Breaking it down - A multiple sclerosis podcast: Recent Episodes
MS Trust
Breaking it down - A multiple sclerosis podcast by the MS Trust brings together a range of voices from the MS community to cover all aspects of life with multiple sclerosis. Featuring a combination of expert advice and real life experiences from people with MS, episodes provide an in-depth insight into the impact MS symptoms can have and how they can be most successfully managed.
Send us a message about the podcast. For questions about MS please contact our helpline 0800 032 38 39
We often hear about the importance of brain health, but what does looking after your brain health mean when you're living with MS? And what practical steps can you take to support it every day?
In this episode of the MS Trust podcast, we speak with Consultant Neurologist Dr Agne Straukiene, about the everyday habits that can help support brain health. We discuss the role of movement, sleep, stress management, nutrition, cognitive wellbeing and other lifestyle factors that can help support thinking, memory and overall wellbeing.
We also spoke to Consultant Neurologist and Professor Nikos Evangelouand Postdoctoral Researcher Dr Silviaat the MS Trust Conference where we discussed how people with MS can make meaningful and sustainable changes to improve wellbeing and how to set realistic goals to help these changes.
Episode notes:
-Brain health and MS - Information from the MS Trust: mstrust.org.uk/a-z/brain-health
-Exercise and MS - Information from the MS Trust: mstrust.org.uk/information-support/exercise-ms
- Diet and MS - Information from the MS Trust: mstrust.org.uk/information-support/diet-ms
- Lifestyle Choices - Information from the MS Trust: mstrust.org.uk/information-support/wellbeing-ms/lifestyle-choices
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Sleep and MS - Information from the MS Trust mstrust.org.uk/information-support/wellbeing-ms/sleep
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Avoiding the brain drain in MS how to keep your mind fit and fed - Podcast from the MS Trust mstrust.org.uk/information-support/podcasts/avoiding-brain-drain-ms-how-keep-your-mind-fit-and-fed
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Bee Well with MS podcast -podcast from Dr Agne Straukiene
Send us a message about the podcast. For questions about MS please contact our helpline 0800 032 38 39
Fatigue is one of the most common and misunderstood MS symptoms. In this episode, we explore what MS fatigue really is, the emotional weight it can carry, and practical ways to manage fatigue in daily life. We're joined by Helen Cole, occupational therapist; Ruth Stross, MS nurse and Director of Services and Health Professional Lead at the MS Trust; and Dr Rebecca McGuire, Associate Professor in Psychology who lives with MS herself. Together we discuss all aspects of MS fatigue, from how to avoid the "boom and bust" cycle through pacing and planning, to navigating feelings of guilt and frustration when fatigue stops you doing things the way you used to.
Episode Notes
Information on fatigue from MS Trust: mstrust.org.uk/a-z/fatigue
Living with fatigue booklet: shop.mstrust.org.uk/publications/living-with-fatigue/
Telling people at work that you have MS: shop.mstrust.org.uk/publications/telling-people-at-work-that-you-have-ms/
Ask the Expert coping with fatigue: mstrust.org.uk/news/expert/ask-expert-coping-ms-fatigue
Learning to listen to fatigue - a personal story on fatigue: mstrust.org.uk/news/stories/learning-listen-fatigue
Fatigue, more than just being tired - a personal story on fatigue: mstrust.org.uk/news/stories/fatigue-more-just-being-tired
Online fatigue management course from MS Society www.mssociety.org.uk/about-ms/signs-and-symptoms/fatigue/managing-fatigue/online-fatigue-management-course
Miles for MS challenge: mstrust.org.uk/event/miles-ms
Send us a message about the podcast. For questions about MS please contact our helpline 0800 032 38 39
In this episode of the MS Trust podcast, We take a closer look at corticosteroids and how they’re used to treat MS relapses. Joined by MS nurse Mavis Ayer and MS specialist pharmacist Stavroula Charisi, we break down what steroids actually do, when they’re recommended, and why experiences can vary so much.
We talk about:
When steroids should (and shouldn’t) be used
How steroid treatment is given
Possible side effects and how they’re monitored
What to expect during and after a course
Listen now to better understand the role of steroids in treating MS relapses.
Show notes:
Steroids for MS relapses
mstrust.org.uk/a-z/steroids-methylprednisolone
Managing MS relapses
mstrust.org.uk/information-support/ms-symptoms-diagnosis/managing-ms-relapses
Treatment finder
mstrust.org.uk/information-support/ms-drugs-treatments/treatment-finder
Diary of a steroid taker by Carla King, a personal story from MS Trust - mstrust.org.uk/news/stories/diary-a-steroid-taker-carla-king
Send us a message about the podcast. For questions about MS please contact our helpline 0800 032 38 39
Getting an MS diagnosis can be straightforward for some people, but for many it’s a long, confusing journey filled with uncertainty. In this episode, we explore one of the questions the MS Trust is asked most often: How is MS actually diagnosed?
We look at why diagnosis can take time, what tests are involved, why symptoms aren’t always obvious, and what happens when tests give unclear results.
We’re joined by Professor Alasdair Coles, neurologist and MS specialist, who guides us through the current diagnosis process from first symptoms to MRIs, lumbar punctures, evoked potentials, OCT scans, and what will happen after the point of diagnosis.
Episode notes
- How MS is diagnosed - info from the MS Trust
- Lumbar puncture - info from the MS Trust
- Evoked potentials - info from the MS Trust
- McDonald criteria - info from the MS Trust
- Disease modifying drugs (DMDs) - info from the MS Trust
- Limbo land - what you can do while you wait for an MS diagnosis - MS Trust podcast
- Wellbeing and MS - information hub to help you support your emotional wellbeing
Video resources from MS Trust
- What happens in a Neurological examination?
- What is a Lumbar Puncture?
- What is an Optical Coherence Tomography (OCT) test?
Send us a message about the podcast. For questions about MS please contact our helpline 0800 032 38 39
Living with persistent MS-related pain isn’t just a physical challenge it can take a big toll on your emotional wellbeing and mental health too. In this episode, we explore the psychological impact of chronic pain.
We are joined by Dr Phillip Simpson, Consultant Clinical Psychologist with over 20 years of NHS experience, and Heather Daly, who shares her personal journey of living with MS and chronic pain, as we explore topics such as
- What chronic pain really means and how it affects the mind
- The emotional challenges of living with persistent MS pain
- How psychological therapies such as CBT, ACT, and mindfulness can help
- Practical coping strategies, acceptance, and behaviour change techniques
If you are living with long term MS and what to explore different approaches to cope with it psychologically, this is the episode for you
Episode notes
- Pain and MS - info from the MS Trust
- Treating nerve pain in MS - info from the MS Trust
- Pain resources - info from the MS Trust
- Mindfulness and MS - info from the MS Trust
- Wellbeing and MS - information hub to help you support your emotional wellbeing
Resources mentioned by Dr Phil Simpson
livewellwithpain.co.uk - website with resources and information
paintoolkit.org - focused on self management and has been created by an expert by experience
flippinpain.co.uk- focused on challenging misconceptions about pain problems.
Send us a message about the podcast. For questions about MS please contact our helpline 0800 032 38 39
In this special bonus episode of the MS Trust Podcast, mindfulness teacher Justin Standfield shares two guided meditations designed to help ease the challenges of living with MS pain. You’ll hear a shorter practice for pain awareness and relief, plus a longer meditation created especially for chronic pain. These two meditations can offer practical tools to bring comfort and calm whenever pain feels overwhelming.
Episode notes
- Pain and MS - info from the MS Trust
- Treating nerve pain in MS - info from the MS Trust
- Pain resources - info from the MS Trust
- Mindfulness and MS - info from the MS Trust
- Wellbeing and MS - information hub to help you support your emotional wellbeing
- MS and mindfulness with Justin Standfield - Video with Justin from MS Trust's YouTube
- Can mindfulness really help with my MS? - podcast from the MS Trust with Justin
Send us a message about the podcast. For questions about MS please contact our helpline 0800 032 38 39
Neuropathic pain or nerve pain is one of the most challenging symptoms of MS, unpredictable, intrusive, and often invisible. In this episode, we focus on what people can do themselves, at home, to ease that pain and take back some control. We talk to lead pain specialist nurse Katherine Dyer and mindfulness teacher Justin Standfield who share practical strategies and calming techniques that can make a real difference. We also meet the MS Trust helpline team and learn more about the vital support they provide to people affected by MS.
Episode notes:
Episode notes
- Pain and MS - info from the MS Trust
- Treating nerve pain in MS - info from the MS Trust
- Pain resources - info from the MS Trust
- Mindfulness and MS - info from the MS Trust
- Wellbeing and MS - information hub to help you support your emotional wellbeing
- MS and mindfulness with Justin Standfield - Video with Justin from MS Trust's YouTube
- Donate to MS Trust helpline - info from the MS Trust
A selection mindfulness apps (not reviewed or endorsed by the MS Trust)
- Headspace
- Calm
- Insight Timer
Send us a message about the podcast. For questions about MS please contact our helpline 0800 032 38 39
In this episode we explore the biggest breakthroughs from ECTRIMS 2025, the world’s largest MS research conference. We look into new treatment insights, the push for inclusive research, and how people with MS can shape the future of care.
Featuring Brett Drummond from MS translate, Natalie Busari from The Nerve of My MS, Dr. Claire Winchester research and engagement, at MS Trust , and Lucy Taylor our MS Trust CEO
Episode notes
- ECTRIMS 2025 news round-up- news from the MS Trust
- Criteria used to diagnose MS updated - news from the MS Trust
- ECTRIMS patient Community - video recordings from the day
- MS and Cognition - info from MS Trust
- Diet and MS - info from MS Trust
- Leave a gift in your will - info from MS Trust
- MS Trust new strategy - info from MS Trust
- The Nerve of My Multiples Sclerosis - Natalie Busari Instagram
Send us a message about the podcast. For questions about MS please contact our helpline 0800 032 38 39
In this episode of the MS Trust Podcast, we explore the MS Hug—one of the most confusing and uncomfortable symptoms of multiple sclerosis. From tight banding and rib cramps to stitch-like pain and breathlessness, we unpack what it feels like, why it happens, and how to manage it. Neurologist Kate Petheram joins us to explain the science behind the symptom, and we hear from people living with MS who share their personal experiences and tips for coping with this unwelcome embrace.
Episode Notes
The MS Hug - info from the MS Trust: mstrust.org.uk/a-z/ms-hug
MS Pain - info from the MS Trust: mstrust.org.uk/a-z/pain
Stream for MS - Fundraising challenge from MS Trust: mstrust.org.uk/get-involved/fundraising-and-events/ms-trust-exclusives/streamforms
Send us a message about the podcast. For questions about MS please contact our helpline 0800 032 38 39
If you live with multiple sclerosis and struggle to get a good night sleep, this episode is for you. We uncover the hidden impact of night-time MS symptoms—from nerve pain, spasms, and restless legs to bladder urgency, burning sensations, and cold feet—and explore why these issues often seem to worsen after dark.
Featuring insights from Associate Professor Rod Middleton from the UK MS Register and practical advice from Clinical Associate Professor & Honorary Consultant in Rehabilitation Laura Edwards, try to we answer your questions and share strategies to ease those night time symptoms symptom.
Episode Notes
Night time symptoms - information from The MS Trust: https://mstrust.org.uk/news/expert/night-symptoms-and-ms
Sleep and MS - information from The MS Trust: mstrust.org.uk/information-support/wellbeing-ms/sleep
Focus on sleep problems - information from the MS Trust: mstrust.org.uk/news/expert/focus-sleep-problems-ms
Sleep and MS podcast - podcast from MS Trust: mstrust.org.uk/information-support/podcasts/sleep-problems-ms
Heat sensitivity and MS - podcast from MS Trust: mstrust.org.uk/information-support/podcasts/heat-sensitivity-and-ms
Why do you keep needing to get up to go to the loo during the night? - information from The MS Trust: mstrust.org.uk/news/why-do-you-keep-needing-get-go-loo-during-night
UK MS register: ukmsregister.org
Send us a message about the podcast. For questions about MS please contact our helpline 0800 032 38 39
Worried about falling or unsure what to do if you do fall? You're not alone. Falls are a common concern for people living with multiple sclerosis.
In this episode, expert physio Hilary Gunn breaks down why people with MS are more prone to falling. Discover how to spot the early warning signs and learn what steps to take if a fall occurs. We also delve into simple, effective strategies to build strength, boost confidence, and help you keep moving safely with MS.
Listen now to hear real life stories, expert information and more.
Donate to the MS Trust to support this podcast - donate.mstrust.org.uk
Episode notes
Falls mstrust.org.uk/a-z/falls - information from MS Trust
Balance mstrust.org.uk/a-z/balance - information from MS Trust
Will asks the expert about balance and dizziness mstrust.org.uk/information-support/podcasts/will-asks-expert-about-balance-and-dizziness - podcast from MS Trust
Functional exercises to support everyday tasks
mstrust.org.uk/information-support/exercise-ms/exercises-support-everyday-tasks - workout videos to help with getting up from the floor and balance
Before beginning any new exercise or activity, please consult with your GP or MS care team. If you experience pain or discomfort, stop immediately and speak to your physiotherapist. Always listen to your body and make choices that are right for you.
Send us a message about the podcast. For questions about MS please contact our helpline 0800 032 38 39
Relationships can be complicated, even at the best of times. When one partner is living with MS, it can bring a whole host of new challenges as well as opportunities for deeper connection.
In this podcast, we explore the emotional and practical realities of supporting a partner with MS, and how couples can support each other through changing dynamics.
Psychologist Dr Ashley Brown joins us to share practical advice on how to open up conversations around intimacy, emotional support, and shifting roles in a relationship. She offers tips to help both partners feel heard, valued, and connected.
We also hear from Sophie and Delvin, a couple living with MS. Sophie shares her experience of living with multiple sclerosis, while Delvin reflects on his role as the partner who supports her.
Together, they speak honestly about how their relationship has evolved, the challenges they’ve faced, and the ways their bond has strengthened.
