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Eight Stories of Locked-In Syndrome

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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

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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

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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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Medicine
Why Haven't We Cured Cancer Yet?
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Walkathons, fundraisers, and ribbon-shaped bumper stickers raise research dollars and boost spirits, but cancer—the dreaded disease that affects more than 14 million people and their families at any given time—still remains bereft of a cure.

Why? For starters, cancer isn't just one disease—it's more than 100 of them, with different causes. This makes it impossible to treat each one using a one-size-fits-all method. Secondly, scientists use lab-grown cell lines cultivated from human tumors to develop cancer therapies. Living masses are far more complex, so potential treatments that show promise in lab experiments often don't work on cancer patients. As for the tumors themselves, they're prone to tiny genetic mutations, so just one growth might contain multiple types of cancer cells, and even unique sub-clones of tumors. These distinct entities might not respond the same way, or at all, to the same drug.

These are just a few of the challenges that cancer researchers face—but the good news is that they're working to beat all of them, as this TED-Ed video explains below.

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crime
8 Bizarre Medical Murderers
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A facial reconstruction of William Burke

We are often at our most vulnerable with physicians and nurses, which might be why stories of crimes committed by medical professionals seem so shocking. Because if you can’t trust your doctor, who can you trust? The answer: probably no one. Below are eight of the most appalling acts of murder, fraud, and grave-robbing associated with the medical community. Patient, beware.

1. BURKE AND HARE: THE BODY-SNATCHERS

In the early 19th century, Edinburgh, Scotland was one of Europe's leading centers of medical study. But there was a problem: The city's medical schools were constantly short on bodies to dissect. The law dictated that only the bodies of executed convicts were allowed to be carved up for science. So fresh bodies, however harvested, could command a princely sum, and there were plenty of local entrepreneurs ready to take advantage. Known as “resurrectionists,” they thwarted graveyard watchmen to plunder the city’s cemeteries, selling the treasure to anatomists.

William Burke and William Hare were a special breed of resurrectionists. In 1827, they began their foray into body-snatching courtesy of one of Hare’s recently deceased boarders. The pair sold the body to a Dr. Robert Knox, one of the city’s leading anatomists. With 7 pounds 10 shillings (about $820 today) in their pockets, they realized they’d stumbled upon a promising enterprise. But like the city's doctors and students, they were frustrated by the lack of bodies. So they decided to create their own supply.

The two soon began murdering other lodgers, travelers, and the generally down-and-out—usually by plying them with whiskey and then suffocating them. Burke and Hare kept Dr. Knox and his students supplied for almost a year, until an acquaintance alerted authorities after stumbling upon one of their victims hidden in a straw mattress. Upon arrest, Hare agreed to testify against Burke, who was convicted of just a single murder, although it is commonly believed the total number killed was at least 16. Burke, whose name became synonymous with his mode of killing, was hanged on January 28, 1829 before a crowd of more than 20,000 spectators. Fittingly enough, his body was donated to science and publicly dissected by one of Dr. Knox's peers.

2. GERALD BARNBAUM: THE FAKE

The vast majority of physicians are highly dedicated individuals. And no one was more dedicated than Gerald Barnbaum, a.k.a. Gerald Barnes. The only problem was, he wasn’t actually a physician. That didn’t stop him from practicing medicine in southern California for more than 20 years, and neither did five convictions and stints in prison for practicing without a license, mail fraud, and manslaughter, among other charges.

Trained as a pharmacist, Barnbaum lost his license in a Medicaid fraud scandal in the mid-1970s. Fascinated by the medical profession since childhood, he decided to follow his real passion, albeit without the pesky education. Barnbaum used a sob story to fool both the California medical authorities and a medical school into sending him the credentials of one Dr. Gerald Barnes, a respected, and real, California MD (he claimed a bitter spouse had destroyed the originals). He then went on to spend more than two decades charming his way from one clinic to another.

He was first caught in 1979, when he misdiagnosed a clear-cut case of diabetes in a young man, who later slipped into a coma and died. He pled down from murder to manslaughter in 1981, and served 18 months of a 3-year sentence before being paroled.

Thus began a bizarre cycle of practice, discovery, conviction, and parole that would repeat four more times. The fifth attempt came in 2000 after Barnbaum escaped custody during a prison transfer. Four weeks later he was caught, of course, practicing at a North Hollywood clinic. He’s currently serving a 10-year sentence for that crime, and is due out in 2019, at the age of 86.

