S1E14 Andy McKenna is Stoked on MS

Geoff Allix   

Support for the Living Well with MS podcast is provided by Overcoming MS. A global charity registered in the United States, United Kingdom and Australia, whose mission is to educate, support and empower people with MS in evidence based lifestyle and medication choices that can improve their health outcomes. Please visit our website at www.overcomingms.org to learn more about our work and hear directly from people around the world, about the positive impact Overcoming MS has made on their lives. Now on to today’s episode. Andy McKenna is a dedicated mountain biker and has been since the mid 80s, spending his life pouring over maps, dreaming and exploring the mountains of Scotland and beyond. Turning his passion for two wheeled adventure into a multi-award winning mountain bike guiding and tour business in 2008 and he’s an experienced mountain bike guide and a reluctant administrator, who along with his wife Aneela balance their busy working lives for making sure they both take their medicine regularly by getting out of the office and into the hills on their bikes together as often as possible. Andy’s been living with MS without use of pharmaceutical MS medication since 2007 and is the driving force behind Stoked on MS; irony intentional and through this hopes to shine a light of hope on the reality of leading a healthy, productive and active life by adopting the Overcoming MS way of life. So Andy, can you tell us a little bit about yourself, where you’re from and what you do? 

 
 

Andy McKenna   

Okay. I’m Andy McKenna and I am 50 and I’m probably, apart from having a bit of a dose of the flu at this moment in time, I’m probably living the best life for almost 50. I’m glad my wife’s not in the office right now, she’d be shaking her head and laughing at me but I am originally from Glasgow, I met my wife Aneela at the University of Glasgow 25 years ago. We celebrated our 18th anniversary very recently, wedding anniversary very recently. We both own and run our mountain bike tour operation business called Go-Where Scotland, we’re based in the beautiful Scottish Borders, near the Tweed Valley. We along with an amazing team of professional guides, run tours and experiences, mountain bike tours and experiences, gravel adventure bike and bike packing and tours throughout the whole of Scotland and we have done since 2008, Ironically, one year after the diagnosis I set this business up. 

 
 

Geoff Allix   

So were you an avid mountain biker before you found out that you had MS? 

 
 

Andy McKenna   

Yeah, I swear mountain biking pretty much saved my life to be honest, because I was a really atrocious, clumsy BMXer as a child and I used to run about with guys that could pull all the stunts beautifully. I copied them and usually took a journey into accident and emergency, that was a pretty regular occurrence for me it was getting my head stitched up. So when I was 15/16 i was on a long several-months holiday in Canada and Toronto and I saw these bikes, these mountain bikes for the first time, I hadn’t actually even heard of them in the UK yet and I saw these city couriers in Toronto running about on mountain bikes and I thought this looks like it’s got my name written all over it, and that was really the start of it for me. Yeah, I spent all the money that I’d earnt from my holiday money and money i’d earned on the trip, I bought my first mountain bike to my mother’s consternation because she had to arrive at the airport and pay the customs duty on it and that was kind of the start of it kept me out of hospital because I didn’t have to do all these crazy stunts. It was what really ignited my passion for exploring, I didn’t drive a car at that time, the mountain bike was an incredible way to just get out further and further and further and it’s never left me. 

 
 

Geoff Allix   

And so how did your MS diagnosis change that? Did it affect your mountain biking? 

 
 

