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 the LEMS community on topics that matter to you. Welcome back to the LEMS Aware Podcast. Thank you so much for joining us again. Today we are speaking with Karen a LEMS patient who has found many ways to adapt to her condition. Karen, could you introduce yourself, please?

Karen (01:06):

Yes, um, my name is Karen Hayes, and I have lived many, many places in my lifetime and currently in Arizona, loving the weather at this time of year.

Kevin (01:18):

Yeah, we're enjoying fall here in New England, and, and it's starting to feel a little like winter, but that's okay. It's the right season to do that. So, um, so can you tell our listeners what a typical day is like for you these days?

Karen (01:33):

Um, I am still working, um, part-time. Sometimes it feels like full-time as a clinical social worker. I travel, um, 85 miles to my office. My patients are anywhere from 65 to a hundred miles from me. So when I am working, I am in and outta my car quite a bit, um, in and out of houses. When I'm not the days I don't have to travel like that, then I keep up with our home. We're involved in our church. Um, I've been physically active, a huge amount of my life and LEMS has been an adjustment, but I keep pushing those limits. So I'm, I don't, I'm not typically, I love being home, but I like being home, being busy doing something for the home or for someone else. So my days are pretty busy. I rarely have a down day where I have nothing to do.

Kevin (02:35):

Well, and you said you'd drive 85 miles to your, to your office. That to me sounds, that's a long drive. That, that sounds like it would, it would have an impact on me. Um, in fact, I just drove it. It's

Karen (02:50):

A long drive. The the beauty is that I can take the back roads, the ranch and farm roads, um, smaller arteries that I don't have to deal with a lot of traffic. I don't have to deal with a lot of lights. Um, I think in the 85 miles I probably hit four lights. So the scenery is absolutely gorgeous. And in Arizona weather, Arizona skies, even if you don't like the heat, the skies are pretty, pretty <laugh>. They're good. And so I have a lot of, I'm, I'm in a lot of nature and agricultural area and it's very calming. I would not want to put two hours in traffic in Phoenix or New York or San Francisco or Chicago or, or Dallas or something like that. That would be insane.

Kevin (03:46):

I agree. Um, so when were you diagnosed with LEMS?

Karen (03:51):

I was actually diagnosed in September of 2013, but the symptoms started in this fall, the spring, actually late spring of 2001.

Kevin (04:05):

Okay. So it's been 10 years since diagnosis, but you've been It

Karen (04:09):

Was actually about 12 years before I was diagnosed.

Kevin (04:12):

Wow. So that's nearly 24 years now that you've been dealing with LEMS.

Karen (04:20):

Yes, yes. Going on 24 years. Going on 24 years. Um, but it, I, I did see neurologist when the symptoms started, I saw one that was highly recommended by a team I worked with, a neurologist I worked with at the VA, and then I had them review. He didn't know they had them review my file completely. Um, I was referred to a movement, a specialist, um, in movement disorders at UNM. He is, he shook his head and didn't know. And so after that, after a few months of being tested and talked to and asked a bazillion questions, I decided, okay, they don't know. I was also told that by some, um, physicians that's oftentimes with neurological disorders, they don't know why. No matter what they look for, they, nothing comes up positive. And that was very true in my case. So I decided not to keep pushing doctors and just kind of decide what I needed to do to be comfortable with my abilities. Uh, what could I do, what couldn't I do, change some of how I approached getting certain things done and just stay on it and just figure that's the way it was. I was fortunate because there was no pain with those limits. Not everyone is fortunate with that. Some people have quite a bit of pain with, with their symptom. So I was fortunate. I did not.

Kevin (06:03):

So before you had the formal diagnosis during that, that 12 year period, how did you need to adapt your life to whatever was going on here? What did you do? What were the steps you took?

Karen (06:14):

Well, the first thing I had to do, I was, uh, we hear about type A. I was probably a quadruple A, especially when I walked where I worked, I was always on the go and, um, did landscaping, did painting, cleaned houses when someone needed some help. So I was out, um, and I was just out a bit. I was physically active when it started. I could no longer do that. But, but also I wore suits and nylons and heels to work, and those were out completely that wasn't going to work. So I had to completely switch my wardrobe to things that were elastic and more casual and more and easy to get in and out of, which was a major shift for me. Um, so that was my first, um, a change that I knew I needed to make. The other thing is I, uh, that I could not do any longer was do grocery shopping in large stores or clean my house.

