A Couple Takes on MS

Looking for a way to overcome your chronic illness? Fuggedaboutit! Seriously. Forget about it. Easier said than done, right? Jennifer recently reflected on this when she wrote: “I am aware of my Multiple Sclerosis every single day. The disease cannot be avoided, as it is everywhere in my life, from its treatment, symptoms, and progression. It’s easy to let disease be our focus, but it is important and valuable to distract ourselves from it too.” Join us for this episode of A Couple Takes on MS Podcast as we explore the importance of engaging in activities that distract your mind and prevent the disease from consuming your every thought. Whether it’s listening to music, reading a book, or going out for the night to watch a baseball game with our beloved Great Lakes Loons, MS is no longer front and center in our lives. And we found comfort in knowing that we aren’t the only ones who feel this way and are not letting MS control our minds. Keynote speaker and best-selling author Mike Robbins has explained that the goal of this kind of thinking is "... to choose to ‘distract’ ourselves (i.e. get out of our heads, let go of our negative worries, and take a conscious break from the day-to-day stress of life) in a truly healthy way. When our motivation is positive (we're not avoiding anything, but choosing consciously to take a break), the outcome and experience of our ‘distraction’ is more likely to be healthy and beneficial.” Let our conversation be a distraction of sorts to find ways to get it out of your head from time to time. Here are links to sites to help you continue this conversation: • 60 Healthy and Uplifting Distractions – Delaware Psychological Services article highlighting the positives to distracting ourselves   • Distracting Yourself in Healthy Ways – HuffPost essay by Mike Robbins that gets to the core of the hows and whys behind purposely distracting ourselves. ***** Remember to rate, review and subscribe to A Couple Takes on MS Podcast for two insightful perspectives on this one multifaceted disease.

Tyler Susko, Ph.D., knows a thing or two about walking a mile in the shoes of people with walking difficulties. So much so, he is making their experiences better… one step at a time. Tyler is the Chief Technology Officer and Founder of Cadense, the company that's revolutionizing the way the world thinks about adaptive footwear. We mean, that’s what happens when a person with mechanical engineering expertise and a compassionate heart pursues his passions and builds a team that combines robotic design, neurorehabilitation, and functional biomechanics. They create groundbreaking adaptive solutions like Cadense Adaptive Shoes. Join us for this episode of A Couple Takes on MS Podcast as we sit down and have an engaging conversation with Tyler about his work that is impacting so many people’s lives. Tyler, who earned his Ph.D. in Mechanical Engineering from MIT, has focused on developing mobility products for people with disabilities for over a decade. He is an active professor of teaching at UC Santa Barbara where he teaches nine courses in product and machine design. In our chat with Tyler, we step into everything from the: • Cutting-edge science behind Cadense Adaptive Shoes • New form of robotic gait therapy—the MIT Skywalker—he designed, fabricated and tested while at MIT • High school experience Tyler had that sparked his commitment to improving the quality of life for people with movement challenges • Vision he has for the future of adaptive technologies Here are links to sites to help you continue this conversation: • Cadense – Website for Cadense, where you can learn more about the shoes and their adaptive technology, reviews of the shoes, and ways that you can order them. • Shoes for Drop Foot: Help Prevent Trips/Falls with these shoes for foot drop! – YouTube video where Dr. Gretchen Hawley, physical therapist and MS-certified specialist, evaluates the impact of Cadense Adaptive Shoes on people’s waling abilities. • How Multiple Sclerosis Affects Gait and Walking – Article from the National Multiple Sclerosis Society that looks into how the disease causes challenges with walking and the strategies people can use to improve their gait and movement. ***** Remember to rate, review and subscribe to A Couple Takes on MS Podcast for two insightful perspectives on this one multifaceted disease.

