A Couple Takes on MS

“We don’t know what each other is going through, and that’s why kindness and patience and grace are so important.” Celebrities may live very public lives, but that doesn’t mean we know everything they’re living through. Recent stories about Selma Blair, Christina Applegate, and R.J. Mitte got us thinking about chronic illness, disability, privacy, mental health, and how quickly people form opinions when they don’t know the whole story. As two people who have lived with Multiple Sclerosis for decades, we know that a diagnosis is only one part of a much bigger story. When that story plays out in public, the expectations and scrutiny can become even more complicated. In this episode, we talk about: Compassion and accountability – How do we extend grace when we don’t know everything someone is experiencing while still recognizing personal responsibility? One person doesn’t represent an entire community – MS affects everyone differently, and the actions or experiences of one person living with MS shouldn’t define the disease for everyone else. The uncertainty of diagnosis – Christina Applegate’s recent health news leads us to consider what it would feel like to spend years understanding and treating one condition only to be told you may be dealing with something else. Disability representation and mental health – We reflect on R.J. Mitte, Breaking Bad, the importance of disabled actors portraying disabled characters, and why conversations about mental health and support matter. The pressure of always being “on” – Does fame make living with chronic illness easier, or can public expectations make an already exhausting experience even harder? We’re also excited about something coming up for us: participating in MS Focus on Fashion, where we’ll be rolling and walking the runway in support of the Multiple Sclerosis Foundation and celebrating accessible fashion. Because whether someone is famous or someone you see every day, none of us knows everything another person is carrying. Sometimes a little kindness, patience, and grace can go a long way. Here are the links that offer further insights into our conversation: • Pseudobulbar Affect and MS: Uncontrollable Laughter, Crying, and More • MS and Mental Health • Why Is Misdiagnosis So Common With Multiple Sclerosis? • The Mental Health of People with Disabilities *** 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.

“We want to continue doing things.” — Jennifer Living with Multiple Sclerosis involves more than managing symptoms. There’s also the work people don’t always see. In this episode of A Couple Takes on MS, we pull back the curtain on the hidden work of living with MS and the reality that, as Jennifer puts it, “Everything takes longer.” But this isn’t about complaining. It’s about acknowledging what living with MS requires while continuing to participate, adapt, and show up. In this episode, we talk about: Why everything takes longer. Getting ready, getting out the door, and managing the extra steps that come with MS and caregiving. The work behind accessible travel. Hotels, airports, transportation, medical equipment, bladder issues, and everything that has to be considered before leaving home. The cost of accessibility. From hotel accommodations to renting equipment we need simply to travel. Whether “the juice is worth the squeeze.” Some opportunities require a lot of preparation, so we weigh the work against what the experience means to us. Accepting help without surrendering independence. Sometimes support means recognizing when someone needs help. Other times, it means giving them room to keep doing what they can. The little hacks that make life easier. Untying shoes, opening jars, putting away silverware, and conquering those seemingly innocent resealable freezer bags. 😉 So much of this work remains hidden because we’ve gotten pretty good at doing it. Talking about it can remind us that none of us has to figure everything out alone. What is some of the hidden work you do to live with MS, disability, or chronic illness? And what tricks or adaptations make it a little easier? Reach out to us at [email protected] to share your experiences! *** 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 may relate.

“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.