Stay Connected

Having supportive connections is vital for coping and managing the daily struggles that come with MS. Establishing those connections early can greatly impact your well-being, especially during difficult times in your MS journey. Below are ways to make those connections that will help a great deal in feeling empowered and more confident to cope with challenges:

Connecting with MS support groups

Support groups can be a powerful tool as they can help you not feel lonely while navigating through the different facets of your MS journey. They can equip you with information, knowledge, and support. You can also find friends for life who share similar interests and passions as yourself. Such social networks provide a safe space to interact and learn from other MS warriors through their personal experiences and feedback.

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Competence and Confidence: Navigating Life with Multiple Sclerosis

MS Awareness Month is here and it’s crucial to acknowledge the unique challenges faced by individuals living with MS. From unpredictable symptoms to treatment decisions, individuals with MS navigate a complex landscape filled with uncertainties and obstacles. In light of these challenges, promoting both competence and confidence is essential for managing the condition and maintaining overall well-being.

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Leidy Burgos – March 2024 Artist of the Month

MSAA features the work of many talented artists affected by multiple sclerosis as part of our annual MSAA Art Showcase. Each month we share these artists’ inspiring stories and beautiful artwork with you as our Artist of the Month. This month, we celebrate Leidy Burgos as March’s Artist of the Month. Leidy is from Philadelphia, PA.

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MS is Like a Fingerprint

Multiple Sclerosis (MS) is a complex and often misunderstood diagnosis that affects millions of people worldwide. Despite its prevalence, there are many misconceptions surrounding MS that can impact the lives of those living with the condition. Although I personally do not have MS, I’ve worked closely with individuals over the years who live with MS, and I’ve learned and observed firsthand the challenges they face and how unpredictable the disease can be. A saying I’ve heard that stuck with me is, “Multiple sclerosis is like a fingerprint”. This saying speaks to the fact that every person’s journey with MS is unique and looks different for every person. There are so many misconceptions surrounding MS and I’d like to dive into what I wish others knew about the disease with the hope of fostering understanding, compassion, and support for those navigating life with MS.

  1. It’s Not Just Physical: One of the most common misconceptions about MS is that it only affects physical health. While MS does manifest with physical symptoms such as tremors, weakness, and mobility issues, it also impacts cognitive function and mental health. Symptoms can include brain fog, memory changes, and mood fluctuations and these aspects of MS are less visible and frequently overlooked.
  2. Unpredictability: Living with MS means living with uncertainty. The course of the disease is unique from person to person, and symptoms can fluctuate unpredictably. This uncertainty can pose many challenges in day-to-day life. In what feels manageable one day could become overwhelming the next.
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A Wish List

Getting diagnosed with MS can be scary and overwhelming. Not knowing what lies on the road ahead of you can be very frustrating. MS being an unpredictable disease comes with its own set of twists and turns as symptoms can highly vary from individual to individual. Here are some things I wish people knew about MS:

  • An individual with MS goes through a lot of challenges daily. Simple activities like showering, meal prep, washing dishes, etc. can seem like daunting tasks.
  • MS can make one feel isolated and lonely especially if one doesn’t have a strong support system. There might be some days when fatigue is ruthless, those are the times when individuals going through MS might need someone to just listen and maybe extend a helping hand.
  • The price of medications is skyrocketing every year. Many are not able to continue their treatment regimens as they find it difficult to afford them.
  • Medications cannot cure the disease, just slow the progression.
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Only 12 Spoons

I spoke with Alice, a long-time patient with secondary, progressive MS. When I asked Alice the question, “What do you wish others knew about MS?” she shared “I only have 12 spoons.” I was initially confused, but then Alice explained that these hypothetical spoons symbolize her energy in a day. These could be simple tasks to the average person, such as getting out of bed, washing your face, brushing your teeth…before you know it, three spoons have already been used for the morning. Alice says that using this analogy is a way for her friends and family to better understand her energy level throughout the day, so they can plan wisely!

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We Are More Than Meets the Eye

Multiple sclerosis is often a misunderstood diagnosis. Many people are unaware of the complexities of the disease, and those with an MS diagnosis frequently become advocates, whether they realize it or not. The resilience of those with an MS diagnosis never ceases to amaze me. Not only do they have to learn about the disease and all its intricacies, but they often must educate those around them about it as well. I wish people knew that those with an MS diagnosis are truly courageous, and every journey is unique.

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Somos más de lo que se ve a simple vista

La esclerosis múltiple suele ser un diagnóstico incomprendido, y muchas personas desconocen las complejidades de esta enfermedad. La resiliencia de las personas con un diagnóstico de EM nunca deja de sorprenderme. Las personas con EM tienen que aprender sobre la enfermedad y todas sus complejidades, y con frecuencia también deben educar a los que les rodean al respecto. Me gustaría que la gente supiera que las personas diagnosticadas con EM son realmente valientes y que cada experiencia es única.

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Black Herstory

By Chernise Joseph

For reasons unknown, forcing myself to sit and write lately has become increasingly difficult. The stresses of life coupled with just being sick have made one of my favorite hobbies intimidating to me. How do you write what you cannot see inside your own head?

Anyway, as I sat scrolling through some mind-numbing app, an informative blurb caught my attention. It told the story of Lake Lanier, a formerly thriving African American community in Georgia that was destroyed. That, of course, isn’t a tale new to any of us who have lived in America for any length of time, but it got me thinking about Black History Month or, more importantly, Black Herstory Month.

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Vision Boards: A Tool for Personal Development

Focusing on personal growth is often the theme of the new year. It involves identifying those areas of our lives that we would like to improve and dedicating time and effort to make those changes happen. Investing in ourselves can be challenging. How many of us have established a goal only to lose motivation or traction halfway through the year? Investing in ourselves is an ongoing effort worth committing to for personal and professional reasons. A vision board is one of the tools you can use to visualize your goals and find motivation to invest in your well-being in 2024.

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