Acknowledging Your Safety Net

By Dr Eva Jackson

Let us take a moment and go back into time. Remember your life before multiple sclerosis. Now stop and take a big breath as you let your memories unfold. You may visualize the days of going to a theme park and riding all the rides, or running on a sandy beach, just having fun. The days before watching your steps to ensure that there were not any barriers that would create a fall hazard or looking at the handicap parking spaces at your local grocery store to ensure that you did not have far to walk.

Now smile, because if you can visualize this, just know that you are not alone. Most of us are very independent people. People who never relied on others when making plans to go places. Independent individuals who very seldom had to go to the doctor regularly or spent days researching healthcare plans because this work was often done by your jobs.

As you think about those days, I will tell you a little secret. I have not been to a Christmas parade in over 5 years. During my last parade, I experienced several falls and sustained a shoulder fracture the next year. The risk is not worth the fulfillment of watching a parade in person.

Now MS has created a need in you to find safety nets in your home, communities, and healthcare. A safety net that you may have never thought you would need. A safety net could be financial, healthcare, family, or community support.

Let’s look at different safety nets and how they may vary for you.

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What Does a Safety Net Look Like?

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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Making the Most of Summer to Improve Your Overall Health

By Dr. Eva Jackson

Summer is often marked by joy, laughter, family traditions, and road trips. Taking a moment to sit on your porch and listening to birdsong can provide an effective respite from the stresses and demands of a busy day. A simple walk around the outside of your home to get a daily dose of nature can provide someone living with multiple sclerosis a simple dose of much needed Vitamin D and improve overall health. These activities are also great for meditating and mindfulness exercises.

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Being Cool

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

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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Speaking Up Is Self Care

Speaking up. Standing up for myself. These are all things that you learn as you grow and mature in life. Advocating for my health though, piece of cake. I know my body like no one else. I understand how my body responds, reacts, and refuses. 

When I think of self-advocating for myself, I also think of speaking up not just in the medical sense, but also when something, or someone is not filling my cup. I think back on all of the instances in my younger adult life, and get angry with myself for not speaking up to say “no, my body cannot afford to go out tonight.” Or simply say something along the lines of “I’m sorry you don’t understand why I put my body and my health first, but it’s necessary for me to stay healthy.” 

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Self-Advocacy: Challenges, Tips, Mentors and Allies

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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The Power of Being Your Own Advocate 

By Samuel Fitch

The word advocate means “a person who publicly supports or recommends a particular cause or policy.” But when it comes to self-advocacy, it means something even more personal—speaking up for yourself when no one else can. 

As I sit down to write this, I find myself in a unique place. On one hand, I’m celebrating a beautiful milestone: my daughter graduated from ministry school this week. On the other hand, I feel completely worn out. We spent 24 of the 72 hours on the road just getting to and from her graduation, and the exhaustion has caught up with me. Add in the personal demands of life, a career that requires a lot of me, and countless other responsibilities, and it’s no wonder I’m feeling drained. 

But here’s what I’ve learned: it’s OK to speak up for yourself. It’s OK to set boundaries with your time. It’s OK to give yourself permission to rest. That is self-advocacy. 

And for those of us living with something like MS, self-advocacy isn’t just helpful—it’s essential. After a diagnosis, the floodgates open. Well-meaning friends and family start offering opinions, articles, and advice. But being your own advocate means having confidence in the path you’ve chosen with your medical team. Even in the early days, when things aren’t going smoothly or symptoms don’t seem to improve, you have to trust your team—and yourself. 

Being a self-advocate means standing firm in the face of uncertainty. It means honoring your own voice even when your body feels weak. It means saying, “I’m not OK right now,” and knowing that’s a powerful, healthy thing to do. 

As I look at the picture of my wife and our four kids on the wall, I’m reminded how blessed I am to have a support system. But even with that support, I’ve learned to listen to my body when it says, “Enough.” And in those moments, I have to speak up—not just for my health, but for my future. 

Because sometimes, the strongest thing you can do… is rest. 

About Sam:

Sam Fitch is a financial advisor based in Jamestown, New York, where he helps individuals and families build stronger financial futures through planning focused on cash flow, protection, and long-term goals. Before entering financial services, he spent 25 years working in his family’s restaurant business, which helped shape his strong connection to community and service.

Sam also lives with multiple sclerosis and is passionate about supporting others navigating similar challenges. Through his writing and advocacy work, he hopes to encourage people living with MS to pursue strength, resilience, and a meaningful life despite the obstacles the disease can bring. He is a husband, father of four, and active supporter of the MS community.

The Joy of Imperfection

By Stacie Prada

If I could talk to my younger self, I know she’d be surprised, excited, proud, and likely a bit skeptical to learn that I’ve genuinely found fulfillment in imperfection. 

I was a very timid and quiet child. I feared making mistakes, looking dumb, and not doing things right. I tried to avoid any possibility that I’d do something to be ridiculed or judged negatively.

I visibly shook throughout a presentation on candle-making to my fourth-grade class. It was torture to be the center of attention in a classroom. A high school presentation of a memorized poem wasn’t much better.  Neither my nine-year-old self nor my 15-year-old self would ever have imagined that someday I would frequently present with confidence to large groups. Young me would be amazed that I overcame my fear of public speaking. People who have only known me for the last 10 years would not believe I was ever that shy and fearful.

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Proud Memories

By 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.

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