MS is CHRONIC
Welcome to MS is Chronic. If you have Multiple Sclerosis, are on a journey that is leading to an MS diagnosis or know someone with MS this podcast is for you. Having MS impacts people emotionally and physically. These episodes are with people living with, the often unpredictability, of MS day to day. Telling their story with honesty, openness, humour and stoicism. Sometimes the language can be a little blue. And the topics covered are from the heart, intimate and very personal. This is not science, medical or health advice. It is regular folk sharing their own experience and from time to time the chat moves from MS into the normal humdrum day to day of life. As the series develops guests will include perspective of family and friends of those with MS. I’ll have professionals share their knowledge insight and advice too. If you’d like to be a guest in future series please get in touch. Thanks, Barney Black
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Episodes
Sunday Aug 18, 2024
Sunday Aug 18, 2024
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
Sunday Aug 18, 2024
Sunday Aug 18, 2024
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
Sunday Aug 18, 2024
Sunday Aug 18, 2024
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/
Sunday Aug 18, 2024
Sunday Aug 18, 2024
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.
Sunday Aug 18, 2024
Sunday Aug 18, 2024
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.
Sunday Aug 18, 2024
Sunday Aug 18, 2024
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
Sunday Aug 18, 2024
Sunday Aug 18, 2024
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