373 episodes

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 -- as a patient, caregiver, family member, or friend -- join us each week for RealTalk MS.

RealTalk MS Jon Strum

    • Health & Fitness
    • 4.7 • 128 Ratings

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 -- as a patient, caregiver, family member, or friend -- join us each week for RealTalk MS.

    Episode 339: Understanding Progression Independent of Relapse Activity with Professor Alan Thompson

    Episode 339: Understanding Progression Independent of Relapse Activity with Professor Alan Thompson

    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 may be wondering whether your central nervous system is under some sort of silent attack from smoldering MS. 

    Professor Alan Thompson joins me this week to shine a bright light on what, for many, are anxiety-inducing terms and help us understand what they are actually attempting to describe. Professor Thompson is the recipient of virtually every high honor and award that's given in the field of multiple sclerosis research, including the John Dystel Prize for MS Research in 2017, the Sobek Research Prize in 2020, and the 2021 Charcot Award, which recognizes a lifetime of achievement in outstanding research into understanding and treating MS.
    We're also sharing results of a study that suggests that kids and teens who are living with MS may experience better outcomes if they are started on a high-efficacy disease-modifying therapy.
    We'll tell you about a study that adds to the evidence that autologous hematopoietic stem cell transplantation may be a highly effective treatment that allows some people living with MS to live symptom-free and even return to the workforce.
    We're sharing the details of an AI tool that can predict an individual's disease course, while we're talking about survey results that show some strong push-back from the patient community when it comes to using artificial intelligence in the diagnostic process.
    And we'll tell you about a study that shows that caffeine may improve balance, mobility, and even quality of life for people living with MS.
    We have a lot to talk about! Are you ready for RealTalk MS??!

    This Week: What is "Progression Independent of Relapse Activity"?  1:31
    STUDY: High-efficacy disease-modifying therapies are shown to be effective in treating pediatric onset MS  3:02
    STUDY: Compelling evidence for autologous hematopoietic stem cell transplantation (HSCT) as an effective treatment for MS  6:49
    An AI tool has been developed that can predict an individual's MS disease course  9:17
    SURVEY: Some people have mixed feelings about using AI in diagnosing illness  11:47
    STUDY: Caffeine is shown to improve balance and mobility in people with MS  14:38
    Professor Alan Thompson helps define a couple of terms that people with MS may find confusing and even worrisome   16:47
    Share this episode  28:15
    Have you downloaded the free RealTalk MS app?  28:35

    SHARE THIS EPISODE OF REALTALK MS
    Just copy this link & paste it into your text or email: https://realtalkms.com/339
    ADD YOUR VOICE TO THE CONVERSATION
    I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
    Email: jon@realtalkms.com
    Phone: (310) 526-2283
    And don't forget to join us in the RealTalk MS Facebook group!

    LINKS
    If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
    STUDY: Highly Effective Therapies as First-Line Treatment for Pediatric-Onset Multiple Sclerosis
    https://jamanetwork.com/journals/jamaneurology/fullarticle/2814784

    STUDY: Autologous Hematopoietic Stem Cell Transplantation for Multiple Sclerosis: Long-Term Follow-Up Data from Norway 
    https://journals.sagepub.com/doi/10.1177/13524585241231665
    STUDY: Predicting Disease Severity

    • 29 min
    Inside MS Advocacy and This Year's Public Policy Conference with Steffany Stern

    Inside MS Advocacy and This Year's Public Policy Conference with Steffany Stern

    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 conference is the MS Society's Vice-President of Advocacy, Steffany Stern.

    We're also taking a deep dive into a paper just published by a group of MS experts detailing the current status of progressive MS research, identifying lessons learned along the way, and calling out the remaining challenges to better understanding MS progression. 
    We're sharing the details of how and where to register for this week's global webcast being hosted by the International Progressive MS Alliance.
    And I'm remembering my wife, Jeanne, on the fourth anniversary of her passing.
    We have a lot to talk about! Are you ready for RealTalk MS??!

