A Couple Takes on MS: Recent Episodes

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We literally and figuratively are A Couple Takes on MS. Yes, we both are living with completely different forms of Multiple Sclerosis (Dan’s has RRMS, Jennifer has SPMS), but we have been happily married for nearly 16 years. Married AND happy while we both live with the same chronic illness? Take it from us: It all IS possible. OK, so it’s not all sunshine and rainbows. Check in with us every other week as we have conversations about our experiences, insights and perspectives on pushing through the constant challenges and storms of daily life with (and without) MS.

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.

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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 goingWhat 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 acoupletakesonms@gmail.com.

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 youWhat 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.

"We aren't looking for answers yet. We're learning how to sit with the questions."

As we prepare for an upcoming appointment with our neurologist, a simple question from Jennifer sparked a conversation neither of us expected to have.

What if Dan's MS has progressed?

To be clear, nothing has changed. We haven't received any new diagnosis, and Dan has not been reclassified from relapsing-remitting MS to secondary progressive MS. But after nearly three decades of living with Multiple Sclerosis and noticeable changes in his gait and energy levels, it felt like an important conversation to have.

In this episode, we talk openly about our fears, questions, and uncertainties that can come with long-term MS. We discuss:

What prompted us to start talking about disease progression before our upcoming neurology appointment
How physical therapy has revealed both strengths and challenges in Dan's mobility and endurance
Jennifer's experience transitioning from relapsing-remitting MS to secondary progressive MS years ago
The realities of caregiving, aging, and adapting to changes in ability over time
Why community, conversation, and preparation matter when facing difficult questions about the future

More than anything, this episode is about facing possibilities without letting them define us. Regardless of what happens at our next neurology appointment, we are still the same people we were before we walked into the office.

We hope you'll join us for this conversation, especially if you've ever wondered what the future might hold for your MS or how to navigate the uncertainty that comes with living with a chronic illness.

Remember to rate, review, and subscribe to A Couple Takes on MS Podcast for two insightful perspectives on this one multifaceted disease.

“For a long time, I assumed caregiving was simply what spouses do. Then hernia surgery showed me just how much family caregivers carry every day.”

We have participated in Older Michiganians Day at the Michigan State Capitol for more than two decades, advocating for programs and policies that help people age and live independently in their own homes.

What began as advocacy for Jennifer and the MI Choice Medicaid Waiver Program has evolved into something much broader: advocating for caregivers, aging in place, and the support systems that help people live with dignity in their own homes.

In this episode, we reflect on a surprising realization that the young couple who first attended Older Michiganians Day more than 20 years ago (that’s us!) now officially qualify as "older Michiganians" themselves.

We discuss Dan's opportunity to speak on the Capitol lawn about family caregiving, the lessons learned during his recent hernia surgery recovery, and why support for unpaid family caregivers is becoming increasingly important as Michigan's population ages.

In this episode, we get real about:

Realizing we have become the "older Michiganians" we once joked about not being
How the MI Choice Medicaid Waiver Program helps Jennifer remain at home
The often-invisible work performed by unpaid family caregivers
Proposed Michigan legislation supporting family caregivers
Aging with Multiple Sclerosis while continuing to advocate for change

We hope this conversation encourages you to learn more about caregiving, advocacy, and the importance of supporting those who support others.

Here are the links that offer further insights into our conversation:

This conversation serves as a companion to our recent Older Michiganians Day essay, where we share photos from the event, Dan's speech, and additional information about the caregiving advocacy efforts discussed in this episode.
Learn more about the Michigan MI Choice Medicaid Waiver Program
Explore Older Michiganians Day 2026 resources supporting family caregivers and aging in place

Thank you for listening to A Couple Takes on MS.

We are honored to be included among FeedSpot's 40 Best Multiple Sclerosis Podcasts. While rankings aren't why we do this work, we're grateful for the opportunity to share our experiences and connect with others navigating life with MS.

Remember to rate, review, and subscribe to A Couple Takes on MS Podcast for two insightful perspectives on this one multifaceted disease.

“Is it ever enough… or are we always waiting for the next breakthrough, the next voice, the next reason to hope?”

We found ourselves in an unexpected place for this episode: talking about Multiple Sclerosis (MS) through the lens of the NFL Draft.

