What It’s Like to Live for 15 Years After a Stroke
Yvonne Honigsberg had a stroke at 41 while running on the treadmill at her gym.
She was unable to speak, but people at the fitness center saw her distress and called 911.
Strokes have risen steadily among people in the United States under the age of 45 since 1995, along with risk factors such as obesity, diabetes, and high blood pressure.
But treatment is improving and many, like Honigsberg, can go on to live independently.
“There’s been a massive change in stroke care in the last five years,” Alexander A. Khalessi, chairman of neurological surgery at the University of California San Diego Health, told Heathline.
During a stroke, part of the brain is deprived of blood.
Once, hospitals could only provide blood thinning medicine, the sooner the better. Now, there are surgical interventions possible during the stroke and afterward — better ways to help patients restore their functioning.
More young survivors
About 10 percent of all strokes in the United States occur among people 18 to 50 years old.
From 2003 to 2012, hospitalizations of women ages 35 to 44 for acute ischemic stroke, the most common kind, rose by 30 percent and 41 percent for men in that age range.
Childhood obesity may be pushing strokes at even earlier ages.
In that same nine-year period, strokes among U.S. women ages 18 to 32 also jumped by a third and by 15 percent for men.
With decades ahead of them, young stroke survivors face all the usual challenges of nurturing love and purpose while maintaining their health and finances.
“Unrecognized depression is a key issue in getting back to their lives,” Khalessi told Healthline. “People need appropriate psychiatric care.”
In a key Dutch study of 18- to 50-year-old adults hospitalized for stroke between January 1980 and November 2010, nearly 45 percent had “poor functional outcome,” after an average of almost 14 years of life post-stroke.
But that also means that more than half were doing better.
A strong support system and meaningful work and fun are keys to thriving.
One woman’s story
Sunita Dutta has lived for 16 years after her unexpected stroke
Sunita Dutta is happier today at 44 than she was before her stroke at 28.
“I do not have a lot of money but I feel good about myself,” she told Healthline.
Six months before her stroke, she couldn’t see out of half of one eye for about 20 minutes. She saw an ophthalmologist who guessed she’d had a migraine.
One morning in July, she woke up and couldn’t brush her teeth with her right hand. She called her father, a doctor, who told her to get it checked out.
Dutta, a lawyer, said she’d wait until after the deposition she needed to take that afternoon. But when her father asked her to write down a phone number, she couldn’t do it, and he told her to call 911.
For the next 10 days, she was in a hospital on a blood thinner when she had a second stroke and couldn’t talk or walk.
It turned out that Dutta had a rare autoimmune disorder that affects the blood.
Coworkers and friends from childhood rallied around her. Dutta lived with her father for a year and also had the help of a part-time caregiver.
She experienced aphasia, language difficulties that often follow strokes. Her speech came back slowly and she had trouble finding vocabulary words for about four years.
She now walks with a limp and her right hand shakes. Dutta has trained herself to use her left hand.
Dutta asked her law firm to let her return part time, but there was no part-time role at the firm. She has about 60 percent of her former income through Social Security disability payments and payments from the law firm’s disability policy.
She returned to school for a master’s in public administration but began having symptoms of lupus, another related autoimmune problem, as well.
She found an administrative job and faced a difficult choice: If she worked for more than a year, she would lose her disability eligibility. Lupus flares up unpredictably, so she quit to keep her insurance.
“I know a lot of people who want to go back to work, but the way Social Security and private disability insurance works makes it hard,” Dutta told Healthline.
“All of my contemporaries and friends my age were getting married and getting promoted at work. I had nothing to look forward to. But I refused to get depressed and stay home all the time,” Dutta said. “So I started to apply for various organizations to volunteer.”
Dutta now serves on two boards, including the board of the Center for Independence for the Disabled in New York, and volunteers in the court system for six hours a week from home.
“I started to realize I can really help people,” she said. “I also became friends with a few people who had strokes around my age. That helped my confidence as well.”
When she set up an online dating profile, she included the sentence, “I am amazed at how far I’ve come since having a stroke in 2001.”
She met lots of men “who don’t have an issue” with her disability and has currently been seeing someone for four months.
