Then she asked it again. And again.
The repetition was so bizarre that Amy’s mom called 9-1-1. Before help arrived, Amy had another frightening problem: she couldn’t see.
But by the time the EMS crew arrived, everything was back to normal. The paramedics figured she’d probably had a reaction to some medication she was taking and recommended rest.
No way, her mom thought. Fearing something more serious was happening, she drove Amy to an emergency room. During a two-hour wait, Amy called her father, who was out of state. She then asked to speak to her mother – yet another indication that something was severely wrong.
Amy was having an ischemic stroke. A CAT scan confirmed just how bad it was.
“I didn’t have one clot, I had a shower of clots,” Amy said. “It looked like someone had taken a pepper grinder to my brain with clots scattered everywhere.”
There were no warning signs.
At 45, her blood pressure and cholesterol levels were normal and she didn’t have a family history of heart disease or stroke. She maintained a healthy diet and regularly exercised, occasionally running 5K races.
The source of the problem may have been an undetected heart problem: a hole in her heart that she was born with, a condition known as a patent foramen ovale (PFO).
Amy was hospitalized for a week and needed about four weeks for her energy level to recover. She never required physical rehabilitation or speech therapy, though she continues to have memory problems.
“I have no recollection of the day of the stroke,” she said. “I have encountered family and close friends who reference events prior to my stroke that I can’t recall as well.”
Yet that couldn’t stop her from starting an exciting new chapter in life, one that embraced her new designation as “stroke survivor.”
Amy began a graduate program in organizational communications at Murray State in Kentucky. She focused her research on stroke in young people and ended up establishing YoungStroke Inc., a nonprofit organization called that advocates for research and support for stroke patients under 64 years old.
Amy is now a lecturer at Coastal Carolina University, and remains active with her organization and with the American Heart Association and the American Stroke Association. Living in Conway, S.C., an area considered the “buckle of the stroke belt” because of the high levels of stroke mortality, her passion for stroke awareness is especially important.
She played a key role advocating for the passage of South Carolina’s Stroke System of Care Act of 2011, testifying at committee hearings, meeting with key legislators and participating in numerous speaking engagements to promote awareness on need for legislation to health care providers and the general community.
Amy wants to see better data collection on stroke survivors to improve care and access to resources. She was surprised to learn that, unlike cancer survivors, stroke survivors don’t regularly have follow-up visits after six months or a year to see how they are coping or whether technological advances could improve their quality of life.
“The need to champion standardized data collection and annual stroke assessments in our country is very significant,” she said.
Stroke is the No. 4 killer of Americans and a leading cause of long-term disability. The American Stroke Association is dedicated to helping Americans prevent, treat and beat this disease.
Amy also works to raise awareness about conditions that can raise stroke risks, including diabetes, obesity and hypertension, issues that have become particularly prevalent among children in recent years.
“Even though you may not think that you’re at risk, if you have any of these other co-morbidities, you’re also at risk of stroke,” Amy said.
Amy enjoys collaborating with the American Heart Association and American Stroke Association, and the larger platform it offers to raise stroke awareness. A You’re the Cure volunteer, she was the American Stroke Association’s featured speaker during the Rally for Medical Research in Washington, D.C., last year. In conjunction with that, she appeared in a full-page ad in Politico Magazine and Roll Call urging restored NIH funding.
“My volunteer experiences with AHA have really helped to hone my advocacy skills and provided a national platform for me to voice my concerns around stroke in young adults in a way that I may not have gained access to as a small nonprofit on my own,” she said.
Photos courtesy of Amy Edmunds
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