Breaking It Down – A Multiple Sclerosis Podcast

Episode: Living with Progressive MS: Therapies, Treatments & Daily Strategies
Hosts: Nick & Helena (MS Trust)
Guests: Dr. Emma Tallentire (Cardiff University), Gemma & Ali (MS Trust Information Team)
Date: April 22, 2025

Episode Overview

This episode takes an in-depth look at living with progressive Multiple Sclerosis (MS)—covering current therapies, symptom management, lifestyle adaptations, new research, and support resources. MS Trust hosts Nick and Helena speak first with neurologist and researcher Dr. Emma Tallentire to unpack the complexities of progressive MS care, before turning to the in-house information team (Gemma and Ali), who discuss their new comprehensive guidebook for people experiencing MS progression.

Key Discussion Points & Insights

1. The Landscape of Progressive MS Treatments

Timestamps: 03:12–05:40

• Assumptions & Shifting Realities:
  It’s a common belief, both among patients and health professionals, that progressive MS has few or no treatment options compared to relapsing-remitting MS.
• Current Medications:
  • Sipanomide: Available in the UK for secondary progressive MS (SPMS) with inflammatory activity.
  • Ocrelizumab: Licensed for primary progressive MS (PPMS) with evidence of inflammation.
  • Interferon: Sometimes opted for by SPMS patients.
• Beyond Medications:
  • Lifestyle: Physical activity, diet, and sleep remain foundational.
  • Symptom Management: Bladder/spasticity/fatigue management are key.
  • Rehabilitation & Allied Therapies: Central to care alongside any medication.

“It’s worth thinking from the simplest through to the most complex things... we shouldn’t underestimate treatment to do with lifestyle, physical activity, diet, and sleep.”
— Dr. Emma Tallentire [04:11]

2. The Role of Rehabilitation and Multidisciplinary Care

Timestamps: 05:40–09:54

• Physical (Physio) Therapy:
  • Outlined as more than just ‘classic’ physiotherapy—emphasis should be on accessible, enjoyable physical activity tailored to individual barriers and preferences.
• Occupational Therapy:
  • Support with employment, reasonable adjustments, social activity, fatigue, and living independently.
  • Example: “Down to Earth” allotment gardening scheme for social and functional adaptation.
• Psychological Therapy:
  • While not always embedded in MS specialist services, helps with mood, cognition, and adapting to chronic illness.
• Teamwork:
  • OTs and MS nurses are “unsung heroes”—involved in everything from equipment provision to fatigue management.

“OTs are a little bit like the unsung heroes in the MS treatment world, aren’t they?”
— Helena [09:32]

3. Prioritizing and Reviewing Symptom Management

Timestamps: 10:01–14:33

• Individual Agenda Setting:
  • Patients should prepare a list of their top concerns before clinic visits to steer the conversation and get their needs met.
• Medication Review:
  • Advised at least annually (ideally more often).
  • Bring an up-to-date medication list; consider what’s still working, side effects, and interactions.
  • Discuss with pharmacist or doctor, especially if also seeing a GP.
• Empowerment:
  • Patients are encouraged to share their judgments about what works for them, rather than just relying on clinician advice.

“It’s important to feel like you’re listened to when you say: actually, I’ve tried that, but for me, it wasn’t the right thing.”
— Dr. Emma Tallentire [13:29]

4. The Research Pipeline and Why Progress is Slow

Timestamps: 16:17–24:08

• Recent Progress:
  • Ongoing trials like Hercules (BTK inhibitors), Perseus, and Chariot (cladribine)—some showing promise for slowing progression.
• Future Directions:
  • Neuroprotection and remyelination (repairing nerve coverings) under investigation.
  • Octopus trial uses a novel approach to test multiple treatments efficiently (repurposed drugs such as metformin and alpha lipoic acid).
• Barriers to Research:
  • Slow progression in MS requires long-term studies and better short-term (surrogate) markers.
  • Practical issues: NHS resources, recruiting sites and participants, funding challenges.
  • Collaboration (e.g., Progressive MS Alliance) instead of duplication is accelerating progress.

“The research focus has really changed... certainly the huge unmet need is the modification of progressive MS.”
— Dr. Emma Tallentire [16:42]

5. The Multidisciplinary Team—Who’s Involved?

Timestamps: 24:08–28:31

• Beyond Doctors:
  • MS nurses, physiotherapists, occupational therapists, speech & language therapists, wheelchair/orthotic specialists, pharmacists, continence advisors.
  • Roles explained—for example, orthotists help with devices for foot drop; speech therapists help with swallowing/communication; pharmacists increasingly integral to medication management.
  • Social workers and third sector organizations essential for practical and financial support.