Karen (07:24):

And so our house wasn't, um, really something that I wanted to show off <laugh>. It was clean, but it wasn't house beautiful. And my husband took over the house cleaning and the grocery shopping, and I used all the energy I had to continue working because I was a, a career employee at the va and I wanted to finish out my time. So I got to work and back. I did use a, for about six or seven months, an electric chair at the VA so that I could get around. It was, uh, it's a very large facility and, um, that, that gave, that got me into the clinics I need to be into and back and forth from my office and taking care of patients. Those were some of the changes I made. But I did have to, I used to love to walk and that had to stop.

Karen (08:25):

So there were a few times I fell quite a bit before I finally decided that I needed to be a little more realistic about my abilities. But I had had falls with broken bones and a chipped nose and stitches. And then finally I just decided, you know what? I need to back up and stop pushing the envelope as hard as I was. And, um, after that, then the falls stopped and I was more realistic about how far or what I could do in a, in a safe mode, again, without answers. And some days were better than others. I noticed that my amount of sleep I had had or not, uh, there were some medications that I had to take for others situations that in that affected in a negative fashion my function. So it was a learning, it was a constant sort of assessing and changing what I could, adapting to what I couldn't change.

Karen (09:28):

It was constantly for 12 years. In fact, I'm still doing it because this, from my perspective, in my case, this, this condition is evolving and I, I don't think it evolves the same way with every patient, but things I could do two months ago, I may not be able to do now. So it's not necessarily week to week or day to day that it changes, but I can look back month, months and see patterns that are shifting. And I have to be very, very aware of that, um, so that I'm not pushing myself beyond the limits that are reasonable.

Kevin (10:08):

It, it seems to me that for me at least, I would, I notice those things that, you know, yesterday were okay today there not something that happens over a couple months. I'm probably not gonna notice it. I, I couldn't, I can't imagine training myself to go, Hey, hey, let's think back two months. How was I? Um, it's harder to notice the slow ones

Karen (10:32):

I part of. Well, and the other thing is I'm, I'm 79, so without LEMS, would I be able to do all those things I did 20 years ago? Probably not. And so I, my neurologist and I laugh about it because I said I can do this, but, but I'm having trouble with that. Um, so I don't know if it's LEMS or it's, it's just old cells and muscles and tissue and bones, <laugh>. Um, but I think the most people notice the changes if they don't have LEMS in their abilities when they have to exert themselves a lot, like climb up on the roof and, you know, um, I don't know if you guys have swamp coolers, but the south is loaded with 'em and have to clean those out and set them up or put them to bed tho. Those kinds of things get a little slower as we, as we age naturally. So I don't know how much of my limits are actually LEMS. I think they're a good part of them are, but some of it is aging. And, and, and that's a reality that, you know, has to be factored in.

Kevin (11:44):

Yeah. And it's before you were diagnosed it, you know, the doctors are just saying, we don't know what it is. It'd be easy to say, well, it's just, I'm getting older. Um, but that must have changed once you actually had a diagnosis.

Karen (11:59):

Well, interestingly, none of them mentioned the age issue. When I, that was 20 years ago. I was in my fifties. I think had I been older, they would, if that was coming into that realm. Now, I definitely think they would be playing the older card and they would be, they would be right to a degree. Um, but they weren't, they just, they just didn't know. And one of the problems was, uh, one of the titers that they are still doing, and they did it when I was diagnosed, was not sensitive to LEMS. And so it came back normal even when the diagnosis was given, the day they found out what I had. But the doctor that I was seeing had familiarity with LEMS in the past, and so he saw that, but he still checked anyway in other ways, and that's how they came up with the LEMS Diagnosis.

Kevin (12:58):

Your life, you seem to just be adapting all the time, at least the last 24 years. What life experiences do you think sort of prepared you to do that and gave you that worth work ethic of, of kind of pushing, but noticing your limitations?

Karen (13:14):

Well, and you know, you're right. We, we kind of thought about that before. When I look back, I hadn't considered that until you and I first spoke, but looking back, um, my family, we moved a lot. Um, probably more, more than some families do. Maybe not as many as other. My father was not military, but um, I was born in one place. Two years later we moved out of the area of that area and then to a farm. And about four years after that, we moved out of the state and into another farm. And about five or six years later, we moved back to the city. And we moved in about two years. We moved twice because we were temporary in one spot. And to then we moved to where I would go to high school. And then from high school when I went down to college, which was in another state, <laugh>.

