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RealTalk MS

Health & Wellness Podcasts

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.

Location:

United States

Description:

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.

Language:

English

Contact:

310-961-4954


Episodes

Episode 342: Behind the Scenes of an MS Research Study with Chiquita Shepard-Knight and Earl Sneed

3/18/2024
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://facebook.com/groups/realtalkms Download...

Duration:00:28:50

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

3/11/2024
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

Duration:00:31:17

Episode 340: This Is Not Your Father's MS Rehabilitation with Dr. Deborah Backus and Dr. Brad Willingham

3/4/2024
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

Duration:00:31:18

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

2/26/2024
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 in Multiple Sclerosis Using Multimodal...

Duration:00:29:47

Episode 338: Inside MS Advocacy and This Year's Public Policy Conference with Steffany Stern

2/19/2024
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

Duration:00:33:21

Episode 337: Aging With MS with Dr. Aaron Boster

2/12/2024
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

Duration:00:39:44

Episode 336: Applying for Social Security Disability Insurance with Jamie Hall, Esq.

2/5/2024
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 subscribe to our newsletter at our website,...

Duration:00:39:32

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

1/31/2024
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.

Duration:00:24:51

Episode 335: Know Your Employment Rights If You're Living With MS with Christina Forster

1/29/2024
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...

Duration:00:32:08

Episode 334: Managing Health Insurance When You're Living With MS with Carla Turechek

1/22/2024
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 successfully navigating the health insurance maze with a minimum number of "surprises." We're also sharing study results that can help you get the most benefit from your everyday physical activity. We'll introduce you to an early-stage biotech company that just secured funding to develop three novel therapies that will address myelin repair and neuroinflammation. We'll share study results that show that a high level of a protein in the blood is a reliable predictor of future disability progression among people living with progressive MS. We're sharing some eye-opening discount prices from the Mark Cuban Cost Plus Drug Company for generics for three different disease-modifying therapies. And, speaking of generics, we'll explain why you can buy the generic for Tecfidera in the United States today, but it won't be available in Europe until next year, at the earliest. We have a lot to talk about! Are you ready for RealTalk MS??! This Week: Successfully navigating the health insurance maze :22 STUDY: The benefit of physical activity lies in step rate and not step count 1:42 Myrobalan Therapeutics secures financing to develop 3 therapies that address myelin repair and neuroinflammation 3:47 STUDY: High levels of a protein in the blood may predict disability progression in people with primary progressive MS 5:41 You'll want to check out the prices of generics for 3 disease-modifying therapies at Mark Cuban's Cost Plus Drug Company 8:50 Generics for Tecfidera have been delayed at least one year in Europe 10:47 MS Navigator and insurance resources specialist Carla Turechek shares strategies for maximizing your health insurance benefits and minimizing your costs 12:03 Share this episode 26:46 Have you downloaded the free RealTalk MS app? 27:07 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email: https://realtalkms.com/334 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: Free-Living Ambulatory Physical Activity and Cognitive Function in Multiple Sclerosis: The Significance of Step Rate vs Step Volume https://pubmed.ncbi.nlm.nih.gov/38214757 Myrobalan Therapeutics https://myrotx.com STUDY: Serum Glial Fibrillary Acidic Protein and Disability Progression in Progressive Multiple Sclerosis https://onlinelibrary.wiley.com/doi/10.1002/acn3.51969 The Mark Cuban Cost Plus Drug Company https://costplusdrugs.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 334 Guest: Carla Turechek Privacy Policy

Duration:00:28:17

Episode 333: Improving Communication Between You and Your Neurologist with Dr. Luis Manrique-Trujillo

