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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.

All images provided by Bombas

We can all be part of the giving movement

True

We all know that small acts of kindness can turn into something big, but does that apply to something as small as a pair of socks?

Yes, it turns out. More than you might think.

A fresh pair of socks is a simple comfort easily taken for granted for most, but for individuals experiencing homelessness—they are a rare commodity. Currently, more than 500,000 people in the U.S. are experiencing homelessness on any given night. Being unstably housed—whether that’s couch surfing, living on the streets, or somewhere in between—often means rarely taking your shoes off, walking for most if not all of the day, and having little access to laundry facilities. And since shelters are not able to provide pre-worn socks due to hygienic reasons, that very basic need is still not met, even if some help is provided. That’s why socks are the #1 most requested clothing item in shelters.

homelessness, bombasSocks are a simple comfort not everyone has access to

When the founders of Bombas, Dave Heath and Randy Goldberg, discovered this problem, they decided to be part of the solution. Using a One Purchased = One Donated business model, Bombas helps provide not only durable, high-quality socks, but also t-shirts and underwear (the top three most requested clothing items in shelters) to those in need nationwide. These meticulously designed donation products include added features intended to offer comfort, quality, and dignity to those experiencing homelessness.

Over the years, Bombas' mission has grown into an enormous movement, with more than 75 million items donated to date and a focus on providing support and visibility to the organizations and people that empower these donations. These are the incredible individuals who are doing the hard work to support those experiencing —or at risk of—homelessness in their communities every day.

Folks like Shirley Raines, creator of Beauty 2 The Streetz. Every Saturday, Raines and her team help those experiencing homelessness on Skid Row in Los Angeles “feel human” with free makeovers, haircuts, food, gift bags and (thanks to Bombas) fresh socks. 500 pairs, every week.

beauty 2 the streetz, skid row laRaines is out there helping people feel their beautiful best

Or Director of Step Forward David Pinson in Cincinnati, Ohio, who offers Bombas donations to those trying to recover from addiction. Launched in 2009, the Step Forward program encourages participation in community walking/running events in order to build confidence and discipline—two major keys to successful rehabilitation. For each marathon, runners are outfitted with special shirts, shoes—and yes, socks—to help make their goals more achievable.

step forward, helping homelessness, homeless non profitsRunning helps instill a sense of confidence and discipline—two key components of successful recovery

Help even reaches the Front Street Clinic of Juneau, Alaska, where Casey Ploof, APRN, and David Norris, RN give out free healthcare to those experiencing homelessness. Because it rains nearly 200 days a year there, it can be very common for people to get trench foot—a very serious condition that, when left untreated, can require amputation. Casey and Dave can help treat trench foot, but without fresh, clean socks, the condition returns. Luckily, their supply is abundant thanks to Bombas. As Casey shared, “people will walk across town and then walk from the valley just to come here to get more socks.”

step forward clinic, step forward alaska, homelessness alaskaWelcome to wild, beautiful and wet Alaska!

The Bombas Impact Report provides details on Bombas’s mission and is full of similar inspiring stories that show how the biggest acts of kindness can come from even the smallest packages. Since its inception in 2013, the company has built a network of over 3,500 Giving Partners in all 50 states, including shelters, nonprofits and community organizations dedicated to supporting our neighbors who are experiencing- or at risk- of homelessness.

Their success has proven that, yes, a simple pair of socks can be a helping hand, an important conversation starter and a link to humanity.

You can also be a part of the solution. Learn more and find the complete Bombas Impact Report by clicking here.

Joy

10 things that made us smile this week

Grab your boost of serotonin here.

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Upworthy's weekly roundup of joy.

Holy moly—it's fall, y'all!

As pumpkin spice swoops in and we start unpacking our cozy sweaters and cute boots, we can practically taste the seasonal change in the air. Fall is filled with so many small joys—the fresh, crisp smell of apples, the beauty of the leaves as they shift from greens to yellows, oranges and reds, the way the world gets wrapped in a warm glow even as the air grows cooler.

Part of what makes the beauty of fall unique is that it's fleeting. Mother Nature puts on a vibrant show as she sheds what no longer serves her, inviting us to revel in her purposeful self-destruction. It's a gorgeous example of not only embracing change, but celebrating it.

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via LinkedIn

This article originally appeared on 07.10.21


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Woman left at the altar by her fiance decided to 'turn the day around’ and have a wedding anyway

'I didn’t want to remember the day as complete sadness.'

via Pixabay

The show must go on… and more power to her.

There are few things that feel more awful than being stranded at the altar by your spouse-to-be. That’s why people are cheering on Kayley Stead, 27, from the U.K. for turning a day of extreme disappointment into a party for her friends, family and most importantly, herself.

According to a report in The Metro, on Thursday, September 15, Stead woke up in an Airbnb with her bridemaids, having no idea that her fiance, Kallum Norton, 24, had run off early that morning. The word got to Stead’s bridesmaids at around 7 a.m. the day of the wedding.

“[A groomsman] called one of the maids of honor to explain that the groom had ‘gone.’ We were told he had left the caravan they were staying at in Oxwich Bay (the venue) at 12:30 a.m. to visit his family, who were staying in another caravan nearby and hadn’t returned. When they woke in the morning, he was not there and his car had gone,” Jordie Cullen wrote on a GoFundMe page.

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