Andy McKenna   

The MS diagnosis was probably something that I denied to myself and others, I pretty much plundered on as though it was a mistake, I continued to not just ride my mountain bike, but at that time, I was still leading, I was still guiding. And a bit of a debate between Aneela and myself, I say, for about five years after diagnosis, she thinks it was more like seven, that I was in denial, but the reality was that there were changes taking place, physical changes, my capability on my bike, I was aware of issues with balance and grip and also, because we were in a kind of denial mode, that this was really happening to me, I was bugging every specialist there was, whether it was dentists and the mercury in my fillings, whether it was second opinions and Lymes test for Lyme disease, I guess all the things that most folk when they get a diagnosis like MS and they’re not willing to accept or acknowledge it, you look for all the alternatives and whilst we were in this kind of denial phase, we kept the existence of this diagnosis the MS, we kept it very close to our chests, very few people knew. But the more the symptoms started to interfere with life and the more we became aware of the impact of stress and anxiety on the symptoms, I think that was after a lot of research, I stumbled on the Swank Diet, and realised that stress was a big factor. We at that point, not only started to re-work our business and the mountain bike side of things, but we also decided that it was time to just let the world know that this was our reality. I think we realised that the pressure, we built up pressure upon our shoulders to maintain this semi facade of a normal life and I was often having to cancel social events or ride outs with friends because of, you know, physical symptoms that were going on. We decided, you know what, I think there’s nothing that we should be hiding from here, the world can’t you know, take hearing this reality, I suppose there was a concern because the business was so associated with me personally and my reputation as a mountain bike guide and I suppose my personality, there was a fear that by letting this out the bag, that it would impact on the business detrimentally, that people would you know, if he’s sick the business is sick. It was a huge step  and actually one of the biggest, most positive steps we’ve ever taken, is to just be open and honest about the good, bad and ugly. It’s forced us and is forcing us continually to improve the business, the way the business runs. I’m the underpaid spreadsheet pusher in the background now, I do a lot of organising, but we’ve an amazing team of guides that look after the front end of the business. I think because of this reality, you know, I’m still very much in the mix, I’m a very much part of the team, but the reality is that all of our guides have become very, very close friends as well, because they know they’re not working for a normal company. They’re working with us, Aneela and me and this MS and how it means that some days I’m 10 out of 10 brain’s working and body’s working and some days, that’s not the case and the reality of it has meant that we’ve become a very close-knit team and the reality of this situation has been that we have much deeper relationships across our entire life, friendships, our own marriage,  we’ve had to have some very honest conversations and I think MS it’s all the cliches, but it’s definitely made life much more real and honest and really wringing as much pleasure out of every aspect of it. 

 
 

Geoff Allix   

But can you still get out on the bike though? Are you still active? 

 
 

Andy McKenna   

Yeah. I mean, I, as I say, I was on the bike two days ago, I try and ride daily or every second day, at this moment in time, I thought I’d got over the flu and I was probably a bit premature, and I’ve probably set myself back a little bit, because I’m really feeling it. But also when I’m not riding the bike regularly, I feel stiff, I can feel things stiffening up and contracting not just the physicality of riding a bike is important to me, that’s hugely important. But even though I can’t necessarily push as hard all the time, just being outside and even just turning the pedals and just stopping and soaking up the sounds and the smells. We live in a beautiful part of the world we’re literally, I open the door, and within two or three minutes, and then the countryside on my bike. I mean, that’s why we live where we are, we’re very, very fortunate and it might not be the prettiest thing all the time seeing me meandering around the forest, I have my wobbly days but I don’t let that stop me. I acknowledge that, you know, it might look a little bit alarming for some folk because I may have my tremors.  I’m a bit more honest with myself, I know what triggers symptoms, I recognise that the adrenaline of mountain biking is a trigger as well, so I try and ride safe and within my limits because I want to enjoy the time that I have out and about, I don’t want to come back frustrated and tense because I couldn’t do or I couldn’t achieve. So I think if I listen to an awful lot of the advice that I was given in the early days, I probably probably wouldn’t be exercising the way I am. 

 
 

Geoff Allix   

I personally find if I stop if I don’t do anything, then the drop off is much faster than it used to be before MS and I don’t know if that’s a recognised thing or not, but certainly I notice my fitness drops faster than it used to. Before I was into rock climbing things and if I had a few weeks off, it didn’t really make much difference but now I would notice it much quicker If I don’t do anything, 

 
 