1/15/2024
You've just had your appointment with your neurologist or MS Specialist and you're on your way home, feeling like you weren't heard. Maybe there wasn't sufficient time. Or it might feel like your opinion simply isn't valued. Your frustration could even be the result of language issues and cultural barriers that make communication difficult. Whatever the reason, it doesn't have to be this way. Dr. Luis Manrique-Trujillo joins me this week to share tips and strategies that will improve the quality of communication between you and every member of your MS care team. Dr. Manrique-Trujillo is a neurologist specializing in neuroimmunology and multiple sclerosis at MedStar Georgetown University Hospital in Washington, D.C. We're also sharing some fascinating research that traces the gene variants that increase someone's risk of developing MS all the way back to the Bronze Age. We'll tell you about a small study that may explain how the Epstein-Barr Virus triggers MS. We'll tell you about a class-action lawsuit that accuses Pharmacy Benefit Managers of illegal collusion and price-fixing. (And we'll explain why this lawsuit could be a huge step toward lowering the cost of your prescription medications) And we're sharing our plans for RealTalk MS in 2024. We have a lot to talk about! Are you ready for RealTalk MS??! My New Year's Resolutions for RealTalk MS :22 This Week: Improving communication between you and your neurologist 4:59 STUDY: Ancient DNA reveals how MS risk genes arose and spread across Europe 5:59 STUDY: EBV-specific T-cells may play a key role in developing MS 9:36 An important class-action lawsuit has been filed against Pharmacy Benefit Mangers 11:18 Dr. Luis Manrique-Trujillo shares strategies for improving communication between you and your neurologist 15:41 Share this episode 34:19 Have you downloaded the free RealTalk MS app? 34:40 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email: https://realtalkms.com/333 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: Elevated Genetic Risk for Multiple Sclerosis Emerged in Steppe Pastoralist Populations https://www.nature.com/articles/s41586-023-06618-z STUDY: Expanded T Lymphocytes in the Cerebrospinal Fluid of Multiple Sclerosis Patients are Specific for Epstein-Barr-Virus-Infected B Cells https://pnas.org/doi/abs/10.1073/pnas.2315857121 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 333 Guest: Dr. Luis Manrique-Trujillo Privacy Policy

Duration:00:35:53

Episode 332: Managing the Cost of Generic, Biosimilar, and Other Prescription Medications with Robin LaRue

1/8/2024
If you remember your Economics 101 class, the introduction of generic and biosimilar drugs should cause prices to drop. Yet, when it comes to MS disease-modifying therapies that isn't always the case. MS Navigator Robin LaRue joins me this week to discuss how to manage the sometimes crazy costs of MS prescription medications. We're also sharing results from a study that show there is absolutely no association between consuming dairy and gluten products and MS disease activity. We'll tell you about two different studies that suggest that non-pharmaceutical interventions may be effective in lessening MS fatigue. We're sharing results from a trial that reveal an innovative approach to supporting MS caregivers. And we'll tell you about 4.6 million euro in new funding from the International Progressive MS Alliance that will go toward research focused on developing new treatments for progressive MS. We have a lot to talk about! Are you ready for RealTalk MS??! This Week: Managing the cost of MS medications :22 STUDY: No association between consuming dairy and gluten products and MS disease activity 1:42 STUDY: SMS-messaging is shown to improve MS-related fatigue 4:50 STUDY: Talk therapy is shown to improve MS-related fatigue 8:36 STUDY: Remote coaching and online information improves the well-being of MS caregivers 10:43 International Progressive MS Alliance announces new research funding 13:32 MS Navigator Robin LaRue discusses how to manage the cost of MS prescription medications 15:57 Share this episode 27:48 Have you downloaded the free RealTalk MS app? 28:09 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email: https://realtalkms.com/332 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: Dairy and Gluten in Disease Activity in Multiple Sclerosis https://journals.sagepub.com/doi/10.1177/20552173231218107 STUDY: Text Messaging Intervention for Fatigue Self-Management in People with Stroke, Spinal Cord Injury, and Multiple Sclerosis: A Pilot Study https://sciencedirect.com/science/article/abs/pii/S1936657423001310?via%3Dihub STUDY: Effectiveness of a Blended Booster Programme for the Long-Term Outcome of Cognitive Behavioural Therapy for MS-Related Fatigue: A Randomized Controlled Study https://journals.sagepub.com/doi/full/10.1177/13524585231213258 STUDY: Effect of 2-Arm Intervention on Emotional Outcomes in Informal Caregivers of Individuals with Multiple Sclerosis: A Randomized Pilot Study Trial https://meridian.allenpress.com/ijmsc/article/25/6/252/495534/Effect-of-2-Arm-Intervention-on-Emotional-Outcomes International Progressive MS Alliance https://progressivemsalliance.org 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 332 Guest: Robin LaRue Privacy Policy

