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.
- He wanted to run a half marathon with his Mom, who has MS, so he ... ›
- Selma Blair just rocked her first appearance since her MS diagnosis with a cape and cane. ›
- Husband builds rickshaw for wife with multiple sclerosis so they can ... ›
- They met over a shared diagnosis. Their love shows what’s possible for people with multiple sclerosis. ›
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
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?
Man lists things millennials grew up with that Gen Z would be outraged by
"Imagine telling them that their free unlimited minutes only started after 9:00 and on the weekends."
There will likely always be some kind of playful generation war going on between older and younger generations. This time it's a millennial throwing what some may deem as truth bombs at Gen Z, seemingly unprompted. (Well, it could be that he's upset that Gen Z is getting all the credit for being tech savvy since the majority of his complaints were technology related.)
Dwight Thomas uploaded a video to TikTok listing things that millennials grew up with that the generation below him would be outraged by. As someone who would be considered an elder millennial by some people, I'd have to agree. The man makes some valid points about things we experienced as teenagers that would likely make teens today aggressively send out Change.org petitions.
"These new-age kids will never understand the struggle. Imagine telling them that their free unlimited minutes only started after 9:00 and on the weekends," Thomas says into the camera.
He goes on to talk about trying to have a love life during those times. Since phone access was restricted, you had limited time to woo anyone after school, which meant the alternative was attempting to do it during school hours. But that was also a problem because teachers were kind of tattle-tales back then, according to Thomas.
"It's not even like you could talk to your friends at school 'cause they would call your house and tell your mama that you didn't care about your education and you wasn't trying to learn," he complained. "Because all you come to school for is to sit around and talk to your friends."
Honestly, the video is causing flashbacks, especially when he talks about teachers intercepting love notes and reading them in front of the class. Thomas jokes about how millennials were making history with their self-taught coding skills on MySpace while the younger generation has the help of AI. The entire video is full of head-nodding moments if you grew up a millennial, or like me, a Xennial. Watch it below.
We was out here making history! But go off though..
21 memes that everyone who grew up in the '90s totally understands
This was what the 1990s was like.
If you grew up in the '90s then you were part of the last generation of kids who lived without being constantly connected to the internet. You lived during that last gasp of the analog era where most of your entertainment came on tape and if you wanted a new pair of Guess jeans or LA Gear shoes, you had to drive to the mall.
Also, if you wore parachute pant, aka "Hammer Pants," people actually thought you were cool.
Families mattered on Friday nights.
People listened to rock 'n' roll because it was important.
Hip-hop was at its peak.
People spent time talking to each other instead of staring at their phones.
Some folks over at Reddit have been sharing funny memes that explain exactly what life was like in the '90s. From the terrible pastel-colored designs that were everywhere to the charming, but antiquated, technology kids today will never understand.
Here are 19 of the best memes from r/90s/.
1. 1992 was 30 years ago
Sorry, if that made you feel old.
2. "Go! Go!" (Fill in the blank)
This person is living the Gen X dream.
3. Oh snap!
There was no greater diss in 1991.
4. Make a run for the border
Does this picture make you instinctively think "You quiero Taco Bell"?
5. In the '90s, every night was a Blockbuster night
It's like looking back in time.
6. We'll always have Chuck E. Cheese's
Our immune systems were forged through miles of sweaty PVC.
7. Don't touch the 'purple stuff'
Ingredients: Water, High Fructose Corn Syrup and 2% or Less of: Concentrated Orange Juice, Concentrated Tangerine Juice, Concentrated Apple Juice, Concentrated Lime Juice, Concentrated Grapefruit Juice, Concentrated Pear Juice, Citric Acid, Ascorbic Acid (Vitamin C), Thiamin Hydrochloride (Vitamin B1), Natural Flavor, Modified Cornstarch, Canola Oil, Sodium Citrate, Cellulose Gum, Sucralose, Acesulfame Potassium, Neotame, Sodium Hexametaphosphate, Potassium Sorbate to Protect Flavor, Yellow 5, Yellow 6.
8. These actually existed
How in the world did they cram 25 different colored pens into one super writing utensil?
