#096: From Fatigue to Focus. The Power of Sleep and Exercise in Managing MS an ECTRIMS Special

MS-Perspektive - The Multiple Sclerosis Podcast

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محتوای ارائه شده توسط Nele Handwerker. تمام محتوای پادکست شامل قسمت‌ها، گرافیک‌ها و توضیحات پادکست مستقیماً توسط Nele Handwerker یا شریک پلتفرم پادکست آن‌ها آپلود و ارائه می‌شوند. اگر فکر می‌کنید شخصی بدون اجازه شما از اثر دارای حق نسخه‌برداری شما استفاده می‌کند، می‌توانید روندی که در اینجا شرح داده شده است را دنبال کنید.https://fa.player.fm/legal

<div class="span index">1</div> <span><a class="" data-remote="true" data-type="html" href="/series/all-about-change">All About Change</a></span>

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All About Change

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۸ hours پیش۸h ago

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How do we build an inclusive world? Hear intimate and in-depth conversations with changemakers on disability rights, youth mental health advocacy, prison reform, grassroots activism, and more. First-hand stories about activism, change, and courage from people who are changing the world: from how a teen mom became the Planned Parenthood CEO, to NBA player Kevin Love on mental health in professional sports, to Beetlejuice actress Geena Davis on Hollywood’s role in women’s rights. All About Change is hosted by Jay Ruderman, whose life’s work is seeking social justice and inclusion for people with disabilities worldwide. Join Jay as he interviews iconic guests who have gone through adversity and harnessed their experiences to better the world. This show ultimately offers the message of hope that we need to keep going. All About Change is a production of the Ruderman Family Foundation. Listen and subscribe to All About Change wherever you get podcasts. https://allaboutchangepodcast.com/

حدود یک سال پیش 27:16

MP3•خانه قسمت

Improving sleep quality is vital for managing MS, reducing fatigue, enhancing cognitive function, and boosting overall well-being.

You can find the complete summary on my blog: https://ms-perspektive.com/096-sleep

Sleep is one of the most critical yet often underestimated aspects of managing MS. For many of us living with MS, poor sleep can worsen fatigue, brain fog, and other symptoms, making daily life even more challenging. The good news is that improving your sleep isn’t just possible—it can lead to meaningful improvements in your energy, mood, and overall well-being. In this summary from ECTRIMS 2024 papers, I’ll explore recent research on how sleep and physical activity interact in MS, along with tips to help you get the restorative rest you deserve.

Table of Contents

Good sleep is a cornerstone of managing MS and improving your quality of life. Small changes, like a consistent bedtime routine or light exercise, can have a big impact over time. Remember, you’re not alone in this journey, and each night of better rest brings you closer to more energized and fulfilling days. Take it one step—or one restful night—at a time, and know that you’re making a powerful investment in your health and well-being. You’ve got this!

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See you soon and try to make the best out of your life, Nele

For more information and positive thoughts, subscribe to my newsletter for free.

Click here for an overview of all podcast episodes published so far.

99 قسمت

#Fitness #Podcasting Education #Nele Handwerker

#096: From Fatigue to Focus. The Power of Sleep and Exercise in Managing MS an ECTRIMS Special

MS-Perspektive - The Multiple Sclerosis Podcast

published حدود یک سال پیش

اشتراک گذاری

MP3•خانه قسمت

Improving sleep quality is vital for managing MS, reducing fatigue, enhancing cognitive function, and boosting overall well-being.

You can find the complete summary on my blog: https://ms-perspektive.com/096-sleep

Table of Contents

---

See you soon and try to make the best out of your life, Nele

For more information and positive thoughts, subscribe to my newsletter for free.

Click here for an overview of all podcast episodes published so far.

99 قسمت

#Fitness #Podcasting Education #Nele Handwerker

همه قسمت ها

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#106: Trigeminal neuralgia and MS – an invisible challenge. Interview with Dr. Monika Köchling 19:35

۵ روز پیش19:35

19:35

MS patients can also suffer from trigeminal neuralgia, which is very painful. Dr. Köchling explains the treatment. Translated interview. You can read the full article including the treatment details on my blog: https://ms-perspektive.com/106-trigeminal-neuralgia This time, I've translated the German interview with Dr. Monika Köchling about the causes and treatment options for trigeminal neuralgia. Since this form of facial pain can lead to extreme restrictions in the quality of life, it is extremely important to treat it. The good news is that there are many approaches to controlling the pain or even getting rid of it completely. However, this can sometimes take a little longer and it is important to work with your doctors to find a solution and possibly try several approaches. The original interview was in German and I adapted it for the international MS community. Table of Contents Introduction Monika Köchling Basics of trigeminal neuralgia in MS Treatment options for trigeminal neuralgia in MS Effects of trigeminal neuralgia in MS Quickfire Q&A Farewell Introduction Monika Köchling I work in Grevenbroich, Germany, as a neurologist, psychiatrist and psychotherapist in a large group practice, the NeuroCentrum am Rheinlandklinikum. I live in Düsseldorf and am married for the second time. I also have two grown-up sons. My hobbies include singing in a choir, hiking and poetry. Finally, what is the most important message you would like to give to MS patients with trigeminal neuralgia? Attitude is crucial. Don’t despair. Become and remain resilient and dare to try new things. To quote Hilde Domin: “I put my foot in the air and it carried me.” --- Many thanks to Dr. Köchling for the in-depth insight into the treatment options for trigeminal neuralgia. See you soon and make the most of your life, Nele You can find more information and positive thoughts in my free newsletter. Here you will find an overview of all previous podcast episodes.…

