RealTalk MS

More than half of the people living with MS report significant disruptions in their sleep and difficulty maintaining a consistent sleep schedule. Sleep-related problems can lead to additional health issues, not to mention an overall decline in quality of life and well-being. The Director of the Sleep, Health, and Wellness Lab at the University of Kansas Medical Center Department of Physical Therap...

One of the realities of living with MS is that you're often dealing with invisible symptoms. And because symptoms like numbness and tingling, fatigue, depression, vision issues, and pain aren't apparent to others, it can be hard for people around you to understand what MS is all about and, specifically, what you might be struggling with. Kathy Costello returns to the podcast to discuss how to best...

Dating can be tricky for anyone. And it doesn't get any easier if you happen to be living with MS. In addition to all the typical dating considerations, you also have to think about things like if, how, and when to disclose your MS. You want to make sure your dating activities are physically doable. That might mean no long walks on the beach when the temperature is soaring. It might mean no hikes...

Imagine that, using your smartphone, you log into a Zoom call from home. You connect with your MS specialist and, while you're chatting, an artificial intelligence-based system is analyzing biometric measurements that will enable your doctor to deliver or fine-tune an MS treatment plan that's been personalized to meet your exact needs. That's the vision driving NeuraLight, an early-stage company t...

In last week's episode, we looked at talking with kids about MS. This week, we'll visit the opposite end of the spectrum as Dr. John Corboy discusses some of the things you'll want to think about as you age with MS.  Dr. Corboy is a professor of neurology at the University of Colorado School of Medicine, and the Director of the Rocky Mountain Multiple Sclerosis Center at the University of Colorado...

Whether we adults admit it or not, kids see everything. That includes seeing a parent or other family member who's living with MS. And because kids don't have an understanding of neurological conditions, they use their imaginations to fill in the blanks. That can very quickly take them down a rabbit-hole that's far scarier than the reality of living with MS. So, when do you talk to your kids about...

Everybody remembers the day -- sometimes, even the moment -- when they were diagnosed with MS. And in that moment, you may not have known very much about living with MS, but you probably felt like everything was about to change. One of the most common emotional responses to MS is grief. Joining me to talk about the relationship between grief and MS, as well as share some specific steps and strateg...

When I began thinking about launching RealTalk MS, one of the first things I did was listen to other podcasts for the MS community. Five years ago, there weren't nearly as many podcasts focused on MS as there are today, but one of the podcasts I listened to was FUMS. And after listening to that podcast, I remember feeling inspired about moving forward with my plans for launching this podcast. Join...

Health disparities, systemic inequities, and discrimination often stand in the way of gaining access to MS care for members of the LGBTQ+ community. As we explore some of the obstacles faced by members of the LGBTQ+ community in accessing healthcare, we'll gain the clinician's perspective in our conversation with MS specialist, Dr. William Conte. We'll hear about the experiences of a queer trans p...

One afternoon during the Consortium of Multiple Sclerosis Centers Annual Meeting, I set up my equipment at the National MS Society's booth in the conference exhibit hall and recorded some conversations with a few old friends and a few new friends of the podcast. In this week's episode, we'll hear a couple of those conversations. Before I left for the conference, I had a chance to catch up with Dr....

In 2007, Tyler Campbell was a running back at San Diego State, looking forward to a real shot at a career in the NFL. Instead, Tyler's life was turned upside down by an MS diagnosis. For some people, that would have been the end of the story. For Tyler, it was only the beginning.  In this week's episode, Tyler Campbell talks about his transformational journey from the football field to becoming a...

Starting a family is a big step for anyone. And when you're living with MS and you're on MS medications along with other symptom management medications, planning a family creates a lot of questions about what's safe and what's not. Dr. Annette Langer-Gould, a clinician-scientist and MS specialist in the Kaiser-Permanente health system, joins me to answer questions about how to safely and successfu...

Think about how much faster, easier, cheaper, and less invasive it would be if MS could be diagnosed by a simple blood test.  Scientists have identified biomarkers that can be used to diagnose MS and even predict MS before someone experiences any symptoms. Biomarkers may even be used to predict MS progression before it occurs.  Joining me to discuss how biomarkers may change the way MS is diagnose...

