Kevin (00:01):

Welcome to the LEMS Aware podcast. We've been waiting for you. My name is Kevin Freiert and I will be your host. Lambert Eaton Myasthenic syndrome, also known as LEMS, is a rare neuromuscular disease that can have a profound effect on a person's mobility and quality of life. LEMS Aware was created to deliver relevant information, resources, and connections to patients and caregivers who may be living with or affected by LEMS. The LEMS Aware podcast lets you hear from people in tLEMS community on topics that matter to you.

Welcome back to the LEMS Aware Podcast. We are so glad you're here again. Today we are speaking with Connor, a native of Utah. Connor is the first LEMS guest we have had who has young children who he is raising with his wife. As you can imagine, this can be very challenging. Welcome Connor. Can you tell us a little bit about yourself and your family?

Connor (01:12):

Absolutely. Thanks Kevin. Thanks for having me on the podcast. I, yeah, as you said, I'm, I'm a native of Utah, for better, for worse. I actually love it out here. You know, we're famous for the snow and I think we're famous for the sunsets. The sunsets are just spectacular. I have a beautiful family. I have a, a superhero wife who I'd say, you know, is a mix between Captain Marvel and Miss Marvel and a mix, because she's got Captain Marvel's abilities, but she's from South Asia, she's from India, so she's like Miss Marvel, and we're a huge, uh, huge superhero family in our, in, in this household. I've got a, I've got a daughter who's two, and she's a riot and a handful. She's, she's a redhead. We don't know how that happened. And, um, a a son who's five, almost six, and and another son who's, who's eight years old. So yeah, you're right. We have a full household here with, with some young kids.

Kevin (02:16):

So when did you and your wife get married? And I didn't realize she was from, from India, So did, how did you meet?

Connor (02:24):

You know, we always say that we met in Spain, which is, which is mostly true. Uh, we, we were both attending the University of Utah, had never met, and, and did a study abroad in Spain and, and met in the class in Oviedo, Spain and in northern Spain in 2006, and became, you know, good friends. You know, I'm, I'm a big soccer fan, and the World Cup was going on, and my wife, she kind of became a part of the, the crew. She'd come and watch all the soccer games with us and, and we hit it off and, you know, so kind of the rest is history.

Kevin (03:02):

Wow, that's amazing. You had to go halfway around the world to meet someone who was probably in your classes already, um, <laugh> or at least walking around the same campus. Before you had LEMS, you know, can you describe what your lifestyle was like? What did you like to do as a kid and as you, as you got a bit older?

Connor (03:23):

I always like to say that I had, I had severe FOMO when I was little, fear of missing out. Um, you know, I, I was, I was certainly not the type, though sometimes I regret, it was not the type to curl up with a book and, and read for hours. Uh, I always wanted to be doing something. I always wanted to be outside, whether it was riding my bike, rollerblading, skateboarding, playing soccer, football, basketball. You know, I just, I just wanted to be out and about and I didn't want to miss any, you know, any daylight. And that's kind of continued. Um, you know, throughout my life I've been a very active person. You know, I, I, I put a lot of time into, into skiing. I was on a ski team throughout high school and continued to ski avidly through, through undergrad and, you know, loved to rock climb and play soccer and, and skateboard and travel. So, you know, I've, I've, my whole life I've been kind of a, a go go go type of person.

Kevin (04:25):

So what was your best ski event?

Connor (04:27):

I think the giant slalom GS. Yeah, that one was the one I competed in most. I think I had the most fun in, in the slalom race, which is the one that with a lot of turns, it's very, very quick turns, man. I had, I had fun in the speed events as well, like the super g uh, but I think giant slalom was, was kind of my bread and butter.

Kevin (04:49):

Yeah, a little bit, little bit less choppy. Um, you can, you can get some speed up there, but you're not, not doing the scary downhill stuff. And what do you do as a profession?