A paramedic’s story
Avi Golden was working as a paramedic when he suffered a stroke
Avi Golden was a New York City paramedic about to start medical school when, at the age of 33, he had a stroke during a heart surgery in 2007.
Two years later, despite difficulty speaking, he began appearing in shows at the Adler Aphasia Center in Maywood, New Jersey, and starred as Tevye in “Fiddler on the Roof” and the Beast in “Beauty and the Beast.”
Although he still has balance problems and weakness on the right side of his body, he graduated from a wheelchair, to a cane, to walking unassisted.
He helps paramedics at two hospitals and participates in training sessions about aphasia for police, firefighters, and emergency medics.
He also organizes sports trips for people with disabilities — rock climbing, kayaking, and the like.
To achieve as much function as possible, Avi devotes hours every day to speech therapy.
Along with traditional post-stroke physical and occupational therapy, he’s tried acupuncture, tai chi, yoga, water therapy, computer games, and special speech software.
Get help quickly
Younger victims are less likely to suspect stroke and rush themselves to the hospital.
Even when they go, they may be misdiagnosed.
In a study with data from 2001 to 2006, 8 of 57 patients ages 16 to 50 were sent home without proper treatment after a misdiagnosis of vertigo, migraine, alcohol intoxication, seizure, inner ear disorder, or other problems.
People with stroke symptoms may also resist going to the emergency room, saying they feel fine.
“You can say ‘move your right arm’ and they can’t do it and won’t be worried that they can’t do it. They’re no longer aware of that side of their body,” Khalessi told Healthline.
Observers should insist.
People should also go to the emergency room even if their symptoms improve, Khalessi noted.
You may have had a transient ischemic stroke, a red flag that another stroke may be on the way.
Don’t wait if you experience or see the following symptoms:
- sudden numbness or weakness of the face, arm or leg, especially on one side of the body
- sudden confusion, trouble speaking, or understanding
- sudden trouble seeing or blurred vision in one or both eyes
- sudden trouble walking, dizziness, or loss of balance and coordination
- sudden severe headache with no known cause
The medical outcome for young stroke patients is improving, Khalessi noted.
“Neurosurgeons are beginning to implant stem cell lines in the brain,” he said.
There’s also a device the size of a matchstick called a “stentrode” that can be implanted in a major vein in the brain and “capture electrical signals responsible for movement.”
Making treatment choices
Yvonne Honigsberg worked hard to regain her speech after her stroke
Honigsberg still doesn’t know why she had a stroke.
Today, she limps, uses one hand, and speaks clearly — but not the way she used to.
Medicare covered only a limited number of therapy visits per year, so she chose speech therapy and therapy for her arm and hand, rather than her leg.
Recovering her speech took speech therapy three times a week for a year and a half, twice a week for another four years, and she’s currently at once-a-week visits.
After her stroke, her sister moved into her studio apartment for four months.
Honigsberg, who once worked long hours as an acquisition editor, now has a busy yet flexible schedule of volunteer work.
“I would want to try working but I don’t know if I could actually do it. I have cognitive problems. I can’t focus on a task for very long and forget what I’m doing in the middle. And I would lose my disability benefits,” she told Heathline.
Another problem is finding employers who will adapt jobs.
“Here these young people have the potential to work for another 30 or 40 years and they want to contribute but they can’t find work that will be adaptable to their disability. Employers feel they won’t be able to do the job,” Ellayne Ganzfried, former executive director of the National Aphasia Association, told Healthline. “And if they took a job and it doesn’t work for them, they’d have to reapply for their disability.”
Ganzfried sees people who find jobs “off the books” or start their own business to add to Social Security disability, and family support.
Avoiding a stroke
You can help protect yourself by getting at least two and a half hours of aerobic exercise a week, drinking alcohol in moderation, quitting smoking, eating less red meat and more vegetables, nuts, grains, and seafood, and treating high blood pressure, diabetes, and circulation problems.
But like Honigsberg, you may not have an obvious risk factor.
Post-stroke life requires lots of help and determination — like life even if you haven’t had a stroke.
“I’m starting new volunteer work and hope to build my confidence,” Honigsberg said.
When Golden visits stroke patients, he exudes enthusiasm: “I tell them not to give up.”