Young stroke survivor Valerie Giglio’s long road back
Valerie Giglio Samson inched an evening glove up her arm, black satin from her fingertips to her elbow. She perched on the edge of a leather couch, legs crossed, hair coiffed, lips red.
Fifteen minutes to showtime.
It was a Thursday night in June as Giglio Samson, 43, prepared for “Chick Singer Night” at Johnny D’s in Somerville. It was her first performance in over a year. Last summer, just a week before the same event, the Stoneham resident suffered a devastating brain stem stroke that left her unable to walk, dress herself, or sing a note.
“Everything just happened in an instant,” Giglio Samson said. “You know, it wasn’t like I was sick or had any deterioration of vocal cords, it just literally went from being on the top of my game to zero.”
Giglio Samson had been healthy. She was young. She had graduated from the New England School of Law and founded a practice with her husband. She was a fencer, composer, violinist. She’d recorded jazz CDs in English and Italian and, for 10 years, she’d performed with the Al Vega Trio.
The stroke seemed like a fluke. And yet, strokes are far more common in younger adults than previously thought, according to Dr. Aneesh Singhal, vice chairman of neurology at Massachusetts General Hospital, who is developing the Stroke in Young Adults Integrated Care Program.
The clinical care program, for patients 13 to 55, would be the first of its kind and focus on what Singhal calls the “special needs” of young stroke victims, among them the fears, anxieties, and guilt that can inhibit them from moving on with their lives.
Of the 800 stroke patients a year that come through Mass. General, about 15 percent are adults under 49, Singhal said. The effects are often devastating, for the patients and their families. Symptoms can be missed or misdiagnosed because they’re atypical.
“In young people, even if they do recover, they don’t go back to work for some time due to factors such as anxiety and post-stroke fatigue,” said Singhal, who is also an associate professor of neurology at Harvard Medical School. “The psycho-social impact of having that stroke completely alters their lives and their family’s lives.”
The program will bring together medical professionals — cardiologists, social workers, nutritionists, geneticists, physical therapists, and others — to meet with young stroke survivors and their families to assess their broader needs.
Also to be considered, incidence of so-called “modifiable” risk factors for stroke and cardiovascular disease. In a 2013 paper, Singhal looked at data from over 200 stroke patients between 18 and 45 admitted to Mass. General during a five-year period. Despite their relative youth, he found high rates of hypertension, diabetes, and smoking among other risk factors. National efforts are also ongoing to improve the recognition, management, and prevention of stroke in young adults, he said.
“It’s not a new problem,” Singhal said, “just an under-recognized problem.”
For Giglio Samson, the only warning sign that something was terribly wrong was a sharp, burning pain that radiated along her collarbone and on either side of her neck.
At some point earlier in the week, she’d flopped over to look at the alarm clock and, without realizing it, tore both vertebral arteries. Incidents such as hers are called spontaneous dissections, said Singhal, who treated the singer. It is the most common cause of stroke in young adults.
That weekend, Giglio Samson woke from a nap and found the left side of her body frozen.
In the ambulance, she repeated her name and her address in her mind. She closed one eye, otherwise she saw double. Her left arm resembled a chicken wing — stuck tightly to her chest, bent at the elbow. In the Intensive Care Unit, on a cocktail of medications, she tried to sing “At Last.” It emerged like a howl.
“I was screaming . . . I couldn’t control the volume,” she said.
Her voice later returned high-pitched and thin. She had trouble reproducing melodies she knew perfectly in her head. Her left vocal cord was paralyzed.
She spent a week at Mass. General and then a month at Spaulding Rehabilitation Hospital that summer.
At first, a minute’s effort exhausted her, but over time she started walking several miles every day. Giglio Samson relearned how to maneuver her body with cardio and physical therapy. Her strength steadily increased. She taught herself to play the cello and practiced chords on the piano.
“I told my therapists this is not the real me,” Giglio Samson recalled. “I was dressed like a 90-year-old woman. I had white sneakers, a fanny pack, brace, a walker, and a baseball hat.”
Whether she was putting laundry away or brushing her hair, she made a point to use her left hand, weakened by the stroke.
“She came in so impaired, but she was determined,” said Nicole Burns, an occupational therapist at Spaulding Outpatient Center. “I knew how hard she was working outside of our sessions.”
Giglio Samson’s husband of seven years, Mark Samson, 38, slept in wheelchairs and on couches to remain by her side. He bathed her, dressed her, and cooked in the evenings.
They’d met on a blind date. He’d fallen in love with her singing.
“It was hard to believe if you’d listened to her videos pre-stroke,” said Jerome Kaplan, a speech language pathologist at Spaulding and Boston University. “It was like she was tone deaf.”
In September, Giglio Samson began meeting with vocal coach Vykki Vox once a week at The Real School of Music in Burlington. Her stamina was gone. She couldn’t finish most songs.
But over the months, her voice improved. She can carry a tune again, and her low register has gotten clearer. It remains a work in progress, one she’s committed to continuing.
“See how far you’ve come?” Vox says in the basement of Johnny D’s.
Giglio Samson concentrates on her breath. She makes a buzzing noise to warm up her vocal cords. She fidgets, chugs water, and then reapplies her red lipstick. Then she walks onto the stage before an audience that includes friends, family, and therapists. The jazz singer’s left hand sets the tempo like a conductor. She’s waited a long time to sing this love song.
“ . . . when she gets weary
Try, just try a little tenderness.”