Of course, the #1 overall draft pick and Heisman Trophy winner Fernando Mendoza was making lots of headlines, but the stories went way beyond his leadership on the football field.

Mendoza also was gaining attention for championing efforts to raise awareness and funding for research to end MS, the disease which his mom, Elsa, has lived with since 2008.

So when a high-profile moment shines a spotlight on MS, whether it’s with the #1 NFL draft pick or a celebrity diagnosis, it raises a bigger question:

What do we actually want from that attention?

Visibility definitely opens the doors for MS advocacy and research, but it can also create comparisons that don’t reflect the reality of living with MS. As with everything in MS, there is more than one answer.

In this episode, we explore the complicated mix of MS awareness, expectations, frustration, and hope that comes with seeing Multiple Sclerosis represented in the public eye and across media. We talk about:

The impact of celebrity MS stories on awareness and perception
Why increased visibility doesn’t always lead to a cure for MS
How different voices shape the narrative around chronic illness and disability
Why “control what you can control” matters when living with MS

We also reflect on how far the MS community has come—from just a few disease-modifying therapies to more than two dozen today—and why, even with that progress, it still can feel like we’re waiting.

Here are the links that offer further insights into our conversation:

Listen to the MeSsy podcast with Christina Applegate and Jamie-Lynn Sigler
Learn more about our Walk MS team, Team MonsterS, and how you can support us
Check out the powerful video from Max the Dollar Kid and consider making your $1 donation

We’d love to hear from you

What do you expect when celebrities or public figures talk about MS? Share your thoughts in the comments or email us at acoupletakesonms@gmail.com.

Remember to rate, review, and subscribe to A Couple Takes on MS Podcast for two insightful perspectives on this one multifaceted disease

“I don’t expect to see a cure in my lifetime… but I will never give up hope.”

Some conversations feel bigger than the milestone they represent.

As we reach Episode 100 of the A Couple Takes on MS Podcast, we knew this moment was about more than looking back. It was about honoring the people who helped us move forward.

For us, that starts with Cathy Chester.

In our 100th episode, we sit down with Cathy, an iconic multi-award-winning MS advocate, writer, and someone who has played a meaningful role in helping us find our voice in this space.

She was diagnosed in 1986 and brings nearly four decades of lived experience to a conversation that is honest, reflective, and deeply needed.

We talk about what it really means to age with Multiple Sclerosis, the uncertainty of separating MS from “normal” aging, and how perspective evolves over time.

Cathy shares what it was like navigating a diagnosis before treatments existed, how hope has shifted over the years, and why community and communication still matter now more than ever.

This includes talking about:

The evolution of MS treatments—and the emotional reality behind them
Aging with MS: how do you separate progression from aging?
The mental and emotional side of MS that isn’t talked about enough
Why hope still matters, even when expectations change
What it means to “control what you can control” in everyday life

More than anything, this episode is about resilience and learning to live in the unknown while choosing hope.

And this conversation is a reminder that while treatments, timelines, and expectations may change, the need for honest conversations and real connection never does.

If this episode resonates with you, consider sharing it with someone who might need to hear it.

And as always, thank you for being part of this journey with us... 100 episodes and counting.

Here are the links that offer further insights into our conversation:

• Check out Cathy’s website An Empowered Spirit

• Enjoy the 7 Questions with A Couple feature with Cathy on our blog from several years ago

• Get social: Follow Cathy on social media, including Instagram, Facebook, and LinkedIn

Remember to rate, review, and subscribe to A Couple Takes on MS Podcast for two insightful perspectives on this one multifaceted disease.

“How would you feel if everybody’s talking about you behind your back? You need to be talking to the actual patient.”

Just days before our conversation for this episode, Briana Landis was on Capitol Hill advocating for the Multiple Sclerosis community and bringing real stories into rooms where decisions are made.

Her work in Multiple Sclerosis advocacy continues to push for better research, access, and patient-centered care.

This is nothing new for Briana.

Diagnosed with Multiple Sclerosis at just 4 years old, she has spent her life turning her lived experience into action.

In this episode, Briana, now 28, shares what it means to grow up with MS, step into advocacy, and speak up in spaces where patient voices are often missing.

