Episodios

  • Enhancing MS Patient Quality of Life with Digital Self-Management

    Enhancing MS Patient Quality of Life with Digital Self-Management
    Aug 1 2024
    In this enlightening episode of "BeeWellwith MS," Dr. Agne Straukiene explores the transformative role of digital platforms in the self-management of multiple sclerosis (MS). Joined by Finn Moxson, an experienced MS coordinator, the discussion delves into the integration of technology into patient care, emphasizing the importance of self-management and the significant impact of digital health tools.Key Topics Covered:
    1. Importance of Self-Management in MS:
      • The role of self-management in enhancing the quality of life for people living with MS.
      • The limitations of conventional assessment tools like the Expanded Disability Status Scale (EDSS) and the Multiple Sclerosis Functional Composite (MSFC).
    2. Digital Health Tools:
      • Introduction to the Patient Knows Best (PKB) digital platform used at Torbay Hospital.
      • Real-world outcomes from the PKB User Experience Project.
      • Integration of patient-reported outcomes (PROMs) into MS management to capture the full spectrum of the patient experience.
    3. Global Patient Reporting Outcomes Initiative:
      • The initiative’s aim to bridge the gap between clinical research and patient care by integrating patient-reported outcomes.
      • The significance of patient voices in shaping effective care strategies.More info read here: Frontiers | The global patient-reported outcomes for multiple sclerosis initiative: bridging the gap between clinical research and care – updates at the 2023 plenary event (frontiersin.org)
    4. Challenges and Solutions in Digital Platform Implementation:
      • Addressing digital literacy and cognitive issues among the MS population.
      • Strategies for improving recruitment and engagement with digital platforms.
    5. Future Directions and Innovations:
      • Plans for further development of digital tools, including augmented reality for motor and cognitive function assessment.
      • The importance of interconnected health records and a unified approach to patient-reported outcomes.
    Guest Insights: Finn Moxson shares his background in psychology and his experience as a clinical research practitioner. He discusses his role in coordinating the PKB platform, the benefits observed from its use, and the positive feedback from patients. He emphasizes the necessity of continuous communication and education to ensure successful engagement with digital tools.

    Call to Action: Listeners are encouraged to engage with digital health tools, participate in surveys and questionnaires, and contribute to the ongoing improvement of MS management. Agne and Finn invite listeners to share their experiences and join the conversation on social media and the podcast’s website.

    Closing Note: Self-management is a vital aspect of living well with MS, and digital tools offer empowering support. By incorporating these tools into daily routines, patients can take a proactive role in managing their health and improving their quality of life.

    Contact Information: Listeners can reach out with questions, comments, and suggestions for future episodes through social media channels or the podcast’s website at www.beewellwithms.com

    Prisms Toxonomy article: The PRISMS taxonomy of self-management support: derivation of a novel taxonomy and initial testing of its utility - PubMed (nih.gov)

    Our Connect plus app: CONNECTPlus App: MS Case Study | Health and Care Innovations (hci.digital)

    Stay Connected: Follow "BeeWellwithMS" on social media for more resources and updates.

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    47 m
  • Finding Peace and Compassion: A Guided Meditation for Chronic Conditions

    Finding Peace and Compassion: A Guided Meditation for Chronic Conditions
    Jul 22 2024
    Agne, a neurologist, leads a guided meditation focused on giving and receiving to help individuals with chronic conditions. The meditation aims to cultivate inner strength, acceptance, and compassion. Participants are encouraged to create a comfortable and safe space for a relaxing experience.

