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The Ankylosing Spondylitis Podcast

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A Health, Fitness and Society podcast featuring Jayson Sacco
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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.

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Episode 023: Diagnosed with Ankylosing Spondylitis, Now What?
Hello, and welcome to this episode of The Ankylosing Spondylitis Podcast. This is going to be the 23rd episode already. This is fantastic. In this episode I'm going to talk about, you've been diagnosed with Ankylosing Spondylitis. Now what? First I want to recognize that it's just been amazing. The number of downloads I've seen coming through for November, is looking like it could top October, which was a record month. So thank you to everybody that's listening. Thank you for all the feedback I've been getting. We've also had some people checking out the show from a couple new countries, South Korea, Bulgaria, Singapore, and Honduras. So welcome to those new places, and also a flurry of people out of Ireland have been downloading the show. So to all the listeners, Thank you so much. So let's jump in and do the Question of the Week.What was I going to talk about? Question of the Week. Oh, yeah. Brain fog. I don't know about y’all, but I've seen this discussed multiple times throughout the forums. I get these brain fog episodes. I get things like I can't quite comprehend anymore, and I myself get that. I do a weekly trivia game and there's answers that pop up that I know. I know them and I just can't think of them or I want to say something to somebody and I, I sit there and it just rattles around my head. I'm like, “I know the answer”, but why can't I get this out?Well, forgetting names, losing words, trouble concentrating. You know, brain fog is common. It can be disturbing. I don't like getting in and I'm sure nobody else does. It can be thing that causes concern when you're at work, if you forget things, will I forget things? Did I forget something? All that can play into your stress related to work and maybe even trigger a flare if it gets too bad? A study done in 2018 that was on Rheumatoid Arthritis patients, not Ankylosing Spondylitis patients, but I think there are enough similarities that is of interest in that study found that they think that there's a connection between inflammation and cognitive dysfunction. The inflammation disrupts signals between pain receptors in the brain literally fogging up mental functioning. That's very interesting. So I'd be curious if anybody's brain fog gets worse during a flare, have you noticed it? Have you noticed in times of high stress, your brain fog gets worse? You know, now, I haven't had any writing or spelling issues result of that. I'd be curious to know if any of you guys have mine is just recalling certain things. My recollection of facts and figures gets real murky. There are also some medications that may potentially cause some brain fog. One person I saw blamed their brain fog on Humira. I don't know if that's true or not, that's just what I saw them saying. Other drugs, such as prednisone, it's put out there to reduce inflammation, but it can sometimes affect cognitiveIssues. Again, I found nothing that said these were long-term effects. They were more short term when. drugs were in your system. There's also some cholesterol lowering statins, which may contribute to brain fog. I'm on one of those. And that may also be part of the issue. See, there we go. Couldn't get the words out. I'm going to do this, I suggest you do this as consult your doctor. I'm not a doctor. None of this is, you know, hard and fast medical advice is just to make you aware of some issues so that you can bring these up and talk to your doctor about them. So you're not going crazy. Most likely, these are not long term permanent effects they may most likely are medication effects. So again, talk to your doctor, see what he or she says is the best course of action going forward. I've seen one person and this is only for states where it's legal, obviously, who swears by cannabis to control the brain fog. It's not something I've tried, but...
Episode 022: Grieving For My Old Life
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 021: But Women Don't Get AS
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...

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Podcast Details
Started
Dec 3rd, 2018
Latest Episode
Nov 17th, 2019
Release Period
Weekly
No. of Episodes
23
Avg. Episode Length
22 minutes
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