Andy McKenna   

I recognise that, because for me any kind of spike in core temperature really flares my symptoms so I’m probably not testing my fitness as such, I don’t go out there and go hard at it all the time for six, eight, ten hours the way I used to. Because for me everything’s about managing the core temperature and the rise and fall of the core temperature, so in my mind, I almost, you know, imagine the route I’m going and know how, right this long shallow gradiant gives me enough time to slowly, incremently build my temperature, which means that my vision, my balance, my grip won’t be as badly affected. Whereas if I’m riding somewhere that I don’t know, and I’m straight into spike climb, and maybe the ambient temperature, for instance, summer, even in Scotland believe it or not, we have like, 30 degree days up here. Nobody can believe this, but we actually had we had foreign visitors that were absolutely disappointed, they were expecting to get the rain and storms. For our American listeners, what’s that? That’s, that’s well up into the 80s isnt it? It was, it was well beyond my own optimum operating temperature, I found that I sort of work best around 18/19 degrees and a friend of mine, Alan McKenzie, he taught me, he has MS and he was in fact, the first other human being I met with MS because I haven’t sought out organisations or people with MS historically. You know, for several years, I was in denial my wife tried to connect with various forums and groups and meetups just because she needed some support and needed to know what this could, you know, pan out like and she met Alan, and Alan is a good friend. He told me what he does in the summer, he goes to Costco; Cash and Carry and stands outside the industrial fridge freezers, when the summer is roasting hot and he needs to cool down and he’s working anywhere near anywhere he can go and chill down and i’m the same. In summer this year it was roasting in Scotland, believe it or not, and I used to spend and maybe just go down for a bag of coffee in the supermarket but I would spend 20 minutes in the cold aisles just staying cool and it’s like a light switch. You know the difference between hot and cold for me is like a light switch and so I guess just getting to know what works in terms of physical activity for me, the mountain bike and the past few months I’ve been, I don’t know if you’re aware of gravel bikes? My first ever experience of a drop handlebar bike is this I’ve got this Santa Cruz Stigmata which was, I am the this the Stoked on MS raffle that Santa Cruz bikes make this gorgeous, one-off Bronson with a very, very, very generously made me a gravel bike after the raffle winner won the Bronson, they made this one-off for me and since I got that at the end of August, beginning of September, I have barely touched the mountain bike and i did not expect to love it. And the reason I love it is because there’s certain things about riding a mountain bike; tighter, steeper, narrower terrain was becoming a stress, so that was playing into my balance and grip issues. Whereas on the gravel bike, I’m able to cover the miles, I’m able to strap on my bikepacking gear and have an night in a bothy on my own and just the sheer movement, the fact that I can, you know move forward be outside and cover some incredible distances on the gravel bike it’s been an absolute mind blower for me and the other thing that it’s totally opened up is that I’ve got a pretty detailed knowledge of Scotland, the landscape, the routes, the trails, but now with the gravel bike, I’m kind of looking at all of the mountain bike terrain and trails on all the OS maps and now I’m looking at all these lanes and tracks that could be pretty mundane for a decent mountain biker but in terms of a gravel adventure, I’m looking at Scotland with all the marks with completely new eyes and it’s just created a new, an absolutely amazing new dimension to ride. 

 
 

Geoff Allix   

So you’ve introduced Stoked-on MS there. Can you tell us a bit more about Stoked-on MS and the fundraising that you’ve done? 

 
 

Andy McKenna   

Yeah, so Stoked-on MS is obviously very tongue firmly planted in cheek because I’m only human so not really stoked on having MS but I’m quite genuinely, frustrations aside, I am quite stoked by the fact that MS has given my life a lot of depth and meaning and I don’t know that it’s given me purpose, but it’s certainly, it’s really awoken me, I might have thought I was living but certainly since having MS and figured out where I stand in relation to MS, It’s given me far, far more than it’s taken away, and Stoked-on MS, I’m a pretty irreverent, anti deferential kind of human being, I guess and I’ve always been inquisitive and curious and I’ve never been very good at taking the expert opinion without, you know, doing my own homework and deciding whether I agree or not, so Stoked-on MS was my reaction to being in this new world of MS and it was my way of sharing how I felt and how I was and it’s an evolving, it’s not a set in stone, it’s an evolving process how am I dealing with Stoked-on MS, It was a way to create dialogue and conversations with other people out there. I spent many years scratching around until I became aware of Overcoming MS. I feel genuinely that I’ve wasted so many years and at point of diagnosis I should of been made aware of this incredible organisation and Dr. Jelinek’s work and it was largely through scratching around, research, I found out about Swank then about OMS and Stoked-on MS was really just a way to keep that conversation, get it onto people’s radar and MS is not an often talked about subject in the mainstream and it’s certainly not a subject that’s on the kind of adventure, outdoor mountain bike sector. It’s not out there, it’s not a conversation that’s taking place and honestly our business, who I am, I felt there was a real opportunity and a real point to just creating some kind of noise, whether that be through Instagram or Facebook, through making the film, just felt as though MS isn’t a death sentence. So much of the conventional traditional media and support and even the way it can be discussed by professionals and the medical profession, It can feel quite dark and sinister and frightening. And I suppose I just feel as though it doesn’t need to be, yes it can be frustrating, but it doesn’t need to be out of your control and I think finding out about these amazing things like; Swank and OMS, I felt these these resources, these organisations were creating tools for taking some degree of control and management and I suppose that was my biggest fear with it. It just felt like before I had the mind shift and before I stopped denying that this was actually happening to me, I just feel as though there’s a real dearth of information out there, so I wanted to take a small step towards increasing awareness and just normalising conversations of this kind about this disease that’s, you know, there’s so many people that I now connect with that are affected by it, whether it be direct family members, friends, so if there’s any scope to just make people more aware of what MS actually looks and feels like, and perhaps even turn one individual onto OMS, I mean, I think that’s pretty important. 