Continuing our focus on Disability Pride Month, I started thinking that we all are different, but is disability just another form of different? It’s one thing for an adult to stare at me in my power wheelchair and make unintentionally insensitive comments such as, “I wish I had one of those today!” or “Do you have a driver’s license for that?” The reality is adults should know better, but such comments open the doors for a constructive conversation and teachable moments. Yet how do we talk to children about people living with disabilities? About people who, in their minds, seem “different.” The immediate reaction from their mannerly parents often is a stern, aggressively whispered phrase like, “Don’t stare! That’s not nice.” Is this the ideal way for parents to react? How should parents handle these situations with their children?   Join us for this episode as Dan and I have a thoughtful conversation with Erica Miedema about the best way to approach this subject with her almost 10-year-old son, Maximus. The three of us delve into different approaches to talking with children who are curious about people with disabilities and how to turn their questions into truly teachable moments. P.S. You may remember Maximus when he was our podcast guest who interviewed us in Episode 51: From the runway to Walk MS. :-) Here are links to sites to help you continue this conversation: • Respecting Differences: How to Talk With Your Child About Disabilities • 10 Strategies for Talking to Kids About Disabilities • People First Language ***** Remember to rate, review and subscribe to A Couple Takes on MS Podcast for two insightful perspectives on this one multifaceted disease.

Disability Pride Month is celebrated every July. Pride in disability? For real? Yes, for real. As A Couple Takes on MS, Dan and I are proud, but it is complicated. Am I proud that I no longer can walk and the whole world can see I truly am disabled because I need to use a power wheelchair for mobility? Likewise, is Dan proud that he struggles and nobody can see his invisible disabilities triggered by the limited feeling in his hands and feet?  Absolutely! But, as I said, it’s complicated. Pride is defined as a feeling of satisfaction derived from one's own achievements or the achievements of those with whom one is closely associated with. This is the beauty of the month-long celebration that offers opportunities to honor the history, achievements, experiences, and struggles of our disability community. It’s also held in July to mark, commemorate and celebrate the anniversary of the Americans with Disabilities Act, which President George H.W. Bush signed into law July 26, 1990. Join us for this episode as we share our broad-based perspectives on Disability Pride Month, including our reservations on claiming pride in our visible and invisible disabilities as well as the empowerment that comes from proudly celebrating our collective accomplishments in spite of our disabilities.   Here are links to the sites we discussed in our conversation: • Why and How to Celebrate Disability Pride Month – Article from The Arc, the largest national community-based organization advocating for and with people with intellectual and developmental disabilities. • What is Disability Pride Month? – Essay from Inclusive Employers, the UK's first and leading membership organization for employers looking to build inclusive workplaces. • Disability Pride Month Background – Information and resources from the USDA’s AgLearn to encourage engagement for this annual celebration. • Federal Aviation Administration Reauthorized with Accessible Air Travel Provisions – National Multiple Sclerosis Society news release about President Biden signing a 5-year FAA reauthorization which includes provisions to make air travel better for the disability community. The bill's passage follows a 387-26 vote in the U.S. House of Representatives and 88-4 vote in the U.S. Senate. And, yes, this bill is among the reasons why Dan and I advocate and are MS activists. It’s also the topic of an op ed piece I wrote for our local newspaper. ***** Remember to rate, review and subscribe to A Couple Takes on MS Podcast for two insightful perspectives on this one multifaceted disease.

In Episode 77, Dan (and he admits it) was struggling cognitively. But was his scatteredness because he was tired? Age? Doing too much? Living with Multiple Sclerosis? In response to these questions, we can answer potentially, maybe, possibly and perhaps. It’s hard to tell what the cause was, but MS seems to lead the pack in reasons why. It turns out that cognitive problems are a common issue of MS, affecting 40 to 60% of people at some point in their disease course. These problems can vary from person to person. According to the National Multiple Sclerosis Society, some common cognitive deficits include:  • Learn and remember information • Process incoming information • Organize, plan, problem-solve and make decisions • Focus, maintain and shift attention • Act on information and communicate it to others • Find words • Relate visual information to the space around you (accurately perceiving your environment) • Perform calculations Join us for this episode as we open up about the cognitive challenges we each have encountered and brainstorm (pun totally intended) about what the underlying reasons for our involuntary missteps in mindfulness. Here are links to the sites we discussed in our conversation: Comprehending cog fog • What is Cog Fog (Cognitive or Brain Fog) and How to Deal with This MS Symptom – Link to Healthline article that addresses the science behind this reality and tips to see your way through the fog. • Can Stimulants Help With MS Fatigue? – MyMSTeam article about using stimulants to provide energy and manage MS fatigue. And then there is this (ugh, because I AM getting older) • Many women have cognition issues during menopause – UCLA Health Q & A that provides insights and advice to a patient asking about hormone replacement therapy in dealing with menopause. So, with MS and age, how do we keep sharp?  • Tips for dealing with memory and thinking problems – Story from MS Society UK that offers simple ways and exercises to improve your memory and thinking skills. • How Does Cognitive Rehabilitation for MS Work? 4 Ways It Can Help –  Article from MyMSTeam that highlights a type of therapy that can help boost your memory, attention, and processing of information. ***** Remember to rate, review and subscribe to A Couple Takes on MS Podcast for two insightful perspectives on this one multifaceted disease.