We take a deep dive with Briana into:

A behind-the-scenes look at advocating for Multiple Sclerosis on Capitol Hill
Why patient voices must be part of healthcare conversations
What it's really like growing up with MS and what still needs to change
How small moments of advocacy can lead to real impact

Briana does so much more than talk about advocacy. She lives it.

And in doing so, she reminds all of us that our stories carry weight, especially when they’re shared in the right rooms, at the right time.

Here are the links we referenced that offer further insights into our conversation:

• Watch Briana’s TED Talk The Nerve to Synapse: Connecting as My Body Disconnects

• Explore the details about the two priority issues that Briana and nearly 170 activists took to Capitol Hill in late March

• Learn more about how you can share your voice and get involved with advocacy through the National Multiple Sclerosis Society

• Donate to support Briana’s fundraising efforts for Briana’s Team at the Raleigh Walk MS event

Remember to rate, review, and subscribe to A Couple Takes on MS Podcast for two insightful perspectives on this one multifaceted disease.

In this episode of A Couple Takes on MS, we welcome Brian Wallace,a former University of Michigan offensive lineman who helped lead the Wolverines to four Big Ten championships and three Rose Bowl appearances.

Diagnosed with Multiple Sclerosis (MS) in 1997 at age 27, Brian has spent nearly three decades navigating life with MS while continuing to move forward. Today, Brian hosts the MS Michigan Man 64 Podcast, where he shares honest conversations about life with chronic illness and the mindset it takes to keep going.

Brian joins us to talk about football, life after diagnosis, the mental challenges of chronic illness, and why community and conversation matter so much in the MS world.

In this episode, we talk with Brian about: His journey from Michigan football to living with MS * How a competitive mindset helped shape his approach to the disease * How isolation can affect people living with chronic illness and the importance of community * Why he started the MS Michigan Man 64 Podcast* to focus on positive, honest conversations about life with MS * The emotional and mental health challenges of living with Multiple Sclerosis * Why building community and sharing stories matters

👉 You can explore Brian’s podcast here: *MS Michigan Man 64 Podcast*

From our blogReflecting on the conversation with Brian, Jennifer recently revisited an essay she wrote about the Michigan football game she missed shortly after her MS diagnosis and the lesson it taught her about living with Multiple Sclerosis without regrets.

👉 Read the essay here: The biggest Michigan game I missed and the lesson MS taught me

Remember to rate, review, and subscribe to A Couple Takes on MS Podcast for two insightful perspectives on this one multifaceted disease.

When you’re diagnosed with Multiple Sclerosis (MS), there’s often an unspoken expectation that you’ll process it, accept it, and eventually move on.

But what happens when the thing you’re supposed to “move on” from is a chronic, progressive disease that you carry with you every single day?

In this honest and deeply personal conversation, we unpack the myth of moving on with Multiple Sclerosis, and what it really means to live with a long-term neurological condition. From dreams of walking again to small victories like standing and pivoting, we explore what it looks like to live with MS nearly three decades after diagnosis as both patient and caregiver.

Is moving on even possible, or is the goal something different?

In this episode, we talk about:* The difference between moving on and moving forward after an MS diagnosis * Living with Multiple Sclerosis for 25+ years and how perspective shifts over time * Grief and chronic illness and why it resurfaces even decades later * Caregiving and marriage while navigating progressive disability * Society’s expectations around acceptance, resilience, and “getting over it” * Finding gratitude in small, everyday wins while living with MS

Jennifer shares what it’s like to dream about walking and wake up to the reality of mobility challenges. Dan reflects on accepting numb hands, shifting abilities, and life as a caregiver to a spouse with MS.

Together, we wrestle with a question many in the chronic illness community quietly carry:

Can you ever really move on from Multiple Sclerosis or is acceptance less about closure and more about courage?

For those living with Multiple Sclerosis, caregiving for someone with MS, or navigating any chronic illness, this episode is a reminder that grief doesn’t have an expiration date. But neither does resilience.

We’d love to hear from you!* Do you ever have moments where you forget you have Multiple Sclerosis? * What does “moving forward” look like in your life right now?

Email us at acoupletakesonms@gmail.com to help keep this conversation going.

Remember to rate, review, and subscribe to A Couple Takes on MS Podcast for two insightful perspectives on this one multifaceted disease.

