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Man who lost all motor control due to ALS asks for 'a beer' using only his mind

An incredible innovation

via Wyss Center/YouTube

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. In 2022, 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.


This article originally appeared three years ago.

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Person who uses a wheelchair shares tips for being less weird around them

"It's wild to me how often people will just roll me out of their way. Please don't do this."

Image by Canva, Screenshot via @AdamHubrig/Twitter

A wheelchair user offered some helpful tips for how to interact with them in daily life.

One of the best things about social media—besides the hilarious cat videos—is how it gives us all an opportunity to learn from one another. The ability to share an experience or a piece of wisdom or advice and have it be carried far and wide can be incredibly useful, especially when it comes from someone whose voice may not be heard as often as it should.

A perfect example is a 2022 thread by Ada Hubrig (@AdamHubrig) on Twitter explaining how and how not to interact with a person in a wheelchair. Hubrig says using a wheelchair has been "life-changing in the best way" for them, but the way they are treated when they are using a wheelchair can be annoying, frustrating, hurtful or just downright weird.

Some people don't have regular interactions with people who use wheelchairs and may have questions about what's appropriate and what's not. Some people might make assumptions about people using wheelchairs or be completely oblivious to how their prejudices are impacting their behavior. Hubrig's thread not only clarified some common issues wheelchair users deal with, but also opened up the conversation for people to ask some of the less obvious questions.

Hubrig opened their thread by explaining that they actually love their wheelchair, as they can't stand or walk for more than 10 minutes without it. However, they loathe how people treat them when they're using it.

Then they shared some tips on how to do better:

"First, remember that wheelchair users are people," they wrote. "We are more similar to you than different, we're just sitting down while you're standing up. You're likely around other people who are sitting as you stand all the time. Don't make it weird."

"Second, remembering that we're people, respect our autonomy," they continued. "If we're speaking and you have a question for me, don't ask my partner who is standing. As an example, medical professionals will often ask my partner my symptoms when I am RIGHT THERE. Please notice us."

The third piece of advice was to never touch a person's wheelchair or other mobility or medical advice unless you have been given permission. Hubrig said that people will often just roll them out of the way.

Yeah, don't do that. You wouldn't pick up a standing person and move them out of the way (hopefully). Same concept.

Hubrig went on to explain that no one is entitled to anyone else's medical history or trauma. "I get that you may mean well, but asking 'what happened' can be more difficult for some people than you realize," they wrote. "It's a lot of emotional labor to answer."

On a related note, don't ask about people's genitals. Ever. Seriously.

A tip for parents: "Please don't let your kids crawl on me or my wheelchair. My wheelchair isn't a toy."

"I like kids mostly, I do," Hubrig wrote. "But even if we weren't in a pandemic, I don't want any stranger up in my personal space like that. Once a kid ripped my ostomy bag off me. No plz."

Also, don't make judgments about a person's need for the wheelchair. "Some wheelchair users, like myself, don't use the wheelchair full time," Hubrig wrote. "I can walk/stand about ten minutes at a time, and use a cane for short distances. If you see a wc user standing/using a cane/whatever, don't assume we're faking. We don't use a wc for fun."

Not being believed can be a major barrier to people with disabilities utilizing the tools they need to live as fully and functionally as possible. "I have talked to many people whose life would be better with a mobility device but they don't use one. Because of how we treat people who use mobility devices."

That is a tragedy.

Finally, Hubrig summed up the basics:

"1.) Wheelchair users/disabled people ARE people. Act as such.

2.) Mind your business."

Seems simple enough, but as we all know, humans have a remarkable ability to not follow simple instructions.

One of the common questions well-meaning people had was whether or not they should offer to help a person in a wheelchair if it appears they are struggling. On the one hand, you don't want to assume someone needs help just because they're in a wheelchair, but on the other, you don't want to leave them struggling if they do need help.

The consensus was that asking if someone needs help is almost always appropriate. Just don't assume they need help and jump in without asking (barring any obvious emergencies, of course).

Another question some had was whether it's appropriate to lean over or kneel down to talk to someone in a wheelchair. On the one hand, it might feel more respectful to put yourself on the same eye level as the person in the chair. On the other hand, you don't want to make them feel like you're infantilizing them. (This question was asked by a person who is hard of hearing, which adds another layer to the question as that's an accommodation that needs to be considered as well. But it was also asked by someone who simply wanted to know which wheelchair users preferred.)

