Jon Strum
RealTalk MS
Jon Strum cuts through all the jargon and breaks down the latest multiple sclerosis news. You'll meet the scientists who are creating tomorrow's MS treatments today. You'll hear from the experts discussing how the latest tweaks and changes to our healthcare laws will impact your MS treatment. And we'll be talking to the courageous MS warriors who are out there advocating on behalf of the MS community every day, as well as the men and women who are committed to living their best lives with MS and living their best lives as MS caregivers. If you're dealing with multiple sclerosis in your life --...
Where to listen?
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Episodes
Episode 358: VISIBL-MS with Dr. Jaime Imitola 08.07.2024 33:06
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 prog...
Episode 357: Living Your Best Life When You're Living with MS with Dr. Lisa Doggett 01.07.2024 28:51
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 strat...
Episode 356: A Final Conversation with National MS Society President and CEO, Cyndi Zagieboylo 24.06.2024 33:04
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....
Episode 355: The NARCOMS Patient Registry with Dr. Robert Fox 17.06.2024 28:29
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. Rob...
Episode 354: From the Consortium of MS Centers 38th Annual Meeting -- Part 2 10.06.2024 40:05
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 Nati...
Episode 353: From the Consortium of MS Centers Annual Meeting with Dr. Kathy Zackowski and Dr. Stephen Krieger 03.06.2024 35:42
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 shar...
Episode 352: World MS Day with Rachel Horne 27.05.2024 28:23
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 f...
Episode 351: Managing Stress When You're Living with MS with Dr. Grace Tworek 20.05.2024 29:01
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 Psychologis...
Episode 350: Choosing Your MS Disease-Modifying Therapy with Dr. Barbara Giesser 13.05.2024 34:45
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 a...
Episode 349: From the International Advisory Committee on Clinical Trials in Multiple Sclerosis Aging and MS Workshop (Part 2) 06.05.2024 44:15
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 Clinic...
Episode 348: From the International Advisory Committee on Clinical Trials in Multiple Sclerosis Aging and MS Workshop (Part 1) 29.04.2024 29:34
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...
Episode 347: Vitamin D and MS with Dr. Ellen Mowry 22.04.2024 33:38
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 S...
Episode 346: Why Members of Minority Communities May Face A More Severe MS Disease Course with Dr. Annette Langer-Gould 15.04.2024 33:04
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 qui...
Episode 345: A Deep Dive into Women's Health and MS with Dr. Rhonda Voskuhl and Dr. Anna Shah 08.04.2024 34:11
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 Asso...
Episode 344: Big Data Leads to Big Breakthroughs in MS with Professor Sergio Baranzini 01.04.2024 33:42
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...
Episode 343: Progressive MS Day with Kevin Reid 25.03.2024 29:41
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 Progres...
Episode 342: Behind the Scenes of an MS Research Study with Chiquita Shepard-Knight and Earl Sneed 18.03.2024 28:50
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...
Episode 341: How MS Can Impact Vision with Dr. Shiv Saidha 11.03.2024 31:17
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 is...
Episode 340: This Is Not Your Father's MS Rehabilitation with Dr. Deborah Backus and Dr. Brad Willingham 04.03.2024 31:18
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 livi...
Episode 339: Understanding Progression Independent of Relapse Activity with Professor Alan Thompson 26.02.2024 29:47
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 i...
Episode 338: Inside MS Advocacy and This Year's Public Policy Conference with Steffany Stern 19.02.2024 33:21
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...
Episode 337: Aging With MS with Dr. Aaron Boster 12.02.2024 39:44
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 he...
Episode 336: Applying for Social Security Disability Insurance with Jamie Hall, Esq. 05.02.2024 39:32
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...
Episode 335: Know Your Employment Rights If You're Living With MS with Christina Forster 29.01.2024 32:08
How, and to whom, should you disclose your MS at your job? And if you decide to disclose, is that information confidential? What does reasonable accommodation mean? If you need a day or two to bounce back after an infusion, is that part of your PTO? And what do you do when you no longer have days off available? If you're living with MS and you're employed, you absolutely need to know and understan...
Episode 334: Managing Health Insurance When You're Living With MS with Carla Turechek 22.01.2024 28:17
Living well with MS means learning to plan ahead. And, while planning ahead may not solve every issue that crosses your path, taking time to understand some of the details and making the right choices when it comes to your health insurance can make a huge difference in your MS care and treatment. MS Navigator and insurance resources specialist Carla Turechek joins me to share strategies for succes...
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