Ray Forsythe refers to the moment on Easter morning, 2015, when the challenges of surviving a stroke first truly dawned on him, as 鈥渢he incident.鈥�
鈥淣ot in my wildest dreams did I imagine someone like me being called 鈥榓 stroke survivor.鈥欌��
鈥� Former 麻豆原创 offensive lineman Ray Forsythe
Two months earlier, the former 麻豆原创 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, 鈥渋n the best shape of my life.鈥� 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 鈥� which meant on Sunday he鈥檇 prepare dinner.
That鈥檚 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 麻豆原创, walked out of the kitchen, away from his wife and six children. He sat in the bedroom wondering what more he鈥檇 have to do to be an active dad, a breadwinning husband, to simply be himself again.
鈥淣ot in my wildest dreams did I imagine someone like me being called 鈥榓 stroke survivor,鈥� 鈥� 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 鈥� 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 鈥� and surviving 鈥� 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.
鈥淚鈥檇 been cautious about the foods I ate,鈥� he says. 鈥淚 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鈥檇 have a stroke 鈥� it鈥檚 almost five years later and it still doesn鈥檛 sound right.鈥�
鈥淚 refuse to be stagnant, even with the lack of resources available for young stroke survivors,鈥� Forsythe says.
Forsythe admits he鈥檚 blessed just to wake up each day and say: 鈥淕ood morning.鈥� 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鈥檛 happen to someone like me.
鈥淚 have one speed now 鈥� slow,鈥� Forsythe says, referring to his speech as well as to the legs that once ran the 40-yard-dash in 4.7 seconds. 鈥淏ut I refuse to be stagnant, even with the lack of resources available for young stroke survivors.鈥�
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 鈥�05 鈥�10MS.
鈥淪omeone Like Me鈥�
Groves, who earned a bachelor鈥檚 and master鈥檚 in nursing from 麻豆原创, 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, 鈥淢ommy looked like a fish flopping out of water.鈥�
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?
鈥淚 thought, 鈥楾his cannot be happening to someone like me.鈥� 鈥�
When paramedics arrived, Groves tried telling them exactly what was going on, but her speech had become so slurred they were convinced she鈥檇 been drinking. It would be the first of many frustrations. 鈥淵ou want so badly to get on with life, pursue your goals, and be productive for the people around you. But …鈥�
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鈥檙e 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.
鈥淭here shouldn鈥檛 be so many obstacles for someone who simply wants to be productive,鈥� says Groves. 鈥淪itting in a chair all day is not the answer.鈥�
Just as daunting as the physical limitations is a system based on old assumptions rather than realities. In short, it鈥檚 set up for older stroke survivors, not young ones.
Forsythe and Groves connected after hearing each other鈥檚 stories at a stroke awareness event in 2018.
鈥淭he 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鈥檛? What do their lives become?鈥�
鈥� Rachel Groves 鈥�05 鈥�10MS
鈥淪trokes create a chemical imbalance and symptoms of post-traumatic stress disorder,鈥� says Forsythe. 鈥淏ut neurological care isn鈥檛 typically allowed as part of recovery. And what about disability forms? They鈥檙e difficult to fill out, especially for someone recovering from brain trauma. Then there鈥檚 the challenge of transportation because your spouse needs to work.
鈥淢y battles on the football field are not even close to what I鈥檝e been through as a stroke survivor. I don鈥檛 want to sit at home and simply say I survived a stroke. That doesn鈥檛 do anyone any good.鈥�
Groves similarly didn鈥檛 want to feel sidelined.
鈥淲hen 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,鈥� she says. 鈥淎t the time, I had the functional abilities of a toddler. I said, 鈥楴o. I need to perform my daily activities and be a mom. Then I need to return to work if we鈥檙e going to pay the bills.鈥� I needed intense rehab, but we continually ran into resistance.
鈥淭he 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鈥檛? What do their lives become?鈥�
A shared frustration 鈥� and determination 鈥� is exactly why Forsythe and Groves decided to take their own initiative and launch Young Empowered Stroke Survivors (YESS) Foundation. They鈥檙e 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 鈥� unless he鈥檚 at his son Stone鈥檚 football games at the University of Florida where he needs someone to push him in a wheelchair.
If you couldn鈥檛 tell already, Groves and Forsythe are driven. It鈥檚 why they鈥檝e been able to relearn motor skills and speech. But both say they鈥檇 never be where they are today if they hadn鈥檛 learned to do something entirely new to them: Ask for help.
Through YESS, it鈥檚 a lesson that could benefit thousands of young stroke survivors just like them.
