S7E12 Overcoming MS programs, courses and Living Well Live with Jake Connor

Jake Connor  00:00

You know, people come from all over the world. Some walk into the room having never met anybody with MS before. And then by the end, they built this sort of sense of connection and community with each other. And then they want to get involved more with the charity, you know, and they might want to volunteer, or they might want to use their skills to become a program facilitator themselves. So it’s, yeah, it’s a real highlight in our calendar.

 

Overcoming MS  00:24

Welcome to Living Well with Ms. This show comes to you from Overcoming MS, the world’s leading multiple sclerosis healthy lifestyle charity, which helps people live a full and healthy life through the Overcoming MS program. We interview a range of experts and people with multiple sclerosis. Please remember all opinions expressed are their own. Help others discover living well with MS. If you enjoy the show, please rate and review us wherever you listen to podcasts. And now let’s meet our guest.

 

Geoff Allix  00:59

Welcome to the latest edition of the Living Well with MS podcast. Joining me on this special edition is Jake Connor. Jake is a service delivery manager at Overcoming MS, and so we have a bit of an unusual guest, someone from the actual organization joining us. So to start off with, could you introduce yourself and your work at Overcoming MS?

 

Jake Connor  01:20

 I’m Jake Connor, and I live in Manchester, in the UK, and I’ve been working with the Overcoming MS charity since about March 2022. I’ve held a few roles within what’s now called the Programs team, and so when I joined it was known as the community engagement team, which was sort of largely born out of the pandemic when the charity recognized the importance of having dedicated roles and support for the global community. So I started as the community engagement administrator. So I worked closely with all of our volunteer ambassadors and the Circle groups that they lead, and that really gave me a good introduction to who the community is, and it gave me the chance to, you know, connect directly with the people that we support and who support the charity. And since then, I’ve transitioned into more project focused roles. So I became a project officer working on both in person and digital events, and then I completed a project management qualification, so I moved into my current role as Service Delivery Manager, and over the last sort of year or so, I’ve been leading on a few of our different support services that the charity offers, like webinars, retreats, pathway to Overcoming MS and Living Well Live. So yeah, there’s a lot that we offer that people might not be aware of so, yeah, really looking forward to being able to share more about that in today’s podcast.

 

Geoff Allix  02:45

So you don’t have MS yourself, but what’s your personal connection to multiple sclerosis?

 

Jake Connor  02:51

Yeah, that’s right. So I don’t live with MS myself, but I’m a secondary carer for my mum, who was diagnosed with MS in 2021 so right in the middle of the pandemic, and it was a really scary time. I’m sure everyone listening can probably relate to sort of how overwhelming it can be. And at that time, hospitals were sort of incredibly busy, and, you know, visitors weren’t allowed appointments because of COVID. So essentially, one morning, she woke up with drop foot, saw her GP, and they immediately sent her to hospital because they thought it might have been a stroke, which obviously that was when, you know, alarm bells started ringing. So she stayed in hospital for a few days whilst they ran some tests, so like an MRI and a lumbar puncture, and that’s when she was diagnosed with relapsing remitting MS. So, yeah, really seeing how a diagnosis like that can impact someone and their daily life from, you know, small adjustments to major challenges it gave me a personal understanding of MS beyond just the medical side. And it’s sort of that personal connection and understanding that really drives my work at Overcoming MS, because I know just how valuable support community and sort of practical guidance are, you know, not just for that person living with MS, but for their family and sort of everyone around them.

 

Geoff Allix  04:09

And you must be a great font of MS knowledge for your mum.

 

Jake Connor  04:13

I try to be. I don’t like to overwhelm her with my knowledge, or, you know what I know about Overcoming MS, so I just give her the information that I know and just sort of let her take that in and use it. You know how she might need it, essentially.

 

Geoff Allix  04:32

So what led you to work Overcoming MS?