9. Nu metal didn't last long
10. People aged quickly in the '90s
This is what happens when you have children.
11. This weighed 25 pounds and went everywhere you went
I can still hear the sound of the rumpling plastic as I flip through the pages.
12. They got 'Jerry Maguire'?
Of course they have "Jerry Maguire." In fact, they have 500 copies of "Jerry Maguire."
13. The hippest computer lab ever
After the iMac dropped, only vertified dorks used an IBM.
14. Just looking at this hurts
This may have hurt your fingers, but was probably safer than licking the battery to see if it still had "juice."
15. It's like they didn't want you to play solitaire
Solitaire wasted more people's time in 1998 than Instagram does in 2022.
16. In 1993 this could cure anything
Stomach ache? Flu? Munchausen's syndrome? This unique combination would have you back on your feet in no time.
To quote a popular philosopher from the '90s, they went together like "peas and carrots."
18. This cup went perfect with pizza
If the joint had all-you-can-drink refills, you drank 'em out of this cup. It held tokens, too.
19. The only pattern that mattered in the '90s
Throw on those shorts, then hop in your Miata and get yourself some action!
This article originally appeared on 01.06.22
Artist makes everyday spaces magical by cleverly adding pixelated, old-school pop-culture icons
Anyone who grew up in the late '80s and early '90s—Gen X, I’m looking at you—grew up in a world that was dominated by 8-bit graphics. Back in the day, computers and video game systems had a limited amount of processing power so the graphics had to be simple.
That meant the heroes that we played with such as Mario from Super Mario Brothers or Link from The Legend of Zelda, had to be super simple looking and we had to fill in the rest with our imaginations.
Video graphics have come a long way over the past 30-plus years, but people still love the old designs because it takes them back to a simpler time. This has led to an 8-bit movement where people use their creativity to make art within the confines of the limited medium.
Some people also use the limited 8-bit soundscape to create music that’s reminiscent of the old games. Sure, computer game music may be much more sophisticated these days, but is there anything better than the soundtrack to the original Tetris? Would Super Mario Brothers be the same with a sophisticated soundtrack? I think not.
Swedish artist Johan Karlgren, who goes by the name Pappas Pärlor, creates pixelated 8-bit-looking art and then inserts it into everyday scenes. The interesting thing is that his 8-bit art isn’t done with computer graphics, but Perler beads.
Perler beads are small, plastic beads that one places on a grid, and when the picture is done, they are melted with a household clothing iron. The beads are a fun hobby for kids who love to see the melting beads ooze their way into a fully-formed picture.
Although they weren’t originally intended to make 8-bit art, because the beads are placed on a grid when they melt together the designs look like they came straight out of a Nintendo Entertainment System.
Super Mario 3 Tanooki Suit Perler Beads Timelapsepic.twitter.com/Ywed4B3y47— Soma \ud83d\udc9c\ud83c\udf19 | AlleyCat \ud83d\ude38\ud83d\udc08\u200d\u2b1b (@Soma \ud83d\udc9c\ud83c\udf19 | AlleyCat \ud83d\ude38\ud83d\udc08\u200d\u2b1b) 1584560959
Karlgren recreates iconic images from comics, cartoons, video games and movies with the beads and then adds them to the scenarios, turning the mundane into the whimsical.
What’s Karlgren’s big inspiration? “Anything that makes me feel something,” he told Bored Panda. “It could be anything from childhood memories to politics or people doing awesome stuff that I wanna interpret.”
For Karlgren, his work is the byproduct of having a good time. “I don’t really choose what to create. My work is sprung from playing, and I’ll try to go with the ideas that come up in my head,” he said.
One of the hallmarks of Karlgen’s work is taking drab places such as a parking lot or other types of urban infrastructure and livening them up with the addition of one of his Perler bead creations. "It's something that makes me happy, and hopefully other people [when] seeing it as well," he told Newsweek.
Karlgren is a father of four and started posting his creations on Instagram back in April 2014. Since then, his fun, old-school designs have earned him more than 144,000 followers. Here are some of his coolest, and funniest 8-bit designs.
Raiders of the Lost Fence Knob
Mario Kart: Snow Speeders
"Here's 8-Bit Johnny!"
