Ms Trust

Send us a message about the podcast. For questions about MS please contact our helpline 0800 032 38 39Our 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 h

Send us a message about the podcast. For questions about MS please contact our helpline 0800 032 38 39As 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

Send us a message about the podcast. For questions about MS please contact our helpline 0800 032 38 39Today 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 upsettin

Send us a message about the podcast. For questions about MS please contact our helpline 0800 032 38 39Most 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 notes- 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-finance

Send us a message about the podcast. For questions about MS please contact our helpline 0800 032 38 39Multiple 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

Send us a message about the podcast. For questions about MS please contact our helpline 0800 032 38 39MS 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/

Send us a message about the podcast. For questions about MS please contact our helpline 0800 032 38 39Our 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

Send us a message about the podcast. For questions about MS please contact our helpline 0800 032 38 39Fatigue 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: mstrus

Send us a message about the podcast. For questions about MS please contact our helpline 0800 032 38 3928 February 2022Will 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

Send us a message about the podcast. For questions about MS please contact our helpline 0800 032 38 39Menopause 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

Send us a message about the podcast. For questions about MS please contact our helpline 0800 032 38 39To 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 

Send us a message about the podcast. For questions about MS please contact our helpline 0800 032 38 39In 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/

Send us a message about the podcast. For questions about MS please contact our helpline 0800 032 38 39For 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

Send us a message about the podcast. For questions about MS please contact our helpline 0800 032 38 39We 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 -

Send us a message about the podcast. For questions about MS please contact our helpline 0800 032 38 39Guest 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-pharmacistsMS 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

Send us a message about the podcast. For questions about MS please contact our helpline 0800 032 38 39In 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-sclerosisMS Trust page on who gets MS and why?: mstrust.org.uk/news/views-and-comments/who-gets-ms-and-why

Send us a message about the podcast. For questions about MS please contact our helpline 0800 032 38 39In 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/exerciseMS Trust Pilates videos with Neurophysiotherapist Joanne Pritchard : https://mstrust.org.uk/life-ms/exercise/move-it-ms-pilates-jo-pritchardView Emily's blog: https://thewibblydinosaur.com/ View Nick's Instagram profi

Send us a message about the podcast. For questions about MS please contact our helpline 0800 032 38 39In 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=5

Send us a message about the podcast. For questions about MS please contact our helpline 0800 032 38 39In 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/

Send us a message about the podcast. For questions about MS please contact our helpline 0800 032 38 39In 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