 
 

Geoff Allix   

I should say that it’s well worth going to Stoke-on OMS website, I think is it just stokedonms.com? 

 
 

Andy McKenna   

stokedonms.org.uk I think it is 

 
 

Geoff Allix   

Okay. Or if you search for Stoked-on MS you find anyway in the search engine of your choice. But there’s an excellent film on there I think it’s only about half an hour long, It’s not committing it’s not like that new Scorsese film The Irishman which sort of three and a half hours. But no, it’s a very, very good film, I’d absolutely thoroughly recommend anyone to go on the website and have a look, It’s it’s a very good story and very well shot as well and it’s entertaining, informative and I found it an excellent watch. Also I should mention that through Stoked-onn MS you mentioned about the mountain bike raffle that you’ve actually raised over £70,000 for the OMS charity through your fundraising efforts. That’s an amazing achievement. 

 
 

Andy McKenna   

It’s a funny one, because I’m certainly not, I’m not a joiner as such, I’m not the kind of person that’s ever been very good at clubs or being part of organisations as such. But people say ‘Oh Andy you’ve got such a positive outlook’. I don’t have a positive outlook in the slightest, In fact if what was fueling me it was a positive outlook,iIf you had MS, It’s pretty hard to maintain a positive outlook. I said, it’s not a positive outlook that I’ve got, it’s a genuine belief, it’s a genuine belief in the principles that OMS has shared with the world. If you don’t believe it, you can’t sustain it and it’s not a false belief.  I’ve got all sorts of challenges just like anyone with MS, I haven’t cured myself of MS far from it but what OMS has given me is the tools to understand my disease or the disease, it’s not my disease, it’s just a disease. It’s given me the tools to understand my symptoms, understand the triggers, and allow me to influence and manage the outcomes in a way that didn’t exist before I became aware of OMS.  Stoke-on MS was just a place for me to have verbal diarrhea, about MS and the research that I was following up on. I’m you know, I’m very inquisitive so I don’t just follow the kind of internet headlines and next big cure and job test cures, you know, MS. I’m reading a lot of published medical papers and so on and i weigh it all up so I feel as though I’ve got a reasonably informed opinion and I share that and I think OMS is very important and should be shared. We actually are in the throw’s of a second documentary we haven’t actually started shooting it yet. I’m not going to say too much about that because I have no idea what we’re going to end up with to be honest, we didn’t know when we shot this my close friend Andy McCandlish, who was a photographer and is a photographer, when he filmed that with us, it was his first time he’d ever filmed anything, so we’re pretty proud of the outcome and we’re going to do something else that’s going to be a little bit different. It’s going to be the same in as much as it will be an honest account of the lives that we lead, but yeah, we were still quite surprised at the legs that that’s story and I am still receiving very, very supportive messages from people either directly or indirectly affected by MS. And the overriding feeling that we seem to share is that we were living life pretty well before our diagnosis, and before MS started to impact on our lives, but the reality is now, we’re really living because MS forces you to really stick deep and scrutinize yourself scrutinize your relationships, what’s healthy in your life, what’s not and it absolutely can be a catalyst, despite the frustrations and the cognitive and physical challenges it can create, it can be an incredible triggering element to change your life. And I actually genuinely believe that. Personally, I’ve got nothing against medication other than I’m not very trusting if the point can’t be proven to me, that this will benefit me and the only reason I have not going down the conventional medication route is because I haven’t had the confidence that we’re there yet in terms of the medications that are out there. So I manage MS. purely through the OMS protocols diet and my meditation still needs lot’s of work but I’ve got all sorts of tricks that I try and get into good space. I recognise the things that are triggering symptoms, and I back off, and I pull away from them and I double down on my on my dietary regimes, exercise is a massive component, both mentally and physically. And I actually think that one of the biggest things that the OMS lifestyle, it helps you get to a mental space where you can get some perspective and some insight on yourself. I think that’s down to OMS, It might just be the kind of person I am I don’t know, but I think it’s I think it’s important, I don’t want to sound like an advert for OMS but I can’t underplay how important finding OMS has been to me. 

