376 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 • 130 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.

    Behind the Scenes of an MS Research Study with Chiquita Shepard-Knight and Earl Sneed

    Behind the Scenes of an MS Research Study with Chiquita Shepard-Knight and Earl Sneed

    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 to Capitol Hill as we share conversations that we had during Hill Day at the National MS Society's Public Policy Conference. 
    It's MS Awareness Month, and we're sharing new videos that feature interviews with leading MS experts along with the thoughts and reactions of people living with MS.
    And we'll tell you where you can catch the video replay of the International Progressive MS Alliance's webcast on emerging treatments for progressive MS.
    We have a lot to talk about! Are you ready for RealTalk MS??!

    Tomorrow! The ACTRIMS Post-Forum Patient-Centered Webinar  :22
    This Week: The patient perspective on participating in an MS research study  1:38
    Live! From the Natinal MS Society's Public Policy Conference  2:28
    People with MS weign in on the impact of several ECTRIMS presentations  10:17
    Catch the video replay of the International Progressive MS Alliance webcast  11:35
    Chiquita Shepard-Knight and Earl Sneed discuss their experience participating in the TEAAMS study   12:11
    Share this episode  27:18
    Have you downloaded the free RealTalk MS app?  27:38

    SHARE THIS EPISODE OF REALTALK MS
    Just copy this link & paste it into your text or email: https://realtalkms.com/342
    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
    REGISTER: ACTRIMS Post-Forum Patient-Centered Webinar
    https://fs2.formsite.com/1FItkk/tgx8tu3xg0/index

    VIDEO: Dr. Jiwon Oh shares encouraging results from an extension study of Tolebrutinib, an investigational disease-modifying therapy. Then, two people living with MS share their thoughts about clinical trials and a precision medicine approach to treating MS
    https://youtu.be/eWoZLF4bZmo
    VIDEO: Dr. Anthony Feinstein discusses the outcome of the CogEx study, Then, two people living with MS share their thoughts about the impact of this study
    https://www.youtube.com/watch?v=UtGtCnNkYOY

    VIDEO: Dr. Annette Langer-Gould discusses the impact of other health conditions on people living with MS. Then, two people living with MS share their thoughts and experiences of  managing their MS along with additional health conditions
    https://www.youtube.com/watch?v=J83jlqMbsZo
    VIDEO: Dr. Daniel Ontaneda discusses how artificial intelligence will impact MS treatment. Then, two people living with MS share their thoughts on the potential impact of AI on MS treatment and the future patient experience
    https://www.youtube.com/watch?v=_fRLW69Xc1A

    VIDEO: Dr. Robert Motl discusses the benefits of exercise for people living with MS. Then, two people living with MS share their thoughts on how exercise has impacted their MS journey
    https://www.youtube.com/watch?v=oZDdp8JumFg
    VIDEO: International Progressive MS Alliance Webcast Replay: Emerging Treatments for Progressive MS
    https://www.youtube.com/watch?v=W4hxtl38MBQ
    The TEAAMS Study
    https://projectteaams.ahs.uic.edu
    Join the RealTalk MS Facebook Group
    https://faceb

    • 28 min
    Episode 341: How MS Can Impact Vision with Dr. Shiv Saidha

    Episode 341: How MS Can Impact Vision with Dr. Shiv Saidha

    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 Division of Neuroimmunology and Neurological Infections at Johns Hopkins Medicine.
    We have a lot to talk about! Are you ready for RealTalk MS??!

    This Week: We're taking a deep dive into managing MS-related vision issues  :22
    Doctor Shiv Saidha discusses how to best manage MS-related vision issues  1:17
    Share this episode  29:44
    Have you downloaded the free RealTalk MS app?  30:05

    SHARE THIS EPISODE OF REALTALK MS
    Just copy this link & paste it into your text or email: https://realtalkms.com/341
    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 341
    Guest: Dr. Shiv Saidha
    Privacy Policy

    • 31 min
    This Is Not Your Father's MS Rehabilitation with Dr. Deborah Backus and Dr. Brad Willingham

    This Is Not Your Father's MS Rehabilitation with Dr. Deborah Backus and Dr. Brad Willingham

    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's a researcher, physical therapist, and educator with more than 30 years of experience in the neurorehabilitation field.
    Dr. Willingham is the Director of MS Research at the Shepherd Center. Dr. Willingham's work focuses on the development of innovative technologies and strategies to advance neurorehabilitation.
    We have a lot to talk about! Are you ready for RealTalk MS??!

    This Week: We're taking a deep dive into next-generation tools for MS rehabilitation  :22
    Doctors Deborah Backus and Brad Willingham discuss innovations in MS rehabilitation   1:44
    Share this episode  29:48
    Have you downloaded the free RealTalk MS app?  30:08

    SHARE THIS EPISODE OF REALTALK MS
    Just copy this link & paste it into your text or email: https://realtalkms.com/340
    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 340
    Guest: Dr. Deborah Backus and Dr. Brad Willingham
    Privacy Policy

    • 31 min
    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

Customer Reviews

4.7 out of 5
130 Ratings

130 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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