In this episode of A Couple Takes on MS, we sit down with our pastor, Pastor Dana Hendershot, to talk about one of the biggest questions that can rise up after a diagnosis like MS (or cancer): Why did God let this happen?

Dan reflects on 26 years since his MS diagnosis and how faith can change over time, not always through easy answers, but through presence, perspective, and community. Pastor Dana shares the moment her theology of suffering shifted, what she learned during her own cancer journey, and why it’s okay to bring every emotion to God. Including anger.

We talk about prayer as breath, the difference between “God caused this” and “God is with you in this,” why joy only exists in the present moment, and how hope sometimes looks like being carried by others when you can’t carry yourself.

In this episode, we get real with Pastor Dana about:• Where God is in diagnosis and suffering• Why it’s OK to be angry with God (and why God can handle it)• Prayer as presence and the Spirit as the promise• Theology of the cross vs. theology of glory• Hope, community, and being carried when you’re worn down• Finding joy right now and why singing can help shift your mind

And Jennifer expands on this podcast (and a metaphor from Pastor Dana that she ca't getrb out of her head in her essay, “Multiple Sclerosis and faith: the rip in our canvas.”

An open invitation for you, our listenersWhere have you felt God’s presence during a difficult season in your life? We’d love to hear from you at acoupletakesonms@gmail.com.

About our guest:

Pastor Dana Hendershot is an ordained pastor in the Evangelical Lutheran Church in America and has served as Senior Pastor of Immanuel Lutheran Church in Mount Pleasant, Michigan, since 2011. Dana holds a degree in psychology with a focus in neuropsychology and a Master of Divinity from the Lutheran School of Theology at Chicago, where her studies explored the intersection of science and faith.

In addition to her congregational ministry, Dana serves as Chair of the Lutheran Alliance for Faith, Science, and Technology, helping lead national conversations about how theology, scientific discovery, and human curiosity connect. Her writing has appeared in Working Preacher, The Lutheran, and Lutheran Partners, where she brings thoughtful theology into everyday lived experience.

In 2023, Dana was diagnosed with Large Cell B Non-Hodgkin’s Lymphoma and underwent extensive treatment. That experience deepened her understanding of the body, vulnerability, and what it means to show up for others with compassion and presence.

Dana has also been deeply involved in community advocacy. She helped establish Mount Pleasant’s first rotating homeless shelter—Isabella County Restoration House—serves on Central Michigan University’s Institutional Review Board, and previously served on the Interfaith Action of Southwest Florida Board of Directors while advocating for farmworker justice alongside the Coalition of Immokalee Workers.

Remember to rate, review and subscribe to A Couple Takes on MS Podcast for two insightful perspectives on this one multifaceted disease.

Adam Powell’s social media account name says it all.

Indeed, Multiple Sclerosis MSd w/the Wrong MFR when it decided to enter his life as Primary Progressive MS in June 2019.

Join us for this engaging and insightful conversation with Adam Powell, a committed MS advocate and inspiring voice for the MS community.

Adam shares the frustration of an initial misdiagnosis—with his symptoms first mistaken for a sports hernia—and the life-changing shift when his condition rapidly worsened, forcing him to use a wheelchair. Using vulnerability and humor, he emphasizes the importance of mental strength and perseverance in managing MS and talks about how he’s now aiming to launch his own MS nonprofit to help others.

Listen for his meme-worthy comments on the power of resilience, the importance of community, and the belief that even in tough moments, progress is possible.

Be sure to follow Adam on:

• Instagram

• TikTok

Remember to rate, review and subscribe to A Couple Takes on MS Podcast for two insightful perspectives on this one multifaceted disease.

Yes, it’s been 10 months since our last podcast, but we didn’t stop moving forward. Rather, we stepped away to give ourselves time.

Dealing with Jennifer’s dad's illness and coping with his passing on October 5, 2024, revealed realities no one could have prepared us for.

It still is hitting us hard.

Time has gone on, and with it, we realized it was time to continue moving forward with the things we had set aside, such as our A Couple Takes On MS podcast and blog.

Join us for this comeback episode of sorts, where we share insights into our emotional journey through personal loss, health challenges, and unwavering resilience.

We also explain how a recent trip to Boston and a Red Sox game at Fenway Park — as part of a regularly scheduled MS4MS event — helped us honor, remember and celebrate Jennifer’s dad.

