Posted by Lynn Bronikowski Jul 08 2016
Allison O’Reilly is on a mission—to talk to all who will listen about stroke.
She’s even written a book, Out of the Darkness, about her journey in stroke recovery.
“Most people don’t know about stroke or care about it until something happens,” said O’Reilly, who experienced a major stroke on Oct. 17, 2010. “But it can happen to anyone at any time.”
She was home alone when, at age 49, she had a stroke that left her with locked-in syndrome—completely paralyzed except for movement in her eyes and unable to speak.
“I did not meet the criteria for stroke,” said O’Reilly. “I’m not heavy. I never smoked. I didn’t have blood clots or high cholesterol. I had just had a physical two weeks prior and got a clean bill of health.”
She was locked in for two and one-half months—missed all the holidays—and was fed by a feeding tube until Jan. 6.
“I equate it to being buried alive because you know what’s going on around you but you can’t move or speak,” she said. “Locked-in occurs in one percent of strokes and most people die because it’s a terrible way to live.”
O’Reilly’s friends and her husband of 25 years, Kevin, would visit every day, sometimes spending the night.
“I had great support and that’s very, very important,” she said. “I believe I survived so I would be able to help other people because something good has to come out of this horrible thing.”
The O’Reillys have since moved from McLean, Va., to Naples, Fla., where she is active with the Stroke Recovery Foundation. She’s also in a clinical trial to see if a drug for MS would help stroke survivors with balance.
And, she’s on the board of the Stroke Comeback Center in Vienna, Va., which specializes in aphasia.
Her book is an outgrowth of an article she first wrote for the newsletter of the National Rehabilitation Hospital in Washington, D.C.
“I wrote the book because my doctor referred to me as his miracle because people who are locked in stay that way,” said O’Reilly. “I found it very therapeutic to write a book and it kept me busy because I always had worked and I really missed working.”
The former marketing professional now puts her efforts into fundraising, including helping to organize a sightseeing tour aboard the Naples Princess on Nov. 4 that will benefit the Stroke Recovery Foundation.
The foundation focuses on assisting stroke survivors—particularly younger adults and youths—to maximize their recoveries. It offers support and resources after traditional therapy and insurance reimbursement ends.
She’s also helping to organize a Caribbean cruise for Oct. 28, 2017 to Nov. 4, 2017 which will feature speakers and non-traditional recovery therapies for stroke survivors. Interested people can email her for information.
“Nobody wants to talk about stroke until, God forbid, it happens,” said O’Reilly. I know I didn’t know anything about stroke. Then it happens and you’re like a sponge and want all the information you can get.”
She recognizes that every stroke and every recovery is different.
“My doctor would ask me to come to the hospital to meet other people who were locked in,” said O’Reilly. “The first time it was hard but it’s good because I know exactly what they are going through and it made me thankful for how far I had come.”
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