    Jeanne's Story  :22
    This Week: Inside MS advocacy and this year's Public Policy Conference  8:36
    Experts publish an update on progressive MS research, identify lessons learned, and call out the  remaining challenges  9:35
    The International Progressive MS Alliance hosts a global webcast this Thursday  17:22
    MS Society's Vice-President of Advocacy, Steffany Stern, gives us a peek at this year's Public Policy Conference   18:54
    Share this episode  31:51
    Have you downloaded the free RealTalk MS app?  32:10

    SHARE THIS EPISODE OF REALTALK MS
    Just copy this link & paste it into your text or email: https://realtalkms.com/338
    ADD YOUR VOICE TO THE CONVERSATION
    I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
    Email: jon@realtalkms.com
    Phone: (310) 526-2283
    And don't forget to join us in the RealTalk MS Facebook group!

    LINKS
    If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
    National MS Society: Become an MS Activist
    https://nationalmssociety.org/advocacy

    PAPER: Clinical Trials for Progressive Multiple Sclerosis: Progress, New Lessons Learned, and Remaining Challenges
    https://www.thelancet.com/journals/laneur/article/PIIS1474-4422(24)00027-9/abstract

    RealTalk MS Episode 280: How the Proposed Framework for Diagnosing and Treating MS Will Affect You with Dr. Tim Coetzee 
    https://realtalkms.com/280
    RealTalk MS Episode 193: Managing the Emotional Fallout of the Pandemic with Dr. Gayle Lewis
    https://realtalkms.com/193

    WEBCAST: New Treatments for Progressive MS: Recent Advances and Promising Research
    https://www.msif.org/treatments-webcast/
    Join the RealTalk MS Facebook Group
    https://facebook.com/groups/realtalkms
    Download the RealTalk MS App for iOS Devices
    https://itunes.apple.com/us/app/realtalk-ms/id1436917200
    Download the RealTalk MS App for Android Devices
    https://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
    Give RealTalk MS a rating and review
    http://www.realtalkms.com/review

    Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
    RealTalk MS Episode 338
    Guest: Steffany Stern
    Privacy Policy

    • 33 min
    Aging With MS with Dr. Aaron Boster

    Aging With MS with Dr. Aaron Boster

    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 with MS and with aging?

    This week, Dr. Aaron Boster joins me on a deep dive into aging with MS. Dr. Boster brings 19 years of experience as an MS clinician. He's participated in over 65 clinical trials. And, following its FDA approval, Dr. Boster administered the very first dose of Ocrevus in the world. Dr. Boster is well known throughout the MS community for the countless number of short videos and live Q&A sessions he regularly hosts and posts on YouTube.
    We have a lot to talk about! Are you ready for RealTalk MS??!

    This Week: Aging with MS :22
    Dr. Aaron Boster tackles the multifaceted subject of aging with MS  1:59
    Share this episode  38:09
    Have you downloaded the free RealTalk MS app?  38:32

    SHARE THIS EPISODE OF REALTALK MS
    Just copy this link & paste it into your text or email: https://realtalkms.com/337
    ADD YOUR VOICE TO THE CONVERSATION
    I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
    Email: jon@realtalkms.com
    Phone: (310) 526-2283
    And don't forget to join us in the RealTalk MS Facebook group!

    LINKS
    If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
    Join the RealTalk MS Facebook Group
    https://facebook.com/groups/realtalkms
    Download the RealTalk MS App for iOS Devices
    https://itunes.apple.com/us/app/realtalk-ms/id1436917200
    Download the RealTalk MS App for Android Devices
    https://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
    Give RealTalk MS a rating and review
    http://www.realtalkms.com/review

    Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.
    RealTalk MS Episode 337
    Guest: Dr. Aaron Boster
    Privacy Policy

    • 39 min
    Applying for Social Security Disability Insurance with Jamie Hall, Esq.

    Applying for Social Security Disability Insurance with Jamie Hall, Esq.