When my wife was diagnosed with MS in 1997, the annual cost of her MS medication was $9,000. Today, the annual cost of that same medication is $110,000. We cannot allow the insanity associated with the cost of MS medications to continue. Joining me to discuss the impact of the outrageously high cost of MS medications -- and what each of us can do about it -- is the National MS Society's Vice-Presi...

For some, the journey to their MS diagnosis is relatively quick and straightforward. For others, it can be lengthy and convoluted, sometimes  taking years. Joining me to talk about some of the twists and turns that can pop up on the road to being diagnosed with MS is Dr. Michael Robers, a neurologist in the Multiple Sclerosis Program and an assistant professor in the Department of Neurology at Bar...

Planning for your financial future is good advice for everyone. But when you're living with MS, financial planning is an important part of the game plan for living your best life. Joining me to talk about the things you'll want to keep in mind as you develop your personal financial roadmap is Dick Bell, a professional financial advisor who has worked with more than 600 clients who are living with...

Living with MS is expensive. And if you're curious about how expensive living with MS is, why it's so expensive, and what can be done about it, then you're going to be interested in the results of a study that was commissioned by the National MS Society. Joining me to talk about what this study revealed and what it means to individuals and families affected by MS are Dr. Bruce Bebo, the Executive...

Mask mandates have mostly ended, and bars, restaurants, public buildings, and other businesses no longer require proof of vaccination. It looks like the COVID-19 pandemic is over. Except for the fact that we're seeing cases of the latest COVID subvariant continue to rise in cities across the country and around the world. So, how do we navigate this post-pandemic world? And if you happen to be immu...

I spent last week attending the American Academy of Neurology (AAN) Annual Meeting and in this week's episode of RealTalk MS, I'm sharing an overview of what I saw and what I heard. Each year at the AAN meeting, the American Academy of Neurology and the National MS Society award the John Dystel Prize for MS Research. Joining me on today's podcast is this year's recipient of the Dystel Prize, Profe...

Research has shown that hypnosis is an effective treatment for managing chronic pain, including pain associated with MS.  My guest, Dr. Mark Jensen, is a Professor and Vice-Chair of the Department of Rehabilitation Medicine at the University of Washington. Dr. Jensen has devoted his career to developing effective treatments for pain and is an expert on hypnotic interventions. We're also talking ab...

A decade ago, the International Progressive MS Alliance didn't exist. Today, it can be credited with changing the global conversation about progressive MS research, elevating the progressive MS research agenda and moving the work forward. A few weeks ago, the Alliance announced the details of an ambitious strategic plan that will guide their work over the next 3 years.  Joining me to talk about th...

The Pathways to Cures initiative is focused on stopping MS progression, restoring lost function, and ending MS forever. This bold initiative has already been endorsed by more than 20 MS research and patient organizations around the world. And now, the publication of the Pathways to Cures Research Roadmap has brought us to a pivotal moment in the history of MS research. Joining me in this episode o...

It's MS Awareness Week and my guest is Marti Hines. Marti is a successful event producer, entrepreneur, film producer, and director. She was diagnosed with MS in 2018, and Marti has been very transparent in sharing the highs and lows of her MS journey on her social channels.  Like so many people living with MS, Marti has an amazing energy and a seemingly endless supply of resilience. You're going...

If you're living with MS, there's a good chance that, at some point, you're going to deal with depression, cognitive issues, or both of these common MS symptoms. We're taking a deep dive into how these symptoms can impact your everyday life at home and at work with the author of Mind, Mood, and Memory: The Neurobehavioral Consequences of Multiple Sclerosis , Dr. Anthony Feinstein. We're also highl...

I've always believed that the things people affected by MS want most -- things like access to quality healthcare, affordable prescription medications, and funding for MS research -- are all functions of public policy. The people who decide whether we get those things are our elected officials at both the state and federal level. That's why advocacy is a priority. The National MS Society's Public P...