{"id":9609,"date":"2023-01-24T08:38:52","date_gmt":"2023-01-23T21:38:52","guid":{"rendered":"https:\/\/recoveryafterstroke.com\/?p=9609"},"modified":"2023-01-24T09:06:50","modified_gmt":"2023-01-23T22:06:50","slug":"the-link-between-lupus-and-stroke-kristy-duncan","status":"publish","type":"post","link":"https:\/\/recoveryafterstroke.com\/the-link-between-lupus-and-stroke-kristy-duncan\/","title":{"rendered":"Link Between Lupus And Stroke – Kristy Duncan"},"content":{"rendered":"

Kristy Duncan experienced an ischemic stroke many years after living with Lupus at age 52. She\u2019s on a mission to remind other lupus warriors about becoming complacent about the condition.<\/span><\/p>\n

Highlights:<\/p>\n

02:12 Introduction
\n02:53 Diagnosed With Lupus
\n03:49 Having The First Stroke Symptoms
\n06:07 What is Lupus?
\n09:18 Life In The Military
\n18:11 Learning How To Have Self Compassion
\n28:51 Dealing With The Physical And Emotional Stress
\n42:02 Recovery In And Out Of The Hospital
\n50:16 Kristy’s Mindset While Having A Stroke
\n54:01 The Pseudobulbar Affect
\n1:01:28 Finding Humor In A Terrible Situation
\n1:10:10 Dealing With Post-Stroke Deficits<\/p>\n

Transcription:<\/p>\n

Kristy Duncan 0:00
\nBecause of my APS, they told me that I was not a candidate for any type of clot buster. But while I was in the ER, I had full bodily functions, as a matter of fact, they let me get out of bed and walk down the hall to the restroom when I had to go unattended.<\/p>\n

Kristy Duncan 0:21
\nBut then my blood pressure actually started to drop. So then they did another scan. And then that’s when they saw that there was starting to be some brain tissue death. And then that’s when I couldn’t do the finger touches anymore. And then I started to have problems I couldn’t raise my arms on my left side.<\/p>\n

Intro 0:45
\nThis is the recovery after stroke podcast, with Bill Gasiamis, helping you navigate recovery after stroke.<\/p>\n

Bill Gasiamis 0:58
\nHello, and welcome back to the recovery after stroke podcast. This is episode 234. And before I get started with the rest of the show, I would like to give a shout-out to all the people who reach out and let me know how helpful it has been for them to come across the podcast.<\/p>\n

Bill Gasiamis 1:15
\nSometimes it’s the first place they discover after they themselves or their loved ones experienced a stroke. Not only that this is a shout-out to all my guests so far as well and the ones to come, because without their stories and willingness to share them.<\/p>\n

Bill Gasiamis 1:31
\nThis podcast doesn’t exist. Just this morning, I woke up to an email from Naomi, who told me about her husband who is a physician that experienced a stroke just 11 days ago. And since then she has found comfort in the interviews.<\/p>\n

Bill Gasiamis 1:49
\nAnd it has helped her somehow deal with all of the unknowns that have come their way. So thanks again to all my guests and to all my listeners, you are helping me create this beautiful tool and it has come from such a terrible time in my life. And I’m forever grateful for how things have turned out and for everyone that is helping me to do what I love.<\/p>\n

Introduction – Kristy Duncan<\/h2>\n

\"Lupus
\nBill Gasiamis 2:12
\nSo thank you. Now my guest today is Kristy Duncan who is living with two autoimmune conditions that increase the risk of stroke. They are lupus and antiphospholipid syndrome. Kristy experienced her stroke aged 52 and joins me to help raise awareness in the lupus community and encourage others living with the condition to be more proactive, decreasing the risk factors that may cause lupus to generate blood clots. Kristy Duncan, welcome to the podcast.<\/p>\n

Kristy Duncan 2:47
\nThank you so much for having me.<\/p>\n

Bill Gasiamis 2:49
\nIt’s my pleasure. Tell me a little bit about what happened to you.<\/p>\n

Diagnosed With Lupus<\/h2>\n

Kristy Duncan 2:53
\nWell, it actually started a long time ago, I have lupus. And that was diagnosed in 1994 with my first life-flight I was in the military and I started having chest pains at the tender age of 23. And they couldn’t figure out what was wrong with me.<\/p>\n

Kristy Duncan 3:18
\nAnd it turned out that the sack around my heart was filling with fluid and crushing my heart. So they had to send me via medivac to a better hospital to do emergency heart surgery. So that was in 1994. So I’ve had lupus for a long time. And unfortunately, kind of lost sight of the stroke risk and the blood clot risk. And so did my doctors unfortunately.<\/p>\n

Having The First Stroke Symptoms<\/h3>\n

\"\"
\nKristy Duncan 3:49
\nSo that in November of 2021 it was veteran day of all things which I find kind of ironic, since all of this happened to me when I was in the military. My husband and I decided to go fishing and hiking. And so we were a couple hours from home is beautiful area.<\/p>\n

Kristy Duncan 4:14
\nAnd as a matter of fact, an hour before I had the stroke symptoms start we were literally standing on top of a waterfall, looking down over the mountain. And thankfully it didn’t happen at that moment, got back in the car and drove to a little stream and I was filming my husband catch some fish, got into the car, sat down.<\/p>\n

Kristy Duncan 4:38
\nThe first thing that hit me and it still kind of bothers my husband to this day. If I get a bad case of hiccups. I guess hiccups can be a symptom sometimes in women, long duration of hiccups. So I had really bad hiccups that won’t stop.<\/p>\n

Kristy Duncan 4:56
\nAnd I guess I just wasn’t acting right, I’m not really sure he just knew something was wrong. And I don’t know if I was slurring to him or what it was. But he drove down to a little store. They got a local EMT that looked like he was about 15 years old.<\/p>\n

Kristy Duncan 5:17
\nAnd he came and asked some questions. And he called an ambulance. And then the ambulance, they came and asked me some questions and asked me to squeeze their fingers and looked at me. And it was when I was talking to them then I started hearing that I was slurring, and I sounded like I was drunk.<\/p>\n

Kristy Duncan 5:39
\nAnd then they called the helicopter that landed in a field on top of this mountainside. And that was my second life flight, and flew me to the hospital, where they told me I had had a stroke. And that was a very scary time, still during COVID.<\/p>\n

Bill Gasiamis 6:03
\nTell me, what is lupus exactly?<\/p>\n

What is Lupus?<\/h2>\n

Kristy Duncan 6:05
\nLupus is an autoimmune disorder where your body creates antibodies that attack primarily with lupus, it’s collagen, which is pretty much in every organ in your body. And I have the systemic form of it. Systemic lupus erythematosus.<\/p>\n

Kristy Duncan 6:28
\nAnd I also have another autoimmune disorder, which is what actually caused the clotting, which is called antiphospholipid syndrome, where my body creates antibodies that attack phospholipids, which are on cell walls and in blood vessels. So basically my own body turned against me.<\/p>\n

Bill Gasiamis 6:54
\nYeah, do the two conditions often go together lupus and antiphospholipid syndrome?<\/p>\n

Kristy Duncan 7:04
\nI think it’s about 50% of lupus patients also have APS. But you can have APS as a primary autoimmune disorder as well.<\/p>\n

Bill Gasiamis 7:21
\nWithout the lupus.<\/p>\n

Kristy Duncan 7:24
\nRight, but lupus in and of itself puts you at a very high risk for blood clots as it is four times higher than the average population is matter of fact.<\/p>\n

