A Couple Takes on MS

To complement our recent blog post – From love at first sight to a focus on in-home care – about our love story getting featured by the IMPART Alliance at Michigan State University, here is an encore post of one of our top-performing podcasts that gives insights into our lives as each other's caregiver. Enjoy! There's more to our relationship than 18 years of marriage and each of us living with Multiple Sclerosis. We also are in a caregiving relationship. Jennifer is my primary caregiver, and I am hers. We were so humbled and honored that Healthline Media connected with us and included our caregiving story in its three-part Taking Care video series. Join us for this episode of A Couple Takes on MS Podcast as we discuss what the experience was like to have film crews from NYC and Detroit arrive at our home in Michigan to capture our day-to-day realities and explore why caregiving is the story that must be told. All in all, being a family caregiver is a double-edged sword that can be both a blessing and a burden, and we went into our marriage knowing what we were facing. Or did we? There is so much to being a caregiver. And we are not alone in this experience. According to estimates from the National Alliance for Caregiving, during the past year, 65.7 million Americans (or 29% of the adult U.S. adult population involving 31% of all U.S. households) served as family caregivers for an ill or disabled relative. Reports also indicated that 24.4% of adults aged 45 to 64 years are caregivers compared to 18.8% of adults aged 65 years and older. One in four (25.4%) women are caregivers compared to one in five (18.9%) men. Here are the links we referenced for you to follow up on: • Healthline presents Taking Care – Healthline's three-part series that includes stories about caregiving relationships within the Alzheimer's, breast cancer and the MS (that's us!) communities. • caregiving.com – Comprehensive online caregiving resource for which Dan serves as a Caregiving Champion. • 14 resources for family caregivers to make managing it all less stressful – Insightful article posted on care.com.

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

The first day of Fall is Saturday, September 23, 2023. Oh, Fall. Dan and I both love this season. The cooler temperatures, the plethora of football games, the vibrant colors of changing leaves, and the comfort of a cozy sweater on a crisp day. Sounds so lovely, doesn't it? It is. But Fall also has a few less-than-ideal aspects. Join us for this episode as we discuss the impact seasonal changes have on MS symptoms and what can be done to prepare for or thwart any adverse effects. One of the biggest challenges Dan has to overcome is ragweed. That allergen and its pollen is everywhere, as it is at its prime from August to October. And while the temperatures are cooler, the reality is that cold follows cool. And cold brings ice and snow. Certainly no favorite of a wheelchair user or anyone who struggles with balance or gait issues. Our MS diagnosis stories both also start in the Fall. Ironic isn't it? Yet we both still love Fall, hmm… Here are the links to the articles we discussed: • MS in the Fall and Winter: 5 Ways to Stay Well • How Cold Temperatures Affect MS Symptoms • Five ways to embrace the change of seasons with MS

Sometimes what other people are seeing seem so obvious to them. “How could you not see it?” they ask. Maybe you could see it but just not very clearly. You don't want to face the truth that your vision is getting worse either because of an MS-related symptom or because you aren't as young as you used to be. Yes, this is Jennifer's reality. Funny how it took a recent minor league baseball game to bring her vision issue into focus. Yes, that pun was intended 😉 Join us as we look into (there's that pun again) MS and vision issues including optic neuritis, nystagmus and double vision, as well as how Jennifer's eyes led to her eventual MS diagnosis. Here are the links to the age-related vision changes story and the National MS Society eye problems article we discussed.  One final progress note — Jennifer's ophthalmologist visit is scheduled for October 18.

There's more to our relationship than 18 years of marriage and each of us living with Multiple Sclerosis. We also are in a caregiving relationship. Jennifer is my primary caregiver, and I am hers. We were so humbled and honored that Healthline Media connected with us and included our caregiving story in its three-part Taking Care video series. Join us for this episode of A Couple Takes on MS Podcast as we discuss what the experience was like to have film crews from NYC and Detroit arrive at our home in Michigan to capture our day-to-day realities and explore why caregiving is the story that must be told. All in all, being a family caregiver is a double-edged sword that can be both a blessing and a burden, and we went into our marriage knowing what we were facing. Or did we? There is so much to being a caregiver. And we are not alone in this experience. According to estimates from the National Alliance for Caregiving, during the past year, 65.7 million Americans (or 29% of the adult U.S. adult population involving 31% of all U.S. households) served as family caregivers for an ill or disabled relative. Reports also indicated that 24.4% of adults aged 45 to 64 years are caregivers compared to 18.8% of adults aged 65 years and older. One in four (25.4%) women are caregivers compared to one in five (18.9%) men. Here are the links we referenced for you to follow up on: • Healthline presents Taking Care – Healthline's three-part series that includes stories about caregiving relationships within the Alzheimer's, breast cancer and the MS (that's us!) communities. • caregiving.com – Comprehensive online caregiving resource for which Dan serves as a Caregiving Champion. • 14 resources for family caregivers to make managing it all less stressful – Insightful article posted on care.com.