As Jennifer said, "Life with Multiple Sclerosis doesn't stop - and neither do we!"

Whether you're living with a chronic illness or supporting someone who is, we hope this episode offers comfort, humor, and heartfelt moments that remind us all that life's challenges don't define us — how we face them does.

Here are links to sites that offer depth and insights for this conversation:

• From grief to gratitude: Remembering My Dad at Fenway with MS4MS – Our A Couple Takes on MS blog post from Jennifer about the reasons behind and the photos that tell the stories of this epic, once-in-a-lifetime trip.

• Mission Stadiums for Multiple Sclerosis – Official website that tells you everything about the awesomeness that is MS4MS.

• 7 Questions with A Couple featuring Sam Greenberg – Our interview with Sam, CEO and founder of MS4MS, that appeared on our blog in 2021.

• Navigating pomp and unexpected circumstances – Learn all about Dan’s graduation ceremony this past May at Wartburg College, where he received his MA in Leadership and gave his class address during the hooding ceremony without ever setting foot on the campus back in Iowa.

Remember to rate, review and subscribe to A Couple Takes on MS Podcast for two insightful perspectives on this one multifaceted disease.

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 CampbellTo 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 StammTo 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 learningHear 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.

The Ball Came Out: Life From The Other Side Of The Field

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

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.

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.

The Ball Came Out: Life From The Other Side Of The Field

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 challenges
CMU 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:

Instagram
Facebook
Website

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.

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 this year's attempts to get more funding for MS research. Jen also acknowledges the passing of Olivia Newton John in Moments of Joy... it makes sense.

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.

The Digmanns are joined in their home studio by a surprise guest, Producer Ryan! They mostly ramble, as is Ryan's mode of communication. Topics covered include: Complete randomness, childhood memories, childhood injuries, toxic positivity, movie remakes, heat management as you age, Mustard, and Moments of Joy.

After having our 2007 accessible minivan serviced before Dan and I made the road trip back to Iowa, we learned that our beloved Casper was questionable to make our 1,000 mile roundtrip journey. Gulp! What are we going to do? What should we do?

Dan and I talk through the challenges that come with the accessible vehicle buying process. We offer some tips and insights from our experience, such as:

Figuring out what you need and speaking the language
Doing your homework and consulting with someone who knows and can provide recommendations or referrals
Going into the car shopping knowing it may take a lot of effort
Setting realistic expectations
Having a reasonable budget
Listing your wants and needs
Believing that this all will be worth your time and energy

While we are nervous about haggling and the buying process, we must have a safe, reliable van. And hope that the new van we buy is what we will discuss in a future episode 🤞

Can you believe we have never recorded a podcast specifically about caregiving? And we’ve never defined or asked, “What is a caregiver?”

Do you feel comfortable wearing this title? Or having someone in your life who assumes this role?

In this episode, we tackle this tough topic and ask each other if we see ourselves this way. This conversation was triggered by our role as members of the iConquerMS caregiver steering committee and a recently released iConquerMS survey is available for MS caregivers to share their input and provide perspectives as this virtual research committee moves forward with including this segment more intentionally as members of the MS community.

Check out this episode and, if you realize then that you truly are a caregiver for someone who is living with MS, move forward with completing this iConquerMS caregiver survey.

Are you getting worse with your Multiple Sclerosis? Says who? Because, really, what qualifies as getting worse and can you define what this means?

Join us as we dig into this somewhat sensitive topic in response to comments people have made to us about their assessments of how we “look” and as a companion conversation to our recent episode “Rethinking ‘But You Look So Good.’”

We peel apart the layers of what such comments can do to:

• Squash our confidence into submission

• Light a fire and push us to find our strength

• Make us appreciate all that we have that much more • Rethink what we personally think about where we are in our MS journeys

And be sure to catch our lively discussion about showering and MS. It was a clean conversation 😉

Believe it or not, “You look so good” is anything but a compliment for a lot of people who are living with Multiple Sclerosis. We understand why this has the potential to undermine and discredit the overwhelming challenges we are facing. Nobody else can see them so they don’t really exist, right?

Wrong.

Still, is there some value in accepting it as exactly that: a compliment on your outward appearance? So what do you think? Do you take it as a compliment or an insult when you hear these words

In this episode, we debate the pros and cons of what is being said and why it may actually be better than the alternative of people saying things like, “Yeah, you look like you’re living with a chronic disease.”

