CLOSE

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

433veilette.jpg

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

mfBauby.jpg

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.

arrow
Lists
7 Health Tips From Ancient Physicians
Portrait of Galen
Portrait of Galen

If you feel bombarded by conflicting advice on how to stay (or get) healthy, you’re not alone. Intermittent fasting, juice cleanses, and low-carb diets are a few of today’s health trends, but fashionable health advice is nothing new. Consider these health tips from ancient physicians, which range from surprisingly relevant to downright absurd. (Just don't consider any of it actual medical advice, of course—that's what modern physicians are for.)

1. PAY ATTENTION TO YOUR DREAMS.

Galen, a Greek physician who treated Roman emperor Marcus Aurelius among others, wrote hundreds of texts about medicine starting around 150 CE. Galen believed that what you dream about can indicate your overall level of wellness and reveal specific ailments you might be suffering from. Before you call him a quack, keep in mind that he acknowledged that some dreams are simply a random assortment of the day’s events, rather than a direct message about the state of one’s health. As he wrote in On Diagnosis in Dreams:

“The vision-in-sleep [dream], in my opinion, indicates a disposition of the body. Someone dreaming a conflagration is troubled by yellow bile, but if he dreams of smoke, or mist, or deep darkness, by black bile. Rainstorm indicates that cold moisture abounds; snow, ice, and hail, cold phlegm. ... But since in sleep the soul does not produce impressions based on dispositions of the body only, but also from the things habitually done by us day by day, and some from what we have thought—and indeed some things are revealed by it in fashion of prophesy ... the diagnosis of the body from the visions-in-sleep that arise from the body becomes difficult.”

2. DON’T CHANGE YOUR DIET TOO QUICKLY.

Line engraving of Hippocrates
Hippocrates

Greek physician Hippocrates, now known as the father of medicine, wrote several works chock full of health advice. In On Ancient Medicine (written around 400 BCE, although the dates and authorship of the text are somewhat disputed), he explains the wisdom of treading slowly when it comes to making adjustments to your diet. As he explains it, some people are used to eating only one meal per day, while others feel better eating two meals per day. If someone who is accustomed to eating once per day suddenly adds another meal to his schedule, disease can occur.

“But there are certain persons who cannot readily change their diet with impunity; and if they make any alteration in it for one day, or even for a part of a day, are greatly injured thereby. Such persons, provided they take dinner when it is not their wont, immediately become heavy and inactive, both in body and mind, and are weighed down with yawning, slumbering, and thirst; and if they take supper in addition, they are seized with flatulence, tormina [abdominal pain], and diarrhea, and to many this has been the commencement of a serious disease, when they have merely taken twice in a day the same food which they have been in the custom of taking once.”

3. DRINKING TOO MUCH BOOZE CAN CAUSE PIMPLES.

As Galen explains in the Art of Physick, people with high body heat, red cheeks, and a cheerful disposition have a sanguine complexion. Such people, he argues, are more prone to certain conditions such as fevers and phlegm. Luckily, Galen tells sanguine patients how to achieve an optimal diet and exercise program for their body type. He warns that drinking too much beer, ale, and wine can cause a variety of maladies, including scabs, abscesses, fevers, and red pimples.

“Inordinate drinking of strong beer, ale, and wine, breeds hot rhewms scabs and itch, St. Anthony’s fire [a skin infection], quinsies [an infection behind the tonsils], pleuresies [pain when breathing], inflammations, fevers, and red pimples.”

4. BEANS AND FLOWERS CAN FIGHT DYSENTERY.

In On Regimen in Acute Diseases, Hippocrates lays out an easy plan for fighting dysentery, an intestinal infection that causes severe diarrhea. Luckily, no pharmacists are needed for this treatment, but you will have to track down some beans and plant shoots, if you don’t already have them on hand.

“For dysentery. A fourth part of a pound of cleaned beans, and twelve shoots of madder [a Eurasian plant] having been triturated [ground to a fine powder], are to be mixed together and boiled, and given as a linctus [a medicinal syrup] with some fatty substance."

5. IF YOU’RE PREGNANT, STAY AWAY FROM HAMMOCKS.

Detail of a woodcut depicting ancient herbalists and scholars, including Soranus
Detail of a woodcut depicting ancient herbalists and scholars, including Soranus

Scholars credit Sushruta as one of the earliest surgeons and the author of The Sushruta Samhita, a Sanskrit medical text written sometime around 600 BCE. The text warns pregnant women to avoid certain activities, such as fasting, falling, and taking medicine that causes vomiting. But some of the guidelines may sound strange to modern readers. According to Sushruta, pregnant women should not ride a horse, swing on a hammock, or sit on uneven ground, lest those activities cause the fetus to prematurely detach from the uterus.