Not every person could seamlessly tie together the concepts of Step Therapy Reform and the Crap Gap. You just need to leave it to A Couple. Because to us it makes perfect sense to connect: • A bill in the Michigan House of Representatives that will ensure people with Multiple Sclerosis can get the medications they need without detrimental delays to • The stretch between disease-modifying therapy (DMT) infusions when MS symptoms seemingly feel worse. Seriously. We originally thought we were just run down from doing so much over the last several weeks — from traveling to Columbus, Ohio, for a Bruce Springsteen concert to participating in a Walk MS event in Frankenmuth, Dan hurting his back while transferring Jennifer, and everything else we do to make it through each day. Then we realized we each were within several weeks of our scheduled DMT infusion. Could our exhaustion be a direct result of this supposed Crap Gap? Speaking of DMT infusions and the Crap Gap, we capped off our busy few weeks with the virtual MS State Action Day for the National Multiple Sclerosis Society where we addressed legislation for Step Therapy Reform in the State of Michigan (Hint: MS DMTs often are the targets for step therapy). Join us for this conversation where we tackle these topics and offer insights into how our listeners who live in Michigan can get involved in advocating for Step Therapy Reform. Here are links to the sites we discussed in our conversation: • Support Step Therapy Reform – Link for Michigan residents to contact your State Representative urging them to support HB 5339 so individuals living with MS can have access to their doctor-prescribed medications in a timely manner. • What Is the ‘Crap Gap’ Between MS Infusions? – MyMSTeam article describing this experience when MS symptoms feel worse in weeks leading up to a DMT infusion. • Talking about the Crap Gap – AnCan Multiple Sclerosis Virtual Support Group, which Jennifer serves as a moderator, recording where members discuss the Crap Gap (among several other engaging topics). • How Springsteen softened this Wolverine to embrace the Buckeye State – Get insights into why Jennifer is emotionally conflicted after what likely is the Bruce Springsteen concert she’s ever seen… it just happened to be in Ohio (IYKYK). • Hoyer Lift – Information about the medical equipment we used to transfer Jennifer into and out of bed while Dan recovered from injuring his back. • Stand assist lift devices – Information about the medical equipment we used to transfer Jennifer in the restroom while Dan recovered from injuring his back. • Frankenmuth Walk MS – Learn more about this event and how you can donate to support our team – Team MonsterS. ***** Remember to rate, review and subscribe to A Couple Takes on MS Podcast for two insightful perspectives on this one multifaceted disease.

So often it seems the more you do, the harder it is to keep your head above water. You tell yourself you just need to get through this task. This morning. This day. Phrases like, “It can wait until tomorrow,” “I don’t need to ask for help,” and “I got this,” fire up your sense of determination. But all they’re really doing is forcing you to burn your candle at both ends, and this leads to, you guessed it, burnout. We are learning that a key to remedying this kind of overwhelmingness isn’t so much about asking others for help, it’s about connecting with them (and yourself) to hold you accountable. Accountability is all about taking responsibility for your actions. And responsibility isn’t something you have to handle all by yourself. Join us for this episode of A Couple Takes on MS Podcast where we open up about the challenges we face when we don't involve someone or something to hold us accountable. This includes everything from a sleep study that is pushing us to actually get to bed before 1 a.m. or Stella, the 1-year-old Olde English bulldog who made us realize that we aren’t the prime candidates for being puppy parents... right now. Here are links to the sites we discussed in our accountability conversation: • Coach, Accountability Buddy, or Friend – Everyday Health Blog essay by iconic MS author Trevis Gleason • Ask an MS Expert: How MS Can Affect Your Sleep – National MS Society conversation between RealTalk MS host Jon Strum and University of Kansas Medical Center’s Sleep, Health & Wellness Lab Director Catherine (Katie) Siengsukon • Music and MS: Going beyond the meme – Dan’s MS Focus Exclusive Content essay that digs into how music (including Bruce Springsteen, of course!) has helped him cope with MS realities • The benefits of living with a pet – Above MS article that highlights the pros of owning a pet ***** Remember to rate, review and subscribe to A Couple Takes on MS Podcast for two insightful perspectives on this one multifaceted disease.