3. HAROLD SHIPMAN: THE LITTLE-OLD-LADY KILLER

Photo Of Doctor Harold Shipman
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One of the world’s most prolific serial killers was considered by most who knew him to be a caring family physician. Harold Shipman spent decades practicing medicine in the small city of Hyde, in Manchester, England. Most loved him, but a few noticed that many of his elderly charges passed away at or around their visits with the good doctor. Once, the coroner’s office was even alerted, but could not find evidence of any foul play.

That’s because Shipman’s weapon of choice was often diamorphine—a medical form of heroin—which he injected into his patients. He’d then alter his records to support whatever cause of death he gave the relatives of the deceased. He also discouraged autopsies and encouraged cremation.

It was his greed that finally undid him. When a healthy 81-year-old widow named Kathleen Grundy died in 1998, her daughter grew suspicious at the appearance of a will that left Shipman much of her mother’s estate. It was an obvious forgery, and her report resulted in a raid of Shipman’s home, which unearthed enough evidence to prompt a deeper investigation. Shipman was arrested on suspicion of 15 murders and one case of forgery. He maintained his innocence, but in 2000 was found guilty on all charges and sentenced to 15 life sentences. Four years later he was found dead in his cell, having hung himself. Subsequent investigations that compared the mortality rate of Shipman’s patients to those of other practices estimated that at least 215 deaths could be attributed to him.

4. NIELS HÖGEL: THE “BAD LUCK CHARM”

Many medical professionals will tell you there’s nothing to match the feeling of saving a life. But for at least one German nurse, the thrill was so addictive there never seemed to be enough desperate cases to quench it.

In 2015 nurse Niels Högel was convicted of two counts of murder and two counts of attempted murder. He’d been caught administering a large dose of an unneeded cardiovascular drug to a patient. His goal: Send the patient into cardiac arrest so he could resuscitate them. Högel claimed that he’d found his work as a nurse boring, but reveled in the glory and recognition that a successful resuscitation would bring. His colleagues saw it differently; at one hospital he’d been labeled a “bad luck charm” for his presence at so many deaths.

If only it had been bad luck. During an initial trial, which covered his employment at a clinic in Delmenhorst, Germany, between 2002 and 2005, Högel admitted to dosing some 90 patients, 30 of whom died. The shocking admission prompted an investigation into 500 former patient cases, and the exhumation of 134 bodies. To date, 84 additional victims have been identified, with others still being tested.

5. JANE TOPPAN: THE NURSE FROM HELL

For the sick and suffering, emotional care can be just as palliative as physical. In 19th century Boston, patients of “Jolly” Jane Toppan received both—and then some. The beloved nurse was known for her boisterous good humor with patients, but those she grew especially close to had a habit of expiring, most likely due to the large and lethal doses of morphine and atropine that Toppan administered.

Born Honora Kelly in 1857, Toppan worked as an indentured servant for the Toppan family until she was 28, at which point she began training as a nurse in the city (her name was changed to Toppan during her time with the family, although she was never formally adopted). It was there she began experimenting on her favorite patients, administering varying doses of morphine and atropine to observe their effect on the nervous system. Later, she would admit to receiving a sexual thrill at being close to her patients as they wavered between life and death; she’d even climb into bed and embrace them as they struggled.

After dismissal from both Cambridge Hospital and Massachusetts General, Toppan spent 10 years as a private nurse in the Boston area. During this time she expanded her pool of victims to landlords, friends, and, on occasion, professional competition [PDF]. Again, morphine and atropine were her weapons of choice, although she occasionally dabbled in rat poison.

Her coup de grâce, however, occurred between in July and August 1901, when she systematically eliminated a family of four on Cape Cod. She started with the matriarch, Mattie Davis, who had visited her to collect rent owed on a summer cottage that Toppan rented from the family. Davis lingered for a week before succumbing, and Toppan traveled with the body to the Cape, under the guise of attending to the grieving family. Davis’s oldest daughter was next to go, followed by Mr. Davis, and finally, the youngest daughter, Minnie Gibbs, all in about five weeks.

Suspicious, Gibbs’s husband contacted a toxicologist, asking him to exhume the bodies and test them. Toppan was arrested and tried for the Davis murders, but found not guilty by reason of insanity. She was committed to a mental institution for the rest of her life. Turns out, Toppan had owned up to at least 31 murders in front of her defense lawyer, and may have been responsible for as many as 100. She died in her 80s in a lunatic asylum.

