MS is CHRONIC

This episode is also available as video https://youtu.be/oBmQ8oDKbzI?si=cdaENFuqgxr3G-ew   Intro/Outro Music by Mike Lee   This week 20th - 26th April is MS Awareness Week and that makes this a perfect week to share this latest episode. We are joined by the wonderful Eleanor Bate who works with Shift.MS as a Community Manager. We had a great chat. Eleanor shares her experience with Shift.MS and we talk about how people with MS can benefit from being part of organisations and groups like Shift.MS. MS Awareness Week - #MSThinkAgain Happy listening. Shift.MS has 81% of Shift.ms members said the community improved their emotional wellbeing. https://shift.ms/home "Shift.ms is the social network for people with multiple sclerosis. Founded by MSers, for MSers, the charity supports many thousands of recently diagnosed people across the world as they make sense of MS. It’s independent and it’s free".

Warning to those who are offended easily - there is a fair bit of swearing in this episode.   The latest guest to join the MS Podcast is...........me! The episode is about 20 minutes long as it covers a short time in my life.  Recently we have been getting some work done at home and while going through some boxes I found a journal from 2017, the year I was diagnosed with Relapsing Remitting Multiple Sclerosis. I forgot that I had written it and thought it might be worth sharing with those of you who listen to this podcast whether you have MS or know someone who does. It starts in January 2017 and covers the last couple of months before my diagnosis in March and continues until a couple of months after.   Warning to those who are offended easily - there is a fair bit of swearing in this episode.   I hope you enjoy. Happy Listening.

Welcome to MS is Chronic.  Now into Season 3 and another fabulous guest. Trishna Bharadia MFPM(hon) Multi Award-Winning Patient Leader and Patient Engagement Professional. Trishna will be familiar to many people in the MS community. Diagnosed with RRMS in 2008 Trishna very quickly became an MS Adovocate and Patient Leader in the MS Community and Asian MS. (From MS Society website) Asian MS Asian MS is a national support group that offers tailored and culturally-sensitive services for Asian people with MS, their carers, friends and family. It's aimed at people whose heritage originates from South Asia. We aim to: raise awareness and dispel ignorance of MS in the Asian community bring people within the Asian MS community together through various channels and means raise money for services to help people affected by MS from the Asian community represent the views and support needs of Asians affected by MS within the MS Society and wider MS community which is part of https://www.mssociety.org.uk/  Asian MS offers: information and education webinars literature on MS in English literature on MS in Asian languages guidance and support for living a healthy lifestyle with MS, contextualised for the Asian community Support and connection to the MS community: virtual chai and chat meet ups social media community telephone support newsletter Find Asian MS on Facebook Find Asian MS on Instagram Find Asian MS on LinkedIn   Trishna includes, public speaking, campaigning, peer review publications and media work in the work she does across the MS community.  A highlight for Trishna was being part of the 2015 Peoples Strictly For Comic Relief. Trishna was nominated by her sisters and it led to an amazing experience for Trishna. It also gave Multiple Sclerosis the highest profile so far on telly. Leading to connections and wider awareness. Millions of viewers across the world tuning in. The links below are to Trishna's website - please do take the time to have a look.   https://www.trishnabharadia.co.uk/  This is a great listen and I am sure you will enjoy what Trishna has to say. As always, likes, shares, comments and follows help others hear MS is Chronic episodes. Happy Listening, All the best, Barney Black Produced by Barney Black Music by Mike Lee  A Fae The Scheme Production    

