Three women, three MS journeys: How multiple sclerosis looks different for everyone
Gina, Nathalie and Helga share their reactions to being diagnosed with MS and how they stay informed and positive in the face of ever-changing symptoms.
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.
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A mom asked if it's appropriate to make a babysitter do housework and set the internet on fire
They're just sitting there while my kids sleep.
When it comes to babysitting, you can hit the jackpot with someone who not only enjoys hanging out with your kiddos but also cleans out of boredom. The only babysitter I've had that experience with is my mom, but I do hear they do exist. While walking into a spotless house after a much-needed night out would be amazing, it's not really part of a standard babysitting package.
Typically, whoever babysits for you is solely there to focus on the well-being of your children. They feed them snacks, play games with them, and follow their bedtime routine to the letter. Then they hang out on your couch reminding Netflix that they're still watching and wait for you to return. Sure, they clean up dishes from dinner and whatever toys were pulled out during their time with your kids, but they don't typically clean your house.
But in a private parenting group I belong to, a long debate was started when a mom asked a group of 260k of her closest friends if it would be appropriate for a parent to ask a babysitter to clean their home.
The anonymous mom explained that her college-aged daughter had recently started babysitting for a family, but on the second day, her duties suddenly changed. There was a list of chores waiting for the babysitter that included cleaning the family's dishes and cleaning up messes that were there before the sitter arrived.
This revelation set off a firestorm of comments with many agreeing that anything outside of cleaning up after the children while they're in your care is a separate job. But not everyone was on the same page and it was clear that this was a topic that was going to cause some intense debate. Since summer months are here, there's no wonder this topic is coming up and views are split.
Should babysitters be expected to clean, one mom asks.Photo by Sai De Silva on Unsplash
Scary Mommy recently published an article posing a similar question, only this was coming from a parent who wanted her babysitter to clean while her children slept. Elizabeth Narins explains that she and her husband are stretched thin and have an active toddler she jokingly calls a "toy tornado."
"Given the amount of housework that clearly needs to be done, paying someone to sit on our toy-covered couch during naps or after bedtime just seems... inefficient," Narins wrote before posing the question. "Is it completely out of line for me to ask her to declutter when my kids are in bed?"
Whether it's the expert interviewed for the Scary Mommy article or the parents in the private group, there does seem to be one common theme among the discourse: Any additional chores should be clarified in the original job description, and if it wasn't, then it should be directly brought up in a conversation with the babysitter.
Many parents in the comments believed that a housekeeper should be hired in addition to the babysitter, while others thought the babysitter should be offered more money for the additional work. But there were several people who thought it was just common courtesy for a babysitter to clean the house while the kids were asleep.
It may seem that you're paying a babysitter to do nothing while your children sleep, but you're paying them to be there in the event of an emergency. No matter which side of the debate you're on, it seems proper communication about expectations will save everyone a headache in the future.
Do you think cleaning should be expected from a babysitter?
Guy with 90s-style radio show on TikTok is actually changing lives for aspiring musicians
"The Bun 91.3" is giving unknown artists massive followings and even record label deals.
TikTok is a place where obscure music is celebrated, retro comedy is king and lives can be changed overnight. But it’s a rare feat for all three of those corners to intersect on the platform.
As is the way with many TikTok sensations, faux radio show “The Bun 91.3” started off as a fun hobby. The DJ, known only to listeners as “The Bun,” highlights songs by up-and-coming artists all while sporting aviator sunglasses and mastering that cheesy, old-school radio voice.
Much to his surprise, The Bun’s passion project has actually been bringing major attention to aspiring musicians who might otherwise go unnoticed, just like real radio shows did back in the day.
Take for instance the band Bird Photos. In his video playing their song “Dove,” The Bun said that the group had only 85 monthly listeners. After the clip was viewed over 650,000 times, Bird Photos’ reach skyrocketed to over 36,000 monthly listeners on Spotify.
