Jayson:

Welcome to this week's episode of The Ankylosing Spondylitis Podcast. Today I'm very excited because we're going to touch on a subject that I get a lot of requests and information about, and that is yoga, specifically yoga for people that have Ankylosing Spondylitis. And today I've got both Jamie Boder and Geoff Lindsay on. Jamie is an instructor and teaches people yoga right now virtually. And he's located in England. And Geoff is an instructor , and  has his classes that he shows and demonstrates different processes. So Gentlemen, welcome.

Jamie Boder:

Thanks for having me, Jayson.

Jayson:

It's great to have you guys. So, Jamie, tell me a little bit. You also have Ankylosing Spondylitis. Tell me a little bit about your diagnosis. And then were you into yoga prior to your diagnosis or was that something you came to afterwards?

Jamie Boder:

So I started experiencing some things when I was about 14 and was put to growing pains and then other different conditions, lots of different lists. And eventually, I asked my GP, I need to see a rheumatologist just how to interlink. And then the day I saw her, she said, Yeah, I'm pretty sure it's this condition. And that was when I got to about the age of 18. That's when I got my diagnosis. And at first, it was a lot to take in. And I don't think the Internet can always be a very helpful place to learn about the condition if you're new to it, but that was my position. And the biggest thing that I was really thinking about was being a skateboarder half of my life, started skateboarding when I was like six years old, I was like, I can't stop. This isn't my big passion at the time. It was something that you know, competed and a very huge part of my life. So anyway, I went to a support group, and I wasn't very up for it, but I kind of forced myself to go, and that's where I met Geoff. And Geoff looked really in a good place, physically and just had something, you know, looks very healthy and I asked him, What were you doing, Geoff, you know, you must be doing something different from other people. And he told me about yoga. And it was that day, I went home and literally dedicated myself to practicing yoga for about, yeah, just pretty much every day for a year. I just didn't stop and yeah, transformative, to say the least. So that's a little bit about my journey with yoga and AS and have been practicing ever since and now teaching as well.

Jayson:

So how many years has that been now?

Jamie Boder:

So it's been about five years of being practicing yoga consistently, nearly every day.

Jayson:

So with that, have you noticed any worsening like in your x rays that your GP will do?

Jamie Boder:

So when I first started having symptoms I was in such a lot of considerable pain and struggled to. I had a bit of a limp and couldn't sweat definitely couldn't do any sort of sports, just essentially very desperate. And for the last two years, I've had stiffness but I haven't had any pain whatsoever. And that's was a bit you know, huge huge for me. So yeah, I'm in terms of x rays and things like that. I last had an xray about two years ago, and there's things are looking pretty good.

Jayson:

Now, are you on any medications or biologic anything to help with that?

Jamie Boder:

I haven't been for on biologics for a year. I stopped biologics about a year ago, because I'm not for or against medication. I know medication can work very well for some people. But for me, I was at the point where I didn't feel like I was in need of it. And therefore I stopped taking So not on at the moment, but something me and Geoff will always emphasizes, if you're on medication, yoga can help with that medication with it's all integrative. So we're not we're not against using medication when necessary. And sometimes this happens in holistic worlds where they say, right, this is where this is our approach. You should stop all your other approaches. What we're saying is, this is a tool that you can use, you can harness and you can apply to your current life situation. And that's where things become very empowering.

Jayson:

Now, Geoff, so you've been practicing yoga for how long?

Geoff Lindsay:

About 30 years, a little over 30 years. I'm now 71. I started going to a yoga class once a week when I was about 40. I at the time was undiagnosed. I've been having symptoms for about 17 years. I started when I was 24. Then I found that yoga was making me feel good. It was relieving my pain. And I didn't understand why that was at all. But as we all know, it's an illness that generally progresses and it got to the point where I couldn't go to yoga. I couldn't go to class, I couldn't lie down, I couldn't sit down. My score on my overall disability level went up to about 8.5 out of 10, which was pretty bad. So then I get diagnosed, and I get put onto medication and medication was like a magic bullet for me, instant pain relief. I also then went on to a two week AS rehabilitation course at the Royal National Hospital for Rheumatic Diseases in Bath, England. And that course has now been running for about 40 years. I've been on it three times and on that course I learned that when we have AS, we have inflammation both in the joints themselves, and also in what are called the enthesitis, which is where, the ligaments and tendons and muscles join onto the bone. And when you get inflammation in the joints, and in the enthesitis, stretching, elongating extending unfolding, literally breaks up that inflammation. So that's why going to yoga all these years, I felt so much better. So in combination with the medication and continuing yoga, I was feeling really good and basically my AS has not gotten any worse in the last 10 years. The X rays, so no worsening which I'm told is quite something for a 71 year old. I have an active life. And because I practice yoga regularly and I do the kind because I'm so experienced now say that I've been doing yoga For more than 30 years, so I kind of know what I can do and what I can't do. And what's good for me and what isn't, I can like now I've been sitting for 20 minutes, I'm starting to get an ache in my back. And I, I can do a couple of twists, I can do a couple of poses, and I can relieve that pain. After we've done this session. When I've been sitting down for a long time, I'll do maybe half an hour's whole body yoga, and that will relieve my pain for the rest of the evening. So I guess our message is that a young guy and an old guy, we've both discovered that yoga can be modified for AS, it can be made safe. The good thing about yoga is that people will stick at it because you can go to a yoga class anywhere in the world. So if you choose your style of yoga, wisely, if you go to a beginners level, you go to Hatha Yoga, that's the safest way and you choose your teacher well, then people stick at it generally. There are benefits. Of course, there are risks. So I don't advocate anybody doing anything that compresses the spine. So for example, headstand shoulder stand, something called the plow. And for most people, there are modifications which need to be done. For example, everybody thinks of yoga when you're sitting cross-legged on the ground. I can't sit cross-legged on the ground very easily. You just move your feet a little bit further in front of you and sit on the block or sit with your back to the wall and you can still get the benefit of some of the stretching and extending and elongation that we do in yoga poses.

