ST. ALBANS — Incoming Bellows Free Academy (BFA) senior Brook Hodgeman has no memory of being five years old. Nor does he have any memories of his life five years after that. At the age of 10 he was diagnosed with juvenile absence epilepsy – a genetic condition that will last his entire life.
Before the diagnosis, Hodgeman didn’t even know something was wrong with him. He was playing golf with a few friends at a driving range, when his friend’s mother who happened to be a nurse, noticed something strange about his behavior. Hodgeman had paused midswing and couldn’t move.
“She saw me fling back and just pause for fifteen seconds, so she called my mom and told her that she thought I was having an absence seizure,” Hodgeman said.
His mother made an appointment at the University of Vermont Medical Center in Burlington, and that’s when Hodgeman had his first electronystagmography (EMG), a test that has now become a routine part of his life.
“I didn’t know what it meant for my life. I had never even heard someone mention the word before, other than I thought epilepsy meant you were on the ground shaking violently,” Hodgeman said.
Up until that point, Hodgeman had only experienced what is known as petit mal seizures. This is a form of epilepsy where one experiences very brief, unannounced lapses in consciousness. This loss of awareness is often accompanied by blinking or mouth twitching, but otherwise unnoticeable.
“It was almost like my brain would turn off for ten seconds at a time,” Hodgeman said.
It wasn’t until he was in seventh and eighth grade that he experienced his first grand mal seizure. This is what most people think of when they hear the word epilepsy and they are the most noticeable. The body stiffens, jerks and shakes all while the person loses complete consciousness, normally for one to three minutes. Hodgeman has experienced three of these types of convulsions in his lifetime.
Hodgeman was taking conventional epilepsy medicine upon diagnosis, but was still having trouble getting the condition under control. In 2012 he participated in two different studies at Yale University to help grow the knowledge of the condition in general. The researchers determined that even with the Depakote pill, a divalproex sodium tablet used to treat epilepsy, Hodgeman was still experiencing nearly 200 petit mal seizures a day.
“There were times when I would walk into a moving car, the cars thankfully stopped, but I walked into them and it freaked everyone out. I didn’t even know what was going on,” Hodgeman said.
As a concerned parent, his mother did some research on the Internet and found an interesting article about songs affecting people with epilepsy.
“That’s when Mozart saved my life” Hodgeman said with a laugh.
Scientific research has proven that classical music increases brain activity more positively than other kinds of music. Several studies have show that listening to this type of music may induce an improvement in the performance of certain kinds of mental tasks known as spatio-temporal reasoning. In 2001, a professor of the University of London further proved that the Mozart song K.448 can reduce the number and severity of seizures. Though research still lacks a “why,” it has been proven that Mozart’s music has a profound effect on the brain.
“I don’t know how it works, but it reduces seizures in some people and in some cases I think it’s been more effective for me than the medication. It makes no sense, but it works for me,” Hodgeman said.
Combined with vitamins, he started listing to the piano version of that song every single night.
“Since doing that combination I haven’t had a seizure, I’ve been so fortunate,” he said.
Hodgeman has been seizure free now for four years. He still listens to the Mozart song every night and says he even has trouble falling asleep now without it.
“That song kind of changed my life, and allowed me to move on and do the things I love, it’s been really important. Now, I really want there to be a push to get information like that out to people,” Hodgeman said.
Upon getting his epilepsy under control, Hodgeman has succeeded as both a student-athlete and a leader for his generation.
In athletics, Hodgeman excelled his junior year in Nordic skiing. In December, he was named in the Messenger as Athlete of the Week after placing second in a crucial race to help lead the Bobwhites to second place at Prospect Mountain in Woodford. Later in the season, Hodgeman went on to place top 10 in the Division I State Championships. He was also selected to the all-state squad by the Vermont high school Nordic ski coaches. When not competing in Nordic, Hodgeman also downhill skis, plays soccer in the fall, lacrosse in the spring and teaches and plays tennis all summer long.
“I’m almost always doing more than one sport a season, it’s a hectic life with that and school, but it’s good,” Hodgeman laughed.
“Without athletics I would have found it really difficult to stay happy. It’s helped me – I really just don’t know how to describe it – it’s just helped me so much I can’t explain it,” Hodgeman said.
It’s for this reason Hodgeman is currently working on an invention to help people with epilepsy ski. He’s created a prototype of a safety device used to hook people in when on the ski lift.
“The goal is to make these activities safer so maybe kids with epilepsy would be more willing to take part. It’s been shown when kids are diagnosed with epilepsy they are a lot less likely to participate in sports than their siblings. But exercise makes the brain perform so much better. It helps not just with the seizures, but helps with the secondary diagnoses that go with having epilepsy like depression,” Hodgeman said.
Hodgeman says the safety device still needs some work, but he’s hopeful one day he may be able to patent it.
The work Hodgeman has done towards making a difference in the lives of epilepsy patients stems far beyond sports. In 2016 he was chosen by the Vermont Epilepsy Foundation to represent the state at Teens Speak Up, a convention in Washington D.C. made up of 50 students from across the nation living with epilepsy. While there he lobbied staff members from the offices of Sen. Bernie Sanders, Sen. Patrick Leahy and Rep. Peter Welch to pass a bill to support funding of research on neurodegenerative diseases. The bill, known as the 21st Century Cures Act was signed into law in December 2016 and helps accelerate medical product development to give faster approval to new drugs and devices on the market.
Hodgeman was also selected for a biomedical sciences program at the Howard Hughes Medical Institute and the University of Maryland. This July he is working along with 19 other students from across the country to use CRISPR-Cas9 technology to modify genes. The work is being used to investigate genetic predispositions for disease- all with the hope to one-day find a cure for epilepsy.
Hodgeman’s passion for finding a cure is one he plans to continue to pursue as he completes his high school education and works towards college. It’s also what made him stand out among 247 other applicants from across the country for the 2018 CURE (Citizens United for Research in Epilepsy) scholarship. He was among just ten other students who were awarded $5,000 from the Education Enrichment Fund (EEF), a CURE program supported by Lundbeck Pharmaceuticals. The EEF Scholarship goes towards supporting coursework advancing personal knowledge in research, health education and advocacy in relation to epilepsy.
“This year’s recipients are all incredibly deserving and all shared a goal of furthering their education to enact a positive change within the broader epilepsy community,” Stacey Pigott, Chair of CURE’s Research Committee said.
Hodgeman certainly has made strides in changing the epilepsy community, with finding a cure the main motivation behind most all his ambitions. He plans to become a medical doctor with a second doctorate in the sciences, focusing on both research and patient care.
“The focus is on epilepsy and finding a cure. I want to do something where I’m helping people live with seizures. A cure would be the best case scenario, but I want to do anything possible to help make a difference,” Hodgeman said.
Though he’s been seizure free for the past four years, Hodgeman found out after a 24-hour EEG last fall that he will never outgrow his epilepsy. A fact that may have discouraged some but which he has taken in stride.
“You can’t let the epilepsy control your life. That’s the bottom line,” Hodgeman said. “Just do anything you can to pursue the things that you love to do.”