The question is simple: What is epilepsy?
The Mayo Clinic says: “Epilepsy is a central nervous system (neurological) disorder in which brain activity becomes abnormal, causing seizures or periods of unusual behavior, sensations and sometimes loss of awareness.”
That’s a nice, clean, clinical explanation.
But epilepsy goes far beyond that neat-as-a-pin definition.
Epilepsy is making the gut-wrenching decision to take your 13-year-old daughter off life support after she suffers a fatal seizure in her own bedroom.
Epilepsy is dreaming about your senior year in high school, and having those dreams turn into a nightmare when you suffer a grand mal seizure in the locker room before the first game of the season.
Epilepsy is having your daughter beg you to never visit her classroom, because she is fearful her mom might have a seizure, soil her pants and embarrass a youngster who has seen this happen too many times at home.
“Epilepsy sucks,” said 44-year-old Stacey Perry, who was diagnosed when she was 4. “You’re catching me on a blunt, honest day because I had a helluva seizure at home last night and I almost canceled our appointment today.”
“I have two lumps on my head, bruises here and there, and I am sore as hell, but if I can make people aware of what epilepsy really is, I’m not going to miss the opportunity.”
Perry works hand in hand with Mark and Holly Brady, Oak Grove residents who founded the Purple Peace Foundation in 2012, after their 13-year-old daughter Amanda died following a seizure in her bedroom. Representatives from the Purple Peace Foundation will man a tent from 1 to 9 p.m. Saturday at the Grain Valley Fair.
“Last night, I’m at my home, flopping around on my floor, soiling my pants – and yes, you can put that in the paper – while my husband Marty, God love him, is doing everything he can to comfort me.”
“I’m 44 years old, and I cannot work outside of my home. I cannot go out to my mailbox unless someone knows I’m going out there. I can’t take a shower unless someone knows I am in the bathroom. I can’t drive. I often can’t go to a school function because I’m not feeling ‘right’ and even if I’m not actively having seizures, there is a strong possibility that I will. My family doesn’t want Mom to have a seizure for her sake as well as the disruption it causes to the rest of the attendees.”
“Welcome to my world of epilepsy.”
3 million diagnosed
Epilepsy is not rare. It can develop at any age, and more than 3 million Americans live with the disorder.
There is no known cause for epilepsy and there are more than 40 different forms of seizures – many of which can result in death. More people die each year from seizure-related causes than breast cancer (www.PurplePeaceFoundation.org).
Dr. Margo Block is well aware of the dangers of epilepsy, as she offers comprehensive general neurology care and treatment with a specialized interest in epilepsy.
She directs the NAEC Level 3 Epilepsy Center, which involves characterizing seizures using tools such as prolonged video EEG monitoring and treatment options using medication therapy and vagal nerve stimulation therapy.
When she first meets with a patient, she has these words of advice.
“There are so many different types of seizures that we have to establish if it was, in fact, a seizure at all,” Bock explains. “When a patient visits our office, we go through their history, because there are many things that sound like a seizure, but are not.”
Once it is established that the patient did suffer a seizure, the search begins for a way to manage the individual’s chance of having more seizures.”
“There are many ways to manage epilepsy,” Block said. “It is important to take good care of yourself – which means sleeping well, avoiding any triggers like excessive stress, not using alcohol or illicit drugs and taking medication regularly, which your doctor prescribes.”
“But there are many different triggers for epilepsy. It expands from genetic to brain injury, and there are so many people that we do not know the cause of what epilepsy is.”
Amanda Brady developed epilepsy as an infant.
“Once we found out Amanda had seizures, we dealt with it as a family,” said her father Mark. “It was a struggle, a struggle for our entire family.”
A struggle that ended on a tragic note that triggered a foundation that now helps people dealing with the same issues as the Brady family. Following Amanda’s death, the Bradys founded the Purple Peace Foundation.
“It was so scary for us,” her mother Holly said. “I was a teacher at the same elementary school Amanda attended when we lived in Georgia, and someone came running into my classroom saying that Amanda was having a seizure.”
“We got her to a doctor, and after that, she was nervous and embarrassed about returning to school. But she had an amazing group of little friends – I called them her ‘mother hens’ – and they took such good care of her.”
The family moved back to Oak Grove years after that seizure in the classroom, and six weeks before her 14th birthday, Amanda was not feeling well. She had an early morning seizure in her bedroom, and three days later her parents had to make the agonizing decision to take their daughter off life support.