 

Jake Connor  04:35

I suppose what led me to work at the charity really goes back to that personal connection through my mum’s diagnosis. So before joining the charity, I actually worked in insurance, which now feels like such a different time of life. It was probably more of a stop gap after university, but when my mum was diagnosed, I wanted to try and do something to help so to help her and obviously other people. And at that point I hadn’t actually heard about Overcoming MS yet, so I started volunteering with the MS Society on their befriender service, and I also did a fundraising challenge with a group of friends, which was really fun. And then after that, going back to insurance, it just wasn’t fulfilling for me anymore, although I don’t think it ever was, to be honest, I knew I wanted to do something more meaningful. So one day, I just happened to come across a job advert for a role with Overcoming MS in the community engagement team. So I thought, you know, why not? Let’s give it a go, see what happens. And obviously, I had my volunteering experience. I had my personal connection to MS from my mum, so I applied, and yeah, here I am, just over three years later, working with an amazing team and supporting a global community. So it’s been a really rewarding experience so far, working for the charity.

 

Geoff Allix  05:49

And why Overcoming MS and not other MS charities? What do you think it offers?

 

Jake Connor  05:55

I think for me personally, what really drew me to Overcoming MS, and still does, is the focus on what people can do rather than what they can’t. So I love how much the charity aims to, sort of, you know, inspire and empower people, although those words might sound a bit cheesy to other people, but genuinely, it’s about supporting people to take control of their health through these positive, healthy lifestyle changes, which I think is really important, and I think it’s becoming a bit more mainstream now. But I also really like how it’s not just about what to do, you know, like eating well, staying active, it it’s also about why those things matter. So before starting at the charity, I probably wasn’t the sort of person who would sit down and read about, you know, why staying active and eating well is important. I just thought, you know, it makes sense. Everyone knows that surely. But the evidence and the research behind these pillars of the Overcoming MS program is actually really interested, and it’s all there, and it all makes sense. I think one of the favorite, my favorite parts about the program is to change your life for life aspects, you know, the behavior, change, the mindset, the setting goals. Yeah, it just makes sense, I think, whether you live with MS or not, and I think, plus, the team is made up of people who really care and want to support the community. As as you probably know, we are a small team of around 15 people, but we deliver so much, and we actually do want to make a difference, which isn’t something I’ve been a part of in my previous life in insurance. So I think it is, and continues to be, a great charity to be a part of, and a great community to be supporting.

 

Geoff Allix  07:30

And you mentioned a little bit about services. So what services do you offer Overcoming MS? And how can people get involved with Overcoming MS?

 

Jake Connor  07:39

So I’ll try and keep this as simple as I can, as I know we’re going to be sort of diving deeper into the specific services, but Overcoming MS, we we offer a wide range of evidence, informed support services. So what I mean by that is that what we’re offering is grounded in the evidence and the research about what helps people with MS to live well. So we combine that with real world, lived experience of people living with MS and their insights. So it’s both informed and genuinely practical. You know, these services we offer are rooted in the healthy lifestyle changes based on the program, and they’re designed to meet people sort of wherever they are on their journey. So for example, if somebody’s at the very start of their journey, we’ve recently launched a new service called Discover Overcoming MS. So these are live streamed sessions hosted on our Live Well Hub every other month, and they offer a more light touch introduction to Overcoming MS as a charity and as a program. And these are completely free to attend. All you need to have is an account on the Live Well Hub, which, again, is completely free. If you’re the sort of person who might want to go a little bit deeper, we run our Living Well with MS webinar series, which is now in its sixth season. These happen every couple of months, and they cover, I would say that the key areas of healthy lifestyle. So diet, physical activity, stress management, and our webinars and the majority of our services include our brilliant program facilitators and those training to be so we have doctors, nutritionists, health coaches, the majority of who live with MS themselves, they have that expertise and that lived experience, which hopefully makes the content relatable and impactful. So these are again free to attend with a small voluntary donation. Ask when people register, if they’re able to do so. In terms of the Live Well Hub, I mentioned that before, if you’re not on there, I would definitely recommend it. It’s our online community platform and app, and it’s a place where people with MS from all over the world can connect share stories, ask questions, and it’s where we host our Circle support groups, which are, if you’re not aware, it’s our community led groups offering peer, connection and encouragement from people in the local area, if you want more structured learning, we have our award winning Pathway to Overcoming MS course, which is a weekly online course designed especially for people who are newly diagnosed or maybe those who want a refresher of sort of their understanding of the Overcoming MS program and healthy lifestyle changes. It’s live group sessions each week with our program facilitators, and you can ask questions, build a community of people who are on a very similar path to you. And again, this is a completely free service.

