There were treatments available, but the options were limited. Many of the conversations centered around managing symptoms and slowing disease progression.

The idea of preventing MS, repairing damage, or using a simple blood test to monitor disease activity seemed more like science fiction than reality.

Recently, we found ourselves reading about some of the latest Multiple Sclerosis research and being amazed by how much has changed.

Scientists are developing medications designed to calm the immune system and someday repair myelin, the protective covering around nerves that is damaged by MS.

Researchers are also studying biomarkers that may help doctors detect disease activity long before it appears on an MRI. New advances in MS treatment and monitoring are giving clinicians greater precision than ever before.

We have experienced some of those advances firsthand, including treatments that have allowed me to periodically borrow my body back in ways that would have seemed unimaginable when we were first diagnosed.

Perhaps most exciting is the growing conversation around MS prevention.

For the first time, researchers are seriously discussing whether Multiple Sclerosis might someday be prevented through vaccines, early interventions, lifestyle changes, and addressing environmental risk factors such as smoking.

Today’s Multiple Sclerosis research includes efforts to repair myelin, identify disease activity through biomarkers, improve treatment precision, and potentially prevent MS before symptoms begin.

As people living with relapsing-remitting MS and secondary progressive MS, we know these breakthroughs may not arrive soon enough to erase the challenges we face today. Yet that doesn’t diminish their importance.

Every advance in Multiple Sclerosis research represents hope.

Hope for people newly hearing the words, “You have Multiple Sclerosis.” Those words can still feel overwhelming, but they land differently today than they did when Dan and I were diagnosed nearly three decades ago.

Hope for families searching for answers.

Hope that future generations may experience a very different disease than the one Dan and I have lived with for decades.

When we were diagnosed in the late 1990s and early 2000s, we never imagined conversations about repairing myelin or preventing MS would become part of the public discussion.

Researchers studying Multiple Sclerosis don’t move as quickly as any of us would like. Progress can feel frustratingly slow. But when we look at where MS treatment and understanding stood in 1997 compared to today, it’s impossible not to see how far we’ve come.

For the first time in a long time, the future of MS feels less defined by limitations and more defined by possibilities.

And that’s something worth celebrating.

The post Hope looks different after nearly three decades with Multiple Sclerosis appeared first on A Couple Takes on MS.

She leaned toward me and said how meaningful his words were.

In that moment, I was reminded why we continue making the trip to Lansing year after year.

We do not go because advocacy is easy or because we enjoy navigating politics. We go because the issues discussed at OMD — especially caregiving, disability support, and aging services — are deeply connected to our lives as a married couple living with Multiple Sclerosis.

What felt especially surreal this year was realizing how long we have been attending this annual advocacy event.

When we first started acvocating shortly after we married in 2005, Dan was 32 and I was 30. We used to joke that we were probably the youngest people on the lawn outside the Capitol during Older Michiganians Day. We certainly did not think of ourselves as “older” Michiganians.

One of the first slogans we learned was, “My home is MI-Choice.”

OMD became our introduction to advocacy around disability services. It gave us one of our first opportunities to speak up for funding for the Michigan MI Choice Medicaid Waiver Program, which helps provide caregiving support so Dan can continue working full time and so I can continue living in my own home.

Now, more than 20 years later, we looked around and realized something we never expected back then:

We ARE older Michiganians.

This year’s slogan was, “Age in place with style and grace!”

Honestly, that is exactly what we hope to do.

Organized through Michigan’s network of Area Agencies on Aging, this empowering day brings together older adults, family caregivers, advocates, and people living with disabilities to speak directly with lawmakers about policies shaping daily life.

When Dan and I first attended, we understood the importance of healthcare, accessibility, and disability support. But over the years, family caregiving became woven into nearly every part of our marriage — our schedules, routines, and future.

Like so many caregivers, we learned to keep moving forward because that is what love often requires.

Somewhere along the way, advocacy became part of how we cared for each other.

That is part of why Dan’s speech resonated so deeply.

Full disclosure: I serve on a steering committee connected to MI Choice and suggested Dan as a speaker on legislative issues affecting family caregivers. Everyone immediately agreed because they know how seriously he takes both advocacy and his role as my husband and primary caregiver.