“No one should ever have to go through that, to make that decision,” Holly said. “She had had a seizure at 11 the night before, but we were able to take care of her, and she was able to go to sleep.”
“But the seizure the next morning was not like the previous seizures. Her lips turned blue, and we could tell she could not get enough oxygen. We knew she suffered from seizures, but we never thought she would die from one.”
Mark nods in agreement and whispers, “No one – at least I don’t recall any doctor ever talking to us about that – no one.”
Sudden Unexpected Death in Epilepsy, or SUDEP, is a concern Dr. Block says everyone should be aware of.
“It’s really difficult to talk about,” Block said softly. “I had these books in my office, for patients, for many, many years – the name of the book is ‘Sudden Unexpected Death in Epilepsy Patients’ – and nobody will take them. Nobody wants them.”
“The reason we treat epilepsy, primarily with medication, is to prevent death. That is the No. 1 thing we are treating. That is the No. 1 thing we are trying to prevent is a premature death. It’s terrifying to think about, and I think that there needs to be a lot more awareness than there is. It is unpleasant so I think everyone has a tendency to not mention it.”
Although he had suffered from confusing issues with which he would find himself staring off into space, Jordan Whitworth never dreamed he would have to deal with the pain and embarrassment of epilepsy.
Whitworth was a ball boy for the Blue Springs High School football teams that rose to dominance in the early 2000s. He watched his brothers Justin (2001) and Luke (2003) play key roles in dramatic state championship victories.
“In high school, all I thought about was sports and girls,” chuckled Whitworth, who graduated from Blue Springs High School in 2007, attended Northwest Missouri State University and now works on the sales side of Thermo Fisher Scientific.
“But all that changed before our first football game my senior year.”
‘Part of who I am’
The Wildcats were at Park Hill, ready to open the regular season, when Whitworth suffered a grand mal seizure in the locker room.
“I’d never seen anything like it, it was so scary,” said former Blue Springs assistant coach Jared Barge, who is now the activities director at Winnetonka High School. “I was in the locker room and all of sudden, Jordan has the seizure – the type of seizure you think of when you think of something really bad.”
A medical team was soon helping Whitworth, who was diagnosed with epilepsy.
“My doctor told me I couldn’t play any sports, I couldn’t drive. It was tough, real tough,” Whitworth said. “To go from dreaming about your senior year in high school and doing all the things you had dreamed about since you were a little kid, to that – it was hard, real hard to deal with.”
Head Coach Kelly Donohoe took some of the disappointment away by making Whitworth a student coach on the team.
“I’ll never forget when Coach Donohoe gave me the same gear the coaches wear on the sidelines,” Whitworth said. “That meant so much to me. My family, my teammates and Coach D helped me get through a lot of that in high school.”
Thanks to love, compassion and soul searching, Whitworth’s dark and gloomy tale has a silver lining – one that changed his life in such a positive fashion that he now calls being diagnosed with epilepsy a blessing.
“I really see it as a gift from God,” Whitworth said. “Before the grand mal seizure in the locker room, I had all these seizures where I just stared off into space. We didn’t even know they were seizures.”
“Then I was diagnosed and I had to depend on my friends and family for everything. In college, I had this scooter/golf cart like thing I drove, and I got through it all.”
“But because of my epilepsy, my brother Justin is on the board of the Epilepsy Foundation for Missouri and Kansas. I am a youth pastor at my church, the Christian Assembly in Weston, Mo., and I talk to groups about what I had to deal with – and I think I have actually helped some people.
“Epilepsy is a part of my, a part of who I am, and it has helped my faith. I went from being scared to death, to finding medication that has helped me so much that I can now drive a car.”
“If there is any way I can turn this into a positive, I want to do it, and that is why I am so thrilled to be a part of this story. Maybe it can have a happy ending.”
The Purple Peace Foundation has several goals:
• Raise awareness about epilepsy in the metro area.
• Encourage epilepsy education in schools.
• Offer support and education to families living with epilepsy.
• Help individuals with epilepsy obtain technology and devices to detect seizures.
• Provide grants for individuals with epilepsy to attend specialized camps and training seminars.
Representatives of the foundation will man a tent at the Grain Valley Fair from 1 to 9 p.m. Saturday. More information is at www.PurplePeaceFoundation.org.