If you live with MS or support someone in their journey, this podcast offers practical tips, shared experiences and re-assurance that you’re not alone.
Listen now to hear real life stories, expert information and more.
Donate to the MS Trust to support this podcast - donate.mstrust.org.uk
Episode notes
Supporting someone with MS - information for carers - information from the MS Trust - mstrust.org.uk/information-support/care-and-carers/information-for-carers
Caring for someone with MS - Podcast from MS Trust - mstrust.org.uk/information-support/podcasts/caring-someone-ms
Anxiety and MS mstrust.org.uk/a-z/anxiety
Relationships and MS mstrust.org.uk/news/expert/relationships-and-ms
MS and your emotions: mstrust.org.uk/information-support/wellbeing-ms/ms-and-your-emotions
Advance care planning - information from the MS Trust - mstrust.org.uk/a-z/advance-care-planning
www.relate.org.uk a uk counselling service
www.gottman.com a website that offers a service designed to help couples overcome relationship challenges and enhance their communication
www.cosrt.org.uk UK’s professional body dedicated to Psychosexual and Relationship Therapies
Send us a message about the podcast. For questions about MS please contact our helpline 0800 032 38 39
Spasticity and spasms are common MS symptoms that vary from person to person and can be challenging to understand and manage.
In this episode, we explore how these symptoms can feel with the help of our MS community and what you can do about them.
We asked MS specialist physiotherapist Wendy Hendrie to share her near 40 years of experience with us.
We are very glad we did, because we learned such a huge amount. In fact, so much so that we can almost guarantee you will too in the next hour.
And this know-how could make a real difference to the way you understand and approach your spasticity and spasms.
She breaks these complex symptoms down in a way that’s easy to follow. She explores trigger factors, including pain – even pain you can’t feel due to loss of sensation – bladder and bowels, posture and positioning including pelvis alignment and head movement. Plus exercise, night spasms and the importance of getting medication reviews especially if you haven’t seen your MS team in a while.
Episode notes
- Spasticity and spasms - MS Trust information
- What do MS spasticity and muscle spasms feel like? - MS Trust information
- Managing spasticity and spasms - MS Trust information
- Download or order our free book on Managing spasticity and spasms - MS Trust information
- Learn what may be triggering your spasticity and spasms
- Thrower B et al.
Recognition, Description, and Variability of Spasticity in Individuals With Multiple Sclerosis and Potential Barriers to Clinician-Patient Dialogue: Results From SEEN-MSS, a Large-Scale, Self-Reported Survey
International Journal of MS Care. 2024; 26 (2): 75-80
Summary - Peer support: join our MS Trust Facebook community (public group)
- Peer support: join our Advanced MS Care and Support Facebook community (private group)
- Spoon theory explanation video
Send us a message about the podcast. For questions about MS please contact our helpline 0800 032 38 39
Talking about living with MS can be a tough thing to do, but open and honest conversations are vital in building understanding for the condition. In this special episode for MS Awareness Week 2025, we explore the power of MS conversations—why they matter and how they can make a difference.
This MS Awareness Week, we're working with the MS Society, MS Together, MS-UK, Neuro Therapy Network, Overcoming MS, Shift.ms and Talks with M.S. to shine a light on conversations and why they're important.
So in this episode Dr Claire Winchester, Head of Engagement at the MS Trust, joins us to discuss the essential resources available to help people navigate discussions about MS with friends, family, colleagues or health professionals. Plus, Helena sits down with the CEO and founder of MS Together Amy Thompson to reflect on real-life MS conversations they have had and the lessons learned from them.
Tune in and be part of the dialogue!
Show notes
mstrust.org.uk/get-involved/ms-awareness-week - all information you need to get started having those important MS Conversations
Send us a message about the podcast. For questions about MS please contact our helpline 0800 032 38 39
Have you been told "nothing can be done" to treat progressive MS? Then this is the episode for you. Join Nick and Helena as they debunk this myth with the expertise of neurologist Dr. Emma Tallantyre, exploring current medical and non-medical treatments, effective symptom management, and rehabilitation therapies.
Plus, get the inside scoop on the MS Trust's new book, "Progression in MS," from its creators. Get informed, feel supported, and discover the resources available to help you make sense of progressive MS.
Episode notes
Progression in MS free book from MS Trust
mstrust.org.uk/a-z/secondary-progressive-ms - secondary progressive MS info from the MS Trust
mstrust.org.uk/a-z/primary-progressive-ms - primary progressive MS info from the MS Trust
mstrust.org.uk/information-support/wellbeing-ms/ms-and-your-emotions - MS and your emotions info from the MS Trust
www.facebook.com/groups/advancedmscareandsupport - MS Trust facebook group for people with advanced MS and their carers.
www.facebook.com/groups/multiplesclerosistrust - MS Trust facebook group
Send us a message about the podcast. For questions about MS please contact our helpline 0800 032 38 39
In this bonus episode, we share some people with MS journeys of coming to terms with a progressive MS diagnosis. Adam, who lives with secondary progressive MS, is joined by his wife and carer, Sharon. Together, they reflect on how they navigate the complexities of their shared experience, from the emotional challenges to the practical ways they've found balance and connection.
Yvonne, living with primary progressive MS, opens up about how she dealt with her diagnoses, the initial shock and anger, and how she gradually discovered ways to regain a sense of control.
Episode notes
mstrust.org.uk/a-z/secondary-progressive-ms - secondary progressive MS info from the MS Trust
mstrust.org.uk/a-z/primary-progressive-ms - primary progressive MS info from the MS Trust
mstrust.org.uk/information-support/wellbeing-ms/ms-and-your-emotions - MS and your emotions info from the MS Trust
www.facebook.com/groups/advancedmscareandsupport - MS Trust facebook group for people with advanced MS and their carers.
www.facebook.com/groups/multiplesclerosistrust - MS Trust facebook group
instagram.com/meyouandmultiplesclerosis - Adam and Sharon's instagram account
Send us a message about the podcast. For questions about MS please contact our helpline 0800 032 38 39
Receiving the news that your MS is progressing can be a life-altering moment. In this podcast episode, we explore the emotional impact of this change and the journey towards acceptance and adjustment.
Helena and Nick are joined by Dr Angeliki Bogosian, a health psychologist specialising in MS, who shares insights on coping strategies, the importance of psychological support, and how mindfulness can help with emotional adjustment.
We also hear real-life stories from Adam and Sharon, as well as Yvonne, who open up about their experiences of living with progressive MS. From the initial shock and frustration to finding ways to regain control and maintain a fulfilling life, their stories are brimming with honesty and useful tips.
Whether you're newly diagnosed, supporting a loved one, or navigating changes in your MS, this episode is here to remind you that you’re not alone
Listen now for expert information, real-life experiences, and practical ways to move forward with confidence.
Episode notes
Progression in MS free book from MS Trust
mstrust.org.uk/a-z/secondary-progressive-ms - secondary progressive MS info from the MS Trust
mstrust.org.uk/a-z/primary-progressive-ms - primary progressive MS info from the MS Trust
mstrust.org.uk/information-support/wellbeing-ms/ms-and-your-emotions - MS and your emotions info from the MS Trust
www.facebook.com/groups/advancedmscareandsupport - MS Trust facebook group for people with advanced MS and their carers.
www.facebook.com/groups/multiplesclerosistrust - MS Trust facebook group
instagram.com/meyouandmultiplesclerosis - Adam and Sharon's instagram account
Send us a message about the podcast. For questions about MS please contact our helpline 0800 032 38 39
From challenges to special moments: advanced MS comes with a whole heap of them both. Listen now to hear three different perspectives: a person living with advanced MS, a carer and a health professional.
We’re tackling advanced MS in this podcast episode of ‘Breaking it down’.
Disclaimer: we discuss some sensitive topics in our interviews, including difficult MS symptoms and death.
We hear from Advanced MS Champion, Michelle Black, about how she supports people living with MS and what she sees, day in, day out.
Plus, Mark Webb talks us through his life with advanced MS, from indoor skydiving to daily challenges. We also catch up with Jen, who cared for her husband Dave until he sadly passed away. She takes us through their routine, community and those special moments together.
Ready to learn alongside us and hear the stories from our guests? Listen now.
Episode notes
mstrust.org.uk/a-z/advanced-ms - info from the MS Trust
mstrust.org.uk/health-professionals/programmes/advanced-ms-champions-programme - info about the MS Trust Advanced MS Champions programme
www.facebook.com/groups/advancedmscareandsupport - MS Trust facebook group for people with advanced MS and their carers.
onemanandhiscatheters.com - Mark Webbs blogg
facebook.com/groups/MSCarersClubUK- carers group on Facebook Jen talk about
www.n-compass.org.uk - organisation that helped Jen get counselling
Send us a message about the podcast. For questions about MS please contact our helpline 0800 032 38 39
Join us for a jargon busting, myth smashing podcast where we explore baffling multiple sclerosis terms and common misconceptions.
Ever heard terms like PIRA, RAW, or smouldering MS that’ve left you scratching your head and asking for a translation to plain English?
Better yet, have you been on the receiving end of a baffling tale involving one of the many MS myths out there?
“My friend Gary told me that exercise is bad for MS, so don’t bother.”
Yep, we’ve heard them all too. That’s why we’re here with a jargon busting, myth smashing podcast where we separate the wheat from the chaff, the fact from fiction and get to the honest truth.
We interview consultant neurologist, Dr Kate Petheram who cuts through multiple sclerosis jargon to give us easily accessible information. Plus, we catch up with Stephen, who lives with MS, and Simon from the MS Trust team to dispel some common MS myths.
Ready to learn more? Then listen now for all of the latest trusted information, tips and updates.
Show Notes
- MS Trust Helpline
- MS Trust Shop - Here you can download all MS Trust publications for free
- Supporting the MS Trust - information from the MS Trust
- MS Trust Facebook Group - join our facebook group
- mstrust.org.uk/a-z/- MS Trust - Here you can find explanation of MS jargon
- mstrust.org.uk/information-support/about-ms/what-is-ms#myths-misunderstandings - MS myths and misunderstandings
- mstrust.org.uk/news/focus-fact-or-fiction - Article written by Simon on how to fact check information
- mstrust.org.uk/information-support/work-money-legal/working-life - MS Trust information about work and MS
Call our free helpline on 0800 032 38 39 for practical information you can trust. Or email ask@mstrust.org.uk. We're here weekdays from 10am to 4pm, except bank holidays.
Send us a message about the podcast. For questions about MS please contact our helpline 0800 032 38 39
What questions have the MS community been asking in 2024? We took to social media and analysed our helpline enquiries to find out.
Dr Claire Winchester and Corinne from our helpline team take us through the topics and explore the available information, support and self-management strategies.
Plus, we cover some of the more unusual things that you’ve been asking about, like tattoos, Botox and lip fillers. Ready to find out more?
Listen now for trusted information, tips and more.
Show Notes
- MS Trust Helpline
- MS Trust Shop - Here you can download all MS Trust publications for free
- Supporting the MS Trust - information from the MS Trust
- MS Trust Facebook Group
- mstrust.org.uk/a-z/fatigue - MS Trust information about fatigue
- mstrust.org.uk/information-support/newly-diagnosed - MS Trust information for the newly diagnosed
- mstrust.org.uk/information-support/work-money-legal/working-life - MS Trust information about work and MS
- mstrust.org.uk/information-support/home-and-travel/equipment - MS Trust information about equipment
- mstrust.org.uk/a-z/botulinum-toxin-botox MS Trust information about botox
- mstrust.org.uk/a-z/mcdonald-criteria MS Trust information about about the McDonald's Criteria
- mstrust.org.uk/news/think-you-know-how-spot-uti - Think you can spot an UTI - info from the MS Trust
Call our free helpline on 0800 032 38 39 for practical information you can trust. Or email ask@mstrust.org.uk. We're here weekdays from 10am to 4pm, except bank holidays.
Send us a message about the podcast. For questions about MS please contact our helpline 0800 032 38 39
Is public transport derailing your life? We caught up with Meg Barnett (Transport For All), Flora (MS Trust helpline), Richard Sprenger and Antoinette Mohamed on public transport tips, helpful information and all the latest resources.
“It’s just really complicated. I hate having medical appointments because it’s so difficult to get to them.” - Antoinette
Does this sound familiar? If public transport is derailing your life, you’re not alone.
Between all of the planning, symptom management, inaccessible stations and social interactions, public transport can feel like you’ve got a one-way ticket to exhaustion on the fatigue express.
In fact, 77% of people in our study reported feelings of isolation due to barriers in transport and travel.
That’s why we caught up with Meg Barnett from the charity Transport For All, Flora from the MS Trust helpline team, MS Trust Ambassador Richard Sprenger and regular MS Trust blogger Antoinette Mohamed.
Our podcast guests talk us through their public transport wins and the inevitable disaster journeys. Plus, we hear about helpful apps, journey planning tips and where to turn to when our travels go severely off-track.
Whilst we know that we can’t wave a magic wand and fix public transport for the MS community, this episode might just give you a little more confidence the next time you’re setting sail on an adventure.
Listen now for all of the latest trusted information and tips.
Episode Notes
Driving and Transport - info from MS Trust
mstrust.org.uk/information-support/home-and-travel/driving-and-public-transport
Life changing: getting around with MS - information from MS Trustmstrust.org.uk/news/life-changing-getting-around-ms
Transport for All - www.transportforall.org.uk
Passenger Assistance - passengerassistance.com
Citymapper - travel planner app - citymapper.com/?lang=en
MS Trust Facebook Group
Send us a message about the podcast. For questions about MS please contact our helpline 0800 032 38 39
Are you wondering how to stay productive while managing MS? Perhaps you are looking for ways to disclose your diagnosis without derailing your career? Then join us as we delve into the topic of MS at work.
Hosts Nick and Helena explore the impact of Multiple Sclerosis in the workplace and share strategies for Bringing Your MS to Work.
We have a jam-packed show with four fantastic guests:
- Dr. Blanca de Dios Pérez, a postdoctoral Research Fellow at the University of Nottingham, who shares her research aimed at helping people with MS stay in the workforce for as long as they choose with the help of vocational rehab.