@thebun91.3 Next song up: Dove - Bird Photos #rock#indierock#indie#indiepop#thebun913#radiohost#spotifyplaylist♬ Dove - Bird Photos
“Man really gave them a 7800% increase in listeners in four days. We LOVE small artist promoters,” one person commented.
Or singer/songwriter Sarah Crean, whose song "2:00 AM" blew up with over 4.6 million views after The Bun professed he "couldn’t get enough of it” (one of his signature phrases). Crean went from having only 295 monthly listeners to 170,000 monthly listeners and ended up signing with well-known record label AWAL.
@thebun91.3 Next song up: 02:00 AM - Sarah Crean #indiepop#indierock#menitrust#japanesebreakfast#indie#sarahcrean#thebun913#radiohost#spotifyplaylist♬ 02:00 AM - Sarah Crean
“My gratitude for it all is immense," Crean told Insider. "He's putting really incredible artists forward to such an open-minded following and it's opening so many doors for them…I think he's got something really special there."
Following successes like these, The Bun’s creative outlet has turned into something of a mission—one which he is fully committed to. The DJ also shared with Insider that he not only spends every morning scouring the internet for cool tracks, but he’ll also find local bands and solo artists to see them play at nearby venues.Of course, with his newfound internet clout, musicians often reach out to him for coverage. Like Minova, who submitted their song “I Miss You So” and got so many new followers they released a whole new single. (Of course, The Bun covered that, too.)
@thebun91.3 Next song up: I Miss You So - Minova #minova#dayglow#wallows#clairo#sarahcrean#indiepop#sadgirlstarterpack#thebun913#spotifyplaylist#radiohost♬ I Miss You So
For The Bun, helping aspiring artists potentially get out of any side hustles and instead focus on what they love is the best part of the job. "I just get a lot of joy out of them winning," he told Insider.
We see plenty of videos on TikTok with folks sharing their art, but it’s not every day that we see someone going out of their way to showcase someone else’s. The Bun is out there doing the dang thing, and doing it all with a huge dose of quirky charm. It’s something we can’t get enough of.
By the way—you can also find The Bun’s special curated playlist featuring these artists, and more, over on Spotify.
Dad found out his son bullied a kid at school and came up with a brilliant teaching moment
"I told him that we have the opportunity to make things right."
What do you do when you find out your kid bullied someone? For many parents, the first step is forcing an apology. While this response is of course warranted, is it really effective? Some might argue that there are more constructive ways of handling the situation that teach a kid not only what they did wrong, but how to make things right again.
Single dadPatrick Forseth recently shared how he made a truly teachable moment out of his son, Lincoln, getting into trouble for bullying. Rather than forcing an apology, Forseth made sure his son was actively part of a solution.
The thought process behind his decision, which he explained in a now-viral TikTok video, is both simple and somewhat racial compared to how many parents have been encouraged to handle similar situations.
“I got an email a few days ago from my 9-year-old son's teacher that he had done a ‘prank’ to a fellow classmate and it ended up embarrassing the classmate and hurt his feelings,” the video begins.
At this point, Forseth doesn’t split hairs. “I don't care who you are, that's bullying,” he said. “If you do something to somebody that you know has the potential end result of them being embarrassed in front of a class or hurt—you’re bullying.”
So, Forseth and Lincoln sat down for a long talk (a talk, not a lecture) about appropriate punishment and how it would have felt to be on the receiving end of such a prank.
From there, Forseth told his son that he would decide how to make things right, making it a masterclass in taking true accountability.
“I demanded nothing out of him. I demanded no apology, I demanded no apology to the teacher,” he continued, adding, “I told him that we have the opportunity to go back and make things right. We can't take things back, but we can try to correct things and look for forgiveness.”
@thehalfdeaddad Replying to @sunshinyday1227 And then it’s my kid 🤦♂️😡 #endbullyingnow#talktoyourkidsmore#dadlifebestlife#singledadsover40#teachyourchildren#ReadySetLift♬ Get You The Moon - Kina
So what did Lincoln do? He went back to his school and actually talked to the other boy he pranked. After learning that they shared a love of Pokémon, he then went home to retrieve two of his favorite Pokémon cards as a peace offering, complete with a freshly cleaned case.