Bill Gasiamis 7:35
\nWhat would be the regular way to manage the lupus condition? For people who have it? So I’ve heard of a lot of people who have lupus, they live a long time. There’s no real issue in their life most of the time, but every once in a while, you hear that somebody that who has lupus has had a stroke. So in the time leading up to your stroke, what was the way that you’re managing those conditions, and did that lapse did that management lapse and therefore cause the stroke?<\/p>\n

Kristy Duncan 8:17
\nI would say that biggest thing about lupus is it’s an inflammatory type of disorder. So anything that you can do to manage inflammation, primarily stress. And there are medications like hydroxychloroquine is a very popular medication used to treat lupus.<\/p>\n

Kristy Duncan 8:43
\nAnd I honestly should have been on blood thinners the whole time aspirin or something because of having the APS on top of the lupus but I wasn’t. So general treatment is trying to keep your stress levels as low as you can and keep your weight under control blood pressure, cholesterol, the normal healthy markers like that. And It hadn’t lapsed at that time.<\/p>\n

Kristy Duncan – Life In The Military<\/h2>\n

Bill Gasiamis 9:18
\nRight. Is it easy to keep stress levels low when your job is in the military?<\/p>\n

Kristy Duncan 9:29
\nWell, that’s what definitely brought it on. I attended a military school and then was active duty in the military. And yes, and what actually brought the lupus on the first flares, what they call it whenever it gets very active is a flu shot, a flu vaccination, so it triggered my immune system and then it wouldn’t turn off.<\/p>\n

Kristy Duncan 9:58
\nSo with the stroke. No my weight had gotten up a little bit, but I was working on getting that back down. But I was fairly active, I did yoga and exercise every day, we were hiking did a lot of that. I’m a certified health coach.<\/p>\n

Kristy Duncan 10:17
\nSo I watch what I eat. And I enjoy eating healthy foods and things of that nature. My cholesterol has never really been a problem, and my blood pressure was usually low and not high. But one of the things when I was researching, the risk of a stroke increases approximately every three years post diagnosis of having lupus at the risk of a blood clot anyway.<\/p>\n

Bill Gasiamis 10:48
\nSo it’s kind of like, as we age and go into the stroke risk category anyway, because as we age it, you know, the older you get, the more risk, you are having an ischemic stroke, more so than a hemorrhagic stroke. Then you’ve also got a condition, which is kind of bringing you into that zone, even more so than somebody who didn’t have the lupus or the antiphospholipid syndrome.<\/p>\n

Bill Gasiamis 11:22
\nSo, you’re gonna be at a very high risk. However, the doctor that you’re seeing, was that your long-term ongoing doctor, the one that you have been visiting for a long time? Or how do you change doctors over the years? And did perhaps the conversation about the level of concern, did it sort of ease as time went on rather than have you guys focusing on?<\/p>\n

Kristy Duncan 11:56
\nI think that good question. I think that being stable for so long without having a Lupus flare, had both in the doctor’s perspective, and in my own had kind of lessened the hypervigilance. But I had literally gone to a rheumatologist the month before I had the stroke.<\/p>\n

Kristy Duncan 12:23
\nAnd I was going through menopause. So I was taking some hormones for that, which I know can sometimes increase the risk. That doctor knew that. And he felt also because I was so stable, and all indicated that I was not in the age group to be of risk taking the hormones, but I shouldn’t have taken them. But I had taken birth control when I was younger with no issue. So again, a little bit of that. Overconfidence from a long period of time with no active disease.<\/p>\n

Bill Gasiamis 13:06
\nYeah, when you did when you took the birth control, were you aware of the stroke risk? It sounds like you are now but did you know at the time that there was a stroke risk, and did you take that knowing that there was a stroke risk?<\/p>\n

Kristy Duncan 13:24
\nI was seeing my rheumatologist who I really loved at that time really enjoyed working with him and he knew and he wasn’t concerned and he was monitoring me I think better than my more recent rheumatologist, my gynecologist also knew and had treated many women with lupus and felt that it was he had me on a formulation that was the lowest risk.<\/p>\n

Bill Gasiamis 13:55
\nSo it sounds like there was a lot of conversation sounds like there was a lot of questions sounds like everything that you needed to do to understand the risk factors was taken into consideration. You made informed decisions. You had a really good run, you didn’t have any conditions.<\/p>\n

Bill Gasiamis 14:15
\nAnd it’s similar to although you had this lupus condition, it’s similar to what other people describe, you know, I was really they’ll tell you, I was really healthy. I didn’t have any issues. I ate well, I exercise, I did all the right things. And then I had a stroke and I don’t know where it came from.<\/p>\n

Bill Gasiamis 14:31
\nAnd it’s usually a sticking point. And I’m not trying to come up with a reason why it happened or anything like that. But I’m just curious about the mindset that’s leading up to your 52nd year. And then it sounds like it was on par, it sounds like it was on the right track.<\/p>\n

Bill Gasiamis 14:49
\nYou guys went about doing most things. And it’s pretty common when you have insurance on your house and you’ve never had your house burned down, you kind of say, well, you know, I’ve been paying insurance for 25 years, do I really need it? Like, it’s a really interesting question that does come up, and and then some people might make the decision that they don’t need it, for example.<\/p>\n

Bill Gasiamis 15:16
\nAnd that’s their decision, but then the protection mechanism goes away, and then you’re kind of at risk of loss, you know, a heavy loss. So that analogy, I hope it kind of gives people an understanding of the mentality of, like, I’m looking for danger, there is no danger, I can let my guard down.<\/p>\n

Kristy Duncan 15:49
\nAnd I also trusted my doctors to keep an eye on it. And I should have been watching it better myself. And that’s part of the reason why I was really interested in being on your show, because I know I’m not the only woman out there with lupus, who will either be faced with similar decisions, or not.<\/p>\n

Kristy Duncan 16:12
\nBut even something as simple as a baby aspirin a day, the risk of taking the aspirin is so low, but the benefits are so high. And I had lost a friend, I worked with the Lupus Foundation and was a support group leader. And I had lost a friend in 2016 with lupus, she had a heart attack.<\/p>\n

Kristy Duncan 16:38
\nAnd she was very young. She was 35, and then I lost another lupus facilitator in 2021, about 10 months before my stroke. She died from lupus complications, not specifically, I wasn’t informed specifically, if it was a stroke or heart attack, but I was definitely at high risk playing Russian roulette, I guess.<\/p>\n

Bill Gasiamis 17:20
\nYeah. And it sounds like you’re being a little bit hard on yourself or you have a few regrets. Is that correct? Is that accurate?<\/p>\n

Kristy Duncan 17:31
\nI’m being mild I’m being well-behaved compared to how I could beat myself up over this. Yes very much so. I was very upset about it a couple of days ago.<\/p>\n

Bill Gasiamis 17:44
\nAnd you’re upset at yourself? Is it you that you get mad at?<\/p>\n

Kristy Duncan 17:52
\nFrustrated at myself at my doctor’s just the whole thing. Yes. That’s something as simple as taking an aspirin a day could have prevented this. Yes. Trusting in the medical facilities so blindly.<\/p>\n