Since her MS diagnosis in September 2019, Brittany Quiroz—also known as a “A Hot MS”— has been a powerful voice in the Multiple Sclerosis community. Brittany is an author, speaker, MS activist and a talented singer/songwriter. Whew! Did we say she’s a powerful voice? She figuratively AND literally is! Her recently released single “Never Have My Soul” is a powerful, empowering and inspirational masterpiece that encapsulates the triumph every person living with MS strives for each day. We are thrilled to share a snippet of her single to kick off our engaging and point-blank honest conversation with Brittany. Join us as we get a glimpse into the matter-of-fact and motivational mind of A Hot MS. Hear what led to her diagnosis, what keeps her going and why she encourages others to, “Celebrate Your Mess!” Here are links to the sites we discuss in our chat with Brittany: • “Never Have My Soul” – Follow this link to purchase and download Brittany’s single, which she is generously donating all of its proceeds back to the National Multiple Sclerosis Society. • A Hot MS – Catch up with Brittany through her website. • All The Odds ­– Catch this podcast to listen in on Brittany’s conversations with others who have risen above the challenges they’re facing. ***** Remember to rate, review and subscribe to A Couple Takes on MS Podcast for two insightful perspectives on this one multifaceted disease.

You say flare. I say exacerbation. Or is it relapse? Whatever you call it, MS is progressing.   All it took was the recent Healthline article Is an MS Flare-Up the Same as a Relapse? to make us remember that contrary to wearing orange and observing March as MS Awareness Month, increasing understanding of this chronic progressive disease is a year-round venture. After all, we each have had Multiple Sclerosis for 25+ years, and we still had questions about what exactly IS the difference between an MS flare-up, attack, exacerbation and relapse. You say “tow-MAY-tow” I say “tow-MAH-tow,” right? Not necessarily. Join us as we figuratively pick our brains to make sense of what should be a seemingly simple concept. And yes, it is a big deal. This – whatever you call it — is at the core of monitoring and measuring the progression of what actually is a very complex disease. And in breaking this down, we expand our MS awareness conversation to include discussions about: • The advice we each share with someone who is newly diagnosed with MS • What we wish someone living with MS would have told us about the disease when we were first diagnosed • The importance of staying informed and being flexible in dealing with MS • How to keep conversations about MS going throughout the other 11 months of the year And remember to rate, review and subscribe to A Couple Takes on MS Podcast for two insightful perspectives on this one multifaceted disease.

Always believe in the power of your voice and your story to influence change. Whether it’s at the local, state or national level, your experiences are valuable in making things better for you and many others dealing with the same circumstances and situations. We were honored that we had the opportunity to attend the National MS Society Public Policy Conference in Washington, D.C., the first week of March (officially MS Awareness Month!) and join nearly 200 other MS activists on Capitol Hill March 6 to advocate for MS-related legislative issues. We are grateful for the members of Congress and the legislative aides for our U.S. Senators from Michigan for meeting with us and other state MS Activists to discuss Congressional action to: • Prioritize the extension and improvement of access to telehealth by cosponsoring and supporting the CONNECT for Health Act • Prioritize $20 million for the MS Research Program in FY25 Join us for this episode we break down these two issues, why they are so important for people living with MS, and why your voice is needed in the MS community. Advocacy is always empowering. We all have a story to share. And nobody knows your story better than you. Take some time to become an MS activist today! And remember to rate, review and subscribe to A Couple Takes on MS Podcast for two insightful perspectives on this one multifaceted disease.

