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Surviving Locked-in Syndrome

Posted by Teresa Bitler Aug 20 2015

On May 20, 2009, minutes after his wife had left for work, Richard Marsh realized he was having a stroke. What he didn’t realize was the stroke was only the beginning.

Unable To Move At All

When paramedics arrived at his house, Marsh was having difficulty speaking and maintaining his balance. By the time he got to the hospital, he could already feel paralysis creeping into his legs. He woke up in intensive care, hooked to a breathing machine and with “tubes all over.”

Although Marsh could feel and understand everything when he woke up, he couldn’t move a muscle. “The only thing I could do was blink, and that was just barely,” he says.

Locked Inside Himself

Marsh was experiencing Locked-In Syndrome, a rare condition that affects roughly one percent of all people who have a stroke, leaving them unable to move any muscles except their eyelids. There is no treatment or cure, and few ever recover any significant function. In most cases, Locked-In Syndrome is fatal—roughly 90 percent die within four months.

While he was trapped inside his uncooperative body, Marsh was completely aware of what was going on. “Your mind works perfectly,” he says. “Your body doesn’t.”

A 2 Percent Chance of Recovery

That’s why hearing his initial prognosis was so alarming. Marsh listened as the doctor, thinking he was in a coma and had only a 2 percent chance of recovering, suggested to his wife that she remove him from life support. She somehow knew Marsh didn’t want her to.

A neurologist confirmed her suspicions soon after when he asked Marsh to blink in response to a question.

The Road to Recovery

Marsh spent four months and nine days in the hospital and long-term care before he could go home. Today, 95 percent of his functionality has returned. He is able to take care of himself and complete most tasks.

“I really have very few limitations,” he says. “I’m very lucky.”

Hope for Others

Marsh has written a book about his experience, Locked In: One Man’s Miraculous Escape from the Terrifying Confines of Locked-in Syndrome, to give family and friends of those with Locked-In Syndrome hope. (It’s only available in the United States through Amazon.)

“I want them to know there’s always hope,” he says. “Don’t ever give up. They are still alive. They still feel, and they still think. It could turn around at any moment for them.”

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