Jayson:

Okay, so a big thing here in the States has been classes because of the aging population, has been the what are termed senior yoga classes, which I've always kind of termed those as a arthritic yoga classes well, only because they really try to emphasize maybe sitting down and doing different things from a seating position, some basic stretching. And I've always kind of thought that's a good spot for somebody say that's very fused and in my condition versus somebody like Jamie, who, you know, skateboards and is a very active young man, that stuff would kill me. So, is it fair to say when you're looking for somebody that's a yoga teacher? And is it fair to say, when you go in and talk to the teacher to say something like, do you have experience with arthritis or ankylosing spondylitis? Are you really shopping for somebody that understands the condition, correct?

Geoff Lindsay:

Absolutely. Yeah. My vision is that, you know, when you're diagnosed, you're being told basically, you've got a painful, incurable, progressive, invisible disease of the autoimmune system. That's pretty bad news. Can we have some good news? Can we be told that out there, there is a yoga teacher who is qualified in yoga AS. Now the Arthritis Foundation in the States and here in England offer the class, Yoga for Healthy Lower Backs. They both set up courses for yoga teachers and for students with yoga for patients. So that the Arthritis Foundation is mainly for people with osteo and rheumatoid arthritis, the Yoga for Healthy Backs in England, it's not specific to AS so we need a kind of yoga teachers do and yoga students do short of that. I don't think it's right to say to people just go to any old yoga class, you need to get somebody who is qualified, experienced and on our Facebook page on our group Yoga AS you can join that if you have AS we have a series of resources on what kind of yoga is right for you, how to choose a teacher, how to choose a class, all of those things, there's a lot of detail in that. But basically find a qualified teacher, ring them up, speak to them, explain your condition to them. They may not know what AS is, and I have found this, so you do have to be extremely careful.

Jamie Boder:

Yes. So my points that there is, in terms of finding a teacher, sometimes it could seem overwhelming to be like, Okay, well, I want to get into yoga, and I've not done yoga before. It's a big step to then go and start, you know, trying to find people but the next steps you can do is reaching out to us. You can get to know what yoga can really be catered for you. You can join our community learn more about how yoga can can be modified to see your practice and then once you get the ball rolling, and you start seeing benefits and how you feel Then that's a real motivator to then go, do you know what I want to find a teacher in my local area, I want to find someone who can take this further. So with that being said, if you want somewhere to get started, reach out to me and Geoff, and then from there, we can work with you. But there's also, you know, there's some amazing teachers out there as well. One thing that to get, you know, the we're excited about is we're working on a series of whole yoga series, and online video series, which is very in depth, which will be another great resource to get started with and use as a tool for those who you know, and especially during these times, getting a teacher in person will fluctuate in difficulty. So having somewhere to start, if you're listening to this and thinking, Well, I have not done yoga, but this looks like something I want to do, you know, reach out to me and Geoff and you know, that's a great place to get started and you know, you can go from there. And with me, I found that because I started realizing how important this was. I took it very seriously. And I think once you realize the benefit, you will. And going back to Geoff's point about styles of yoga, we do advocate what's known as Hatha style of yoga. And that's because it's very much focused on understanding the movements and the correct alignment before jumping into them. That being said, I very much go by the mantra that if your body is able to move in a certain way, and you feel comfortable doing don't feel like you can't do other styles of yoga, but you need to start by understanding what works for you first, and that's where you need to start with a level that's very adjusted very basic. And then from there, your practice can grow and evolve.

Jayson:

And what's that style called again?

Jamie Boder:

Hatha, sometimes or sometimes pronounces Hatter, and it's essentially a call and response style. So the teacher will show you or show the student, the posture, the student observes. And then they will, the student will try it out for themselves. And that's why our videos, you watch the video, you look at the posture, and then once you understand it, you copy it, instead of just trying to kind of think your way through it. And that way you can emphasize safety.

Jayson:

Okay.