Do you approach life's challenges from the glass is half-full or the glass is half-empty perspective? Or, are you like Jennifer's friend Nora and think, “This isn't the drink I ordered.” None of us really have a choice in the challenges we face, but we all can choose how we perceive and respond to them. Call it optimism vs. pessimism. Positive vs. negative. Hopeful vs. helpless. As we looked into launching our blog nearly 14 years ago, legendary MS blogger Michael Gerber (and our friend who passed away in 2019) taught us a priceless lesson about how to maintain an open outlook in life through the three words he used to name his blog: Perspective Is Everything. Yes, perspective IS everything, especially when you are living with a chronic illness like MS. Join us for this episode of A Couple Takes on MS Podcast where we discuss (note we said “discuss” and not “debate”) what it takes for each of us to stay positive in living with this disease while also granting ourselves the grace to get angry, sad and overwhelmed. Here are the links we reference for you to follow up on: • Talk of Toxic Positivity Was Toxic to Our Positivity – Our Multiplescerosis.net essay addressing our fear that our optimism was offending others who also are living with MS. • Picture this: My inside look into MS, Botox and bladder control – Jennifer's photo essay chronicling her journey to receive treatment for an MS symptom that frustrates even the most positive of people. • Wartburg College – The institution where Dan earned his bachelor's degree in communication arts in 1995 and will pursue his master's degree in leadership beginning this fall.

If a bill goes before Congress and you never told members how their actions will impact you, how confident are you that they will vote in your favor? As two people living with Multiple Sclerosis, this isn't a chance we're willing to take. This is why we continue to advocate for ourselves – plus the nearly 1 million other Americans who have MS – and the reason we encourage other people (like you!) to get involved. There is no better time to connect with your U.S. Senators and U.S. Representatives than when they are back in their home districts during August recess. And through the National Multiple Sclerosis Society's advocacy efforts, we have two issues – one relating to accessible air travel and one to reform access to prescription drugs – to bring to their attention. Join us for this episode of A Couple Takes on MS Podcast as we delve into the details of these issues, stress the importance of MS activism, and demonstrate how easy it is for you to get involved as an MS activist. Action items we will take to our legislators after we schedule meetings with them or their in-district legislative aides are to: Address barriers to air travel accessibility by including provisions in the 2023 FAA Reauthorization that address access standards and the DOT's complaints process for people with disabilities. Pass comprehensive pharmacy benefit manager reform this year that improves access to treatments that people need. To help get you fired up about advocacy, we open the episode reading an excerpt from Jennifer's Op Ed piece, Why Congress must pick up where the ADA got grounded with airline accessibility, that appeared in the Morning Sun newspaper. Here are the links we reference for you to follow up on: • Jennifer's Op Ed: Airline accessibility is an equal rights issue – Read the full text of Jennifer's Op Ed essay. • Barriers to air travel accessibility fact sheet – Details about the importance of addressing this issue. • Pharmacy Benefit Manager informational fact sheet – Background about why this legislation is needed • Become an MS activist – Get specifics on how you can get involves with the National MS Society as an MS activist

It's challenging enough living with Multiple Sclerosis when you are settled into the comforts of your home, but the stresses compound when you venture out on an overnight trip. Gone is your strategically crafted accessible environment and you find yourself in the middle of MS adaptability uncertainties. As in: Where is the next handicap-accessible restroom on the road? Is the hotel room truly barrier-free? Are there steps to enter the restaurant where we are meeting our friends for dinner? Will I have access to a roll-in shower? Is the hotel bed tall enough to make safe transfers? Yes, the list goes on and on; all to ensure you get the most out of your much-anticipated adventure. Join us for this episode as we use our recent road trips to a friend's wedding in southern Indiana and to visit family back in Iowa to highlight the tips, tricks and hacks we've learned over our past 22 years together to make traveling with MS a manageable and enjoyable endeavor. Learn about everything that ranges from: • What is our best pre-trip evening meal • Why is it isn't enough to request a handicapped-accessible hotel room • How you can instantly turn a standard interstate rest area restroom into a private family restroom • Road tripping with an incessant supply of ice-cold bottled water • Giving yourself permission to unapologetically oversleep and overpack Take 32 minutes to learn about these tips and more that will help you maximize the next time you travel with MS. And be sure to share your tips and hacks with us and our listeners! Submit it to acoupletakesonms@gmail.com, and we will add it to the our discussion in a future episode of A Couple Takes on MS Podcast.