Lincoln would end up sharing with his dad that the other boy was so moved by the gesture that he would end up hugging him.
“I just want to encourage all parents to talk to your kids,” Forseth concluded. “Let's try to avoid just the swat on the butt [and] send them to their room. Doesn't teach them anything.”
In Forseth’s opinion, kids get far more insight by figuring out how to resolve a problem themselves. “That's what they're actually going to face in the real world once they move out of our nests.”
He certainly has a point. A slap on the wrist followed by being marched down somewhere to say, “I’m sorry,” only further humiliates kids most of the time. With this gentler approach, kids are taught the intrinsic value of making amends after wrongdoing, not to mention the power of their own autonomy. Imagine that—blips in judgment can end up being major character-building moments.
Kudos to this dad and his very smart parenting strategy.
This article originally appeared on 3.24.23
Woman uses filters to prove that social media isn't real and people are thanking her
She's beautiful either way, but man, the filters are wild.
Social media has made it very easy to alter your appearance using filters. They may come in handy when you need to record a video but look a bit under the weather—just turn on a soft glow or a makeup filter, and boom, you're camera-ready in less than two seconds. But there has been a lot of talk around the use of filters and teen girls' self-esteem and unrealistic expectations seemingly placed on women.
One woman has taken it upon herself to strip away the filters to prove that, while she is beautiful, her face doesn't actually look the way it does with the filter on. The most interesting thing about these filters is that they're so good, you can't tell they're filters. Gone are the days of filters that made everyone look like a Glamour Shot from the 90s. These filters move with you and even have pores so no one can tell it isn't actually your face.
Well, it is your face—kinda.
Mimi Webb starts off the 20-second clip using the infamous Bold Glamour filter. It's the filter that has people questioning their perception of their own faces because the contrast is so jarring. But Webb doesn't stop with one filter. She puts on another and makes sure she emphasizes her use of a ring light. After turning the ring light off and taking all the filters off as the video is ending, the woman removes her makeup, revealing an inflamed, irritated and blemished face.
People flocked to the comments to thank her for exposing the truth behind filters.
"You're beautiful & this message is SO important thanks for the reminder," one person wrote.
"You are beautiful. In real life, we all have imperfections. As a mature woman, I appreciate your honesty. Thank you," another said.
"Thank you so much. You did not know how much this was needed," a woman commented.
Social media can really do a number on people's self esteem, especially when they're comparing themselves to something that's not real. Messages like the one Webb shared can help pull back the curtain on the reality of social media. Watch her video below.
President Obama's career advice for young people is only 3 words. It's simple but spot-on.
He knows a thing or two about career advancement.
If you’re looking for career advice, there are few better people to ask than former President Barack Obama. After all, he got the most prestigious job in the world after only spending four years in the U.S. Senate and seven in the Illinois State Senate.
Obama clearly knows how to work his way up in the world.
Now, he’s investigating what it means to have “good” work in his new Netflix show, “Working: What We Do All Day.” According to Netflix, the show explores compelling ideas and issues about labor and work, while focusing on the lives of individuals in various professions.
Obama sat down with LinkedIn Editor-in-Chief Daniel Roth to talk about employment-related topics, including the role of work in our lives, disruptions in the workplace in the new Millenium, and the coming AI revolution. During the 15-minute conversation, Obama shared his most important career advice for young people, and it was simple, especially for such a thoughtful, well-spoken man. The former president said, “Get stuff done. Just learn how to get stuff done.”
He then unpacked what he meant by his simple motto.
“I've seen at every level people who are very good at describing problems, people who are very sophisticated in explaining why something went wrong or why something can't get fixed, but what I'm always looking for is, no matter how small the problem or how big it is, somebody who says, 'Let me take care of that,'” Obama said. “If you project an attitude of, whatever it is that's needed, I can handle it and I can do it, then whoever is running that organization will notice. I promise.”