Thank-you for dropping in to this latest episode of MS is Chronic. Season 3: episode 1 https://open.spotify.com/show/5LVRa7QkIUIgnoU2nVTmpb?si=69540d7b470a462e First a request from me to you 😊 Please like, share, comment and follow MSisChronic podcast and help these episodes reach the widest audience possible. Thank-you. A couple of weeks ago I had the pleasure of getting to know the wonderful Ben Parker aka The Wheelie King. When I heard about Ben’s challenge to wheel himself from the South East of England (Lowestoft) to South West of England (Lands End) I was super keen to have him share his story. What a fabulous it is. Many topics get covered in this episode in addition to the epic challenge Ben will undertake in July. Ben’s childhood, his time as a bus driver where he began to experience his first Multiple Sclerosis symptoms. His journey to becoming an inspiring maths teacher and loads more. Throughout the episode Ben tells of a few people that have influenced his life and been a positive impact: His other half Louise. His art teacher and head of year Mrs. Oliver from secondary school. Childrens author and comedian James Campbell (he has a show at this years Edinburgh Fringe) https://www.jamescampbellauthor.com/home  Paralympics GB Wheelchair racer Richard Chiassaro https://www.richardchiassaro.com/  Ben is raising money and awareness for two organisations. Click on the links to find out more and you can donate to Bens Just Giving Page here. Help him smash his target for two great causes! https://www.justgiving.com/team/wheelieking?utm_medium=TE&utm_source=CL  Andys Man Club  https://andysmanclub.co.uk/about/origin-story/  No Child Without (Harlow) https://www.nochildwithout.co.uk/  Believe it or not we do talk about Multiple Sclerosis, Tysabri, Secondary Progressive Multiple Sclerosis, MRI scans and stuff like that. Ben can be followed here: X @Wheelieking2025 Instagram https://www.instagram.com/wheelieking2025/# Tik Tok https://www.tiktok.com/@wheelieking2025 With each episode I ask my guests to nominate a song for the accompanying playlist to this podcast MuSic is Chronic – Ben picks a couple of belters... https://open.spotify.com/playlist/1dkwko354172LXNic352QF?si=24495a9d45a54d1f I loved doing this episode and I believe you’ll enjoy it too. Enjoy. B A Fae The Scheme Production Produced by Barney Black Music by Mike Lee

Thank-you for choosing to listen to the latest episode of MS is Chronic. This is season 2 episode 6. With a fabulous guest Bev Malcolm. I met Bev through the MS Society Perth and Kinross group. And we have been trying to get together for a while to record this episode. When we met to record Bev was still recovering from a broken hip. In addition to dealing with her MS. And I am very grateful to her for the time she gave. You'll hear her story as a girl from Blackpool that moved to Bournemouth and ended up in the Fair City of Perth. Bev introduced me to the Scottish Ballet’s dance programme, SB Elevate® and shared that she is a member of local choir as well as a key member of the MS Societ Perth and Kinross group too. A very inspiring lady. Enjoy the episode and if you would like to take part or know someone who would like to take part that would be fabulous. Just let me know. Happy Listening.   The intro and outro Music in this episode is by Perth musician Mike Lee. This is a 'Fae The Scheme' production   https://scottishballet.co.uk/move-with-us/dance-classes/sb-elevate/  Which aims to support the physical, mental and social wellbeing of people living with Multiple Sclerosis (MS). This programme, which is the first of its kind in the UK, was developed in partnership with MS specialists, University of Florida, Georgetown University, MS Society Scotland and MS Revive. SB Elevate® has been made possible by the generous support of Baillie Gifford (Scottish Ballet’s Neurological Dance Health partner), our trusts, foundations, and patrons". MS Society Perth and Kinross Group  https://www.facebook.com/profile.php?id=100076069987270&__tn__=%2Cd 

Welcome to the latest episode of MS is Chronic. I have had the great pleasure of being joined by TheMSGuide - Dominic Shadbolt.  Dominic has been prolific in the MS Community for many years. Diagnosed 33 years ago and has many strings to his bow. His achievements include securing the right for all people with MS in the UK to access a Disabled Persons Railcard, leading a global project for a leading MS charity during the pandemic, and completing a remarkable four-day, 100-mile, self-supported fundraising hike along the South Downs Way. Now Dominic is in training to cycle 8000km coast to coast across Canada - starting on the 1st of May. Below are the links to Dominic's social pages and Ride Canada 4 MS https://www.rc4ms.org/  Special thanks to friend of the show Karen Ablett for connecting Dominic and I. https://www.tiktok.com/@mrssparkle2019 Karen Ablett Tiktok  https://www.tiktok.com/@mrssparkle2019 Adrian Boster https://www.youtube.com/@AaronBosterMD/featured Tripping On Air Ardra Shepherd https://trippingonair.com/ Shift MS https://shift.ms/ MS Society www.mssociety.org.uk    Disabled Persons Railcard https://www.disabledpersons-railcard.co.uk/are-you-eligible/ https://www.instagram.com/themsguide https://www.tiktok.com/@themsguide_ https://x.com/themsguide https://www.youtube.com/@theMSguide https://www.rc4ms.org/sponsors/  