 

Geoff Allix  10:33

Could you go into a little bit more depth of each of those just to sort of break them up? So you mentioned the Pathway course. So is there anything more to add about the pathway course, and what impact does that have on participants who attend?

 

Jake Connor  10:47

Yeah, I suppose. I mean in terms of the Pathway course, I think what makes it unique is that it’s co designed with the participants. So each week, you submit and send in questions ahead of time, and the sessions are sort of shaped around what people want to know. So as I said, we have our program facilitators who have their professional experience and their lived experience of MS, and they will answer the questions using their own insights and stories. And because it’s a group environment, everyone will then chip in and sort of share their experiences. So it’s full of peer support and learning too. I mean in terms of impact, the feedback is always incredibly positive. Many of our participants on Pathways say that it gives them a safe space to ask the kinds of questions that they might not always have time to raise with their own healthcare team. And we follow these people who have been on our courses for six to 12 months after just to sort of see how they’re getting on. And the results, again, are always so positive to see. I mean, I was just in preparation for this podcast. I was having a look at some of our stats and some of our feedback, and from the most recent pathway course, we saw a 30 to 40% improvement in physical and mental well being, which I think are huge numbers, you know, considering it is only an eight week course.

 

Geoff Allix  12:07

With those sort of numbers, if that was a drug trial that people would be shouting about it, wouldn’t they?

 

Jake Connor  12:11

Exactly, and I think what’s really great to see is that it has this huge impact on the participants, but it’s also recognized by professionals in the wider health community. In 2023 we were recognized by the BSLM, so the British Society of Lifestyle Medicine, and which is a huge endorsement from a respected organization like the BSLM. And, you know, we’ve been featured in the British Journal of Neuroscience Nursing for Pathways. So, you know, it’s a really, really brilliant course with huge impact. So if anyone is listening and you want to register, you can do that on our website. I think the next one is in September 2025, in a UK time zone. You can pre register your interest now if you want to join that sort of course.

 

Geoff Allix  13:01

So the original courses, if you like, were residential retreats. They’ve been going back for many, many years, so they still go on. So tell us a bit more about the residential retreats. And again, what impact would they have on participants?

 

Jake Connor  13:13

I mean, the retreats are honestly one of our biggest highlights in the Overcoming MS calendar. Yeah, as you said, Geoff, they’ve been going back years and years, but we brought them back after COVID, because there was a pause. We brought them back in 2023 because we had so much demand from the community, and since then, we’ve been running one every year with the most recent one in March. What’s exciting is that we have our new retreat model, which is hybrid. So historically, the retreats were, I think, a full week long. But now we start with around eight weeks of online Zoom sessions. So participants connect with each other, they meet the team and the program facilitators, and then they sort of deep dive into the evidence behind specific lifestyle changes, and it’s a chance for them to ask questions and share experiences, and then, following that, we all come together in person for the residential part of the retreat, which is now around two and a half days. So we start putting the theory into practice with things like yoga, pilates, meditation sessions, you know, breaking down restaurant menus and just having conversations around the emotional impact of living with MS as well. Obviously, as I said earlier, I don’t live with MS myself, so I’m always really grateful to be a part of the retreat, because the transformation you see of people who attend during those first few days is incredible. You know, people come from all over the world. Some walk into the room having never met anybody with MS before, and then by the end, they built this sense of connection and community with each other. And then they want to get involved more with the charity. You know, they might want to volunteer, or they might want to use their skills to become a program facilitator themselves. So it’s, yeah, it’s a real highlight in our calendar.

 

Geoff Allix  15:05

I attended a retreat quite a long time ago, and it is transformative. I mean, they are expensive. There’s no doubt they’re the sort of pinnacle of the things offered, but the actual, in person, part of the emotional side of it, it would be difficult to do any other way, I think. But yeah, it’s, it was amazing experience. And as you said a lot of us end up volunteering. I know that lots of people on retreat with me have subsequently volunteered and and do more stuff with Overcoming MS.