Learning How To Have Self Compassion<\/h2>\n

Bill Gasiamis 18:11
\nYeah. It’s a tough one. I mean, you only gain this knowledge in hindsight, but don’t gain it. Without this crappy situation occurring, this incident occurring, and that’s the thing the shit has to hit the fan before you know it’s happened. And then you can only deal with it once it’s happened. And I would ask people that are going through something similar to you is to have self-compassion for not knowing what you didn’t know, you know, to be your own advocate now, your best advocate now.<\/p>\n

Bill Gasiamis 18:50
\nAnd to try and moving forward, take the role that you now know, may have been the role that would have made your condition potentially stay calm and not have a flare up. And be understanding that you’re not the only one that’s in the situation that you’re in because of lupus.<\/p>\n

Bill Gasiamis 19:20
\nAnd if you were talking to a friend of yours, who has a lupus and had the same situation occurred to them, and they were hard on themselves, how would you speak to them about their own I’m not sure if the right term is self loathing or, you know, how would you go about sort of trying to ease their suffering at that moment?<\/p>\n

Kristy Duncan 19:50
\nI would definitely challenge them to forgive themselves. Like you said you don’t know what you don’t know. sometimes. And again, that’s why I’m hoping that maybe this podcast will reach. And I’m going to share it with the Lupus Foundation in the hopes that it will reach other women and spark some deeper conversations with their doctors of what their risk level is that and is there something that they can do to to mitigate that.<\/p>\n

Bill Gasiamis 20:29
\nI just love that idea. What you’re doing is such an amazing thing, because it’s exactly what’s necessary. I love that what has happened in this situation is you’re automatically thinking of other people. And you’re being the one that in order to raise awareness for other people, you’ve had to go through this thing.<\/p>\n

Bill Gasiamis 20:52
\nIt’s such a paradox that you have to go through something so serious and so life-threatening, but what comes from it is this amazing, need to reach out and ensure the safety of others because you’re wiser for your journey, you know, more about it now than you did beforehand. And the first thing on your mind is, let me reach out to the rest of the girls and let them know what happened to me so that they could be a little more informed, prepared, mitigating more of the risks.<\/p>\n

Bill Gasiamis 21:39
\nI think that’s an amazing thing, that’s fabulous. And I hope that brings you some comfort, and hope that eases you know, that other part of you who’s angry and frustrated, which is I think it’s also absolutely okay to be angry and frustrated at yourself, but it’s just not useful, it doesn’t have an outcome that’s beneficial to you, your condition, and your ongoing journey. However, I appreciate that you’re there, and that’s okay. But I hope that angry person, part of you is eased a little by this other version of you, who is the one that is the compassionate, caring one and thinking of other people.<\/p>\n

Kristy Duncan 22:29
\nIt does help. I became a health coach so that I could help people and I have done some videos about my journey with the stroke on my YouTube channel. And I think it will be an opportunity to leverage my experiences in the future to help others yes. Because the point of the matter is, is we listen more to people who come from a place of understanding than we do from somebody who just doesn’t know what we’re going through.<\/p>\n

Bill Gasiamis 23:18
\nThe doctors tend to not know what we’re going through that is one of the fantastic and strange things, because we never want them to know what we’re going through, because the only way they’re going to know that is to have had a stroke to be in our shoes. And that’s such a terrible way to know what it is that we’re going through.<\/p>\n

Bill Gasiamis 23:41
\nAnd therefore that makes them a little disconnected from what the shell that we live in, feels like inside and how it expresses itself differently on the side where you might have your deficit for me, for example, it’s the left side, I feel completely totally different on the left side as I do to the right side.<\/p>\n

Bill Gasiamis 24:06
\nAnd I had this conversation with a friend of mine just yesterday. And we were talking about how I don’t like exercising, I don’t enjoy the way that it makes me focus on the way that my left side feels when I’m exercising as opposed to how my “normal” right side feels.<\/p>\n

Bill Gasiamis 24:31
\nAnd as a result, I avoid exercise because it has moved on from being exercise and enjoyable to this constant. I’m out of balance, conversation or everything’s not the same conversation. And the only exercise that I do, which I do as much as I can and I love is I ride a bike because with an electric assisted motor in the bike.<\/p>\n

Bill Gasiamis 24:57
\nIt makes me not have that conversation in my head. One where, my leg feels weird when it goes down as I run, or my arm feels strange, as I move it, it makes all of that noise go away. And therefore, I can just move. And try to have a conversation like that with the doctor is near impossible. That’s why I started the podcast because I needed to speak to people who understood what I was saying.<\/p>\n

Bill Gasiamis 25:25
\nSo I can feel understood even though my doctor who was extremely helpful, didn’t understand that part of me. I was okay with that, you start to get to the point where you’re okay with it. And then what I love about your journey so far is then you’ve become your own self-advocate, you’ve taken responsibility for the advocacy part of this situation.<\/p>\n

Bill Gasiamis 25:53
\nAnd you’ve taken it away from the doctors who, quite frankly, if they had to be responsible for every single patient that they had, that’s a responsibility, that’s way too big a burden to carry. And I prefer that asked the stroke survivors, and the lupus warriors and all the people that are going through it, I prefer them to be their own self advocate and to be.<\/p>\n

Bill Gasiamis 26:23
\nSo focused and passionate about finding out what else they can get their doctors over the line with what else they can ask their doctors for help for, because doctors sometimes just don’t realize that you need additional support, they look at the charts, they look at a very brief summary of what’s going on, they may only have 10, or 15 minutes to consult with you. And they’ve got to make all these decisions in that time.<\/p>\n

Bill Gasiamis 26:51
\nAnd I only ever became my own advocate after my first and second bleed, there was no way that I was and I use this word because it’s lack of a better word “intelligent” enough to realize that I needed to take responsibility, and be my own advocate before the stroke, because like you, even though I didn’t have lupus, even though I didn’t have an autoimmune condition, I had 37 years of why am I paying insurance for it’s not necessary, everything’s fine.<\/p>\n

Bill Gasiamis 27:25
\nI could smoke, I can drink, I can eat badly, and I’ll be fine, I’ll go to work and everything will be fine. And it wasn’t and I wasn’t contributing to supporting myself, I was contributing to making myself sicker, more unwell. So I kind of have a similar story to you.<\/p>\n

Bill Gasiamis 27:47
\nEven though I don’t have the diagnosed underlying cause, because I had an undiagnosed underlying cause, sitting in my head, like a time bomb just waiting to go off. And I did everything that I possibly could to make the situation of my head, I made it more likely by every cigarette I took by every alcoholic beverage that I drink, I made it more likely that that thing was going to burst.<\/p>\n

Bill Gasiamis 28:15
\nSo beating up on myself, thankfully, was not something that I wanted to do. And that I felt good about. And it wasn’t useful. And it didn’t achieve anything in helping me my recovery, in fact that got in the way of my recovery. So still a little bit of a rant and hopefully you’re seeing the similarities, even though I wasn’t diagnosed with a condition.<\/p>\n

Dealing With The Physical And Emotional Stress<\/h2>\n

Kristy Duncan 28:51
\nThank you, I can appreciate that. Because we can all look back at decisions that we’ve made in our lives and realize some of them are just really bad. Like I went to a military school that I had no business being at, I didn’t belong there. I wasn’t strong enough physically or emotionally to be in that type of ultra competitive environment.<\/p>\n

Intro 29:18
\nIf you’ve had a stroke, and you’re in recovery, you’ll know what a scary and confusing time it can be. You’re likely to have a lot of questions going through your mind. Like how long will it take to recover? Will I actually recover? What things should I avoid in case I make matters worse, and doctors will explain things but obviously, you’ve never had a stroke before.<\/p>\n