- Amy and Sam from the charity “MS Together” discuss their personal journeys with MS in the workplace and the supportive conversations they have been having within their community.
- Jane, recently diagnosed with MS, shares her experience of revealing her diagnosis at work,
Tune in to hear these stories and get some ideas in managing MS in your workplace. Let’s bring your MS to work!
Episode Notes
- MS Trust web page on Working life with MS: mstrust.org.uk/life-ms/your-finances/working-life
- Bring your MS To work Campaign mstrust.org.uk/get-involved/bring-your-ms-work - Fundraising Campaign from MS Trust
- MS Together mstogether.org/ - MS charity for young people with MS
- Volunteer at the MS Trust mstrust.org.uk/get-involved/volunteering
- Working life and MS mstrust.org.uk/information-support/podcasts/working-life-and-ms - Podcast episode about MS and your rights at work
Other work resources that might be useful
- MS Awareness Week webinar on work and MS: mstrust.org.uk/get-involved/ms-awareness-week/work-and-ms-webinar
- MS Trust web page on Working life with MS: mstrust.org.uk/life-ms/your-finances/working-life
- MS Trust web page on Legal advice: mstrust.org.uk/life-ms/your-finances/legal-advice
- MS Trust A-Z Equality Act: mstrust.org.uk/a-z/equality-act
- Law Centres offer legal advice, casework and representation: lawcentres.org.uk
- Citizens Advice: citizensadvice.org.uk/work/rights-at-work
- Access to work: gov.uk/access-to-work/apply
- Acas gives employees and employers free, impartial advice on workplace rights, rules and best practice: acas.org.uk/
Send us a message about the podcast. For questions about MS please contact our helpline 0800 032 38 39
What is a driving assessment? Does your mind conjure up memories of your driving test? Do you see a 17-year-old version of yourself panicking and sweating?
Well, the second part of our podcast series on driving and multiple sclerosis covers everything that you need to know.
Occupational therapist, Wendy Valentine and driving assessor, James Hinkins take us through the roadmap on driving assessments, car adaptions, the DVLA and more!
We find out how the assessors are there to promote your independence and keep you on the road for as long as they can.
Oh, and don’t forget to check out part one where we heard all about the Motability Scheme and MS.
If you’ve ever felt worried about driving and MS, this is the podcast for you. Start your engines and join us as we motor through all the latest tips and information on driving and MS.
Episode Notes
Driving and Transport - info from MS Trust
mstrust.org.uk/information-support/home-and-travel/driving-and-public-transport
Driving with MS -info from MS Trust mstrust.org.uk/news/driving-ms-what-you-need-know
How car adaptations gave me my independence back - blog from MS Trust: mstrust.org.uk/news/stories/how-car-adaptations-gave-me-my-independence-back
www.drivingmobility.org.uk - info from Driving mobility UK
Send us a message about the podcast. For questions about MS please contact our helpline 0800 032 38 39
Driving when you live with MS might make you feel like you’re stuck at a red light.
You might start to ask questions. Who do I need to tell about my diagnosis? Can I still drive to see my family and friends? What adaptions do I need?
Well, our two-part podcast special should give you some answers and dispel a few myths.
In part one, we’re joined by Claire Winchester, MS Trust Head of Info and Engagement. She shares insights from a recent survey exploring how MS affects travel and transportation.
Plus, we hear from Motability's Ross Smith to learn more about their scheme and how it can help people with MS stay independent.
Listen now to learn helpful driving tips, information and more!
Episode Notes
Driving and Transport - info from MS Trust
mstrust.org.uk/information-support/home-and-travel/driving-and-public-transport
Driving with MS - News item from MS Trust what you need to know mstrust.org.uk/news/driving-ms-what-you-need-know
How the Motability Scheme works - motability.co.uk/how-it-works/
Send us a message about the podcast. For questions about MS please contact our helpline 0800 032 38 39
What should you eat when you live with MS? We come across this question a lot from the MS community. It’s not surprising considering how much conflicting information there is out there.
That’s why we’re demystifying MS diets in our two-part podcast special. Episode one saw us catch up with Dr. Terry Wahls and Samantha Josephs (Overcoming MS) about their respective diets and lifestyle approaches.
This time around, we’re chewing the fat with registered dietician Claire Fenlon (Chilterns Neuro Centre), who also lives with MS herself. She helps us to understand the importance of healthy eating with MS and outlines some helpful tips.
Also, MS Trust Head of Information and Engagement, Dr Claire Winchester, gives us food for thought on the research behind nutrition and diet.
Join us for all the latest tips, information and more!
Episode notes
Demystifying MS diets pt 1: the Wahls Protocol and Overcoming MS: mstrust.org.uk/information-support/podcasts/demystifying-ms-diets-pt-1-wahls-protocol-and-overcoming-ms
Diet and MS - info from MS Trust mstrust.org.uk/information-support/diet-ms
Types of MS Diets – info from MS Trust mstrust.org.uk/information-support/diet-ms/types-diet
Diet and symptoms – info from MS Trust mstrust.org.uk/information-support/diet-ms/diet-and-symptoms
Donate to the MS Trust donate.mstrust.org.uk/
Tips to keep your bladder healthy mstrust.org.uk/news/expert/tips-keeping-your-bladder-healthy
Tips to keep your bowel healthy mstrust.org.uk/news/expert/tips-keeping-your-bowel-healthy
Chilterns Neuro centre chilternsneurocentre.org
Send us a message about the podcast. For questions about MS please contact our helpline 0800 032 38 39
Have you thought about making changes to your diet to help manage your MS? Maybe you’ve experimented with a few fad diets, but never quite found what works.
Well, we know the feeling. The world of nutrition can be tricky – you’re not sure if you should be keto, vegan, paleo, carnivore or just straight up confuddled.
Throw MS into the mix and all of a sudden, things can get even more confusing. That’s why we’re sinking our teeth into the world of MS and diet and digesting the facts in a two-part podcast series.
First up, we tuck in to two of the most popular MS diets: The Wahls Protocol and the Overcoming MS diet and lifestyle.
Our guests, Dr. Terry Wahls (The Wahls Protocol) and Samantha Josephs (Overcoming MS), discuss their diets, the research behind them and how healthy eating patterns can support your overall health.
Listen now for all the latest tips, information and more!
Episode notes
Diet and MS - info from MS Trust mstrust.org.uk/information-support/diet-ms
Types of MS Diets – info from MS Trust mstrust.org.uk/information-support/diet-ms/types-diet
Diet and symptoms – info from MS Trust mstrust.org.uk/information-support/diet-ms/diet-and-symptoms
The Wahls protocol terrywahls.com/the-wahls-protocol/
Overcoming MS Diet overcomingms.org/program/guide-overcoming-ms-diet/
Send us a message about the podcast. For questions about MS please contact our helpline 0800 032 38 39
JLS founding member and critically acclaimed solo artist Oritsé Williams has been in the limelight since 2008. But long before the dazzling, bright lights of fame, Oritsé began his journey as a young carer for his mum, who was diagnosed with MS when he was 12 years old.
Find out about the challenges that he and his siblings faced, his mother’s MS journey and why he’s passionate about supporting other young carers out there.
Listen now to hear his take on caring for someone with dignity and love, the family bond they developed and how finding a creative outlet supported him emotionally.
Episode notes
Information for carers - information from the MS Trust - mstrust.org.uk/information-support/care-and-carers/information-for-carers
Caring for someone with MS - Podcast from MS Trust - mstrust.org.uk/information-support/podcasts/caring-someone-ms
Advance care planning - information from the MS Trust - mstrust.org.uk/a-z/advance-care-planning
The MS Trust announce Oritsé Williams as its new celebrity ambassador -mstrust.org.uk/news/ms-trust-announce-oritse-williams-its-new-celebrity-ambassador
Caring organisations for young carers
https://www.mytimeyoungcarers.org/ - MYTIME Young Carers
https://www.childrenssociety.org.uk/what-we-do/our-work/supporting-young-carers/ - Children's society
https://carers.org/about-caring/about-young-adult-carers - Carers UK
Waiting for a potential multiple sclerosis diagnosis can be daunting. In this episode, we explore the "limbo land" time during your first appointments and a possible MS diagnosis.
Neurologist, Dr Emma Tallantyre, joins us to talk about the importance of reaching out to your healthcare professionals, managing stress and more!
We discuss the roles of neurologists and the tests you might go through. Plus, we cover some top tips for preparing for each appointment and what to do next.
Listeners will gain a deeper understanding of the diagnostic journey, treatments, and the value of support from healthcare professionals, family, and friends.
Listen now for expert advice, personal stories, and community support.
Show notes
- Worried you have MS?: mstrust.org.uk//information-support/ms-symptoms-diagnosis/worried-you-have-ms
- MS Trust what is MS?: mstrust.org.uk/about-ms/what-ms
- MS trust how is MS diagnosed?: mstrust.org.uk/about-ms/what-ms/how-ms-diagnosed
- MS Trust newly diagnosed: mstrust.org.uk/about-ms/newly-diagnosed
- MS Trust A-Z of MS : mstrust.org.uk/a-z
- MS Trust questions to ask a health professionals: mstrust.org.uk/a-z/questions-ask-health-professionals
- MS Trust contact us: mstrust.org.uk/what-we-do/contact-us
- Diagnosing MS - Lumbar puncture video: youtube.com/watch?v=dGmZt6XmZAQ
- Diagnosing MS - Evoked potentials tests video: youtube.com/watch?v=DttdmivruP4
- Diagnosing MS - MRI scan video youtube.com/watch?v=Erz_nGg4iII
Do you have feel embarrassed about your MS symptoms? Do you find some topics difficult to talk about?
You’re not the only one. 85% of people we surveyed felt embarrassed by at least one of their symptoms and many of the community were hiding their symptoms from their partners.
A third of people living with MS also avoided seeking medical help due to embarrassment. It’s time to shatter the stigma.
MS Trust ambassadors, Trishna Bharadia, Dr Agne Straukiene and Richard Sprenger tackle taboo subjects like sexual dysfunction, bladder and bowel issues, drugs and opening up to your employer.
Listen now for honest experiences, tips and more.
Show Notes
MS Awareness Week 2024
mstrust.org.uk/get-involved/ms-awareness-week
Working life and MS
mstrust.org.uk/information-support/work-money-legal/working-life
Equality act
mstrust.org.uk/a-z/equality-act
Sexual problems for men with MS
mstrust.org.uk/a-z/sexual-problems-men-ms
Sexual problems for women with MS
mstrust.org.uk/a-z/sexual-problems-women-ms
Bladder and Bowel problems
mstrust.org.uk/a-z/bladder-and-bowel-problems
Podcasts
How can I manage my MS bowel problems?
mstrust.org.uk/information-support/podcasts/how-can-i-manage-my-ms-bowel-problems
How can I manage my MS bladder problems?
mstrust.org.uk/information-support/podcasts/how-can-i-manage-my-ms-bladder-problems
Talking toilet troubles in MS
mstrust.org.uk/information-support/podcasts/talking-toilet-troubles-ms
Cognition and thinking problems in MS
mstrust.org.uk/information-support/podcasts/cognition-and-thinking-problems-ms
Sex and MS part 1 (women)
mstrust.org.uk/information-support/podcasts/sex-and-ms-part-1-women
Sex and MS part 2 (men)
mstrust.org.uk/information-support/podcasts/sex-and-ms-part-2-men
Relationships and MS
mstrust.org.uk/information-support/podcasts/relationships-and-ms
Working life and MS
mstrust.org.uk/information-support/podcasts/working-life-and-ms
Have you ever wondered how your hormones might affect your MS?
We're joined by podcast guests Olivia Mason, a woman diagnosed with multiple sclerosis not long after giving birth, and Professor Ruth Dobson, a consultant neurologist specialising in MS.
Together, we explore how periods, pregnancy, breastfeeding, and menopause can influence MS.
Here's what we cover
• Can periods make MS symptoms worse?
• Is pregnancy protective for women with MS?
• Can you use disease modifying drugs (DMDs) whilst pregnant?
• Can women with MS safely breastfeed?
• How does menopause affect MS symptoms?
• Plus, Olivia shares her personal experience and insights on navigating an MS diagnosis as a new mother.
This episode is a must-listen for anyone who wants to understand more about how periods, pregnancy, breastfeeding and the menopause can affect multiple sclerosis.
Listen now for all of the latest information, tips and more!
Episode notes- MS Trust A-Z on MS and Hormones: mstrust.org.uk/a-z/hormones
- MS Trust A-Z on MS and pregnancy: mstrust.org.uk/search/pregnancy
- MS Trust A-Z on MS and breastfeeding: mstrust.org.uk/a-z/breastfeeding- MS Trust A-Z on MS and menopause: mstrust.org.uk/search/menopause
- MS Trust Podcast on MS and menopause: mstrust.org.uk/information-support/podcasts/how-does-menopause-affect-ms
- Can the menopause affect MS - Research update: mstrust.org.uk/research/research-updates/update151013-menopause-MS
-UK guidelines for treating multiple sclerosis symptoms during pregnancy - Research Update: mstrust.org.uk/news/research/230515-uk-guidelines-treating-multiple-sclerosis-symptoms-during-pregnancy
- Why I created The Twelve Day Marathon - Blog by Olivia on MS Trust website: mstrust.org.uk/news/stories/why-i-created-twelve-day-marathon
- UK MS pregnancy Register: ukmsregister.org/pregnancy
Bowel problems and MS. The underdiscussed topic that can leave many feeling anxious about leaving home. Have you experienced constipation or incontinence and wondered what part multiple sclerosis plays in them?
Our podcast guests, Noreen Barker (MS Nurse Consultant) and Concetta Brugaletta (Clinical Nurse Specialist), are on a mission to shatter the stigma around bowel issues and MS. We talk treatments, strategies, tips and more!
Join us as we discuss the loo taboo. Plus, find out what options are available for people living with MS bowel issues.
Listen now.