The Man of Steel
That Creep Can Roll
Friendly Neighborhood Spider-Man
Anthony Adams Rubbing Hands Meme
"I Said God Damn!"
"Take My Money!"
Darth's Day Off
"Go Ahead, Make My Day."
The Homer Meme
This article originally appeared on 02.25.22
Mom shares her autistic son's 'sensory friendly' movie experience and how to find them
"Nobody is looking at you weird because all the families are there for the same reason."
Going out to see a movie is a classic fun family activity, but for some families, it's an outing that causes far more stress than it's worth. When you have a child who needs to move or make sounds in order to function, sitting quietly through a two-hour movie simply isn't going to happen.
That's why major movie theater chains have started having dedicated "sensory showings" of feature films for families with autistic members or others who have sound and movement needs that don't mesh well with traditional moviegoing etiquette.
Camille Joy of the Moments of Joy Podcast shared a video her son, Maison, enjoying a sensory showing of Disney's "The Little Mermaid." Maison can be seen walking up and down the aisle stairs during the film in the post, with Joy sharing how the experience went.
"In my stories the other day I was expressing my desire to bring Maison the movies but I knew he wouldn’t do well in a typical theater setting," the mother of five wrote on Instagram. "A few of you told me about sensory movie days so I googled this in my area. There were so many theaters that do this."
"Sensory movies are for children like ours," she explained. "They are advertised as safe space where guests are free to express themselves by singing, crying, dancing, walking around, talking or shouting while enjoying Hollywood’s latest films!"
"Maison got to be himself," Joy continued. "Singing, loudly humming, walking throughout the theater and he wasn’t the only one, that was my favorite part! Nobody is looking at you weird because all the families are there for the same reason. I had minimal anxiety in this atmosphere and Maison was singing his little heart out."
#fyp #fypシ #asd #autism #autismawareness #adhd #autismacceptance #specialneeds #autistic #autismmom #autismfamily #aspergers #autismspectrumdisorder #autismspectrum #autismsupport
Other parents chimed in with their own experiences with their kids with unique sensory needs. While some still find movies a challenge because their kids are sensitive to sounds in general, others loved having the dedicated showings where their kids could feel free to be themselves without worrying about disturbing others.
"Yes!!!! Regal Movie theaters in NYC do early viewing," shared one parent. "I was able to tell my Tyler to see his Mario Movie, which was such a relief. Only time he's ever sat through one. He did get up and became restless but stayed focused. There are fewer people and it is such a relief. I'm glad our Maison was able to enjoy the movie."
"I love this our son did great," shred another. "We're definitely doing this again."
But the majority of comments were from people who had no idea this was even a thing and were so relieved to hear about it.
Taking your child to the movies is something many parents look forward to, and the fact that parents of kids with sensory needs now have a way to do that without worry is huge. And it appears all of the major movie theater franchises have some version of this offering for families.
According to AMC Theatres, the lights are turned up and the sound is turned down at their Sensory Friendly Films "so you can feel free to be you at these unique showings for people living with autism or other special needs."
Regal Cinemas calls them "My Way Matinees," which also have the lights up and the sound lowered and where "guests are free to express themselves by singing, crying, dancing, walking around, talking or shouting."
Harkins' Sensory Friendly Screenings "include brightened light levels, reduced sound volume and room for guest interaction." They also allow outside snacks to be brought in.
Studio Movie Grill's website says, "Special Needs Screenings are shown with the lights up and the volume lowered and children are free to move around, talk, or even dance in the aisles during the movie. The sensory friendly screenings are free for children with special needs and their siblings." (Adults still pay a "before-noon price.")
Each theater chain has its own schedule for these special showings, so check with your local movie theaters to see when they offer them. Joy recommends Googling "sensory movies near me," but if you aren't in a major market you may have to call your local theater to find out if they offer sensory-friendly film showings.
Sometimes inclusivity involves welcoming everyone into the same space and sometimes it means creating special spaces for people whose needs differ from others. Three cheers for movie theaters recognizing this need and providing a way for everyone to experience the joy of watching movies on the big screen.