A listener recently submitted a question to us through acoupletakesonms@gmail.com wondering, “How does someone just diagnosed with MS (or even someone who has lived with MS for some time) find the courage to ask for help?” What an incredibly insightful and always timely question, Dear Listener! We've struggled with summoning such courage countless times since we each were diagnosed with MS well over two decades ago. Yes, it gets easier to ask for the help we need, but it still poses its challenges from time to time. Join us in this poignantly personal conversation about the struggles we've encountered in coming to terms with having to reaching out to others for assistance. You know, those moments when the disease stands in your way of accomplishing even the once simplest of tasks. This includes everything from Jennifer requesting help to feed herself to Dan asking a coworker to button the top button of his dress shirt. Asking for help when ya got MS? It doesn't seem easy … at first. But it isn't as hard as so many of us living with MS fear it actually is. Listen as we share what has helped us to overcome our fears in asking for help, and we share our top tips to make it easier for you to find the courage to ask for the assistance you need. We are grateful for our loyal listener for submitting this question that was such a great conversation starter! And so we ask the rest of you out there in Listener Land: What MS-related questions do you have for us to take up in a future episode? Submit it to acoupletakesonms@gmail.com, and we will follow up with you when we plan to feature it on A Couple Takes on MS Podcast.

Heat is akin to kryptonite when it comes to many people who are living with Multiple Sclerosis. In fact, studies have shown that this “many” accounts for 80% of us all, including the two of us. Summer officially launches on June 20, and with this season of fun and sun comes heat waves and temperature spikes that challenge many in the MS community to keep their cool. Join us in this episode as we lead off with the heat-induced moment that prompted Jennifer to get “snippy” with Dan (which rarely ever happens!) and then open up the bag of tricks we use to tame the heat in the dogdays of summer. Here are some heat-related links for you to follow up on: • MS and Heat: What Heat Sensitivity Feels Like and How To Manage It ­– MyMSTeams article highlighting what you need to know to avoid heat sensitivity complications • 7 Suggestions for Summer Fun with Chronic Illness – Our essay for Mango Health that provides some of our top tips for making the most of the summer while still controlling the heat • Heat & Temperature Sensitivity – Article from the National Multiple Sclerosis Society offering insights into the reasons behinds heat sensitivity strategies to ease the effects the warm temperatures

Dan and I have lived with Multiple Sclerosis for more than two decades and have had some incredible opportunities courtesy of the chronic illness. We've advocated in Washington, D.C., written and published a book; rode in a handicap accessible hot air balloon; and travelled throughout the country sharing our story. Along the way, we've met and become friends with some of the most incredible people. This includes Julie Stamm, a quintessential MS advocate, author, mother, and all-around awesome human being. Yeah, she's that awesome. So imagine how humbled we were when Julie was all in when we invited her to join us for a conversation on our podcast! Julie was diagnosed with Multiple Sclerosis (MS) in 2007. Following her diagnosis, Julie made it her mission to educate, advocate and support others battling chronic illnesses. Join us as we chat with Julie about her life as a mother to her son, Jack, her writing projects (including the children's book Some Days: A tale of love, ice cream, and my mom's chronic illness), and her recent endeavor of co-creating 52 Essential Inclusion Skills - An A to Z Guide to Kindness, Compassion, and Respect for Diverse Abilities with Mind Brain Parenting's, Dr. Jenny Woo. BONUS: Listen as Julie reads an excerpt from her essay MS: Why I Take a Day to Grieve the Loss of the Old Me for our podcast segment “MS In Their Voices.” Here are the links we reference for you to follow up on: • 52 Essential Inclusion Skills - An A to Z Guide to Kindness, Compassion, and Respect for Diverse Abilities – Learn more this important card deck that equips children and adults with the language and understanding of common disabilities and illnesses. • Some Days: A tale of love, ice cream, and my mom's chronic illness – Learn more about the book Julie wrote following the birth of her son, Jack, based on their experiences as a mother and son and overcoming the obstacles MS can impose on everyday life. • 7 Questions with A Couple featuring Julie Stamm – Link to our blog series where we get deeper insights from Julie into what went into the creation of 52 Essential Inclusion Skills. • MS: Why I Take a Day to Grieve the Loss of the Old Me – Link to Julie's Healthgrades article