Show notes
Bowel problems in MS - information from MS Trust - mstrust.org.uk/a-z/bowel-problems
Manging your Bowel - Free book from MS Trust
shop.mstrust.org.uk/publications/managing-your-bowels
Ask the expert bladder and bowel problems in MS - information from the MS Trust mstrust.org.uk/news/expert/ask-expert-bowel-and-bladder-problems-ms
Finding a toilet when out and about - article from MS Trust - mstrust.org.uk/news/expert/finding-toilet-when-out-and-about
Are MS bladder problems bursting the seams of your day-to-day life? You’re not alone. Around 75% of people living with MS experience bladder issues and we know how frustrating and isolating they can be.
That’s why we’re talking to MS specialist nurse, Grace Hazlett, about treatment options, preventative strategies and practical advice. She gives us the low down on pelvic floor exercises, fluid retention, catheters and more!
Whether you’re constantly fighting the urge to go, or looking for ways to prevent future bladder problems, this might just be the podcast for you.
Listen now to find out tips, tricks, and practical advice to support MS bladder issues.
Show notes
Bladder problems in MS - information from MS Trust - mstrust.org.uk/a-z/bladder-problems Manging your Bladder - Free book from MS Trust
shop.mstrust.org.uk/publications/managing-your-bladder/
Ask the expert bladder and bowel problems in MS - information from the MS Trust mstrust.org.uk/news/expert/ask-expert-bowel-and-bladder-problems-ms
What can you do about bladder problems in MS - MS Trust video with Angie Rantell, Consultant Nurse in Urogynaecology youtu.be/qXitm--wAnw
Living with MS means you might hit some unexpected mental health turbulence at times. Throw in the cost of living crisis, shocking world events and the gloomy news cycle and things around you can easily start to feel pressurised.
Well, we may not have the answers to all of the world’s problems, but what we do have is a rather brilliant podcast guest: Professor Derek Willis. He tells us how being kind to yourself can unlock new perspectives in life. Plus, he outlines some practical strategies for managing the expectations of others and taking healthy breaks.
Listen now for tips, tricks and more! And … breathe.
Episode notes
MS and mindfulness with Justin Standfield - video on YouTube
Mindfulness and MS - Information from MS Trust
Wellbeing and MS - Information from MS Trust
Can mindfulness really help my MS? - podcast from MS Trust
MS: your emotions and feelings - podcast from MS Trust
Ok, you’ve heard all about mindfulness and maybe you’re even considering giving it a go. But can it actually help you manage life with MS? Is it just one of those trendy well-being fads like eating charcoal or moss smoothies (yep, they’re both actually real)?
Mindfulness teacher, Justin Standfield, lives with MS and he joins us to dispel a couple of mindful myths. Plus, he shares some practical ways that he manages his own MS symptoms using mindfulness.
Join us to learn tips, tricks and approaches to mindful matters and MS.
Episode Notes
MS and mindfulness with Justin Standfield - video on YouTube
Mindfulness and MS - Information from MS Trust
Wellbeing and MS - Information from MS Trust
How to meditate for beginners - information from the NHS
comeonbabylightmyfire.com - Justin's Blog
Justin on X
A selection mindfulness apps (not reviewed or endorsed by the MS Trust)
Headspace
Calm
Insight Timer
Simple Habit
Buddhify
What have the MS community been asking about this year? We interview Corinne from our helpline team who tackles the burning MS questions and trends that our service has encountered in 2023.
In our busiest helpline year yet, the range of questions has been vast! We cover symptoms, equipment and a whole lot more.
Plus, Dr Claire Winchester joins us for a fun experiment! We put forward your questions to an AI chatbot to see if it could be a useful source of MS information. Dive in to see if it has same level of expertise as our helpline service.
Listen now for tips, helpful information and more.
Episode Notes
- MS Trust Helpline
- Supporting the MS Trust - information from the MS Trust
- MS Trust Facebook Group
- mstrust.org.uk/a-z/fatigue - MS Trust information about fatigue
- mstrust.org.uk/a-z/pain - MS Trust information about pain
- mstrust.org.uk/information-support/newly-diagnosed - MS Trust information for the newly diagnosed
- mstrust.org.uk/information-support/work-money-legal/working-life - MS Trust information about work and MS
- mstrust.org.uk/information-support/home-and-travel/equipment - MS Trust information about equipment
- mstrust.org.uk/a-z/altered-sensations - MS Trust information about altered sensations
- mstrust.org.uk/a-z/magnetic-resonance-imaging-mri - MS Trust information about MRI's
- mstrust.org.uk/news/focus-fact-or-fiction - MS Trust new item about on to work out if an information source is reliable or not
- multiplesclerosisnewstoday.com/news-posts/2023/11/27/ news item from Multiple Sclerosis news about AI's helping out reading MRI scans.
If you’re not sure how to best prepare for your next MS Nurse appointment, this could be the podcast for you.
No matter where you are on your MS journey, talking about your condition can bring on a wave of emotions. Your mind is likely to be brimming with questions and points to raise.
Add in long NHS waiting lists and squeezed appointment times, and it might feel as though you’re facing a steep challenge.
When your appointment does come around, how can you make the most of your time with an MS Nurse and avoid information overload?
Our podcast guest, MS Trust Lead Nurse Specialist, Dr Lou Jarrett explores some helpful tips on how to best prepare for your appointment.
Learn how to build long-lasting relationships with your MS Nurse, what questions to ask and what to do whilst you’re waiting to be seen.
Finally, we'll touch on why the MS Trust is on a mission to train MS Nurses in the UK.
Episode notes
- Making the most of your appointments - information from the MS Trust
- Questions to ask health professional- information from the MS Trust
- MS Trust Helpline
- The Big Give - fundraising campaign from MS Trust
- Supporting the MS Trust - information from the MS Trust
- How we train and support your MS health professionals
- Patient initiated follow-up (PIFU) - information from NHS
- MS Trust Facebook Group
Feeling overwhelmed and anxious at the thought of discussing your MS with a neurologist? Wondering what questions to ask and what you should bring? You’re not alone. Whether you’re preparing for your first appointment or your tenth, emotions can be heightened.
Add in the limited time that you get to talk to them and lengthy NHS waiting lists, and it can make you feel as though you’re fighting an uphill battle.
We caught up with MS Trust Ambassador, Dr Agne Straukiene, to set out some strategies for making the most of your neurology appointments. Find out how to bring up sensitive topics, what you can do when you’re waiting to be seen and who you should bring with you.
Listen now to hear our helpful tips and get yourself prepared for your next neurologist appointment.
Show notes:
Making the most of your appointments - info from the MS Trust mstrust.org.uk/information-support/newly-diagnosed/making-most-appointments
Questions to ask health professionals - info from the MS Trust mstrust.org.uk/a-z/questions-ask-health-professionals
MS Trust Helpline: mstrust.org.uk/what-we-do/about-us/ms-helpline-and-information
Bee Well With MS Podcast with Dr Agne Straukiene beewellwithms.com
Ever wondered if smoking affects your MS? Sure, we all know the health risks linked to smoking. But, does smoking cause multiple sclerosis progression? And will your MS symptoms improve if you quit smoking?
We dive deep into these questions with consultant neurologist, Professor Richard Nicholas. Plus, Caroline Smith, who lives with MS, talks us through the steps she took to quit smoking.
Listen now!
Show Notes
Smoking and MS - info from the MS Trust: mstrust.org.uk/a-z/smoking
Quitting smoking slows down MS progression - info from MS Trust: mstrust.org.uk/news/research/230411-quitting-smoking-slows-down-ms-progression
Five top tips for improving your lung health – blog from Jodi Barber - -mstrust.org.uk/news/expert/five-top-tips-improving-your-lung-health
Stoptober - Stop smoking campaign from NHS www.nhs.uk/better-health/quit-smoking
The MS Register: ukmsregister.org
Set up a fundraising challenge: mstrust.org.uk/get-involved/fundraising-and-events/do-it-your-way
Multiple sclerosis can affect breathing in advanced MS. But breathing problems can begin at any stage with MS. To explain more in this podcast we talk to Racheal Moses who is a Consultant Respiratory Physiotherapist and Neuro Physiotherapist Jody Barber. They explain how you can spot breathing problems early, what you can do if you have breathing difficulties and what you can do to try to prevent them occurring in the future.
Show Notes
Breathing problems - info from the MS Trust: mstrust.org.uk/a-z/breathing-problems
Breathing exercises - info from MS Trust: /mstrust.org.uk/information-support/exercise-ms/build-your-own-exercise-routine/breathing-exercises
Five top tips for improving your lung health – blog from Jodi Barber - -mstrust.org.uk/news/expert/five-top-tips-improving-your-lung-health
Speech and language therapy – info from MS Trust - mstrust.org.uk/a-z/speech-and-language-therapy
Mindfulness and MS – article Jody mentions - mstrust.org.uk/news/views-and-comments/mindfulness-and-ms
This is a recording from a live stream we did earlier with the head of information and engagement at the MS Trust Claire Winchester, we chat to her about a report called “Life changing: mental health and MS". In this report we find out about what the MS community in the UK has to say about mental with and Multiple Sclerosis.
Episode notes
Read the full report, Life changing: mental health and MS: https://shop.mstrust.org.uk/publications/life-changing-mental-health-and-ms/
Depression and MS - info from the MS Trust: https://mstrust.org.uk/a-z/depression Anxiety and MS - info from the MS Trust: https://mstrust.org.uk/a-z/anxiety
Life changing: mental health and MS - news from MS Trust https://mstrust.org.uk/news/life-changing-mental-health-and-ms
Ask the expert: Mental health and MS - info from MS Trust https://mstrust.org.uk/news/expert/ask-expert-mental-health-and-ms
Five top tips to help health professionals look after their mental health - blog from MS Trust https://mstrust.org.uk/news/views-and-comments/five-top-tips-help-health-professionals-look-after-their-mental-health
It's all in your head: Mental health and MS - podcast from MS Trust https://mstrust.org.uk/information-support/podcasts/mental-health-and-ms
MS: your emotions and feelings - live podcast from MS Trusthttps://mstrust.org.uk/information-support/podcasts/ms-your-emotions-and-feelings-live
Getting to grips with using a mobility aid - podcast from MS Trust
https://mstrust.org.uk/information-support/podcasts/getting-grips-using-mobility-aid
MS and your feelings- publication from the MS Trust https://shop.mstrust.org.uk/publications/ms-and-your-feelings/
This is a recording from a live stream we did earlier with the head of information and engagement at the MS Trust Claire Winchester, we chat to her about a report called “Life changing: mental health and MS". In this report we find out about what the MS community in the UK has to say about mental with and Multiple Sclerosis.
Episode notes
Read the full report, Life changing: mental health and MS: https://shop.mstrust.org.uk/publications/life-changing-mental-health-and-ms/
Depression and MS - info from the MS Trust: https://mstrust.org.uk/a-z/depression Anxiety and MS - info from the MS Trust: https://mstrust.org.uk/a-z/anxiety
Life changing: mental health and MS - news from MS Trust https://mstrust.org.uk/news/life-changing-mental-health-and-ms
Ask the expert: Mental health and MS - info from MS Trust https://mstrust.org.uk/news/expert/ask-expert-mental-health-and-ms
Five top tips to help health professionals look after their mental health - blog from MS Trust https://mstrust.org.uk/news/views-and-comments/five-top-tips-help-health-professionals-look-after-their-mental-health
It's all in your head: Mental health and MS - podcast from MS Trust https://mstrust.org.uk/information-support/podcasts/mental-health-and-ms
MS: your emotions and feelings - live podcast from MS Trusthttps://mstrust.org.uk/information-support/podcasts/ms-your-emotions-and-feelings-live
Getting to grips with using a mobility aid - podcast from MS Trust
https://mstrust.org.uk/information-support/podcasts/getting-grips-using-mobility-aid
MS and your feelings- publication from the MS Trust https://shop.mstrust.org.uk/publications/ms-and-your-feelings/
Sleep problems are more common in people with MS than the general population. Around half of people with MS say they experience disturbed sleep. In this episode we talk about some common problems and some potential ways to improve your sleep. We chat to prof Michael Banissy who has written several books on the topic and we also caught up with tiktok star Jo, also known as the Yorkshire wife, to talk to her about her issues with sleep.
Show Notes
Sleep and MS - information from The MS Trust: https://mstrust.org.uk/information-support/wellbeing-ms/sleep
Focus on sleep problems - information from the MS Trust: https://mstrust.org.uk/news/expert/focus-sleep-problems-ms
Sleep and MS podcast - podcast from MS Trust: https://mstrust.org.uk/information-support/podcasts/sleep-problems-ms
The Yorkshire Wife On tikTok - https://www.tiktok.com/@theyorkshirewife
Diagnosing MS can be a lengthy procedure, and getting on a treatment path can take even longer. So what happens when you treat potential MS really early? In this episode, we talk to Professor Klaus Schmierer about the AttackMS trial. The trial, the first of its kind, aims to use a highly-effective drug to treat people within 14 days of presenting with possible MS symptoms.
Show Notes
AttackMS trial: - classic.clinicaltrials.gov/ct2/show/NCT05418010
How is MS Diagnosed - information from The MS Trust: mstrust.org.uk/information-support/ms-symptoms-diagnosis/how-is-ms-diagnosed
CIS - information from The MS Trust: mstrust.org.uk/a-z/clinically-isolated-syndrome-cis
Taking part in clinical trials - information from The MS Trust: mstrust.org.uk/information-support/ms-research/which-trials-and-where
The MS Guide video interview with other AttackMS participants https://www.youtube.com/watch?v=0j-t2qUhhO0
AttackMS: assessing the feasibility of multiple sclerosis treatment within 14 days of presentation - YouTube
To get in touch with AttackMS
Email: bartshealth.attackms@nhs.net
Twitter: @AttackMS_trial
Internet: https://multiple-sclerosis-research.org/2023/02/attack-attack-attack-underway/
Have you been told to consider using a stick or wheelchair, but don't think you're ready for it yet? Maybe you're noticing changes to your walking ability and you’re wondering what you can do about it? In this episode, we talk to neuro physio Laura about helpful mobility aids, and how to change your perspective on using them. We also check in with Hayley (my_sassability), who was diagnosed with MS aged just 13. She now uses mobility aids and is passionately advocating the importance of being seen not just using her wheelchair, but being proud to use her wheelchair.