And we pose a different perspective: Rather than being offended, should we instead be empathetic and offer others the same level of understanding we expect of them?

Talking about your Multiple Sclerosis can be challenging enough in conversations with your family and closest of friends. But how do you even begin to address this reality when you’re dating?

When you meet someone in person, online or through a dating app, do you disclose your MS? If no, why not? If so, when and how?

Join us in this episode where we – along with our fearless podcast producer, Ryan – dig into the pros and cons of disclosing it ASAP or taking the time to get to know each other first.

Hear the reasons why Dan wouldn’t have initially told Jennifer about his MS had he not met her at an MS event, and why Jennifer offered these encouraging words to people living with the disease:

“I wouldn’t want you to give up on your future of finding someone because you are dealing with Multiple Sclerosis. That would be sad.”

Also in this episode are our insights into successful relationships, including:

• Not making your relationship all about disease

• Always being honest

• Not keeping score

• Making a successful relationship the shared end goal between you and your partner

And stick around for Moments of Joy highlighted by the touching words of Ryan’s grandmother, a successful surgery recovery for Dan’s mom and Jennifer’s discovery of fashionable compression socks at the Laite Hebe Store online.

It’s been a long time coming, but hooray! This episode marks the triumphant return of Ryan, our spectacular podcast producer! We take this opportunity (it’s been nearly three months since we’ve recorded together) to chat about everything including:

Ryan’s role as his grandma’s caregiver and his fear of doing everything wrong
Our work as MS activists and asking our federal legislators for $22 million in MS research funding
The connection between MS & the Epstein-Barr virus
Bean the Cat’s erratic eating habits

And what’s awesome about this episode is that Ryan called in from his home in Midland, which is about 30 miles away from us. Why this is so important is that we now have the capability/technology to interview guests on our podcast.

Let’s face it: there never is a good time to be diagnosed with a chronic illness. You never can be prepared for an uncertain future. Along with that, there are a lot of tough questions to answer and face.

So many questions…

You may wonder what does your future look like? Will I have a future? Will I have a partner or will my partner stick with me? Will I be able to continue caring for myself?

In this episode, Dan and I tackle one of the toughest questions: does the disease define us?

Listen to hear how we respond to this as we dig into what it looks like for us here in the middle of the month of March, which is Multiple Sclerosis Awareness Month. Learn more about the issues we addressed at the NMSS Public Policy Conference, the reasons why you (yes YOU!) are the best story teller, and how we connect onions and moldy bread to our lives with MS.

If we ever needed an excuse to take about a month off from recording a podcast episode, the best we could come up with was Jennifer testing positive for Covid.

One of our biggest fears hit on January 25, and we’ve been pretty much playing catch-up ever since. Part of that game of catch-up is recording this, our 24th episode of A Couple Takes on MS.

In this episode, we recap the challenges that come when Covid hits a married couple living with MS whose disease modifying therapies weaken the impact of the vaccines that are supposed to protect us from the virus.

This includes nurses in hazmat suits, Jennifer going solo for a monoclonal antibody infusion, living fully masked for 10 days in our own house, and sleeping in separate beds for the first time in over 16 years of marriage.

But all was not lost on the tense moments of this experience. It tied in perfectly for Jennifer’s essay about National Caregiver’s Day that appeared on MultipleSclerosis.net, and it gave us a reason for two moments of joy:

1) Discovering Dan's favorite podcaster Jay Shetty’s "Daily Jay" on the Calm app

2) Dog sitting for our friends Adam and Erica’s dog, Breslyn

Hey there, Listener Land. We're going to skip this normally scheduled episode time for some quiet contemplation and rest. Our normal schedule should resume with a new episode in two weeks. Thanks!

“We look at everything through the lens of people living with Multiple Sclerosis. Covid-19 affects the entire population, but how does it affect two people with multiple sclerosis taking medication to control the progression of the disease …”

Yes, it’s a new year, but Covid isn’t going anywhere.

As we recorded this first episode of 2022, there were national reports about pending recommendations for people who are immunocompromised (like us who are taking disease-modifying therapies that impact our immune systems) to get a fourth vaccination shot. And to think we first wrote about a possible vaccine in a blog we posted on November 29, 2020.

