Stroke survivors find hope, understanding at Bay Shore hospital support group

In the 19 months since his stroke during a flamenco performance in Huntington Station, 64-year-old percussionist Benny Arocho has struggled to "feel" the staccato-like beats and rhythms that once had been second nature.

In the 13 months since a stroke derailed 18-year-old Quintin Folkes' standout senior basketball season at Connetquot High School, he's struggled to find others his age who can relate to a potentially fatal condition so rare in teens.

They both felt isolated — from family, friends, or the many others who tried to help, and understand what it's like to lose blood flow to the brain, and after that, how to face new physical and emotional challenges.

A place to open up

That changed after Arocho and Folkes learned about South Shore University Hospital’s stroke support group. Once a month, the group of about 10 regulars meets in person at an office across from the Bay Shore hospital to discuss how they are adjusting to life after their strokes, from ongoing struggles to strides toward recovery.

"I finally found some people who understand me," said Arocho, of Dix Hills, who last month attended his third meeting.

Folkes has attended only one meeting, as he is balancing studying accounting at SUNY Old Westbury and waiting tables at Brightview Senior Living in Sayville, but he hopes to free up time to attend the March session.

Hearing other stories of stroke recovery, Folkes said, helped him open up.

"Even though it was the first time I met them, I felt comfortable enough to tell them about my experience," said the Ronkonkoma resident. "It’s hard for me to explain what I’m going through to someone who hasn’t gone through what I went through."

Stroke and recovery

Recovery possibilities and timelines can vary depending on the type and severity of the stroke, as well as how soon someone receives emergency treatment, said Dr. Andrew Rogove, medical director of stroke services at South Shore University Hospital. He said the hospital sees more than 1,000 patients annually discharged after a stroke. While physical therapy is often necessary for a stroke survivor, he noted mental health resources, such as the monthly support group, are another critical component for recovery.

"There’s a substantial amount of patients who have post-stroke depression or other reactive issues to disabilities that may occur during strokes," Rogove said. "I think just being able to talk about it is very important, being able to see that you’re not alone and there are other people who are coping ... is very important in the overall recovery process."

Each meeting, which is free of charge and open to stroke survivors and caregivers, lasts about 90 minutes and typically begins with a probing question and ends with participants connecting over the unique repercussions of their common condition.

"A lot of our members actually don’t look like they had a stroke," but have unseen troubles, such as impaired memory or speech abilities, said Laura Telese, the stroke coordinator for South Shore University Hospital, who runs each session. Survivors can struggle with shame or embarrassment, Telese said.

Challenges ahead

Arocho, who had his stroke in Huntington Station in July 2023 while performing as part of a flamenco duo at Fogo de Chão Brazilian Steakhouse, can play music from memory, but said he can no longer feel the music or the rhythm. But like his speech, coordination and reaction time, all of which he said continue to improve week after week, this feeling could return with time.

"It feels right now like the recovery is going to take the rest of my life," Arocho said.

In January 2024, Folkes had a stroke due to a large vessel occlusion, meaning a blood clot blocked a major artery in his brain. This occurs in about 1 in 400,000 in children and teenagers, according to a 2022 study published by the peer-reviewed JAMA Neurology.

After the stroke, Folkes, a righthanded shooter on the court, said he felt as if he "had two left hands," when he tried to play basketball. He struggled to regain the speed that propelled him up from one hoop to the other. Although he made some progress as the months passed, Folkes underwent surgery earlier this month to close the hole in his heart, through which doctors believe the blood clot traveled to his brain.

Folkes said he hopes to attend more support group meetings to feel a greater sense of acceptance of not only his present, but his future.

"I’ll have to tell my kids’ doctors now that their father had a stroke when he was 17," he said. "That’s crazy to think about, but it’s just the way life goes. You just have to accept it."