Responses from wheelchair users varied a bit, but most agreed that standing was fine for brief exchanges, but pulling up a chair to talk to them at a similar height was appreciated for long conversations. It can be straining on the neck to look up at someone for long periods.

So much boils down to basic empathy and the Golden Rule. If you were using a wheelchair, what would feel rude or disrespectful or annoying? How would you want people to talk to or interact with you? The truth is any one of us may find ourselves with a disability that necessitates a mobility or medical device at some point in our lives, so the more we normalize accommodations and, you know, basic courtesy and compassion, the better off we'll all be.


This article originally appeared on 2.24.22

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Deaf girl gets to talk to Santa for the first time thanks to elf who knows sign language

Holly the Elf made this holiday extra special.

via Gustavo Fring/Pexels

Santa hands a gift to a little girl.

It has to be incredibly frustrating to be a deaf child who can’t tell Santa exactly what they want for Christmas. That’s why a community’s work to ensure that Emily Andrews, 4, from East Yorkshire, England, had a British Sign Language (BSL) translator at a Santa event was so special.

A video shared by Southwest News Service shows Andrews speaking to Santa with the help of Melanie Boyeson, also known as Holly the Elf, who knows BSL. Through Boyeson, Emily could tell Santa that she wanted a doll, a stroller, earrings and a ring on Christmas morning.

"It was just a magical experience. Emily being able to communicate freely with the elf and tell Santa what she wanted was just amazing,” Tanya Ansrews, the girl’s mother, told SWNS.

Deaf girl meets Santa properly for first time - thanks to signing elf 🥰🎅🎁 | LOVE THIS

The moment was even more meaningful because on 4 occasions the family had been promised that a sign language worker would be present to help the young girl communicate with Santa, but it never worked out.

Emily’s brother goes to Airmyn Park Primary School, and when the head teacher, Natalie Dodd, heard about her struggles, she reached out to the community to find a translator for their school’s Santa event.

"Through the power of Facebook, we found Holly the Elf, whose real name is Melanie Boyeson, and she volunteered to visit our grotto and interpret for Emily," Dodds said. "Even though Emily isn’t a pupil here, she is part of our extended school family. As a small school, we are privileged to be able to embrace the wider school and village community, and we wanted to provide this experience for Emily."

Tanya told the BBC that there should be more holiday events with BSL interpreters for deaf children. “Everyone should be treated equally,” she said.

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Man teaches disability awareness by using sign language to communicate with deaf pitbull

Christopher Hannah and Cole the Deaf Dog have inspired children and veterans for over 6 years.

via DeafCole/TikTok

Chris Hannah and Cole entertain a group of kids.

Six years ago, Cole was a deaf pitbull deemed “broken” and passed up by countless families at the South Jersey Regional Animal Shelter. But in April of 2017, he was adopted by Chris Hannah, a public school music teacher and they’ve been changing lives ever since.

Chris, with the help of his deaf nephew, taught the dog sign language, and they began doing presentations in schools, teaching kids that it’s okay to be different and helping them to be courageous and kind. They also help them reflect on their feelings of “brokenness” to learn self-acceptance and compassion. In their performances, Chris and Cole demonstrate that disabilities are a superpower by showing that a dog can learn sign language.

Cole is also a hospice therapy volunteer and the official mascot of the New Jersey Veterans Memorial Home.

“This is what we do: inspiring children that anything is possible if you just believe in YOU. We are about disability awareness, about changing the way the world thinks, and about making a difference by being different. Let’s all share our similarities and celebrate what makes us unique,” Chris captioned a recent video of him and Cole performing at a school presentation.

@deafcole

#deafdog #deafdogsoftiktok #rescuedog #shelterdog #fypシ

Here’s Cole working with his friend, Alice.

@deafcole

Deaf Dog Rockstars🤟 #dogsoftiktok #pitbullsoftiktok #deafdog #fypシ

Cole may be unable to hear, but he’s pretty good at moving to the music.

@deafcole

This is How We Do It #therapydog #dogsoftiktok #pitbullsoftiktok #deafdog #musicteacher #foryou

Earlier this year, Cole was awarded the Dog of the Year Award from the ASPCA for being “an ambassador for people and pets with disabilities through the Team Cole Project.”

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