The Experience of Locked-In Syndrome

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.”

You can read more about Allison at StrokeSmart.org.

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