    Become a supporter of this podcast: https://www.spreaker.com/podcast/beewellwithms-podcast-by-dr-agne-straukiene--5762905/support.
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    9 m
  • Summer Survival Guide: Keeping Your Cool with MS

    Summer Survival Guide: Keeping Your Cool with MS
    Jun 26 2024
    In this episode of 'BeeWellwithMS' podcast, host Dr. Agne Straukiene Neurologist discusses the impact of heat waves on individuals with multiple sclerosis (MS), particularly focusing on the Uthoff's phenomenon and pseudorelapse. She explains that increasing body temperature can temporarily worsen MS symptoms and provides strategies to manage overheating, including using various cooling gear like vests, scarves, hats, portable fans, and cooling towels. Additionally, Dr. Straukiene offers practical advice on staying cool, such as seeking air-conditioned environments, staying hydrated, taking breaks, and consulting healthcare providers for persistent symptoms.

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    7 m
  • Revolutionising MS Care: Bringing Augmented Reality (AR) into MS Patients' Homes for Assessment

    Revolutionising MS Care: Bringing Augmented Reality (AR) into MS Patients' Homes for Assessment
    Jun 15 2024
    In this engaging episode of BeeWellwithMS, Dr. Agne Straukiene hosts and guest speaker Associate Professor Will Young from the University of Exeter dive deep into the transformative potential of augmented reality (AR) and motion and cognitive tracking technologies in multiple sclerosis (MS) care. They explore the exciting MS PARAMS Phase One Study, which aims to validate these innovative tools for assessing motor and cognitive functions in MS patients. Professor Young shares his fascinating journey through research in rehabilitation psychology and sensory cueing, shedding light on the profound impact AR could have on enhancing patient care. They discuss the study's goals, the technical challenges to anticipate, and the promise these technologies hold in making MS assessments more accurate and personalized. Listeners are invited to get involved in this groundbreaking research, with detailed information on how to participate in the study. This episode is not just informative; it’s a call to action for anyone eager to contribute to the future of MS care. Join us, as we envision a future where cutting-edge technology empowers both clinicians and MS patients, ensuring better management and improved outcomes. Your involvement could be the key to unlocking a revolutionary approach to MS care. Don't miss out! If you are interested in learning more about the PARAMS phase one study, contact Prof Young at W.Young@exeter.ac.uk.

    Episode Breakdown:
    • 00:00 Introduction to BeeWellwithMS Podcast
    • 00:36 Meet Associate Prof. Will Young: A Pioneer in AR Research
    • 01:11 Exploring the MS PARAMS Phase One Study
    • 01:34 The Journey into Augmented Reality
    • 03:52 Technical Validation and Study Objectives
    • 07:01 Challenges and Benefits of AR in MS Care
    • 19:10 Participant Recruitment Process and Study Details
    • 30:44 Conclusion and How to Get Involved
    Tune in and discover how you can be part of this innovative step forward in MS care.

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    43 m
  • Breaking Barriers: MS Awareness Day Interviews

    Breaking Barriers: MS Awareness Day Interviews
    May 25 2024
    A series of interviews and discussions highlighting the importance of raising awareness for multiple sclerosis (MS) at Torbay and South Devon NHS Foundation Trust.

    00:00 Introduction
    01:47 Interview with Finn Moxon - Importance of Raising Awareness
    03:30 Interview with Suzanne ( MS Society) - Spreading Awareness
    05:08 MS Admin Team Insights
    04:56 Importance of Early Identification - Sarah Hughes MS nurse
    06:00 Engagement with the coleagues experts
    07:08 Encouraging Lifestyle Management
    09:50 Closing Remarks


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    11 m
  • Navigating the Intersection: Functional neurological disorder (FND) in the World of MS

    Navigating the Intersection: Functional neurological disorder (FND) in the World of MS
    May 23 2024
    In this episode of 'BeeWellwithMS' podcast, Dr. Leo Russell, a principal clinical psychologist at the Devon Partnership in Exeter, shares his expertise on functional neurological disorder (FND) and its interplay with multiple sclerosis (MS). Dr. Russell discusses the nature of functional symptoms, their psychological roots, and the implications for patients. He emphasizes the importance of a multidisciplinary approach in treatment, including psychotherapy. The conversation delves into Intensive Short-Term Dynamic Psychotherapy (ISTDP) as an effective therapy for FND and other conditions, highlighting the importance of recognizing and processing emotions. The episode underscores the interconnectedness of physical and psychological health and provides practical guidance for managing chronic conditions.