Karen (14:13):

Um, and then married several years later. And again, another move, and then another move about 18 months later. And, uh, then about two years or three years later, another move and then overseas across country and then overseas and then back. So I've never, um, I never really found that. I felt I had a home like, oh, I'm from so and so, I'm from Chicago. But I didn't, there was not a, um, well, that's where all my family is and that's where I grew up and things like that. And I, and I kind of envied folks sometimes when I come across that. But by the same token, changes that came into my life were something to be, um, evaluated, something to be looked at, something to take seriously, but not fight man. There's a difference between I don't like what's going on, but what can I do about it?

Karen (15:23):

You know, like, how do, how can I adapt to this? There's a difference between that and things that you, I don't like happening to me saying, no, no, no, this is wrong and I'm not, I'm not gonna put up with it. I'm not gonna deal with this. There's a, a, a difference in attitude. Um, not that things that are unpleasant have not happened. They have, but my choice is to work with them and not have an expectation of how they have to turn out, but just to make the best of, um, what, what I have to deal with and find peace with that. And then if there are things that I still wanna do and I can't, that's where, that's the way it is. It's a new normal, if you will. And I found with LEMS, um, I've had several new normals because some months are better than others.

Karen (16:23):

Um, and it doesn't seem to app, it doesn't seem to really make a significant difference in whether I take, um, my medication at a certain time of day. It does make a difference if I'm on another medication that will fight that, but, but I can separate those out. But there doesn't seem to be something outside of watching, you know, eating properly and getting enough rest and gauging my, my strength, my abilities, my stamina. There doesn't seem to be much else that I can do to keep LEMS it from, from being, having an impact. It, it's going to happen. It's like, okay, what do I do with this?

Kevin (17:12):

Well, and that's interesting 'cause the way you related that to the, all the moves, and again, you know, you drive 85 miles to work back and back. I can't, I can't do that. I really hate moving too. We've only moved twice <laugh> ever. And, uh, it's a very, you know, it's a very disruptive thing to move, but you learn how to deal with it as you do it more, you get, get better at it. And now you're doing that with LEMS as you know, the new, the new surprises of LEMS, the evolution of it come up. You are not alone in this. Right. Um, your husband's there and he's been having to do this. What does he do? Uh, how is he first, how has he adapted? What has he had to change in his life besides doing the cleaning of the house now, but how does he help you through this?

Karen (18:10):

Um, he's very available to me, and he works still part-time, um, himself. He works 20 hours a week and where he works then they can't have cell phones on, on the floor. And he has permission to have a cell phone because I am out and about. Um, I have had falls or theres things that would be helpful to have him handy as quickly as possible. So they've made that concession for him. But when it first happened, he was absolutely, I could not have asked for someone any different than he was. He stepped right in. Uh, we, we had some interesting discussions about grocery shopping and, you know, picking brands and what to look for and things like that. He's a real expert now. But, um, I had a, I think I mentioned this story. I had a, at that point early on in LEMS, I, I'm not a breakfast person where there's like pancakes and that kind of stuff.

Karen (19:12):

I love maple syrup and butter, but it doesn't love me. So, um, I was a, um, a V8 person for breakfast. Those bottles, those core bottles are heavy and maybe not if you're regular, you know, if you're strong or your normal strength, but for me, they were almost too much to lift and I couldn't open them if they were a brand new bottle. So what Ken would do, he always went to work before I did. And what he would do is open, if he saw that I was getting low on the current bottle, he would open another one and then tighten it enough so it didn't leak. But when I got up, that was available to me. So he stepped in to take over a lot of stuff. Um, he's still doing that. There are days I can do some of these things myself, and there are other days when I have to say, or hours of a day where I have to say, could you do this for me? Um, he never, um, complained about why things weren't getting done, uh, the way that I used to do them or, um, how I did something. He's never complained about that. He's just amazing. And again, not everyone has that kind of support. It's essential, but not everyone has it.

Kevin (20:36):

Well, and again, such a good example of something almost unseen, right? Loosening the cap just enough so that when you woke up, you could, you could open the bottle. You know, that, that requires an amount of attention to you. Um, I mean, <laugh>, it's quite romantic actually, in its very simple way. You know, it, um, it's his flowers. <laugh>.