Experts often describe grief in five or seven stages. If only life with Multiple Sclerosis could be so efficiently contained. Shock. Denial. Anger. Bargaining. Depression. Testing. Acceptance. This all can happen each day before we get out of bed. Yes, we are eternally optimistic and look on the bright side of things under the worst of circumstances. But even the rosiest colored glasses can't see past the harsh realities we face with this progressive disease. We still require our regular moments to mourn. Join us for this frank and candid discussion about this very emotional topic and how even the happiest of times can blindside us to simultaneously spiral through several – if not all seven – stages of grief in a matter of minutes. Grief is real. And so is grace, which is what we all owe to ourselves to give us the time we need to mourn in order to find the strength to rise up and move forward. Here are the links we reference for you to follow up on: • MS: Why I Take a Day to Grieve the Loss of the Old Me – Healthgrades article written by MS advocate Julie Stamm • Taking on PT & exercise with Heather Schoen – A Couple Takes on MS Podcast episode featuring Jennifer's first physical therapist and legendary Team MonsterS member • 5 coping strategies for being diagnosed with MS – MS Focus Magazine article by MS advocate Matt Cavallo • From the runway to Walk MS – A Couple Takes on MS Podcast episode featuring 8-year-old Maximus Miedema, one of the top fundraisers for Team MonsterS, who turned the mic and interviewed us about Walk MS • Tips for a Positive Outlook When You Have MS – U.S. News & World Report patient advice article • Central Michigan University Doctor of Physical Therapy – For information on the program that has done so much to support us and the National MS Society for the past 18 years • I can't walk, but I still Walk MS – Our blog post highlighting the images and people behind Team MonsterS and Walk MS 2023 • Team MonsterS – To donate to our Walk MS Frankenmuth team

This an episode that got very personal for the two of us, but Jennifer took it even more personally. What an amazing moment to have a candid conversation about physical therapy, exercise and Multiple Sclerosis with Heather Schoen – the first physical therapist Jennifer saw shortly after she was diagnosed with MS more than 25 years ago. Heather is the Director of Clinical Education of the PTA Program at Baker College in Owosso, Michigan. The connection between Jennifer and Heather didn't end when the last of the prescribed PT sessions concluded. No, they've remained dear friends for the more than two decades that have followed. How dear? How about the fact that Heather attended our wedding in 2005, has been a member of Jennifer's Walk MS team each year since it began in 1998 and will join us again this year for Walk MS in Frankenmuth. Join us as we chat with Heather and get her professional insights into the value of PT and exercise for people living with MS through questions such as what exercise she recommends, why patients with MS need to exercise and what are the safety issues people with MS need to consider? Here are the links we reference for you to follow up on: • Exercise ­­– National Multiple Sclerosis Society resource that provides a comprehensive overview of exercise and physical activity with MS • MS exercise guidelines – Article produced by the National Center on Health, Physical Activity and Disability • Exercise and Multiple Sclerosis – Fact sheet developed by Cleveland Clinic • Team MonsterS – To join or donate to our Walk MS Frankenmuth team