“Sexual intercourse during pregnancy, riding on horseback, etc., or in any sort of conveyance, a long walk, a false step, a fall, pressure on the womb, running, a blow, sitting or lying down on an uneven ground, or in an uneven posture, fasting … use of emetics or purgatives, swinging in a swing or hammock, indigestion, and use of medicines which induce the labor pain or bring about abortions, and such like causes tend to expel the fetus from its fixture. These causes tend to sever the child from the uterine wall with its placental attachment owing to a kind of Abhighatam (uterine contraction) just as a blow tends to sever a fruit from its pedicel.”

6. IF YOU DON'T WANT TO GET PREGNANT, TRY SNEEZING.

Soranus, a Greek physician who worked in Rome around the early 2nd century CE, had plenty to say about menstruation, contraception, and abortion. As he wrote in Gynecology, sneezing can expel semen from a woman’s body and serve as an effective birth control method. Just remember to squat before you start sneezing.

“And during the sexual act, at the critical moment of coitus when the man is about to discharge the seed, the woman must hold her breath and draw herself away a little, so that the seed may not be hurled too deep into the cavity of the uterus. And getting up immediately and squatting down, she should induce sneezing and carefully wipe the vagina all round; she might even drink something cold.”

7. USE BURNING IRON TO CURE YOUR HEMORRHOIDS.

Hippocrates wrote at length about hemorrhoids, and his writings on the subject survive to this day. In On Hemorrhoids (400 BCE), he offers several methods to remove the offending piles. One of his tricks, which entails burning the hemorrhoids with pieces of hot iron, requires the patient to purge the day before. Sounds like fun.

“I recommend seven or eight small pieces of iron to be prepared, a fathom in size, in thickness like a thick specillum [speculum], and bent at the extremity, and a broad piece should be on the extremity, like a small obolus. Having on the preceding day first purged the man with medicine, on the day of the operation apply the cautery. Having laid him on his back, and placed a pillow below the breech, force out the anus as much as possible with the fingers, and make the irons red-hot, and burn the pile until it be dried up, and so as that no part may be left behind. And burn so as to leave none of the hemorrhoids unburnt, for you should burn them all up.”

nextArticle.image_alt|e
Jamie McCarthy/Getty Images for Bill & Melinda Gates Foundation
arrow
Medicine
Bill Gates is Spending $100 Million to Find a Cure for Alzheimer's
Jamie McCarthy/Getty Images for Bill & Melinda Gates Foundation
Jamie McCarthy/Getty Images for Bill & Melinda Gates Foundation

Not everyone who's blessed with a long life will remember it. Individuals who live into their mid-80s have a nearly 50 percent chance of developing Alzheimer's, and scientists still haven't discovered any groundbreaking treatments for the neurodegenerative disease [PDF]. To pave the way for a cure, Microsoft co-founder and philanthropist Bill Gates has announced that he's donating $100 million to dementia research, according to Newsweek.

On his blog, Gates explained that Alzheimer's disease places a financial burden on both families and healthcare systems alike. "This is something that governments all over the world need to be thinking about," he wrote, "including in low- and middle-income countries where life expectancies are catching up to the global average and the number of people with dementia is on the rise."

Gates's interest in Alzheimer's is both pragmatic and personal. "This is something I know a lot about, because men in my family have suffered from Alzheimer’s," he said. "I know how awful it is to watch people you love struggle as the disease robs them of their mental capacity, and there is nothing you can do about it. It feels a lot like you're experiencing a gradual death of the person that you knew."

Experts still haven't figured out quite what causes Alzheimer's, how it progresses, and why certain people are more prone to it than others. Gates believes that important breakthroughs will occur if scientists can understand the condition's etiology (or cause), create better drugs, develop techniques for early detection and diagnosis, and make it easier for patients to enroll in clinical trials, he said.

Gates plans to donate $50 million to the Dementia Discovery Fund, a venture capital fund that supports Alzheimer's research and treatment developments. The rest will go to research startups, Reuters reports.

[h/t Newsweek]

SECTIONS

arrow
LIVE SMARTER
More from mental floss studios