This year’s priorities included strengthening support for family caregivers, protecting home and community-based services, and continuing conversations about proposals like a caregiver tax credit.

These are not abstract policy discussions. They are lifelines that often determine the difference between independence and uncertainty.

Events like OMD matter because they move conversations beyond statistics and remind elected officials that these policies affect real people, real marriages, and real families.

Caregiving does not pause when the speeches end or the Capitol lawn empties. It continues the next morning and every morning after that.

That is why Dan’s words connected emotionally with so many people in attendance. They were not polished political messaging written from a distance. They reflected our actual lives.

Yes, I was proud watching him speak, but I was equally moved watching the reactions afterward. Seeing someone who works within these systems every day become emotional reminded me that stories still matter.

Continue the conversation

This story didn’t end with the essay. In a recent episode of A Couple Takes on MS, we reflect on becoming “older Michiganians” ourselves, discuss Dan’s experience speaking on the Capitol lawn, and share additional thoughts about caregiving, advocacy, and aging with Multiple Sclerosis.

🎙️ Listen to the podcast episode: Taking on becoming older Michiganians

As we drove home from Lansing later that day, I found myself thinking back to those early years when we attended our first OMD as newlyweds who felt far too young to belong there.

Living with disability and caregiving changes your perspective over time.

And somewhere along the way, we became older Michiganians after all.

The post We used to be the youngest people on the Michigan Capitol lawn appeared first on A Couple Takes on MS.

We did not expect it to become such an important part of our lives.

Now, more than 100 episodes later, we’ve realized something surprising: the podcast has never really been about us.

It has been about connection.

Over the years, we’ve spoken with advocates, caregivers, medical professionals, authors, and people simply trying to navigate life after an MS diagnosis. Some conversations focused on policy and accessibility, while others centered on caregiving, relationships, mental health, or finding humor in difficult moments.

Each one has reminded us that no one moves forward alone.

That’s what made Cathy Chester the perfect guest for the milestone 100th episode.

Our conversation about aging with MS, resilience, and advocacy felt bigger than a milestone episode. In many ways, it reflected what this platform has become over the years: honest people sharing their experiences in hopes that someone else feels a little less isolated.

That lesson has shaped us just as much as the disease has.

Recording these episodes has reinforced that MS affects far more than physical health. It changes relationships, routines, careers, confidence, independence, and expectations for the future.

We’ve also experienced how powerful community can be. We’ve connected with:

• People who turn frustration into advocacy
• Care partners who turn exhaustion into compassion
• Individuals living with chronic illness who continue to show up for others even as they navigate their own challenges

These perspectives have changed how we view success.

For us, 100 episodes is about more than content creation or podcast numbers. It represents consistency, conversation, vulnerability, advocacy, and a willingness to keep showing up, even when life turns unpredictable.

Most importantly, it represents the guests who trusted us with their stories, the listeners who continue to support our work, and the community that continues to remind us why these conversations matter.

One hundred episodes later, we still believe in honest storytelling, advocacy, and moving forward together.

Because, really, continuing to move forward together.has always been the point:

Thanks for your continued support in helping us continue to move forward as A Couple Takes on MS.

The post 100 podcast episodes later, we’re still moving forward appeared first on A Couple Takes on MS.

Walk MS in Frankenmuth began under gray skies, steady rain, and the kind of weather that makes you wonder whether (no pun intended) people will still show up.

But they did.

They always do.

Twenty-eight members of Team MonsterS gathered with hundreds of other Walk MS participants to walk, support one another, and remind us again that Multiple Sclerosis may change lives, but it does not erase community.

Some came packing ponchos. Others carried umbrellas and coffee cups. Everyone brought a reason for being there.

By the end of the day, the skies softened, the rain eased, and the streets of Frankenmuth seemed to glow a little brighter. Maybe we did too.

Together, Team MonsterS raised more than $6,500 for the National Multiple Sclerosis Society. That number matters because it supports research, programs, advocacy, and resources for people living with MS.

Like most years, what stays with me most is not the number.

It is the people. The hugs. The conversations. The knowing that we collectively did what we could to move us all closer to a world without Multiple Sclerosis.

MS can be isolating in ways that are difficult to explain. Walk MS is one of those reminders that none of us are navigating it alone.