    00:00 Introduction to Dr. Leo Russell
    01:33 Overview of Functional Neurological Disorder (FND)
    02:19 Understanding Functional Symptoms
    11:05 The Connection Between Emotions and Physical Symptoms
    12:52 Exploring the Psychological Aspects of FND
    23:47 The Impact of Chronic Conditions on Mental Health
    24:35 Strategies for Managing Life with MS
    34:46 Therapeutic Approaches and Psychotherapy
    30:21 Finding Support and Resources
    51:07 Conclusion and Closing Thoughts


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    52 m
  • The Future of Ageing: Exploring Longevity Medicine with Dr Marco Quarta

    The Future of Ageing: Exploring Longevity Medicine with Dr Marco Quarta
    Apr 24 2024
    Embark on an enlightening journey with Dr. Marco Quarta through the innovative realm of longevity medicine and aging research. Delve into groundbreaking research on combating age-related diseases, rejuvenating senescent cells with RNA-based therapies, and the quest to revolutionize our approach to health and longevity. Gain insights into measuring biological age, the challenges of eternal life, and the promising advancements in anti-aging therapies. This podcast explores the future of longevity medicine, offering hope and understanding for future medical breakthroughs for long term conditions such as Multiple sclerosis.

    00:00 Welcome to BeeWellWithMS: Exploring Longevity Medicine
    00:20 Dr. Marco Quarta: A Pioneer in Aging and Regenerative Medicine
    03:08 The Personal Mission Behind Dr. Quarta's Research
    07:42 Understanding Longevity Medicine: A Deep Dive
    14:25 The Intersection of Aging and Multiple Sclerosis
    17:36 The Promising Future of Senolytics in Treating Aging
    24:55 Navigating the World of Supplements and Personalized Care
    33:03 Challenges and Opportunities in Longevity Medicine Research
    35:40 Exploring Predictive Health Tools and Challenges
    36:27 The Importance of Supplement Quality and Brand
    37:38 Senolytics: The Zombie Cell Hunters
    39:20 Revolutionizing Medicine with Cellular Rejuvenation
    44:35 The Potential for Human Longevity and Ethical Considerations
    51:59 Understanding Biological Clocks and Aging
    59:04 The Future of Anti-Aging Therapies and Longevity Medicine
    01:03:05 Navigating Resources for Longevity Medicine

    Useful resources on longevity medicine:
    www.phaedon.institue
    Website of Rubedo: www.rubedolife.com
    Website of Turn is www.turn.bio



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    1 h y 8 m
  • Shaping the Future of MS Treatment: The Role of Generics and Biosimilars with high cost drugs pharmacist Lucy Wessels

    Shaping the Future of MS Treatment: The Role of Generics and Biosimilars with high cost drugs pharmacist Lucy Wessels
    Apr 10 2024
    In this episode we delve into the evolving landscape of multiple sclerosis treatment, focusing on generics and biosimilars. It features a conversation with pharmacist Lucy Wessels, highlighting the safety, effectiveness, and cost benefits of generics and biosimilars in managing MS. The discussion emphasizes the importance of patient education, collaborative decision-making with healthcare providers, and dispelling misconceptions like the 'nocebo' effect around these treatment option.

    00:00 Welcome and Introduction to the Episode
    01:06 Understanding Generics and Biosimilars in MS Treatment
    03:42 Diving Deeper: The Difference Between Generics and Biosimilars
    11:58 Addressing Concerns: Side Effects and Tolerability
    14:34 Enhancing Patient Understanding and Acceptance
    20:22 The Nocebo Effect and Its Impact on Treatment Perception
    24:34 Future of MS Treatment: Embracing Generics and Biosimilars
    31:52 Concluding Thoughts and Key Takeaways

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    35 m