6. LAINZ ANGELS OF DEATH: THE HEARTBREAKERS

Looking after the ill and ailing is a tough job, an unending litany of needs large and small. That goes double for the ill and elderly. In the 1980s, four Austrian nurse's aides decided to make things a little easier on themselves by eliminating the needy.

Nicknamed the Angels of Death, Maria Gruber, Irene Leidolf, Stephanija Meyer, and Waltraud Wagner shocked Austria when they confessed to having brutally murdered some 49 elderly patients between 1983 and 1989. Wagner, largely believed to be the ringleader, initially confessed to all but 10 of those killings, though she later recanted and placed her total number closer to 10 (and all of those mercy killings).

But as their trials—Wagner and Leidolf for murder, Mayer for manslaughter, and Gruber for attempted murder—progressed, it became clear that while mercy may have motivated the first few killings, later victims were chosen not for their suffering, but because of offenses as small as soiling the bed or snoring. The murders themselves were carried out either through an overdose of drugs like insulin or through the “water cure,” in which the patient’s nose was pinched closed, the tongue held down and water poured into the lungs. And according to at least one member of the group, the total death count could have been more like 200, though that was never proven.

All four women were convicted and imprisoned, Wagner and Leidolf for life, but by 2008, all had been released from prison on good behavior.

7. MICHAEL SWANGO: THE KILLER ON TWO CONTINENTS

While Harold Shipman and Jane Toppan ingratiated themselves with those around them, the brilliant Dr. Michael Swango failed to charm. In fact, some found him downright creepy. He’d often express admiration for serial killers and kept a scrapbook of violent accidents. Yet even as suspicious patient deaths followed him over a decade and a half, he was always able to find work—and more victims.

From the very beginning of his medical training, bodies just seemed to drop around Michael Swango (in med school, he earned the nickname Double-O-Swango, because he had a “license to kill”). The dead followed him through his internship in an Ohio hospital, where nurses reported his uncanny appearance just before or after code blues.

In 1984, Swango was arrested for poisoning six of his fellow EMTs by lacing doughnuts, tea, and soda with arsenic. Damned by a mountain of evidence gathered at his apartment, he was convicted and served two years of a five-year sentence.

After prison, Swango bounced around the country, lying about his past on residency applications. After being fired from a number of programs, he tried to escape the mounting evidence against him by practicing in Zimbabwe, where, again, he couldn’t seem to help himself, and was soon under investigation for several patient deaths.

Finally, in 1997, the FBI—who’d been investigating since the death of three patients at a Veterans Affairs hospital on Long Island years earlier—caught up with him during a layover at Chicago-O’Hare airport. Initially convicted of falsifying his credentials on his VA application, he served several years in prison before being charged with three murders. He pled guilty to avoid a death sentence, and is currently serving time at a supermax prison in Colorado.

While it’s unknown just how many people Swango murdered during his career, conservative estimates put it at around 35, and some place it as high as 60.

8. DONALD HARVEY: THE DIS-ORDERLY

Like German nurse-cum-serial-killer Niels Högel, orderly Donald Harvey was given nicknames by his hospital co-workers—"Kiss of Death" among them. Patients, especially the old and infirm, had a habit of dying on Harvey’s watch. At least 34 of them expired thanks to Harvey’s direct intervention, which he claimed to be an act of mercy.

From 1970 to 1987, Harvey worked in hospitals in Ohio and Kentucky, where he’d often be in close contact with the seriously ill. Almost as soon as he began his first job, he started to kill off patients through methods that included smothering them with plastic sheets and pillows, feeding them cyanide and arsenic hidden in food and drinks, or hooking them up to depleted oxygen tanks. And while he said each was an attempt to end suffering, he would also tell the media that he enjoyed exerting control over life and death.

Later, he escalated to non-patients, again via poisoning, and in one case, attempted to kill his lover’s friend by exposing her to hepatitis serum he’d stolen from the hospital.

Harvey was finally caught in 1987 after a doctor performing an autopsy on his last victim caught the smell of cyanide in the victim’s stomach. An investigation followed, and Harvey was arrested. He’d eventually plead guilty to 37 murders (34 patients at two hospitals, and three non-patients). His lawyer later reported that Harvey had actually admitted to 70 murders, but no further charges were ever brought. In 2017, while the 64-year-old was serving multiple life sentences in a prison in Toledo, Ohio, he was beaten to death by a fellow inmate.

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