Intro 29:39
\nYou probably don’t know what questions to ask. If this is you, you may be missing out on doing things that could help speed up your recovery. If you’re finding yourself in that situation. Stop worrying and head to recoveryafterstroke.com<\/a> where you can download a guide that will help you.<\/p>\n

Intro 29:57
\nIt’s called seven questions to ask your doctor about your stroke. These seven questions are the ones Bill wished he’d asked when he was recovering from a stroke, they’ll not only help you better understand your condition, they’ll help you take a more active role in your recovery, head to the website now, recoveryafterstroke.com and download the guide, it’s free.<\/p>\n

Kristy Duncan 30:21
\nAnd that’s what started my hyper stressed environment that eventually led to my lupus, the physical and the emotional stresses. Because you’re right, in military, you don’t have a lot of time to de-stress.<\/p>\n

Bill Gasiamis 30:42
\nYeah, that’s a lot to bear. Especially when you’re a young kid, you know, you’re some people are teenagers, when they join the military, others in their 20s, or whatever, it’s a lot to bear you just barely coming out of being in the most oblivious time of your life, you know, when you’re a teenager, which is the best, potentially, and then you go into this other world, which I understand is necessary.<\/p>\n

Bill Gasiamis 31:10
\nAnd it requires people to continue to be a part of, but it’s not for everybody. But how do you know that when I’ll say this, but then take it the wrong way. When you’re so young and dumb, and you haven’t lived and you don’t know about life? How do you know and until you make the wrong decision? You just don’t know.<\/p>\n

Kristy Duncan 31:41
\nRight? And I mean, sometimes you just have to look at why do you make the decisions, but sometimes you can only look back with wisdom on those when you are older. And you see alternatives that you didn’t see at the time.<\/p>\n

Bill Gasiamis 31:58
\nYeah, absolutely. And then you can redirect. And that’s part of our growth is to redirect and make less of the mistakes that we made when we were younger, because we’ve already been there. And we know we don’t need to go down that path. It’s definitely how my life has got calmer and better.<\/p>\n

Bill Gasiamis 32:18
\nAnd I hear about people who are older than me, I’m 48. So I hear about people who are older than me, who say everything’s sort of, in their later years, everything’s chill, they know exactly what they need to do. They know how they enjoy their day, they know what pastimes they’re going to occupy the time with.<\/p>\n

Bill Gasiamis 32:37
\nI think what it sounds like to me is that they’ve very much realized and learned what are the things that they, if they repeat, they won’t enjoy, that won’t be beneficial, that won’t be useful, they won’t be helpful, and they just weed them all out over the years. And then by the time they get to their, you know, seven years or wherever, there’s just nothing but wise decisions and wise choices for the for many of them.<\/p>\n

Bill Gasiamis 33:07
\nAnd I feel like that’s why, you know, these older traditions and these older communities of native people. That’s why they had the elder, who you know, was depicted as being old and gray and wrinkly, and always talking to somebody who was younger than them and sharing their wisdom or giving guidance or whatever it was, I feel like that was lost on me when I was younger.<\/p>\n

Bill Gasiamis 33:43
\nBut as I’ve aged, it is starting to become more apparent to me that although I want to be connected with younger people, I also really need to understand for me what the next 20 or 30 years is going to look like and how I’m going to get to be the wiser elder<\/p>\n

Kristy Duncan 34:04
\nWell, I don’t have children so I’ll be honest, I struggled to relate to really much younger than I am. I can relate to the 20s and the 30s some things that I work with, but I mean, I find it easy to talk to people about anything and everything but to go back to when I was a teenager. I mean, my husband and I’ve talked about this even with music nowadays, I don’t understand modern music in any of the draw that it has, compared to when we were are younger.<\/p>\n

Bill Gasiamis 35:01
\nYeah, it’s like a different language, isn’t it?<\/p>\n

Kristy Duncan 35:05
\nIt is very much so.<\/p>\n

Bill Gasiamis 35:09
\nWell, I’ll give away a little bit of my secrets, I was really heavily and deeply into 90s dance music really deeply in it, and I listened to it now, all the time. Some of it is timeless. So my kids have been able to appreciate it. But then I also listen to a lot of metal like Metallica. Just one example, that’s good enough, because people kind of know then what my taste is like.<\/p>\n

Bill Gasiamis 35:46
\nAnd, then sometimes I find myself listening to classical music, because of its power, and its energy, etc. And then most recently, like you to hear some of that new version of rock, or the new versions of pop, or the new genres that are around, it’s like, literally like they are a different language and my kids one of them the older one played in a band.<\/p>\n

Bill Gasiamis 36:17
\nAnd they played a type of music that they called punk. It was not like the punk that I recognized from the late 70s and early 80s. It was kind of next level. And you actually couldn’t work out the words. But we were forced to go along and, and take him to gigs because he was underage.<\/p>\n

Bill Gasiamis 36:42
\nAnd he couldn’t get into some of the pubs and some of the clubs that his band was playing in. And it was a real drag being there to listen for an hour to the show before him and then perhaps even the show after him while we waited to pick him up.<\/p>\n

Bill Gasiamis 36:58
\nAnd it never kind of took hold it never embedded, it never grew on us we loved being there. Because we enjoyed watching him. But yeah, we couldn’t relate to that. So we found another way to interact with him. And that was just to be there with him in that moment, even though we had no idea what the benefit and what the draw card was.<\/p>\n

Bill Gasiamis 37:29
\nNow that being said, I shouldn’t have judged his music on whether I liked it or not, because there was enough people there to really show that they appreciated the music, and that it was a draw card. And that they did understand that. So it’s like going into a different culture. And just going I’m gonna hang out here like going to France, for example, and saying, I’m just going to hang out here for a little while.<\/p>\n

Bill Gasiamis 37:56
\nAnd I’ll see if I can learn something I don’t know. It’s interesting. And that might be the level of my hanging out with younger people. That’s kind of the extent of it. It’s not more they don’t engage as much with me as perhaps I have. But that’s a cool experience. That’s about all I need. I just need to be able to know what goes on in that world so that if somebody asks me, I can pretend that I know about that world and get a laugh.<\/p>\n

Kristy Duncan 38:38
\nWell in support your son, so I think that’s a good thing.<\/p>\n

Bill Gasiamis 38:42
\nYeah, I think so if it comes from that place, then I think it’s easy to connect with the younger community because if it comes from I’m supporting you even though I don’t understand you, I think they feel supported. And that’s enough. That’s good enough. I’m wondering, with regards to the stroke, how long did it take for you to get to hospital and then released from hospital how long did your hospital stay take and then what were you left with that you have to overcome and recover from?<\/p>\n

Kristy Duncan 39:21
\nWell I don’t remember how long the helicopter ride was. It was pretty quick. And I know it was pretty because it was beautiful fall leaves flying over all of the trees. That was pretty but I was obviously worried but I was also worried about my husband and you know him getting from where we were the two plus hours or so by car to the hospital. And then I was in the hospital I think for about a week and then in rehab for about a month and the hospital was a little challenging, because I was not vaccinated. And that was contentious in the ER.<\/p>\n

Bill Gasiamis 40:09
\nOh, gosh.<\/p>\n

Kristy Duncan 40:14
\nVery contentious.<\/p>\n

Bill Gasiamis 40:18
\nYou weren’t vaccinated for a perfectly good reason as well. So the vaccine had previously caused you a health issue.<\/p>\n

