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The Ankylosing Spondylitis Podcast

Episode 22

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Published on:

10th Nov 2019

2:00pm

Episode 022: Grieving For My Old Life

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I apologize about my stuffiness in this episode. My allergies were really bad…

Hello and welcome to this episode of the Ankylosing Spondylitis podcast. It's really great to have you all back for another episode. This is going to be an interesting one; it's going to get a little deep, maybe a little heavy. First I want to start it off with an email that I received. This person named Shawn wrote me and said, 

"Hey, Jayson, I know it's late at night. I want to let you know I myself have Ankylosing Spondylitis. Diagnosed last year, May of 2018, I found your podcast and a Facebook thread and I've started listening to your show on Spotify. I've downloaded every episode and I'm listening to them all. Now there are so many things I can relate to that you speak about and I really appreciate the awareness you bring to our disease It really helps me to keep focused and not feel alone, (there’s that key thread not feel alone). Just wanted to say thank you for doing what you do. And hopefully we can keep in touch much respect for me a 41 year old male from Canada with AS.”

He and I traded a few more messages afterwards and discussed a little more in depth what he was going through and some of the similarities even though he was just recently diagnosed. Some of the similarities of things that he had encountered that I'd encountered were really interesting. It was great to talk to Shawn. 

Anybody that reaches out to me, I hope I've responded back to you. If I haven't, I really apologize and send me another message because, I'm not sure how I missed it and I apologize if I missed any messages from anybody. 

So back to the episode I want to start off first with the Question of the Week, when I look at the forums, I see a lot of talk about 

“I have AS and my parents, my spouse, my co-workers, they all just say stay positive. If you keep a positive attitude, you can overcome it. If you have positive thoughts, they can help you through some rough times.”

I came across an article that was pretty interesting, written in Healthline by Angie Ebba from June of 2019. The article and there will be a link in the show notes was titled “Stay Positive’ Isn't Good Advice for Chronically I’ll People. Here's Why.” Now, let me preface this with a few things. I tend to try and always say, if anybody asks me how I'm doing, “I'm doing fine, doing great.” You know, those are just the standard go to responses. Everything's good. We all know that with a chronic illness, we all can suffer from depression. It's just normal because you're constantly in pain. And you look around co-workers, friends, spouses who aren't dealing with these items, and it can just really play with your psyche and put you in a depression. As we look at that, if we have a spouse say, “Just stay positive!” or a parent that says “Just stay positive”, You know, you get through this, we know that they don't understand the pain and the issues of what a person with chronic illnesses/ chronic pain deals with. I want to believe that they're not saying that to be mean, or know what to believe that they're saying that to really be helpful to you, really to try and bring your spirits up, but I don't know if that works for all of us. 

I know for myself, it took me a long time to come to grips with the pain that I deal with. After my last hip replacement on my left side, (it was the third hip replacement), the doctor had damaged the nerves in my leg, and I now have a drop foot on my left leg and no feeling from the knee down. I went through all the various emotions. I used to like to hike, I was semi active. I liked to walk around, all the things that we take for granted. And now I walk with a cane and for two years, I was on crutches. So I went through all the emotions of grief about I couldn't do...

Episode 21

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Published on:

3rd Nov 2019

4:33pm

Episode 021: But Women Don't Get AS

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Hello, and welcome to The Ankylosing Spondylitis Podcast. Well, this is the month of November and I hope everybody's doing well.

First I want to take a minute to talk about the show itself. I cannot thank everybody enough for making October just an amazing month for the show. The download numbers were through the roof and the feedback I got on the episodes was fantastic. So I really appreciate that and we added in a number of new countries that have access to show

Let's get right into the show for the Question of the Week, I saw several people asking the same question online and it is can Ankylosing Spondylitis be inherited? Is it an inheritable disease you know, from one family member to the next generation to generation, in essence, it can run in families. In one of those markers, they used to look at it as the HLA- B27 gene. Now having this gene doesn't mean that you will get Ankylosing Spondylitis, but it is one of those markers that they look for. I found this kind of interesting in that research has shown that more than nine out of 10 people with AS carry the HLA-B27 gene, that's pretty amazing. It's almost 100% of everybody has it having this gene does not necessarily mean you'll develop as, as I said, it's estimated eight in every 100 people in the general population have the HLA-B27 gene, but most do not have AS so if you have it, you may end up getting AS but it doesn't mean you will. It also shows that's one of things you can look at it and family members and this particular person in the Question of the Week, they were wondering if they should have some family members tested for it because they and the other sibling had it. So I kind of replied back that it's not going to hurt anything. It never hurts to know if that gene is present because it could go along to explaining some future medical conditions if they run into AS it's also something to know that as we said as can run in families that gene can be inherited from familymembers to family member and if you have AS and test show you carry the HLA-B27 gene and their is a one in two chance that you could pass on the gene to any children you have is estimated that between five to 20% of children with this gene will then go out and develop AS that's still quite a wide variants of it. I have three kids they were all tested for the gene and if I remember right to came back with it, one didn't maybe all three had it. I don't remember exactly what it was, but they were tested and I believe my two older ones did have the gene one is showing some effects. I don't know if she'll come to grips with it. And hope you know, personally, I hope nothing ever develops of it. The other one is not nor is the youngest one.

With that said, let's move on to today's topic of discussion. The Question of the Week done, let's look at this week's topic. You know, when I was diagnosed with Ankylosing Spondylitis, I was told a couple of things. Now,granted, you know, this was 35 years ago, so a lots changed. But when I was diagnosed, I was told this is primarily a man's disease, you'll rarely if ever see it in women. And it's primarily disease people of Mediterranean descent.

