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Jimmy has built a wonderful life, but his diagnosis presented some unexpected challenges.

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Muscular Dystrophy Association

Growing up, Jimmy Valdes' parents raised him to focus on all the things he could do, not the things he couldn’t.

Jimmy was diagnosed with spinal muscular atrophy (SMA) in 1971 when he was only 4 years old. SMA is a degenerative spinal disease that causes weakness of the voluntary muscles — often those in the shoulders, thighs, hips, and back. People who have it usually need assistance to complete physical tasks.


Check out Jimmy's story here, or read more below:

As Cuban immigrants, Jimmy's parents were driven and determined to give their family the most normal life possible. They took him on family vacations. He played catch with his dad. He went to school and went on dates and read comic books.

His parents made it clear to him that he would always need help but that nothing was impossible. And he believed them. Jimmy told Upworthy, "If not for the decisions they made back then, my life wouldn't have turned out the way it did. And it's still a work in progress, it's every day, every week, every month."

Jimmy can't do everything, though, and needs caretakers to assist him through his daily routine.

He needs help completing all physical activities, from hygiene to meal prep to transportation. This is a reality that he's dealt with for most of his life, and he hasn't let it limit him.

There are systems and programs in place to help people like Jimmy who live with disabilities. Unfortunately, those supports sometimes fall short. Jimmy’s reality is proof of that.

All images via Muscular Dystrophy Association/YouTube.

You see, in spite of Jimmy’s severe disability, he does not qualify for disability benefits.

He's the breadwinner in his family — he has worked for CBS for over 20 years — and because he earns an income that exceeds the amount allowed, Jimmy does not qualify for disability benefits through the Social Security Administration that would help him pay for the care and services necessary to live his everyday life.

Almost all of his care he pays for out-of-pocket.

And the costs are astronomical. He said he spends hundreds per week on caretakers. He even quipped that he's been audited by the IRS a number of times because they couldn't believe that a single man had such exorbitant expenses.

As he put it, "it costs more for me to live life."

The Social Security Administration makes it clear that it's possible to work and receive benefits, so long as your earnings aren't "substantial." What does that mean? For 2016, the SSA site says that per month, "we consider earnings over $1,130 ($1,820 if you're blind) to be substantial."

So, you can be making a barely livable wage, especially in a city as notoriously expensive as New York City and not qualify. If you make more than the figures mentioned above, your care isn't covered.

This is Jimmy's dilemma, and he’s not the only one.

The Muscular Dystrophy Association shared a post on Facebook asking for comments and insight regarding efforts to work while dealing with a muscle-debilitating disease. The responses are telling.

One person mentions that, like Jimmy, he doesn’t meet the stringent income requirements to receive benefits, but that "as long as I can work that is a far more fulfilling life then having to watch every cent to be sure I'm poor enough." Another person mentions that she is "afraid to get any kind of raise or promotion due to income caps."

These are men and women who want nothing more than to live life on their terms but who are, in effect, limited by a policy that is meant to serve them.

The very system that was built to support them has let them down.

As hard as it may be to pay for his care and continue supporting his family, Jimmy isn't letting it prevent him from living the life he dreamed of.

He continues to work because he genuinely likes what he does. He's built a career and has a network of people who support him. He met and married the love of his life and is devoted to her and her family, all of whom remain a source of endless inspiration for him. He goes to concerts and games and makes every effort to enjoy the life he's worked so hard to build.

In addition to working hard toward his own self-sufficiency, Jimmy is focused on helping others in a similar situation have the opportunity to live life on their terms.

He wants to use his voice to bring awareness to the issues that people who have disabilities face and to help find solutions. He wants everyone to have the opportunity to live life their way, much as he has. And he wants the systems that are built to support people like himself to not be the very thing that limits them.

He's not yet sure where to start, but he's determined.


People with disabilities can and do live meaningful and contributing lives, and we can work together to help ensure that the systems intended to lift up individuals with disabilities do not hold them back.

MDA is proud to be part of the collective effort to break down barriers to meaningful employment for those living with disabilities, including looking at ways to help individuals work while keeping benefits like personal care in place. Get involved today by joining MDA’s advocacy efforts, contributing to help individuals like Jimmy live unlimited, or sharing your story about how you balance employment and personal care needs by emailing advocacy@mdausa.org.

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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.

Courtesy of Sanofi

Helga, Nathalie and Gina all have MS, and their experiences show how differently the disease can manifest.

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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.

woman with horse, woman riding horseGina 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.

woman in wheelchair holding medal, woman rowingNathalie 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.”

woman exiting water after swimming, woman with great daneHelga'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.

MAT-GLB-2301642-v1.0-05/2023

This article was sponsored by Sanofi. Participants were compensated when applicable.

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Obama clearly knows how to work his way up in the world.

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“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.”

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Photo by Andrew Gaines on Unsplash

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