Ms Trust

28 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

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-sc

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-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

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-sclerosisMS 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/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 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.