermediate Unit and Mary Nau of Community Health Connections.
Speaking on the deaf and hearing impaired will be Annah Hill, an IUP instructor in the field, while the blind and visually impaired will be represented by Melissa Adams of the ARIN IU.
Developmental delays and mental retardation will highlighted by Sandy Shertz, with the Office of Developmental Programs. Darryl Bergstrom, of the Warren Health Care Quality Unit, will discuss physical disabilities and cerebral palsy.
Rounding out the presenters will be Mary Grattan, a representative from the Epilepsy Foundation, who will talk about the disorder.
One local family knows well the obstacles and tribulations that epilepsy presents. Don and Pauline McCormick, of Indiana, watched their daughter, Julie, battle with the disorder for years before she succumbed to injuries as a result of a car accident.
Since Julie's death, the McCormicks have worked to raise money for the Epilepsy Foundation through an annual fundraiser in Julie's honor.
But it wasn't epilepsy Julie McCormick died of, at least not directly.
Julie wasn't diagnosed with the disorder until she was in her late teens, although her parents suspect she presented symptoms much earlier.
When Julie was four years old, she spent a few days in the hospital after suffering what doctors then called a febrile seizure, usually brought on by a high fever in kids age 2 or younger.
The McCormicks were told by doctors that a febrile seizure doesn't typically reoccur, and treated it as a fever. And Julie didn't have a seizure reoccurrence for over a decade, until she was 17 years old.
Don McCormick was at home one evening waiting for his daughter to return from sled riding with friends. When Julie came through the door, she started talking to her father, but he noticed that she wasn't making any sense.
"I didn't know, at the time, what was happening," he recalled. "I was trying to make sense of what the problem was."
Julie went to bed, and the next morning, Don McCormick got up early to go hunting. Throughout the day, though, both Don and Pauline McCormick were baffled by Julie's behavior. She continued putting together words incoherently, and every once in a while, would stare off blankly into space.
Troubled and unsure of what could possibly be wrong, the McCormicks decided to take Julie to the emergency room.
The ER workers asked a question that had also been nagging Don McCormick: Was it possible that someone could have slipped something into her drink the night before•
An EEG put that question to rest, yet opened up a whole new realm of worries for the McCormicks--it showed seizure activity in her brain.
"That's when the doctors decided it was epilepsy," Don McCormick said.
Which meant that she had to have her driver's license revoked, a terrible blow for a newly licensed teenager.
The McCormicks were devastated by the diagnosis, but were determined to support their daughter in any way possible.
"It was scary," Pauline McCormick acknowledged.
"We didn't know too much about it," Don McCormick said. "We just thought we'd do anything we could to help her."
For the first week after the diagnosis, Julie missed a few days of school, unsure of what to tell her friends.
"After that, though, she was pretty open with it," Pauline McCormick said.
Her doctors worked to find the right blend of medications to keep her seizures at bay. After a while, her medications were adjusted to the correct levels.
Don McCormick explained a person diagnosed with epilepsy must remain seizure-free for six months before they can have their driver's license returned.
Julie's medication worked, and she eventually was able to drive again. A "very intelligent girl" according to her parents, she graduated from Indiana Area High School in 1996 and was accepted to Penn State's Altoona campus to study international business.
"It was definitely scary sending her off to school," Pauline McCormick said.
Without even applying, Julie was accepted into the campus honors college. But a reoccurrence of seizures, paired with the lack of concentration that can be a side effect of the anti-seizure medications she was on, brought Julie home from college.
After she turned 20, Julie moved to Georgia, where she took a job in management at a retail store and lived for six years. She eventually returned to school, taking classes in digital media at the Art Institute of Atlanta.
In November 2005, Julie returned to Indiana, renting a house just a few miles down the road from her parents, much to their delight.
"We believe that was God's plan, to bring her back to us so that we could have that last month with her," Pauline McCormick remarked.
She got a job working at Indiana First Bank, where her employers were very sympathetic to her state of health, giving her days off after she would suffer seizures that would always leave her physically and mentally drained.
Then, less than two months after she moved back to Indiana, Julie wrecked her car on the way home from her parents' house. She had veered off the road and into a tree.
She was rushed to Indiana Regional Medical Center, where hospital workers called the McCormicks, told them what happened, but said that Julie was fine and that they shouldn't hurry. Her only injury was that she had hit her head.
