amyotrophic lateral sclerosis, als communication, wyss center

A man with ALS communicating via brain waves.

I can’t imagine worse torture than being stuck in a locked-in state caused by amyotrophic lateral sclerosis (ALS). ALS is a disease of the nervous system where nerve cells slowly break down, causing muscles to weaken throughout the body.

Patients who survive through the weakening process eventually reach a locked-in state where even though their brain still functions, they are completely paralyzed with their eyes mostly closed.

In this state, the person is unable to communicate. People with ALS typically live two to five years after being diagnosed and usually die from paralysis of the respiratory diaphragm.

However, life may get a little better for people with ALS after a new development that has allowed a man to form sentences using only his brain waves. Researchers at the Wyss Center for Bio and Neuroengineering in Geneva, Switzerland, developed a brain electrode that they implanted into a 36-year-old man in a locked-in state that has allowed him to communicate.


“Ours is the first study to achieve communication by someone who has no remaining voluntary movement and hence for whom the BCI is now the sole means of communication,” said Dr. Jonas Zimmermann, a senior neuroscientist at the Wyss Center.

“This study answers a long-standing question about whether people with complete locked-in syndrome – who have lost all voluntary muscle control, including movement of the eyes or mouth – also lose the ability of their brain to generate commands for communication,” Zimmermann added.

After three months of unsuccessful attempts, the patient was able to spell “yes” or “no” and to form sentences through a speller program.

One of his first requests was to be put in an elevated position when there are guests in the room. He also was able to ask for one thing he probably needed more than anything at that point, a beer. He had to be dying for a beer. He also asked for the band Tool to be played “loud.”

The electrodes allowed him to interact with his 4-year-old child, who he was able to call “my cool son.” He also asked for specific foods to be put into his feeding tube. “For food, I want to have curry with potato then Bolognese and potato soup,” he said.

This was the first time that brain electrodes were even implanted into a locked-in patient and researchers had no idea if they would work.

The scientists behind the groundbreaking technology are now seeking funding to provide similar implants for other people with ALS. “This is an important step for people living with ALS who are being cared for outside the hospital environment,” said George Kouvas, chief technology officer at the Wyss Center.

It’s stories like this that remind us that we should never take for granted the ability to communicate our basic needs. Let’s hope that the man with ALS will be able to drink as many beers as he likes and to be able to rock out to Tool as loud as possible for the rest of his days.

Joy

Meet Eva, the hero dog who risked her life saving her owner from a mountain lion

Wilson had been walking down a path with Eva when a mountain lion suddenly appeared.

Photo by Didssph on Unsplash

A sweet face and fierce loyalty: Belgian Malinois defends owner.

The Belgian Malinois is a special breed of dog. It's highly intelligent, extremely athletic and needs a ton of interaction. While these attributes make the Belgian Malinois the perfect dog for police and military work, they can be a bit of a handful as a typical pet.

As Belgian Malinois owner Erin Wilson jokingly told NPR, they’re basically "a German shepherd on steroids or crack or cocaine.”

It was her Malinois Eva’s natural drive, however, that ended up saving Wilson’s life.

According to a news release from the California Department of Fish and Wildlife, Wilson had been walking down a path with Eva slightly ahead of her when a mountain lion suddenly appeared and swiped Wilson across the left shoulder. She quickly yelled Eva’s name and the dog’s instincts kicked in immediately. Eva rushed in to defend her owner.

It wasn’t long, though, before the mountain lion won the upper hand, much to Wilson’s horror.

She told TODAY, “They fought for a couple seconds, and then I heard her start crying. That’s when the cat latched on to her skull.”

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Joy

50-years ago they trade a grilled cheese for a painting. Now it's worth a small fortune.

Irene and Tony Demas regularly traded food at their restaurant in exchange for crafts. It paid off big time.

Photo by Gio Bartlett on Unsplash

Painting traded for grilled cheese worth thousands.

The grilled cheese at Irene and Tony Demas’ restaurant was truly something special. The combination of freshly baked artisan bread and 5-year-old cheddar was enough to make anyone’s mouth water, but no one was nearly as devoted to the item as the restaurant’s regular, John Kinnear.

Kinnear loved the London, Ontario restaurant's grilled cheese so much that he ordered it every single day, though he wouldn’t always pay for it in cash. The Demases were well known for bartering their food in exchange for odds and ends from local craftspeople and merchants.

“Everyone supported everyone back then,” Irene told the Guardian, saying that the couple would often trade free soup and a sandwich for fresh flowers. Two different kinds of nourishment, you might say.

And so, in the 1970s the Demases made a deal with Kinnear that he could pay them for his grilled cheese sandwiches with artwork. Being a painter himself and part of an art community, Kinnear would never run out of that currency.

Little did Kinnear—or anyone—know, eventually he would give the Demases a painting worth an entire lifetime's supply of grilled cheeses. And then some.

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Sandy Hook school shooting survivors are growing up and telling us what they've experienced.

This story originally appeared on 12.15.21


Imagine being 6 years old, sitting in your classroom in an idyllic small town, when you start hearing gunshots. Your teacher tries to sound calm, but you hear the fear in her voice as she tells you to go hide in your cubby. She says, "be quiet as a mouse," but the sobs of your classmates ring in your ears. In four minutes, you hear more than 150 gunshots.

You're in the first grade. You wholeheartedly believe in Santa Claus and magic. You're excited about losing your front teeth. Your parents still prescreen PG-rated films so they can prepare you for things that might be scary in them.

And yet here you are, living through a horror few can fathom.

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