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#105: The Sumaira Foundation & NMO: How One Woman’s Journey is Changing Lives Worldwide 40:17

12 روز پیش40:17

40:17

Sumaira Ahmed turned her NMOSD diagnosis into a global movement, founding The Sumaira Foundation to support patients and drive research. You can read through all questions and answers on my blog: https://ms-perspektive.com/105-tsf Neuromyelitis Optica Spectrum Disorder (NMOSD) is a rare autoimmune disease that can feel isolating and overwhelming. But for Sumaira Ahmed, her diagnosis became the spark that ignited a global movement. In this episode, we dive into her personal journey with NMO, the challenges she faced, and the resilience that led her to create The Sumaira Foundation (TSF)—an organization dedicated to raising awareness, supporting patients, and funding research for NMOSD and MOGAD. Sumaira shares raw insights into her diagnosis, the treatment landscape then vs. now, and how finding community changed everything. We also discuss the power of advocacy, the impact of TSF Ambassadors worldwide, and the exciting developments shaping the future of NMOSD care. Whether you’re a patient, caregiver, or simply interested in how one person can make a global difference, this conversation is filled with hope, inspiration, and practical insights. Table of Contents Introduction – Who is Sumaira Ahmed? Personal Journey with NMO Facing Challenges & Finding Strength The Sumaira Foundation (TSF) A Message for Other Patients Quickfire Q&A Session Farewell Introduction – Who is Sumaira Ahmed? Hi, everyone. My name is Sumaira Ahmed, and I’m a patient living with seronegative Neuromyelitis Optica Spectrum Disorder (NMOSD). I live in Boston, Massachusetts and was diagnosed 11 years ago after sudden vision loss and weakness. Six weeks after my symptoms started, I received my diagnosis. Just two months later, I founded The Sumaira Foundation, which is now 11 years old. I currently serve as the Executive Director. Finally, what advice would you give to someone who has just been diagnosed with NMO or another rare disease? Feel what you’re feeling—it’s okay to be sad, angry, or scared. Those emotions are valid, but don’t let yourself get stuck in them. There will be light at the end of the tunnel, even if it takes longer than expected. Believe in yourself. Our minds and bodies are capable of so much more than we think. If I had given up when I was told I had only a short time left, none of this would have happened. Don’t give up! How and where can interested people find you online? You can visit The Sumaira Foundation at www.sumairafoundation.org . The website is available in 25 languages so that people from around the world can access information in their native language. We are active on social media, and you can follow us on: Instagram , Facebook , LinkedIn , X (Twitter) , Blue Sky , TikTok , and YouTube On YouTube, we have hundreds of educational and empowerment videos for patients and caregivers. --- Nele von Horsten: That’s fantastic! Sumaira, thank you so much for your time and for sharing your incredible journey. I know I missed you at ECTRIMS in Milan, but I’m sure we’ll meet at another event soon! Sumaira Ahmed: Absolutely, Nele! I appreciate this opportunity, and I look forward to seeing you at a future event. See you soon and try to make the best out of your life, Nele For more information and positive thoughts, subscribe to my newsletter for free. Click here for an overview of all podcast episodes published so far.…

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#104: Leveraging AI in MS Care and Shared Decision-Making with Dr. Stefan Ebener 50:05

19 روز پیش50:05

50:05

AI is transforming Multiple Sclerosis (MS) care by enhancing Shared Decision-Making (SDM), improving diagnosis, personalizing treatments, and empowering patients—discover the future of AI in MS with Dr. Stefan Ebener. You can read the short version of the interview on my blog: https://ms-perspektive.com/104-ai-in-ms-care Artificial intelligence (AI) is reshaping the management of multiple sclerosis (MS), particularly in shared decision-making (SDM) between patients and healthcare professionals. From early diagnosis and personalized treatment recommendations to improving doctor-patient communication, AI-driven tools are enhancing how MS is understood and treated. In this interview, I speak with Dr. Stefan Ebener, an AI healthcare expert at Google, about the current and future role of AI in MS care. How can AI simplify complex medical data? What are its limitations? And how can it support MS patients in making informed treatment choices? Together, we explore the transformative potential of AI in MS care and the importance of balancing technological advancements with human expertise. Table of Contents Introduction – Who is Dr. Stefan Ebener? Understanding AI in Healthcare Shared Decision-Making with AI Improving Contact with Healthcare Providers Ensuring Privacy and Data Security Accessibility and Inclusivity Potential Challenges and Limitations Empowering Patients through AI Introduction – Who is Dr. Stefan Ebener? Dr. Stefan Ebener: My name is Dr. Stefan Ebener, and I lead an international team of experts at Google. Our goal is to help customers implement cutting-edge technologies for real-world applications, including AI solutions in healthcare. What advice would you give MS patients who are curious about using AI tools to manage their condition? Dr. Stefan Ebener: Be curious, but stay cautious. AI can be an excellent support tool, but always verify information and consult healthcare professionals before making medical decisions. Nele von Horsten: Stefan, thank you for your insights! AI has incredible potential, but as you’ve mentioned, it must be used wisely. Dr. Stefan Ebener: Thank you, Nele! It was a pleasure discussing AI’s role in MS care. Looking forward to seeing how AI continues to evolve in this space. --- See you soon and try to make the best out of your life, Nele For more information and positive thoughts, subscribe to my newsletter for free. Click here for an overview of all podcast episodes published so far.…