There was actually something fitting about the weather that day. The morning felt cold, gray, and uncertain. The afternoon felt hopeful.

Maybe that is part of why this event continues to matter so much to Dan and my friends and family and to so many others in the MS community. It is not because everything is easy or fixed.

It is because people keep showing up anyway.

Here’s a look at how Team MonsterS and others showed up to do their part in getting the world closer to fixing the damage MS already has done and to finding a cure for this disease.

The post Light rain is no match for the reign of Walk MS Frankenmuth & Team MonsterS appeared first on A Couple Takes on MS.

A couple of weeks ago, I tried to buy tickets to see O.A.R. (among our favorite rock bands) at Frederik Meijer Gardens & Sculpture Park in Grand Rapids. We were so excited! The venue was close enough to make the trip manageable, and since we’d never been there before, it felt like the kind of experience worth planning for.

But when I asked about accessible seating, I was told I had to wait until the official public on-sale date.

Not ideal, but okay. I followed the rules.

Tickets went on sale at 9 a.m. Dan called the box office at 9:11.

Eleven minutes after tickets went on sale, every truly accessible seat was gone.

None left.

In a venue that holds 1,900 people.

To be clear: there were still a few so-called “accessible” options, but they weren’t genuinely accessible for me as a power wheelchair user. Pavilion seating would require me to transfer from my wheelchair, which I can no longer do. Lawn seating meant navigating uneven terrain and competing for space in ways that felt more like survival than inclusion.

That’s not meaningful wheelchair accessibility.

And that’s what’s so frustrating.

Accessible seating is supposed to remove barriers for people with disabilities—not create new ones through systems that effectively shut us out before we even have a fair chance.

I did what I was told. I waited. I followed the process.

The process failed.

This is what disability access often looks like: not always blatant exclusion, but policies and procedures that sound reasonable on paper while producing inequitable outcomes in real life.

Living with MS already means thinking ahead about mobility, energy, transportation, and logistics. Something as simple as attending a concert requires strategy. So when even buying accessible concert tickets becomes another obstacle, it’s more than inconvenient.

It’s exhausting and discouraging.

Because accessibility shouldn’t depend on luck, speed, or whether the system was designed with your real-life needs in mind.

It should mean equal opportunity from the very beginning.

This experience isn’t just about one O.A.R. concert. It reflects a broader pattern many disabled people know too well: being told to wait, trust the process, and follow the rules, only to discover the system was never truly built for you in the first place.

I don’t believe anyone intended to exclude me.

But intent alone doesn’t create access.

Action does.

And until accessible seating truly prioritizes equitable access for the people it was created for, too many of us will keep finding ourselves left out before the music even starts.

The post 11 minutes, 1,900 seats, and not 1 for me: when accessible seating feels anything but accessible appeared first on A Couple Takes on MS.

Dan recently faced one of those moments when he needed hernia surgery. It wasn’t optional, and it wasn’t related to his MS.

But like so many medical decisions, it came with a price tag that forced us to pause. Not because of the care itself, but because of the money it required before the surgery could even happen.

Even with insurance, he was still asked to pay thousands of dollars upfront.

Yes, we made it work. But Dan and I couldn’t ignore the bigger question: what happens to people who can’t? What happens when necessary care clashes with financial reality?

That experience led me to encourage Dan to share his story when our MS Director of Advocacy, Anna Meyer, reached out to activists about submitting testimony for a Michigan House Health Policy Committee hearing.

The committee was reviewing Michigan Senate Bills 449 – 451, legislation that would require hospitals to create financial assistance programs and limit how medical debt is reported to credit agencies.

What followed wasn’t just about one procedure. It was about a reality many people are quietly living every day.

For many people living with Multiple Sclerosis, this kind of financial strain isn’t unusual. It’s part of a much larger reality tied to the cost of chronic illness.

This is the testimony he submitted:

To Chair VanderWall and members of the House Health Policy Committee,

My name is Dan Digmann, and I live in Michigan within the districts of State Senator Roger Hauck and State Representative Jerry Neyer. As someone living with Multiple Sclerosis—a chronic and often costly disease—I am writing in support of Senate Bills 449 – 451 and House Bills 5254 – 5255, which would require hospitals to implement financial assistance programs and prohibit medical debt from negatively impacting consumer credit reports.

