Breaking it down - A multiple sclerosis podcast

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. read less

We answer your MS fatigue questions live
16-03-2023
We answer your MS fatigue questions live
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/msplayEpisode 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/msplayMedications discussed-Modafinil (Provigil): mstrust.org.uk/a-z/modafinil-provigil-Modafinil: now restricted to narcolepsywww.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
Cognition and thinking problems in MS
28-11-2022
Cognition and thinking problems in MS
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.
What are disease modifying drugs in MS?
10-08-2022
What are disease modifying drugs in 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-drugsNext 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.
Relationships and MS
01-08-2022
Relationships and MS
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.
Heat sensitivity and Multiple Sclerosis
14-07-2022
Heat sensitivity and Multiple Sclerosis
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.
Talking advance care planning
27-06-2022
Talking advance care planning
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
Working life and MS
07-06-2022
Working life and MS
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 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-finances/legal-advice- MS Trust A-Z Equality 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: 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/
What is Multiple Sclerosis?
25-04-2022
What is Multiple Sclerosis?
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.