MS-Perspektive - The Multiple Sclerosis Podcast

Nele Handwerker
MS-Perspektive - The Multiple Sclerosis Podcast

In the MS-Perspektive Podcast, I present my view of multiple sclerosis and show you how you can make the best of the diagnosis. Because a beautiful and fulfilling life is also possible with multiple sclerosis. Here you will find information and strategies on how you can actively influence your course. In addition, I publish solo articles with my experiences, interview experts and on various topics related to living with MS as well as other affected people. In addition, there are a few episodes that serve the relaxation, positive attitude and stimulation.

  1. 1 NGÀY TRƯỚC

    New Research for Managing Primary Progressive Multiple Sclerosis (PPMS) an ECTRIMS Special

    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. "},"no_headings_message":"No headings were found on this page.","minimize_box":"yes","minimized_on":"tablet","hierarchical_view":"yes","min_height":{"unit":"px","size":"","sizes":[]},"min_height_tablet":{"unit":"px","size":"","sizes":[]},"min_height_mobile":{"unit":"px","size":"","sizes":[]}}" data-widget_type="table-of-contents.default"> 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.

    31 phút
  2. 22 THG 1

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

    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. "},"no_headings_message":"No headings were found on this page.","minimize_box":"yes","minimized_on":"tablet","hierarchical_view":"yes","min_height":{"unit":"px","size":"","sizes":[]},"min_height_tablet":{"unit":"px","size":"","sizes":[]},"min_height_mobile":{"unit":"px","size":"","sizes":[]}}" data-widget_type="table-of-contents.default"> 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.

    29 phút
  3. 15 THG 1

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

    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. "},"no_headings_message":"No headings were found on this page.","minimize_box":"yes","minimized_on":"tablet","hierarchical_view":"yes","min_height":{"unit":"px","size":"","sizes":[]},"min_height_tablet":{"unit":"px","size":"","sizes":[]},"min_height_mobile":{"unit":"px","size":"","sizes":[]}}" data-widget_type="table-of-contents.default"> 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.

    27 phút
  4. 8 THG 1

    Hidden Challenges – Exploring Smoldering MS with Prof. Gavin Giovannoni

    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. "},"no_headings_message":"No headings were found on this page.","minimize_box":"yes","minimized_on":"tablet","hierarchical_view":"yes","min_height":{"unit":"px","size":"","sizes":[]},"min_height_tablet":{"unit":"px","size":"","sizes":[]},"min_height_mobile":{"unit":"px","size":"","sizes":[]}}" data-widget_type="table-of-contents.default"> 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.

    1 giờ 3 phút
  5. 1 THG 1

    Effects of the Mediterranean diet on MS an ECTRIMS Special

    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! "},"no_headings_message":"No headings were found on this page.","minimize_box":"yes","minimized_on":"tablet","hierarchical_view":"yes","min_height":{"unit":"px","size":"","sizes":[]},"min_height_tablet":{"unit":"px","size":"","sizes":[]},"min_height_mobile":{"unit":"px","size":"","sizes":[]}}" data-widget_type="table-of-contents.default"> 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.

    28 phút
  6. 25/12/2024

    Aging with MS an ECTRIMS Special

    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. "},"no_headings_message":"No headings were found on this page.","minimize_box":"yes","minimized_on":"tablet","hierarchical_view":"yes","min_height":{"unit":"px","size":"","sizes":[]},"min_height_tablet":{"unit":"px","size":"","sizes":[]},"min_height_mobile":{"unit":"px","size":"","sizes":[]}}" data-widget_type="table-of-contents.default"> 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.

    33 phút
  7. 18/12/2024

    Empowering the MS Community: Advocacy, Diversity, and Inclusion with patient expert Roxy Murray

    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. "},"no_headings_message":"No headings were found on this page.","minimize_box":"yes","minimized_on":"tablet","hierarchical_view":"yes","min_height":{"unit":"px","size":"","sizes":[]},"min_height_tablet":{"unit":"px","size":"","sizes":[]},"min_height_mobile":{"unit":"px","size":"","sizes":[]}}" data-widget_type="table-of-contents.default"> 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.

    49 phút
  8. 11/12/2024

    New treatment strategies in MS an ECTRIMS Special

    Learn more about new treatment for MS, focusing on innovative therapies like engineered vesicles, CAR-T, CD40L and high-dose vitamin D. To read the full article visit my blog article: https://ms-perspektive.com/091-new-treatment-strategies This time, I will present some studies on new treatment options for MS that show promising results and were presented at ECTRIMS 2024. Some candidates are not that new, such as high-dose vitamin D, but the key here is the long-term observation of a large number of MS patients under clearly defined conditions. Furthermore, there are engineered extracellular vesicles (EVs), CAR-T cell therapies and CD40L inhibitors such as frexalimab. These therapies represent a shift towards targeted treatments that aim to modulate the immune system in a more precise way, without the severe side effects of current medications. It’s about the research behind these novel approaches, their potential benefits, and the possibility of achieving better outcomes for patients, especially in the progressive stages of the disease. Listen to the episode or read the post to stay up to date on how these innovations could change the future of MS treatment. "},"no_headings_message":"No headings were found on this page.","minimize_box":"yes","minimized_on":"tablet","hierarchical_view":"yes","min_height":{"unit":"px","size":"","sizes":[]},"min_height_tablet":{"unit":"px","size":"","sizes":[]},"min_height_mobile":{"unit":"px","size":"","sizes":[]}}" data-widget_type="table-of-contents.default"> Table of Contents Why are new therapies important? Engineered small extracellular vesicles targeting regulatory T cells via CD40L signaling in multiple sclerosis Overview of CAR-T therapy in autoimmune diseases Future of new therapies in MS: CAR-T, CD40L and others Long-term outcomes of phase-1 study of neural stem cell transplantation in progressive multiple sclerosis High-dose cholecalciferol reduces multiple sclerosis disease activity after a clinically isolated syndrome : results of a 24-month placebo-controlled randomized trial (D-lay MS) Safety and Efficacy of Frexalimab in the Treatment of Relapsing Multiple Sclerosis: 18-month Results from the Phase 2 Open-Label Extension 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.

    27 phút

Giới Thiệu

In the MS-Perspektive Podcast, I present my view of multiple sclerosis and show you how you can make the best of the diagnosis. Because a beautiful and fulfilling life is also possible with multiple sclerosis. Here you will find information and strategies on how you can actively influence your course. In addition, I publish solo articles with my experiences, interview experts and on various topics related to living with MS as well as other affected people. In addition, there are a few episodes that serve the relaxation, positive attitude and stimulation.

Có Thể Bạn Cũng Thích

Bạn cần đăng nhập để nghe các tập có chứa nội dung thô tục.

Luôn cập nhật thông tin về chương trình này

Đăng nhập hoặc đăng ký để theo dõi các chương trình, lưu các tập và nhận những thông tin cập nhật mới nhất.

Chọn quốc gia hoặc vùng

Châu Phi, Trung Đông và Ấn Độ

Châu Á Thái Bình Dương

Châu Âu

Châu Mỹ Latinh và Caribê

Hoa Kỳ và Canada