Kristy Duncan 40:29
\nYes one that had been around for a lot longer too<\/p>\n

Bill Gasiamis 40:36
\nI find that so bizarre that you’re that you’re in this life threatening situation. And the biggest concern is whether somebody has been vaccinated at the time. It’s just intense. And how did that go down? What was the conversation like, what, what eventuated<\/p>\n

Kristy Duncan 40:59
\nI see that you’re not vaccinated. That’s correct. Mask, why, while he’s wearing almost Greg called it the Darth Vader mask, because it was like a full black face shield kind of thing. And I said, well, because I, obviously am a blood clot risk. And so then he proceeded to tell me about all of the people with COVID that get blood clots, and, you know, try to shame me into it.<\/p>\n

Kristy Duncan 41:34
\nAnd thankfully, it didn’t work, because I think that would have increased my risk of further strokes. But he really wouldn’t back off until my husband got there and kind of, you know, made it clear that she’s not getting the vaccine. And so then I was in the hospital for about a week.<\/p>\n

Recovery In And Out Of The Hospital<\/h2>\n

Kristy Duncan 42:04
\nThe thing that was interesting is, I also feel like, while I was in the intensive care, or the ER, because of my APS, they told me that I was not a candidate for any type of clot buster. But while I was in the ER, I had full bodily functions, as a matter of fact, they let me get out of bed and walk down the hall to the restroom when I had to go unattended.<\/p>\n

Kristy Duncan 42:38
\nBut then, my blood pressure actually started to drop. So then they did another scan and then that’s when they saw that there was starting to be some brain tissue death. And then that’s when I couldn’t do the finger touches anymore. And then I started to have problems. I couldn’t raise my arm on my left side.<\/p>\n

Kristy Duncan 43:00
\nAnd so then, I went into I was in a rehab facility for about a month. And that was all during the holidays, from the day after Thanksgiving, I believed to the 23rd of December. And my rehab, I have to say, I really appreciate the facility and they did a lot for me and they had me walking with an AFO by the time I left, I did not need a walker, or anything like that.<\/p>\n

Kristy Duncan 43:45
\nBut I still have complete left arm paralysis. While I’ve got a little bit of shoulder, I can shrug a little bit and pull my arm a little bit. And my knee and ankle are very stubborn and resistant. And the challenge that happened was actually after I got out of rehab and was doing outpatient therapy, I did so well during outpatient therapy that they released me very quickly. And I’ve been doing all my rehab on my own from YouTube videos now.<\/p>\n

Kristy Duncan 44:20
\nSo I found some excellent therapists on YouTube, and I’m reading Anat’s book. And what’s very interesting is one of the therapists was using attenuation. One of her principles, he was using that in his video before I even knew what it was from reading the book. But I can see that using those videos and finding therapists and having a variety of different therapists that I’m working with and exercises is actually not a bad thing.<\/p>\n

Kristy Duncan 45:00
\nAnd I think I’m getting, I mean, my left side is definitely getting stronger. But my club as my husband calls my left arm, we deal with a lot of things with humor, I have a very sarcastic sense of humor, so much so that the doctor in the rehab facility asked me if I was always like that, or if it came on after the stroke. I’m like, No, I’ve always been this sarcastic. So that’s helping, but I’ve been pretty much doing everything of that rehabilitation on my own.<\/p>\n

Bill Gasiamis 45:45
\nYeah. With regards to your diet now, and your understanding of the fact that your conditions are inflammatory. And what you need to do is, support them and create an anti-inflammatory state in your body. Do you have a different diet? Is there something that you’re doing that’s changed the way that you consume food and what you might avoid? And what you have included?<\/p>\n

Kristy Duncan 46:19
\nHonestly, no, I lost 30 pounds from my stroke to getting out of rehab. And I’ve lost another two in the last month or so. I haven’t really changed what I eat. And I actually, I’ll be very frank with you. I don’t eat as well as I should I have a bit of a sweet tooth.<\/p>\n

Kristy Duncan 46:44
\nSo I still eat more sweets than I should. I have an occasional adult beverage not frequent. I’ve never been a frequent drinker. And I’ve never smoked. I think the biggest thing that I miss is I can’t do yoga and other types of exercises that I actually enjoyed. And that were very stress relieving to me.<\/p>\n

Bill Gasiamis 47:16
\nSo as a result of the condition that you’re in, you can’t do yoga, because is this spasticity in your muscles? Is that because you can’t get into well, some of those because of your arm, some of those moves won’t be possible?<\/p>\n

Kristy Duncan 47:36
\nRight, I have yet to try a chair yoga I’m looking for some chair yoga, to see if those might work. I’m actually doing a retreat with two of my college roommates in June. And it’s a lot of breath-work, and yoga. But I’m going to do that from a chair because I know I’m not going to be able to get up and down off the floor comfortably.<\/p>\n

Kristy Duncan 48:11
\nI may be able to do it in a limited space. I mean, I have fallen one time and I had to get myself up. So I know I can do it. But it’s not a comfortable type of situation. And with the one arm, it actually puts a lot of stress. I don’t know if you or any other patients have mentioned just about how it puts a lot of stress on the functioning side to make up for it.<\/p>\n

Bill Gasiamis 48:37
\nYeah. For me, it tightens my right side muscles and it gives them it over compensates my right hand side has to overcompensate to kind of keep the left hand side up and upright and not from tipping us over. So there’s always that happening. Were you in active duty at all during your time as a person in the military?<\/p>\n

Kristy Duncan 49:14
\nYes. When the lupus first flared and I had the flu shot, I was active duty. Yes. And as a matter of fact, that was another interesting situation. I was very sick having chest pains and spiking fevers. And basically, they couldn’t figure out what it was. So they just sent me home.<\/p>\n

Kristy Duncan 49:40
\nThey kept sending me home until one time. I just was like I’m not going home until you figure this out. And then they did a chest x-ray. And that’s when they determined I had pericarditis and my heart was grossly enlarged due to the sack around the heart.<\/p>\n

Bill Gasiamis 50:00
\nAnd recently, have you still been involved and employed in the military? Or has that career ended?<\/p>\n

Kristy Duncan 50:09
\nNo I was medically retired after the lupus diagnosis.<\/p>\n

Kristy Duncan’s Mindset While Having A Stroke<\/h2>\n

Bill Gasiamis 50:16
\nOkay. I’m asking because I’m wondering, was your training at all, did that come into play? Did that kick in, when you found yourself in a situation where you’re 52, you’re needing to be medivaced out of the place that you were with your husband? Do you have a mindset, some kind of training that you call on or you recall that you start to go through the motions of or that you apply to this dangerous situation that you’re finding yourself in?<\/p>\n

Kristy Duncan 50:58
\nJust more of general mindfulness and breathing exercises that I had learned from yoga and and other mindfulness type exercises to help with stress management, yes. To the point where I had to when I was in the ER, and my blood pressure started to go down, I had to stop, not allow myself to get overwrought. But I had to stop the deep breathing as much so that my blood pressure would not keep going down.<\/p>\n

Kristy Duncan 51:34
\nBecause then it wasn’t allowing all the capillaries in other areas around the clot to get the blood flow. So I mean, they were literally tilting my bed at one point, putting my head lower, along with giving me medications to raise my blood pressure. But a lot of the mindfulness type exercises and things I had done, I had just were self taught to learn how to just keep stress levels manageable to keep my lupus calm.<\/p>\n