Earlier this year, I underwent hernia surgery. Although I have health insurance through my employer, I still was required to pay $4,000 out of pocket before the procedure could happen. Like many people, I did not have that amount readily available. To move forward with necessary care, I had to put the expense on a credit card and transfer the balance to an interest-free card, hoping to pay it down before interest begins.

While this expense was not directly related to MS, it reflects a broader reality. Living with a chronic condition already brings ongoing and unpredictable medical costs, from medications to specialist care. Taking on unexpected debt for one procedure reduces my ability to manage future healthcare needs. It creates a compounding effect, where one necessary decision today can make the next one harder or impossible.

I was fortunate to have some time to plan for this cost. Many people do not. If this had been an emergency, the financial pressure and the consequences would have been even greater.

Medical debt is not the result of poor financial choices. It often is the result of doing exactly what patients are supposed to do: seeking care when it is needed. When that debt affects a person’s credit, the consequences extend far beyond healthcare, impacting financial stability, housing, and opportunity.

Legislation like Senate Bills 449 – 451 and House Bills 5254 – 5255 is essential because it recognizes this reality. Requiring financial assistance programs and preventing the use of medical debt in credit reporting are practical steps to protect individuals and families from long-term harm caused by medical necessity. If I had been in a situation where financial assistance, like that outlined in SB 449-451, had been available, I could have avoided taking on not only medical debt, but standard debt.

Thank you for your time and consideration.

Sincerely,
Dan Digmann

Moving forward in controlling medical debt

Dan and I know that we are not alone in this experience. In fact, Anna also submitted a letter of testimony, as did our friend and fellow Michigan MS activist Fox Rigney. We also just had a conversation about affordable healthcare in our podcast episode with MS activist Briana Landis.

Too many people are carrying the weight of medical debt while already carrying the weight of illness, recovery, and uncertainty. Sharing Dan’s letter is important to us because, sadly, stories like his happen every day.

Our hope is that by speaking up and by supporting legislation like this, we can help create a future where living with Multiple Sclerosis doesn’t also mean living with overwhelming medical debt.

Visit the Become an MS Activist website to learn how to get involved in MS advocacy through the National Multiple Sclerosis Society.

The post The price of healing should not be debt appeared first on A Couple Takes on MS.

Dan taped this makeshift sign to the wall of our dining room a few days before his hernia surgery on January 22. He intended to motivate us for his recovery as well as for the goals we set for the New Year.

The paper isn’t fancy, but the question is important. And real. It says so much…asks so much. So much so that Dan also taped up a similar sign in our bathroom.

Yes, the signs were meant to guide us through his surgery and recovery, but I’ve found myself using them to pursue a personal goal that affects Dan and me.

Dan knows I have always wanted to lose weight. That has been my forever wish since we met in 2002.

 I have always wanted to be smaller. To weigh less. For both of our sakes. He is my primary caregiver, and I am the person whose 51-year-old body is worn down from carrying an extra 50 pounds. My knees, especially, are fed up.

They ache and throb with pain when I lock them, as is necessary when I stand to transfer, and now there is sometimes discomfort even while lying in bed. I do not remember ever being conscious of my knees, but I often think about them throughout the day. Losing weight certainly would help lighten their load.

So once again, I see the wall and ask, “How is what I am doing going to get me where I want to go?”

Because the truth is, I do want to lose weight. Not because of a number on a scale or an image in a mirror, but because I want relief. I want to make this body easier to live in. I want to make things easier on Dan, whose role as my caregiver—something we’ve talked openly about in our MS caregiving experiences—is already so much to carry.

I want more time—good time—with the person I love.

And yet, living with Multiple Sclerosis means nothing is ever quite that simple.

My body doesn’t always cooperate. What feels possible one day can feel out of reach the next. Progress doesn’t come in straight lines, and effort doesn’t always lead to the outcome I expect.

Some days, rest is the only right choice.

Anyone reading this can probably understand what I mean. You know how you feel so good while you are being active, like exercising or cleaning the house, that you go ahead and overdo it, and you pay for it the next day? One good day of activity can lead to two needed days of rest.  

