Taking Control One Step At a Time

Living with multiple sclerosis (MS) frequently comes with unique challenges, and taking control of our lives looks different for everyone. Those who have a sense of control over their life are more likely to take ownership and make the necessary changes to better manage their well-being. On the other hand, if we believe that things are completely out of our hands, we may be less motivated to make healthy changes and harbor feelings of hopelessness. While MS can be unpredictable, there are many ways we can regain and maintain a sense of control over our lives and take a proactive approach to our health.

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What My MS Diagnosis Taught Me

By: Stacie Prada

My multiple sclerosis diagnosis was sudden and unexpected. Unlike others who undergo years of testing, monitoring, and uncertainty, my diagnosis occurred within two months after a major MS exacerbation. While it was a turbulent and scary experience, at least it was relatively quick.

Because my diagnosis was swift and not anticipated, I learned serious illness can be invisible. Being healthy and having a chronic illness can both be true in the same body. Things are not what they appear. Ultimately, I learned my normal wasn’t normal.

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Helpful Strategies Available Through MSAA’s Podcast Series

With MSAA’s 2024 MS Awareness Month campaign theme of “Improving Lives Through Supportive Connections,” we are proud to have introduced various initiatives throughout the month of March focused on the power of social interactions and connections, mental health and emotional support, as well as tools that may assist in the quality of life for those with MS. One of the free educational and supportive services that we introduced this month was our podcast mini-series titled “Finding Joy in the Process: Managing Mental Health in the MS Journey.”  

This three-episode series, featuring behavioral medicine specialist Dr. Amy Sullivan, brings light to the importance of prioritizing health and wellness throughout the MS experience and journey by offering insightful tips, resources, and more. 

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Contribution and Coping – Don’t Stop

There will always be hard days, we simply cannot escape this. Have you ever woken up and felt so fatigued, but knew you had so much to accomplish that day? Or maybe your day was going well, and bam…you’re hit unexpectedly. It’s easy to feel defeated, but what would your day look like if you kept going?

Coping is the ability to deal “successfully” with a challenging situation. The successful part is the grey area. What does that mean to you? To me, successfully dealing with something hard is having a moment of clarity to keep going, even if it’s for a short period until we must cope again. It could also be continuing through our day-to-day while having something in the back of our mind that we are reminded of every so often.

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MS & Acceptance

By: Brittany Quiroz, “A Hot MS”

How do we really come to terms with accepting our new reality with an incurable progressive disability? Right off the bat we probably feel like we have been predisposed to failure. Self-acceptance requires us to really be comfortable with our present situation and let’s face it, there are plenty of parts about living with Multiple Sclerosis that are not considered “comfortable”. MS can present an abundance of changes and unexpected whiplash that we do our best to navigate through. 

The key to sustainable self-acceptance relies on our ability to stay present while not setting unrealistic expectations for ourselves. We can be really good at beating ourselves up, can’t we? It doesn’t help that we live in an era where competition is all around us. Our status in society can easily be determined based on how many likes we get. How many followers we have. What car we drive. What our zip code is. What job we have. It’s easy to feel we’re in constant competition with the world. 

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Infused

By Chernise Joseph

I wanted to do some corny joke like, ‘Yep, that’s me! I bet you’re wondering how I got here,” for the photo from my infusion on Friday, but it seemed a little too double-edged… badumtiss. No? That’s alright, infusion jokes are never funny unless they’re mixed up juuuust right. Ha, okay, in all seriousness – my multiple sclerosis said hello to me on Friday. Well, I suppose it always says hello, but it likes to do it in unique ways sometimes like in the form of an 8-hour infusion. Whew! You read that right. Eight hours of beeping, vitals, tubing, fluorescent lights, too-cold rooms…

I used to hate infusion days. They were long, yes, but they were mostly scary to me. I didn’t know what to expect, nor did I really understand just how important what I was doing was. Of course, I had done as much research as a 23-year-old with a humanities degree could do, but my brain still felt frazzled. What if I spontaneously combust? What if I grow an extra head? What if I’m patient zero for the zombie apocalypse? It was all I could think of going up to the infusion, during it, and even after for a while.

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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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Ask the Expert – Mobility

Featuring Barry A. Hendin, MD 

MSAA’s Chief Medical Officer  

Headshot of doctor Barry Hendin, chief medical officer for MSAA
Barry Hendin, MD

Question: What types of exercises are best to help with mobility and walking issues in MS?  

Answer: A number of different exercises can improve and maintain walking and mobility skills along with safety. Many of these exercises can be learned through formal physical therapy or through online programs. They can include exercises focused on range of motion and flexibility. Alternatively, they may focus on strengthening through resistance training. Some exercises are directed toward general cardiovascular health and others focus primarily on balance. Although any of these forms of exercise may be useful, specific exercise for an individual should focus on an individual’s exact needs. 

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