If you're a regular listener, you know that I rely on the RealTalk MS listener community to let me know which topics you'd like to hear about on this podcast. A few years ago, in episode 264, listener Dawnia Baynes did a podcast takeover, and interviewed me. Since then, I've heard from a bunch of you who, for some reason, want to hear more about me. So, when listener Kyra Millich asked if she could interview me, it felt like it was time. In today's episode, you'll find out what I like to do when...
Aug 26, 2024•42 min•Season 7Ep. 365
Getting an MS diagnosis is not always the quick, straightforward process we'd like it to be. For some people, the process can drag on for years. But getting that diagnosis only happens when you and your primary care physician recognize that something's going on. It might be a sudden vision issue. Maybe it's unexplained tingling in an arm or leg. Or maybe it's something more acute that gets your attention. A wide variety of signs could point to MS, but they could also point to other health condit...
Aug 19, 2024•30 min•Season 7Ep. 364
For some people, getting in their car and heading for, well, anywhere represents freedom and independence. For others, it's a way to get to their jobs, get to their medical appointments, get the kids to school, and run necessary errands. MS can change all of that. Occupational Therapist and Certified Driver Rehabilitation Specialist Jenny Nordine joins me to discuss how to preserve your independence while protecting yourself and the people around you when you're driving with MS. You'll also meet...
Aug 12, 2024•33 min•Season 7Ep. 363
Integrative medicine brings conventional and complementary treatments together in a coordinated way. This approach to health and wellness represents a growing trend across the United States, especially among people who live with a chronic disease like MS. Dr. Lynne Shinto joins me to explain what integrative medicine is and how to safely incorporate complementary treatments into your MS care plan. We'll also tell you about study results that show how the common cold, flu, or a urinary tract infe...
Aug 05, 2024•30 min•Season 7Ep. 362
Less than two weeks ago, the National MS Society announced the appointment of Dr. Tim Coetzee as its new President and CEO. The MS Society's board chair, Peter Porrino, commented, " Tim is a trusted voice of the global MS community, a highly respected scientist, and we are excited for him to bring his transformative leadership to drive us into our next era to achieve a world free of MS ." I thought it was important for everyone in the RealTalk MS listener community to hear from Tim and learn fir...
Jul 29, 2024•30 min•Season 7Ep. 361
It's hard to imagine any area of our lives that hasn't been transformed by digital technology. That's certainly true for healthcare in general and MS diagnosis and treatment in particular. Dr. Riley Bove joins me to discuss the role that digital technology already plays in the diagnosis and treatment of MS and to share a preview of what's coming next. The National MS Society has named its new President and CEO. We're sharing the details! We'll tell you about some of the benefits that are being o...
Jul 22, 2024•31 min•Season 7Ep. 360
As Harvard Fellow Dr. Nara Michaelson treated women who had been recently diagnosed with MS, she recognized they shared characteristics that she had observed in victims of violent domestic abuse. Dr. Michaelson's observation led her to write The Unraveling , an essay that highlights the fear that can accompany the uncertainty of living with MS. Dr. Michaelson joins me to discuss the experiences that led to her award-winning essay and to share resources that can help maintain your emotional healt...
Jul 15, 2024•31 min•Season 7Ep. 359
The inequities associated with gaining access to quality healthcare are often discussed, and my guest this week has taken steps to address them. Dr. Jaime Imitola and his team at UCONN Health have created a tool called VISIBL-MS, a bilingual framework designed to increase doctors' and patients' awareness of the early signs of MS. We'll also share the results of a study that clearly illustrate progression independent of relapse activity (PIRA). We'll tell you about a small study that showed a pos...
Jul 08, 2024•33 min•Season 7Ep. 358
When it comes to living your best life when you're living with MS, the first step is to make smart lifestyle choices. Maintaining a healthy lifestyle doesn't require pills, injections, or infusions. And making smart lifestyle choices can make a real, measurable difference in your quality of life. Joining me to talk about the benefits of maintaining a healthy lifestyle and share some tips and strategies for living your best life when you're living with MS is Dr. Lisa Doggett, a family and lifesty...
Jul 01, 2024•29 min•Season 6Ep. 357
Over the course of her 39-year career with the National MS Society, including the past 13 years as its President and CEO, Cyndi Zagieboylo has been a driving force behind major initiatives that have fundamentally changed the MS treatment and research landscape. Creating a world where cures for MS are now within reach, Cyndi has led the work to make living with MS better today than it's ever been. On July 1, Cyndi is retiring from her remarkable career at the National MS Society. I had an opportu...