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#103: Can epigenetic research transform MS treatment? Insights into DNA methylation and MS progression with Dr. Majid Pahlevan Kakhki 42:26

26 روز پیش42:26

42:26

Discover how epigenetic research is transforming multiple sclerosis treatment by uncovering the role of DNA methylation, gene regulation, and potential new therapies for MS progression. You can read through all questions and answers on my blog: https://ms-perspektive.com/103-majid Have you ever wondered how epigenetic mechanisms influence multiple sclerosis (MS) progression and why some people experience rapid disease worsening while others have a milder course? Could there be hidden biological switches beyond genetics affecting MS? In this deep dive, I explore the fascinating world of epigenetics with Dr. Majid Pahlevan Kakhki, uncovering how factors like DNA methylation shape MS progression and treatment outcomes. Join me as we discuss groundbreaking research on how lifestyle, environment, and molecular modifications influence MS. Could epigenetic therapies hold the key to slowing or even reversing disease progression? Read on to find out how this cutting-edge science is paving the way for more personalized and effective MS treatments. Table of Contents Introduction – Who is Dr. Majid Pahlevan Kakhki? Introduction to Epigenetics and MS Genetic Factors and MS Progression Clinical Implications for MS Patients Epigenetic Therapies and Future Prospects Broader Impact of Epigenetic Research Quickfire Q&A Session Farewell Introduction – Who is Dr. Majid Pahlevan Kakhki? Sure! My name is Majid Pahlevan Kakhki, and I’m originally from Iran, specifically from the Khorasan province in the northeast of the country. My childhood was closely tied to agriculture, as I spent a lot of time working in the saffron fields alongside my parents. As I grew older, I wanted to support my education and gain independence, so I learned tailoring and became quite skilled at it. This allowed me to finance my studies while remaining self-sufficient. I pursued a Ph.D. in Molecular Genetics in Iran, and after completing my doctorate, I moved to Karolinska Institutet as a postdoctoral researcher. Since then, I have been working there, focusing on cutting-edge research in my field. Finally, what message of hope or encouragement would you like to share with the listeners? „Don’t give up. I know that some days can be tough, but please remember that researchers around the world, including myself, are working hard to find better treatments and solutions for you. I truly believe that one day, we will hear the news that MS is cured, and we’ll be able to focus our research on curing other diseases.“ How and where can interested people follow your research activities? I have a LinkedIn profile ( https://www.linkedin.com/in/majid-pahlevan-kakhki ) and also the Karolinska Institute ( https://ki.se/en/people/majid-pahlevan-kakhki ) webpage where our research is reported. --- Many thanks to Majid and his colleagues for all the valuable research they are doing and the insights provided into it today. See you soon and try to make the best out of your life, Nele For more information and positive thoughts, subscribe to my newsletter for free. Click here for an overview of all podcast episodes published so far.…

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#102: MS and domestic violence and abuse (DVA). Raising awareness, offering support, creating change with Sue Britt 1:05:25

