Stroke at 39 fuels 'Nurse Knuckles' to transform career

Because of her last name, Donulaé Knuckles has long answered to "Nurse Knuckles." Yet the grit and determination the name conjures fits, too.

Raised by a single mom in Detroit, she prioritized her education. Regularly studying deep into the evening, she graduated near the top of her high school class. She earned a full scholarship to the University of Michigan, where she earned a Bachelor of Science in nursing.

"Nursing is holistic work; it addresses the body, the mind, the soul and the spirit," Knuckles said. "And I am fueled by that."

Over the past 23 years, Knuckles has worked in cardiology, women's health, public health, nursing education, home care and case management. She also started a company that offers CPR, first aid and AED training.

Over that long career, Knuckles has educated many women about the signs and symptoms of stroke. Then, she had one herself.

After a long day at work in 2014, Knuckles – who was 39 at the time – came home and experienced sudden visual changes. She felt like her mouth was going numb; she had just put a lollipop in her mouth from her children's leftover Halloween candy and wondered if it had been poisoned. She asked her daughter, then 11, to call 911.

"I felt my life slipping away," Knuckles said. "I knew that if I didn't get help right away, I would die."

It wasn't until she was in the emergency room that she realized she'd had a stroke. "Doctors didn't understand why, because I didn't have uncontrolled hypertension, diabetes or any of the risk factors."

An echocardiogram revealed the source of her problem.

She had a congenital condition known as a patent foramen ovale, a hole or opening between the upper chambers of the heart. PFOs close in most infants within a few months after birth, but that's not the case for about 25% of people.

The most likely reason for her stroke was that a clot crossed the opening and traveled to her brain, said pediatric cardiologist Dr. Tom Forbes, who later performed the surgery to close the hole.

It's not clear, he said, why some people with PFOs have strokes and others don't. Despite specializing in pediatrics, Forbes' experience in fixing PFOs in children leads him to treat many adults who discover they have the defect.

Before the hole in her heart could be surgically closed, Knuckles needed to recover from the stroke.

For the first few days, the right side of her face drooped. She experienced double and quadruple vision that persisted for a couple of months.

The cognitive issues that persisted after other problems had resolved were her biggest worry. For example, she had trouble finding more than a few words in the simple search puzzles the occupational therapists gave her.

But true to her nickname, she refused to accept that limitation, working on the puzzles whenever she had a chance and noting the date, start time and end time at the top of each word search.

She soon realized she was finding more words in less time.

Just over a month after her stroke, Forbes used a device to do what nature hadn't and closed the opening in her heart.

At first, Knuckles said she felt ashamed about her stroke. That changed when a fellow nurse invited her to attend a local stroke camp. There, Knuckles shared her story with other survivors and realized the impact she could have.

"I left there saying, 'I'm a stroke survivor, and it's OK!'" she said.

Concerned the stroke camp's registration fee would prevent others from attending, Knuckles soon founded Love Yourself for Life, which celebrates American Heart Month in February with an annual fundraiser to pay the registration fees for stroke survivors, their family members and caregivers.

She most recently gave up a job as a case manager in children's special health care services to become a full-time student and graduate teaching assistant at Wayne State University in Detroit. She's working on a doctorate in nursing, which she hopes to use to reduce health disparities and help nurses have a greater voice in public policy and health communication.

"I don't see enough nurses in political positions where they can make a real impact on the communities they are serving," she said.

The American Heart Association invited Knuckles to the state capital, where she shared her story with Michigan lawmakers. Later, she teamed with a state senator to designate May as Stroke Awareness Month in Michigan.

"My purpose in life is being fulfilled," Knuckles said. "I am so grateful for how my life is unfolding; the best is yet to come."

Stories From the Heart chronicles the inspiring journeys of heart disease and stroke survivors, caregivers and advocates.

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