We’ve never met Sarah Kirwan and Carl Deriso as a married couple, let alone had a shared conversation with the two of them. But less than two minutes into our chat with the Arizona couple, it was like we were catching up and laughing with longtime friends. They had us at hello. And we, as A Couple Takes On MS, think they’ll have you there too. Consider these facts about this Sarah and Carl: • Sarah was diagnosed with Multiple Sclerosis in 2011 • Carl was diagnosed with Multiple Sclerosis in 1996 • They met at an MS support group in May 2016 and started dating shortly after • They got married in August 2020 Yes, they have similarities to what we’ve experienced with love, marriage and MS, but they have an empowering story all their own that we are so thrilled to share with you in this episode. Join us as we tap into their dynamic relationship and what keeps them moving forward as a married couple living with MS. They provide their engaging insights into everything from who pursued who to kick off their relationship, where they turn for support, the importance of pets, what moments they treasure most, and how they keep going in spite of MS. And when you’re through listening to this episode, check out this Yahoo Life story – ‘I was just kind of done with dating’: how one woman found unexpected love while facing a chronic illness – to learn more about Sarah and Carl.

This episode released on Valentine’s Day so of course it embraces a theme related to maintaining loving relationships when you or your significant other are living with Multiple Sclerosis. Just think about it: all committed relationships present their share of challenges. Throw a chronic progressive disease into the mix, and this love connection suddenly presents a different sort of sclerotic dynamic. This disease literally has a lot of nerve tangling up these loving relationships! Join us as we – A Couple Takes on MS – offer our perspectives and tips into what it takes to build and strengthen a caring and committed relationship when MS (or any other challenge for that matter) tries to take the focus off the love you’re looking for or the love you and your partner share. We talk about the places people have found love (reminder: we met at a National Multiple Sclerosis Society event) and delve into the elements that help lead to successful relationships, including honesty, empathy, gratitude, and, yes, love. Lots and lots of love. Here are some links we reference that offer more insights into dating and loving relationships in spite of MS : • Living Well with MS/Relationships – National MS Society article • Young, Single, and Diagnosed With MS: Your Dating Questions, Answered – Everyday Health article • 10 Dos and Don’ts for Dating With Multiple Sclerosis – Marriage.com article • Intimacy and MS: Make It Your Own – MS Focus essay

We all know Multiple Sclerosis is a relentless, unpredictable, frustrating disease. It can make living with it seem impossible, but we can regain some control in how we manage our MS. Shortly after she was diagnosed more than 26 years ago, Jennifer heard a doctor speak who offered an analogy that inspired her then and still does to this day. She shared it with me early in our dating relationship that started in 2002, and it continues to motivate me. Join us for this episode as we break down this thought-provoking analogy of where MS fits in the hypothetical car you’re driving with the disease. Is it riding shotgun, sitting in the back seat, or is it buried under a bunch of blankets in the trunk? Or, do you feel it’s pushed you out of the driver’s seat and has taken total control over where you’re going? Listen to where we each believe MS is on our respective imaginary vehicles.  We dare say you’ll be surprised over which of us feels less in control. Here are some links we reference for ways to help you stay in command of your MS journey: • Let’s Find Better Sleep – MS Focus article about the value of sleep in when living with MS. • Diet, Exercise & Healthy Behaviors – A National MS Society article about elements and practices to better manage your disease. • MS Medications – Overview from the NMSS of the disease-modifying therapies available to lessen the frequency and severity of MS exacerbations and other medications to manage MS symptoms.

When people ask who in the MS community inspires us, Jenn Powell is always among the top names on our list. For real. Seriously. Jenn is for real. She is living with Secondary Progressive MS and truly speaks our language: always honest about the harsh realities of this disease, yet gracious and eternally optimistic in looking for hope and brighter tomorrow. We are honored that Jenn took the time to chat with us and share her insights into everything from how she keeps such a sense of optimism in the face of MS to what is the best advice she received following her MS diagnosis and who she turns to for inspiration. But here’s the thing: Jenn is so much more than a person who is living with MS. Here’s how, according to her professional bio: Jenn Powell is the BioNews brand marketing manager. She lives in Southern California where she enjoys volunteering for animal rescue and spending time with her husband and golden retrievers. In her seven years with BioNews, Jenn has created content for and collaborated with multiple divisions of BioNews, including BioNews Insights and BioNews Clinical. Jenn is driven to elevate the needs of those in the rare disease communities. She has done so through her column, reading of news briefings, and hosting the recently launched MS News Podcast. Her patient perspective complements her passion and industry acumen for cultivating and engaging communities both within and outside of BioNews. Pretty impressive, right? What makes this episode even more special is that Jenn took the time at the end of this episode to read one of her Silver Linings columns for our podcast feature, MS in Their Voices. Here are the links we reference for you to follow up on to learn more about our friend Jenn Powell: • 7 Questions with A Couple featuring Jenn Powell – Exclusive Q & A series from our blog that includes quick conversations with a variety of MS experts and influencers. • BioNews – The home page for the company where she serves as the Brand and Marketing Manager. • Silver Linings ­– The column Jenn writes for Multiple Sclerosis News Today, a subsidiary of BioNews. • Multiple Sclerosis Podcast – The Multiple Sclerosis News Today podcast she hosts.

