RealTalk MS

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...

My guest this week is Dr. Rhonda Voskuhl, Director of the Multiple Sclerosis Program at the David Geffen School of Medicine at UCLA and the Jack H. Skirball professor of Multiple Sclerosis Research. Dr. Voskuhl is responsible for first identifying that understanding the gender differences in the disease is an important part of understanding MS. This is one of my favorite interviews, and it's packed with great information. We're also talking about the potential of data and technology to...

Using cannabis to treat MS symptoms has become a hot topic. And thanks to social media, a lot of opinions about cannabis and MS are posted as if they're facts...and that's not always the case. So, we're talking about cannabis and MS in this episode of RealTalk MS. We'll try to demystify it a bit and we'll give you an idea of what some of the research is telling us. We'll talk about which MS symptoms cannabis might be good for...and which ones it might not be good for. We're also...

When you google the phrase "stem cell therapy for MS", it can feel like you fell into a black hole of conflicting information, misinformation, and dodgy information that can be full of promises designed to speak directly to someone who is anxiously and sometimes desperately looking for a miracle cure for a debilitating condition. And there's also plenty of good, credible information available online. But how do you go about separating the wheat from the chaff? We're going to try to jump...

We talk a lot about MS research. And when we do, we talk about the "investigators"...the experts...the scientists in the laboratories who are expanding our collective knowledge about MS. But who are these folks? How do you become an "investigator"? And why does someone decide that they want to make MS research their professional focus? My guest on the podcast is Dr. Elisabeth Mari, Director of Biomedical Research for the National MS Society. Dr. Mari takes us behind the scenes and walks...

MS Activist Marques Jones is running for public office in his home state of Virginia. Marques and I sat down to discuss how his role as an MS Activist led to his candidacy, and how his MS diagnosis has continued to inform his business life and his political life. We're also talking about the existential threat that now exists for people with pre-existing medical conditions in the U.S., how the MSAA can provide financial assistance for your MRI exam, how Ocrevus may delay the need...

Experts estimate that depression affects about 50% of the people diagnosed with MS. And, left unchecked, depression can take your vibrant, colorful world and re-draw it in somber shades of gray. If there's good news about depression, it's that it can be treated. In this special Vacation Edition of RealTalk MS, we're going to revisit a really important conversation that I had last November with Dr. Amy Sullivan, Director of Behavioral Medicine, Research and Training at the Mellen Center for...

At the Consortium of Multiple Sclerosis Centers Annual Meeting, I learned about the Pediatric MS Alliance from Jill Blackburn. I met Dr. Miriam Franco and learned about the app that she's developed and you'll want to download. And I sat down with Dr. Rosalind Kalb and MS Activist Marques Jones to learn about MS Path 2 Care - a new set of educational modules designed to empower people living with MS to be active participants in their own care & treatment. We're also talking about a study...

I've invited a very special guest to talk about the subject that I've received -- by far -- the most requests to discuss on the podcast, and that's sexual function and MS. We're also talking about the International Progressive MS Alliance's future strategies, World MS Day, and we're giving away an Amazon Echo Dot! We have a lot to talk about! Are you ready for RealTalk MS? ____________ MS Conference Update :51 International Progressive MS Alliance Announces Future Strategies...

The RealTalk MS podcast is coming to you from the Sheraton Centre Hotel in Toronto, Canada, where the International Progressive MS Alliance is holding its 3rd Scientific Congress. The theme of the event is Making a Difference Through Rehabilitation & Symptom Management. Yesterday's session included a presentation on how some of the insights from stroke rehabilitation can be transferred to MS rehabilitation. There were detailed presentations on some of the key areas impacting translational...

Today -- and every day this week -- the RealTalk MS podcast is coming to you from the Sheraton Centre Hotel in Toronto, Canada, where the International Progressive MS Alliance is holding its 3rd Scientific Congress. The theme of the event is Making a Difference Through Rehabilitation & Symptom Management. The first day of the Scientific Congress featured amazing presentations, insightful panel discussions, world-renowned MS researchers, and even a couple of robots! Topics included how...

Today -- and every day this week -- the RealTalk MS podcast is coming to you from the Sheraton Centre Hotel in Toronto, Canada, where the International Progressive MS Alliance is holding its 3rd Scientific Congress. The theme of the event is Making a Difference Through Rehabilitation & Symptom Management. In today's podcast, you'll hear from a renowned progressive MS researcher who is leading an international team of experts in a 3-year research study. You'll also hear from a trio of...