Show notes
Hayley Blog on MS Trust website: mstrust.org.uk/news/stories/my-sassability-if-we-are-not-seen-we-are-not-heard
A-Z of MS Walking difficulties: mstrust.org.uk/a-z/walking-difficulties
Mobility problems and aids in MS (Part 1) podcast from MS Trust: mstrust.org.uk/information-support/podcasts/mobility-problems-and-aids-ms-part-1
Mobility problems and aids in MS (Part 2) podcast from MS Trust:
mstrust.org.uk/information-support/podcasts/mobility-problems-and-aids-ms-part-2
Neuroheroes: www.neuroheroes.co.uk
So you want to lead a healthier lifestyle with MS? But, you're feeling overwhelmed and you're not sure where to start? We've been there. Can simple changes in sleep, exercise, and diet REALLY influence MS management?
Special guest Charlie Peel, author of ‘Disease-modifying lifestyle in multiple sclerosis: evidence, challenges, and the importance of engaged, informed patients,’ gives us her take on the small steps that can make a massive difference to you. Learn practical strategies for positive lifestyle changes today!
Plus listen to our colleague Stephen’s MS journey. You’ll hear about how the exercise challenge ‘Miles for MS’ changed his life, why he’s now organising it and how you can get involved! Oh, and the best part? This challenge is truly accessible to everyone in the MS community!
Listen now to discover the power of setting goals, staying active and living well with MS.
Show notes
Miles for MS - Find out how you can get involvedhttps://mstrust.org.uk/event/miles-ms Exercise and MS - Information from the MS Trust:mstrust.org.uk/information-support/exercise-ms Diet and MS - Information from the MS Trust:mstrust.org.uk/information-support/diet-ms Lifestyle Choices - Information from the MS Trust:mstrust.org.uk/information-support/wellbeing-ms/lifestyle-choices Sleep and MS - Information from the MS Trust:mstrust.org.uk/information-support/wellbeing-ms/sleep Exercise is good for your brain - research update from the MS Trust:mstrust.org.uk/research/research-updates/210203-exercise-good-brain BeeWellWithMS Podcast with Dr Agne Straukiene - https://www.spreaker.com/user/12181923
Ready to take steps to improve your brain health? Neurologist Agne Straukiene (also host of BeeWellWithMS podcast) has a multi-pronged, scientific approach to boost your mental health, symptom management, fatigue resilience, cognition and sleep quality.
We talk tailored exercise, learning how diet helps and hinders your MS, and the lowdown on supplements. Plus, how sleep, meditation, and stretching your mind with a new hobby or skill play their part too.
Show Notes
Episode notes:
-Brain health and MS - Information from the MS Trust: mstrust.org.uk/a-z/brain-health
-Exercise and MS - Information from the MS Trust: mstrust.org.uk/information-support/exercise-ms
- Diet and MS - Information from the MS Trust: mstrust.org.uk/information-support/diet-ms
- Lifestyle Choices - Information from the MS Trust: mstrust.org.uk/information-support/wellbeing-ms/lifestyle-choices
- Sleep and MS - Information from the MS Trust mstrust.org.uk/information-support/wellbeing-ms/sleep
-Staying Smart - tool from the MS Trust: mstrust.org.uk/information-support/staying-smart
-Brain health - article from the MS Trust: mstrust.org.uk/a-z/brain-health
-Exercise is good for your brain - research update from the MS Trust: mstrust.org.uk/research/research-updates/210203-exercise-good-brain
- Bee Well with MS podcast -podcast from Dr Agne Straukiene
During MS Awareness week we aired a live podcast were we talked all things MS, emotions and feelings. Our recent survey of over 2,000 people living with MS, revealed that 56% feel that MS negatively impacts their mental health.
We were super excited to be joined by two excellent guests, who answered questions from the viewers:
- Roshan das Nair
• Senior Research Scientist, SINTEF, Norway
• Professor of Clinical Psychology & Neuropsychology, University of Nottingham, UK
- Dr Cora Sargeant, Educational Psychologist and presenter of Sciencing the s**t out of MS.
Show notes
-MS and your feelings, especially for people who are new to MS shop.mstrust.org.uk/publications/ms-and-your-feelings/
- This hub on our website connects you to all kinds of options to support your emotional wellbeing. mstrust.org.uk/information-support/wellbeing-ms
- Mood matters film: youtube.com/watch?v=euZvutKFimU
- MS Trust Mental health podcast series - It's all in your head
Every week around 130 people are diagnosed with MS. Finding information you can trust is important, particularly when you're newly diagnosed, as learning about MS can help you take control and feel more secure in a time of uncertainty. In this episode, we chat with Corinne from our helpline about what questions they hear from people who have recently been diagnosed and the types of responses they give to them.
We also talk to Team GB athlete Lina Nielsen, who was diagnosed as a teenager about her MS diagnosis and her approaches to handling the condition.
Episode notes
- Newly diagnosed?: mstrust.org.uk/information-support/newly-diagnosed
- MS Trust what is MS?: mstrust.org.uk/about-ms/what-ms
- MS trust how is MS diagnosed?: mstrust.org.uk/about-ms/what-ms/how-ms-diagnosed
- MS Trust A-Z of MS : mstrust.org.uk/a-z
- MS Trust contact us: mstrust.org.uk/what-we-do/contact-us
- Lina Nielson's Instagram: instagram.com/linaruns
Our MS Trust Enquiry Service helpline is available from Monday to Friday (except UK bank holidays) from 9am to 5pm. Outside these hours you can leave us a message and we'll get back to you as soon as we can. Call our Enquiry Service on 0800 032 38 39 or you can email us ask@mstrust.org.uk. It’s available to anyone who wants to know more about MS, not just those currently living with the condition.
In this episode, we are doing an MS awareness week special. This year the campaign looked at how MS affects everybody differently and encouraged people to share their experiences using the hashtag #MSMakesMe. Helena and Erika, from our fundraising team, catch up on what has happened throughout the week, as well as some exciting things that are happening in the next few months for the MS Trust.
Want to join the conversation? Listen now to find out how you can get involved and make your voice heard.
Episode notes
- MS Awareness week: mstrust.org.uk/MSAW
- Live stream - MS: Your emotions and feelings: mstrust.org.uk/get-involved/ms-awareness-week#register
- MS and mindfulness with Justin Standfield - YouTube
- How does MS Make you feel?: mstrust.org.uk/news/how-does-ms-make-you-feel
- Miles for MS: mstrust.org.uk/event/miles-ms
- Host a Thirtea party: mstrust.org.uk/party
- Volenteer with the MS Trust - mstrust.org.uk/get-involved/volunteering
- MS Trust contact us: mstrust.org.uk/what-we-do/contact-us
Our MS Trust Enquiry Service helpline is available from Monday to Friday (except UK bank holidays) from 9am to 5pm. Outside these hours you can leave us a message and we'll get back to you as soon as we can. Call our Enquiry Service on 0800 032 38 39 or you can email us ask@mstrust.org.uk. It’s available to anyone who wants to know more about MS, not just those currently living with the condition.
To contact our fundraising team email fundraising@mstrust.org.uk or call the fundraising team on 01462 476707.
It’s estimated that 130,000 people in the UK have multiple sclerosis. Every week around 130 more people are diagnosed. Are you worried that your symptoms might be MS? Have you looked MS up on the internet and read about symptoms that sound like the ones you’re experiencing? Or perhaps someone in your family may have MS and you are concerned that you may also get it.
In this podcast, we chat about what you should do if you are worried that you might have MS, as well as what your next steps could be. Although don’t turn off if you already have a diagnosis, as we’re also sharing an interesting personal story from Dr Daniel Matterson, better known as @the.ms.doctor on Instagram. He chats to us about his diagnosis and shares some tips about what you can do if you are worried you have MS.
Episode notes
- Worried you have MS?: mstrust.org.uk//information-support/ms-symptoms-diagnosis/worried-you-have-ms
- MS Trust what is MS?: mstrust.org.uk/about-ms/what-ms
- MS trust how is MS diagnosed?: mstrust.org.uk/about-ms/what-ms/how-ms-diagnosed
- MS Trust newly diagnosed: mstrust.org.uk/about-ms/newly-diagnosed
- MS Trust A-Z of MS : mstrust.org.uk/a-z
- MS Trust contact us: mstrust.org.uk/what-we-do/contact-us
- MS Awareness week webinars: mstrust.org.uk/MSAW
- Diagnosing MS - Lumbar puncture video: youtube.com/watch?v=dGmZt6XmZAQ
- Diagnosing MS - Evoked potentials tests video: youtube.com/watch?v=DttdmivruP4
- Diagnosing MS - MRI scan video youtube.com/watch?v=Erz_nGg4iII
- Dr. Daniel Matterson Instagram: instagram.com/the.ms.doctor
Our MS Trust Enquiry Service helpline is available from Monday to Friday (except UK bank holidays) from 9am to 5pm. Outside these hours you can leave us a message and we'll get back to you as soon as we can. Call our Enquiry Service on 0800 032 38 39 or you can email us ask@mstrust.org.uk. It’s available to anyone who wants to know more about MS, not just those currently living with the condition.
How can I explain MS fatigue to my family? What treatments are available for MS fatigue? What can I do to help my fatigue? We answer these questions and many more submitted by you in a special MS fatigue livestream with Claire from our information team.
Listen now to our sister podcast: 'Multiple Sclerosis breaking it down live!'
Want to get involved in the next livestream? Join our MS streaming community mstrust.org.uk/get-involved/fundraising-and-events/ms-trust-exclusives/msplay
Episode notes:
- MS Trust information on fatigue: mstrust.org.uk/a-z/fatigue
- Book - Living with fatigue: shop.mstrust.org.uk/publications/living-with-fatigue/
- Video on how Fatigue makes me feel: https://www.youtube.com/watch?v=2DnjDH2v8XY&t=3s
-Describing fatigue to others: mstrust.org.uk/news/expert/describing-fatigue-others
-Can cacao really help with MS fatigue? mstrust.org.uk/news/stories/can-cacao-really-help-ms-fatigue
-Fatigue and MS webinar - mstrust.org.uk/news/stories/can-cacao-really-help-ms-fatigue
-Ask the expert: Coping with MS fatigue: mstrust.org.uk/news/expert/ask-expert-coping-ms-fatigue
-MS Trust Podcast - How can I manage living with MS fatigue?: mstrust.org.uk/information-support/podcasts/how-can-i-manage-living-ms-fatigue
-More on Stream for MS
mstrust.org.uk/get-involved/fundraising-and-events/ms-trust-exclusives/msplay
Medications discussed
-Modafinil (Provigil): mstrust.org.uk/a-z/modafinil-provigil
-Modafinil: now restricted to narcolepsy
www.gov.uk/drug-safety-update/modafinil-provigil-now-restricted-to-narcolepsy
-Amantadine (Symmetrel): mstrust.org.uk/a-z/amantadine-symmetrel-lysovir
-Do medicines reduce fatigue in MS?: mstrust.org.uk/news/research/210308-medicines-improve-fatigue
Frustrated how multiple sclerosis is typecast in the media? We often hear that TV shows, newspapers and social media do not show the kind of MS most of you experience. So we asked three journalists with MS for their standpoint. Listen to our chat with Rachel Horne, Daf Wyn and Richard Sprenger - as we shine the spotlight on MS in the media, and why we think a more realistic approach is long overdue.
Episode notes:
- MS Trust News and stories: mstrust.org.uk/news-stories
- Share your story with the MS Trust: mstrust.org.uk/news-and-stories/send-us-your-story
- MS Trust Blog, What made Daf Wyn call his doctor?: mstrust.org.uk/news/stories/what-made-daf-wyn-call-his-doctor
- MS Trust Blog, A sceptic's guide to wellness: mstrust.org.uk/news/stories/sceptics-guide-wellness
- Guardian series; A sceptic's guide to wellness: theguardian.com/lifeandstyle/series/a-sceptic-s-guide-to-wellness
- Rachel Horne Prize for Women's Research in MS: Rachelhorneprize.com
News & stories
Stay in the know with the latest news, research and stories from the MS community. Find the information that matters to you, all in one place.
mstrust.org.uk
In this episode, we talk about altered sensations. So what are altered sensations then? They are a bunch of sensory symptoms that can occur in MS, such as burning, tingling, pins and needles, crawling, numbness, prickling and the list goes on!
We talk to Dr Amanda Howarth, a pain specialist about what exactly they are and why they happen. We also share some of the MS community's life hacks around living with altered sensations.
Episode notes:- MS Trust A-Z page on altered sensations: mstrust.org.uk/altered-sensations - MS Trust A-Z page on pain: mstrust.org.uk/pain
- MS Trust Blog - What's with the strange tingling, crawling, burning and prickling feelings?: mstrust.org.uk/news/expert/whats-strange-tingling-crawling-burning-and-prickling-feelings
- MS Trust A-Z on Complementary and alternative medicine: mstrust.org.uk/complementary-and-alternative-medicine
- MS Trust A-Z on Cannabis: mstrust.org.uk/cannabis
- MS Trust A-Z on Sativex:mstrust.org.uk/sativex
- MS Trust A-Z on Gabapentin: mstrust.org.uk/gabapentin
New year, new podcast! In this episode, we cover new research developments, education and what’s new at the MS Trust.
We kick off the year by talking a little about what’s happening in the world of MS, the MS Trust and more.
We chat to Rachel Horne who is a journalist with MS. She breaks down her MS journey and how she launched ‘the Rachel Horne Prize for Women's Research in MS’.
Next, our guest Helen from our MS Trust education team discusses the training we do with MS nurses and what this means for people living with MS
Episode notes:
- The MS Trust podcast: mstrust.org.uk/information-support/support-services/podcasts-ms-trust
- More about MS Specialist Nurses: mstrust.org.uk/a-z/ms-specialist-nurses
- Rachel Horne Prize for Women's Research in MS: Rachelhorneprize.com
- MS Trust Disease modifying drugs books; shop.mstrust.org.uk/publications/?type=treatments
Next episode
The next episode will be on altered sensations and MS. We’re finding out about those weird, odd, creeping, crawling, fizzing and sometimes painful feelings that you might experience.
