RealTalk MS

Patient-centered research is based on an understanding that patients themselves have unique perspectives that can help to mold, change, and improve the work of finding answers to clinical questions. My guest on the podcast is Laura Kolaczkowski, the co-Principal Investigator for iConquerMS. We're talking about the impact this people-powered research network is having on MS research, and how the first ever patient-driven MS drug development project came about. We'll also help you...

Caregiving carries a lot of challenges. And for some people, it can feel overwhelming. So, what are the things that make being a caregiver for someone living with a chronic illness like MS so challenging? We're kicking off National Family Caregivers Month with my guest, Dr. Amy Sullivan, Director of Behavioral Medicine, Research and Training at the Mellen Center for Multiple Sclerosis at the Cleveland Clinic, and we're talking about how to best navigate some of the challenges that go...

Cognitive dysfunction can profoundly affect people living with MS, yet it's frequently overlooked and left untreated. That's why the National MS Society convened a working group of world-class experts to explore how cognitive dysfunction was being assessed and to develop a set of guidelines designed to improve the process of cognitive screening and management in MS care. My guest is Dr. John DeLuca, the Senior Vice-President of Research & Training at the Kessler Foundation, and the...

We're 2 weeks away from an event that's going to have an impact on every person in the United States who's living with MS...or any other chronic illness. Because in 2 weeks time - on November 6th - an election's taking place, and healthcare is on the ballot. Maybe not directly...maybe not explicitly...but make no mistake, the choices that voters in America make on election day are going to have a huge affect on our access to healthcare, the cost of healthcare, and the protection that exists...

I'm back from Berlin, Germany, where I attended the 34th annual ECTRIMS Congress, and the single biggest challenge that I faced during the 3-day conference was trying to decide which sessions I wanted to attend. With 80 live presentations, more than 1,000 poster presentations, and any number of meetings and even casual conversations that seem to pop up everywhere, it's challenging trying to take it all in. Although ECTRIMS has ended, there's still a bit more to report from the conference, so...

It's the 3rd and final day at ECTRIMS in Berlin! Today, we're taking you to a special documentary screening that we've been keeping under wraps! (You can watch the trailer as part of the "Bonus" content in the RealTalk MS app!) We're talking about the amazing changes in almost every aspect of how we look at MS that have all taken place within just 25 years. We'll walk you through a couple of the scientific sessions that really stood out earlier today. And we'll tell you how you can find...

It's Day 2 at ECTRIMS in Berlin! Today, we're talking about the Shift.ms booth in the Exhibition Hall, where you can take part in a virtual reality demonstration of what it might be like to accomplish even the simplest tasks if you're living with MS. And if you've downloaded the RealTalk MS app from the Apple App Store for iOS or the Google Play Store for Android, I hope you enjoy the bonus video of the virtual reality demonstration that I shot on the Exhibition Hall floor. I wanted to...

Greetings from Day 1 at ECTRIMS in Berlin! Today, we're talking about pharmaceutical company Novartis seeking approval from the U.S. Food & Drug Administration and the European Medicines Agency for siponimod, a once-daily oral medication that significantly reduces disability progression for people living with secondary progressive MS. This is important news, as 80% of the people living with relapsing remitting MS are eventually diagnosed with secondary progressive MS. And currently,...

This week, the European Committee for Treatment and Research in Multiple Sclerosis is hosting the ECTRIMS 2018 Congress in Berlin, Germany. It's the largest MS conference in the world. And you can look forward to special episodes of RealTalk MS direct from ECTRIMS, on Wednesday, Thursday, and Friday, October 10th, 11th, and 12th! You'll get the news, hear the interviews, and you'll be the first to get the research updates and announcements as they're being made at the largest MS...

A lot of people visit the RealTalk MS website to listen to each podcast episode. I wanted to make that easier to do, so last week I released the RealTalk MS app for iOS or Android smartphones and tablets. The app will always have the latest episode of RealTalk MS cued up and ready for you to listen to, and it also lets me share all kinds of bonus content with you. Head to the Apple App Store to download the iOS version of the app, or the Google Play Store to download the Android version...