Welcome to MS is Chronic. In this latest episode you'll get to hear from the wonderful Karen Ablett. Karen's bio describes her as ahappy, chatty, POSITIVE person who loves life and believes ANYTHING IS POSSIBLE if you put your mind to it! :) #mswarrior I'm going to add 'authentic'. Spending time with Karen was a real joy. To hear how she faces into each day and looks for the best in what she deals with. As usual our chat covers Multiple Sclerosis and the journey Karen has been on. We shared stories of the MS influencers that have crossed out path and other sources of information we find when wanting to know more about this crappy condition we have in common. I constantly learn new things about myself when speaking with people like Karen and I'm pretty sure you'll find yourself pondering for a moment or two as you listen to this episode.   If you would like to be a future guest please get in touch. Your story deserves to be heard. Thanks for listening Barney

Welcome to MS is Chronic. This episodes guest is the wonderful Matt Lloyd. The best way to describe Matt is that he has too many strings for one bow. Born with spina bifida, paralympian, Olympic torch bearer, entrepreneur, music journalist, PHD in Systems Science, Global MBA Online Tutor University of Hull, diagnosed with MS in 2017. That's just for starters. Matt is really generous with his time and honesty. He shares his story and his strategy's for life. Being born with Spina Bifida and then getting an MS diagnosis in his 40's, Matt's life experience up to that point means he approached things with a different perspective. The chat veers off when we start to talk about music and gigs, a passion for both of us, and once a part of Matt's career as a music journalist. Which is what this podcast is really about.  We connected because of MS, but we found we've much more interesting things in common.  Happy listening, Enjoy. Barney   Spina bifida is a type of neural tube defect. The neural tube is the structure that eventually develops into the baby's brain and spinal cord. The neural tube starts to form in early pregnancy and closes about 4 weeks after conception. In spina bifida, part of the neural tube does not develop or close properly, leading to defects in the spinal cord and bones of the spine (vertebrae). It's not known what causes spina bifida (NHS website)   Multiple sclerosis (MS) is a condition that affects nerves in your central nervous system. That's your brain and spinal cord. In MS, the coating (myelin) that protects your nerves there is damaged. This causes a range of symptoms like blurred vision and problems with how we move, think and feel (MS Society UK)   https://online.hull.ac.uk/global-mba/academic-team/matt-lloyd https://systemssoundbites.com/about  https://www.mssociety.org.uk/about-ms/what-is-ms https://shift.ms/about-us     

Hello and welcome to MS is Chronic. In this latest episode I was joined by the fabulous Claire Cameron who shares her personal and professional story. This is a great listen and like me I'm sure you'll learn a few things about living with a family member who has multiple sclerosis as Claire did. And also what it is like being part of a team running a successful Community Centre a fairly remote part of West Scotland. Claire is the Long Term Conditions Outreach and Community Awareness at The Snowdrop Centre in Mid Argyll. The Snowdrop / Multiple Sclerosis Centre, Mid Argyll is situated in Lochgilphead on the West Coast of Scotland, with outreach support extending over the larger areas of Mid Argyll, Kintyre, Islay and Jura https://www.msargyll.com/ Their mission is to support people affected by neurological and other long term conditions, as well as anyone feeling socially isolated. providing access to: A wide range of complementary therapies, physiotherapy and talking therapies, Condition self management workshops,supportive listening and peer support, Accessible exercise classes, Community food projects, Music and craft activities, Centre outings Support with welfare forms, signposting to relevant support organisations Campaigning, awareness raising, speaking out and being the voice for those not being heard. 

Welcome to MS is Chronic. Multiple sclerosis (MS) is a condition that affects nerves in your central nervous system. That's your brain and spinal cord. In MS, the coating (myelin) that protects your nerves there is damaged. This causes a range of symptoms like blurred vision and problems with how we move, think and feel. (MS Society) In this episode you will hear from Brian Loefell who lives in the USA. . We cover loads in this episode including the US and UK health systems, a bit of politics and Brian's journey from being diagnosed in 2017 through to his various MS Activism since then. Thanks for listening Barney.  