We would love to hear from you if you have any comments or questions on the subject. We would REALLY love to know any life hacks you have for dealing with altered sensations. Send in your tips or questions (they can remain totally anonymous) on a voice note or message via WhatsApp on 07458303326. Alternatively, you can email comms@mstrust.org.uk.
For our last podcast of the year, we thought we'd get back to basics and concentrate on one of the most important things the MS Trust does, and that is answering your questions about MS.
We've compiled a list of the most popular topics which people have contacted us about this year. We chat with our Head of Information and Engagement, Claire who works on the MS Trust helpline, to talk us through some of these topics.
**Episode notes:
- What we do; mstrust.org.uk/what-we-do/about-ms-trust - MS helpline and information;*mstrust.org.uk/what-we-do/about-us/ms-helpline-and-information* - MS Trust Facebook group facebook.com/groups/multiplesclerosistrust**Whether you have recently been diagnosed, want to know more about a symptom you are experiencing, or need information on the different MS drugs and treatments, our MS Trust helpline team are here to answer your questions.
In this short episode, Helena talks to Tristan about an exciting fundraising opportunity to double your gifts to the MS Trust at no additional cost. Help your money go further and double the impact for people with MS.
Episode notes:
- Double your donation at mstrust.org.uk/big-give - From 29 November to 6 December 2022, give through The Big Give to double the value of your donation at no additional cost to you!
This time on Multiple sclerosis breaking it down, we’ll be talking about thinking problems in MS. Problems with thinking and memory affect around half of all people with MS. Cognition is the medical term for thinking, and problems with thought and memory are known as cognitive problems. Issues include memory, attention span, planning, decision-making, understanding or concentration.
To explain cognition issues in MS, and some strategies that may help you, we chatted with Professor Roshan das Nair. Helena and Debs also share their experiences with cognition difficulties and what they do to manage them.
Episode notes:
- Thinking problems in MS - Information from the MS Trust: mstrust.org.uk/information-support/health-wellbeing/thinking-and-memory-problems
-Staying Smart - tool from the MS Trust: mstrust.org.uk/information-support/staying-smart
-Brain health - article from the MS Trust: mstrust.org.uk/a-z/brain-health
-Exercise is good for your brain - research update from the MS Trust: mstrust.org.uk/research/research-updates/210203-exercise-good-brain
- MS Trust Christmas cards - shop.mstrust.org.uk/christmas-cards/
Next episodeThe next episode will be on the most asked questions in 2022.
In the new year we will be doing a programon altered sensations and MS, those weird odd, creeping, crawling, fizzing and sometimes painful feelings you get. If you have anything to say or to ask about this topic we would love to hear from you. Your comment may even be featured on the episode! We would REALLY love to know any life hacks you have for dealing with altered sensations. Send in your tips or questions (they can remain totally anonymous) on a voice note or message via WhatsApp on 07458303326. Alternatively, you can email comms@mstrust.org.uk.
This time on the MS Trust podcast we’ll be talking about eye problems in MS. Multiple sclerosis can affect your vision in several ways. Problems with your sight, such as optic neuritis, can be an early symptom of MS, but can also arise if you've had MS for some time.
To try and explain the ins and outs of visual problems we chat to Dr Benson Chen a neuro-ophthalmologist, about some common eye issues in MS and ask him some questions the MS community sent us.
We also chat to Deb about her own experiences with eye issues that eventually led to her MS diagnoses.
Episode notes:
- Visual problems in MS - Information from the MS Trust: mstrust.org.uk/a-z/visual-problems
-Optic neuritis - article from the MS Trust: mstrust.org.uk/a-z/optic-neuritis
-Double vision (diplopia) - article from the MS Trust: mstrust.org.uk/a-z/double-vision-diplopia
-Nystagmus - article from the MS Trust: mstrust.org.uk/a-z/nystagmus
Next episodeOur next podcast will be on the topic of Cognition and MS. If you have anything that you'd like to ask about this subject, we'd love to hear from you and your comment may even be featured on the episode! (it can remain totally anonymous). You can drop us a voice note or message via WhatsApp on 07458303326. Alternatively, you can email comms@mstrust.org.uk
We are back with part two of our Sex and MS podcast. At the MS Trust we have produced content about Sex and MS for many years, and if there is one thing that we have learnt, it is that sex is a tricky subject to talk about. That’s why, we’ve once again invited subject experts, Denise Middleton and Lesley Catterall to answer some of the of your questions around sex and MS for men.
We also chat with Dom from the MS guide, about his own experiences on the subject of sex and MS.
Episode notes:
- The MS Guide- Dom's YouTube channel www.youtube.com/channel/UCIpq0cm2wIfKJ6H8xs2AxGA
- Sexual problems for men with MS A-Z of MS - Information from the MS Trust: -mstrust.org.uk/a-z/sexual-problems-men-ms
- Relationships and family life - Information from the MS Trust: mstrust.org.uk/life-ms/relationships-and-family-life
- Ask the expert: Sex and MS - Information from the MS Trust: mstrust.org.uk/news/views-and-comments/ask-expert-sex-and-ms
-Reduced sexual desire - Information from the MS Trust: mstrust.org.uk/a-z/reduced-sexual-desire
- MS Trust booklet; Sex & MS: a guide for men: shop.mstrust.org.uk/publications/sex-ms-a-guide-for-men/
- Relationships and MS - Podcast from the MS Trust: mstrust.org.uk/resources/podcasts-ms-trust/relationships-and-ms
- Sex and Ms part one (women) - Podcast from the MS Trust: mstrust.org.uk/resources/podcasts-ms-trust/sex-and-ms-part-1-women
We are back with part two of our Sex and MS podcast. At the MS Trust we have produced content about Sex and MS for many years, and if there is one thing that we have learnt, it is that sex is a tricky subject to talk about. That’s why, we’ve once again invited subject experts, Denise Middleton and Lesley Catterall to answer some of the of your questions around sex and MS for men.
We also chat with Dom from the MS guide, about his own experiences on the subject of sex and MS.
Episode notes:
- The MS Guide- Dom's YouTube channel www.youtube.com/channel/UCIpq0cm2wIfKJ6H8xs2AxGA
- Sexual problems for men with MS A-Z of MS - Information from the MS Trust: -mstrust.org.uk/a-z/sexual-problems-men-ms
- Relationships and family life - Information from the MS Trust: mstrust.org.uk/life-ms/relationships-and-family-life
- Ask the expert: Sex and MS - Information from the MS Trust: mstrust.org.uk/news/views-and-comments/ask-expert-sex-and-ms
-Reduced sexual desire - Information from the MS Trust: mstrust.org.uk/a-z/reduced-sexual-desire
- MS Trust booklet; Sex & MS: a guide for men: shop.mstrust.org.uk/publications/sex-ms-a-guide-for-men/
- Relationships and MS - Podcast from the MS Trust: mstrust.org.uk/resources/podcasts-ms-trust/relationships-and-ms
- Sex and Ms part one (women) - Podcast from the MS Trust: mstrust.org.uk/resources/podcasts-ms-trust/sex-and-ms-part-1-women
At the MS Trust, we know that talking about sex and sexual health isn’t easy. Many people find it an awkward or embarrassing topic to discuss, whether that’s with partners or health professionals. That’s why, we’ve invited subject experts, MS nurses, Denise Middleton and Lesley Catterall to answer some of the questions you may want to know the answer to but didn’t want to ask.
Before that we hear from Roxy, aka Multiple Sclerosis Fashionista about their experiences of sex as someone living with MS and hear some tips she has for others.
Episode notes:
- Sexual problems for women with MS A-Z of MS - Information from the MS Trust: mstrust.org.uk/a-z/sexual-problems-women-ms
- Relationships and family life - Information from the MS Trust: mstrust.org.uk/life-ms/relationships-and-family-life
- Ask the expert: Sex and MS - Information from the MS Trust: mstrust.org.uk/news/views-and-comments/ask-expert-sex-and-ms
-Reduced sexual desire - Information from the MS Trust: mstrust.org.uk/a-z/reduced-sexual-desire
- MS Trust booklet; Sex & MS: a guide for women: shop.mstrust.org.uk/publications/sex-ms-a-guide-for-women/
- Relationships and MS - Podcast from the MS Trust: mstrust.org.uk/resources/podcasts-ms-trust/relationships-and-ms
Disease modifying drugs (DMDs) are a group of treatments for people with multiple sclerosis. Most DMDs are for people with relapsing remitting MS (RRMS), but there are some that are licenced for use by people with progressive MS. For people with RRMS, disease modifying drugs reduce the number of relapses you might experience as well as reducing the severity of any relapses you do have.
There are a wide range of drugs approved for use by the NHS in the UK. Each drug offers a different combination of benefits and possible risks.
In this podcast we are going to be chatting to neurologist Kate who is going to explain the ins and outs of DMDs and how you can go about choosing one. Then we will be talking to Sam, who shares her personal journey of choosing DMDs.
Episode notes:
- Disease modifying drugs - MS Trust A-Z: mstrust.org.uk/about-ms/ms-treatments/disease-modifying-drugs-dmds
- Frequently asked questions about DMD - Information from the MS Trust: mstrust.org.uk/about-ms/ms-treatments/ms-decisions/frequently-asked-questions-faqs
-MS Decisions DMD Tool - Information from the MS Trust: mstrust.org.uk/about-ms/ms-treatments/ms-decisions-aid
- Disease modifying drugs- MS Trust booklet: shop.mstrust.org.uk/publications/disease-modifying-drugs
Next episode
Our next two podcasts will be on the topic of sex and MS. One for men and one for women, or people who identify as either. Now we know that this is a topic that not everyone will feel comfortable talking about, but we want that to change as it's a very important subject. If you have any questions or stories you would like to share, we’d love to hear from you. Your comment may even be featured on the episode! You can drop us a voice note or message via WhatsApp on 07458303326. Alternatively, you can email mystory@mstrust.org.uk. It can be totally anonymous, if you wish.
WhatsApp messages aren’t monitored by our MS Enquiry Service and Helpline team so if you’ve got a question about life with MS that needs answering, please contact them directly on 0800 032 38 39 or email ask@mstrust.org.uk.
Disease modifying drugs (DMDs) are a group of treatments for people with multiple sclerosis. Most DMDs are for people with relapsing remitting MS (RRMS), but there are some that are licenced for use by people with progressive MS. For people with RRMS, disease modifying drugs reduce the number of relapses you might experience as well as reducing the severity of any relapses you do have.
There are a wide range of drugs approved for use by the NHS in the UK. Each drug offers a different combination of benefits and possible risks.
In this podcast we are going to be chatting to neurologist Kate who is going to explain the ins and outs of DMDs and how you can go about choosing one. Then we will be talking to Sam, who shares her personal journey of choosing DMDs.
Episode notes:
- Disease modifying drugs - MS Trust A-Z: mstrust.org.uk/about-ms/ms-treatments/disease-modifying-drugs-dmds
- Frequently asked questions about DMD - Information from the MS Trust: mstrust.org.uk/about-ms/ms-treatments/ms-decisions/frequently-asked-questions-faqs
-MS Decisions DMD Tool - Information from the MS Trust: mstrust.org.uk/about-ms/ms-treatments/ms-decisions-aid
- Disease modifying drugs- MS Trust booklet: shop.mstrust.org.uk/publications/disease-modifying-drugs
Next episode
Our next two podcasts will be on the topic of sex and MS. One for men and one for women, or people who identify as either. Now we know that this is a topic that not everyone will feel comfortable talking about, but we want that to change as it's a very important subject. If you have any questions or stories you would like to share, we’d love to hear from you. Your comment may even be featured on the episode! You can drop us a voice note or message via WhatsApp on 07458303326. Alternatively, you can email mystory@mstrust.org.uk. It can be totally anonymous, if you wish.
WhatsApp messages aren’t monitored by our MS Enquiry Service and Helpline team so if you’ve got a question about life with MS that needs answering, please contact them directly on 0800 032 38 39 or email ask@mstrust.org.uk.
Our relationships with the people around us, whether family, friends, partners or work colleagues, are important for our emotional health and practical support. But sometimes MS can feel like a barrier to those relationships, making it harder to maintain the ones that matter to us or develop new ones in the future. So today we are going to dive into some of those issues. We will be joined by Billy from shift. MS who lives with MS himself and Flora from or MS Trust helpline.
Episode notes:
- Relationships and family life - Information from the MS Trust: mstrust.org.uk/life-ms/relationships-and-family-life
- Talking with fiends and family about MS - Information from the MS Trust: mstrust.org.uk/life-ms/family-and-relationships/talking-friends-and-family
-Information for carers - Information from the MS Trust:mstrust.org.uk/life-ms/family-and-relationships/information-carers
- MS Trust booklet; Someone I know has MS: shop.mstrust.org.uk/publications/someone-i-know-has-ms/
- MS Trust booklet; Kid's guide to MS: shop.mstrust.org.uk/publications/kids-guide-to-ms/
- Caring for someone with MS - Podcast from the MS Trust: mstrust.org.uk/resources/podcasts-ms-trust/caring-someone-ms
-MS Trust Facebook Group: facebook.com/groups/multiplesclerosistrust
-Shift.ms -a social network and community for people with MS: shift.ms
-Shift.ms Buddy system: shift.ms/the-buddy-network
-Relationships and MS - webinar from MS Society Ireland: youtube.com/watch?v=zcp92YezvZM
Next episode
Our next podcast will be on disease modifying Drugs and MS, where we are hoping to dive into the world of MS treatments and answer some questions on the subject that you may have. If you have anything to say about DMT’s or that you want to ask about we would love to hear from you and your comment may even be featured on the episode! (it can remain totally anonymous) You can drop us a voice note or message via WhatsApp on 07458303326. Alternatively, you can email mystory@mstrust.org.uk. It can be totally anonymous.