Duration:00:29:21

Episode 331: Becoming a Donor to the National MS Brain Bank with Dr. Claire Riley

1/1/2024
This is the week that a lot of us make resolutions for the coming year. And I'm hoping that after you hear my conversation with Dr. Claire Riley, many of you will resolve to become donors to the National Multiple Sclerosis Brain Bank. Resolving to donate brain and tissue to the National MS Brain Bank is a new year's resolution that goes far beyond the standard eat better and exercise more promises that so many of us make to ourselves every year. It's deeply meaningful, profoundly personal, and, as Dr. Riley describes it, it's a heroic step in choosing to play an important role in curing MS. We're also sharing the details about a partial hold that the FDA has placed on another clinical trial for an experimental MS disease-modifying therapy. And we'll share some potentially disturbing news about how artificial intelligence is being leveraged to deny patients medically necessary care. We have a lot to talk about! Are you ready for RealTalk MS??! This Week: Becoming a donor to the National MS Brain Bank :23 FDA puts a partial hold on Phase 3 clinical trial investigating Fenebrutinib 1:23 Are health insurers using AI for all the wrong reasons? 4:49 Dr. Claire Riley discusses why you should consider being a donor to the National MS Brain Bank 8:09 Share this episode 28:40 Have you downloaded the free RealTalk MS app? 29:01 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email: https://realtalkms.com/331 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 The National Multiple Sclerosis Brain Bank https://msbraindonation.org 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 331 Guests: Dr. Claire Riley Privacy Policy

Duration:00:30:14

Episode 330: Revisiting How the Proposed Framework for Researching, Diagnosing, and Treating MS Will Affect You with Prof. Tanja Kuhlmann and Dr. Tim Coetzee

12/25/2023
This week, I'm revisiting the proposal from the International Advisory Committee on Clinical Trials in MS that recommended adopting a new framework that leverages what scientists are continuing to learn about MS and redefines how we talk about MS, how we research MS, how we diagnose MS, and how we treat MS. This proposed framework holds the promise of taking MS care to the next level. This new framework was first proposed in a paper published in November 2022, and last January, I spoke with the lead author of that paper, Professor Tanja Kuhlmann. We discussed why an international panel of distinguished MS experts was recommending changing something that has been in place for decades. The following week, I reached out to the National MS Society's Chief Advocacy, Services, and Science Officer, Dr. Tim Coetzee, and we talked about how this new framework for describing MS would impact people living with MS. We have a lot to talk about! Are you ready for RealTalk MS??! This Week: Revisiting the proposed framework for describing MS :22 Prof. Tanja Kuhlmann discusses why this new framework is necessary 1:46 Dr. Tim Coetzee talks about how this new framework will impact people living with MS 14:49 Share this episode 36:25 Have you downloaded the free RealTalk MS app? 36:46 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email: https://realtalkms.com/330 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 330 Guests: Prof. Tanja Kuhlmann and Dr. Tim Coetzee Privacy Policy