 

Jake Connor  15:32

It’s great to see sort of the journey that people go on following the retreat. I mean, the one that we just had in March, and we welcomed Rabiah Coon, who I know recently appeared on a podcast. I think it was a couple of months ago. So she came on our recent retreat, and I think she mentioned this in her podcast episode. She is a comedian, a professional comedian, and she did some Saturday night entertainment for us, which was amazing. She spoke about her journey of living with MS for over 20 years. You know, she also had a take on the unofficial eighth pillar of the Overcoming MS program, being laughter. It’s just a real highlight to sort of see everybody, sort of relax, laugh, you know, connect, reflect on their own journey as well, and we’d had a particularly emotional session that day. So having people like Rabiah come up and, you know, tell jokes, it really just yeah, it brought everybody in.

 

Geoff Allix  16:29

So getting onto other services tell us a bit about the webinars and what impact they have.

 

Geoff Allix  16:33

So you’ve touched on Live Well Hub, but can you tell us a bit more about the Live Well hub and the Six months to Overcoming MS course.

 

Jake Connor  16:33

We are now in our sixth season, and so our webinars, just like this podcast, are called Living Well with MS, and they’ve been offered by the charity since around 2020, I believe. So they’ve been running for about five years now, and they take place every couple of months and cover a lot of important topics. You know, diet, physical activity, symptom management, mental health. And I mean, one of the great things about these webinars is sort of just how accessible they are. You know, people from all over the world can join live or watch on demand, completely free of charge. They’re expert led, so they feature our program facilitators. But also we’ve welcomed, you know, some incredible speakers like Dr Aaron Boster, Dr Robert Motl from the University of Illinois, Dr Michelle O’Donoghue from Harvard Medical School. And recently we had a webinar with physiotherapist Jody Barber and but I think what really makes these webinars sort of stand out is how interactive they are. So similar to Pathways, the audience can ask questions directly to these experts, you know, questions that they don’t always have time to talk to their own healthcare team about. And, you know, while we can’t provide medical advice, I think just having these questions addressed by professionals offers people a lot of hope and reassurance. And I think there’s always one bit of feedback that sticks in my mind about webinars, and it was somebody who said they’ve got more out of a 90 minute webinar than an appointment with their own neurologist, which is sort of both wonderful, but also a little concerning, because ideally, people would get that sort of support from their own healthcare providers. But just knowing they can connect with experts on our webinars and get practical advice and feel part of the wider community, I think, hopefully makes a difference to them.

 

Jake Connor  18:31

The Live Well Hub, for anybody that doesn’t know, is an online platform, an app that is for the whole community to come together, whether you’re in an Overcoming MS circle or not, it gives people an online virtual space to connect with others living with MS, ask questions, you know, share successes and challenges, and helps people to feel like they belong to a group who understand what they’re going through. But yeah, it’s been running for a couple of years now, and I think there’s around 6,000 members on there, which is huge. It’s completely free to make an account and join, which you can do on our website, or you can just download it straight from your phone’s app store. But there’s so many different areas to explore. You know, we have our Hub Home, we’ve got community questions, and there’s an event space for you to sort of RSVP to events, and like you mentioned, Geoff, it’s the home of our Six Months to Overcoming MS course, which is very similar to Pathways, but it’s a self paced online course, so it basically gives participants the chance to easily explore a specific pillar of the program, month by month, to help people build their confidence and build their knowledge. It’s full of useful videos, guides and support to help people along the way. And there’s also a dedicated private Circle for people on the course to connect with each other. You know, you can speak to people who might be on the same month as you, or maybe they’re just starting out, and you can support them, or there’s people who are ahead of you that can give you advice. So it’s a really great course, I think, for people who may not have the time to join a structured, weekly, online course, and they would like to do it at their own pace, but again, you can, it’s completely free to join, and you just need a Hub account, and it’s just in your side menu. You can you can sign up whenever.

 

Geoff Allix  20:25

And the final point, and I think the big reason you’re really here, is Living Well Live. So what is Living Well Live? And after you’ve told us about it, how do people get tickets for it?