WhatsApp messages aren’t monitored by our MS Helpline team so if you’ve got a question about life with MS that needs answering, please contact them directly on 0800 032 38 39 or email ask@mstrust.org.uk.
As temperatures start to soar in the UK we catch up with Dr Nikos Evangelou about how and why heat affects people with MS. We also share some of your thoughts and real life experiences of heat sensitivity as well as tips on how to deal with it.
Episode notes:
- Temperature Sensitivity - Information from the MS Trust: mstrust.org.uk/a-z/temperaturesensitivity
- Can't take the heat - article from the MS Trust: mstrust.org.uk/news/cant-take-heat
-Uhthoff's Phenomenon mstrust.org.uk/a-z/uhthoffs-phenomenon
- How does cold weather affect MS? - Podcast from the MS Trust: mstrust.org.uk/resources/podcasts-ms-trust/how-does-cold-weather-affect-ms
- Dr Nikos Evangelou's paper on Temperature sensitivity in multiple sclerosis: pubmed.ncbi.nlm.nih.gov/30377640/
Next episode
Our next podcast will be on relationships and MS. This could be romantic relationships, family connections, or even friendships. We get a lot of questions relating to this topic, including what it's like to date with MS, how to talk to a partner or family member that doesn't understand the condition or even comments about fears that relationships with others will change after diagnosis. If you have an experience you'd like to share or a question to ask, we would love to hear from you. Your comment may even be featured on the episode! (it can remain totally anonymous if you wish) You can drop us a voice note or message via WhatsApp on 07458303326. Alternatively, you can email mystory@mstrust.org.uk.
WhatsApp messages aren’t monitored by our MS Helpline team so if you’ve got a question about life with MS that needs answering, please contact them directly on 0800 032 38 39 or email ask@mstrust.org.uk.
Today we are talking about the often misunderstood topic of advance care planning. The MS Trust recently published an information book titled ‘Thinking ahead: setting out your wishes for your future care and treatment’. It’s a useful resource designed to help you to understand and share your personal values, and preferences, for your future medical care with your loved ones and your healthcare team.
The resource was produced by Ali, a member of the Information team here at the MS Trust, as well as MS Specialist Nurses and subject experts, Ellie Garlick and Sarah Roderick. In this episode we have all three along to shed some more light on the subject of advance care planning. What is an Advance care plan and why should you have one, how can you write one, when should you consider writing one and who can help with writing one?
**There are a few mentions of end of life care which some listeners may find upsetting.
Episode notes
- MS Trust booklet; Thinking ahead: shop.mstrust.org.uk/publications/thinking-ahead-setting-out-your-wishes/
- MS Trust YouTube channel: youtube.com/mstrust
- Advance care plan resource for England and Wales: advancecareplan.org.uk/
- Anticipatory care planning toolkit for Scotland:** ihub.scot/project-toolkits/anticipatory-care-planning-toolkit/anticipatory-care-planning-toolkit/ - Advance care plan resource document templates – includes examples of templates for advance care planning, advance statements and advance decisions to refuse treatment: advancecareplan.org.uk/examples-document-templates/
-My Living Will – information about living wills, advance decisions and advance statements: mylivingwill.org.uk/
-Make, register or end a lasting power of attorney in England and Wales: gov.uk/power-of-attorney
-Setting up a power of attorney in Scotland: mygov.scot/power-of-attorney
-Setting up an enduring power of attorney in Northern Ireland: nidirect.gov.uk/articles/managing-your-affairs-and-enduring-power-attorney
Most people with MS receive their diagnosis as adults in the midst of working life. This latest podcast from the MS Trust talks about what working life is like when you have multiple sclerosis. We discuss what rights people with MS have at work, how to disclose health conditions to an employer, what to do when you feel like you have to give up work or reduce your hours and much more.
Joining us on this episode is Discrimination Case Worker, Lance Baynham, who covers your rights and what the Equality Act means for people with MS. We also chat to Gideon Schulman, a HR professional and person with MS, about his own experiences.
Episode notesAwareness week webinar on work and MS: mstrust.org.uk/get-involved/ms-awareness-week/work-and-ms-webinar
- MS Trust web page on 'Working life with MS':
mstrust.org.uk/life-ms/your-finances/working-life
- MS Trust web page on Legal advice:
mstrust.org.uk/life-ms/your-finances/legal-advice
- MS Trust A-Z Equailty Act: mstrust.org.uk/a-z/equality-act
- MS Trust personal story from Gideon: mstrust.org.uk/news/what-its-be-orthodox-rabbi-spms-during-hanukkah
-Mediation service for employment disputes from Yesslaw: drawmediation.org.uk
-Law Centres offer legal advice, casework and representation: lawcentres.org.uk
-Citizens Advice bureau citizensadvice.org.uk/work/rights-at-work
-Access to work: gov.uk/access-to-work/apply
-Acas gives employees and employers free, impartial advice on workplace rights, rules and best practice: acas.org.uk/
Multiple sclerosis is a very active area of scientific research. Developing new treatments for MS can be a long and complicated process. In our latest podcast episode, we learn about the journey an MS treatment goes on with Dr Nick Cunniffe, a researcher in Cambridge. We also chat to Faisal about what it is like to take part in a clinical trial when you have MS.
Episode notes
- MS Awareness week webinars: mstrust.org.uk/MSAW
- MS Awareness week Research webinar: mstrust.org.uk/get-involved/ms-awareness-week/ms-research-webinar
- MS Trust A-Z of MS : mstrust.org.uk/a-z
- MS Trust contact us: mstrust.org.uk/what-we-do/contact-us
- Getting involved in a clinical trial: mstrust.org.uk/research/getting-involved-research
- Hellie's clinical trial adventures: mstrust.org.uk/about-ms/ms-research/hellies-clinical-trial-adventures
- All current clinical trials going (not just MS): clinicaltrials.gov
- The CCMR2 trial - www-neurosciences.medschl.cam.ac.uk/jones-coles-group/ccmr2-a-trial-of-metormin-and-clemastine-as-remyelinating-drugs-in-ms/
MS is a condition affecting the central nervous system (the brain and spinal cord). It’s estimated that 130,000 people in the UK have MS.
In this podcast we chat to two guests about MS. Simon, from our MS Trust information team, who answers questions from people affected by MS on a daily basis, via email and our MS helpline. He gives us an MS 101 lesson, covering topics such as how MS is diagnosed, who gets MS, what treatments are there for MS and much more.
We also chat to Hugh Nibloe who is a Wheelchair Curling World Championships silver medal winner and Wheelchair Curling Paralympian for Team GB who lives with MS.
Episode notes
- MS Trust what is MS?: mstrust.org.uk/about-ms/what-ms
- MS trust how is MS diagnosed?: mstrust.org.uk/about-ms/what-ms/how-ms-diagnosed
- MS Trust newly diagnosed: mstrust.org.uk/about-ms/newly-diagnosed
- MS Trust A-Z of MS : mstrust.org.uk/a-z
- MS Trust contact us: mstrust.org.uk/what-we-do/contact-us
- MS Awareness week webinars: mstrust.org.uk/MSAW
- Diagnosing MS - Lumbar puncture video: youtube.com/watch?v=dGmZt6XmZAQ
- Diagnosing MS - Evoked potentials tests video: youtube.com/watch?v=DttdmivruP4
- Diagnosing MS - MRI scan video youtube.com/watch?v=Erz_nGg4iII
- Wheelchair curling paralympic.org/wheelchair-curling
Our MS Trust Enquiry Service helpline is available from Monday to Friday (except UK bank holidays) from 9am to 5pm. Outside these hours you can leave us a message and we'll get back to you as soon as we can. Call our Enquiry Service on 0800 032 38 39 or you can email us ask@mstrust.org.uk. It’s available to anyone who wants to know more about MS, not just those currently living with the condition.
Our volunteer Will returns with another episode taking a peek behind the scenes at how the MS Trust works. This time, he talks to Simon and Janice from the MS Trust Information team.
Whether you have recently been diagnosed, want to know more about a symptom you are experiencing, or need information on the different MS drugs and treatments, our MS Trust helpline team are here to answer your questions. In this episode Will chats to Janice and Simon about questions they get asked, and other work they do at the MS Trust such as ensuring everyone with MS can access the treatments and services they need and deserve.
Episode notes:- What we do;mstrust.org.uk/what-we-do/about-ms-trust - MS helpline and information;mstrust.org.uk/what-we-do/about-us/ms-helpline-and-information - Drugs in development; mstrust.org.uk/about-ms/ms-treatments/drugs-development
Fatigue is one of the most common symptoms of multiple sclerosis.
It's described as a feeling of exhaustion that's out of all proportion to any activity you may have been doing.
People with MS often find it had to explain fatigue to others so in this episode we ask how you would describe life with fatigue and what tips you would give for managing it. Plus, occupational therapist, Kate Hayward, shares some of her own fatigue management techniques.
Episode notes- MS Trust A-Z on fatigue: mstrust.org.uk/a-z/fatigue
- MS Trust Ask the expert about fatigue: mstrust.org.uk/news/views-and-comments/ask-expert-coping-ms-fatigue
-MS Trust book - Living with fatigue (free to download or send after): shop.mstrust.org.uk/publications/living-with-fatigue/
-MS Trust Research update: Could cocoa help MS fatigue? : mstrust.org.uk/research/research-updates/181015-could-cocoa-help-fatigue
-MS Awareness week 2022: mstrust.org.uk/get-involved/ms-awareness-week
28 February 2022
Will returns with another episode taking a peek behind the scenes at how the MS Trust works. This time, he talks to MS Trust CEO, David Martin and Chair of Trustees, Caitlin Sorrell to find out more about how the MS Trust supports people with MS, their personal connections to multiple sclerosis and what advice they would give to someone with MS.
Episode notes:
- David and Caitlin were interviewed by our volunteer Will
- MS Trust listening project survey; www.surveymonkey.co.uk/r/Listenexternal
- More about the MS decision aid; mstrust.org.uk/about-ms/ms-treatments/ms-decisions-aid
- Get involved with the MS Trust; mstrust.org.uk/get-involved
- Learn more about leaving a legacy; mstrust.org.uk/get-involved/legacies-and-memory
- The Neurological Alliance; neural.org.uk
- The UK MS Register; ukmsregister.org
Menopause is the hot topic at the moment, with more and more people speaking up about the problems and issues it can bring. But did you know it can also affect your MS? In this episode we talk to Neurologist Ruth Dobson about how and why menopause and perimenopause can affect MS and what options there are to treat it. We also catch up with Hettie, who talks about how menopause affected her and her MS.
Episode notes- MS Trust A-Z on MS and menopause: mstrust.org.uk/search/menopause
- Can the menopause affect MS Research update: mstrust.org.uk/research/research-updates/update151013-menopause-MS
- BBC article about HRT to be sold over the counter:
bbc.co.uk/news/health-60227881
-The Wim Hof method as discussed in podcast: en.wikipedia.org/wiki/Wim_Hof
-Davina McCall; sex, myths and the Menopause www.channel4.com/programmes/davina-mccall-sex-myths-and-the-menopause
To start the year off, we caught up with MS Trust CEO, David Martin to ask questions like, "How is the MS Trust different to the MS Society?" and learn about our upcoming multiple sclerosis related projects. We're also joined by new Volunteer Manager, Mark to hear about what flexible volunteering opportunities are available in 2022.
Episode notes:
- Discover ways to get involved with the MS Trust: mstrust.org.uk/get-involved
- Contact our volunteering email address: volunteer@mstrust.org.uk
In our last podcast of 2021 we speak to Dr Nikos Evangelou about how cold temperatures affect people with MS. We also share some of your thoughts and real life experiences of cold sensitivity.
Episode notes:
- Temperature Sensitivity - Information from the MS Trust: mstrust.org.uk/a-z/temperaturesensitivity
- Cold sensitivity and MS - Information from the MS Trust: mstrust.org.uk/news/views-and-comments/chilled-out-cold-sensitivity-and-ms
- Dr Nikos Evangelou's paper on Temperature sensitivity in multiple sclerosis: pubmed.ncbi.nlm.nih.gov/30377640/
For many people with multiple sclerosis, relapses are a big part of the condition. In this episode we discuss what relapses are, how to recognise if you're having a relapse and how to deal with them. We hear from MS Nurse Miranda Olding about what causes a relapse and how they are treated, and then we chat with Simon from our MS Trust Enquiry Line about some of the most common questions we get around relapses.
Episode notes:
- Managing relapses - Information from the MS Trust: mstrust.org.uk/about-ms/ms-symptoms-and-relapses/managing-relapses
- Ask the Expert - YouTube video of Miranda Olding explaining relapses in MS: youtu.be/KnQd5Z-xDYc
- Am I having a relapse? - YouTube video from the MS Trust: youtu.be/YNEvmBrEQ7Y
We discuss the 'hot topic' of HSCT for MS, hearing from Claire in the Information team about the criteria for receiving stem cell transplantation. Our guests also include Chris who was eligible for HSCT on the NHS and Gwen who went to Russia to seek treatment for PPMS. Both share their experiences of HSCT and give advice for anyone else considering the option.