۵ weeks پیش1:05:25

1:05:25

MS patients especially women are at higher risk of ewxperiencing domestic violence and abuse. Awareness is key followed to create change. You can read through the questions and answers on my blog: https://ms-perspektive.com/102-dva Domestic violence and abuse (DVA) is a silent crisis affecting millions worldwide – but what happens when a chronic illness like multiple sclerosis is part of the equation? Living with MS brings unique challenges, from mobility issues to cognitive changes that can make recognizing and escaping abusive situations even more difficult. Research on the intersection of MS and domestic violence is still in its infancy, but a team from the universities of Leeds and Nottingham is working to change that. In the interview, I talk to Sue Britt, a chartered midwife, lecturer, and researcher at the University of Nottingham who is part of the study team, about how healthcare professionals respond to domestic violence and abuse in people with MS. With her background as a midwife and strong commitment to patient care, Sue sheds light on why people with MS—especially women—may face a higher risk of abuse, the warning signs to watch for, and how healthcare professionals can provide better support. If you or a loved one has MS and is concerned about domestic violence, this article provides insight, resources, and practical steps for seeking help. It is time to break the silence, raise awareness, and create meaningful change in the MS community. Sie sehen gerade einen Platzhalterinhalt von Podcast Player. Um auf den eigentlichen Inhalt zuzugreifen, klicken Sie auf den Button unten. Bitte beachten Sie, dass dabei Daten an Drittanbieter weitergegeben werden. Table of Contents Introduction – Who is Sue Britt? Understanding the Issue of Domestic Violence and Abuse (DVA) in MS The Connection Between MS and domestic violence and abuse Seeking Help and Support The Role of Research in Adressing domestic violence and abuse in MS Encouragement and Empowerment Quickfire Q&A Session Farewell Introduction – Who is Sue Britt? I am Sue. I’m actually a registered midwife by background and have a career in midwifery both as a clinical practitioner and a lecturer. Since 2022, I’ve been a full-time student at Nottingham University, where I’m exploring professional responses to domestic violence and abuse in people with MS. I’m married to Dave, we have three dogs Maxx, Jess and Pippa. Because I have three dogs, I enjoy walking and hiking, but I’m also very active in the gym. One fact about me that your listeners might find interesting is that my first degree was in German! I’ve also lived in Germany in the past and worked at the University of Erlangen as a Lektorin. Take care of yourself or your loved ones if you or they are affected by domestic violence or abuse. See you soon and try to make the best out of your life, Nele For more information and positive thoughts, subscribe to my newsletter for free. Click here for an overview of all podcast episodes published so far.…

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#101: Shared Decision Making and AI: Making the best decisions for MS together with Dr. Sven Jungmann 47:25

۶ weeks پیش47:25

47:25

How AI can improve shared decision making (SDM) for multiple sclerosis patients on their journey with Dr. Sven Jungmann. You can read the full interview on my blog: https://ms-perspektive.com/101-sdm-ai In today’s rapidly evolving healthcare landscape, the intersection of medicine and technology is transforming the way we approach patient care, treatment and long-term health management and artificial intelligence (AI) and shared decision making (SDM) is at the center of it all. Dr. Sven Jungmann, physician and entrepreneur combines two important areas of expertise. With his medical background and passion for tackling broader healthcare challenges, Dr. Jungmann has expanded his focus beyond the confines of hospitals and is committed to the power of digital solutions, artificial intelligence (AI) and automation in improving healthcare systems. In this interview, Dr. Jungmann discusses the critical role of AI and digital tools in the management of chronic conditions such as multiple sclerosis (MS) and provides insights into how technology can support both patients and healthcare providers. He also emphasizes the need for intelligent, ethically responsible healthcare solutions that free up doctors and nurses while improving the patient experience. Through his entrepreneurial activities, his writings and his research, Dr. Jungmann continues to advocate for change with the goal of creating more efficient, humane and patient-centered healthcare. Sie sehen gerade einen Platzhalterinhalt von Podcast Player. Um auf den eigentlichen Inhalt zuzugreifen, klicken Sie auf den Button unten. Bitte beachten Sie, dass dabei Daten an Drittanbieter weitergegeben werden. Table of Contents Introduction – Who is Dr. Sven Jungmann? Information on apps and digital solutions for people with MS General tips for evaluating and using digital health solutions Interaction of digital solutions and medical care AI and shared decision making Being an author Transforming power of AI Quickfire Q&A Session Farewell Introduction – Who is Dr. Sven Jungmann? It’s a pleasure to have the opportunity of making a small contribution here, Nele. Thank you so much. I’m a physician by training who realized early on that I wanted to tackle the bigger challenges in healthcare—beyond the walls of a single clinic or hospital. Don’t get me wrong: We absolutely need dedicated doctors and nurses who serve patients one-on-one. But I also believe we need people who can help multiply the impact of practitioners through technology, artificial intelligence (AI), and digital tools. Right now, too many healthcare systems are on the verge of financial collapse. We’re not training enough healthcare providers, and many of those who are trained end up frustrated by bureaucratic hurdles, way too many overhours, poor working conditions, and low payment (many people are still surprised when they find out how little many doctors actually earn). If we want sustainable, high-quality care, we need to embrace automation and digital solutions as much as possible in a smart, ethically responsible way. This includes everything from shared decision making to leveraging modern sensors and AI. Personally, I love working across different disciplines—whether with engineers, designers, psychologists, economists, or physicists. It stretches my thinking and brings such a diversity of perspectives. Being an entrepreneur compounds this thrill: practically everything becomes your playground, and while that can be intense (I’ll admit it’s hard to “switch off”), it’s also incredibly rewarding. How and where can interested people follow your research activities? I’d love for people to connect with me on LinkedIn , where I regularly share updates and insights. I’m also planning to get more active on YouTube with short talks and interviews about the intersection of healthcare, AI, and entrepreneurship. And my company’s new website will go live soon: www.aiomics.io --- I hope this interview has sparked your interest in trying out the new solutions available, while being aware of the possibilities and limitations of AI in shared decision making. See you soon and try to make the best out of your life, Nele For more information and positive thoughts, subscribe to my newsletter for free. Click here for an overview of all podcast episodes published so far.…

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#100: The Future of MS Care. Can Digital Twins Predict Your Disease Progression? With Prof. Tjalf Ziemssen 51:34

