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.
Completely locked-in man uses brain-computer interface to communicate. Today, Wyss Center COO, Olivier Coquoz, discussed the team\u2019s new Nature Communications paper on @RTScqfd. Listen back to the interview here: https://pages.rts.ch/la-1ere/programmes/cqfd/24-03-2022#12927261\u00a0\u2026 #neuroscience #BCIhttps://wysscenter.ch/updates/completely-locked-in-man-uses-brain-computer-interface-to-communicate\u00a0\u2026
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.
Helga, Nathalie and Gina all have MS, and their experiences show how differently the disease can manifest.
It’s been 155 years since neurologist Jean-Martin Charcot gave the first lecture on a mysterious progressive illness he called “multiple sclerosis.” Since then, we’ve learned a lot. We know MS causes the immune system to attack healthy tissue, including damaging the brain and spinal cord. Resulting symptoms can be debilitating and include fatigue, blurred vision, memory problems and weakness. Huge advancements in our understanding of MS and its underlying causes, as well as treatment advances, have been made in the past few decades, but MS remains a complex and unpredictable reality for the 2.8 million+ people diagnosed around the world.
Ironically, the only real constant for people living with MS is change. There’s no set pattern or standard progression of the disease, so each person’s experience is unique. Some people with MS have mild symptoms that worsen slowly but sometimes improve, while others can have severe symptoms that drastically alter their daily lives.
All people with MS share some things in common, however, such as the need to stay informed on the ever-evolving research, find various lines of support and try to remain hopeful as they continue living with the disease.
To better understand what navigating life with MS really looks like, three women shared their MS stories with us. Their journeys demonstrate how MS can look different for different people and interestingly, how the language used to talk about the disease can greatly impact how people understand their realities.
Gina loves riding her horse, Benita.Courtesy of Sanofi
Gina—Hamburg, Germany (diagnosed with relapsing multiple sclerosis in 2017)
When her youngest son was 4 months old, Gina started having problems with her eye. She’d soon learn she was experiencing optic neuritis—her first symptom of MS.
“Immediately after the diagnosis, I looked up facts on MS because I didn’t know anything about it,” Gina says. “And as soon as I knew what could really happen with this disease, I actually got scared.”
As her family’s primary income provider, she worried about how MS would impact her ability to work as a writer and editor. Her family was afraid she was going to end up in a wheelchair. However, for now, Gina’s MS is managed well enough that she still works full-time and is able to be active.
“When I tell somebody that I have MS, they often don't believe me the first time because I don't fulfill any stereotypes,” she says.
Overwhelmed by negative perspectives on living with MS, Gina sought support in the online MS community, which she found to be much more positive.
“I think it’s important to use as many positive words as you can when talking about MS.” It’s important to be realistic while also conveying hope, she says. “MS is an insidious disease that can cause many bad symptoms…that can be frightening, and you can't gloss over it, either.”
To give back to the online community that helped her so much, Gina started a blog to share her story and help others trying to learn about their diagnosis.
Though she deals with fatigue and cognitive dysfunction sometimes, Gina stays active swimming, biking, riding horses and playing with her sons, who are now 11 and 6.
Cognitive dysfunction is common in MS, with over half of people affected. It can impact memory, attention, planning, and word-finding. As with many aspects of MS, some people experience mild changes, while others face more challenges.
Gina says that while there’s still a lot of education about MS needed, she feels positive about the future of MS because there’s so much research being done.
Nathalie is an award-winning rower with multiple international titles.Courtesy of Sanofi
Nathalie — Pennes Mirabeau, France (diagnosed with relapsing-remitting multiple sclerosis in 2002)
Nathalie was a teenager and a competitive athlete when she noticed her first symptoms of MS, but it would take four years of “limbo” before she was diagnosed.
“Ultimately, the diagnosis was more of a relief, than a shock,” she says. “Because when you have signs and you don’t know why, it’s worse than knowing, in the end, what you have.”
However, learning more about the disease—and the realities of disease progression—scared her.
“That glimpse of the future was direct and traumatic,” she says. Her neurologist explained that the disease evolves differently for everyone, and her situation might end up being serious or very mild. So, she decided to stop comparing herself to others with MS.
She said to herself, “We’ll see what happens, and you’ll manage it bit by bit.”
By 2005, Nathalie’s MS had progressed to the point of needing a wheelchair. However, that has not dampened her competitive spirit.
Nathalie began her international rowing career in 2009 and has won multiple world titles, including two Paralympic medals—silver in London and bronze in Tokyo. Now, at 42, she still trains 11 times a week. Fatigue can be a problem, and sometimes hard workouts leave her with muscle stiffness and shaking, but she credits her ongoing sports career for helping her feel in tune with her body’s signals.
