Trapped in Your Own Body

Those with Locked-in syndrome are alive, but can't communicate.


Jan. 31, 2007— -- Imagine lying inert, unmoving, totally paralyzed -- and your only way of telling people "I'm not dead!" is the tiny blink of one eye. Imagine hearing the doctors call you a vegetable, and you can't even whisper back, "I'm still here."

Welcome to a rare world of patients "locked in" to bodies that have become prisons. Steve Chiappa of Toms River, N.J., lives with this medical mystery. And so does Glenda Hickey of Leduc, Alberta.

Glenda Hickey's nightmare began on the morning of Jan. 21, 2000, with the worst headache she had ever experienced. When the mother of two little girls picked up the phone to call her husband, Kevin, at work, she fell to the floor, suffering a bad nosebleed. Glenda's daughter Kaitlyn -- not 3 three at the time -- tried to help.

"I found all these Band-Aids, and I tried putting it all over her face so the bleeding would stop, " Kaitlyn explained.

Meanwhile, as 1-year-old Kennedy slept in her crib, Kevin, Glenda's husband, kept getting a busy signal as he repeatedly phoned the house.

"And it's busy, busy, busy, busy. So, I was getting kind of mad by about 11:30 thinking, you know, 'What the heck is she doing?'" he said.

Kevin finally called a neighbor to check on his wife, who found Glenda motionless on the floor. When Kevin got home he found Glenda unable to speak, move or even indicate that she was conscious.

"She just couldn't respond," he said. "We didn't know what she was doing or thinking. We couldn't figure it out."

Cindy and Steve Chiappa were high school sweethearts, who found each other all over again in their 30s. Their fairytale love story turned into a nightmare on the way to a Christmas Eve dinner, when Steve suddenly felt ill.

Cindy took one look at her husband and dialed 911. At the hospital the doctors told Cindy the situation was critical.

She said that doctors told her, "He's not going to ever eat, ever walk … maybe he'll open his eyes. He is not going to be more than a vegetable."

Steve and Glenda were both active, healthy people struck down in a flash -- unable to move or respond. What had happened to them?

It turns out they had a condition so rare that only a few hundred cases are known worldwide. It's called locked-in syndrome, and it's caused by a massive stroke different from other strokes in both its location and severity.

The syndrome is so difficult to diagnose that doctors often believe their patients are vegetables when they are not. People with locked-in syndrome can see, hear, feel and understand everything. They just can't move.

In Steve and Glenda, a blood clot had worked its way deep into the brainstem, the area of the brain that functions as a kind of relay station between our thoughts and our actions. The brain -- still conscious and alert -- can keep issuing commands, but the body can no longer follow them.

Dr. Stanley Tuhrim, who runs the stroke center at Mount Sinai Medical Center in New York, says the consequences can be absolutely devastating.

"The patient is unable to move any of their extremities," he said. "People with the classic locked-in syndrome are basically only able to blink their eyes, so they're able to think, but they simply can't communicate."

Glenda Hickey remained totally unresponsive, even after an operation to remove the clot. But Kevin had a powerful intuition.

"I knew that she was there and mentally cognitive," he said.

Steve Chiappa was also locked in, but no doctor suspected. Imagine how Steve felt as he listened to one of his doctors suggesting to Cindy that they disconnect his pacemaker, implanted years before. Cindy said she remembered that moment well.

"[The doctor] said, 'Well, if we change the batteries and don't necessarily connect the leads, then if something happens, it happens, and that might be an easy way for him to go,'" she said.

It made her furious, because Cindy believed Steve was still there.

"I was dumbfounded. I was pissed. I was really angry," she said.

Cindy thought her husband was blinking at her in response to her questions. The doctors thought those blinks were just reflexes, but they were wrong.

Five years later, Steve can recall everything that happened around his hospital bed.

"One of them said, 'He's nothing but a vegetable,'" he said.

Steve has painstakingly learned to speak again. Now he calls himself "a thinking vegetable" as a joke.

Steve -- like some locked-in patients -- has recovered a little movement, which makes a big difference in his life. With one touch of a universal remote he can control the TV, lights, stereo and -- his link to the world -- his computer.

Steve is now writing a book, one letter at a time. So, what about that moment when a doctor suggested that removing his pacemaker battery would be an "easy way to go?" He addresses that moment in the book.

"Had I been a good husband?" he wrote. "Had I told her how much I loved her? I guess so. She was yelling, 'You stay away from him.'"

But for a long time, Steve did wish that he would die.

"He would say to me, 'I want to die. I want to die. You've gotta help me, you have to help me. I can't do it myself,'" Cindy said.

The turning point came, Steve said, when he realized that Cindy and his family still loved him.

Though Glenda Hickey's voice has not yet returned, she has learned to communicate again. She looks up for "yes" and down for "no."

To speak she follows a simple but tedious method, using an alphabetical chart that groups the letters into rows. As the letters are read, Glenda responds "yes" or "no" to spell out each word. By now, the whole family has memorized the chart.

Glenda Hickey may be locked in, but she is not left out. Kevin says they have openly talked about their marriage, and decided to make it work.

"We said, OK, well, we have to make a decision here if … as husband and wife, what's going to happen now. And then I decided that we were going to make a go of it," Kevin said.

And they have. The family functions with the help of caretakers who watch over Glenda and the children while Kevin works.

In the future, there may be more help for patients like Glenda from a familiar little pill: Viagra.

Dr. Michael Chopp, a neuroscientist at Henry Ford Hospital in Detroit, has found that Viagra helps the brain make new nerve cells. His experiments are encouraging, showing that rats can recover from strokes after taking the drug.

"I think we are poised to revolutionize the treatment of neurologic disease," he said.

But the Hickeys aren't banking on any medical revolution. They're just continuing with their lives. Their marriage remains a "new normal," and that includes sex.

But what they didn't expect was that Glenda would get pregnant again.

At first, their doctor urged them to terminate the pregnancy because it was so risky for Glenda. But in the delivery room the doctor apologized, telling Kevin, "You know, I think God had a little hand in this one."

Hope Hickey was born 20 months ago. Doctors believe that this is the first time that a woman living with locked-in syndrome has given birth.

It is clearly not the life they'd planned. But Glenda and Kevin still find joy in the life they're living. And they say that, in the end, is all anyone can ask for.

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