۷ weeks پیش51:34

51:34

Find out how digital twin technology based on AI and big data is transforming the treatment of Multiple Sclerosis by enabling personalized treatment, predicting disease progression, and optimizing patient management. You can read a shortened summary of the interview on my blog: https://ms-perspektive.com/100-digital-twin The concept of a digital twin is revolutionizing medicine, offering a new way to personalize treatments and predict disease progression. But what exactly does it mean for multiple sclerosis patients? In the 100th anniversary episode of the English MS-Perspektive Podcast, Prof. Tjalf Ziemssen, one of the world’s leading MS experts and innovators, explains how AI and big data are shaping the technology of digital twins to improve MS care. We discuss how this innovative approach differs from traditional monitoring tools, its potential for predicting disease progression, and how it could help neurologists adjust treatments sooner. Beyond medical care, digital twins can also support lifestyle adjustments and rehabilitation strategies. And they can show patients whether they are being well cared for or missing important checkups. Find out more about the real-world applications, current challenges and future possibilities of digital twin technology for people with MS. Sie sehen gerade einen Platzhalterinhalt von Podcast Player. Um auf den eigentlichen Inhalt zuzugreifen, klicken Sie auf den Button unten. Bitte beachten Sie, dass dabei Daten an Drittanbieter weitergegeben werden. Table of Contents Introduction Potential Benefits for MS Patients Realistic Applications & Current Challenges The Future of Digital Twins in MS Treatment Closing Thoughts & Call to Action Where can interested listeners follow your research or get involved? Prof. Tjalf Ziemssen: You can follow my work through academic publications , MS research platforms, and social media channels. We also encourage those interested to engage with patient organizations that support digital health initiatives. --- See you soon and try to make the best out of your life, Nele For more information and positive thoughts, subscribe to my newsletter for free. Click here for an overview of all podcast episodes published so far.…

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#099: Insights from Groundbreaking MS Studies on Risks, Trends, and Equity an ECTRIMS Special 25:52

۸ weeks پیش25:52

25:52

Learn more about epidemiology of MS including risks, trends and where clincial trials need to be revised for better equity. You can read the full article on my blog: https://ms-perspektive.com/99-epidemiology In this overview of papers from ECTRIMS 2024, I have selected studies that look at development and frequency and influence progression. You will learn about the role of Epstein-Barr virus infections and the effects of social and health inequalities on the course of MS. These studies also highlight the growing need for inclusion in clinical trials and the importance of monitoring MS trends worldwide. By exploring these insights, we can better understand the complexities of MS and learn how they shape the future of care and research for the MS community. Table of Contents 1. Risk and onset of multiple sclerosis after infectious mononucleosis (IM): a population-based study of >650,000 cases of IM 2. Rising prevalence of Multiple Sclerosis in Switzerland – Results from the Swiss Multiple Sclerosis Registry 3. Multiple Sclerosis in the Greenlandic population 4. African American and Non-Hispanic White people with multiple sclerosis: social determinants of health and health inequities. 5. Clinical Trial Awareness among African Americans --- See you soon and try to make the best out of your life, Nele For more information and positive thoughts, subscribe to my newsletter for free. Click here for an overview of all podcast episodes published so far.…

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#098: New Research for Managing Primary Progressive Multiple Sclerosis (PPMS) an ECTRIMS Special 31:22

۹ weeks پیش31:22

31:22

Latest treatments and research presented at ECTRIMS 2024 for managing primary progressive MS (PPMS). including innovative therapies like CAR T-cell therapy. You can read the full article on my blog: https://ms-perspektive.com/098-ppms-ectrims Primary Progressive Multiple Sclerosis (PPMS) presents unique challenges, as it often worsens without relapses and can significantly impact daily life. However, the growing body of research and treatment options is providing new hope for managing this condition. From exploring the effectiveness of established therapies like Ocrelizumab to cutting-edge advancements in CAR T-cell treatments, scientists and healthcare providers are uncovering ways to slow progression, improve outcomes, and enhance quality of life. This summary from ECTRIMS 2024 dives into the latest studies and innovations, offering insights to empower your MS journey. Table of Contents 1. Anti-CD20 therapies in drug-naive primary progressive multiple sclerosis patients: A multicenter real-life study 2. Design of KYSA-7, A Phase 2, Open-Label, Randomized, Multicenter Study of KYV-101, an Autologous Fully Human Anti-CD19 Chimeric Antigen Receptor (CAR) T-Cell Therapy, in Treatment Refractory Primary and Secondary Progressive Multiple Sclerosis 3. Efficacy and security of ocrelizumab in patients with primary progressive multiple sclerosis (ppms) in a tertiary care hospital multiple sclerosis unit 4. GA Depot (long-acting IM injection of glatiramer acetate) Impact on EDSS stability in Relapsing forms of Multiple Sclerosis (RMS) and Primary Progressive Multiple Sclerosis (PPMS) 5. Impact of age on safety and effectiveness outcomes in persons with relapsing and primary progressive multiple sclerosis treated with ocrelizumab in the German real-world CONFIDENCE study 6. Brain Volume Maps Identify Primary Progressive Multiple Sclerosis Patients at High Risk of Accelerated Atrophy --- Living with PPMS can feel overwhelming at times, but you are not alone. Research is advancing rapidly, with treatments and approaches designed to help slow progression, maintain independence, and enhance quality of life. Whether it’s monitoring your brain health, considering therapies like Ocrelizumab or GA Depot, or staying informed about revolutionary trials like CAR T-cell therapy, there is a growing arsenal of options to explore. Remember, your journey with MS is unique, and the best path forward is one tailored to your needs in collaboration with your healthcare team. Stay proactive, prioritize your well-being, and take comfort in knowing that science, advocacy, and community support are on your side. Every small step—whether it’s discussing a new treatment or making a lifestyle change—can bring you closer to a brighter future. Keep believing in your strength and the progress that’s being made for us and our community. See you soon and try to make the best out of your life, Nele For more information and positive thoughts, subscribe to my newsletter for free. Click here for an overview of all podcast episodes published so far.…