Connor (05:01):

I'm still trying to figure that out a little bit. Uh, I've, uh, I started out finishing undergrad going into grad school where I, where I studied international relations and worked in Washington DC in sort of the international development community for a number of years before deciding to make a switch and, and coming back to Utah and, and going to law school. And currently I'm, I'm a lawyer and, uh, I practice, uh, litigation here in, in Salt Lake City, Utah. But who knows, you know, I feel like these days, um, we're always sort of reinventing ourselves and, and learning, you know, new skills that can be transformed into, you know, all sorts of new opportunities. So right now, I'm, I'm, I'm on the part of the journey where, where I'm being a lawyer,

Kevin (05:55):

Just like your ski racing, you know, you're going to keep pivoting and, and that's what you have to do. And that's what careers look like nowadays. Um, you just go uphill usually. Tell me you've got this active lifestyle, what sounds like a busy and, and constantly changing career and, and that, that's always exciting. When did you first notice any symptoms and what were they?

Connor (06:19):

I, I can really pin it down to a week in the summer in July of 2015. And, and I think I can do this because I mean, if you ask my wife, I was playing soccer way too much, but I was playing, I was playing soccer a lot and living in Washington, DC and from one week to the next, I just kind of felt like all of a sudden my, I was wearing like 10 pound, 20 pound ankle weights on both of my legs. And it was just the most bizarre thing for me. And, and I didn't know what was going on. And, and so it was, you know, it was such a, it, it, it, to me, it wasn't something subtle that sort of transitioned it was really almost like a punch in the gut that I noticed immediately.

Kevin (07:09):

Yeah. So that's different than just, you're playing a lot of soccer and you overwork yourself and eventually your body starts saying, slow down. This was just from one week to the next, you said, so that, that would be a punch in the gut. Did your teammates and the other people around you notice?

Connor (07:26):

No, I don't, I don't think so. You know, I think I subbed myself out more often than I normally would. And I, and I don't think that I really noticed it at home at that point in time. It was really, you know, just when I was, you know, trying to run around a field, trying to chase a ball around.

Kevin (07:45):

That's actually very interesting. What you were experiencing versus what people saw you experiencing. It probably was a subtle change to them in any performance, if anything, subtle change, subbing yourself out. But to you it was like, what's going on here? So how did this all unfold then? How did you find out that it was LEMS?

Connor (08:08):

Yeah. Um, and I think this is the case for, for a lot of people who have LEMS as a sort of a lifelong partner. Uh, it was, it was a bit of a journey, You know, initially, like you said, I thought I was kind of fatigued, you know, something, something was up. I, I took a break. I tried to make sure that I was eating well, getting enough, you know, getting enough vitamins and minerals and proteins and such. Um, and, but it, it didn't seem to go away. Um, I, I subsequently thought, you know, having been, uh, diagnosed with hypothyroidism, um, in 2008 that maybe my thyroid was acting up. And so, you know, went and scheduled appointments with, uh, with a primary care doctor to get my thyroid tested and see what was going on there. And, you know, the numbers came back good, you know, and then they have been good since, since 2008.

Connor (09:11):

So nothing was, nothing was wrong on that front. And so I, I wasn't exactly quite sure, you know, what, what to make of it. I eventually just chalked it up to getting older, <laugh> starting to, starting to age, getting into my, uh, I guess early thirties at that point. And, uh, tried to muscle through it, which was actually probably a mistake because not long after that, I was playing soccer and took a, took a wrong step and, and twisted my foot and, and broke, uh, the fifth metatarsal in my right foot, which, uh, which then led to a whole host of other challenges.

Kevin (09:59):

Injuries can do that and, and knock you back. Did that fact distract you from, Gee, there's something going on here, or did it highlight it or emphasize it?

Connor (10:11):

I, I think it totally distracted me, which initially I thought was going to be easy. You know, I remember having friends with like a broken wrist, and they're in a cast for six weeks and, and, and then they're done. And the bones, you know, supposedly stronger than it was before. Well, I come to find out that a bone in your foot gets a lot less blood flow than a bone in your arm, and it's going to take a lot longer. And so I was in a cast all the way up to my, above my calf on crutches for about three and a half, four months, and then in a boot for another couple months. So it wa <laugh>, it was an arduous, arduous journey on crutches, trying to navigate subway systems in Washington, DC and, and walk around to, to work and, and, and all that kind of jazz.

