In what seems like a lifetime ago, Jay Perino was a truck driver, hauling tankers of gasoline for a fuel company. He lived an over-the-top active lifestyle, cycling on his mountain bike, taking Mixed Martial Arts classes, exercising and lifting weights, and riding his Harley Davidson motorcycle.
But on October 10, 2008, as he finished up cutting wood with a chainsaw at a friend’s house, Jay was stricken with an excruciating headache and his speech began to slur. A clot had broken loose from his right carotid artery and lodged in the right side of his brain. Jay Perino’s world crashed in around him. Life as he knew it slipped away, as he began a desperate battle to survive a devastating ischemic stroke.
Jay was lucky his friends were with him, because one of them recognized what was happening. Thirty-eight-year-old Jay was “life flighted” to the University of Pittsburgh Medical Center (UPMC) Presbyterian, an acute care hospital in Pittsburgh, Pennsylvania. Doctors administered a drug to break up the clot, but when that failed to work, Jay’s brain began to swell and doctors were forced to remove a portion of his skull to relieve the pressure (the skull portion was frozen and reattached at a later date).
Jay’s prognosis was very poor. He was paralyzed on the left side of his body, and he had a tracheotomy tube in his throat and another tube in his stomach. His memory wasn’t working. He was aphasic and he couldn’t think properly. But, against all odds, Jay survived. Once he was no longer critical, he transitioned through various stages of in-hospital rehabilitation.
Jay received physical, occupational, speech and water therapy at three different facilities around the Pittsburgh area. He says that two of his therapists were particular godsends. One especially caring speech therapist was able to get Jay swallowing, and therefore eating again, while a particularly skillful physical therapist coaxed his neck back into a straight position. With tremendous effort, Jay made steady progress.
But not everything went well. At one point, Jay seemed to give up. His weight plummeted, his attitude soured and he refused to cooperate with his therapists, so with his rehab in “stall mode,” his parents brought him to their house where they could care for him. While there, he received home therapy, but his bad attitude persisted until one day Jay just began to snap out of it. At that point, things started to get better.
Jay graduated to out-patient rehab, where he continued physical and water therapies. He also received Botox injections to relieve spasticity, and he began to visit his Mixed Martial Arts (MMA) coach regularly to get help with stretching and moving. His new post-stroke life started to take shape.
But, Jay struggled with many post-stroke residuals (and still does to this day): trouble speaking, left arm and hand paralysis, left leg impairment, hip pain, concentration problems and impaired balance. All of these problems have kept him from resuming his old job. Instead, his on-going rehab has become his “new job.” He exercises at home, continues weekly physical and aqua therapies, and still has his MMA coach help him stretch and move. He also does squats to strengthen his legs, and attends a weekly wellness program at UPMC, where he works on three different exercise machines.
In addition to these physical activities, Jay volunteers time to his church, occasionally helping to deliver meals to a local shelter. His church also has a monthly painting class that he tries to participate in, mostly for socializing. He is also as a member of the Lions Club. He sometimes volunteers to help at special events.
In fact, Jay counts this volunteering as one of his greatest post-stroke achievements, along with learning to walk again, reaching out to encourage fellow patients at rehab, and being asked, on several occasions, to speak to Occupational Therapy students at the University of Pittsburgh.
Despite these many victories, Jay says that it’s difficult to accept being dependent upon others, especially to drive him to different places. He’d like to begin driving once again, and has made this one of his long-term goals. Another challenging goal that Jay has set is to become a Physical Therapist Assistant or Aid. Having been through a stroke, he feels that he could be a valuable asset to a rehab team.
Jay credits his parents with helping him get his life back in order; they’ve been by him every step of the way. Even though Jay is married, his mother’s been his primary caregiver. She takes him to most of his therapies and is constantly looking for ways to help Jay get better. The other bright spot in Jay’s life is his Himalayan kitten, Fabio, which brings him lots of enjoyment and happiness.
Unfortunately, most of Jay’s other pre-stroke relationships are no longer intact. Many old friends have deserted him. He states that a stroke is a hard way to learn who your true friends really are. And, his marriage had rough spots before his stroke, so it’s no surprise that it couldn’t survive the extraordinary stresses that come with such a life-changing event. Jay’s spouse of 16 years works full-time and raises their 13-year old daughter. She also handles the household and medical paperwork and all the bills but, sadly, she’s filed for divorce. Jay feels isolated from his daughter, as well. He says she’s at an age where she doesn’t acknowledge him very much, a situation that hurts him very deeply.
Jay is fast approaching the five year anniversary of his stroke event. He’s had a grueling journey, but overall, Jay feels his stroke has changed him for the better. Among other things, he feels he’s now more outgoing and confident. He networks with other stroke survivors in a stroke support group in Pittsburgh, and keeps in touch with fellow patients he’s met through rehab.
Jay would be happy to share his perspective on stroke recovery. He can be reached via
the Stroke Network. His user ID is “Harleyguy.”