Ray Forsythe refers to the moment on Easter morning, 2015, when the challenges of surviving a stroke first truly dawned on him, as “the incident.”
“Not in my wildest dreams did I imagine someone like me being called ‘a stroke survivor.’”
— Former UCF offensive lineman Ray Forsythe
Two months earlier, the former UCF offensive lineman, who played for the Knights from 1993-94, had suffered a major stroke at the age of 41 despite being, as he says, “in the best shape of my life.” A lengthy stay in rehab had finally allowed him to return home a day before Easter, and he was eager to get on with his daily life — which meant on Sunday he’d prepare dinner.
That’s when the 6-foot-5, 320-pound Forsythe, whose hands once manhandled massive defenders, realized he could no longer handle a knife. Every time he attempted to carve the turkey, the knife fell to the floor.
Forsythe, who majored in what is now called interdisciplinary studies at UCF, walked out of the kitchen, away from his wife and six children. He sat in the bedroom wondering what more he’d have to do to be an active dad, a breadwinning husband, to simply be himself again.
“Not in my wildest dreams did I imagine someone like me being called ‘a stroke survivor,’ ” Forsythe says.
Thousands of people who have yet to hit midlife are wrestling with those same thoughts. While the vast majority of strokes in the United States occur in people age 65 and older, according to a study in JAMA Neurology, from 2003 to 2012, there was an increase of more than 30,000 patients hospitalized for strokes in people younger than 65 — accounting for an increase of roughly 30 percent. A number of factors can explain a portion of the increase, including population growth and changes to how diagnoses are classified, but the fact remains that people are having — and surviving — strokes younger than ever before.
And while certain factors can come into play, such as lifestyle, pollution, genetics and better diagnoses, there is no real profile of a stroke victim. It happens to toddlers and teenagers. To athletes and artists. It can happen to anyone, anywhere. For Forsythe, it happened at the mall with his family.
“I’d been cautious about the foods I ate,” he says. “I was going to the gym every day, spending time on the treadmill. As big as I am, my body fat was only 10 percent. The idea that I’d have a stroke … it’s almost five years later and it still doesn’t sound right.”
“I refuse to be stagnant, even with the lack of resources available for young stroke survivors,” Forsythe says.
Forsythe admits he’s blessed just to wake up each day and say: “Good morning.” His wife, Doreen, is a nurse and made sure he received immediate care following the stroke, including the two months at Brooks Rehabilitation in Jacksonville. But then he lost his job. The family had to sell their cars and downsize their home. His wife had to figure out how to get Forsythe to therapy, the kids to their activities, and herself to work.
All the things you never think about because it can’t happen to someone like me.
“I have one speed now — slow,” Forsythe says, referring to his speech as well as to the legs that once ran the 40-yard-dash in 4.7 seconds. “But I refuse to be stagnant, even with the lack of resources available for young stroke survivors.”
And so he has become an expert, not so much on why he had a stroke when he did, but on recovery. He started a support group. He attends seminars. He listens to stories from young stroke survivors trying to raise families and hold jobs, such as fellow Knight Rachel Groves ’05 ’10MS.
“Someone Like Me”
Groves, who earned a bachelor’s and master’s in nursing from UCF, remembers everything about June 3, 2016. First, the tingly fingers. Then the pop in her ear, followed by ringing. When she started losing her vision, her 4-year-old son called 911 for help. He would later say, “Mommy looked like a fish flopping out of water.”
According to study in Neurology, young stroke survivors face physical, emotional and financial challenges uncommon to stroke survivors who are past retirement age.
A nurse herself, Groves knew she was having a stroke. But at the age of 32? With two young children?
“I thought, ‘This cannot be happening to someone like me.’ ”
When paramedics arrived, Groves tried telling them exactly what was going on, but her speech had become so slurred they were convinced she’d been drinking. It would be the first of many frustrations. “You want so badly to get on with life, pursue your goals, and be productive for the people around you. But …”
You start to speak, but stop because the words are trapped between the brain and the mouth. You want to move from here to there, but it takes three times longer than it should. You’re willing to do whatever it takes to recover, but find nothing but brick walls and maybe a wheelchair.
According to study in Neurology, young stroke survivors face physical, emotional and financial challenges uncommon to stroke survivors who are past retirement age. Not only is diagnosis often more challenging, but once patients receive an accurate diagnosis, survivors and their families often face significant financial difficulties due to extended leaves from work or the inability to return to the work force at all during what should be their most productive years. That speaks nothing to the cost of paying for medical bills, fighting for continued rehabilitation services, or finding and paying for childcare.
“There shouldn’t be so many obstacles for someone who simply wants to be productive,” says Groves. “Sitting in a chair all day is not the answer.”
Just as daunting as the physical limitations is a system based on old assumptions rather than realities. In short, it’s set up for older stroke survivors, not young ones.
Forsythe and Groves connected after hearing each other’s stories at a stroke awareness event in 2018.
“The first few weeks after a stroke are crucial to restoring basic functions, but insurance companies heavily regulate therapy. Fortunately, my husband and I fought hard enough to get what I needed. But what about stroke survivors who don’t? What do their lives become?”
— Rachel Groves ’05 ’10MS
“Strokes create a chemical imbalance and symptoms of post-traumatic stress disorder,” says Forsythe. “But neurological care isn’t typically allowed as part of recovery. And what about disability forms? They’re difficult to fill out, especially for someone recovering from brain trauma. Then there’s the challenge of transportation because your spouse needs to work.
“My battles on the football field are not even close to what I’ve been through as a stroke survivor. I don’t want to sit at home and simply say I survived a stroke. That doesn’t do anyone any good.”
Groves similarly didn’t want to feel sidelined.
“When I left the hospital, they were going to send me home with a walker, and left me to figure out my own logistics for rehab,” she says. “At the time, I had the functional abilities of a toddler. I said, ‘No. I need to perform my daily activities and be a mom. Then I need to return to work if we’re going to pay the bills.’ I needed intense rehab, but we continually ran into resistance.
“The first few weeks after a stroke are crucial to restoring basic functions, but insurance companies heavily regulate therapy. Fortunately, my husband and I fought hard enough to get what I needed. But what about stroke survivors who don’t? What do their lives become?”
A shared frustration — and determination — is exactly why Forsythe and Groves decided to take their own initiative and launch Young Empowered Stroke Survivors (YESS) Foundation. They’re forming support groups, recruiting volunteers and raising funds.
In the meantime, Forsythe and Groves continue their own recoveries.
Groves can now kick a soccer ball around the backyard with her kids. But she also has a constant headache and occasional bouts with vertigo. Like Forsythe, her mental fatigue can be so severe it actually hurts.
Forsythe can now hold a knife well enough to cut vegetables, though maybe not a turkey. He walks without assistance — unless he’s at his son Stone’s football games at the University of Florida where he needs someone to push him in a wheelchair.
If you couldn’t tell already, Groves and Forsythe are driven. It’s why they’ve been able to relearn motor skills and speech. But both say they’d never be where they are today if they hadn’t learned to do something entirely new to them: Ask for help.
Through YESS, it’s a lesson that could benefit thousands of young stroke survivors just like them.