Connor (11:00):

So it, it was it was a long process, um, you know, made it, made it through, and then, um, did all my, my rehab, tried to follow the doctor's orders there, um, and a month out and, and walking around and, and running around after a green light, broke the darn bone again, <laugh> in almost the same spot, at which point, uh, the doctor said, We've got to fix this with surgery. And stuck a pin in there. And I started the, you know, the boot and the crutches and rehab process all over again. So it was, it was about a, a full year, over a year actually, between the time when I started feeling heavy legs and the time when I was, you know, out of, out of foot recovery when I could start moving around again and, and really have access to my, you know, my feet and my legs like I normally did.

Kevin (12:01):

Okay. So you're, you're going along this journey gets a little interrupted, or you weren't paying attention to it, but then what happened that, that started leading you to thinking about LEMS or even considering it

Connor (12:16):

At, at that point? Um, we had just moved back to Utah and I was preparing for law school, and I, you know, was able to, to walk around again. And I just kind of noticed that, boy, you know, stairs were a, a little bit more difficult than they used to be. And, and initially I kind of chalked that up to, you know, just not being on, you know, not using my right leg for a long time and just being kind of weak, but it persisted, you know? And, and I, and I just kind of got busy and wasn't able to really get active again and, and, and play sports for, for a while. Um, but eventually I tried and I noticed that just my, my body just wasn't, I still felt like I had those ankle weights on. It just wasn't moving the way I normally thought it would, even if, you know, even if I did, uh, didn't have the right sort of muscle strength, it still wasn't moving the right way.

Connor (13:21):

So, you know, it, it became, became a point of frustration for me and I think almost a, a, a difficult issue started creeping with my family because I was just less motivated to, to move around and, and do stuff that, you know, I needed to do. And, you know, I, I think I started to, to feel like it was, you know, some sort of psychological issue that, you know, I was having some sort of performance anxiety or something was just prohibiting me from, from accessing, you know, the, the potential that I, that I had, or I used to have, this physical potential. And, you know, I remember looking into and, and reading about, you know, what, you know, performance, anxiety, how to cope, you know, what to do, meditation and all, you know, all these other things to help calm myself down, you know, which, which I think are, are helpful generally, but it just didn't seem to be affecting my, you know, my ability to move around and run around.

Connor (14:29):

You know, by this point, another, another year and a half has gone by and I'm in law school, and, uh, I remember one, one particular day, you know, I was, I was kind of burned out from schoolwork and I wanted to go burn off some steam, run off some steam. So I went to go play some pick up soccer with some guys down the street, and I played for about 10 minutes and I just couldn't do it. I just, I just felt like every time I was going to try and run fast, I was just going to fall in my face <laugh>. So, so I kind of packed up my stuff frustrated and, and you know, sort of self-loathing and, and, uh, went home and my dad happened to be there, and I just kind of started complaining to him just saying, and I don't know what it is.

Connor (15:18):

I mean, I got these heavy legs, it feels like there's weights on him. My mouth is always dry. I'm drinking water all the time, but it's still dry. I just, I don't know what's wrong with me. And I just wasn't, you know, wasn't really asking for his help, but I was just venting, um, venting to him and, and just complaining, you know, because I was frustrated. And then just kind of let it go and went about the rest of my day, you know, finished my work, hung out with the kids, had dinner and stuff. And the next morning, um, while I was in, in class, I got an email from my dad with, uh, a link to, you know, some sort of medical page and it said, LEMS. And I was like, What the heck is this? You know? And, and he said, I don't, I don't know, you know, I don't know what is going on with you, but when you were complaining last night, I decided to dig into this a little bit, and you keep talking about your heavy legs and your dry mouth, and these, this seems to be two major indicators of this, you know, this rare condition called LEMS.

Connor (16:25):

And so you should probably get an appointment with a neurologist.