It’s one thing to not be included in social activities, but the perceived intention shifts for people who are living with visible or invisible disabilities. Questions like, “How much did my disability play into me being excluded?” or “Do my friends really not like having me around?” quickly create a sense of doubt and self-worth. We know. We’ve both been there. Join us for this episode of “A Couple Takes on MS,” as we delve into the crucial topic of inclusion and shine a spotlight on the significance of embracing individuals with both visible and invisible disabilities. Throughout the episode, we explore the challenges we’ve faced and get real about the often-overlooked struggles we’ve dealt with in living with disabilities that are seen and unseen. Here are the links to the articles we discussed: • Sure, I Have MS. But What About Me? – A deeply personal essay by Jennifer about feeling left out potentially because of her wheelchair that appeared on multiplesclereosis.net. • Inclusive retail: Target sees me and my disability – Jennifer’s essay about the Santa in a wheelchair and why inclusion and representation of people with disabilities always matters. • Why Is Inclusion Important in Multiple Sclerosis? ­– Informative essay by Annette Okai, MD, from MS Focus Magazine

Take a moment this holiday season to stop and breathe. Listen to the laughter. The songs. This silence. The stories. A regular segment for our A Couple Takes on MS podcast is “MS in Their Voices.” This segment features the writing of MS authors who will read to you the powerful words of their personal essays, poetry and prose. In this episode, we have compiled a collection of these featured authors who shared their writings in their voices with our listeners and us in past episodes: • Tamara Sellman • Tyler Campbell • Julie Stamm • Dan Digmann As Jennifer said, “Grab a cup of hot cocoa (of your holiday drink of choice), pull up a chair, and settle in for some inspiring stories from these authors who are living with MS.” Here are the links to the episodes where these segments originally posted: Episode 41 – MS in Their Voices (Tamara Sellman) Her book, INTENTION TREMOR is available wherever books are sold. For information or to order a signed copy, visit www.intentiontremorbook.com. Episode 46 – Taking on real-life MS with Tyler Campbell To learn more about and order Tyler’s bestselling book, visit The Ball Came Out: Life From The Other Side Of The Field. Episode 54 – Taking on inclusion & MS with Julie Stamm To learn more about and order Julie[‘s book, visit Some Days: A tale of love, ice cream, and my mom’s chronic illness. Episode 65 – MS & why you should never stop learning Hear Dan read his Vocation and Purposeful Action paper from his graduate leadership program, where he explains the reason why he does what he does and what he believes is his true vocation in life.

More than 50 million people across the United States live with the primary responsibility of caring for a loved one, such as a spouse. A parent. A child. A sibling. A close relative. A friend. They are the family caregivers who offer their selfless support for everything from managing and administering medications to assisting with the most basic tasks of daily living.  November is National Family Caregivers Month in the U.S., which calls attention to family caregivers and the important role they play in the lives of those they care for.  In this episode of A Couple Takes on MS podcast, we celebrate National Family Caregivers Month and open up about the challenges and stresses we face while serving as each other’s primary caregiver. Sure, we know how much the quality of our lives are improved by having a spouse who understands what it’s like to have MS, but being a caregiver for the other is tough and can be quite stressful. Yes, it is rewarding too, but we know how important preventing caregiver burnout is. Here are the links to the articles and resources we discussed: • iConquerMS Caregivers – The newly launched caregiver website developed by the Accelerated Cure Project and iConquerMS to provide information, support and community. • National Family Caregiver Summit – Stream sessions from this first-ever two-day online event presented by caregiving.com. Be sure to check out the Male Caregiver session where Dan served as one of four panelis • Caregiver Burnout – Cleveland Clinic webpage that delves into the causes and symptoms of caregiver burnout and ways to treat and prevent it. • 14 Life-Changing Tips to Relieve Caregiving Stress – Article from caringbridge.org