 
 

Geoff Allix   

And just to finish off, you had one piece of wisdom or advice to give to someone newly diagnosed with MS what would that be? 

 
 

Andy McKenna   

Well, apart from sign up for Stoked-on MS and treat yourself to some free stickers, I would say that the most important thing you could do is get in touch with OMS and order Dr. Jelinek’s book and if the book is a bit too much for you to digest, just spend some time on the Overcoming MS website, the forums, there’s an incredibly friendly supportive Facebook group. I know that the MS world is full of all sorts of support, for me personally I had to disengage with so much of it because the the level of negativity was weighing me down. You will not find that in the OMS community, quite the opposite and I believe that will give you the hope and help you build the perspective that you need to get into a good place to take on the challenge and to wrestle with it and to turn it around into a way of life, that’s definitely worth living, 

 
 

Geoff Allix   

I should say actualy you mentioned the book, but it’s freely available to large areas of the world. So I think the UK, Ireland, Australia, New Zealand, and as an ebook in the US as well. So there’s a lot of places you can get it for free. It’s available on Amazon, if you live somewhere else, unfortunately. But if you live in one of those places, check out whether you can get it for free, tt’s a large book as well, considering you’re getting it for nothing and there’s a huge amount of research in there. But yeah, you said it’s quite heavy going you have to say that. So the Professor Jelinek’s Overcoming Multiple Sclerosis book is, it’s very science heavy. 

 
 

Andy McKenna   

It is and I suppose for me, that’s what actually was the clincher. 

 
 

Geoff Allix   

Yeah, likewise, I thought it’s the evidence, isn’t it? You know, that it’s not just saying, try this, it will make you better, because you need to trust it. It’s saying, here’s a huge amount of evidence and everything is backed up and fully referenced and you think, Okay, now this, this is and also that they’re not selling me something they’re giving me this for free. I’ve not paid them any money and it’s backed up with huge amounts of evidence. That’s what really turned me too OMS. 

 
 

Andy McKenna   

Absolutely. I think as well, I had a really great soundbite for you, Jeff and it’s gone right out of my head. But I think the one thing that I find incredibly persuasive about everything associated with George’s book is that in all of my research, obviously, I found out about OMS, but it didn’t stop me continuing to read scientific papers about all sorts of diseases, and modern diseases and so much of what I was reading in this science, although it wasn’t related to MS, there seemed to be the same themes relating to stress management, avoidance of certain foods, increases of certain other foods, there just seem to be so much overlap in all sorts of different unrelated spheres of medicine, that it just seems common sensical that only good can come from following an OMS diet, and I can’t see personally how there can be any negatives and if it slows down, reduces or obliterate your MS, then, hallelujah. 

 
 

Geoff Allix   

My neurologist was on board with that. I mean, he did say that, he said, we can’t say it’s proven to help with MS, but it will reduce risks of heart disease, cancer, diabetes, stroke, all of these things. and then on the other side of it, you think, Well, what am I risking? And it’s just that, I mean, Christmas coming up is when you sort of think, well, I’m not going to be having any cheese, there’s gonna be a lot of snacks that people are having that, you know, i’m having different things. So, yeah, some things I miss a bit, but not that much really. I just think you sort of when you start feeling better, you think that’s a whole lot better than a bit of Stilton. 