Kevin (16:30):

So you, you went and got an appointment, right? The next day you were able to get no neurologist and, uh, and, and get it all sorted out.

Connor (16:38):

That's right. Yeah. The next day I was just walked right in and, and the neurologist opened the door and said, Come on in. No, sadly, we know that's not the case. Um, um, you know, I mean, we're certainly lucky to have access to neurologists, but I, I, I called, um, you know, up, uh, the neurology department that was in my insurance network, and, and they asked me if I was a new patient and I said, yes. And, and, and they said, Okay, next available spot is six months from now. I was like, Oh, okay, well get me on there and let me know if there's any cancellation. So, so I get on the list, you know, and I, I still, I try not to, try not to put too much thought into this because, you know, there's, there's never, you know, the odds of, you know, self diagnosing something like this are usually pretty small.

Connor (17:28):

So I try not to worry about it and, you know, just kind of went about my days and eventually the appointment came and boy, it was, it just seemed to happen so quick. <laugh>, you know, they, I got in there, you know, they checked my reflexes. They said, Oh, wow, you know, your reflexes aren't very good. And, and they did some other strength tests. Um, with me being young was probably, you know, maybe not quite as definitive, but then, you know, they, I did the, um, you know, the electro test on my, on stimulation test on my, on my, um, nerves. And sure enough, you know, within, you know, within an hour they had said, You've got Lambert Eaton Myasthenic Syndrome. And you know, I at that point, you know, obviously really not knowing what that meant, I did certainly have some relief, you know, because I, I thought I was going crazy, <laugh>. I didn't know what was going on.

Kevin (18:38):

Well, I was gonna ask what was the, the impact of one within an hour they diagnosed it, that, that's a shock, you know, that usually takes a little more time for, for doctors to figure out the mysteries. But then what was the change in your mindset from where you were, you used the word self-loathing before and now relief. How did, just knowing what it was change the way you were thinking about life?

Connor (19:06):

I, I didn't really expect it to have a big change, but it did, you know, living in limbo. I, you know, I, I, it was bothersome. Um, but I, I didn't realize how much of an impact it had on, on me, you know, just emotionally and, and because of that emotional impact physically, you know, physically draining. And, and once I got that diagnosis, it really did feel like a weight was taken off of my shoulders. You know, I, I, I, I realized I, I wasn't crazy <laugh>, uh, you know, I wasn't having some, you know, some, some episode that was preventing me from, from using my body. It was my body that was preventing me from using my body, provided some certainty. Um, even though I had no idea, you know, what LEMS was, what to expect, what, what kind of journey I would, I would go on afterwards.

Connor (19:57):

Um, I was, I was relieved to know that there was something and that, you know, to an extent there was a path for me and that other people had been on this path and, and are on this path and that I wasn't alone. Um, and I was really lucky, I think, given the fact that LEMS is, is a rare condition to, to go to a, a, a neurology department that has treated a handful of LEMS patients for over 20 years. So that was, you know, that was in their, in their be in their bucket of, of experience and expertise. So I think that's why, you know, I was, I was, they were quick to pin pinpoint it.

Kevin (20:41):

You must realize how fortunate you are that that was the case, that you happened to be at a neurology department that had seen this before, Cause most neurology departments have not, um, this would be something way on the fringes of what they do that's remarkable. And it explains the rapid diagnosis too. They knew what they were seeing and what to look for, you know, through their, their diagnostic, uh, algorithms. So we talked a lot about how active you were. Now, now that you know it's there, it's, it is your body that's, that's holding you back. It's not, it's not your mind. How has it impacted your activities now? What are your activities like now?