Bill Gasiamis 52:15
\nYeah, well, that’s definitely a great thing to do. Keep it as calm as possible in the most difficult times, especially when you don’t exactly know what’s going on. That’s probably the best thing is just to keep calm and to try and manage your physiological response to this situation that’s happening in your head. I think that’s a great thing. Your husband, how’s he going? How’s he managing this whole journey with you?<\/p>\n

Kristy Duncan 52:43
\nOh, he’s outstanding. I mean, he, he’s taken over. So many things that I used to do, shopping, animal care, taking the animals to the vet. And then just being a positive humor for me, keeping me going. We have this thing where because I do have a tendency to get emotional sometimes. And that is a little bit more post-stroke.<\/p>\n

Kristy Duncan 53:17
\nBut I’ve always been one that would. I mean, I used to tear up watching Little House on the Prairie. So we joke and we call whenever I start getting teary-eyed, we call that either squishing or getting mushy. And he told me I was getting nervous about talking with you.<\/p>\n

Kristy Duncan 53:17
\nAnd he’s like, why are you getting nervous? It’s just a chat. And I said, that’s exactly what he told me. Just chatting over coffee. And he said, Yeah, except you don’t want to be drinking coffee or you have to keep getting up and go in the bathroom. But he’s like, don’t you dare cry. And I’m like, I’m not gonna cry.<\/p>\n

The Pseudobulbar Affect<\/h2>\n

Bill Gasiamis 53:57
\nI’m being mushy, and that I think does come with a territory. I have you heard of the pseudobulbar affect?<\/p>\n

Kristy Duncan 54:12
\nNo.<\/p>\n

Bill Gasiamis 54:13
\nOkay. It is a condition that ails stroke survivors and people who have neurological conditions where uncontrollable crying and or uncontrollable laughter is one of the side effects of having a neurological challenge I went through that and uncontrollable crying would happen at the drop of a hat. And let me tell you if the kitty cat walking down the road tripped over the grass it would be enough to get me crying like a madman just for no reason in the middle of everywhere.<\/p>\n

Bill Gasiamis 54:54
\nI’ve spoken on stage and while in the middle of speaking on stage I find myself bursting into tears. But you know what happens, I thought it was going to be a negative thing. But then I’ve got the audience wrapped around my little finger. And I’ve just sucked them all in into feeling sorry for me into becoming really emotional, you know, they get out of their head, and they connect with their body.<\/p>\n

Bill Gasiamis 55:22
\nAnd it’s a real lovely opportunity to sort of be a man be on stage in front of potentially a few 100 people and cry. And then, instead of that being a negative, it actually works in my favor. And now I own the room. And everybody’s paying attention, everybody’s listening.<\/p>\n

Kristy Duncan 55:44
\nI’m an ugly crier though. So it’s just not a good thing for me.<\/p>\n

Bill Gasiamis 55:53
\nOkay, so that complicates things a little bit, if you’re an ugly crier, but I totally get where you’re going. And the pseudobulbar affect is something that when people hear that, that is a thing, they do feel a little better about it, because I know that some men, and I speak for men, because I’m a man, the sun, men do have an issue with showing emotion and expressing crying.<\/p>\n

Bill Gasiamis 56:20
\nAnd it becomes really challenging for them to find themselves in a situation where they’re being so vulnerable. It’s actually a positive thing. I feel like it’s a release of something that needs to come out that is getting in the way of recovery. So when it happens now, for me, it’s like, well, you know, that’s okay. And I would now probably cry over a Little House on the Prairie. Where I didn’t when was a younger kid watching it, I might cry now. I mean, there’s so many touching moments in that show.<\/p>\n

Kristy Duncan 56:58
\nWell, I’ll have to let them know that it is quite normal. We are still very, more geared towards humor and being funny to help cope with a lot of things. So having animals helps with that. So we’re always finding something to laugh at them about.<\/p>\n

Bill Gasiamis 57:21
\nYeah. And I like the fact that you have humor. And if you can find humor in your situation, I certainly did find humor in my situation, one of the most humorous moments, which was terrifying and humorous, at the same time, was when I was going into hospital to have my last appointment before brain surgery.<\/p>\n

Bill Gasiamis 57:41
\nSo they go in, they check you out. They make sure all your vitals are where they need to be and all that stuff. And then they brought you in for surgery, it was literally going to be three or four days later. And I was in the hospital for probably a maybe a couple of hours. And on the way home, I started to get numbness on my left side, it came on really dramatically more dramatically than it had ever before.<\/p>\n

Bill Gasiamis 57:44
\nMy vision went, and I had a strange sensation on my face that was more dramatic than before. And I was told, and I went back to the ER, and I saw one of the nurses then I said to them, listen, I’ve just been upstairs, I’m getting ready for brain surgery, this kind of stuff. And I’m having a situation and not explaining it to them properly enough. And then not necessarily being certain about my history.<\/p>\n

Bill Gasiamis 58:38
\nThey just taught me to sit down and wait in the emergency room waiting area. So I did, and next to me was sitting a child who was probably autistic. And he had been to the bathroom and he was sort of sitting on the chair right next to me. And we were sharing the elbow rest.<\/p>\n

Bill Gasiamis 59:02
\nAnd his mum asked him, did you go to the toilet? And he said, Yeah. And then she asked him, did you wash your hands? And he didn’t respond and that was enough of a response for the mum to know that he didn’t. And perhaps his hands weren’t dirty in any way. But she made a scene and made a point of it to him.<\/p>\n

Bill Gasiamis 59:33
\nAnd I was holding the same arm chair that he was holding. So immediately when I’m going through the most terrible situation of being really concerned about potentially another bleed happening right there and now all that went away and the only thing I was worried about was did he come out of the toilet with clean hands and do I need to get up and go and wash my hands.<\/p>\n

Bill Gasiamis 59:59
\nIn the most terrible circumstances, the only thing that I was concerned about was whether or not I touched something I didn’t want to have touched. I found humor in that moment later after it happened we were talking about it humorously.<\/p>\n

Bill Gasiamis 1:00:17
\nAnd that just goes to show that you can find something humorous in a situation, even though it’s potentially life threatening, and risky. And who knows what the animals are another thing that I absolutely love to hear people share about because they bring so much comfort and joy to people. How many animals do you have? What type of animals?<\/p>\n

Kristy Duncan 1:00:51
\nMany. We have two cats. We could probably apply for an Animal Rescue because they just show up at our house and we don’t turn them away. But yes, we have too many. And while I was in rehab, my husband would send me pictures of them doing various things to help cheer me up and saying, you know, hurry home mom, and you know, little captions like that.<\/p>\n

Finding Humor In A Terrible Situation – Kristy Duncan<\/h2>\n

Kristy Duncan 1:01:28
\nMy funny stories, I think some of them are to make fun of myself, and some are just yes, they do help with the situation. One of them I laugh about now, but I later found out that if I had actually hit the nurse, it would have been a felony. But I don’t know if you’ve ever had them do the pain response to try to get you?<\/p>\n

Kristy Duncan 1:01:55
\nWell, I, they were doing neurological checks on me like every two hours. And this one nurse came in, and she had the very hard artificial acrylic nails. And she kept pinching the back of my left arm, and I finally had to tell her, I said, you need to stop doing that.<\/p>\n

