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.

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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.

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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

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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.

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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.

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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.

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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

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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.

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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.