Connor (21:24):

Oh, it's been, you know, it's, it's been a, an adapting and evolving, uh, sort of reality that I've been, um, living with since, really since 2015. Which, you know, in, in hindsight, you know, maybe having these two, you know, episodes breaking my, uh, fifth metatarsal on my right foot were helpful. And, and to the, to the extent that had it been something that was just LEMS, you know, and cold Turkey stopped doing all activities, you know, I think I would've been extremely depressed. Um, and it would've been, you know, a huge, huge, huge blow to me having going through recovery and having, you know, broken bone kind of helped me, um, put things into perspective and, and sort of slow down, um, all, all of the, the various activities that I, that I was doing before. So it, I think thankfully it was kind of a, a transition, um, away from, from being, and, and I don't want to say completely away, but just, um, you know, from going to, from going from sort of full speed ahead, you know, go play soccer, let's go rock climbing, you know, let's go ride bikes for a long time to let's find the right time to do an activity that you like and try and do it to the, to the best of, of my ability.

Connor (22:54):

Now, I'll say that it's, it's still tough. It's still, it's still really, really tough and, and frustrating at times because, you know, I still now I still try and, you know, every once in a while get out on my bike and, and, and play soccer and, and I can do it, um, you know, not to the level that I once was, but, and I, I have to be, I have to be very deliberate about it, and, and it's, and I have to work with myself and my expectations kind of every day. You know, I make some headway here and some headway there, and then maybe take a few steps back and get frustrated. But I think overall I'm making progress.

Kevin (23:36):

It sounds like you need to budget your energy, you know, as you were talking about it, you, you kind of have a plan for the day and try to stay in that plan, budgeting your energy and make, make the choices when you're going to go play soccer or ride your bike.

Connor (23:53):

I think you're absolutely right. I mean, that, that, that's a really good analogy. It is. You know, I've, you have a, I'm not sure about, you know, all people with LEMS, but that's certainly my experience. You have to prioritize where you put that. And sometimes that's just going to the normal day to day activities, hanging out with the family, playing with the kids, cleaning up, doing your work, you know, that kind of stuff. And then other days you have to kind of sacrifice one of one of those things or, or hold back a little bit so that you can expend more energy on, on, on something that you like to doing outside of that.

Kevin (24:32):

Wow. So thinking about this from your family's perspective, you know, what, what's dad doing today? Is he playing soccer or are we going for a walk together or, or hanging out here doing Legos? How do you explain LEMS to, to kids that are two, six and eight?

Connor (24:51):

Well, yeah, that's a, that's the million dollar question, Kevin. I think, um, I don't know. And we haven't found a good way to do that yet and in our family, um, our, our kids know, you know, that dad has to take medicine, you know, certain times they know his medicine, that word, but we haven't really dove into, you know, what, what LEMS is, you know, how it impacts our family and it certainly impacts them. And so, you know, at some point soon we're, it's important for us to have that family conversation, but, but it's, it's, it's tough. And it's been, I think, you know, I was diagnosed in late 2018, so, you know, not quite four years ago. I'm working, I'm on my way to sort of understanding my journey. There's been some ups and downs throughout that journey, but, um, I'm getting a better understanding.

Connor (26:00):

But, you know, it's also, it's not just me. And, uh, a smart man once told me that, uh, you know, diagnoses like this are often have more of an impact on, on the wife rather than on, you know, the person with the spouse or the significant other, or family member other than the person with the, the diagnosis and the condition. And so, boy, you know, I think, I think that rings true, you know, so, so, so much. Um, I say my wife is a superhero. She's absolutely a superhero because not only does she have to deal with, with my, you know, my complaints or, you know, sometimes my frustrations and just my, you know, physical limitations, but she has no control over, over my, um, my condition. She has, she doesn't really under, she can't really understand, you know, the physical implications that has on me. And, and I do have some control. I do have some ability to say, Okay, I'm going to wake up today and whether or not, you know, LEMS does x, you know, I'm, I can respond in, in this way. And, and the, the people around you really, really can't do that, you know? So it's tough. It's tough for them.

Kevin (27:25):

Just like you had to wrestle with whether this was something that was going on in your mind psychologically, or whether it was physical. I know that in any relationship when someone kind of checks out and it's like, Oh, well you wanted to do that and it's like, this is different. It's a physical, I cannot do that. And it's got to be really hard on your wife to, to overcome just that sort of, you know, marriage tension that's always there, exacerbated like this. How did, how do you guys deal with it?