Kristy Duncan 1:02:14
\nBecause my right arm works, and I’m gonna slap you if you do that to me again. And she, you know, explain why and I said, I appreciate why you’re doing it. But I am telling you, it hurts and you need to stop. And she did, thankfully. I mean, I had bruises on the back of my arm from the sharp little fingernails.<\/p>\n

Bill Gasiamis 1:02:43
\nShe didn’t realize her strength?<\/p>\n

Kristy Duncan 1:02:46
\nRight. And another time was just the funny series of events when my husband was gone one day, and it was just, I just realized how funny it was when I looked back at it. So I recorded a little audio and I shared it with some of my work friends, to kind of bring them up to speed and to share a little bit of, you know, a day in the life and I call it at lunchtime adventures.<\/p>\n

Kristy Duncan 1:03:16
\nAnd they all just thought it was hilarious. Then another time. I fell underneath the house. And it was very minor. But I just kind of I did another recording of it and just kind of walked him through in slow motion, how it happens, like the placement of my legs and how I was leaning forward in a lunge. And my foot slipped and then I went down on my hands and I was wearing a raincoat.<\/p>\n

Kristy Duncan 1:03:52
\nSo then my elbow slipped and then I’m literally facedown in the mulch underneath the house, hoping that none of the cats had used the bathroom in the mulch so that I didn’t have my face. And I mean, I just had to laugh about it. And just I’m laying there, my face in the mulch, both arms straight eagle, just laying there. And all I got was a tiny little scratch from my glasses being pushed up on my forehead. So very, very blessed but just have to look at it from a humorous perspective.<\/p>\n

Bill Gasiamis 1:03:53
\nAbsolutely. Even nine years after my first incident, the falling over thing is something that happens to me. So this is a real dramatic situation. We’ve gone for a drive to see some family across one of the borders. I live in Victoria and we went to New South Wales, and it’s 1000 kilometers. And we drove there. We saw them and on the way back we’re driving and I’m looking in the rear vision mirror up, and I see this car with a trailer on the back of it.<\/p>\n

Bill Gasiamis 1:05:04
\nIt rolled, it tumbled and tumbled and tumbled and stopped on the freeway pulled over and expected to save the worst thing when I went went to that car. So I’ve run to the car, I’ve got there, and there’s no one in the car. And we were doing 100 kilometers an hour at the time, which is 60 mile. And the guy whose car, it was who rolled in the time that I’ve stopped my car, we’re talking about not even 30 seconds.<\/p>\n

Bill Gasiamis 1:05:49
\nAnd the time that I ran back to his car to check up on him and everyone else was stopping as well. He was already on the phone calling a friend of his saying, I’ve stuffed up the car, come and get us out of here, you know, come and help us. And then I was looking around for a passenger was there any passengers and there was a passenger. And the passenger was telling me everything’s cool, we’re all right, nothing to worry about.<\/p>\n

Bill Gasiamis 1:06:19
\nAnd I’m like, Should I bring an ambulance should I call for help. No we’re good, we’re all good. And it was just absolutely shocking. And it was the exact opposite to what I wanted to see. And it was amazing, it was fantastic. So it literally took me about another two minutes after first approaching them to head towards my car. So now these guys are in a car, the car has rolled it is totaled, they are out of the car walking and talking, telling everyone to calm down and keeping us under control.<\/p>\n

Bill Gasiamis 1:06:54
\nAnd I’ve walked past the scene of the accident. And I’ve gone to get off the grass onto the road to go into my driver’s seat. And I’ve tripped over and I’ve fallen on my face. And I was wearing sunglasses and I smashed them. And my wife who was looking for me to try and work out is everything okay? Because I asked her not to get out of the car to make sure everything is okay.<\/p>\n

Bill Gasiamis 1:07:22
\nThen immediately became worried about why I was on the ground face down, and why I had scratches on my face. And all I could do was laugh about it. I said to her, those guys are all right. But I think I might need to go to the hospital. I didn’t need to go to the hospital. But I did crack my head on the ground when I hit the ground.<\/p>\n

Bill Gasiamis 1:07:44
\nIt’s like it still happens to me nine years after the initial incident, the left side didn’t realize that I had stepped off of the off of the grass onto the road. And it kind of wanted to stay where it was. And as a result of that, I stumbled and fell broke my glasses, scratched up my face and was the most injured person at the scene. And those guys were in a rolled car and didn’t get it. But that’s the way it goes sometimes.<\/p>\n

Kristy Duncan 1:08:19
\nWell, I was just excited to hear you say that you ran. I never enjoyed running when I was in the military. But I was in the kitchen making tea or something the other day and just told myself one of these days, I’m going to do a 5k again. And if you had asked me that this time last year, now I still would have been at strokeville two years ago, I never would have I’m like why would I ever want to run a 5k and now it’s because I can and I want to.<\/p>\n

Bill Gasiamis 1:08:56
\nI love it. You should do it. Now a friend of mine I interviewed very early on in the series, I’ll share that particular interview. Her name is Donna Campisi. And she has a foot drop and she ran a proper marathon. She is trained and trained and trained. And she overcame that challenge ran 40 kilometres. With foot drop she trained with it. She got personal trainers and everything.<\/p>\n

Bill Gasiamis 1:09:35
\nAnd I interviewed her way way back at the beginning before the podcast was called the recovery after stroke podcast for episode 28 and the episodes called running after stroke with Donna Campisi. And let me tell you, the amount of people that I’ve heard, who have overcome really dramatic deficits who have been able to complete marathons or half marathons or do some crazy things that I never would have done before the stroke they’re doing after the stroke, I think it’s amazing.<\/p>\n

Dealing With Post-Stroke Deficits<\/h2>\n

Bill Gasiamis 1:10:10
\nAnd it took me a couple of years before I felt comfortable to start going back to the gym and running on the treadmill. Because I can’t, even though I can run to my car, I’m at risk of falling out because exactly what happened to me during that particular time seeing if those people needed help, because my leg doesn’t give me the same feedback as the right leg, I’m at risk of hyper flexing or overextending my knee.<\/p>\n

Bill Gasiamis 1:10:48
\nAnd also my leg hits the ground a lot harder, so it doesn’t hit it nice and smoothly and subtly like my right leg, and it kind of just jars all the time. And I feel like it would be impacting my hips negatively, etc. So it took about, I would say a few years. And then the first time I went back to the gym to run, it was so uncomfortable. And it was so man, it was weird.<\/p>\n

Bill Gasiamis 1:11:25
\nI can’t explain I didn’t really enjoy it, my leg would fatigue far quicker, say my right side wants to keep going for kilometers and kilometers and my left sides going, I’m done. It’s a few 100 meters. And I’m done. I’m not I don’t want to go any further. So it’s a complete mind struggle to continue to make my leg do the do the task to run. So when I was in therapy, and my physical therapist asked me what was one of my goals, I said to him to run.<\/p>\n

Bill Gasiamis 1:11:59
\nAnd he was like, okay, cool, do that. Do you want to run marathons? Or what type of running do you want to do. And I said, I just want to be able to run across the road in case of cars coming. And it’s unsafe, and I need to get off there. That’s it. If I can do that, I’ll be wrapped. So that’s what we trained for. That’s what I did and overcame.<\/p>\n

Bill Gasiamis 1:12:18
\nAnd now I can almost run across the road, so to speak without having to think about the sensation differences. If it’s a short road and a short distance. It’s too short for me to go into the overthinking pattern. But if somebody says to me, let’s go for a run around the block or down to the park, it’ll be a no for me, I’ll I’ll ride my bike, you can run and we’ll do that. We’ll do it like that.<\/p>\n