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#097: Late-Onset Multiple Sclerosis (LOMS): Symptoms, treatment options, and prognosis with Dr. Abdulkadir Tunc 28:55

10 weeks پیش28:55

28:55

Discover expert insights on Late-Onset Multiple Sclerosis (LOMS) from Assoc. Prof. Dr. Abdulkadir Tunç, a leading neurologist dedicated to advancing MS care and improving lives. You can read the interview on my blog: https://ms-perspektive.com/97-loms I am pleased to welcome Associate Professor Dr. Abdulkadir Tunç in this interview, a neurologist who has dedicated his career to understanding and treating multiple sclerosis (MS), including late-onset multiple sclerosis (LOMS). Dr. Tunç is passionate about helping people overcome the challenges of MS and improve their quality of life through personalized care and innovative research. Dr. Tunç’s continuing education, including his graduation from the renowned International Charcot MS Master’s Program, has given him an in-depth knowledge of the complexities of MS. He heads a neuroimmunology clinic at Sakarya University in Turkey, where he and his team specialize in finding the best treatments for each patient’s individual needs. Today, he shares insights into the management of LOMS and tips on how patients can live well with it. Table of Contents Introduction – Who is Assoc. Prof. Dr. Abdulkadir Tunc? Definition and Differences in Onset of LOMS Immunotherapies and Treatment Decisions Repair and Recovery Mechanisms Symptomatic Treatment and Quality of Life Prognosis and Progression of LOMS New Developments: BTK Inhibitors Quickfire Q&A Session Farewell Introduction – Who is Assoc. Prof. Dr. Abdulkadir Tunc? Assoc. Prof. Dr. Abdulkadir Tunc: Thank you for having me; it’s a pleasure to be here. I am Assoc. Prof. Dr. Abdulkadir Tunç, a neurologist specializing in neuroimmunology, particularly MS and autoimmune neuromuscular diseases. For over 10 years, I have been closely working with MS patients, providing care and contributing to research aimed at improving their quality of life. I am proud to have completed the prestigious International Charcot MS Master program, which deepened my understanding of MS and its management. Currently, I run neuroimmunology clinics at Sakarya University, where my team and I focus on personalized approaches to treatment. Beyond my clinical work, I actively participate in our national neurology study group and regularly attend international congresses to stay updated on the latest innovations in the field. On a personal note, I’m married and a father of two wonderful children. When I’m not working, I find joy in playing court tennis and swimming regularly—activities that help me recharge and maintain balance in my life. I believe that staying active and curious, both professionally and personally, is key to living fully. Finally, what message of hope or encouragement would you like to share with individuals living with MS? Assoc. Prof. Dr. Abdulkadir Tunc: To everyone living with MS, remember that you are not defined by this disease. Each day, we’re making progress in understanding MS and developing new treatments to improve lives. Stay hopeful, stay proactive, and never hesitate to lean on your support network. Together, we’re stronger, and together, we’ll continue moving forward. How and where can interested people follow your research activities? Assoc. Prof. Dr. Abdulkadir Tunc: You can follow my research and updates through academic platforms like ResearchGate or LinkedIn , where I share my latest publications and projects. I also collaborate with the MSBase Registry and participate in international MS-focused events, so stay tuned for updates from these communities as well. --- See you soon and try to make the best out of your life, Nele For more information and positive thoughts, subscribe to my newsletter for free. Click here for an overview of all podcast episodes published so far.…

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#096: From Fatigue to Focus. The Power of Sleep and Exercise in Managing MS an ECTRIMS Special 27:16