Jun 24, 2024•33 min•Season 7Ep. 356
Research is the engine that drives the future. And participating in MS research is not only vital to improving scientists' understanding of multiple sclerosis, it's also empowering. And the really good news is that you can participate in MS research from the comfort of your own home. My guest this week is the Managing Director of the North American Research Committee on Multiple Sclerosis, Dr. Robert Fox. And we're taking a deep dive into the NARCOMS patient registry. We'll also tell you about t...
Jun 17, 2024•28 min•Season 7Ep. 355
Two weeks ago, thousands of clinicians, nurses, physician's assistants, rehabilitation experts, and others traveled to Nashville to attend the Consortium of Multiple Sclerosis Centers 38th Annual Meeting. This is Part 2 of our coverage from that meeting. In this episode, we're sharing our conversations with some of the experts who were at the meeting to present their research. You'll hear the National MS Society's Executive Vice President for Advocacy and Healthcare Access, Bari Talente, share h...
Jun 10, 2024•40 min•Season 7Ep. 354
Last week, thousands of clinicians, nurses, physician's assistants, rehabilitation experts, and others traveled to Nashville to attend the Consortium of Multiple Sclerosis Centers 38th Annual Meeting. Welcome to Part 1 of our coverage from that meeting. In this episode, I'm talking with Dr. Kathy Zackowski, Associate Vice-President for Research at the National MS Society, and Dr. Zackowski is sharing some of the presentations that caught her attention. Next, you'll hear my conversation with Dr. ...
Jun 03, 2024•36 min•Season 7Ep. 353
May 30th is World MS Day, and we're taking this opportunity to look at some of the challenges faced by people with MS around the world. Global economics and the peculiarities of different healthcare systems make fundamental issues like access to quality healthcare and affordable MS medications difficult for many and impossible for some. U.K. journalist and MS activist Rachel Horne joins me for a freewheeling conversation focused on the broad range of challenges that people with MS face every day...
May 27, 2024•28 min•Season 7Ep. 352
We've reached a moment in time when it seems impossible to avoid at least some level of stress in our lives. We also know that stress has been shown to make MS symptoms worse and even trigger relapses. We can't eliminate all the stress in our lives, so learning how to manage and minimize stress is an important part of living well with MS. This week, Dr. Grace Tworek, a Clinical Health Psychologist at the Mellen Center for Multiple Sclerosis at the Cleveland Clinic, joins me to talk about best pr...
May 20, 2024•29 min•Season 7Ep. 351
There are more than 20 disease-modifying therapies available to treat MS today. Some are considered high-efficacy, some are considered moderately effective, and each has its own risk profile and side effects to consider. So, how do you choose? How much homework should someone living with MS do? Where should you look for reliable information? And what if you and your neurologist don't necessarily agree? Joining me to talk about your role when it comes to choosing the right DMT through shared deci...
May 13, 2024•35 min•Season 7Ep. 350
As we age, our bodies undergo biological changes. Our immune system changes. Our brain changes with age. Our cognitive abilities change, as do our physical abilities. These changes impact everyone. But these biological processes may impact people with MS differently. And MS may impact these biological processes differently. Just a couple of weeks ago, the International Advisory Committee on Clinical Trials in MS brought together 100 top experts for a 3-day workshop dedicated to exploring how the...
May 06, 2024•44 min•Season 7Ep. 349
As people age, their immune systems change. Their level of physical and cognitive reserve changes. They often develop additional health issues. They frequently experience changes in their mobility. And these are people who aren't living with MS. When you combine the health issues related to aging with the health issues that are related to MS, you end up with a sum that is exponentially larger than its parts. And when you consider that there are more people living with MS who are over the age of ...
Apr 29, 2024•30 min•Season 7Ep. 348
Lower levels of Vitamin D have been associated with a higher risk of developing MS and an increase in MS disease activity. And, for years, scientists have worked to better understand the relationship between Vitamin D and MS. Joining me to talk about the role that Vitamin D plays in MS is Dr. Ellen Mowry. Dr. Mowry is a Professor of Neurology and Epidemiology, and the Co-Director of the Multiple Sclerosis Precision Medicine Center of Excellence at Johns Hopkins University. Dr. Mowry is also one ...
Apr 22, 2024•34 min•Season 7Ep. 347
In past episodes of this podcast, we've discussed disparities in healthcare. We've looked at evidence that shows members of historically underserved communities who are living with MS can face a more severe disease course. We've looked at studies that have shown some members of these racial and ethnic minority groups don't do as well on disease-modifying therapies, and their MS progresses more quickly. It's often been speculated that the reason behind these disparities is based on genetics -- th...
