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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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iStock // Ekaterina Minaeva
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Man Buys Two Metric Tons of LEGO Bricks; Sorts Them Via Machine Learning
May 21, 2017
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iStock // Ekaterina Minaeva

Jacques Mattheij made a small, but awesome, mistake. He went on eBay one evening and bid on a bunch of bulk LEGO brick auctions, then went to sleep. Upon waking, he discovered that he was the high bidder on many, and was now the proud owner of two tons of LEGO bricks. (This is about 4400 pounds.) He wrote, "[L]esson 1: if you win almost all bids you are bidding too high."

Mattheij had noticed that bulk, unsorted bricks sell for something like €10/kilogram, whereas sets are roughly €40/kg and rare parts go for up to €100/kg. Much of the value of the bricks is in their sorting. If he could reduce the entropy of these bins of unsorted bricks, he could make a tidy profit. While many people do this work by hand, the problem is enormous—just the kind of challenge for a computer. Mattheij writes:

There are 38000+ shapes and there are 100+ possible shades of color (you can roughly tell how old someone is by asking them what lego colors they remember from their youth).

In the following months, Mattheij built a proof-of-concept sorting system using, of course, LEGO. He broke the problem down into a series of sub-problems (including "feeding LEGO reliably from a hopper is surprisingly hard," one of those facts of nature that will stymie even the best system design). After tinkering with the prototype at length, he expanded the system to a surprisingly complex system of conveyer belts (powered by a home treadmill), various pieces of cabinetry, and "copious quantities of crazy glue."

Here's a video showing the current system running at low speed:

The key part of the system was running the bricks past a camera paired with a computer running a neural net-based image classifier. That allows the computer (when sufficiently trained on brick images) to recognize bricks and thus categorize them by color, shape, or other parameters. Remember that as bricks pass by, they can be in any orientation, can be dirty, can even be stuck to other pieces. So having a flexible software system is key to recognizing—in a fraction of a second—what a given brick is, in order to sort it out. When a match is found, a jet of compressed air pops the piece off the conveyer belt and into a waiting bin.

After much experimentation, Mattheij rewrote the software (several times in fact) to accomplish a variety of basic tasks. At its core, the system takes images from a webcam and feeds them to a neural network to do the classification. Of course, the neural net needs to be "trained" by showing it lots of images, and telling it what those images represent. Mattheij's breakthrough was allowing the machine to effectively train itself, with guidance: Running pieces through allows the system to take its own photos, make a guess, and build on that guess. As long as Mattheij corrects the incorrect guesses, he ends up with a decent (and self-reinforcing) corpus of training data. As the machine continues running, it can rack up more training, allowing it to recognize a broad variety of pieces on the fly.

Here's another video, focusing on how the pieces move on conveyer belts (running at slow speed so puny humans can follow). You can also see the air jets in action:

In an email interview, Mattheij told Mental Floss that the system currently sorts LEGO bricks into more than 50 categories. It can also be run in a color-sorting mode to bin the parts across 12 color groups. (Thus at present you'd likely do a two-pass sort on the bricks: once for shape, then a separate pass for color.) He continues to refine the system, with a focus on making its recognition abilities faster. At some point down the line, he plans to make the software portion open source. You're on your own as far as building conveyer belts, bins, and so forth.

Check out Mattheij's writeup in two parts for more information. It starts with an overview of the story, followed up with a deep dive on the software. He's also tweeting about the project (among other things). And if you look around a bit, you'll find bulk LEGO brick auctions online—it's definitely a thing!

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Nick Briggs/Comic Relief
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What Happened to Jamie and Aurelia From Love Actually?
May 26, 2017
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Nick Briggs/Comic Relief

Fans of the romantic-comedy Love Actually recently got a bonus reunion in the form of Red Nose Day Actually, a short charity special that gave audiences a peek at where their favorite characters ended up almost 15 years later.

One of the most improbable pairings from the original film was between Jamie (Colin Firth) and Aurelia (Lúcia Moniz), who fell in love despite almost no shared vocabulary. Jamie is English, and Aurelia is Portuguese, and they know just enough of each other’s native tongues for Jamie to propose and Aurelia to accept.

A decade and a half on, they have both improved their knowledge of each other’s languages—if not perfectly, in Jamie’s case. But apparently, their love is much stronger than his grasp on Portuguese grammar, because they’ve got three bilingual kids and another on the way. (And still enjoy having important romantic moments in the car.)

In 2015, Love Actually script editor Emma Freud revealed via Twitter what happened between Karen and Harry (Emma Thompson and Alan Rickman, who passed away last year). Most of the other couples get happy endings in the short—even if Hugh Grant's character hasn't gotten any better at dancing.

[h/t TV Guide]

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