11 weeks پیش27:16

27:16

Improving sleep quality is vital for managing MS, reducing fatigue, enhancing cognitive function, and boosting overall well-being. You can find the complete summary on my blog: https://ms-perspektive.com/096-sleep Sleep is one of the most critical yet often underestimated aspects of managing MS. For many of us living with MS, poor sleep can worsen fatigue, brain fog, and other symptoms, making daily life even more challenging. The good news is that improving your sleep isn’t just possible—it can lead to meaningful improvements in your energy, mood, and overall well-being. In this summary from ECTRIMS 2024 papers, I’ll explore recent research on how sleep and physical activity interact in MS, along with tips to help you get the restorative rest you deserve. Table of Contents 1. Assessment of sleep quality and its relationship with physical activity in patients with Relapsing-Remiting Multiple Sclerosis 2. Sleep disorders and fatigue in multiple sclerosis: association and interaction. 3. Relationship between sleep disorders and information processing speed in multiple sclerosis 4. Ketogenic Diet in patients with Multiple Sclerosis: effect on Fatigue, Quality of Sleep and Sleepiness. 5. Adolescent sleep patterns, genetic predisposition, and risk of multiple sclerosis Good sleep is a cornerstone of managing MS and improving your quality of life. Small changes, like a consistent bedtime routine or light exercise, can have a big impact over time. Remember, you’re not alone in this journey, and each night of better rest brings you closer to more energized and fulfilling days. Take it one step—or one restful night—at a time, and know that you’re making a powerful investment in your health and well-being. You’ve got this! --- See you soon and try to make the best out of your life, Nele For more information and positive thoughts, subscribe to my newsletter for free. Click here for an overview of all podcast episodes published so far.…

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#095: Hidden Challenges – Exploring Smoldering MS with Prof. Gavin Giovannoni 1:03:29

12 weeks پیش1:03:29

1:03:29

Prof. Gavin Giovannoni explores the complexities of multiple sclerosis, the concept of "smoldering MS," and future treatment strategies. You can find the full transcript of the interview to read on my blog: https://ms-perspektive.com/95-smoldering-ms Welcome to today’s interview, in which I am accompanied by one of the most influential personalities in the field of multiple sclerosis, Prof. Gavin Giovannoni. Prof. Giovannoni is a renowned neurologist at the Royal London Hospital and a professor at Queen Mary University in London. Originally from South Africa, he has dedicated his career to understanding, treating and advancing research in multiple sclerosis (MS). Prof. Giovannoni is recognized for his groundbreaking insights and patient-centered approach and has significantly contributed to how we view and manage MS, particularly through his work on the concept of ’smoldering MS‘. In this interview, we’ll tap into his expertise and explore the complexities of MS, the evolving understanding of “smoldering MS”, and the future of treatment and management strategies. Whether you are a patient, carer, or healthcare professional, this conversation promises to be both informative and empowering. Table of Contents Introduction – Who is Prof. Gavin Giovannoni? Understanding Smoldering MS Treatment and Management Approaches Patient Perspectives and Challenges Quickfire Q&A Session Farewell Introduction – Who is Prof. Gavin Giovannoni? I am a neurologist at the Royal London Hospital and a professor at Queen Mary University in London. Originally from South Africa, I focus on research and treatment innovations in multiple sclerosis (MS), aiming to improve patient outcomes. Gavin, what message of hope would you like to share with people living with MS? There has never been a more promising time for MS research and care. With advancements in treatments and diagnostics, we are moving closer to a future where MS is not only manageable but potentially curable. Stay hopeful and proactive in managing your health. Where can interested people learn more about your work? I have a thing called MS Selfie. It stands for MS Self Management . Now, there’s a newsletter that’s on Substack. They can register for that. And then there’s a microsite. That’s a curated site for people for self-management. I usually do one or two newsletters a week. --- See you soon and try to make the best out of your life, Nele For more information and positive thoughts, subscribe to my newsletter for free. Click here for an overview of all podcast episodes published so far.…

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#094: Effects of the Mediterranean diet on MS an ECTRIMS Special 27:55

13 weeks پیش27:55

27:55

The mediterranean diet is healthy, tasty and contributes to a better quality of life when having MS from fatigue to brain health to mood. You can read the full article on my blog: https://ms-perspektive.com/94-mediterranean-diet This time, I have compiled papers on the Mediterranean diet that were presented at ECTRIMS 2024. The diet, which is high in fresh vegetables, fruits, nuts, olive oil, whole grains, and lean proteins, has been recommended for a long time. And the good thing is that it is more of a dietary approach that emphasizes healthy eating rather than prohibitions. The six studies presented show you how small lifestyle changes can have a big impact on your health and well-being. For example, the Mediterranean diet can support brain health, slow the progression of the disease, improve quality of life and even alleviate symptoms such as fatigue, anxiety and depression. Let these findings inspire you to make some delicious and health-promoting changes to your diet! Table of Contents 1. High adherence to the Mediterranean diet influences progressive Multiple Sclerosis course 2. Mediterranean Diet is Associated with a Proxy for Atrophy in Multiple Sclerosis 3. Mediterranean diet improves the quality of life in patients with Relapsing-remitting multiple sclerosis: our experience 4. Factors affecting psychological well-being index, adherence to medication, and Mediterranean diet in patients with multiple sclerosis 5. Differential DNA methylation significantly mediates the associations of Mediterranean diet with MS onset risk: results from the Ausimmune incident case-control study 6. A Higher Mediterranean Diet Score is Prospectively Associated with Better Mental Health and Quality of Life in a National Multiple Sclerosis Cohort --- See you soon and try to make the best out of your life, Nele For more information and positive thoughts, subscribe to my newsletter for free. Click here for an overview of all podcast episodes published so far.…

