16-39 Segment 2: Locked-In Syndrome

shadowy figure trapped behind glass

 

Some people who have a stroke in the brain stem suffer from a condition where they are fully conscious and aware, yet appear to be in a coma because they cannot move a muscle, except for sometimes the eyes. They may remain in this “locked-in” state for years. A stroke expert and a woman who recovered from this condition discuss it.

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Guests:

  • Allison O’Reilly, Locked-In Syndrome survivor and author, Out Of the Darkness
  • Dr. Ralph Sacco, Chairman of Neurology, University of Miami Miller School of Medicine and former President, American Heart Association

Links for more info:

16-39 Locked-in Syndrome

Nancy Benson: Every year, about 800,000 Americans suffer a stroke. About three quarters of those episodes come out of the blue, suffered by someone who’s never had a stroke before. That’s what happened in the fall of 2010 to then-49-year old Allison O’Reilly of suburban Washington, DC. She suffered a stroke in her brain stem. And when she woke up, she was a prisoner in her own body, unable to move at all. She had what’s called “locked-in syndrome.”

Allison O’Reilly: It’s like being buried alive. You can only blink your eyes. You can’t move, you can’t speak, you can’t eat, but you’re aware of everything going on around you. You can hear, you can feel a touch but you’re like stuck. It’s a nightmare.

Dr. Ralph Sacco: Locked-in Syndrome is a rare but very disabling condition usually associated with a stroke in the brain stem. And what it means when somebody is called “locked-in” is that often they can only communicate with a slight eye movement. Not moving their arms, not moving their legs, often not even being able to move their hands, their mouth’s not able to speak and so they’re in this sort of what’s called a locked-in state.

Benson: That’s Dr. Ralph Sacco, Chairman of Neurology at the University of Miami Miller School of Medicine and former president of the American Heart Association. People with locked in syndrome may need ventilators and other life support… Even though they’re fully conscious. But doctors and family may not realize it.

Sacco: Often locked-in states can be confused with a vegetative state or coma because the person is not responding verbally, they’re not responding by moving their arms or legs to commands. So sometimes you don’t think they can understand what somebody is saying to them. Often they can only communicate by a movement in one eye to say a little slight movement to the left or right. The public and loved-ones may misinterpret that state as not reacting to the external environment when they are conscious and they are actually able to comprehend their surroundings, they just can’t communicate back.

Benson: Locked-in syndrome accounts for perhaps one percent of all strokes. But one study has found that the average locked in patient goes two-and-a-half months before doctors realize that they’re “in there.” Some patients have gone four to six years before anyone realized they were conscious all along. And a few patients have been horrified to hear doctors talk about pulling the plug on life support… and there’s nothing they can do to protest. Often, the only giveaway is some small eye movement. That’s what happened with Allison O’Reilly. Fortunately for her it happened quickly, as she describes in her book, Out of the Darkness.

O’Reilly: Nurses and doctors look at the patient and see if there’s any eye movement. I had a wonderful nurse in the ICU who said, “You know, I think she’s in there.”

Sacco: Often it’s the family who spend a lot of time at the bedside may note some communication that’s going on. You know often though doctors and neurologists, specifically, if they’ve made this diagnosis will then instruct the family that the person can understand what they’re saying, can react to them and you can develop even a way of communicating: look to the right for “yes,” or look to the right twice, or blink an eye if you can for “yes” or “no” so there’s a communications system that can be set up.

O’Reilly: Everything was formed into questions so I would blink once for yes, twice for no and then I progressed to a communication board and I would blink when they got to the letter I wanted.        

Benson: Unfortunately, most locked in patients never get better. Often eye movements are all they ever achieve. That makes O’Reilly very fortunate. Some people say she’s a walking miracle. It began with the ability to twitch her foot. Eventually, she learned to walk and talk again.

O’Reilly: One day my girlfriend was beginning to say “bye” and I yelled, “I love you,” and that was my first words. And then all the words came back pretty fast after that. It was like the floodgates opened.

Benson: Today, O’Reilly volunteers at numerous stroke awareness events. She has her life… But like many stroke survivors, it’ll never be the same.

O’Reilly: I get down of course and I am taking some medicine for that to help with my mood because you remember what your life was like before the stroke.

Benson: But what about those patients who remain locked in–who never regain the ability to move anything but their eyes? Most healthy people, and doctors as well, often assume it’s a life that’s not worth living. But one study shows patients themselves often disagree. Experts say locked in patients should not be denied the right to die… But they should also not be denied the right to live with dignity.

Sacco: Often with locked-in state there may also be a dependence on respirators, obviously a dependence on feeding tubes and other ways of maintaining circulation so there are other life supports that are occurring so withdrawal of care is one option. But quality of life is a very personal issue and there are many of us if we were in such a state like that would probably prefer to have withdrawal of care and not to live in a locked-in syndrome. While there may be some people who would still want to communicate in any way possible with the hope of some miracles. So these are very personal decisions that I think need to be made between a patient and their family.

Benson: For Allison O’Reilly, the difference between locked in patients and other stroke survivors may be one of only degree. Many people who’ve had a stroke live the rest of their lives with a portion of their bodies locked away or disabled. It’s taught her to live every day to the fullest.

O’Reilly: It brought to light how fragile life is. If it could happen to me it could happen to anyone. So I think people are a little more cognizant of how they feel and in their life don’t take anything for granted.

Benson: You can find out more about Allison O’Reilly on her website… Outofthedarknessbook.org. You can find out more about stroke at strokeassociation.org. And you can find out about all of our guests on our website… Radiohealthjournal.net. Our production director is Sean Waldron. I’m Nancy Benson.

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