Episode notes:-MS Trust A-Z page - Stem cells and MS: mstrust.org.uk/a-z/stem-cells-and-ms-ahsct
- YouTube video on stem cell treatment in MS - an introduction: youtu.be/40hJmdx_kbo
- MS Trust page - Ask the expert: stem cell transplantation: mstrust.org.uk/news/ask-expert-stem-cell-transplantation
- MS Trust A-Z page - Star-MS trial for HSCT in MS: mstrust.org.uk/a-z/star-ms-trial-hsct-ms
- YouTube video on disease modifying drugs for multiple sclerosis with neurologist Dr Sharmilee Gnanapavan: youtube.com/watch?v=ZBhO3qnIlDQ
- MS Trust page - Multiple sclerosis and disease modifying drugs, what are my options?: mstrust.org.uk/news/multiple-sclerosis-and-disease-modifying-drugs-what-are-my-options
- Watch Chris' YouTube vlogs about his HSCT journey: youtube.com/c/HSCTforMS/videos
- AIMS is the UK's first registered charity to support UK residents with Autoimmune Disease and Multiple Sclerosis, with an emphasis on HSCT. View the AIMS website: aimscharity.org/
- Facebook group for all UK residents who are HSCT patients or prospective HSCT patients, their family and caregivers and for people seeking information about HSCT. View UK HSCT for MS & Autoimmune Diseases Facebook group: facebook.com/groups/ukhsct/
- Europe's official accreditation body in the field of haematopoietic stem cell transplantation and cellular therapy. View EBMT website: ebmt.org/jacie-accreditation
- Introducing, Selma Blair available from Discovery+: discoveryplus.co.uk/show/introducing-selma-blair
Guest presenter and MS Trust volunteer, Will, returns to our archives. This time, he looks at the role Pharmacists play within an MS service, what support they offer and the latest drugs in development for people with MS. Featuring input from MS Pharmacists Brina and Aoife as well as Gemma from the MS Trust.
Episode notes:
- MS Trust Page - Ask the expert: MS pharmacists: mstrust.org.uk/news/ask-expert-ms-pharmacists
- MS Trust Page - A-Z Pharmacists:mstrust.org.uk/a-z/pharmacists/
- If you've got questions on this topic or anything else contact us: mstrust.org.uk/what-we-do/contact-us
In this episode, we discuss some of the barriers people of colour may face when diagnosed with a condition that in the past has been seen as a 'white or Caucasian condition'. We talk to Natalie, who set up the Black MS Foundation to raise awareness and provide a space for black people to discuss their own MS experiences. We also dive into the background on who gets MS and how different ethnicities are affected by multiple sclerosis with Claire from our information team.
Episode notes:
- View the Black MS Foundation website: blackmsfoundation.org/
- View the Black MS Instagram profile: instagram.com/blackmsfoundation/
- MS Trust page on how common is MS?: mstrust.org.uk/a-z/how-common-multiple-sclerosis
- MS Trust page on who gets MS and why?: mstrust.org.uk/news/views-and-comments/who-gets-ms-and-why
In this exercise and MS themed episode we discuss how exercise can benefit people with MS. In the past, people with multiple sclerosis were advised to avoid exertion. It turns out that this was not good advice. Regular, moderate exercise is now known to be an important part of maintaining good health and well-being for people with MS.
In this episode we talk to Claire the head of the information and engagement team at the MS Trust, about MS and exercise and how it can it can help with many MS symptoms and then we will be chat to Emily and Nick who both have MS about how they find exercising helps them.
Episode notes:
- MS Trust pages on Exercise page: https://mstrust.org.uk/life-ms/exercise
- MS Trust Pilates videos with Neurophysiotherapist Joanne Pritchard : https://mstrust.org.uk/life-ms/exercise/move-it-ms-pilates-jo-pritchard
- View Emily's blog: https://thewibblydinosaur.com/
- View Nick's Instagram profile: instagram.com/dad_to_three_boys/
- Laurens’s sea swimming https://instagram.com/loey_lolo
In the first episode of this new series, our volunteer Will meets Megan, Head of Health Professionals Programmes at the MS Trust and MS Support Nurse, Laura. The two talk about how MS nurses are trained, what support the MS Trust offers to health professionals as well as looking at what the future holds for MS care and MS treatments.
Episode notes:
- This episode was produced by our volunteer Will
- More about MS Specialist Nurses: mstrust.org.uk/a-z/ms-specialist-nurses
- Find your nearest MS services: mstrust.org.uk/about-ms/ms-services-near-me
- UK MS Specialist Nurse Association: mstrust.org.uk/a-z/ukmssna-uk-ms-specialist-nurse-association
- Advanced MS podcast: mstrust.org.uk/talking-advanced-ms-and-advanced-ms-champions
- Laura's London Marathon JustGiving page: justgiving.com/team/MStrustlejog?utm_source=Sharethis&utm_medium=team&utm_content=MStrustlejog&utm_campaign=pfp-email&utm_term=509e197a7ede44328178a761df886b14
In this back to school themed episode we speak to Suzy, a teacher with MS and Nick, a dad to three boys who was diagnosed with MS at the start of lockdown. With schools going back after the summer holidays, we discuss everything from the challenges of home schooling to talking to children about multiple sclerosis.
Episode notes:
- This episode was produced by our volunteer Will
- MS Trust newly diagnosed page: mstrust.org.uk/about-ms/newly-diagnosed
- MS Trust Talking with your kids about MS free publication: shop.mstrust.org.uk/publications/talking-with-your-kids-about-ms/
- View Nick's Instagram profile: instagram.com/dad_to_three_boys/
In part two of mobility problems and mobility aids, we chat to neuro-physiotherapist Jody Barber. This includes looking at how mobility problems may present in MS and what to do if you think you need a mobility aid as well as some different exercises you can do to help improve your mobility. Jody also discusses the psychological barriers people may face when needing to use a mobility aid for the first time, why it's okay to feel hesitant and how to overcome these barriers.
Episode notes:
- This episode was produced by our volunteer Will
- MS Trust page on Walking difficulties: mstrust.org.uk/a-z/walking-difficulties
- MS Trust page on exercise: mstrust.org.uk/life-ms/exercise
- Watch the MS Society's exercises for MS symptoms: mssociety.org.uk/care-and-support/everyday-living/staying-active/exercises-for-ms-symptoms
- Watch yoga with Jody Barber: https://youtu.be/6MVUJE_JvcA
Many people with MS can experience issues with their walking and mobility. Difficulties can include unsteadiness, tripping and stumbling, and being less confident when walking. In this episode we chat with blogger, Emily, who was diagnosed with relapsing remitting MS in 2010. Emily shares her experience of using walking aids and discusses how using a wheelchair helped change her life.
Episode notes:
- This episode was produced by our volunteer Will
- Read Emily's multiple sclerosis blog at thewibblydinosaur.com
- MS Trust page on Walking difficulties: mstrust.org.uk/a-z/walking-difficulties
Guest presenter and volunteer, Will, is back to delve into another area of our MS archives. In this episode he turns his focus to balance and dizziness in multiple sclerosis, and shares ways to help manage these symptoms. Featuring input from Neuro and Vestibular Physiotherapist, David Herdman.
Wills references:
- Source Video: youtube.com/watch?v=OLOgSuceaSs
- Just One Thing (with Michael Mosley) - Stand on One Leg: bbc.co.uk/sounds/play/m000w3lh
- MS Trust page on balance: mstrust.org.uk/a-z/balance
There are over 40,000 people living with advanced MS in the UK. These people can feel invisible to the healthcare system, with little interaction with health professionals and limited access to disease modifying drugs. In this episode we talk to Paru and Rob from the MS Trust about why we are raising funds to place more health professionals in the NHS to try to help. We also talk to MS Champion Nicki Hare about what life with advanced multiple sclerosis is like and what MS champions do to help.
Show notes:
- Help advance MS care and drastically improve the quality of life for some of the 40,000 people living with advanced multiple sclerosis. Visit mstrust.org.uk/advancing-ms-care
Guest presenter and MS Trust volunteer, Will, continues raiding our MS archives. This time he's talking about pain and multiple sclerosis. Featuring input from consultant nurse in pain management, Sue Barnes.
Will's references:
- Source Video: youtube.com/watch?v=jg3Cwpk_0dI
- Patient-Led Engagement for Access (to medical cannabis): pleacommunity.org.uk/
- Project Twenty21 from Pr David Nutt's Drug Science Charity: drugscience.org.uk/project-twenty21/
- Prevalence of chronic pain in the UK: bmjopen.bmj.com/content/6/6/e010364
- Surgical treatment of trigeminal neuralgia: pubmed.ncbi.nlm.nih.gov/20953805/
- MS Trust page on pain: mstrust.org.uk/pain
In this Carers Week special we hear from Martin who was diagnosed with MS around 40 years ago and his wife Lizzy, who offers support through unpaid care. We also chat with Roma from Carers in Hertfordshire about what help and support is available for carers across the UK.
Guest presenter and MS Trust volunteer, Will, was diagnosed with multiple sclerosis in 2015. Here he raids our archive to talk about disease modifying drugs (DMDs). Featuring input from MS nurse advisor, Nikki Embrey, Will covers key questions including how to tell whether a treatment is working, how long to stick with a DMD that is causing intolerable side effects, and whether you can have the flu vaccine when you're on a DMD. All views are Will's own.
Will's references:
- Source video: youtube.com/watch?v=AjVWf4tFjns
- Brain Health: Time Matters in Multiple Sclerosis report: msbrainhealth.org/report
- MS Trust page on disease modifying drugs (DMDs): mstrust.org.uk/dmd
Did MS or the pandemic make you rethink your career path? In this episode we talk to Will and Diva, two performers who used their MS diagnosis as a catalyst to change direction in their working lives.
During the pandemic many people with MS were told to shield. But what was it like for the keyworkers with MS? In this episode of our podcast we chat to Mel, about her experiences of working as a nurse during lockdown. And speaking of nurses, we also chat to MS Trust CEO David Martin, about what happened to the MS Nurses and the MS Trust Nurse program during 2020.
MS is often diagnosed in your 20's when a lot of people are just starting out their working career. During 2020 many people found themselves on furlough, or being made redundant. In this episode we speak to Amy, who started not one but 2 new jobs during 2020. Amy also runs an online support group for young people with MS and we chat about how that was a great help during the year.
During 2020 we had to learn to live with the new norm where everything moved to online. But how does that work when you are expecting a baby? In this episode we chat to Jenna and Annie, two ladies with MS who both found out they were expecting during lockdown.
During lockdown a lot of us felt drained from doing nothing at all. Many people with MS struggle with fatigue during the best of times, but lockdown made things several times worse. In this episode we meet Ant Chapman, a musician and educator who worked all the way through lockdown remotely. We talk about his MS journey and how getting creative and starting to stream music making sessions on Twitch helped him get through lockdown. Ant even made this podcast theme tune as a part of a live stream for the MS Trust.
This past year has been tough on all of us. But imagine being diagnosed with a lifelong condition such as multiple sclerosis in the middle of it all. In this podcast the MS Trust chat to two young women, to find out how they coped with their MS diagnosis in the middle of a pandemic.
In this last episode of "It's all in your head", we chat about loneliness and anxiety with Claire from the MS Trust Information Team. We also talk to Catherine Seymour from the Mental Health Foundation about the impact of lockdown on our mental health, and how we can ease ourselves back to normality when lockdown ends.
In this fifth episode of "It's all in your head" we chat to Sara Coffey, a dramatherapist, who explains more about dramatherapy as an approach to dealing with mental health problems. Sara has worked with people with MS in the past, so shares some brilliant insights into how this kind of therapy can help, and dispels some common myths around it. We also talk to Jessie Ace. Jessie is a podcaster, illustrator, author, and all round inspiring lady.
The fourth episode of our 'It's all in your head' series focuses on MS nurses and how they can help people with MS with their mental health. We speak to MS Nurse Sally Fox about what an MS nurse does from day to day, why she thinks mental health is important and how you could talk to your MS nurse about it. She also shares some great tips like breathing exercises that you could try yourself. We also talk about our 'MS Trust in..
The third episode of the series focuses on anxiety, a feeling many people with MS will be familiar with. First of all we hear from Mike, a person with MS who talks about his experience of anxiety since being diagnosed with MS, as well as during the coronavirus outbreak. We then catch up with Jo Johnson, a neuropsychologist who guides us through a few exercises you can follow along with. These exercises are based on a psychological therapy called acceptance and commitment therapy (ACT). They encourage you to be more aware of your feelings and approach anxiety in a slightly different way.
The second episode of new series focusses on the newly diagnosed and the impact an MS diagnosis can have on your mental health. Learning that you have a lifelong condition is a huge thing to try and deal with, so how do you get your head around that? In the podcast, we hear from Emily and Will about what has helped them come to terms with their diagnosis and Claire from our Information Team talks about some of the coping strategies which can help.
The first episode in our new podcast series all about MS and mental health. We chat to Gemma from the MS Trust’s Information Team about why mental health problems are more common in MS, neuropsychologist Dr Anita Rose shares her top tips for taking care of your mental wellbeing, and Chris and Carla, who both live with MS, share their experiences.
We're living in uncertain times and we know that lots of you, understandably, have questions about the coronavirus and MS. So for this podcast, we've pulled together some of the questions that have cropped up the most and asked Claire, who works in our Information Team, to answer them. We also chat to Carla King, who lives with MS, about her experience of dealing with lockdown. Please note: all information and advice in this podcast is correct at the time of publication.
In the podcast, we speak to Dr Anita Rose about how you can take care of our mental health during the coronavirus crisis. We also chat to Will Berard, who lives with MS, about how he is coping in the COVID-19 lockdown. Please note: all information and advice in this podcast is correct at the time of publication. For the latest coronavirus information please visit www.gov.uk/coronavirus or www.nhs.uk/coronavirus
A lot of people with MS are very worried and confused right now about the coronavirus outbreak. We talk to Janice from the MS Trust info team about what coronavirus COVID-19 is and how it could affect your MS. We also talk to two members of the MS community about how they are coping and ask if they have some ideas to share on how to not get too anxious about it all. Please note: all information and advice in this podcast is correct at the time of publication.
It's thought that sleep disturbances are experienced by around half of people with MS, yet sleep disorders are still under-recognised and under-diagnosed among this group of people. We spoke to consultant neurologist Dr Kirstie Anderson, who has a special interest in sleep problems to find out more. Here she talks about which sleep disorders are more common in MS and shares her tips for getting a better night's sleep.
Welcome to the inaugural MS Trust Poodcast, all about – you guessed it – toilet troubles! Bowel and bladder problems are common in MS, but yet many people feel too embarrassed to talk about what they’re experiencing. In this podcast we want to banish those toilet taboos once and for all. Listeners will get an insight into the science behind why bowel and bladder problems occur in multiple sclerosis, personal insights from people living with MS, and a Q&A with MS specialist nurse Noreen Barker on everything from UTIs to constipation.