There is a lot of momentum and several firsts in this episode: • It starts with Jennifer sharing insights into her experiences modeling in Central Michigan University's Threads Fashion Show that featured accessible fashion for the first time. • It ends with the first time we feature a special guest – 8-year-old Maximus Miedema – who came to our house with a list of insightful questions to interview us about what MS is and why it's important for us to participate in Walk MS on May 13. About Threads Accessibility was in fashion at CMU, and Jennifer was part of it. “… I was included. Non-traditional 48-year-old, plus-size me. Non-walking, power wheelchair driving me. They wanted to include me. …” We discuss why this was such an incredible experience for her and other models who use assistive devices and, and we imagine how it likely was the same for all the students who designed fashionable accessible clothing. About Maximus and Walk MS What can we tell you about our 8-year-old friend Maximus? In a nutshell, he is: • A dynamic person with a kind and huge heart who has participated as a member of our Walk MS team – Team MonsterS – long before he could walk. • The son of our great friends Adam and Erica Miedema, who have joined us as members of Team MonsterS long before Maximus was born. • Among the top 25 fundraisers at last year's Walk MS in Frankenmuth, Michigan, raising a total of $1,080. Maximus gets behind the mic and turns the interview tables on us to hit us with questions as fundamental as, “What is Multiple Sclerosis?” to as hard-hitting as, “Are you guys famous at the MS Walk?” Here are the links we reference for you to follow up on: • Inside accessible fashion: My modeling moments – Take a few minutes to check out this photo/video essay to get inside Jennifer's mind as she rolled down the runway and to follow the path that made her a model. • Taking on Threads & accessible fashion – Join us for this episode of our podcast where we have an engaging conversation with Ian Mull, the Threads advisor and CMU Fashion Merchandising and Design faculty member. • Walk MS – Learn more about this National Multiple Sclerosis Society event and how you can register to participate or donate to support the effort. • Donate to Maximus Miedema – Follow this link to directly donate to our friend Maximus and help him reach his $1,000 fundraising goal for this year's Walk MS.

Talking about a person in a wheelchair likely isn't the first thing people think of when discussing fashion shows and models on the runway. Jennifer will change all of this April 15 when she is among the more than 100 models who will strut their stuff at 25th annual Threads Fashion Show on the Central Michigan University campus in Mount Pleasant, Michigan. Threads is the student-produced fashion show that features the work of aspiring student fashion designers, and their work is dislpayed by a line-up of fashion models. This includes Jennifer and several others who will model custom-designed accessible fashion created for the show. Join us for this episode where we have an engaging conversation with Ian Mull, the Threads advisor and CMU Fashion Merchandising and Design faculty member. Hear what he says is central to the longevity of Threads, the importance of inclusion in fashion, why accessible fashion deserves a spot on the runway, and what trends are influencing fashion in 2023. Here are the links we reference for you to follow up on: • Threads Fashion Show – Check out information about Threads, including how to purchase tickets to see it in-person and how you can watch it online. • Fashion Merchandising and Design – Official website for Central Michigan University's engaging program that's recognized as one of the best in the state of Michigan.

One of the biggest ways we have faced off with our Multiple Sclerosis is using our voices to make positive changes as MS activists. This includes our recent trips to the nation's Capitol in Washington, D.C., and to Michigan's state Capitol in Lansing. All within the same week. Join us for this episode to learn about the issues we addressed and the proclamation we worked on with our State Senator to have introduced and adopted. Here are the links we reference for you to follow up on: • MS activism: 3 goals. 2 capitols. 1 week. – Check out our blog post detailing the work we did and the photos of our experiences. • Accessible Air Travel legislative priority – Background information behind the request to cosponsor the Air Carrier Access Amendments Act and support its inclusion the 2023 FAA Reauthorization • MS Research Funding legislative priority ­– Background information behind the request to support $22 million for the MS Research Program an $7.5 million for the VA MS Centers of Excellence in FY24 • Virtual MS Activist Rally – Learn more about and how you can register for this March 28 virtual gathering for anyone in the MS community who wants to collaborate and drive change through advocacy. • Become an MS activist – Get specifics on how you can get involves with the National MS Society as an MS activist • Threads Fashion Show – Check out information about, and purchase tickets for, Central Michigan University's 25th annual student-produced fashion show that features the work of aspiring fashion designers as modeled by a line-up of fashion models (including Jennifer!).

Step aside, Multiple Sclerosis. You're getting in Kathy Chester's way. To say Kathy, who has had MS for 20+ years, is on the move is an understatement. She's on a mission, and we recently caught up with her to chat about what drives her to keep herself and others with MS moving forward. Join us for this episode as we connect with Kathy and get to the heart of MS Disrupted, her personal overarching brand of virtual and in-person programs, classes and groups developed to help people with autoimmune diseases to keep moving their bodies and exercising in a safe way. Here are the links we reference for you to follow up on: • MS Disrupted Zoom Live – Learn about this online program that consists of four weekly workouts per month via Zoom. • Disrupt, Move and Transform Autoimmune Training (DMAT) – One-on-one virtual sessions with Kathy include tailor-fit exercises specific to your needs and goals. • Women Who Disrupt MS – A virtual support group for women that Kathy co-hosts and is facilitated through the Multiple Sclerosis Foundation. • Move It or Lose It Podcast – Kathy hosts this regular podcast featuring engaging guests who chat about all things that move the mind, body, spirit and soul.

