Living with multiple sclerosis can bring about a number of uncertainties – from navigating symptom and treatment options to dealing with emotional and lifestyle changes. While every journey with MS is unique, one thing is universal: no one should have to face MS alone. This is why the Multiple Sclerosis Association of America (MSAA) created My MSAA Community.
Continue readingBy Stacie Prada
Self-advocacy is hard work. We’re likely advocating for ourselves in tiny ways all the time, and we don’t notice when there’s little to no resistance. Frustration grows when we meet opposition and live with pain and unmet needs.
Barriers to self-advocating: Sometimes, I don’t know what I need, I’m unsure of what resources exist that could help, or I’m not being heard by those who could help me. Even if they want to help, they might not know how.
Continue readingWe all know the feeling. That surge of energy, the desire to participate, to feel “normal” for a while. Whether it’s attending a family gathering, tackling a long-awaited household project, or simply enjoying a few hours out with friends, those with multiple sclerosis (MS) often seize these moments with both hands.
But as many in our community understand all too well, this activity often comes with a significant price: the dreaded “MS tax.”
Here is what our community members had to say about how they deal with physical and mental exhaustion after overexerting themselves.
Continue readingBy Bonnie Lynn Ellison
May is a good time to reflect on myself, and what my younger self would be proud of. When I was young, I thought life was a rodeo! I competed in the National Little Britches Rodeo from 8 to 18 years old, and was proud of my ribbons, buckles, and trophies! I learned, if you got thrown off, you got back on the horse!
When I was young, I also played my guitar and sang in talent shows, from 7th grade through high school. In college, I performed with the FAB Company. We toured nationally in the early 1970’s, recorded four albums, and were contracted with the major international talent agency, William Morris. I’m proud that we wrote our own original music, songs, and comedy. We did concerts! I thought I was Taylor Swift!
I fell in love, got married, and two years later, I was diagnosed with multiple sclerosis. I was 25. It affected me like a stroke, on the right side of my body. I had never heard of this disease, so it was like an old rodeo injury to me. It took about three years to recover enough to write, sing, and perform again. And there were no assurances that it wouldn’t return. I had always been athletic and healthy. It was shocking for me, and a struggle.
Continue readingBy Nana Opong-Owusu
They say the habits, values, and choices we’ve planted in our past, shape the garden we stand in today — the decisions we’ve made, the habits we’ve formed, the passions we’ve nurtured, and the values we’ve carried quietly in our hearts. I didn’t appreciate these types of thoughts as a child, but as an adult I oftentimes find myself reflecting.
Growing up, I was always drawn to movement. Sports weren’t just a hobby — they were a way of life. Whether it was the freedom associated with biking around the city with my childhood friends, the camaraderie of my basketball teams, or the adrenaline of soccer tournaments, exercise and movement have always grounded me. Now as an adult, I see it gave me structure, perseverance, and most importantly, a familiarity with pushing through adversity. But alongside that physical drive, I’ve always carried something else: a caring heart. A giving heart.
Continue reading“How are you?” is a standard greeting among friends and acquaintances. It can be a societal expectation or norm. Answering when living with a chronic disease like multiple sclerosis (MS) is anything but simple. Those with MS are rarely the standard answer of “fine.”
MultipleSclerosis.net published an article about navigating the “How are you” question with MS. The article resonated with many members, and it generated a number of comments! Here are some community insights.
Continue readingBy Samuel Fitch
This is my first blog post—so I’m hoping readers will extend a little grace. I’m 44 years old at the time of writing, and lately I’ve been reflecting on the last two decades of my life. One question keeps coming to mind: Would my 24-year-old self be proud of the man I’ve become and the career I’ve chosen?
At 24, I was newly married—Jessica and I had tied the knot in 2003. We were less than a year into marriage, expecting our first child, and I was working full-time at my family’s restaurant. We hadn’t bought our first home yet, but I was riding high on love, youth, and big dreams. At the same time, I was still dealing with some self-destructive habits—drinking, gambling—trying to figure out who I wanted to be as an adult.
Fast forward twenty years, and life has taken some sharp, unexpected turns. Jessica and I have grown stronger together. We’re now parents to four incredible children—three daughters and our youngest, a son. But that early vision I had for my career didn’t quite pan out the way I imagined.
Continue readingLiving with multiple sclerosis (MS) takes a huge toll on the body. One of the greatest challenges is mobility changes. Those living with MS often find their activity level changes. Things that once came easily, such as walking, cooking, gardening, and shopping, become difficult.
MultipleSclerosis.net published an article about coping with changes in mobility. Many community members responded by sharing their experiences. Here are some of their insights.
Continue readingAs MSAA continues to highlight MS Awareness Month this March through the campaign theme of “Empowered from the Start with MSAA,” our efforts to raise awareness and provide vital support to the MS community remains our priority. This month specifically, we are spotlighting both educational and supportive resources that may be of use to those who are newly diagnosed and navigating their MS journey. With this in mind, MSAA would like to present one of the many free resources available to the community – MSAA’s Podcast.
This month, MSAA has released a three-part podcast series titled, “If I Knew Then: Reflecting on an MS Diagnosis.” This special series highlights expert insights for newly diagnosed individuals, as well as the personal stories and experiences from community members with MS.
Being diagnosed with MS can be disheartening news for many since the road ahead can be so scary and unpredictable. If left undiagnosed, it can lead to severe disability over time.
It is of utmost importance that you schedule your appointments with your neurologists and other care providers regularly so that they can help with managing your symptoms and keeping your MS at bay. The high costs associated with the treatment make medical coverage crucial as over time, MS may unfortunately place a financial strain on individuals and families. Fortunately, there are organizations like the Multiple Sclerosis Association of America (MSAA) can direct you to valuable resources while navigating the bumps along the way.
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