Seeking Hope

By: Stacie Prada

Finding my new normal was my initial goal when I was diagnosed with multiple sclerosis. I didn’t know what I’d need to know to live well with MS, but I held faith that I would learn what I could when I was ready. My hope was to live as well as possible with MS. Both faith and hope are deeply reliant on me to do what I can. 

The fact is I’ve had periods of holding it together, phases hoping to come out of a lot of MS symptoms, and moments where I feel like I’m rocking this life and doing fabulously.

Early in my diagnosis, I sought out every resource I could find. I read all the books related to MS in the local library, I joined the local MS Self-Help group, and I followed my neurologist’s advice. I monitored my symptoms and tried to make sense of a confusing and inconsistent illness. I searched the internet to learn all I could about MS and what helps. My health was a project to solve, and I treated it like a second full-time job. The urgency to figure out what could help was stressful, but I think it was a necessary phase of adjusting to life with a chronic illness. All of these efforts helped me become more hopeful.

Scientific studies conclude those of us living with chronic illness have a better quality of life when we have hope. When we’re optimistic, we believe our efforts can make a difference. Having hope helps combat stress and anxiety.

When lacking hope or feeling pessimistic, we’re less likely to think our efforts matter. Either way, what we believe matters for our mental and physical health when dealing with adversity.  

We can’t fully control or count on a constant level of hope. Accepting our highs and lows as normal can help ease some of the stress of living with MS. Monitoring our mood and stress level can help us notice when we’re feeling less hopeful. What we need in those times differs for each of us, and they vary depending on what’s challenging us at that moment.

What do I need, and what might help? Sometimes I need to research the symptoms that are challenging me, and others I need to talk to someone who will listen. Some moments benefit from taking a breath, stretching, and looking inward. Other moments are best served by looking outward and thinking about something other than myself. Each moment’s feeling is unique, and each needs its own plan of action. My not-so-new normal is only consistent for seeking hope and accepting the path is always changing.

*Stacie Prada was diagnosed with RRMS in 2008 just shy of 38 years old.  Her blog, “Keep Doing What You’re Doing” is a compilation of inspiration, exploration, and practical tips for living with Multiple Sclerosis while living a full, productive, and healthy life with a positive perspective. It includes musings on things that help her adapt, cope and enjoy in this adventure on earth. Please visit her at http://stacieprada.blogspot.com/

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Motherhood and MS

We all know a mother or mother-like figure in our life who demonstrates selflessness, resilience, and strength in all that they do. Mothers with multiple sclerosis especially, take on the unique challenge of navigating symptoms and flare ups, while also balancing being a mom.

Overcoming challenges as a mother with multiple sclerosis can be demanding, but also rewarding. It can become a balancing act between self-care and caring for your family, leaning on support, and being adaptable to accommodate flares and symptoms.

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Navigating Life with MS without My Mother

By: Stacie Prada

This is my truth. If my mom hadn’t died when she did, she would have been a comfort and helper when I was diagnosed with multiple sclerosis and felt so alone. She would have made a difference in millions of ways, but I’ll focus here on how being motherless relates to my MS. 

I was diagnosed 15 years after my mom died.  In hindsight, I’m certain that following her death I had an MS exacerbation characterized by extreme fatigue, depression, and surprising clumsiness. At the age of 23, I was executrix for her estate. It was a monumental responsibility organizing her funeral, managing her finances and legal affairs, selling her home, and dealing with everything a life suddenly cut short entails. 

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Conectando con la naturaleza para el bienestar mental

La naturaleza es una parte muy importante de nuestro mundo. Aunque no me agradan los insectos que la habitan, aprecio su belleza y todos los recursos que nos proporciona. ¿Sabía que la naturaleza puede ayudarnos a controlar el estrés? Esto se conoce con diversos nombres, como terapia de la naturaleza, ecoterapia, o terapia verde. Independientemente del nombre, se refiere a los beneficios terapéuticos de pasar tiempo en la naturaleza.

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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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Judgment Can Help or Hinder

By Stacie Prada

What do I wish others knew about living with Multiple Sclerosis? I wish they knew their judgment could help or hinder us.

Everyone judges, and it’s not a bad thing. We all have opinions, hopes, fears, disappointments, appreciation, admiration, frustration, and expectations. They come through in our interactions even when trying to hide them. It’s not about the judgment, it’s about how it’s expressed. Whether that judgment comes through as cheerleading or criticizing matters.  

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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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Making the Most Is Not Doing the Most

The holidays can be a busy and stressful time for most of us. The list includes holiday parties, hosting guests, shopping, gift wrapping, traveling, and cooking. Especially when you have young children, you’re expected to deliver the magic of Christmas with every chance you get. Through my journey living with MS, since I was a young adult, I have learned that doing the most during the holidays is not making the most of the holidays. I have since limited my holiday commitments and traveling to a minimum. This does not mean that I don’t enjoy and love the season; instead, it means I make it manageable, which makes it all the more enjoyable for me.  

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Always Evolving

By Kate

Sure, I can tell you about how frustrating it is to be too fatigued to play with my kids outside or what it’s like to worry that the drink in my right hand might end up on the floor (or on me). I can tell you about my fears about being able to be the mother my kids deserve and what it feels like to forget key information when I’m speaking to someone at work. It’s a lot and it’s constant, but that’s not what I want to focus on. I’ve been diagnosed with MS for six years and since then I’ve had two children, moved out of state and back, gone through a divorce, and started a new job. My world has changed and so have I. There are so many things I’ve read about the dark sides of MS and I certainly don’t want to downplay those aspects in the least, but I do want to also draw attention to something I hadn’t expected upon diagnosis – I woke up.

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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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