Duration:00:37:57

Episode 329: Revisiting the Pathways To Cures Global Summit

12/18/2023
The holiday season provides me with an opportunity to indulge in what's become a RealTalk MS tradition. I reserve the last two episodes of the year to revisit the most compelling,and important conversations that I've had over the past year. This week, I'm revisiting the conversations I had at the Pathways To Cures Global Summit that took place in New York last May. The National MS Society brought together the best and brightest minds in MS research, the CEOs of major MS Societies, representatives from the pharmaceutical industry, and people affected by MS to update the scientific foundation of the Pathways To Cures research roadmap and set the global MS research agenda for the next 3-5 years. I had the opportunity to speak with several of the top MS experts in the world at this meeting and, collectively, these are the conversations that have resonated with me all year long. We have a lot to talk about! Are you ready for RealTalk MS??! Happy Holidays! :22 This Week: Revisiting the Pathways to Cures Global Summit :54 My conversation with a distinguished group of CEOs representing 5 major MS Societies 2:55 Dr. Tim Coetzee discusses the current state of MS care and the work ahead 9:11 Kathy Smith shares her perspective on the Pathways to Cures Global Summit 13:54 Dr. Anne-Katrin Probstel talks about stopping MS 20:26 Dr. Naila Makhami discusses detecting MS early 31:36 Dr. Daniel Ontaneda suggests how people living with MS should be thinking about the Pathways to Cures global research initiative 35:53 Dr. Mitzi Joi Williams discusses the importance of ensuring that the Pathways to Cures initiative doesn't leave anyone behind 41:11 Share this episode 47:21 Have you downloaded the free RealTalk MS app? 47:42 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email: https://realtalkms.com/329 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 Learn more about Pathways To Cures https://www.nationalmssociety.org/pathways-to-cures 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 329 Guests: Cyndi Zagieboylo, Nick Moberly, Klaus Hom, Rohan Greenland, Dr. Pamela Valentine, Dr. Tim Coetzee, Kathy Smith, Dr. Anna-Katrin Probstel, Dr. Naila Makhami, Dr. Daniel Ontaneda, Dr. Mitzi Joi Williams Privacy Policy

Duration:00:48:54

Bonus Episode -- MS21: Patient Empowerment: Invisible Symptoms of MS with Professor Klaus Schmierer and Jane Shanahan

12/13/2023
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, we're exploring what the invisible symptoms of MS are, and how to best empower people living with MS to talk about them with their healthcare team. Professor Klaus Schmierer is a Professor of Neurology at the Blizard Institute, Queen Mary's Univerrsity of London and a Consultant Neurologist at the Royal London Hospital, which is part of Barts Health NHS Trust in the U.K. Professor Schmierer has a keen interest in MS and focuses his research on the underlying mechanisms of the disease and how to improve diagnosis with imaging tools, such as MRI. Jane Shanahan is a patient advocate who was diagnosed with MS in 2016. Jane lives with her husband and two children. She has developed an interest in better understanding MS, as well as educating her family, friends, colleagues, and others about the disease. Both Professor Schmierer and Jane are active members of the MS in the 21st Century initiative. MS21 is a Merck KGaA, Darmstadt, Germany, initiative involving healthcare professionals and patient advocates. To learn more about MS in the 21st Century, please visit www.msinthe21stcentury.com.