Join us as we take a realistic look at how we – as two people living with MS – are approaching Covid, vaccines, boosters and the ever-evolving guidance from the CDC.

And here are links to the two helpful resources that we reference in our podcast for further insights and background on the issue of MS and Covid:

• COVID-19 Vaccine: Understanding Additional Doses and Boosters – This January 7, 2022, essay from the National Multiple Sclerosis Society Blog takes a comprehensive yet easy-to-follow look into the current landscape of Covid-19 vaccines and boosters for people living with MS.

• COVID-19 Vaccine Update: Spinal Cord Injury and Disorders and the MS Community – Check out this link for the insightful webinar hosted by United Spinal Association that features discussions with infectious disease specialists including Dr. Clayton Foster, Dr. Scott Newsome and Nicolette A. Louissaint (oh yeah, and experiences from MS patients including the two of us!).

And for all this discussion, we’ll leave you with this final piece of advice and recommendation: Always consult with your healthcare provider for recommendations for how you should proceed with Covid vaccinations, boosters and your MS.

Businesses don’t find success just by winging it. They succeed because they have concrete mission statements and targeted objectives that guide them to pinnacle performance. Why should it be any different for you and the goals you set for yourself?

Turning over the calendar to a new year is a great place to develop a plan to accomplish the longstanding goals you have for yourself. OK, so these hint at New Year’s resolutions, but we prefer to consider them as personal mission statements. Join us as we talk about:

• Why it’s important to write down your goals for what you want to accomplish in 2022

• The purpose of striving to live more intentionally

• What led us to ask ourselves these two pivotal questions: “If not now, when?” and “What are you waiting for?”

Happy listening and Happy 2022!

A classic song of the holiday season gleefully encourages us all to believe this is “the most wonderful time of the year.” This is a great sentiment overall and in theory, but we also know it can be one of the most stressful, frantic, lonely, overwhelming, taxing and (insert your adjective here) time of the year… especially when you’re living with Multiple Sclerosis. How do you make your life with MS easier while still enjoying the holidays? Join us as we offer some of our best MS holiday hacks that will help you simplify the traditions (old and new) of the season and still make everything merry and bright. Be sure to stick around for our Moments of Joy and listen as Dan reads his recent MS Focus Magazine essay MS and end-of-the-year giving ideas for you.

Do you ever feel guilty about having MS? Guilty, as though you deserve to have it or that it’s all your fault? We both have had MS for more than two decades, and we know we did nothing to deserve it or bring it upon ourselves. But, we still have these feelings more often than we’d like to admit, with Jennifer convinced that she has MS because she doesn’t control her weight and Dan is sure MS is his penance in part because he stole a candy bar from his dad’s station when he was 8 years old. Join us as we open up about these all-to-real feelings and what we do to shake our heads of these unsubstantiated thoughts and move forward with guilt-free optimism in doing what we can to control what we can in living with MS.

Jennifer and Dan discuss maintaining perspective and being thankful for what they have; positive things that MS hasn't taken and positives they wouldn't have without the disease in their lives.

Ryan returns to Casa Digmann for a chit-chat episode that mainly focused on Bean and what the future may hold for the fuzzy fellow. The defacto podcast mascot, Bean, only cares about food, eating, more food, and sometimes playing, but the trio were giving him none of that during recording, so he laid in the window the whole episode. Jen & Dan try to answer the question from Ryan, "Is Bean your cat?"

Dan & Jen fly solo again this week, as Producer Ryan is busy moving into a new place.

The couple discusses using a competitive nature in your bag of tricks to deal with Multiple Sclerosis. Dan uses sports as a way to describe battling against the rival team of MS.

Dan brings some power with a reading of an essay from their book near the end of the episode and they wrap up with Moments of Joy.

It was a big week for us as we both were scheduled to receive our respective twice-a-year MS disease-modifying therapy infusions. Sure, Jennifer has taken her Rituxan for about five or six years (we address how time, perceived success or just getting older makes it easy to forget), but Dan was preparing to take his first full dose of Ocrevus. “I’m not scared,” Dan insists barely a minute into the episode. Or was he? Listen to this episode to draw your own conclusions on his faux fear factor and learn more about Dan and Jennifer’s more than two decades of experience with MS DMTs.