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#093: Aging with MS an ECTRIMS Special 33:07

14 weeks پیش33:07

33:07

Explore aging's impact on MS, highlighting research on cognition, inflammation, brain changes, and treatments. You can read the text version on my blog: https://ms-perspektive.com/093-aging-with-ms Living with multiple sclerosis in old age presents a unique challenge in understanding how the disease interacts with the natural aging process. This special ECTRIMS Review delves into groundbreaking studies exploring aging with MS, focusing on topics such as cognitive health, inflammation, brain changes, and diagnostic tools like OCT. Whether you are gaining insights into how MS develops in older age or looking for ways to proactively manage your health, this episode is packed with valuable information to help you navigate your path with confidence and knowledge. Table of Contents 1. Aging in People with Multiple Sclerosis: Cognitive Characteristics 2. Inflammaging and multiple sclerosis: inevitable partners in aging? 3. Aging intervenes in relationship between OCT and clinical or MRI outcome measures 4. Enlarged perivascular spaces are associated with brain microangiopathy and aging in multiple sclerosis 5. Levraging immunosenescence cellular signatures to evaluate the "immune-age": moving towards precision medicine in multiple sclerosis 6. Durable efficacy of cladribine tablets in an aging (> 50 years of age) MS patient population- A Real-World Experience --- Aging with MS can bring changes, but it also brings opportunities to refine the way you manage your disease. From understanding cognitive changes to taking advantage of new treatments and monitoring brain health, it’s important to stay informed and proactive. Remember: knowledge is power, and with the right strategies and support, you can continue to live a full life, regardless of your age. If any of these insights resonate with you, don’t hesitate to discuss them with your medical team and see how they can be applied to your treatment. See you soon and try to make the best out of your life, Nele For more information and positive thoughts, subscribe to my newsletter for free. Click here for an overview of all podcast episodes published so far.…

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#092: Empowering the MS Community: Advocacy, Diversity, and Inclusion with patient expert Roxy Murray 49:15

15 weeks پیش49:15

49:15

Roxy wants to empower underrepresented groups such as people of color or the LGBTQIA+ community to increase awareness of diversity in MS. You can read the short version of the interview here: https://ms-perspektive.com//92-roxy-murray In this episode, I am joined by Roxy Murray, also known as the “Multiple Sclerosis Fashionista” . Roxy is a passionate MS advocate, diversity and inclusion specialist, and a powerful voice for underrepresented communities in the chronic disease space. After being misdiagnosed and undergoing invasive treatments for eight years, Roxy turned her frustration into a drive for empowerment and advocacy. In our conversation, we delve into Roxy’s personal journey with MS, the challenges she faced as a young, queer woman of color in the healthcare system, and the ways she uses art, fashion , and community building to make the unseen seen. We also discuss the unique issues faced by LGBTQIA+ individuals with chronic illnesses and how representation in advocacy campaigns can drive meaningful change. Roxy’s message is clear: empowered patients empower others . Whether it’s through her bold fashion choices, storytelling on her podcast Sick and Sickening , or tireless advocacy for diversity, Roxy shows us that living with MS doesn’t mean sacrificing your identity, style, or voice. So listen in or read the short version of the interview and let Roxy’s energy and attitude encourage you to accept yourself as you are, no matter what challenges you face. Table of Contents Introduction - Who is Roxy Murray? Personal Experiences and Coping Strategies Diversity and Inclusion in Chronic Illness Advocacy Empowerment and Community Building The Role of Art, Design, and Fashion in Advocacy The Sick and Sickening Podcast: Goals and Impact Quickfire Q&A Session Farewell Introduction - Who is Roxy Murray? My name is Roxy Murray. I’ve been living with relapsing-remitting MS for 18 years, literally half my life. My first symptoms appeared when I was 18—I woke up with blindness in my right eye and double vision in my left. It was terrifying. At first, doctors suspected a brain tumor, then diagnosed me with lupus and other conditions like benign intracranial hypertension and anti-phospholipid syndrome. For eight years, I underwent invasive procedures like lumbar punctures every six to eight weeks without a correct diagnosis. Finally, at 26, after meeting a neurologist who took a fresh approach, I was correctly diagnosed with MS. She tested my spinal fluid and discovered oligoclonal bands. The mix of relief and anger I felt was overwhelming—I finally had an answer, but I had also endured years of unnecessary trauma. What message of hope would you like to share with those living with MS? You’re not alone. There’s a global community of MS warriors ready to support you at any time. How and where can interested people find you online? My website is www.themultiplesclerosisfashionista.com . I’m also on Instagram as @themultiplesclerosisfashionista and on LinkedIn as Roxy Murray. --- See you soon and try to make the best out of your life, Nele For more information and positive thoughts, subscribe to my newsletter for free. Click here for an overview of all podcast episodes published so far.…

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