Hi there, I'm Barney Black and I was diagnosed with Relapsing Remitting Multiple Sclerosis in 2017. Since then I have shared some of my story on Youtube UC-3c5PTy1a5QYwiLEBvNdhQ  Now it's time for other voices to be heard which is the motivation behind this podcast. A little bit of science: The estimates suggest that over 130,000 people in the UK live with MS and that number is rising. There is no cure but there are over a dozen treatments available on the NHS for replapsing remitting MS. Nothing yet for Progressive MS. There are many support groups across the UK and at local levels which I have found to be useful. The people I have found of most value are those with the condition. Because they just get it. They know and understand when you describe the MS Hug is more like being crushed or similar to a heart attack. That fatigue isn't just being tired, it's like running a battery on 15% expecting 100% performance. And that's just before getting out of bed. They also understand it's such a variable disease and that our common ground is that we have MS. But that we all have our own flavour of MS. In these 6 episodes you will hear optimism, fear, hope, stoicism and ambitions for the future. What I know you will hear is the authenticity in each person's story. Thanks for listening, Barney  

This seems like a fortuitous and appropriate way to end Season 1. I met Kris Mackie a couple of months ago at the Perth and Kinross Coffee evening  https://www.facebook.com/profile.php?id=100076069987270  We got chatting and he kindly agreed to be a guest on the podcast. Kris has only been on his own MS journey since last year. Meaning everything he is going through is very current. From the symptoms he began to experience, how it has impacted his and his family lifestyle and how he has used it to be an MS advocate and support his local community. https://msgroups.enthuse.com/pf/3munros3months?fbclid=IwY2xjawEaC15leHRuA2FlbQIxMQABHQnQv11TLknyCD2DbCxpY2NAVwlxDz8z7eTjOUC5CaoXavxQ1vmwqnAN2Q_aem__owBPP_nx9xjGPoNlMiazA&sfnsn=scwspwa 

I was lucky to have a cup of tea with Mavis while I was holidaying on the Isle of Islay, off the West Coast of Scotland.  Mavis shares what it is like to be in a lovely but remote part of the world when it comes to needing specialist support like a neurologist or MS Nurse. Also a shout out to the  The Snowdrop / Multiple Sclerosis Centre, in Lochgilphead on the West Coast of Scotland, with outreach support extending over the larger areas of Mid Argyll, Kintyre, Islay and Jura.   Whose mission is to support people affected by neurological and other long term conditions, as well as anyone feeling socially isolated. https://www.msargyll.com/

https://youtu.be/gknn1QmdHCY?si=E6i2Fmh1eRtvWpzH Dean Riley is an inspiration. In this episode you'll hear how he takes life head on. With his humour and ability to try something new and always wanting to stretch himself. Refusing to have limits put upon him because he has Multiple Sclerosis.  We laugh and we even shed a tear in this episode. Follow the the link in these notes to Dean's "Letter to MS"youtube page. But, first, listen to this episode and be inspired.  

https://www.vam.ac.uk/dundee/whatson/events/multiple-exposures Graeme is an award winning architect and Professor at Dundee school of art. He has exhibited at Dundee V & A and is about to publish his first book of photography. his school pal Alan Cumming has done the foreward. Graeme was diagnosed with MS 30 odd years ago.  In this episode he shares his journey from 1990's to the present day. 

I first 'met' Damian through his Youtube channel as he shared his own MS journey. He's engaging, funny and perhaps most importantly he is authentic His Youtube channel http://www.youtube.com/@NoStressMS His website: https://www.damianwashington.com/  His bio says he's an 'Actor, Rapper and a Nerd' To me though, he is a rich gift in this sh!tty world of Multiple Sclerosis

I first met Heather last year. At least that's the first I remember. My sister Mona and Heather are old school friends. Heather very kindly agreed to support me in getting this series of podcasts started and she is a brilliant first guest. The language is a little fruity at times, so if you are of a sensitive nature, you might want to skip this episode. But you'd be missing out on a brilliantly funny and honest chat of what it is like to live with MS. Happy Listening