 
 

Andy McKenna   

Absolutely and, interestingly, I’ve got occasionally recurring not full blown symptoms, but I have five or so years ago, I had an episode and I talk about it in the film, where I got out of bed and fell over and couldn’t get up and then when I could get up I fell over again, and this was quite an alarming development. I think the kind of transition between denial and telling the world and, you know, I got a pretty sinister, not encounter but an appointment with my neurologist who I think is absolutely amazing, he’s a cyclist and and he gets what I do and how I manage things, but he gave me a pretty stark story, a very vivid picture of what the spinal cord looks like, and the nature of the inflammation and attacks that were ongoing, that were making me fall over, and that this was the, you know, this was the point at which I needed to think very seriously about, you know, taking the disease modifying drugs. To which I just asked some fully matter of fact questions about their likely impact and he says you’re professional, he couldn’t give me a definitive answer. But there’s no black and white with conventional treatments. And at that point, I suppose when I was literally between the waiting room and his office, I fell again, and he watched and he took notes on his clipboard and this is what he hit me with a fairly stark warning that I should really, now was the time when I couldn’t keep messing around and should take the drugs. But that was the point for me that I did the exact opposite and I really, you know, I really followed the OMS program, minus the drugs, obviously, I just didn’t feel that there was enough categorical benefit. And for me if the prognosis, this sinister story about the how small and fragile the spinal cord and how little inflammation it can or cannot take before the debilitating realities befold you.  I shouldn’t have been able to come out, I shouldn’t have been able to control those symptoms and I even know several years on, if I’m working too hard, there’s too many work related pressures going on, I used to thrive on pressure, this was the weird thing, that was my default setting and I think that was a contributing factor to my MS. But I also am aware that there are certain of these symptoms, are starting to creep back, I just have to say to myself, look, disengage, go rest, several days, loads of water, really drilling down on the diet, doubling down on the diet. Fortunately, we’ve organised the business in such a way that we have processes in place that regardless of the peaks and troughs that I may be going through, things keep going quite well and in fact we just won three awards at the Developing Mountain Biking in Scotland, the National Industry Awards for mountain bike, and we were just took Best Coaching and Guiding Company, Best Tour Operator, and Aneela just won Mountain Biking Local Hero for Scotland., so it’s a bit of a big deal, this just happened last Thursday, so despite the peaks and troughs that you know, it is a bumpy ride, that’s the honest truth. But when I recognise certain symptoms creeping back, i go ‘oh they’re the bad ones’, that will maybe be a tingling in the tailbone, that will be an electric shock down the left leg, leg weakness, and I just go right, you’ve left it too late, pull back, and I properly rest. I really double down on the day, my water intake and then I start to re-introduce exercise and the symptoms are gone. I shouldn’t be able to modify what’s going inside.  This to me is proof positive that we from our state of mind from the things that we’re putting into our body with can manage symptoms, how much permanent damage has or hasn’t been done to me through MS, no idea all I know is this protocol works for me and I am not looking at what’s coming out of the pharmaceutical worlds with open arms looking for, you know, a golden door that’s going to cure it. I keep an eye on things and I think right that might be something that’s gonna benefit in 10-15 years, in the meantime,  I’m just going to keep living the way I live. If something comes out if there’s a drug that comes out and it’s having incredible results and not very many side affects, I’ll be all over it, but at this moment in time, I just I’m not sure that it’s really there.  

 
 

Geoff Allix   

Thank you very much for joining us. Just like to say there’s a whole load of resources Stoked-on MS, they’re all linked in the show notes, so do have a look at Andy’s other websites there. And if you enjoy this podcast, please leave us a review or rating on the podcast platform of your choice and hope to join you on the next podcast. With that, I would like to thank you all for listening to this episode of Living Well with MS. Remember that there is a wealth of information at overcomingms.org including show notes and an archive of all Living Well with MS episodes. Once again, that’s overcomingms.org. There you can also find OMS friendly recipes and exercise tips, Connect with other OMSers in your local area through our OMS circles program, and learn about the latest research going on in the MS world generally and related to OMS specifically. I encourage you to register on the site, and stay informed about the latest news and updates. I also encourage you to subscribe to this podcast, so you never miss an episode. And please feel free to share it with others who might find it of value. Let us know what you think about the podcast by leaving a review and if you have ideas for future episodes, we’d love to hear from you. So please contact us via our website overcomingms.org. Thanks again for listening, and for joining me on this journey to Overcoming MS and Living Well with Multiple Sclerosis. I’m Geoff Allix and I’ll see you next time.