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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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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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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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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Prioritizing Self-Care

By Stacie Prada

Each year I approach the holiday season with excitedly high hopes and an underlying worry for the season’s demands. I know I need to be even more attentive to my health than usual to best navigate the next couple of months. Yet most years I put commitments and other people ahead of my needs. It leads to overwhelm and exacerbates my MS fatigue.

Self-care is an individual decision and responsibility, and it’s within our control.  So, what makes it so hard? Often, it’s the abundant needs of family, friends, profession, and self-imposed expectations competing with limited time, money, and energy to meet those needs. The demands of us and by us can be more than humanly possible to meet. So where do we draw the line?

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A Guide to Self-Care During the Holiday Season

Ahh…the holiday season! With its dazzling lights and festive cheer, the holidays can often bring a whirlwind of activities and expectations. Although it’s a joyous season, it can also bring forth chaos and stress. That’s why it’s crucial to prioritize self-care and ensure a harmonious and fulfilling celebration. Here are a few strategies to help you navigate the holiday season while keeping your well-being at the forefront:

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 Self-Care: The Best Care      

With the holidays just around the corner, it is natural to feel overwhelmed and stressed. We tend to prioritize everyone else’s needs and neglect our own. For those battling MS, the daily challenges can wear you down and take a toll on you. You might feel fatigued and have no energy to indulge in any activity. That’s why self-care is so important. Without ample rest and relaxation, you will feel burnt out. There is no perfect formula for self-care, but doing things that help you rejuvenate and heal is the key. Here are some activities you can do to indulge in self-care and make your holiday season more fun and livelier:

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Embracing Wellness While Navigating the Holiday Season

The holiday season can be overwhelming. While I enjoy shopping, cooking, decorating, and spending time with loved ones, it can leave me drained and exhausted. The holiday season represents joy and celebration, but life has a way of challenging our plans and intentions. Taking care of ourselves is integral to enjoying this season to the fullest.

Holidays have a significant impact on our lives. Every year, I remind myself to be mindful of my spending. I get so caught up in gift exchanges and not-so-necessary decorations that I lose track of what is truly important. A present is lovely, but the gift of our presence and undivided attention is unmatched. Spending time with loved ones and being present in the moment is priceless. I must remind myself to put the phone down, set aside my worries for another day, and focus on being fully present. If a gift exchange is essential and you have a large family, we can always give a personalized homemade card or a small trinket that symbolizes your appreciation. Seasonal sales are great but be mindful of impulsive spending. Knowing our financial limits and respecting those boundaries is part of our well-being. It allows us to prioritize our expenses and financial goals.

Social expectations can be a source of stress during the holidays. We may feel pressured to participate in events or activities that do not align with our current emotional or physical wellness. I allow myself to leave social events early, take breaks, or excuse myself from them as needed. Your loved ones may be more understanding of your limits than you think. Share your feelings with them, and don’t hesitate to ask questions. Sometimes, it’s essential to know the food or seating options at the event, or it may be essential to know who may attend the gathering if it contributes to an unhealthy dynamic. Don’t be afraid to set boundaries and follow through with them.

For those who experience loneliness or grief during the holiday season, know that you are not alone. The absence of people or any loss in your life can be difficult this time of year. Whatever the cause of our grief is, know that it is okay to acknowledge and express it. One way to deal with these feelings is to rethink our expectations and be flexible with ourselves. These feelings are entirely valid. Seek support from friends, family, and professionals, and practice acceptance. My MSAA Community Online Forum offers a free peer-to-peer online forum for individuals with MS, their families, and their care partners to share information and their experiences with multiple sclerosis. Building connections and finding support this holiday season can be done in various ways.

Self-care has become an essential component of well-being during the holiday season. I have learned that prioritizing my needs and preferences does not have to be an added task on my to-do list. I can make small changes that have a significant impact on my health.

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It’s Not All Glitter

Bubble baths, massages, shopping. These are just a few things that initially come to mind when I think of self-care. Self-care is often glamorized, focusing on the external material aspects that constitute treating oneself. Now, don’t get me wrong, I’m a huge fan of all of these aspects, and I love a good shopping spree every now and then. But these aspects are just on the surface of what it really means to care for yourself.

Self-care isn’t always as luxurious as it sounds or looks on movie screens. Taking care of oneself requires dedication and discipline. I’ve found that self-care is uncovering the ugliest parts of yourself. Really getting to the root of who you are as a person, how you react to specific situations, and how you grow as an individual are just a few life-changing processes that I truly consider caring for yourself. But where does this process even begin? Visualizing the person you want to be and showing up as them every day, regardless of your current circumstances, is just one method. Much like the classic saying, “Fake it till you make it,” you are only as good as your mindset. By acting as if you are already where you want to be in life, the rest will surely catch up in due time.

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Steven Kaiser – November 2023 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 Steven Kaiser as the November Artist of the Month. Steven is from Greensboro, NC.

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