Karen (21:07):

Yeah, it, it, the other thing is that I, if people don't know I have a limiting function, I look fine. I am walking and I'm talking and, um, you know, I'm working and unless, I'm musicing a cane a lot. I am, not all the time, but when I'm on uneven terrain, sidewalks have cracks in them. Um, I work in a, uh, in a mining community, so there's hills and whatnot, rocks and things like that. But if I don't tell people, I'm sorry, I can't go get 10 pounds of ice for the office because I can't pick it up, <laugh>. Um, they, I look like I could and I look like I should be able to, you know, help in the nursery and hold kids. But it's like, no, I have to be very careful about my own balance and I do not wanna drop a baby. So, um, I think that's part of, i part, I had to be able to accept and comfortable with this diagnosis so that I could easily share that with others. Not, oh, poor me, but this is why I can do certain things and why I can't do certain things and don't feel sorry for me about that. It's just, it's part of my life. Just like I have, you know, I wear glasses and hearing aids and you know, I'm five four and whatever. It's part of my life, but it's not, it's not my whole life.

Kevin (22:42):

Yeah. So it's very interesting, the invisibility of this. Um, how, how do people after they find out, how have they reacted?

Karen (22:55):

I, I am, you know, I was told at 21 that I would be deaf when I was older. And that has happened. I never saw that as a bad thing. Limiting, yes, but not bad this. So when I had to start wearing glasses, that was way before our hearing aids, but it's like, I need to internalize that those things are a piece of me. It is not me in total any more than the LEMS is. So my friends, our family, I mean, whoever needs to know, they know I have LEMS and they know I wear hearing aids and they tease me. They'll say, did you hear what I just said? No. What did you say? Say, nevermind. It was about you. So they're tea <laugh>, you know, we tease back and forth. Um, and the same thing with the glasses. I mean, do you know how many people wear glasses in this world? It's not a, it is not a, uh, condemnation of them as people. It's part of their needs. And I think I, I've never felt un uncomfortable without saying, you know what, yeah, I can get over to your house. Do you have steps? Is there a railing?

Karen (24:20):

That's not, that's not, that's not who I am. I'm, that's part of who I am, but I don't, I think we need to be, um, my, my goal is to make this as it's, I'm different in my function than other people are. But that's okay. And it's not something to feel sorry for someone about or, or, or hide it. Because if, if we try to do that, we won't go out and go anywhere if we're afraid we're gonna fall. So it's different for everyone though. And you know, it really depends on their limits and who their friendship groups are and things like that. It's what works for one may not fit for another.

Kevin (25:05):

That's an important thing. So I want to know what's, what's one thing you would like our listeners to take away from our discussion today? Knowing that our listeners are, a lot of, a lot of them have LEMS, um, but a lot of them don't either. So what would you like them to take away?

Karen (25:25):

I think the tendency, this is just my take. Anytime something happens to a person, a diagnosis, a condition, uh, a trauma, there's a period of time when we have to really face it head on and grieve the change, the loss in what we can do or how we feel, or the extra work now that we have to do to, to stay alive. I think there, that is normal and that needs to be done. But then not to take that condition as a, um, as something, and I have to be careful because this is different for everyone, but not to make that condition the focus of their life, but to respect it and not just acc accept, oh, I can't do this anymore. Um, painting, I love to paint. I redecorated houses many years in my life. Okay, okay. So I'm not good on ladder. Okay, I, I can do that a little bit, but I have people I can work with and I can sit down and do all the cutting work and the, and the, and the baseboards and things.

Karen (26:44):

So it's what is really important. Is there another way to do it? Find if you can, now again, that's not gonna apply to everyone and that's not going to apply to every condition. But so often I see people have a major health issue, whatever it is, and that becomes their total life focus. And it's like everything else has disappeared. And sometimes there are certain serious conditions where that is reality. But if, if there's anything left that's possible, doing it a different way, I would say instead of you using the energy to, to constantly grieve or resent or be angry about the loss, find something if possible to make that same, to, to give you the same ability to stay active, um, to make that part of your life. But not, not everything. And I don't know if that helps or not. And it's hard to, it's hard to put that in word. It's like, don't sit back and just let it take over your life. Push back if you can. And not everyone can.

