MS is CHRONIC

Season 2 - Episode 6: Bev Malcolm: "Just a lassie from Lancashire"

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 

Season 2 - Episode 5: The MS Guide aka Dominic Shadbolt

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/
 

Season 2 - Episode 4: Karen Ablett

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

Season 2 - Episode 3: Matt Lloyd (Paralympian)

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 
 
 

Season 2 - Episode 2: Claire Cameron

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 outingsSupport with welfare forms, signposting to relevant support organisationsCampaigning, awareness raising, speaking out and being the voice for those not being heard. 

Season 2 - Episode 1: Brian Loeffel

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.
 

MS is Chronic Introduction

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
 

Season 1 - Episode 6: Kris Mackie

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 

Season 1 - Episode 5: Mavis Mctaggart

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/

Season 1 - Episode 4: Dean Riley

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.