Duration:00:34:03

Episode 328: Cognitive Rehabilitation and MS with Dr. Nancy Chiaravalloti

12/11/2023
Cognitive dysfunction is a common symptom of multiple sclerosis, affecting more than half of the people living with MS. While cognitive issues like changes in memory, difficulty maintaining attention, slower information processing speed and executive function may not be among the most disabling symptoms of MS, they may be among the most disconcerting symptoms. Whether it's your short-term memory, the ability to find your way to a familiar destination that you've gone to hundreds of times, or your ability to follow conversations with friends or business colleagues, these are the kinds of real-world situations that can bring someone to a hard stop, recognizing that they're changing in profound ways that aren't outwardly apparent. And that's a scary feeling. Fortunately, researchers are making real progress in developing ways for people living with MS to improve their cognition. This week, Dr. Nancy Chiaravalloti joins me to talk about what researchers are learning and what types of cognitive rehabilitation are available today. Dr. Chiaravalloti is the Director of the Center for Neuropsychology and Neuroscience Research and the Center for Traumatic Brain Injury Research at Kessler Foundation. Dr. Chiaravalloti's research is focused on ways to stimulate new learning, memory, and processing speed. We're also sharing some promising results from a preclinical study of an investigational Epstein-Barr Virus vaccine (And we'll explain why this is so important to the MS community!). Dr. Nuriel Moghavem will take us through a day in the life of an MS Fellow. We'll share the disappointing results of the Phase 3 clinical trial for Evobrutinib. And we'll tell you about super-small biological robots that seem capable of doing some amazing things -- including encouraging the growth of healthy nerve cells to replace damaged nerve cells. We have a lot to talk about! Are you ready for RealTalk MS??! This Week: Cognitive Rehabilition :22 Promising news from a preclinical study of an investigational EBV vaccine 2:08 A day in the life of an MS Fellow with Dr. Nuriel Moghavem 4:21 Evobrutinib Phase 3 clinical trial has failed to meet its end points 17:19 Biological robots assemble into a "superbot" and encourage the growth of healthy nerve cells 18:28 Dr. Nancy Chiaravalloti discusses breakthrough treatment for cognitive dysfunction in MS 21:19 Share this episode 31:48 Have you downloaded the free RealTalk MS app? 32:08 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email: https://realtalkms.com/328 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: Motile Living Biobots Self-Construct from Adult Human Somatic Progenitor Seed Cells https://onlinelibrary.wiley.com/doi/10.1002/advs.202303575 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 328 Guests: Dr. Nuriel Moghavem and Dr. Nancy Chiaravalloti Privacy Policy

Duration:00:33:19

Episode 327: Cannabis and MS with Dr. Michelle Cameron

12/4/2023
A growing number of people living with MS are turning to cannabis for symptom management. But which MS symptoms have responded to being treated with cannabis? Where should someone buy medical cannabis? And is using medical cannabis even legal? Dr. Michelle Cameron returns to the podcast to discuss the risks and benefits of using cannabis for symptom management. Dr. Cameron is a neurologist and physical therapist, as well as a professor in the Department of Neurology at Oregon Health & Science University. We're also sharing some long overdue good news from United Airlines for passengers who use wheelchairs. We'll tell you about the first adaptive clinical trial for people living with progressive MS in Australia. We'll give you the details of the FDA's clearance of an artificial intelligence platform designed to analyze MRI scans to detect and monitor MS disease activity. And we're sharing promising results from a Phase 1 clinical trial that focused on using neural stem cells to stop disease progression among people living with secondary progressive MS. We have a lot to talk about! Are you ready for RealTalk MS??! This Week: Cannabis and MS :22 United promises friendlier skies for wheelchair users 1:04 PLATYPUS adaptive clinical trial to begin in Australia 3:47 FDA approves artificial intelligence platform for detecting MS disease activity in MRI scans 5:34 Neural stem cell Phase 1 clinical trial shows encouraging progress 6:47 Dr. Michelle Cameron discusses the risks and benefits of using cannabis to manage MS symptoms 9:07 Share this episode 24:01 Have you downloaded the free RealTalk MS app? 24:22 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email: https://realtalkms.com/327 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: Phase 1 Clinical Trial of Intracerebroventricular Transplantation of Allogenic Neural Stem Cells in People with Progressive Multiple Sclerosis https://www.sciencedirect.com/science/article/pii/S1934590923003934 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 327 Guest: Dr. Michelle Cameron Privacy Policy

