GRAND RAPIDS, Mich. (WOOD) — Imagine being trapped inside your own body, fully aware of everything going on around you but unable to speak or move.
It’s a medical condition a West Michigan man has been battling since the start of the year, defying the odds with what has become a miraculous road to recovery.
Alan Quinn, 34, was diagnosed with locked-in syndrome after suffering a massive stroke at his house in Paw Paw on New Year’s Eve.
Before the stroke, Quinn and his family had never heard of locked-in syndrome, a rare neurological disorder in which the body is paralyzed except for slight movement of the eyes.
“I’ve read stories where husbands or wives are being told right there at the bedside, ‘The best thing for you to do is pull the plug,’ and the person that’s locked in is in their mind screaming, ‘No, don’t unplug me! I’m still here!’ because it is very hard to diagnose locked-in,” Quinn’s wife Catina Quinn said.
After the stroke, doctors prepared Quinn’s family for the possibility he would be permanently brain dead, but it just took one look for Catina Quinn to realize her husband was still with them.
“When I saw his eyes, I was like, ‘No, he is still there,'” she said about her husband, with whom she is raising five children.
She could see what the doctors couldn’t and was determined to prove to them her husband was conscious.
“I had asked him a question, ‘If you are still with us, blink two for no, one for yes,'” he recalled.
He blinked once.
After administering an additional series of tests, doctors diagnosed Alan with locked-in syndrome.
Helpless in his hospital bed, his wife created a system where they could communicate through blinking. She’d then write down words on a scrap piece of paper.
“How many letters?” Catina Quinn said would ask her husband. “Then I would say, ‘one, two, three’ and he would blink and I would (know) there were three letters.”
She said all too often, a locked-in diagnosis is seen as a dead end as recovery can be just as rare as the condition itself. Quinn’s doctors recommended he go to a nursing home after local rehab centers turned him away, seeing his case as a lost cause.
“They were like, ‘He’s got locked-in, there’s no hope, he’ll never get better, he’ll never have any kind of function,'” Catina Quinn said.
Determined to defy the odds, she got her husband admitted to Shirley Ryan AbilityLab, a specialty rehabilitation institute in Chicago. Soon, he would coin the nickname ‘Amazing Alan,’ impressing his medical team with every milestone from giving his first thumbs up to taking his first steps. In May, he returned home to West Michigan and continues to attend physical therapy twice a week at Mary Free Bed Rehabilitation Hospital in Grand Rapids.
Quinn is currently working on refining his speech and improving his mobility in and out of a wheelchair.
His wife said his neurologist no longer considers him to be in a locked-in state.
When asked what has led to his miraculous recovery, Quinn typed out just one word: fight.
“Fight,” his wife said. “Because you have to fight to make those new pathways.”