    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 applying for SSDI benefits.
    We'll also tell you about the amazing work this year's recipient of the Barancik Prize for Innovation in MS Research is involved in.
    We're reporting on the progress that scientists are making in penetrating the blood brain barrier (And we'll remind you about why that makes a real difference for everyone living with MS!)
    We're sharing the details about KYV-101, the experimental CAR-T cell therapy that's been given a Fast Track designation by the FDA.
    We'll tell you about study results that show people with a university education are more likely to be on a disease-modifying therapy.
    And we're sharing study results that identify the inequity in geographic proximity to MS care in the United States.
    We have a lot to talk about! Are you ready for RealTalk MS??!

    This Week: How to apply for Social Security Disability Insurance benefits  :22
    This year's recipient of the Barancik Prize for Innovation in MS research  1:58
    Real progress reported in efforts to penetrate the blood brain barrier  7:17
    FDA gives Fast-Track designation to CAR-T cell therapy for MS  10:03
    STUDY: Having a university education makes it more likely that someone with MS will be on a DMT  13:04
    STUDY: Geographic proximity to MS care in the U.S. is far from equal   15:04
    Disability law expert Jamie Hall discusses how to apply for SSDI benefits   19:29
    Share this episode  38:01
    Have you downloaded the free RealTalk MS app?  38:21

    SHARE THIS EPISODE OF REALTALK MS
    Just copy this link & paste it into your text or email: https://realtalkms.com/336
    ADD YOUR VOICE TO THE CONVERSATION
    I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
    Email: jon@realtalkms.com
    Phone: (310) 526-2283
    And don't forget to join us in the RealTalk MS Facebook group!

    LINKS
    If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
    Applying for Social Security Disability Benefits: A Guidebook for People with MS and their Healthcare Providers
    https://nationalmssociety.org/NationalMSSociety/media/MSNationalFiles/Brochures/Guidebook-Social-Security-Disability-for-People-with-MS.pdf

    Predictive High-Throughput Platform for Dual Screening of mRNA Lipid Nanoparticle Blood Brain Barrier Transfection and Crossing
    https://pubs.acs.org/doi/10.1021/acs.nanolett.3c03509
    STUDY: University Education Facilitates Uptake of Disease-Modifying Therapies for Multiple Sclerosis: A Community-Based Study Using the UK MS Register
    https://journals.sagepub.com/doi/10.1177/13524585231221411

    STUDY: Geographic Proximity in Access to Neurologists and Multiple Sclerosis Care in the United States
    https://www.neurology.org/doi/10.1212/WNL.0000000000207916

    Join the RealTalk MS Facebook Group
    https://facebook.com/groups/realtalkms
    Download the RealTalk MS App for iOS Devices
    https://itunes.apple.com/us/app/realtalk-ms/id1436917200
    Download the RealTalk MS App for Android Devices
    https://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
    Give RealTalk MS a rating and review
    http://www.realtalkms.com/review

    Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscrib

    • 39 min
    MS21: Are We Meeting the Needs of Individuals at the Time of Their MS Diagnosis with Prof. Alice Laroni and Rachel Horne

    MS21: Are We Meeting the Needs of Individuals at the Time of Their MS Diagnosis with Prof. Alice Laroni and Rachel Horne

    This special episode of RealTalk MS is sponsored by EMD Serono and is only intended for a U.S. audience. EMD Serono is the healthcare business of Merck, KGaA, Darmstadt, Germany, in the United States and Canada.

    In this special episode of RealTalk MS, Professor Alice Laroni and Rachel Horne join me to explore  what happens at the time someone receives their MS diagnosis, What the conversation with their neurologist is like, what kind of information they receive, and where they might turn to learn more about their diagnosis. 
    We're also exploring what should be happening at the time of diagnosis and what needs to come next.
    Professor Alice Laroni is a neurologist with over 19 years of experience providing clinical care to MS patients and more than 14 years of experience in neuroimmunological research. She is also an Assistant Professor of Neurology at the University of Genova, in Italy.
    Rachel Horne is a professional journalist with a focus on medical issues, as well as someone who's living with MS, herself. Rachel is a regular contributor to The MS Blog, and has also contributed to articles published in science journals including The BMJ, Annals of Neurology, and Neurology.
    Both Professor Laroni and Ms. Horne are active members of the MS in the 21st Century initiative. MS21 is a Merck, KGaA, Darmstadt, Germany, initiaitve involving healthcare professionals and patient advocates. To learn more about MS in the 21st Century, please visit www.msinthe21stcentury.com.