“Over the years, I’ve learned to listen to my body, letting my body guide when I need to stop and take breaks,” she says.
Nathalie explains that she used to only look backwards because of the initial shock of her diagnosis. In time, she stopped thinking about what she couldn’t do anymore and focused on her future. She now lives in the following mindset: “Even when doors close, don’t miss out on those that open.” Instead of focusing on what she can’t do, she focuses on the opportunities she still has. Right now, this includes her training for the 2024 Paralympic Games in Paris, where she will compete for another rowing medal.
“I only go forward,” she says. “Well, I try, anyway…It’s easy to say, it’s not always easy to do. But that’s what I try to do.”
Helga's Great Dane has become a helpful and beloved companion.Courtesy of Sanofi
Helga—Johannesburg, South Africa (diagnosed with relapsing multiple sclerosis in 2010)
When Helga first started having balance issues and numbness in her feet, she chalked it up to her training as a runner. But when the numbness moved to her face, she knew something was wrong. She never guessed it was MS.
“When I was diagnosed, I felt completely overwhelmed and clueless,” Helga says. “I felt that I had nowhere near enough information. I did not know anything about the disease…I had no idea that it was going to be a process of continually monitoring and adjusting your lifestyle.”
In the beginning, Helga’s symptoms developed slowly, and she didn’t appear ill to others. She was even able to run for a few years after her diagnosis, but she couldn’t do marathons anymore, and she began to fall frequently due to balance issues and right-foot dragging. Then her cognition issues became more problematic, especially in her job as a trainer in a printing company.
“My executive function, decision-making and short-term memory were affected to the point that I was eventually medically unfit for work,” she says. She stopped working in 2017.
However, she didn’t stop living life. Even though she could no longer run, she continued to swim competitively. She got a Great Dane puppy and trained him as a service dog to help her walk. She also serves as vice chair of the patient support organization Multiple Sclerosis South Africa, and she advises others who have been diagnosed to join a patient advocacy group as soon as possible to get reliable information and meet others with MS.
Helga says she is “hopeful” about the future of MS. “I must say that I am so grateful that we have all the new medications available, because my life would not be the same if it wasn't for that,” she adds.
Part of how she manages her MS is by looking at the positives.
“If I could tell the world one thing about MS, it would be that MS is an incurable disease of the nervous system, but it's also the greatest teacher of valuing your health, family, friends, and managing change in your life,” she says. “My life is diversified in a way that I never, ever thought it would, and MS has been honestly the greatest teacher.”
Each MS journey is unique – with each person impacted experiencing different struggles, successes, and feelings as they manage this unpredictable disease. But the common thread is clear – there is a critical need for information, support, and hope. We are proud to participate in World MS Day and share these incredible stories of living life while living with MS. To learn more about MS, go to https://www.sanofi.com/why-words-really-matter-when-it-comes-to-multiple-sclerosis.
This article was sponsored by Sanofi. Participants were compensated when applicable.
Ring doorbell video captures what it's like to be the default parent.
Kids, man. I'm not sure of the scientific way audacity is distributed, but kids have a lot of it and somehow make it cute. That audacity overload is especially interesting when you're the default parent—you know, the parent kids go to for literally everything as if there's not another fully capable adult in the house. Chances are if your children haven't sought you out while you were taking a shower so you could open up a pack of fruit snacks, then you're not the default parental unit.
One parent captured exactly what it's like to be the default parent and shared it to TikTok, where the video has over 4 million views. Toniann Marchese went on a quick grocery run and *gasp* did not inform her children. Don't you fret, they're modern kids who know how to use modern means to get much-needed answers when mom is nowhere to be found. They went outside and rang the doorbell.
Back when we were children, this would've done nothing but make the dogs bark, but for Marchese's kids, who are 3 and 6 years old, it's as good as a phone call.
You may be questioning why this mom left her two young children home alone. She didn't. Their father was home, likely wondering why the children were playing so quietly. But. He. Was. Right. There. And the kids still bypassed him to talk to their mom through the Ring doorbell camera. It was pressing business, after all.
Little girl shocks her mom by pulling out a pocket full of worms
Kids will absolutely test all parts of your personality. Not out of malicious intent, but simply because kids are innocent and don't don't understand unspoken social rules, especially when they're very little. One of those seemingly common sense unspoken social rules is that you don't go to the nail salon with worms in your pockets.
Scratch that, you don't walk around with worms in your pocket, period. That is unless you're on a fishing boat and you're in charge of bait and you run out of room in the canister filled with worms. I mean, there are a lot of things that would have to come into play to make having worms in your pocket socially acceptable. But kids don't know that, and one little girl, Kylee Grace, gave her mom a shock after they left the nail salon one day.