Imagine if we all took the time to go beyond what's comfortable. This is exactly what Jennifer did when she investigated whether multiple sclerosis is considered a rare disease. Turns out it is, and just like that, our disease-related community is no longer defined by the estimated 2.5 million people worldwide who have MS. Jennifer and I, as two people who have MS, are part of greater community of 300 million people around the world who are living with rare diseases. This is why we are thrilled to celebrate Rare Disease Day on Tuesday, February 28. In this episode, we dig into why this is such an important day for everyone living with a rare disease and see how you can expand your network by connecting with this important community. Here are the links we reference for you to follow up on: • Rare Disease Day – The official website detailing everything related to the worldwide campaign. Check it out for great information, engaging stories and exciting digital downloads. • National Institutes of Health – See what this United States-based agency is doing to increase awareness and support Rare Disease Day on February 28.

We can't say enough about Tyler Campbell and the impact he is having on us and members of the Multiple Sclerosis community. You need to hear him for yourself. We are so honored to share with you in this podcast a lively heartfelt conversation we had with Tyler – an author, public speaker, MS ambassador and advocate – who is using his stories and experiences to empower people across the globe. Join us as we chat with Tyler about everything from what he wants people to remember most about who he is to how he is doing since he was diagnosed with MS in 2007 and why his MS diagnosis turned him toward rather than away from his faith. Plus, listen as he reads an excerpt from his Amazon bestselling book, The Ball Came Out, for our podcast segment MS In Their Voices. Here are the links we reference for you to follow up on: • Multiple Sclerosis Association of America's Improving Lives Benefit –  The ninth annual MSAA event, which Tyler will serve as the emcee, that helps the organization to directly impact the lives of people living with MS. • 7 Questions with A Couple featuring Tyler Campbell – A 2021 post on our blog where we asked Tyler 7 questions about his life with MS. • Real Lyfe Reel Talk with TC Speaks – The #1 radio show Saturdays on 104.9 FM The Horn in Austin, Texas, that Tyler hosts. • The Ball Came Out: Life From The Other Side Of The Field – Learn more about Tyler's bestselling book.

These three thoughts keep going through Jennifer's mind after ever since Dan turned 50 in September: “Here we go again.” “If it is worth doing, it is worth doing again.” “Nothing worth having is easy to get.” Seeing Dan hitting the half-century mark reminded Jennifer that her 50th will be here before she knows it. This inspired her to commit to losing some weight. Join us as we have an honest discussion about the challenges that come with striving to lose and maintain a healthy weight when you're living with Multiple Sclerosis. Oh yeah, and how it's that much more difficult when you no longer are able to walk. But fear not! As we say several times in each episode, “Together, we're moving forward.” Listen to hear what is keeping us motivated (hint: it includes us flying in an airplane, Jennifer venturing into some modeling and trying a new weight loss program) to control our health and reach our targeted weight loss goals. Here are the links we reference for you to follow up on: • Managing Weight for MS ­­– This Healthline article addresses ways to maintain a moderate weight when living with Multiple Sclerosis • Noom – This is the weight loss program Jennifer is using to help her change her habits and mindset when it comes to food (and no, she isn't being compensated to talk about or mention this program) • Take Control of Your Weight – An article from the National Multiple Sclerosis Society is centered on giving insights to help you set realistic weight loss goals and manage a healthy weight

We celebrated with the Multiple Sclerosis community as TG Therapeutics announced in the final days of 2022 that the FDA approved Briumvi (ublituximab-xiiy), putting the number of available MS disease-modifying therapies to more than 25. Hooray, right? Of course! But deep down we, as A Couple Takes on MS, still felt somewhat shortchanged. We selfishly wondered, “When will the announcement come that researchers have developed something (think myelin repair) that can help fix the damage MS has caused to our nervous system over the past two decades?” Join us in this episode as we discuss the beauty of what Briumvi brings to MS treatment options and then dig into what lies beyond DMTs in the world of what's next in MS repair and treatment research. Here are the links to the resource we reference for you to follow up on: • Repairing What's Been Lost – National Multiple Sclerosis Society overview of efforts to help restore function. • Diabetes drug metformin promotes myelin repair in rats – Post from MS Society UK about research that showed how fasting and a diabetes drug had a positive impact in repairing myelin. • Promising potential of precision medicine in MS care – Post from our blog about the CureTalks online event Transforming Multiple Sclerosis Care Through Precision Medicine where we, along with fellow MS patient advocate and author Melissa Cook, served on a patent panel with Dr. Amit Bar-Or, MD.

We're going beyond New Year's resolutions in 2023. Who's with us? OK, so what we're talking about technically isn't a resolution. It really is more of a commitment to hold ourselves accountable to our personal challenges to improve ourselves in different aspects of life. Join us in this episode as we follow up on the doctor visits we discussed in Episode 42 before delving into starting the new year with the challenge (a concept we learned about from award-winning author and podcaster Jay Shetty) to build on the momentum we started the final weeks of 2022. Our initial challenge for 2023 is grounded in our PT-CONECT sessions with the Central Michigan University Doctor of Physical Therapy students. Check out our blog post MS, PT and moving forward one punch and one high step at a time to watch the videos of our work and learn more about this one-of-a-kind community PT program. How about you? What are you challenging yourself to do in the first few weeks of the coming year? Here are the links we reference for you to follow up on: 3 Ways to Get Out of Your Comfort Zone & 3 Ways to Challenge Yourself This Week – Jay Shetty's On Purpose podcast that inspired us to think of resolutions more like personal challengesCMU Department of Physical Therapy – For everything you wanted to know about the awesomeness of the best PT program in our world

It's hard to conceptualize, but Multiple Sclerosis doesn't hold the market on our health concerns. In fact, we see other health care providers a lot more often than we connect with our neurologist. For real. On the surface, these scheduled check-ins often have nothing to do with our chronic disease of the central nervous system. But it doesn't mean MS isn't lurking in the background each time we visit our other doctors. Join us as we contemplate the realities we were dealing with as we prepared for our pending appointments with Jennifer's gynecologist, Dan's podiatrist and our shared dentist. You get an inside look into issues like what Jennifer fears the most about each of her doctor visits and why Dan rarely tells new doctors about his MS. And here is the link to the interesting article we discussed about doctors who avoid treating patients with disabilities: For Many Disabled Patients, the Doctor Is Often Not In

New segment – MS in Their Voices – launches A new segment for our 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. Our first featured author is Tamara Sellman. She is the author of INTENTION TREMOR, a book published by MoonPath Press in 2021. This hybrid collection of poems and personal essays chronicles her life in the five years following her MS diagnosis in 2013. Tamara lives in the Seattle area and writes regularly on MS topics. INTENTION TREMOR is available wherever books are sold. For information or to order a signed copy, visit www.intentiontremorbook.com.

In this episode, we pull in our friend Louie Preciado to share his perspectives as a person recently diagnosed with Multiple Sclerosis. He was formally diagnosed December 1, 2021. This diagnosis didn't stop him from achieving his goal to ride the Texas MS150 in April 2022 and six months later finish the MS Ride to the River. But rising to the challenges of these rides was just part of Louie's journey in navigating his life with MS. Join us in our conversation with Louie as he talks honestly about adjusting to living with an unpredictable disease, how his persistence ensured he was prescribed the disease-modifying therapy of his choice, and what he does to stay on track and keep moving forward. Oh yeah, and see what he has to say about whether we were correct in our assertion in Episode 37 that people with MS (like each of us who have had the disease for 20+ years) are forever newly diagnosed. Here are a few ways to connect with Louie: InstagramFacebookWebsite

This one is another Ketchup Episode where Dan, Jennifer, and Ryan just chit-chat. This talk starts with the Digmann's discussing their diagnosis of Covid. That leads into Ryan sharing news about his Grandma, it's sad, so be warned. They do pick it up at the end with talk of Ryan's new kitten, (unnamed at time of recording, but he is now named Buddy or BB) and ending on moments of joy. The Bean/Buddy Relationship in 3 frames:

It's one thing to connect with a mental health provider when you're living with a chronic medical condition, but it's even better when you find one who truly understands the realities you're facing. Dr. Meghan Beier gets it, and the psychologist at Johns Hopkins University School of Medicine (who specializes in Multiple Sclerosis) is on a mission to improve this level of provider understanding. Join us as we have a conversation with Dr. Beier about her passion for improving care for people living with challenging medical conditions and what led her to create Find Empathy, an online resource that provides: • An engaging podcast • A free directory of mental health providers who specialize in working with medical populations • Continuing education for mental health professionals focused on how best to serve patients who live with MS or other life altering illnesses Dr. Beier completed her Ph.D. in Clinical Psychology, Health Emphasis, from Yeshiva University. Following that, she received a postdoctoral fellowship at the University of Washington where she focused on rehabilitation, cognition and mental health in individuals living with MS. She has been featured as a consultant and speaker for organizations such as National MS Society, Can Do Multiple Sclerosis and more. Dr. Beier's research interests include neuropsychological outcomes for individuals living with MS; cognitive rehabilitation; and behavioral approaches to wellness.

More than 22 years have passed since the first time we each heard the life-altering phrase, “You have Multiple Sclerosis.” That's more than two decades, so conversations about being newly diagnosed with MS really have nothing to do with either one of us, right? Not so fast, we say. Join us as we take a matter-of-fact honest look into the realities of living with an ever-changing unpredictable disease of the central nervous system. See why – with the experiences we've had – we conclude that no matter how long you have lived with MS, in many ways you forever can consider yourself newly diagnosed. Here are the links to helpful MS resources we reference for you to follow up on: • nmss.org – National Multiple Sclerosis Society • msfocus.org – Multiple Sclerosis Foundation • mymsaa.org – Multiple Sclerosis Association of America • msviews.org – MS Views and News • realtalkms.com – Real Talk MS podcast • bezzyms.com – MS peer support community • mymsteam.com – MS peer support community • care.twill.health – MS health information

At last! We are hosting the first guest on our podcast! Sure, we have 35 episodes under our podcasting belt, but trust us, Kathy Reagan Young was well worth the wait! Join us as we welcome the dynamic host of TWO engaging podcasts – FUMS: Giving MS The Finger and Patients Getting Paid. Kathy also maintains the FUMS Now! blog and then some, is the proud mother of two daughters and also is living with MS. Yeah, she's that good. In this episode we learn about what led Kathy to decide to launch a website with such a seemingly inappropriate sounding name (listen to hear her more sophisticated alternative interpretation of FUMS), what keeps her moving forward and what brings her joy. We felt so blessed to be the first guests on Kathy's FUMS podcast – she now has 113 under her belt! – and it truly is an honor to feature her as the first guest on A Couple Takes on MS podcast. Here are the links we reference for you to follow up on: • FUMS: Giving MS The Finger – Follow this to listen and subscribe to Kathy's podcast • Patients Getting Paid – Check out “Your safe place to connect, learn, and cultivate a chronicpreneur lifestyle.” • Using Intermittent Fasting to Manage Your MS with Cynthia Thurlow – This is the FUMS episode Jennifer brought up with Kathy that sparked our venture into trying intermittent fasting. • 7 Questions with A Couple featuring Kathy Reagan Young – Consider this a bonus prequel interview to our podcast conversation with Kathy.

Dan and Jennifer advocate for advocation! Everyone has a voice and your voice can't be heard if you don't speak in whatever way you can best. They talk about how everyone in Listener Land (that's you!) can get involved in being an advocate and highlight their experiences joining fellow MS activists and meeting virtually with their legislators and members of their staff this month to talk about securing more funding for MS research. Here the links they reference for you to follow up on: National Multiple Sclerosis Society Advocacy — Learn how you can become an MS activistThe $22 million funding request for the MS Research Program — Look into the details of the main legislative issue we discussed with our federal legislators during their August recessMultiple Sclerosis Activists Play Key Role in Passage of Meaningful Prescription Drug and Health Insurance Legislation — See how activist rocked it in this articleGoodbye to Sandra Dee — Jennifer says farewell to one of her favorites The images behind our Moments of Joy Dan's Moment Jennifer's Moment

Celebrating their new van, the Digmann's are joined by Producer Ryan to discuss the good parts of road trips: air conditioning, snacks, road meals, and more. They also flaunt their ages by griping about how kids these days have everything in the car and we had nothing! Oldster check: remember radios with a dial Dan asks a real thinker: you can have one music album on the road, which one are you picking? Check the blog soon for the Top Five Road Songs from the playlists of the hosts.

Join our conversation to hear how a toxin that's commonly used for cosmetic purposes is a game changer for Jennifer in managing her MS-induced neurogenic bladder. She had her second-ever Botox treatment on July 12, and these treatments have given her increased urinary continence and confidence. And this twice-a-year procedure is just one way Jennifer is showing this disease who's boss. Listen to learn what led her to consider this form of treatment, how her previous experiences with MS disease-modifying therapies instilled the confidence to move forward with Botox, and what her advice is for anybody with MS who is looking into this option for treating MS-related incontinence issues.