    • 24 min
    Know Your Employment Rights If You're Living With MS with Christina Forster

    Know Your Employment Rights If You're Living With MS with Christina Forster

    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 understand your rights in the workplace. 

    MS Navigator Christina Forster joins me to answer these questions and more as she shines a bright light on your rights in the workplace.
    I'll also remind you why I consider the MS Navigator program to be the gold standard when it comes to customized, one-on-one problem solving and support for anyone affected by MS. (And did I mention there's no charge???)
    I hear your questions, so we're taking a moment to review what the RealTalk MS show notes are all about, and where to find them.
    We're sharing study results that show a wheat-free diet may reduce MS severity (and it's not about the gluten!)
    We'll tell you about a call by experts to adopt a new framework for describing Parkinson's Disease (and we'll explain why that's relevant to the MS community)
    Scientists have identified 4 variant genes that place an individual taking some common MS disease-modifying therapies at higher risk of contracting PML. There's a test for that, and we'll tell you how to have that genetic testing done at no cost.
    We're talking about research that uncovered new details about how cells in the central nervous system communicate with the cells that produce myelin. And we'll tell you why zebrafish are the key to this research.
    And we're sharing a change in strategy for treating MS contained in the updated guidelines published by the Spanish Society of Neurology 
    We have a lot to talk about! Are you ready for RealTalk MS??!

    This Week: Successfully navigating the health insurance maze  :22
    Why the MS Navigators are the gold standard when it comes to support for people affected by MS  :56
    Everything you need to know about the RealTalk MS show notes  2:12
    STUDY: A wheat-free diet may reduce MS severity  5:28
    Experts call for a new framework for describing Parkinson's Disease  8:31
    A test to determine who is at high risk for contracting PML is available...at no cost  11:36
    STUDY: Researchers identify specific proteins and signals involved in myelin formation in zebrafish  14:08
    The Spanish Society of Neurology has updated its guidelines for treating MS  15:42
    MS Navigator Christina Forster discusses your rights in the workplace   19:35
    Share this episode  30:37
    Have you downloaded the free RealTalk MS app?  30:57

    SHARE THIS EPISODE OF REALTALK MS
    Just copy this link & paste it into your text or email: https://realtalkms.com/335
    ADD YOUR VOICE TO THE CONVERSATION
    I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
    Email: jon@realtalkms.com
    Phone: (310) 526-2283
    And don't forget to join us in the RealTalk MS Facebook group!

    LINKS
    If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
    Contact an MS Navigator
    Phone: 1-800-344-4867
    Web via chat: https://nationalmssociety.org
    Email: contactusnmss@nmss.org

    STUDY: Attenuation of Immune Activation in Patients with Multiple Sclerosis on a Wheat-Reduced Diet: A Pilot Crossover Study 
    https://journals.sagepub.com/doi/10.1177/17562864231170928
    Progressive Multifocal Leukoencephalopathy Genetic Risk Variants for Pharmacovigilance of Immunosuppressive Therapies
    https://www.researchgate.net/publication/371965313_OPEN_ACCESS_EDITED_BY_Progressive_multifocal_leukoenceph

    • 32 min

Customer Reviews

4.7 out of 5
128 Ratings

128 Ratings

AIRiel Kara ,

Thank you

I’m grateful this podcast exists, it’s the main way that I educate myself about MS. John is awesome and makes sure that all the details are communicated clearly. The guests are always great. Thank you!

DefJuan ,

Outstanding resource

As someone with a family member living with MS, trying to understand all of the facets of the condition can be daunting. This podcast goes above and beyond to explain and relate the sometimes difficult concepts into digestible and actionable bits of information. Other members of my family also listen to the show, and it has sparked conversation leading to greater understanding amongst all of us. An absolute service and very much appreciated.

Farmer188 ,

PBA please

Real Talk, please- please- please, address PBA. If I have missed it, please reply. I am on a mission.

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