So I look at that question on the wall differently.

Not as a command, but as a conversation.

How is what I’m doing helping me move forward, not just toward a smaller body but toward a more sustainable life? Toward less strain on my knees, yes, but also less pressure on my spirit?

Because living with MS changes what progress looks like.

Maybe progress is:

• Listening to my body instead of pushing through
• Letting go of timelines that don’t fit this reality
• Choosing consistency where I can, and grace where I can’t

Because maybe “where I want to go” is about more than losing weight.

Perhaps it’s about caring for this body—this unpredictable, sometimes frustrating, still very much mine body—in a way that gives both Dan and me a little more ease. A little more energy. A little more life inside the life we already have.

The paper is still on the wall, but the question feels different now. Less like pressure and more like permission. And maybe this is what getting closer actually looks like now.

The post MS & weight loss: A different kind of progress appeared first on A Couple Takes on MS.

Does this ever happen to you?

Moments like that—those little lapses in memory—happen to everyone, but they can feel a little heavier when you’re living with Multiple Sclerosis.

The attention quickly shifts. You begin wondering if it’s an unfortunate side effect of the disease. If something is changing. If something is getting worse.

And then comes the question: “Is this the MS or is it just something that happens to everyone?”

It’s not always easy to tell, and maybe the not knowing is what makes it stick.

Moments like this happen more often than Jennifer and I would like to, and we’ve talked about that tension before, especially when it comes to cognition and forgetfulness with MS. Check out our conversation about it in our podcast episode Taking on cognition, forgetfulness & MS.

Over time, Jennifer and I have realized that not every moment needs to be fixed.

Sometimes it’s just a pause. Sometimes it’s a glance at each other. Sometimes it’s letting go and moving forward.

This idea has been on my mind lately, to the extent that I spent more time reflecting on it in a recent article with MS Focus.

Read the full article here: Evaluating when forgetfulness is MS or simply being human.

Some days, it’s MS. Some days, it’s just life.

Jennifer and I, along with so many others living with Multiple Sclerosis, are learning to find our way in that space in between.

The post Making sense of moments you can’t fully explain with MS appeared first on A Couple Takes on MS.

Dan is taking me to the dentist. No big deal, right? Especially because—and not to brag—I brush and floss like it’s my job.

But I am nervous.

Not because of cavities or X-rays or even that too-pointy scraper.

I’m nervous because I haven’t had to make that tricky transfer into the dental exam chair since Dan’s hernia surgery earlier this year (we’ve been navigating it for months now).

What once was routine now feels like a really big deal.

Dan is almost fully recovered. We’re getting back into our regular, day-to-day life. But something about this transfer is getting in my head.

This transfer requires a lot from both of us.

Timing. Strength. Trust. My legs cooperating. His body holding up. Both of us remembering how we used to do this without thinking.

Now we are thinking. About everything.

In my mind, the space suddenly feels smaller than it used to. My power wheelchair seems bigger, like it takes up more room than before.

My hygienist, Jodie, and my dentist, Dr. Bever, both run such efficient schedules. It feels like there’s no room (figuratively or literally) for a botched transfer. Yet hesitation is exactly what I feel.

Because Dan and I are out of practice.

Out of shape, too, if I’m being honest. Deconditioned in ways that don’t show up on the surface but make themselves known in moments like this.

Like my sore, cranky right knee. It is sore from sitting in a wheelchair for the past 24 years, but the soreness was exacerbated by my inactivity and lack of standing while Dan recovered. My knee seems to ache at the worst possible times, adding one more layer of uncertainty to something that already feels like a careful balancing act.

Ugh.

I know we can do this. We’ve done harder things. So many harder things.

But that doesn’t stop the nerves from creeping in anyway.

Because sometimes it’s not the big, dramatic challenges that shake you.

It’s the small, everyday moments that suddenly aren’t so small anymore.

And tomorrow, we’ll figure it out. Like we always do.

Update:

We did it! Smooth transfer. Deep breath.

The post This routine dentist appointment should be easy appeared first on A Couple Takes on MS.

‘I didn’t set out to become a caregiver.’

Like a lot of people, I stepped into the role of a caregiver because it was needed. Because it was part of loving someone. Quite honestly, there wasn’t another option.

