Breaking it down - A multiple sclerosis podcast
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.
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 [email protected]. 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 [email protected].
Aug 10, 2022
1 hr 34 min
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 [email protected]. 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 [email protected].
Aug 1, 2022
1 hr 15 min
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 [email protected] 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 [email protected].
Jul 14, 2022
1 hr 10 min
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 
Jun 27, 2022
52 min
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/
Jun 7, 2022
1 hr 36 min
What is it like taking part in clinical trials for MS research?
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/
May 16, 2022
54 min
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 [email protected]. It’s available to anyone who wants to know more about MS, not just those currently living with the condition. 
Apr 25, 2022
1 hr 7 min
Meet the MS Trust... MS Trust Information team
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
Apr 11, 2022
36 min
How can I manage living with MS fatigue?
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
Mar 21, 2022
37 min
Meet the MS Trust... MS Trust CEO and the Chair of Trustees
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
Feb 28, 2022
1 hr 2 min
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