In the video posted to TikTok, which has now gone mega-viral with over 11.5 million views, Kylee and her mom are walking down the sidewalk after getting their nails done. Jenae, the little girl's mom, asks her daughter if she has a worm in her pocket. Then things quickly get hilariously weird.
Kylee stops and looks like she doesn't want to answer her mom's question before quietly saying, "Yeah." You guys, she has a worm in her pocket.
"Why do you have a worm in your pocket?" Jenae rightfully asks.
"I don't know," Kylee says.
After her mom tells her to get the worm out of her pocket, the girl holds up the earthworm and it starts moving, which again, shocks Jenae. Because how is it still alive after spending who knows how long in the pocket of a little kid? The poor little confused worm is finally released back into the wild with fresh air, but Mom's intuition kicks in, so she asks if Kylee has any more worms.
The little girl pulls out two handfuls of live earthworms that are likely thankful that Kylee was caught so they could get back to living their best life in someone's yard. People in the comments thought the entire situation was hilarious and some even suggested that she get a worm farm.
"I was expecting one from each pocket she grabbed the whole family," one commenter wrote.
"Pleaseeeeeeeeeeeee get her a worm farm she deserves it man," someone said.
"Definitely a future biologist!!! Mom get her a small aquarium fill it with soil, let her put her worms in it and WATCH her shine" another wrote.
"How she got 37 worms in her pocket but just pulled out 1. I cried," someone commented.
Some of the commenters had a very important question, where did she get all of those worms? Turns out, she stuffed them in her pockets at daycare. Look, Kylee and her worms are going places. The little girl never really admitted why she had the worms outside of her liking them, but there had to be a plan. Maybe Jenae will take some of the commenters up on their advice and buy her a worm farm to encourage her love for worms. All I know is, laundry day is going to be a weird, slimy game of Russian roulette.
If you’re having trouble meeting a romantic partner, research shows you could improve your chances by getting a dog. A 2020 YouGov study found that 50% of Americans would be more willing to date someone if they had a dog, while only 9% would be less willing to do so.
Women are more interested in meeting someone with a dog (54%) compared to 46% of men.
People are more attracted to dog lovers for a pretty simple reason. They assume that those who have dogs are better at having long-term relationships. “People might infer that a dog-walking man knows how to form lasting attachments, has the resources to care for someone else (dog ownership is expensive!), and is reliable enough to do the daily work involved with dog ownership,” Theresa E. DiDonato Ph.D. writes in Psychology Today.
When he was 19, the Reddit user's parents gave him an adorable Golden Retriever puppy for Christmas. Because of the spirit of the season, he named her “Holly.” The Redditor couldn’t take the dog home immediately, so it stayed with his parents for a few weeks while he got situated.
Six months later, when he took Holly in for a check-up, he learned that while she was living with his parents, his father registered her under another name with the American Kennel Club and the local veterinarian. While he waited for his dog to be called to the vet, a young woman caught his attention.
“So I'm sitting in the waiting room and a cute girl around my age comes in with a beautiful GSD [German Shepherd] pup and sits by me,” the man recounted. “Our pups start playing together so we inevitably talk. We're hitting it off, talking about the joys and downs of puppy ownership. Then the receptionist steps up and calls: 'Mizz Princess Hollywood?'"
Blindsided by the name, the guy felt humiliated. The name of his potential paramour’s dog didn’t make things any easier.
"Now I'm already embarrassed, but it didn't help that while I was still standing up there, they call out ‘Bowser’ (or something else fairly masculine), and the cute girl stands up with her pup,” the Redditor wrote. “I just walked into the exam room red-faced and never saw her again.”
Instead of feeling embarrassed, a Reddit user named Sniperstar said the dog owner should have used the situation to his advantage. “[You] Should have got up said, ‘It's a long story, but I'd love to tell you about it over coffee after this,’" Sniperstar suggested.
Sniperstar isn’t wrong in their suggestion. Studies show that, according to heterosexual women, a sense of humor is one of the most attractive qualities a man can have. But who knows if even a well-timed joke can overcome the cringe of having a dog named Mizz Princess Hollywood?
While marriages are by far much more egalitarian than they have been in decades past, many women will tell you that when it comes to emotional and domestic labor, they still take on the lion’s share of responsibility.
Brown has amassed over 400,000 followers on her TikTok account, where a major part of her schtick includes what she calls “flipping the script” on social issues. And as of late, it’s her focus on parenting expectations that has people—particularly fed up moms—nodding in agreement.
