Building your Fortress

Posted on August 25, 2025 by Teena Palathanam

An individual going through a chronic illness like MS may be hit with a multitude of emotions like loneliness, helplessness, confusion, anguish, anger, and sadness at different points in time. The uncertainty associated with MS can be immensely stressful. Having a support system, whether it be friends, family, coworkers, or therapists, can help you navigate through the toughest times. Reaching out for help from your support network is not a sign of weakness. Rather, it shows that you have a strong support system to back you up in hard times. Below are some tips to build a strong and thriving safety net:

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Building A Safety Net

Posted on August 20, 2025 by MSAA

By Monica Proctor Wilson

Hi warrior friends,

After living with MS for 18 years, one of the biggest lessons I’ve learned is the importance of building a safety net. I always encourage MS friends to: 1) Research their choice of DMT’s, 2) Find a Neurologist that specializes in MS, 3) Keep a Mental Health provider, and 4) Build a Safety Net.

Step 1- Understanding My Safety Net:
Safety net can mean different things to different people. Before I could start building my safety net, I went to the definition:

Safety net (noun): something that provides security against misfortune or difficulty.

At first, I thought I already had one. I had family and friends that loved me. After the first year, the “Let me know if you need anything” texts faded. Not because they didn’t care, but because MS is complicated—emotionally, physically, and invisibly. I realized not everyone could truly understand what I was going through. 🧡 This isn’t about blame. It’s about recognizing who I needed in my safety net.

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Establishing Safety Nets

Posted on August 15, 2025 by MSAA

By Stacie Prada

Back-up plans and safety nets ease my worries. If I know I have options and support, my stresses for the future can be put on the back burner.

Which safety nets do I have control over? Which are vulnerable and might not be reliable? How strong are my safety nets, and where are the gaps?

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Creating Your Safety Net: Living with MS

Posted on August 8, 2025 by Courtney Merker

Life with MS can be full of ups and downs. Some days you feel strong and independent – others, you may need a little extra support. That’s completely normal. No one is meant to carry everything alone – MS or not.

Having a reliable support system – a personal safety net – can make daily challenges more manageable and help you feel more grounded, emotionally and physically. Whether you’re newly diagnosed or years into your MS journey, it’s never too late to build or strengthen that circle of support.

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What Does a Safety Net Look Like?

Posted on August 6, 2025 by MSAA

By Samuel Fitch

When you think of a safety net, what comes to mind? Is it a circus act—a high-flying trapeze artist soaring through the air or someone being launched from a cannon, hoping to land softly?

The truth is, safety nets come in many forms. At their core, they are tools that provide security, comfort, and confidence.

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Soak Up the Sun

Posted on July 30, 2025 by Teena Palathanam

Living with MS comes with a unique set of challenges. Heat intolerance can cause setbacks that can lead to a lot of discomfort for those experiencing it. Hot weather can exacerbate MS symptoms and lead to potential flare-ups. As the core body temperature increases, one may notice increased fatigue, weakness, changes in vision, tremors, and more. Heat-related changes are usually temporary and could get better as the body cools down.

Below are some strategies to beat the heat and manage symptoms:

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Being Cool

Posted on July 25, 2025 by MSAA

By Stacie Prada

More than any other time of year, summer shares my not-so-secret secrets. I’m not as thin, flexible, or strong as I used to be. It’s easier to disguise and ignore in colder weather when clothing is bulkier and outdoor activities are less promising.

This time of year encourages reality checks for how I look, feel, what I’m able to do, and how things that used to be easy now require more effort. While natural aging is challenging, multiple sclerosis adds even more difficulty to living well in later years.

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Adapting, Not Withdrawing: Enjoying Summer with Multiple Sclerosis

Posted on July 21, 2025 by Claudia Chavez

While summer heat can be exhausting for anyone, individuals with multiple sclerosis (MS) often face added challenges due to heat intolerance and fatigue. Heat sensitivity, also known as Uhthoff’s Phenomenon, refers to a temporary worsening of MS symptoms caused by overheating. Fortunately, there are proactive steps we can take to support our health and well-being while still enjoying all that summer has to offer.

For those living with MS, heat intolerance and fatigue can significantly impact daily activities. Something as simple as sitting in a warm car without air conditioning or spending just a few minutes in the sun can quickly drain energy levels. But with a little planning and self-awareness, it’s possible to make the most of summer while staying safe and comfortable.

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Beating the Heat with MS: Lessons from the Walk-In Freezer

Posted on July 9, 2025 by MSAA

By Samuel Fitch

Before my multiple sclerosis (MS) diagnosis, I never understood why I always felt so warm—especially compared to others. Looking back, I realize how fortunate I was to work in my family’s restaurant. One unexpected benefit? A built-in cooling station. On particularly hot days, the walk-in freezer or refrigerator offered immediate relief when my body felt overwhelmed by the heat.

Like many of my fellow MS warriors, managing body temperature—especially in the heat—is a constant challenge. For me, warm weather isn’t just uncomfortable; it can completely derail my ability to function the next day. It’s frustrating because, here in Western New York, beautiful sunny days are few and far between. When I miss them, I feel guilty. I want to be outside enjoying them with my family—but sometimes, the risk just isn’t worth it.

So what’s my advice for managing the heat when you live with MS?

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Self-Advocacy: Challenges, Tips, Mentors and Allies

Posted on June 25, 2025 by MSAA

By 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.

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