The McCormicks rushed to the hospital anyway, where they were able to talk to Julie. She didn't recall the accident, but in conversation with her parents, she began to repeat herself.
After a CAT scan, she was sent to Conemaugh Hospital for surgery for her head injury. But Julie never recovered from the operation. She died Jan. 8, 2006, at the age of 27.
Doctors later were unable to determine if a seizure is what caused her to careen off the road, but her parents ultimately believe that's what happened.
Julie wasn't driving at a an excessive speed, and a witness to the accident said she never slowed down, never hit the brakes, and Julie didn't ever remember wrecking the car.
But, from the tragic end of Julie's story came a tale of hope. Her driver's license indicated she wanted to be an organ donor, and officials found a recipient for one of her kidneys.
"We knew her," Don McCormick said of the recipient, noting it was a woman who lived just a few miles down the road from their home.
"And it wasn't planned," added Pauline McCormick. She said the woman later told her, when she found out her donor was a young woman who died at Conemaugh Hospital from injuries in a car accident, she knew right away who it was.
Epileptic seizures can be triggered by any number of factors, including stress, lack of sleep, flashing lights and overexcitement.
Julie had what are called complex-partial seizures (previously known as petit mal seizures), considered less violent than grande mal seizures.
The complex-partial type are represented by blank stares and unintelligible conversation. Julie would also fidget with her clothing and chew on her tongue when she seized.
"You could talk to her, but most of the time, she couldn't recognize that she could hear you," explained Don McCormick. "You wished there was something you could do."
"It was very scary, when you'd see her having a seizure," Pauline McCormick said. Afterward, "She'd have to go to bed. It would just drain her. And she didn't always remember having a seizure."
Julie's epilepsy was mild compared to the experiences of many children and adults with the condition. Some may suffer as many as 300 seizures a day.
"If you'd know her, you probably wouldn't even know that she had epilepsy," remarked Don McCormick.
Oftentimes, the anti-seizure medication Julie would take caused her more discomfort than the epilepsy. She experienced jitteriness, lack of concentration and malaise. It also made her poker-straight hair curl and sometimes fall out.
"But she never complained," Pauline McCormick said.
The McCormicks' involvement with the Epilepsy Foundation of Western/Central Pennsylvania began shortly after a family friend, Joe Frye, owner of the Rose Inn in Ernest, and Don McCormick's brother, Rick, suggested planning an event in Julie's memory, to help raise money for epilepsy victims and research.
The McCormicks decided to try a wiffleball tournament, with help from family and friends, including Julie's younger brothers--Justin, 28, of Pittsburgh, and Joshua, 27, who lives in Oregon.
In March 2006, just two months after her death, the first annual Julie McCormick Memorial Rose Inn Wiffleball Tournament was held.
Ten co-ed teams of six competed in the two-day, double elimination event. That year, more than $1,800 was raised for the Epilepsy Foundation, through tournament entrance fees, T-shirt sales, a 50/50 and basket raffles and personal donations.
The following year, 12 teams raised $4,000; and this year, 14 teams generated in excess of $6,200. Other fundraisers this year brought in additional funds, including a raffle for Steelers tickets that were donated to the McCormicks, placing the 2008 grand total above $11,000.
"It's not just us," Don McCormick emphasized. "There are so many people that help."
At every tournament, a representative from the Epilepsy Foundation office in Pittsburgh has provided information on the condition.
The Epilepsy Foundation sponsors a number of events for epilepsy victims, including Camp Froggy for kids, as well as adult camps. It also funds research and helps cover hospital and medical costs for families affected by the disorder.
There is no cure for epilepsy, Don McCormick pointed out, but most people can control the symptoms through medication.
"She was never ashamed of her epilepsy," Pauline McCormick said of her daughter. "It probably concerned us more than it did her."
"She just wanted to live a normal life," added Don McCormick.
That's the case with most people living with a disability. They want to be treated as everybody else, and the Disabilities Awareness Workshop is hoping to achieve that for the county's disabled citizens.
For more information about the workshop and its aim, e-mail email@example.com. For more information about the workshop's sponsor, the Community Disability Awareness Workgroup of the Arc of Indiana County, call 724-349-8230.
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