What we found out is that is obviously not the case. So we know that today all these advances have been done in the research for Ankylosing Spondylitis that in fact, women get it probably just as much as men. I found this really cool article and it talked about different things dealing with a woman's diagnosis with Ankylosing Spondylitis. Again, as we've all heard, and been told women don't get it, but we know that that is incorrect. And I've had to do is look through the boards on Facebook, you'll see that there's just a ton of women dealing with this condition. So as we know, Ankylosing Spondylitis is an inflammatory form of arthritis that we get that starts in our SI joints or spine moves up the spine and then or can...

Episode 20

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Published on:

27th Oct 2019

3:57pm

Episode 020: Having a service dog, an interview with Riley Cook

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In this episode, I speak with Riley Cook about her Ankylosing Spondylitis and her service dog Gatsby and the various ways he helps her on a day to day basis.. Riley has been dealing with AS for about 10 years. A few years ago she decided she needed a service dog and took on the task of training Gatsby herself to perform the needed tasks. Gatsby can help Riley with a number of daily tasks like helping to steady Riley when walking, bracing for Riley when Riley needs to stand up, picking up items from the floor, pulling Riley’s wheelchair and so much more.

You can connect with Riley at her Instagram page (instagram.com/gatsbygoldenservicedog). Riley also has an apparel company called Aware with a Flare (awarewithflare.com). 

Riley mentioned the following service dog organizations:

Palmetto Animal Assisted Life Services - https://paals.org

Canine Companions for Independence - https://www.cci.org

There are numerous organizations that are available to try and assist people with getting a service dog. Here are some additional services/resources:

Americans with Disabilities Act FAQ - https://www.ada.gov/regs2010/service_animal_qa.html

Paws with a Cause - https://www.pawswithacause.org

Here is a link to an article from Ageless Paws discussing a service dog for dealing with pain management - https://agelesspaws.com/need-service-dog-pain-management/

Finally, here is a link to the International Association of Assistance Dog Partners - https://www.iaadp.org

Episode 19

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Published on:

20th Oct 2019

5:00am

Episode 019: A Short History of Ankylosing Spondylitis

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In this episode, I present a brief history of Ankylosing Spondylitis.  

But first, the Question of the Week; on one of the Facebook Forums, I saw a question related to leg neuropathy from hip surgery. Getting leg neuropathy from a hip replacement is a known issue that you can encounter. While both the Orthopedic Surgeon and the Anastesealogist are working on you during a surgery, your nerves can be damaged in a number of ways.  Here is an article that discusses it https://online.boneandjoint.org.uk/doi/pdf/10.1302/0301-620x.99b1.bjj-2016-0430.r1

In the above article, it describes Nerve Palsy after total hip arthroplasty. This is the condition that I had and it ended up causing damage to the Sciatic and Femoral nerve resulting in drop foot and no feeling from the knee down in my left leg. It is a very good read and something you should discuss with your surgeon before a procedure.

In dealing with the history of Ankylosing Spondylitis, it’s probably easiest to lay out the past as follows (thank you to MedicalMarijuana.com).

History of Ankylosis

Ankylosis has a long history, which includes these events:

·       Early in the second century CE, the physician Galen distinguished it from rheumatoid arthritis. (GalenCommodus)

·       In a 5,000-year-old Egyptian mummy, people who examined the remains found skeletal evidence of “bamboo spine,” or a total fusion of the vertebrae.

·       In 1559, surgeon and anatomist Realdo Colombo described what may have been the condition. (Realdo Colmbo)

·       In 1691Bernard Conner published the first account of skeletal pathologic changes linked with ankylosing spondylitis. (Bernard Conner)

·       In 1818, Benjamin Brodie became the first doctor to document an individual thought to have ankylosis along with iritis. (

Episode 18

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Published on:

13th Oct 2019

5:00am

Episode 018: 10 Natural Treatments to try for Ankylosing Spondylitis

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In this episode, I look at 10 natural ways to help cope with Ankylosing Spondylitis.  As with anything related to the treatment of your medical condition, please consult with your doctors about any exercise or procedures you want to try. 

I used the following article as a basis for this discussion:  https://www.healthline.com/health/ankylosing-spondylitis-natural-treatment

I outlined my experience with:

1.     Stretching

2.     Heat Therapy

3.     Cold Therapy

4.     Acupuncture

5.     Massage Therapy

6.     Movement

7.     Exercise

8.     Alexander Technique - www.alexandertechnique.com/teacher/northamerica/

9.     TENS Therapy

10. Stop Smoking

As always, take care and discuss any of these with your doctor. I am not a doctor and this is for informational purposes only.

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About the Podcast

The Ankylosing Spondylitis Podcast
A podcast for people with Ankylosing Spondylitis
A podcast for people with Ankylosing Spondylitis. I am Jayson Sacco, a 34 year plus Ankylosing Spondylitis survivor. With this show, I want to bring the AS community together and talk with doctors, organizations, and individuals all dealing with AS.

About your host

Profile picture for Jayson Sacco

Jayson Sacco

I host two podcasts, the first is Outdoor Adventures with Jayson where I discuss hunting and fishing topics in America and around the world. The second show is The Ankylosing Spondylitis Podcast. This show deals with the autoimmune disease I've been dealing with for 35+ years.