New Mobility

People May 2004

Kate Adamson wants everyone to know young people have strokes, too. “People have the myth that it only happens to somebody who’s old and has gray hair,” says Adamson, who uses a wheelchair for long distances. “They’re so misinformed about people in their 30’s having strokes.”

A brainstem stroke left Adamson with “locked-in-syndrome” at age 33 in 1995, and because of her age, the doctors thought she had a brain tumor.  Even when she was correctly diagnosed, her doctors were certain she would die, so no rehab center would touch her. “My husband’s an attorney, and if it wasn’t for him, I wouldn’t have got the rehab,” she says.  “Sometimes you just need someone to scream and yell at the insurance companies for you. It can mean the difference between a recovery or not.”

Now Adamson’s an advocate with the American Stroke Association, sharing her story with others in similar situations. “I get contacted by family members of those with locked-in-syndrome,” she says.  “They want to know how I communicated and other things that don’t often get thought about, like soft music.” A nurse discovered Adamson could control her blinking while she was locked-in and helped her communicate with a letter board.

Because so few people survive locked-in syndrome, Adamson wrote a book about her experience, Kate’s Journey:  Triumph Over Adversity. It’s available through www.katesjourney.com or 800/641-KATE.