Geoff Lindsay:

Okay, so what we've actually done about that, Jayson is we've produced two films, one called First Steps, and the one called Next Steps. And Jamie has a version of those two and I have a version of them. And we're planning on another three, so we envison about five different levels in total. That was what we thought the feedback that we're getting is that we need something even simpler than First Steps. We need to do more stuff that's suitable for people who've, because of the pain; they have become sedentary in their behavior. So they're really starting at a point. Before First Steps, so we think we're going to have to do something there. People are asking for shorter videos, 10 minutes slots. And they're also particularly asking for yoga, which helps with pain in the sacroiliac joints. So we aren't just talking about yoga, we've already got four films out there that people with AS can follow. It's yoga modified, but we recognize that there are such a wide range of presentations. Comorbidities like hip replacements, like you can have osteoporosis, I have recurrent uveitis. So the Yoga has to be modified for the point that somebody comes to it. So Jamie was waiting, he came to yoga he was 19 still very, very mobile. For a lot of people in England anyway, the waiting time for diagnosis is about eight years. If you've had all that pain for eight years and like me, you had to stop playing football, running and dancing and all the rest of it. You don't come to it at the point where every other every person is of the same age. So we recognize there are different levels. That's why we've got those films and you can find those films either on YouTube at Yoga for AS, or on our Facebook group, which is also Yoga for AS. We've now got 360 people from around the world in our Facebook group.

Jayson:

And I honestly don't know as as I age and look at just the economics of Ankylosing Spondylitis. I don't know why when somebody is diagnosed now biologics are expensive and the medications are expensive. The lost wages are expensive. The disability is expensive. Everything around this disease is expensive to not only the person with it because it robs them of their life, their livelihood, and their current and potential future productivity. If I was a health care provider, you guys have the NHS National Health Data site. Yeah, here in the States we have different health insurance companies and so forth. I don't know why, Jayson, you were just diagnosed with ankylosing spondylitis. Here's a biologic and here's a prescription for a yoga class set up by the health company. Hey, if you want to stay covered, you have to go or some form. I'm not telling you to go out and play American football or rugby or soccer or something that I'm not asking you to go get hurt. I'm asking you to go spend an hour a week stretching. Go more if you want. You know, they could theoretically have an instructor in there five days a week you could go one day a week, you can go five days a week, you can, whatever it's open. And to me that would be far cheaper in the long run then continuously writing scripts for biologics, pain meds, disability policies, you name it.

Geoff Lindsay:

Yeah. And we would very much like I mean, Novartis are already doing series, Living with AS with the singer from something(Imagine) dragons. We think that some of the medication providers should be interested in what we're doing, because if we are helping the medication to work, there are better outcomes for those health care providers. And so it works two ways. If, for example, my anti-TNF medication which I take once a week, if that works longer, because I'm helping the medication to work, then that is better for those medications providers. So if there are any medication providers out there who would like to talk to us, we do need some funding, because we need to take this on to the next level. There is a global interest in what we're doing. Now we have had Facebook page grow enormously in the last six weeks, we've got hundreds of people and people joining every day from all over the world. And we have some very, very severely disabled people, not only people with AS, but also their husbands and wives as well, which is something, which is really important consideration. You will stick at something if you're getting support from around here. So if somebody says you've got to do this fitness prescription, but it involves me going off into my lonely room with my horrible diagnosis and doing something called exercises I'm not going to do it and people don't do it. But if you saying, I'm going to do this with your wife, then your wife understands about your pain and what helps you relieve your pain. And it's a nice thing to do. So, you know, we're growing here.

Jamie Boder:

Just add to that point you can practice knowing that there are other people out there they're also using yoga as a tool for AS, so you know, for example you might not be in a you might not be married, you might live on your own, but you can know that there's a community of people worldwide that are practicing Yoga for AS and that's a very empowering thing. And I think one thing that I really mean is Geoff is very passionate aboutAS you know, knowing that there is so much we can do, and a big step towards it is you know, a regular yoga practice in a way that is empowering. You're not in years sometimes people were given an exercise sheets and told to go and exercising, that's hard to stick to hard to be accountable. But when you have that level of accountability, it can make a big difference. So that's why community is very important. Even if it's virtual, it's still a powerful tool.

Jayson:

I see it satisfying two things because, as I mentioned with Geoff, the ability to get a prescription and go to a class, but also the the isolation feature, if once or twice a week, I'm going to a yoga class and not going from work and going home. I'm staying out mentally stimulating myself as well as physically stimulating myself and not falling into the doldrums of I'll just go home and sit in front of the TV and eat and I'll maybe I'll stretch but as you said there's no accountability. Whereas if I go out, and I even though that instructor is not going to flog me if I don't, you know, do my exercises, there's still that level of accountability. Because you don't want to look like the worst person in class, you want to look like you at least can, in some form or fashion, participate, but you want to belong. And again, I look at it more as a mental stimulation. And again, from an insurance standpoint and an NHS standpoint, the Canadian healthcare system, you might not end up on more medications, all of this works to try and keep you off these medications, which are expensive. They're just flat out