Kristy Duncan 1:12:48
\nYes, I enjoy hiking much more than I ever did running. And I don’t think that was more, I can’t do it now and I want to do it. So that kind of thing. But I’ll be glad when I can just wear normal shoes again, I have to wear a large hard plastic AFO because my ankle rolls on my left side. So I started out with just a drop foot AFO and that wasn’t enough. So I wear a size eight on my right foot and I have a size 10 on my left to fit the AFO in there<\/p>\n

Bill Gasiamis 1:13:38
\nSo just the size difference in the two shoes would make it a little bit odd as well. Because of the amount of space that the shoe takes up compared to the amount of space that the right shoe takes up.<\/p>\n

Kristy Duncan 1:13:55
\nPotentially, I mean I can walk fine around the house, except at night I don’t use a cane or anything. When I go out I use actually a hiking walking stick because I found that that neutral position is gentler on my right hand and wrist because all my fingers have like trigger finger now and the tendons are tight and it hurts my wrist and it all the way up into the shoulder so I find that when I go out in public that the stick is much easier on my arm<\/p>\n

Bill Gasiamis 1:14:38
\nYeah. The right tools are really important in this situation and you can make things worse by using the wrong tools. I am still a little bit amazed and shocked in the fact that a AFOs are still such, the technology still seems really old.<\/p>\n

Kristy Duncan 1:15:12
\nRudimentary, almost for the hard plastic with just a little bit of a hinge. Yes.<\/p>\n

Bill Gasiamis 1:15:20
\nThis day and age, I find that a bit strange that the technology hasn’t moved. And there isn’t some Silicon Valley whiz bang TECHO guy going, we need to change this part of physical rehabilitation, and make it better and more efficient and thinner and stronger and more flexible or something, I don’t know, I think it’s a bit weird that we’re still in that situation with AFOs. But at least there is something that does help.<\/p>\n

Bill Gasiamis 1:15:54
\nAnd it does help a lot of people. I’ve also come across a few stroke survivors who have had a AFOs and thought that the AFO was getting in the way of the recovery of the leg. And then they’ve decided that somehow they were going to remove the AFO and then go about rehabilitation without it. Some, I imagine with more success than others.<\/p>\n

Bill Gasiamis 1:16:25
\nBut that’s another interesting mindset shift and change that they had, which was perhaps this thing, which is technically supposed to be helping me is actually decreasing the recovery of the foot drop, and not making it and training of the foot not to recover perhaps. So different things.<\/p>\n

Kristy Duncan 1:16:49
\nThat is interesting. I am, I make myself walk a few steps without it every day. And even just to stand up on the side of the bed without it to get the feedback through the bottom of the foot. Yes, and sometimes if I’m really feeling daring, I’ll walk all the way into the bathroom without it because I can hold on to things very carefully. Because my ankle, it rolls very badly. And I’ve just found a video about how to stop the ankle rolling because of the tightness in the calf and the spasticity. So I’m going to start working on that too.<\/p>\n

Bill Gasiamis 1:17:39
\nFantastic. Well, Kristy, I really appreciate you reaching out to be on the podcast, I love why you did it, why you’re doing it. I love that you’re thinking of other people, and that you’d like to raise some awareness in the lupus community. And I wish you well in your ongoing recovery. And I want to offer you some hope and tell you that it’s early days in your recovery. And I think there’s a lot more recovery to go.<\/p>\n

Bill Gasiamis 1:18:10
\nAnd I feel like with your attitude of a little bit of laughter, a little bit of self deprecating humor, and all the sarcasm and all the stuff that you need to do, I think it’s going to be really helpful as you go forward and continue to improve and get better. Thanks so much for being on the podcast.<\/p>\n

Kristy Duncan 1:18:35
\nThank you very much. I’ve enjoyed it. And I enjoy all your other podcasts. Thank you very much.<\/p>\n

Bill Gasiamis 1:18:40
\nWell, thank you for joining us on today’s episode to learn more about my guests, including links to their social media and other pages. And to download a full transcript of the entire interview, please go to recoveryafterstroke.com\/episodes<\/a>. If you’d like to support this podcast, the best way to do it is leave a five star review and a few words about what the show means to you on iTunes, and Spotify.<\/p>\n

Bill Gasiamis 1:19:05
\nIf you’re watching on YouTube, comment below the video, like the episode and hit the notifications bell to get notifications of future episodes and subscribe to the show. These things make it possible for the algorithm or nominees on all these networks to assume or to believe or to think that the show is worth putting in front of a whole bunch of other people. Every time you do that, it gets spread to more and more people who need this type of content.<\/p>\n

Bill Gasiamis 1:19:40
\nPeople like Naomi, who don’t know they need this content until something happens and they have nowhere else to turn initially. So I would really appreciate it if you interacted with the episodes as much as possible wherever you possibly can. Also by sharing the show with family and friends on social media, it will make it possible for those people who may need this type of content to find it easier.<\/p>\n

Bill Gasiamis 1:20:08
\nAnd that might make a massive difference to someone that’s on the road to recovery after their own experience with stroke, it may also make a difference to their loved ones who are supporting them and trying to get them better. If you are a stroke survivor with a story to share about your experience, come and join me on the show. Interviews are not scripted, you do not have to plan for them. All you need to do to qualify is to be a stroke survivor, or care for someone who is a stroke survivor.<\/p>\n

Bill Gasiamis 1:20:36
\nOr you’re one of the fabulous people that help other stroke survivors. Go to recoveryafterstroke.com\/contact<\/a>, fill out the contact form and as soon as I receive it, I will respond with more details on how you can choose a time that works for you and me to meet over zoom. Thanks again for being here. I truly appreciate it. Thanks for listening and see you on the next episode.<\/p>\n

Intro 1:21:02
\nImportantly, we present many podcasts designed to give you an insight and understanding into the experiences of other individuals opinions and treatment protocols discussed during any podcasts are the individual’s own experience and we do not necessarily share the same opinion nor do we recommend any treatment protocol discussed all content on this website at any length blog, podcast or video material controlled this website or content is created and produced for informational purposes only and is largely based on the personal experience of Bill Gasiamis.<\/p>\n

Intro 1:21:32
\nThe content is intended to complement your medical treatment and support healing. It is not intended to be a substitute for professional medical advice and should not be relied on as health advice the information is general and may not be suitable for your personal injuries, circumstances or health objectives. Do not use our content as a standalone resource to diagnose treat, cure or prevent any disease for therapeutic purposes or as a substitute for the advice of a health professional.<\/p>\n

Intro 1:21:57
\nNever delay seeking advice or disregard the advice of a medical professional, your doctor or your rehabilitation program based on our content if you have any questions or concerns about your health or medical condition, please seek guidance from a doctor or other medical professional if you are experiencing a health emergency or think you might be call 000 zero if in Australia or your local emergency number immediately for emergency assistance or go to the nearest hospital emergency department.<\/p>\n

Intro 1:22:21
\nMedical information changes constantly. While we aim to provide current quality information in our content. We did not provide any guarantees and assume no legal liability or responsibility for the accuracy, currency or completeness of the content. If you choose to rely on any information within our content, you do so solely at your own risk. We are careful with links we provide however third-party links from our website are followed at your own risk and we are not responsible for any information you find there.<\/p>\n

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