Welcome to our virtual community! Start by browsing through the personal stories featured here.
We have organized these stories into two categories: Your Stories -- stories sent to us at the Spondylitis Association of America -- and selections from The Faces of Ankylosing Spondylitis project. You will also
find episodes of
AS Life Live!”
an online talk show for people with AS hosted by Dan
Reynolds – an AS patient and lead singer of the rock band Imagine Dragons.
We’d love your story as well! Send it to us at Programs@spondylitis.org
By Lianne & Scot Gensler
Thursday, May 3, 2018
Imagine Dragons lead singer Dan Reynolds discusses living with spondylitis with rheumatologist Lianne Gensler and her husband Scot.
Dan: Welcome to This AS Life Live!, which brings together people with AS to share our stories and inspire each other to live our best lives. Today I’m sitting down with Dr. Lianne Gensler, a rheumatologist, and her husband, Scot, who lives with AS. We’ll get two different perspectives about the importance of staying physically healthy when managing the symptoms of AS. I hear the Genslers have a lot of great tips, so let’s get started.
Dan: Hey, guys.
Dan: How are you?
Lianne: Nice to meet you, good.
Dan: Come on, have a seat, guys.
Scot: Thank you.
Dan: So, Scot, tell me what you do for a living.
Scot: I’m a full-time dad most of the days, you know. Um, I do spend a lot of time with the kids. But professionally, I, uh, I’m an entrepreneur.
Dan: Tell me about the first time you experienced any AS symptoms, and then lead me through to your, kind of, diagnosis.
Scot: Yeah, so in high school I had hip pain, where it actually hurt to sit, and I had no idea why. And it wasn’t until years later, in my early twenties, that I had a uveitis flare, and I happened to be in front of an eye doctor, who said, “You know what? You should really go see a rheumatologist.” I thought that was interesting. So I went to see a rheumatologist, who then did the HLA-B27 test, came back positive, which I guess increases the likelihood that you have the disease, and then diagnosed me in my early twenties.
Dan: Let me ask you, Lianne. So how did you get so passionate about AS? Kind of tell me your story.
Lianne: I was going to be a kidney specialist. And because I made a late switch, the only opportunity for research was in AS. And so I actually landed up doing AS research as the very first thing I did in rheumatology, and about the same time I met him.
Dan: What are some of the questions, the typical questions that your patients ask you in regards to physical health?
Lianne: I mean people always want to know what the right exercise is. What should they be doing? And I don’t know that there is a, one prescription for all, on that. I would say as long as you’re exercising, whatever, whatever makes you happy is probably the most important way that you exercise. I think weight management is actually a big component of the disease. We know that carrying extra weight around is actually inflammatory.
Lianne: So I would say in general, exercises that draw from core strengthening and stretching are really important. I think that’s why yoga comes up, because it actually does both of those things, in addition to some mindfulness, which is also important.
Scot: Yeah, so I’ve been doing yoga, you know, pretty routinely for the last seven, eight years and she spent a couple years trying to get me to do it at the beginning. I think the thing about yoga or any form of exercise is to be really patient during the early days. And like in my case, I know that if I exercise in the morning first thing before I start work and kids and life and friends and everything, I’m going to have a great day. And if I don’t exercise in the morning for a day or two or three, I’m gonna not feel so great.
Dan: So are there any exercises you guys do together, or activities you do together?
Scot: Yeah, I mean, we do hikes. We do a lot of kid stuff, kid-related, kind of outdoor stuff now.
Dan: So what are ways you’ve had to change, um, any activities in your life, or things you like to do, because of AS?
Scot: Yeah, I mean, the number one thing isn’t a specific exercise, but it’s scheduling it. It’s finding the time and making the time to have it consistently.
Dan: Yeah, I feel like that’s something pretty common with people who have AS, is they find that structure is really important.
Scot: Yeah, I agree with that a hundred percent.
Dan: A question I have for you guys is, you talked about these exercises. I would like to see, if you guys are cool with it, to see some of the exercises you do.
Lianne: Yeah, I mean, I think just sitting on the couch, because we sit on the couch watching TV after the kids go to bed, and I think there are things you can do just sitting here that are very helpful. Little things like just spinal twists, and you can do this even in your office chair, where you’re holding onto something behind, and then just twisting in both directions.
Scot: Yeah, taking a deep breath and…
Lianne: Breathing into it.
Dan: I do this on the airplane all the time, and the person behind me is always like, ah huh. Well hello.
Lianne: Neck stretches are very easy to do, because you don’t even have to get up. So I think that there are little things like just turning your head from both sides, but then also using your hand and gently pulling down, half and back, you can sort of feel it like that.
Scot: I do little, little neck rolls a lot. You know, and I think, like we talked about, being really conscious about not getting, kind of holding your stress of the day up there, and just, you know, backing down and relax.
Lianne: Yeah, shoulders, um, that is also another one that’s helpful. And then I think even just from a hip standpoint, because a lot of people become tight in the hips, whether it’s because they’re exercising, like running and biking, and that makes you tighter in the hips, or because of the AS itself. So things like shoelace, which just, um, bringing your one leg in.
Dan: So why, why would you say it’s so important to maintain good health, uh, when trying to manage your AS?
Lianne: We should be empowering patients to treat their health in a more holistic way. And many patients need medicines, and that’s very appropriate. But beyond that healthy lifestyle is really important and I actually think for a lot of patients, um, that do one or the other, they aren’t able to optimize their health with either one alone. Certain exercises may be more helpful for certain patients. Eating in a healthy way. Making sure you’re getting good sleep. All of those—hydration—all of those things are really helpful in optimizing health. And I would say some of that is driven by my, by me watching Scot.
Dan: Guys, thank you so much for being here today. Um, this was really educational and very enlightening for me. I appreciate it.
Scot: Thanks, it was a fun conversation.
Dan: I hope to see you again soon.
Scot: Cheers. Pleasure.
Dan: Great to meet you.
Lianne: Very nice to meet you too.
Dan: I hope you find the tips from Scot and Lianne as helpful as I did. Now I’m off to meet more people living their AS life. As always, I encourage you to visit ThisASLife.com for other episodes and share them on social media. See you next time.
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