Duration:00:25:35

Episode 326: A Happy Ending That Almost Wasn't with Chris Holland

11/27/2023
Chris Holland had a successful career working as a paralegal when he was diagnosed with MS in 2004. And, while everyone reacts differently to being diagnosed with MS, no one could have predicted what happened next, as Chris lost everything battling demons he never imagined he would ever face. But it would be a mistake betting against Chris Holland's resilience. Bouncing back, Chris decided to pursue his lifelong dream of becoming a chef. Today, Chris is a three-time Food Network Chopped champion and the owner and executive chef at Kantina, in Sparkill, New York. This week, Chris joins me to share a story with a happy ending that almost wasn't. November is National Family Caregivers Month, which seems to be the perfect time for iConquer MS to expand its community to include MS caregivers. We're sharing all the details of the newly launched iConquer MS Caregivers initiative. It's impossible to discuss caregiving without mentioning the lifelong contributions made by former First Lady Rosalynn Carter. This week, we're remembering Mrs. Carter and reflecting on her legacy. And we'll tell you how Infusion Day actually became Spa Day in Dawson City, Yukon. We have a lot to talk about! Are you ready for RealTalk MS??! This Week: Chris Holland shares his remarkable story of resilience :22 November is National Family Caregivers Month 1:22 Remembering Former First Lady Rosalynn Carter 1:52 If you're caring for a loved one with MS, iConquer MS has set out a welcome mat 3:07 Infusion Day is now Spa Day in Dawson City, Yukon 7:13 Chris Holland talks about how he barely made it all the way back 9:34 Share this episode 28:24 Have you downloaded the free RealTalk MS app? 28:44 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email: https://realtalkms.com/326 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 iConquer MS Caregivers https://iconquerms.org/caregivers PAPER: Addressing the Needs of Multiple Sclerosis Caregivers from Diagnosis Onward: The Development of a Comprehensive Caregiver Protocol https://meridian.allenpress.com/ijmsc/article/25/6/273/496788/Addressing-the-Needs-of-Multiple-Sclerosis 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 326 Guest: Chris Holland Privacy Policy

Duration:00:29:55

Episode 325: Making Your Home Safe and Accessible with Tracy Carrasco

11/20/2023
According to the CDC, 36 million falls are reported each year, resulting in 3 million adults being transported to the Emergency Room and 32,000 adults dying from their falls. Studies have shown that, in any six-month period, more than 50% of the people living with MS fall at least once, and 30% fall multiple times. As falls at home are common, occupational therapist Tracy Carrasco joins me to share tips and strategies for making your home safe and accessible. We're also sharing a research roundup featuring results from a few different clinical trials that are focused on the impact of diet on MS. And that includes the Swank diet, the Wahls diet, the Mediterranean diet, and a simple low-fat diet. We'll tell you about a novel study that explored the economic impact of an Epstein-Barr Virus vaccine on the cost of MS care in Australia. If you're living with MS, we have your invitation to participate in the Patient Reported Outcomes for Multiple Sclerosis (PROMS) initiative survey. And we'll tell you how you can catch the video replay of the International Progressive MS Alliance global webcast on research and treatment for cognitive challenges in progressive MS. We have a lot to talk about! Are you ready for RealTalk MS??! This Week: Some of the things I'm thankful for :22 Research Roundup: The impact of diet on MS 2:40 Survey results show how an EBV vaccine could impact the cost of MS care in Australia 9:03 If you're living with MS, here's your invitation to participate in the PROMS initiative online survey 12:22 How to catch the video replay of the International Progressive MS Alliance global webcast about research and treatment for cognitive challenges in progressive MS 13:38 Tracy Carrasco shares tips for making your home safe and accessible 15:25 Share this episode 27:26 Have you downloaded the free RealTalk MS app? 27:46 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email: https://realtalkms.com/325 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: A Low-Fat Diet Improves Fatigue in Multiple Sclerosis: Results from a Randomized Controlled Trial https://journals.sagepub.com/doi/10.1177/13524585231208330 STUDY: Diet-Induced Changes in Functional Disability are Mediated by Fatigue in Relapsing-Remitting Multiple Sclerosis: A Secondary Analysis of the WAVES Randomized Parallel-Arm Trial https://journals.sagepub.com/doi/full/10.1177/20552173231209147 STUDY: Exploring the Cost-Effectiveness of EBV Vaccination to Prevent Multiple Sclerosisin an Australian Setting https://jnnp.bmj.com/content/early/2023/11/02/jnnp-2023-332161 PARTICIPATE: The PROMS Initiative Survey https://proms-initiative.org/survey-proms VIDEO: Cognitive Challenges in Progressive MS https://youtube.com/watch?v=bN26GrRZMts 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 325 Guest: Tracy Carrasco Privacy Policy

Duration:00:28:57