The RealTalk MS podcast is celebrating its one-year anniversary this week! And to kick off our 2nd year, I'm launching the RealTalk MS app! You can download the iOS version of the app from the Apple App Store, and you can download the Android version from the Google Play Store. The app is free, and it's the very best (and easiest!) way for you to connect to the podcast. And the RealTalk MS app will allow me to share free bonus content with you. So in the weeks and months ahead, I'll be...

I spent this past weekend attending the iConquer MS Leadership Summit in Boston. iConquer MS is a people-powered research network created by the Accelerated Cure Project for MS. Instead of just asking people with MS to provide data, iConquer MS is driven by people living with MS, and it represents a new paradigm of building collaborative partnerships to solve big healthcare questions. This past spring, I had an in-depth conversation with Dr. Robert McBurney, CEO of the Accelerated Cure...

My guest on the podcast is Mitch Sturgeon. Mitch is an award-winning blogger, and with the publication of his book, Enjoying the Ride: Two Generations of Tragedy and Triumph, Mitch is a published author, as well. In 2001, Mitch was diagnosed with Primary Progressive MS. He was 35 years old at the time, and that was the same age that Mitch's mother was when she took a fall that left her a quadriplegic. Mitch's book is more than just a reflection of his MS journey. It's a story about a...

MS Research Australia has published a report titled, Health Economic Impact of Multiple Sclerosis in Australia 2017. The report provides a detailed snapshot of the economics behind MS, looking at employment, quality of life issues, and even calculating the cost per person living with MS in Australia. The report concludes with some powerful recommendations for future steps. My guest is Dr. Lisa Melton, Head of Research at MS Research Australia, and we're talking about what this report is...

Part of the unpredictability of multiple sclerosis is that it can attack in so many different ways. MS can impact your physical well-being, your emotional well-being, your functional abilities and your quality of life. And if your response to MS is to be seen by a single healthcare professional, some of those many aspects of MS can end up being overlooked and, sometimes, even unrecognized. And so they go untreated. That's why the best approach to treating MS is a team approach. My guest...

Shawn Feliciano was diagnosed with MS in 2009, and in 2012, she decided to challenge herself while raising awareness about MS by going on a Big Hike -- hiking 817 miles, from Utah to Arizona. Shawn's Big Hike may have been the perfect metaphor for living with the challenges of MS, and we're talking about having the resilience to take on a challenge, no matter what your personal Big Hike might be. We're also talking about a new study that demonstrates why it's in your best interest to...

Elizabeth Jameson is an artist who specializes in creating a bridge between art and neuroscience. Since being diagnosed with MS, Elizabeth has transformed her brain MRI scans into remarkable and provocative images that challenge how we view the brain, disability, and illness. In addition to creating her amazing artwork, Elizabeth is an ePatient Scholar and advisor to Stanford Medicine X, and she's written extensively about patient-centered healthcare, design, and the arts. This week,...

You've heard the statistic before -- 50% of the people living with MS will be diagnosed with depression. And research has shown us that some of the most troubling MS symptoms, including fatigue, cognition, and even physical disability, are all made worse by depression. Unfortunately, among people living with MS, depression is often overlooked, undiagnosed, and left to only get worse. So imagine an app that will tell you when you're heading toward depression before you even feel it. That's...

We take advantage of digital tools every day to make our lives easier. But when it comes to managing our health, there's still a long way to go. That's why the MS Society in the UK commissioned a report titled "Improving Care for People with MS: The Potential of Data & Technology". That report has just been published, and we're discussing some of the observations and recommendations contained in this remarkable report with my special guest, Michelle Mitchell, CEO of the MS Society in the...

The caregiver's journey doesn't always get paid the proper amount of attention until a family caregiver finds themselves feeling isolated, overwhelmed, drained, and depressed. But it doesn't have to come to that. My guest is Dr. Kate Lorig, lead author of Building Better Caregivers: A Family Caregiver's Guide to Reducing Stress and Staying Healthy. And we're talking about how to go about building better caregivers. We're also talking about a new MRI technique that may enable doctors...