What MS Has Taught Me

Working within the MS community has provided me with a profound perspective on life and resilience.  Each day, I witness the trials and triumphs of those living with this complex condition, and through their experiences, I have gained invaluable lessons that have reshaped my outlook on life.

The Power of Resilience: Witnessing the determination of individuals with MS has attested to the true power of resilience. Despite facing unpredictable symptoms and challenges, the strength shown by these individuals in their pursuit of a fulfilling life is nothing short of inspiring.

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Resilience Is Your Superpower

MS is debilitating and relentless, wreaking havoc on our bodies and minds. It is frequently a diagnosis that causes fear, confusion, and discomfort in so many ways. The first thing that I think of when I speak with a person with MS is the word resilience.

If there is one thing I have learned about people with MS, it is that they are resilient. They have learned to withstand difficulties and adapt to situations that many are unaware of. The courage those with MS show every day leaves me baffled. It takes strength to deal with the physical and “invisible” symptoms of MS, and educating ourselves and those around us about this disease is just as powerful. The MS journey is one of ups and downs, trial and error, and acceptance.

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The Fear

By Chernise Joseph

Since it’s the spookiest of months, let me get right to the point: MS has taught me how to be afraid. To be very, very afraid.  As big and as intimidating as that word can truly be, I don’t want it to come across as multiple sclerosis has simply scared me away from living as that isn’t the case at all–if anything it’s the exact opposite.

Multiple sclerosis is a funny thing, especially the sort I have. I can go weeks, months, even years, without any relapses, but the threat of them still lurks over my head like a storm cloud. What if I overdo it today and trigger a relapse? What if the weather is simply weather-y and I’m in relapse-land? What if, what if, what if.. That is what scares me the most about MS. The what ifs.

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What People with MS Wish Others Knew

When a health condition is invisible to others, people who do not have the condition may struggle to understand it. This is often the case with multiple sclerosis (MS).

Many MS symptoms cannot be seen. This can be incredibly tough for people living with MS. Those around them do not always understand what they are dealing with, even after they try to explain.

To find out more about the MS community’s experiences, we reached out to the MultipleSclerosis.net Facebook page. We asked, “What is one thing about MS that you wish people understood?”

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My Unspoken Strength 

The lessons that living with MS has taught me are abundant. I have lived with this disease since I was in my very early 20s. Some of the most pivotal years of a young person’s life. I had big dreams of being a sports reporter. I did seven internships throughout my college career at Penn State University. The truth was, I was just downright hungry and would do whatever it took to be able to say, “I made it.”  

My last year of college was a pretty exciting time for me. I had just finished an internship with the B1G Ten Network. The show I helped produce won an Emmy Award, and I had just landed a new gig straight out of college for an ABC affiliate in Harrisburg, PA. I was about to take on the biggest news story living in the sports and news world at that moment. Penn State was amidst a horrible scandal that rocked the nation. I was assigned to cover the courtroom news for this story. I spent eight weeks living in a trailer parked in a Walmart parking lot close to the courthouse. I was doing live shots next to CNN, Fox, ABC, and ESPN. I was on top of the world, or so I thought… 

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Ask the Expert – Pseudobulbar Affect (PBA)

Featuring Barry A. Hendin, MD 

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

Question: Both pseudobulbar affect and bipolar disorder can have emotional highs and lows. Can you discuss the differences between the two conditions?  

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The Best Laid Plans

By Suzanne Marriott

Living with MS can be challenging, but planning for an emergency while dealing with MS can be overwhelming, and sometimes “The best-laid plans of mice and men often go awry,” to loosely translate Robert Burn’s poetic admonition. That’s what happened to us when I thought I had planned for every contingency and possible emergency before we headed off on a trip from our San Francisco Bay Area home to San Diego for a little R&R.

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Ready for Takeoff!

It’s that time of the year… travel season!  Traveling is an exciting way to broaden your horizons, whether it be a day trip, visiting friends, or exploring a new city. The thought of traveling while having MS may be intimidating, but with plenty of planning and preparation, a fun-filled vacation is at your fingers tips, in spite of MS.

An MS diagnosis does not have to stop you from seeing the destination you’ve always wanted to visit. There are many ways to make traveling with MS less stressful and more accessible. Before traveling, have a conversation with your doctor and talk about any health concerns and how to plan and renew any medications you need to take with you.

If you’re traveling by plane, notify the airline ahead of time if you require a wheelchair or any specific accommodation. The airline can arrange transportation throughout the airport to your gate and can assist with expedited access through security.  

When it comes to hotel accommodations, research the hotel ahead of time to ensure they have handicap-accessible rooms and an elevator. Consider booking a room on the ground level if you have limited mobility. Depending on how your medication is stored, confirm with the hotel if the room has a refrigerator so you can store any medications that require refrigeration.  

Take time to research and plan your daily activities beforehand. You want to hit all the top sites that interest you and make the most of your trip! Write down the places you would like to visit and ensure these locations are handicap accessible or have elevator access. It’s important to incorporate rest breaks into your agenda so you do not overexert yourself and become fatigued. Don’t forget to hydrate too! Especially in warmer climates, overheating, and dehydration can be risk factors.  Pack water bottles, and cooling devices, such as a cooling vest, to prevent overheating.

So, take that vacation you’ve been dreaming of and make it a reality! Don’t let Multiple Sclerosis stop you from traveling. With planning and preparation, anything is possible. At the same time, know your limits and plan accordingly. Enjoy and HAVE FUN!

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Travel Essentials

Ahh summer-time. The (arguably) enjoyable weather brings about endless possibilities for outings, adventure, and quality time with friends and family. For many, the summer months indicate vacation and travel arrangements to sunny, tropical destinations. As appealing and worthwhile as a good getaway may be, these plans can also lead to uninterrupted thoughts about what to pack, what needs to get done, what to budget, feelings of guilt for leaving behind responsibilities, and an endless list of anticipated items. However, what many of us don’t think of packing is our well-being. Ensuring you are feeling your best self and are preparing in a way that will care for your mental health is just as essential as any other travel equipment.

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Summer Heat and Changing Goals

By Stacie Prada

Each day, week, weekend, season, and year, I like to think about what my goals are. What will I want to accomplish?  When it’s over, will I have a sense of fulfillment for the choices I made and how I spent time?

Each season or time of year has a different set of inherent challenges that aging and multiple sclerosis make more challenging. Spring and autumn consistently trigger fatigue and body malfunctioning for me. I blame the weather changes and obligation surges.

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