“You have to see your neurologist or your MS nurse as your sort of care provider, but almost project manager linking in with all of those different services.”
— Dr. Emma Tallentire [27:17]

6. Making the Most of Your Appointments

Timestamps: 28:31–32:08

• Annual Reviews:
  • Standard for most with progressive MS, though frequency may depend on need.
  • Bring a prioritized list, written medication record, and know how to contact your team between visits.
  • Ask about communication options for follow-up questions.

“Maybe one question everybody should be asking is: how do I contact you in between my appointments?”
— Dr. Emma Tallentire [31:31]

7. Lifestyle, Complementary Therapies, and Self-Management

Timestamps: 32:11–45:15

• Lifestyle:
  • Healthy diet (no consensus on ‘best diet,’ but healthy eating, ideal body weight, and vitamin D are evidence-backed).
  • Physical and cognitive activity—tailored to preference and ability—are hugely beneficial.
  • Stopping smoking has a proven benefit in MS.
  • Prioritize sleep hygiene; good sleep can be ‘revolutionary’ for fatigue and quality of life.
  • Mood and social engagement tied closely to outcome.
• Complementary Therapies:
  • Little robust trial evidence, but clinicians will support low-risk, affordable options that make people feel better.
  • Always check for possible medication interactions and avoid expensive, unproven regimens.
  • Discuss all supplements and therapies with your MS/pharmacy team.

“If you feel it helps you and it’s not harming you and it’s not costing you the earth, then I think that’s okay.”
— Dr. Emma Tallentire [35:17]

8. New Book Highlight: "Progression in MS"

Timestamps: 46:48–57:42

• Why a New Book:
  • Previous guides on progressive MS were outdated; new research and changing understanding led to a completely rewritten, consolidated volume.
• Audience & Content:
  • For anyone experiencing progression, regardless of MS type.
  • Includes: navigating diagnosis, living with uncertainty, symptom management, adapting family/social/work life, comprehensive explanation of new terminology (“smouldering,” “PIRA,” etc.), the importance of lifestyle.
  • Chapters informed by health professionals and people with progressive MS.
• Development Process:
  • Involvement of multi-disciplinary experts and patients.
  • Peer review and inclusion of real-life experiences.
• Key Messages:
  • Even in the absence of a “cure,” lifestyle factors make a big difference; patients should feel proactive and empowered.
  • The book is a reference to dip in and out of—not meant to be read in one go.

“One of the strongest themes... is with the lack of really effective treatments for progression at the moment, just how important lifestyle and wellbeing factors are and looking after yourself.”
— Ali [55:40]

Notable Quotes & Memorable Moments

• “OTs are a little bit like the unsung heroes in the MS treatment world, aren’t they?”
  — Helena [09:32]

• “It’s important to feel like you’re listened to when you say: actually, I’ve tried that, but for me, it wasn’t the right thing.”
  — Dr. Emma Tallentire [13:29]

• “The future is promising because of the way in which trials are being designed... and also the way that the international community is working together.”
  — Dr. Emma Tallentire [23:44]

• “If someone was able to manage their sleep, mood, cognitive activity, physical activity, their diet and their weight... I think the effect size would probably be even bigger than some medications.”
  — Dr. Emma Tallentire [42:26]

• “All those lifestyle and wellbeing factors... they’re all things that you can control and help you feel a sense of control with a condition that can be unpredictable as well.”
  — Gemma [56:31]

Episode Timeline & Timestamps

• 00:05–02:55 – Introduction, episode overview
• 02:55–45:15 – Interview with Dr. Emma Tallentire (progressive MS therapies, symptom management, research, multidisciplinary teamwork, lifestyle and well-being)
• 46:37–57:42 – Discussion with Gemma and Ali (content team) about the new "Progression in MS" book: development, structure, feedback from people with MS, and main takeaways
• 57:42–59:04 – Reflections from hosts, practical recommendations
• (Ad-free remainder: general signposting and wrap-up)

Practical Takeaways

• Annual medication reviews are crucial; come prepared.
• Lifestyle changes—diet, exercise, social engagement, and sleep—are as important as drug treatments in progressive MS.
• The MS Trust’s new book, "Progression in MS," serves as a reference for anyone navigating the challenges of progression.
• Stay proactive: know your team, ask questions, and be informed about new research and resources.
• Contact the MS Trust helpline or visit their website for more support, including accessing the new book for free.

Resources

• MS Trust Helpline: 0800-03-23839 (Mon–Fri, 10am–4pm)
• Book ("Progression in MS"): mstrust.org.uk/shop
• MS Trust general resources: mstrust.org.uk