 

Jake Connor  20:36

Yeah, so very exciting. So Living Well Live is our brand new one day event happening on Saturday the 15th of November 2025 so this year, it’s a hybrid event, which was really important for us as a global charity to do, because we obviously support people in the UK and all around the world. So whether you’re joining us in person or joining us online from around the world. You know, everybody can take part. So the in person part of the event will be held at a venue called the Slate in Coventry, which is right in the heart of the UK. So it’s very easy to get to, very accessible. It’s a it’s a beautiful Lakeside venue. And then for those joining online, all of the main stage sessions will be live streamed on Zoom, and the online audience will be able to interact with the speakers and ask questions, just like they would if they were there in person. But overall, it’s going to be a really inspiring day. We’ll have talks from people in the community sharing their stories. We’ll have expert led sessions fromnutritionists, health coaches, and one very exciting, inspirational keynote speaker who I can’t share just yet, but I’ll just leave that there to sort of build some excitement. We’re just waiting for an email to come through to say that we can share that news, but the event itself, you know, attendees can personalize their experience by choosing from different breakout rooms. The sessions will obviously focus around the importance of healthy lifestyle choices. But we’ve got some really great content coming from the event. So, hot topics, panel discussion, the science of sleep and MS practical stress management workshops, building healthy habits. It’s just going to be a really brilliant opportunity for people to come together, to connect, catch up, share experiences and and learn as well. I mean, in terms of logistics, as you said, it’s a ticketed event, but thanks to a generous donation from last year, we’ve been able to subsidize the cost to keep it affordable. And right now, early bird tickets are on sale for just 15 pounds if you want to attend online, or 39 pounds if you want to attend in person, and those will be available until the fourth of July. So that’s our cut off date. And then after that, we’ll have general admission prices, 20 pound online, 55 pound in person, and if you need to bring a personal assistant, you can do we’ve got free companion tickets. And if you’re joining online, you only really need one ticket per family or one ticket per Circle, and you can enjoy it from the comfort of your own home. And there’s also accommodation as well. So if you want to make a weekend out of it, then you can so there’s lots of options there. There’ll be something for everyone. But tickets are on sale now, and they’re selling very quickly, which is great to see. But I would definitely encourage people to sort of grab theirs and don’t miss out.

 

Geoff Allix  23:34

Okay, that sounds brilliant. So it’s a very cost effective way of having an in person event.

 

Jake Connor  23:39

Yeah, I would say, if you’ve always wanted to go on a retreat, but you might not necessarily have the resources to do that, definitely attend Living Well Live. It’s essentially like a mini retreat. You’ll get the same sessions and the similar speakers and similar topics out of Living Well Live, it should be a really great day.

 

Geoff Allix  23:59

Finally, is there anything final you wanted to add?

 

Jake Connor  24:02

Yeah. I mean, I think I’d just like to say if you listen and you want to know more about the services that we offer, or if anything I’ve said that you want to get involved in please, do get in contact. If you need support, whether it’s for our webinars, our retreats, or events like Living Well Live, which we would love to see you at. Don’t hesitate to reach out. You can contact me by email or through the Live Well Hub, I’m always happy to connect and help however I can or signpost you to someone who can help.

 

Geoff Allix  24:33

Okay with that. Thank you very much for joining us. Jake Connor,

 

Jake Connor  24:36

Thanks Geoff, for having me on today. It’s been great to chat.

 

Overcoming MS  24:43

 If you’d like to join us at Living Well Live this November, head to our website to view the agenda and find out more, overcomingms dot org. Don’t forget, get your ticket before 4th July to take advantage of early bird discounts!Thank you for listening to this episode of Living Well with MS. Please check out this episode’s show notes at overcoming ms.org/podcast, you’ll find useful links and bonus information there. Don’t forget to subscribe to the podcast so you never miss an episode, and please rate and review the show to help others find us. This show is made possible by the Overcoming MS community. Our theme music is by Claire and Nev Dean. Our host is Geoff Allix. Our videos are edited by Lorna Greenwood and I’m the producer Regina Beach. Have questions or ideas to share, email us at podcast, at overcoming ms.org, we’d love to hear from you. The Living Well with MS podcast is for private, non commercial use and exists to educate and inspire our community of listeners. We do not offer medical advice. For medical advice, please contact your doctor or other licensed healthcare professional.