In a series titled “flipping the script on weaponized incompetence,” Brown pokes fun at fathers who remain willfully ignorant by asking their partners for help on even the most basic tasks, thus escaping the responsibility of pulling their weight.
"Honey, I can't find the pull-ups. Can you come look?" she whines in one video. Seconds later, she asks "Where do you keep the kids’ clothes? What time does school start?" delivered in perfect deadpan.
The real kicker is when Brown is handed a fake baby, and with disgust, she tells her imaginary husband, "You want me to babysit while you take a shower? She's just going to cry for you. Why don't you just take her with you?"
Sounds absolutely ridiculous coming from a woman, right? Yeah, others caught on to that, too.
"Hearing a woman say those things sounds so ludicrous. Why do some men get away with this?! The first sign of this while dating and I'm out," one person commented.
And since weaponized incompetence doesn't take holidays off, Brown had a Mother’s Day Edition, (or Father’s Day, in this imaginary scenario). As Brown enters the room, she manages to wish her husband “Happy Father’s Day” and asks for help—several times—in the same breath.
“That kitchen is a disaster. Don’t worry about it today. It’s Father’s Day! You can just clean it up tomorrow,” she quips.
Brown also expected her husband to still have the agenda for the day mapped out, basically planning how he would be celebrated. Clearly, this was a common occurrence, given the sheer number of comments on Brown’s video. Many chose to give their own tongue-in-cheek nods to that particular experience.
“He’s so lucky you’re giving him the choice of what to do on his special day. I’m sure he has so many plans!” one person wrote to which Brown replied, “He just needs to tell me what to do, and I'll do it!” Ah, the crux of the issue in a single sentence.
Weaponized incompetence can even be summoned at your local grocery store, apparently. In another video, Brown is seen calling her husband to ask him important questions like what aisle the juice is on or if a fuji apple is red or green, all with an exasperated voice that clearly conveys she doesn't think she should need to do the task.
Again, as bonkers as this skit seemed, women could relate. The very top comment read: “I put ‘fruit—whatever’s on sale’ and my husband bought every type of fruit because ‘they were selling all of it.’”
Weaponized incompetence is certainly not a tactic solely employed by husbands to get out of household chores. It’s a term used to describe any time a person tries to skirt shared responsibilities by pretending they aren’t up to the task. As marriages rely on teamwork and trust in order to be successful, it’s easy to see why Brown and her viewers are attempting to shine a light on a serious issue, even if it is done in a lighthearted way.
Editor's Note: Upworthy earns a percentage of revenue from the sale of items mentioned in this article.
In athletic wear, a good pair of leggings can make or break your workout experience. Comfort, flexibility, and style are key factors contributing to the perfect pair, and finding ones that marry these elements seamlessly can be challenging. Whether you're a yoga enthusiast, a gym-goer, or someone who values comfort in their everyday attire, these seamless leggings offer something for everyone. Dive in to discover the perfect pair that will elevate your athletic wardrobe and enhance your workout routine.
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Fitness coach and child with cerebral palsy inspire each other.
Everybody needs someone who can relate to them; it's one of the things that connects the human experience. For a 5-year-old New Jersey girl named Colbie Durborow, that connection came just in time. Colbie has been noticing people staring at her lately as she gets around using leg braces, a walker and sometimes a wheelchair, and she told her mom that she doesn't like it when people stare.
Colbie was born 17 weeks early and has cerebral palsy (CP), a group of disorders that affect balance, mobility and posture, according to the Centers for Disease Control and Prevention. Her mom connected with former CrossFit trainer Steph Roach on Instagram, and the two became friends.
Roach also has CP and uses a wheelchair, but she defied the expectations of others by becoming a fitness coach, CrossFit instructor and author.
"When I saw Colbie and I saw the way that Amanda was guiding Colbie through life, it was just like we were meant to be friends," Roach explained to CBS Mornings.
The two women and Colbie got to know each other online, and before long, Roach was acting as a mentor for the little girl. They were all finally able to meet in January, and the author got to teach Colbie how to navigate some uncomfortable situations.
"Colbie realizes that people are starting to look at her and see her maybe a little bit differently, so we've had some big conversations about how that might make her feel," Roach said.
She went on to encourage the little girl that it's OK to tell people that she doesn't like it when they stare and to offer to answer questions people may have. The exchange was very sweet. Roach later admitted that she thought that Colbie could do anything, and said through tears that if she could go back to her 5-year-old self, she would tell her to be proud of herself.
It's clear that these two have developed a special bond through their connection with CP. Thanks to having Roach in her life, Colbie is learning that she can do things that exceed expectations. You can watch their adorable bond below: