A Couple Takes on MS

“I’d rather live my life than have MS live it for me.” We’ll admit it: For a long time, whenever we saw stories about gut health, diet, and Multiple Sclerosis, we pretty much shrugged our shoulders. After all, we’ve each been living with MS for more than 25 years. What difference could gut bacteria possibly make for us now? Turns out, that may have been the wrong question. In this episode of A Couple Takes on MS, we dig into some recent research that made us think differently about gut health and Multiple Sclerosis, inflammation, and the choices we make while living with MS. We quickly discovered the conversation raises far more questions than answers. • How much attention should we pay to what we eat and how it makes us feel? • What can we actually control when living with an unpredictable disease? • At what point does trying to live healthier start getting in the way of simply living? We certainly don’t have all the answers, but we’re realizing that staying open to new information may be just as important as anything we thought we already knew. And because this is A Couple Takes on MS, we also took a slight detour involving our 21st wedding anniversary, first legal drinks, and a late-night run for Taco Bell. 😉 Here are the links that offer further insights into our conversation: • A healthy diet becomes a post-diagnosis priority in MS, study finds • Gut-Microbiota, and Multiple Sclerosis: Background, Evidence, and Perspectives • Mediterranean-style diet may lower MS risk, study suggests • Teenagers who eat a healthy diet face less risk of later MS, study suggests *** Thank you for listening to A Couple Takes on MS. We're grateful you're moving forward with us one step, one roll, and one story at a time. If you enjoyed this episode, please consider following the podcast, leaving a rating or review, and sharing it with someone who could use a little encouragement today.

“Those moments are teachable, not only for others but for ourselves.” Sex. Drugs. Rock and roll. Yep, we're going there. Well, sort of. In this episode of A Couple Takes on MS, we're talking about three recent experiences that reminded us how living with Multiple Sclerosis can turn everyday moments into opportunities to advocate, adapt, learn, and sometimes laugh. Join us as we take on: Sex, disability, and assumptions — Why the way healthcare providers ask personal questions matters, and how one appointment became an unexpected teachable moment. The power of language — Why “wheelchair bound” doesn't describe Jennifer's reality and how her wheelchair represents mobility, freedom, and independence. Drugs, insurance, and self-advocacy — Dan's experience finding another way to access a medication his insurance wouldn't cover and why it pays to ask about your options. Staying informed about your care — How conversations with healthcare providers and the MS community can help us continue learning about medications, treatments, and their long-term effects. When accessibility doesn't go according to plan — How our concert seating mistake, some wonderful Pine Knob staff, and a little patience helped turn potential frustration into an unforgettable night of rock and roll. Yes, sex, drugs, and rock and roll sparked this conversation, but the real lesson is something we continue learning again and again while living with MS: keep asking questions, keep advocating for yourself, and leave a little room for grace along the way. From the ACTOMS blog Want the full story behind the “rock and roll” part of this episode? Jennifer shares how a ticketing mistake, some incredible people, and a little patience turned an accessibility challenge at Pine Knob Music Theatre into one of our favorite concert experiences. Read Sometimes accessibility looks like community *** Thank you for listening to A Couple Takes on MS. We're grateful you're moving forward with us one step, one roll, and one story at a time. If you enjoyed this episode, please consider following the podcast, leaving a rating or review, and sharing it with someone who could use a little encouragement today.

Editor's note: As students prepare to head back to school, we’re excited to revisit one of our favorite conversations. Children are naturally curious, and the way we answer their questions about disability can shape a lifetime of understanding, kindness, and inclusion. This episode was originally released on July 15, 2024, during Disability Pride Month, but its message about talking to children about disabilities feels especially meaningful as a new school year begins. We hope you'll join us for this encore presentation. __________________________________________________________________________ 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?” Such comments can open the door for constructive conversations 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.” But what if a child’s curiosity could become an opportunity for understanding? How can parents help turn these situations into teachable moments? 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 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 meaningful conversations about understanding, kindness, and inclusion. 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: • People First Language • 10 Strategies for Talking to Kids About Disabilities ***** Remember to rate, review, and subscribe to A Couple Takes on MS Podcast for two insightful perspectives on this one multifaceted disease.

"We have to stay on top of it. There isn't a golden year where MS suddenly decides to be kind to us." Growing older is something we all experience. But when you live with Multiple Sclerosis, aging often raises a different question: Which changes are simply part of getting older, and which are caused by MS? In this episode, we reflect on a recent MS Views and News webinar featuring Dr. Aaron Boster—MS and Aging—that challenged us to think differently about aging with MS. We discuss disease-modifying therapies, protecting our functional reserve, and the healthy habits that can help preserve the life and abilities we have today. We also share updates from our recent neurology visits and infusion treatments, discuss adapting to changes in healthcare, and reflect on why community support remains one of the best resources for navigating life with MS. In this episode, we explore: Why aging and Multiple Sclerosis are often intertwined and why it can be difficult to tell them apart. What Dr. Aaron Boster shared about disease-modifying therapies and why they continue to matter as we grow older. The importance of protecting your functional reserve through exercise, nutrition, sleep, hydration, and healthy lifestyle choices. Our recent infusion experiences, changing treatment routines, and adapting to new healthcare challenges. Why support groups, shared experiences, and practical tips from others living with MS can make all the difference. Keep the conversation going What habits or routines have helped you age well while living with MS? We'd love to hear your story and learn what's worked for you. Connect with us through our website or at [email protected]. *** Thank you for listening to A Couple Takes on MS. We're grateful you're moving forward with us one step, one roll, and one story at a time. If you enjoyed this episode, please consider following the podcast, leaving a rating or review, and sharing it with someone who could use a little encouragement today.

"Sometimes the best medical news isn't dramatic. Sometimes it's hearing one simple word: Stable." Continuing our previous conversation about Multiple Sclerosis progression and reclassification, we're back with the update we'd been hoping to share. After meeting with our neurologist, reviewing MRI results, and establishing care with a new primary care provider, we're reflecting on what stability really means after living with Multiple Sclerosis for decades and why "stable" can be one of the most encouraging words you'll ever hear. We also talk about rebuilding strength after setbacks, why physical therapy still matters, and the importance of finding healthcare providers who truly listen. In this episode, we discuss: The relief of hearing "no new lesions" after an MRI. Why rebuilding strength after surgery and deconditioning takes patience. How living with MS doesn't mean ignoring the rest of your health. Why finding healthcare providers who listen and partner with you makes all the difference. How physical therapy, exercise, and adaptive equipment continue to play important roles in our lives. Why we're choosing to move forward rather than living in fear as we continue aging with Multiple Sclerosis. We also explore why building strong relationships with your neurologist and primary care provider can make a tremendous difference throughout your MS journey. We'd love to hear from you What makes a great neurologist or healthcare provider in your experience? Have you ever changed doctors because you weren't being heard? Or have you found a physician who has made all the difference in your MS journey? Share your thoughts in the comments or connect with us through our website or Email Thank you for listening to A Couple Takes on MS. We're grateful you're moving forward with us one step, one roll, and one story at a time. *** Remember to rate, review, and subscribe to A Couple Takes on MS Podcast for two insightful perspectives on this one multifaceted disease.