Connor (28:01):

Again, that's, you know, that's the, that's another, maybe that's the 10 million question, right? There's, I, you know, we're, we're right in the thick of it, Kevin, where it's a, it's a day by day process, boy. And, and, and you'll know, you know, and most people know, whether it's with a, a, a spouse or a partner or, or a sibling or a parent or a child, you know, somebody close to you, close relationships are difficult, period, you know, and they're just challenging. And there's a lot of give and take, and the close proximity that you have, uh, allows for friction points. And so, you know, you throw in something like Lambert Eaton myasthenic syndrome and, and three, three young kids, you know, into that mix. And, and you've got a recipe for, for some, some challenges. So, um, we, we don't have an answer yet, you know, we're, we're, we're working through it.

Connor (29:03):

We have good days and bad days, Like, like everybody, I think. And you know, I think sometimes we just, uh, we need, we, we just need to sort of break down and, and let it out and, and understand each other that we're both struggling, um, that are struggles are both real, that we're both validated and, and that we're just, you know, we're just trying to do our best. And, you know, we make it to another day. And, and sometimes that's all you can do, you know, you just got to make it to the next day somehow. You know, sometimes you go to sleep and you're like, Boy, man, what, what the heck is this about? I just, I don't like any of this. And then, you know, you, you wake up and you're like, Okay, all right, let's, I think we can do this again. Let's go.

Kevin (29:54):

You said before something about that you're not alone, Other people have been on the journey. I encourage you that there's lots of people dealing with lots of rare diseases that are in that situation, caregiver and patient. You and your wife probably could seek them out and gain some wisdom, cause some people have been down this path before. So we're just about done here. What would you like to leave with our listeners? What's the takeaway from today's discussion from your point of view?

Connor (30:25):

It, it's good to know that there's, there's other people out there that can sympathize with you and, and even if they're not, you know, there with you, you know, you know that you've been on a similar, on a similar journey, um, and, and getting strength through that knowledge is, is hugely important. And I just say, you know, one other thing and, and, and reiterate the importance of opening your LEMS journey, you know, in, in a constructive way with, with those closest around you. And again, you know, I I I, I wish I had the right answer on how to do that, and I think it's going to be unique for everyone else, but just, just knowing, you know, and, and, and, and sadly for me, my, my sort of realization of, you know, the magnitude of impact on, on my family of my condition was only fairly recently.

Connor (31:20):

And I kind of, I wish I would've had that perspective earlier on in this journey. Um, I think I I I would've made more inclusive and less, you know, less sort of a, you know, macho, I can handle this on my own. Because the reality is, is that you can't, you know, you just, you, you, you have to have a team and, and sometimes part of that team is your family and their difficulties in their troubles because of your condition is, is hugely important. And it's, and it's going to help you in, in your management and your expectations and your struggles with the actual, you know, with the actual condition.

Kevin (31:59):

Wow. That's very powerful advice that unfortunately it's the kind of advice that it's hard for people to grasp because they're dealing with it themselves and it's like, oh, the first thing he said to do was make sure I'm sharing it with someone else. I don't even know what I'm sharing yet, but, but it's a powerful piece of advice, you know, don't go at this alone. I want to thank you so much. This was a very good conversation. I want to thank you for sharing your story, your family story. And I know that there's other LEMS moms and dads out there. They may not know they have LEMS yet, but they may recognize some things here. They may know they have LEMS and they're going to recognize some things here. And what you've talked about is going to be very, very helpful. So thank you very much.

Connor (32:49):

Thank you, Kevin. It's been an absolute pleasure.

Kevin (32:53):

Thank you for listening to the LEMS Aware podcast. You could learn more about Lambert Eaton Myasthenic Syndrome, and how to get involved in the LEMS community at www.LEMSaware.com. LEMS Aware turning LEMS knowledge into strength. The LEMS Aware Podcast is produced by Salem Oaks, empowering patients to shape the future of medicine.