Imagine if you stopped learning after you graduated from high school. Or, how about after college? Think of everything you would have missed. See what we did there? We just made you think. Learning is so important, and it never stops. It becomes even more vital after you are diagnosed with having a chronic illness like Multiple Sclerosis. Join us for this episode of A Couple Takes on MS Podcast as we explore the all-around benefits that continued learning has on you and your life. After all, education can lead to instilling positive health beliefs, knowledge and lifestyle choices. Developing better skills and self-advocacy. Rediscovering yourself (maybe you forgot you after your MS diagnosis?). Plus, learning can enhance your quality of life, reduce stress (like learning a new hobby), reduce boredom, empower you and increase your confidence. Knowledge is power, and learning more also could set a good example for others (such as Dan going back at school inspired Jennifer to pursue an online art class). Be sure to catch the “MS in Their Voices” segment where Jennifer convinced Dan to read his Vocation and Purposeful Action paper from his graduate leadership program, where he explains the reason why he does what he does and what he believes is his true vocation in life. Here are the links to the articles, app, and book we discussed: • Seven reasons why continuous learning is important – Article from Education Executive • DailyArt – The app that give Jennifer her morning art history lesson. • Multiple Sclerosis and Neuroplasticity – Informative essay by Devin Garlit from MultipleSclerosis.net • My 5 ways to figuratively master your MS – Dan’s recent essay of Exclusive Content for MS Focus Magazine • Let Your Life Speak: Listening for the Voice of Vocation – One of the books from Dan’s graduate class.

One of our regular listeners sent us what seemingly was a simple question: “What keeps you motivated in living with Multiple Sclerosis?” Simple, right? Not necessarily. While it wasn’t necessarily a complex question to answer, it was, shall we say, “Multifaceted.” Join us for this episode of A Couple Takes on MS Podcast as we unearth some of the elements we turn to daily that give us the encouragement we need to: • Get out of bed in the morning • Move forward throughout the day • Go to bed each night feeling like we’ve either made a difference or like we need to give ourselves grace and know we will do better tomorrow Here are the links to the articles, book and online support group we discussed: • Feeling Motivated, When Your MS Isn’t! • Do It Anyway! • AnCan Online MS Support Group

The annual economic burden for the nearly 1 million people living with Multiple Sclerosis in the U.S. is, wait for it … $85.4 billion. That’s billion. With a “b.” The $85.4 billion, according to a report from the National Multiple Sclerosis Society, is the total cost to all of society, which includes people living with MS; employers; health insurers; and federal, state and local government. Join us for this episode of A Couple Takes on MS Podcast as we bring awareness to the high-cost realities of what it takes to live with MS and a disability. The reality is that there is nothing cheap about living with MS. Whether it’s having to pay for a hotel room while visiting friends and family because their homes aren’t handicapped accessible, covering costs for purchasing and maintaining a power wheelchair and accessible van, or all the added supplements and heath care products, life with MS is expensive. And we haven’t even mentioned the astronomical costs for disease-modifying therapies. How astronomical? As of February 2022, the median annual price of the brand MS DMTs is close to $94,000. Six of the MS DMTs, all on market since 2009 or earlier, have increased in price more than 200% and nine DMTs are now priced at over $100,000. The sad thing is that the aforementioned figures are from studies released last year, so Lord knows how much annual increases and inflation have ballooned the costs related to having MS. And, as we note in our podcast, we aren’t talking about this to complain or go on a rant; rather, it’s to increase awareness about the seemingly unfair financial facts of life with MS that so many of the nearly 1 million people in the U.S. living with the disease are just expected to deal with and accept. Here are the links to the articles we discussed: • Cost of Multiple Sclerosis • The Economic Burden of Multiple Sclerosis in the United States