My wife, Jennifer, lives with Multiple Sclerosis. So do I.

We are grateful for the professional caregiving support Jennifer receives through the MI Choice Medicaid Waiver program. Her very dependable caregiver comes each weekday to help with Jennifer’s activities of daily living as I continue working full time. Still, most of what keeps our life moving forward happens at home through me.

This is unpaid family caregiving.

It’s not something that gets announced. It just becomes part of your day. Part of your routine. Part of how you show up.

I didn’t really think much about it. I just assumed this was what you do when you love your spouse. Your parent. Your child.

Over time, though, I’ve started to see caregiving differently.

We tend to think of independence as doing everything on your own. But that’s not what independence looks like for Jennifer and me. In our world, caregiving actually is what makes independence possible.

It’s what helps Jennifer to stay engaged, keep contributing, and to live a full and connected life.

When the system falls short

This shift in my perspective didn’t happen all at once. It became clearer through experience, especially during a recent stretch when I physically couldn’t do what caregiving required of me.

I had hernia surgery in January, and for six weeks, I wasn’t allowed to lift more than 20 pounds. That meant I couldn’t safely help Jennifer with transfers.

We did what we were supposed to do. We requested additional caregiver support. We were grateful for the small increase in hours, but it wasn’t the around-the-clock care that Jennifer receives when I am fully healthy.

Again. Unpaid family caregiving.

Even though we were approved for the additional 10 hours of caregiving each week during my recovery, when temporarily assigned caregivers didn’t show up—which happens more often than people might expect—we were left figuring things out in real time.

That experience changed how I think about caregiving. Because in those moments, it became really clear that what looks like a private family responsibility is actually something much bigger.

There are more than 50 million family caregivers in the United States, and most of them are unpaid. Together, they provide an estimated $600 billion in care each year—care that makes it possible for people to remain in their homes and stay connected to their communities. In fact, family caregivers provide the vast majority of long-term care in the United States.

Like Jennifer and me, many of those caregivers are filling in the gaps every single day, adjusting schedules, solving problems, and doing whatever is needed to keep life moving forward. Not because they’re trained for it. Not because they’re paid for it.

But because someone they love needs support.

Recognizing the worth of family caregivers

We often talk about infrastructure in terms of roads, hospitals, or systems that people can see.

Caregiving is infrastructure, too, even if we don’t call it that.

It’s what offers a priceless quality of life that people living with disabilities, chronic illnesses, or age-related needs are looking for to remain in their homes and communities. It’s what holds things together when formal systems fall short.

And yet, most of it happens quietly behind closed doors.

One of the most important things I’ve had to learn is that for as much as caregiving is an act of love, it also is an act of labor.

Yes, both can be true at the same time.

Caregiving means being present for someone you love. It also means lifting, coordinating, advocating, adjusting, and sometimes carrying more than expected.

On average, family caregivers spend nearly 24 hours per week providing care, often on top of full-time jobs and other responsibilities. It’s physical. It’s emotional. It’s constant.

Still, most of it goes unseen.

Recognizing caregiving as work doesn’t take anything away from the love. If anything, it gives a fuller picture of what that love looks like in action.

From the outside, caregiving can look seamless. From the inside, it’s anything but.

It’s unpredictable. It changes day to day. It asks you to balance your responsibilities, your energy, your time, and sometimes your own health, all while still showing up for someone else.

In fact, many caregivers report high levels of stress, and a significant number are managing their own health conditions—don’t forget that I’m navigating MS myself—while providing care.

There isn’t really an “off” switch. It just becomes part of how you move through your life.

The more I’ve lived this, the more I’ve come to believe that our country needs to change the way it views caregiving. Not as something families quietly manage on their own, but as essential work that deserves to be seen, understood, and supported.

After all, caregiving isn’t rare. It’s not something happening somewhere else. It’s happening every day—in homes like Jennifer’s and mine and in homes all around us.

I didn’t set out to become a caregiver. Neither of us did. We set out to show up for each other.

And somewhere along the way, I’ve come to understand that showing up day after day, in ways both big and small, is what makes everything else possible.

The post A caregiver’s perspective on selfless love and unseen labor appeared first on A Couple Takes on MS.