Obama is spot-on with his analysis. You can talk about things all day, but what really matters is taking action and making things happen. Maybe that’s why his campaign slogan in 2008 was a simple three-word phrase about taking care of business, “Yes, we can.”
"The best way to get attention is, whatever is assigned to you, you are just nailing. You're killing it. Because people will notice, that's someone who can get something done," Obama continued.
As someone who has managed people at the top levels of government, Obama has a rare understanding of the importance of relying on people to carry out essential orders and knowing who to trust to get it done efficiently and correctly. When you’re president of the United States, you must have complete trust in the people you delegate work to because thousands or even millions of lives could be at risk.
Obama also added that young people shouldn’t focus on a specific job title but on things that interest them. "The people that I find are the most successful are the people who say, 'I'm really interested in computers and figuring this stuff out,' and they end up being a Bill Gates," he said.
People will be happier with careers that are rooted in their interests because they’re doing what they love. We only get 24 hours in a day. Most people sleep eight, work eight and enjoy eight for themselves. Everyone loves sleeping and time off, but you can be happy 24 hours a day when you love your job.
Firefighter who rescued toddler from burning building meets the boy's son 23 years later
We don't always get to see what happens after a heroic deed.
We all know that Upworthy loves a good hero story. Suddenly humanity seems a little less dark after hearing about students coming to their teacher’s rescue, moms taking on entire swarms of bees to keep their kids safe or entire bank heists being thwarted by a single hug.
However, we rarely get a glimpse of what happens after those feel-good stories take place. It’s not often that we get to witness firsthand the lasting impact made from one good deed. That’s what makes this story so special.
Xavier Dimples was only 2 years old when his house caught fire, leaving him trapped inside. Without a firefighter named Jeff Ohs bravely entering the burning building to pull the toddler out of the wreckage and resuscitating him, Dimples would have perished.
Twenty-three years after the incident, Dimples was able to reunite with Ohs, introducing him to his son who was the exact same age as Dimples when Ohs rescued him.
“After I was resuscitated I was in a coma for a month after that. I could never repay [Ohs] for giving me a chance at life, I can only live a great life for him & my son. I owe him my life,” Dimples wrote on Twitter, along with a side-by-side photo showing him as a toddler in the firefighter’s arms and a picture of Ohs holding his two-year-old.
When I was 2 years old my house caught on fire & I was trapped inside, I ended up dying that day & this firefighter, Jeff Ohs, saved me from that building & brought my back to life. Now 23 years later he is holding my 2 year old son. I literally wouldn’t be here without him pic.twitter.com/FLxmKG19DF— XD (@XavierDimples) May 30, 2023
The moment was equally profound for Ohs. Soon after Dimples published this post, Ohs replied. “Dude!!!! You are a fighter through and through. And honestly you scared the sh*t out of me that day. So so blessed for the outcome. Love you guys.”
“I thank God that you lived to tell your story. I thank God for my firefighter brother Jeff! Sometimes firefighters/medics don’t always know the outcome of the ppl they rescue once they’re delivered to the hospital. But hearing [your] story brings tears to my eyes!” one person wrote.
“The look on her face in the older picture? He’s definitely determined not to let you go down. I’m so happy that he got you back!” added another.
“I worked with Jeff and I know his story well. You make our jobs worth everything we go through. Thank you for sharing,” a former coworker of Ohs commented.
Since that fateful day a little over two decades ago, Dimples and Ohs have been friends. Dimples later quipped that he could pull up to Ohs’ house right now if he wanted. That kind of closure is rare. Firefighters risk their lives for complete strangers out of a genuine desire to help, but they don’t often get to see how their efforts truly paid off. This must have been such a rewarding experience for Ohs.
We never really know where any of our good deeds may lead. But knowing the results isn’t what drives people to commit brave acts. It’s that impulse we all have to help one another and the inner knowing that somehow we are inexplicably connected. The impulse is louder for some than others, or more or less frequent, but answering it can lead to amazing things.