Eight Stories of Locked-In Syndrome

Imagine losing control over everything. You can't move on your own. You can't scratch an itch. And worse still, you can't tell anyone around you that you have an itch. You can feel pain, hunger, loneliness, and fear, but you can't react to those sensations. You are totally aware of your surroundings, but you can't communicate your feelings or desires, or even your basic needs. The term for this horror is locked-in syndrome. Someone with locked-in syndrome suffers from paralysis of all voluntary muscles except for those that move the eyes. This can be caused by neurological disease such as ALS, strokes, injuries to the brain stem, or drug overdose. The term locked-in syndrome has only been in use since the 1960s. Before that, people who suffered such traumatic injuries generally died from them, or else they were considered to be brain damaged. Here are the stories of eight people who have lived this nightmare.

Julia Tavalaro

One of the dangers of locked in syndrome is the possibility of misdiagnosis. No one knows how many people lived for years and died unable to tell anyone around them that they were conscious and aware. Julia Tavalaro was a 27-year-old housewife and mother in 1967 when she suffered multiple strokes that left her completely paralyzed. Doctors thought she was brain dead. Tavalaro was sent to a custodial institution where she lived for six years without anyone knowing she was aware of her surroundings. She was fed through a tube and cared for physically, but had no real interaction with her caretakers. In 1973, a speech therapist noticed Tavalaro's eyes moving in reaction to her words. Afterward, Tavalaro was given physical therapy and an opportunity to communicate, first by a letter board, then later by operating a computer by tapping a switch with her cheek. She also learned to control her wheelchair by head movements. Tavalaro wrote a book about her experiences, Look Up For Yes, and became a renowned poet. She died in 2003, at the age of 68.

Nick Chisholm

nick.jpgNew Zealander Nick Chisholm was 23 when he had a rugby accident in 2000. A resulting series of strokes left him paralyzed and unable to communicate. For the first three months, he couldn't even open his eyes. During this time, he was fully conscious and heard medical personnel discussing his imminent death and asking his mother if she wanted to remove life support. After several months, his mother and girlfriend convinced doctors that he was aware and thinking. Chisholm could move his eyes, and communicated by staring at letters on a letter board. His story is told in his own words, with medical explanations added.

Words can't describe the situation I have been left in—but this is as close as I can get it: an extremely horrific experience that I wouldn't wish on my worst enemy.

When you're like this (despite having 24 hour care) it's an incredibly lonely existence at times. It's amazing how much time I have to think about things now since the accident. There's heaps of thoughts that I don't bother even expressing.

Chisholm writes about contemplating suicide, although he didn't have the ability to carry it out. He has since regained some movement, and can pronounce some words. Chisholm is working toward a full recovery.

Bob Veilette


Bob Veilette was a Connecticut journalist and an accomplished jazz pianist in 2006 when a stroke left him with locked-in syndrome. After six months in a hospital, his family elected to care for him at home instead of putting him in a nursing home. That decision meant that Connecticut's Medicaid program would not cover the costs of his care, even though a nursing home would have been much more expensive. Veilette joined a movement to reform the system, although the changes they are working for will not benefit him personally for years. Private fundraisers support the family, but Veilette has had no speech or occupational therapy, and only limited physical therapy due to expenses. Veilette communicates with a letter board held by an assistant. He had no luck with a computer that tracks eye movements, because fluctuations in the size of his pupils upset the tracking.

Catherine O'Leary

200catherine-oleary.jpg31-year-old Catherine O'Leary suffered from hiccups for three years before the cause was discovered to be a brain tumor. During surgery to remove the tumor, a series of strokes left her completely paralyzed. She communicates by blinking; one blink for yes, two blinks for no. Eight months after the surgery, she can move her facial muscles somewhat, but still cannot speak due to a tracheotomy that allows her to breathe. Her brother is working to raise enough money to send her to America for medical treatment.

Jean-Dominique Bauby


French journalist Jean-Dominique Bauby was 43 when he suffered a massive stroke in 1995. He was left with only the ability to blink his left eye. Bauby died less than two years later, but managed to write his memoir by waiting for an assistant to recite the French alphabet. He would blink when the right letter was pronounced. Using this method, he had to construct and edit each sentence and chapter in his head. The resulting book was The Diving Bell and The Butterfly (Le scaphandre et le papillon). Bauby died of pneumonia only ten days after the book was published. It was made into a film released in 2007.

Gary Griffin

Air Force veteran Gary Griffin is immobile due to ALS (Lou Gehrig's disease). He uses a device called the NeuroSwitch to control a computer and communicate with his family. Sensors are attached to the skin over a patient's muscles and signals are sent to an interface that translates the slightest muscle contractions into usable code. The company's website says even muscles that are considered non-functional may be used.

Johnnie Ray

johnnyray.gifAdvances in assistive technology gives new hope to those with disabilities, including locked-in syndrome. Johnny Ray suffered a brain stem stroke in 1997 that left him unable to move. In 1998, he volunteered for an experimental procedure developed by by Philip Kennedy, Roy Bakay, and the team at the Neural Interfacing Research Institute. Sensors were implanted in Ray's brain that allowed him to move a cursor on a computer with his thoughts.

"We simply make a hole in the skull right above the ear, near the back end of the motor cortex, secure our electrodes and other hardware to the bone so they don't migrate, and wait for a signal," Bakay says. The implant is an intriguing hybrid of electronics and biology - it physically melds with brain tissue.

After implantation, the research team calibrated the interface by asking ray to think about certain movements, and the software was programmed to respond to such signals. Ray used the cursor to spell words and even generate musical tones on a computer.

Erik Ramsey

erik-ramsey.jpgDr. Kennedy is taking that technology a step further for his latest patient. Erik Ramsey was seriously injured in a car wreck in 1999 when he was 16 years old. A blood clot lodged in his brain stem and caused a stroke. Erik lost all voluntary muscle function, except for the ability to move his eyes up and down. He learned to communicate with his family using a letter board. In 2001, he inexplicably lost the ability to spell when he was hospitalized for pneumonia. Since then, he communicates only by rolling his eyes up for yes, and down for no. In 2004, Dr. Kennedy and his team implanted sensors in Ramsey's brain that can convert thoughts into speech. So far, he can think of the movements that produce vowel sounds and the computer recreates those sounds. The team hopes to program the interface to achieve consonant sounds within a year.

Links to resources on locked-in syndrome.

This article was inspired by a post at Metafilter.

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How Accurate are Hollywood Medical Dramas? A Doctor Breaks It Down
Matthew Simmons/Getty Images
Matthew Simmons/Getty Images

Medical dramas like Grey's Anatomy get a lot of things wrong when it comes to the procedures shown on the screen, but unless you're a doctor, you'd probably never notice.

For its latest installment, WIRED's Technique Critique video series—which previously blessed us with a dialect coach's critique of actors' onscreen accents—tackled the accuracy of medical scenes in movies and TV, bringing in Annie Onishi, a general surgery resident at Columbia University, to comment on emergency room and operating scenes from Pulp Fiction, House, Scrubs, and more.

While Onishi breaks down just how inaccurate these shows and movies can be, she makes it clear that Hollywood doesn't always get it wrong. Some shows, including Showtime's historical drama The Knick, garner praise from Onishi for being true-to-life with their medical jargon and operations. And when doctors discuss what music to play during surgery on Scrubs? That's "a tale as old as time in the O.R.," according to Onishi.

Other tropes are very obviously ridiculous, like slapping a patient during CPR and telling them to fight, which we see in a scene from The Abyss. "Rule number one of CPR is: never stop effective chest compressions in order to slap or yell words of encouragement at the patient," Onishi says. "Yelling at a patient or cheering them on has never brought them back to life." And obviously, taking selfies in the operating room in the middle of a grisly operation like the doctors on Grey's Anatomy do would get you fired in real life.

There are plenty of cliché words and phrases we hear over and over on doctor shows, and some are more accurate than others. Asking about a patient's vitals is authentic, according to Onishi, who says it's something doctors are always concerned with. However, yelling "We're losing him!" is simply for added TV drama. "I have never once heard that in my real life," Onishi says.

[h/t WIRED]

Farrin Abbott, SLAC/Flickr // CC BY-NC-SA 2.0
An Ancient Book Blasted with High-Powered X-Rays Reveals Text Erased Centuries Ago
Farrin Abbott, SLAC/Flickr // CC BY-NC-SA 2.0
Farrin Abbott, SLAC/Flickr // CC BY-NC-SA 2.0

A book of 10th-century psalms recovered from St. Catherine’s Monastery on Egypt's Sinai Peninsula is an impressive artifact in itself. But the scientists studying this text at the U.S. Department of Energy's SLAC National Accelerator Laboratory at Stanford University were less interested in the surface text than in what was hidden beneath it. As Gizmodo reports, the researchers were able to identify the remains of an ancient Greek medical text on the parchment using high-powered x-rays.

Unlike the Large Hadron Collider in Switzerland, the Stanford Synchrotron Radiation Lightsource (SSRL) used by the scientists is a much simpler and more common type of particle accelerator. In the SSRL, electrons accelerate to just below the speed of light while tracing a many-sided polygon. Using magnets to manipulate the electrons' path, the researchers can produce x-ray beams powerful enough to reveal the hidden histories of ancient documents.

Scanning an ancient text.
Mike Toth, R.B. Toth Associates, Flickr // CC BY-NC-SA 2.0

In the case of the 10th-century psalms, the team discovered that the same pages had held an entirely different text written five centuries earlier. The writing was a transcription of the words of the prominent Greek physician Galen, who lived from 130 CE to around 210 CE. His words were recorded on the pages in the ancient Syriac language by an unknown writer a few hundred years after Galen's death.

Several centuries after those words were transcribed, the ink was scraped off by someone else to make room for the psalms. The original text is no longer visible to the naked eye, but by blasting the parchment with x-rays, the scientists can see where the older writing had once marked the page. You can see it below—it's the writing in green.

X-ray scan of ancient text.
University of Manchester, SLAC National Accelerator Laboratory, Flickr // CC BY-NC-SA 2.0

Now that the researchers know the hidden text is there, their next step will be uncovering as many words as possible. They plan to do this by scanning the book in its entirety, a process that will take 10 hours for each of the 26 pages. Once they've been scanned and studied, the digital files will be shared online.

Particle accelerators are just one tool scientists use to decipher messages that were erased centuries ago. Recently, conservationists at the Library of Congress used multispectral imaging, a method that bounces different wavelengths of light off a page, to reveal the pigments of an old Alexander Hamilton letter someone had scrubbed out.

[h/t Gizmodo]


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