Apr 15, 2024•33 min•Season 7Ep. 346
MS affects women almost 3 times more frequently than it affects men, which makes understanding how MS may impact other women's health issues a priority. Dr. Rhonda Voskuhl and Dr. Anna Shah join me as we take a deep dive into both the research and clinical side of how MS affects women's health and how those other health issues may affect MS. Dr. Shah is an Associate Professor of Neurology and Associate Clinic Director of Outpatient Neurology at the University of Colorado School of Medicine. Dr. ...
Apr 08, 2024•34 min•Season 7Ep. 345
If you're a regular listener, you've probably heard me say that the pace of scientific discovery is moving faster than ever before. Or you may have heard the National MS Society remind us that we've seen as many advances in MS research in the past 5 years as we have in the previous 70 years. Have you ever wondered why? A major driver of this acceleration of discovery is the technology that allows scientists to analyze massive amounts of information looking for relationships or identifying charac...
Apr 01, 2024•34 min•Season 7Ep. 344
March 28th is Progressive MS Day, a day that offers an opportunity for people affected by MS, patient advocates, healthcare providers, governments, and industry to share stories online and show their support for people living with progressive forms of MS. My wife, Jeanne, lived with progressive MS for 23 years, so this day holds a special significance for me. Joining me to talk about what Progressive MS Day is all about is my friend, Kevin Reid. Kevin was diagnosed with MS in 2002 and, for the p...
Mar 25, 2024•30 min•Season 7Ep. 343
We often discuss the results of MS research studies on this podcast. In order to get to those results, people living with MS have to step up and volunteer to participate. This week, you'll meet Chiquita Shepard-Knight and Earl Sneed, two participants in the TEAAMS study. Chiquita and Earl will discuss how they discovered the TEAAMS study, what motivated them to get involved, what their experience as study participants was like, and what the results of the study were for them. We'll also take you...
Mar 18, 2024•29 min
Vision impairment is a key symptom of multiple sclerosis. In fact, many people experience optic neuritis as the very first sign of MS. People living with MS may also experience other vision-related issues including internuclear ophthalmoplegia, diplopia, nystagmus, oscillopsia, and reading fatigue. Dr. Shiv Saidha joins me as we take a deep dive into strategies for navigating MS-related vision issues while managing and optimizing your vision. Dr. Saidha is a professor of neurology in the Divisio...
Mar 11, 2024•31 min•Season 7Ep. 341
When people living with MS think about rehabilitation, they often think of physical therapy. And, while physical therapy is an important part of MS rehabilitation, our conversation today goes far beyond physical therapy. Doctors Deborah Backus and Brad Willingham, from the Shepherd Center, join me as we take a deep dive into next-level potentially life-changing rehabilitation tools for people living with MS. Dr. Backus is the Vice-President of Research and Innovation at the Shepherd Center. She'...
Mar 04, 2024•31 min•Season 7Ep. 340
A couple of terms have found their way into the MS lexicon and they have left some people living with MS feeling confused and even frightened. If you've been diagnosed with relapsing-remitting MS and you've always assumed that disease progression only occurs at the time of a relapse, you may be wondering what progression independent of relapse activity , or PIRA , means and how it may or may not impact your MS journey. And if you are someone whose MS seems relatively stable and well-managed, you...
Feb 26, 2024•30 min•Season 7Ep. 339
You've probably heard me say more than once that the things people affected by MS want most -- access to quality healthcare, affordable prescription medications, and funding for MS research -- are, to a large extent, all functions of public policy. The people who decide whether we get these things are our elected officials. That's why advocacy is so critically important. The National MS Society's Public Policy Conference gets underway on March 4th, and joining me with a preview of this year's co...
Feb 19, 2024•33 min•Season 7Ep. 338
We're all living longer and that includes people living with MS. And as they age, people with MS are asking new questions. Is there a need to stay on disease-modifying therapy after the age of 60? How do we know whether a new symptom is a symptom of MS or a symptom of aging? Does an additional age-related health condition make treating MS more difficult? Does treating MS make treating that new health condition more difficult? How can we best offset the social isolation that's often associated wi...
Feb 12, 2024•40 min•Season 7Ep. 337
When people living with MS find themselves unable to continue working due to disability, they turn to Social Security Disability Insurance (SSDI). And when they do, many are surprised to find the long, winding, sometimes confusing road that lies ahead. This week, disability law expert Jamie Hall joins me to demystify the process of applying for SSDI benefits. Jamie specializes in social security and long-term disability law. And he, literally , wrote the book for the National MS Society on apply...
Feb 05, 2024•40 min•Season 7Ep. 356