Kevin (28:05):

I think that's a great message for a lot of us. Um, but especially LEMS patients who have this thing, this curve ball, you know, that comes into their life usually later. Um, you know, find a way to go around it, not through it. Um, and find, find replacements for those things that gave you that fulfillment before that you just might not be able to do now. So I think, I think that's a great attitude. And, uh, well,

Karen (28:34):

And, and there was, um, uh, on one of the early calls, um, there was a lady on, um, who worked in an office that required it was eight to five and she had trouble in the morning. I do too. I, and getting at some morning, some mornings more than others. She had a lot of trouble getting there by eight o'clock. But they were, she was in a job that required her to do these things. And I don't know if they didn't know her condition or if they did, and it didn't matter. So those are realistic situations. It's like what you are doing, is there a way to modify that? And because my, I've been very blessed, the staffs that I have worked with, the supervisors I've worked with, when they knew the reality, they would help me figure out a way to get it done. But not everyone has been blessed with that.

Kevin (29:32):

It goes back to what you said, that this is part of your life, but it's not your life. Right. Those supervisors saw the value you were bringing in what you do with your social work and your caring and your empathy, that probably got stronger when this happened. So, you know, the being able to do things exactly as you did before was minor compared to what you do, and you're really strong at

Karen (30:00):

What's interesting. Um, and I know how much time we have, but what was interesting was when I, I was still at the VA and I had a lot of, I've been there for a long, well, 20 years. And, um, when I was in a, at a point with this, we haven't, there was no diagnosis yet. And I was using a power chair to get around the VA. And two of my very, very closest friends, even today came con cornered me One time. We were in an elevator, there wasn't anyone together. We were waiting to take the elevator together. And they said, you know, you are always smiling, and we thought you were just like, you know, being, you know, putting on a front. And I said, no, this and my legs don't work. My hearing is not great, but the rest of me is fine. Okay, I'm still me.

Karen (30:51):

Um, but what I saw in the VA, we took care of a lot of veterans on in wheelchairs and walkers and canes, and what I saw in their eyes was pity not the two that I'm talking about. A little bit of that, but they got over it real fast. But I, you say, oh, oh, you, oh, poor thing. Can I help you? And it's like, I'm not a poor thing. Okay. Um, is, is not letting that, I, I was shocked actually, we're we take care of people that needed help functionally, is that how you're seeing them? Are you pitying them? That's wrong. That is not helpful at all, and it's not healthy. And that really struck me, and it, it gave me perspective when I work with folks that are, that have some functional issues to be more patient and more understanding and not see them as that, just as that condition. Those are, those are people with a condition, not a condition that attached that, that happens to envelop that person. So it, it's, it really was an eyeopener.

Kevin (32:11):

Yeah. They, they probably connect with you better than someone else coming in and doing the same job.

Karen (32:20):

I, I think sometimes they do. I think my age helps me in that because a lot of our patients are, our patients are older, and when I go in, it's, it's kinda like, oh, you've been around for a while. I said, oh yeah. Um, I say things like my name and I say, you know, like Helen Hayes, Gabby Hayes, and the younger folks go Who? And the older ones say you knew, you know about them. Oh yeah, I know about them. And you know, Roy Rogers and Jean Autry and, you know, all of that stuff. It does, there's a familiarity of, of similar experiences that, you know, we, we com and they, they, like my canes, when I go in with their cane, it's like, where'd you get the cane? I like that. I like that cane. So there is, um, a connection of shared issues, even though it's not LEMS, um, it's like, oh, you don't get any round any better than I do. You know, that kind of thing. And I think that makes us more human.

Kevin (33:19):

Well, we're just about out of time, so I want to thank you so much, Karen, for sharing your story, for sharing your, the joy you have in life for sharing, you know, what you just taught us about connecting with people who might have something slightly different, but they're in a similar situation. I think that it gives me a lot of insights into, you know, what, what makes you tick. So thank you very much.

Karen (33:47):

Thank you, Kevin. I, this is just a journey, and as I said initially, it doesn't apply to everyone and not everyone's experience is gonna be the same. The the issue is don't just quit with that diagnosis. And you, you have to do it for a while to, to grieve it out, to grieve the losses, but don't get stuck there if you can. If you're anything at all, find another way around. Um, may not be able to do things, but find things that you bring you joy and give you a sense of, um, of competency, a sense of being valued. And that's for everyone that's gonna be different.

Kevin (34:34):

Thank you for listening to the LEMS Aware Podcast. You can learn more about Lambert Eaton Myasthenic Syndrome and how to get involved in the LEMS community@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.