Kevin

Welcome to the very first episode of the LEMS aware podcast. Today, we have two guests from the LEMS community. Ashley Gregory, and Price Woodridge met each other through their involvement with Lambert-Eaton and have become friends. They have very different stories tied together by the common thread of LEMS. Could you tell us a little about yourself, Ashley?

Ashley

Sure. My name's Ashley Gregory. I am 31 years old. I was born in Virginia Beach, Virginia, and I have lived there for most of my life. I graduated nursing school in 2014 and began working in the operating room as a registered nurse. In my spare time, I like to spend time with my Australian shepherds. I have two, and I'm also a foster mom for an Australian shepherd rescue. And I also like to raise Monarch butterflies.

Kevin

How about you Price? Tell us a little bit about yourself.

Price

Well, I'm not 32. I was born in 1949. So you can do the math on that. I was born in Austin, Texas. Grew up out on the plains in, in the panhandle, in west Texas, graduated high school in North Dallas, went to Southern Methodist University for broadcast, film art, and then got working in radio in Dallas. You know, a big market. I was working with people that I grew up with and kind of got a big head, thought I was really doing good and that kind of cratered my schoolwork.

The Vietnam war was going on, and so it looked inevitable. I went into the Air Force for four years during the Vietnam war and served overseas and came back to Bergstrom Air Force base in Austin, Texas, where I was born. And when I got out of the Air Force, I went to the University of Texas. They were gracious enough to let me back in since I was making good grades, and I got a degree, Bachelor of Science in radio television film, because I always wanted to be in TV. I did that for 30 plus years, mostly on the production side, a little bit of radio that I spoke about.

I took a little detour. I had respiratory problems. I was a little bit burned out. So I got a degree in Physical Science, worked as a registered respiratory therapist in a large hospital in Oklahoma City and they paid for my schooling actually. So I did that little career for a while. So I've kind of got a science side and an artistic creative side, I like to think. That's pretty much where we are.

Kevin

You've got a little bit longer story because you've been around a little bit longer. What did you do in the Air Force? What was your role or job there?

Price

I was military police for part of it. And most of it was base defense, including over during the war in Thailand, we were very up close to north Vietnam. Most of the air war was done out of our bases. Then I spent the latter part of my time in the Air Force in administration at Bergstrom Air Force base, and that's how I finished my career. I was a staff Sergeant when I left.

Kevin

Well, thank you for your service.

Both of you have this condition called Lambert Eaton Myasthenic Syndrome or LEMS for short. It's much easier to say. Price, Can you tell us a little bit about how you found out about this and, and how did this all start for you?

Price

Well, the only way I found out about it was getting it. It was a long process for me and it was a mystery. I started having blisters on my hands and around my waist, and I didn't know what that was. I mean, I would just fester and blister up and I went to a dermatologist and they biopsied it. It came back as dermatitis herpetiformis, which is a celiac disorder, which is an autoimmune disorder. That was the very first autoimmune disorder that appeared to me for no reason that I could ever figure, and I'd had a problem in about 2009.

I'd suddenly had difficulty walking. I had no clue what was going on. Had my sister take me to the VA hospital in Dallas. They put me in the hospital for six days and we ran tests and we did a muscle biopsy and everything, and oddly I left the hospital after seeing a lot of doctors and a lot of medical students and I didn't have a diagnosis, and I kind of got over it some to some degree.

Then in about 2017, I was at the state fair doing photography, and I had started having difficulty walking out of the fair. I was happy to get out of there, lucky to get out of there and didn't feel well. And then it kind of got progressively worse. I had diabetes clinician suggest that I take a statin drug for another issue, and that statin drug really cratered me. I did a couple of electromyograms where they stick needles in your muscles to check electrical conduction and how all that is working.

And uh, those PMNR docs sent me to a neuromuscular neurologist at the VA there in Dallas she immediately, almost immediately said, I think you've got, Lambert Eaton Myasthenic Syndrome. That was the very first time I ever heard it. Of course, when you hear that and then we did a blood test and we did another EMG and she had done a clinical evaluation of me. And within a few weeks there, the first few weeks in of January, I had the firm diagnosis. That's where it started for me.

Kevin

How much time elapsed between when you first went to the hospital and when you got a diagnosis, a definitive diagnosis?

Price

I think it's eight or nine years and I do not believe that is terribly uncommon.

Kevin

I agree with you. I've talked to many people with rare diseases and that timeframe. That nine years is a long time, but it's right in the range of what most people are finding because no one knows what to look for.

Price

And, and I would've been about 60 when that happened.

Kevin

So you probably weren't expecting to be spending so much time in the hospital. Then how about you Ashley? Tell us your LEMS story.

Ashley

Sure. So in 2014, I began working at the hospital as a nurse. In August of 2015 I came down with what I thought was a cold. I was sick for several weeks, ended up going to the doctor and found out I had pneumonia. So after the pneumonia, I started having a lot of we weird issues that I never experienced before. The other symptom I was having was pretty profound fatigue. I would get home from work every day and end up having to spend the rest of the evening on the couch. There were nights where I couldn't even cook myself dinner.

Now, before my LEMS diagnosis, I was very active and I would come home from work and usually take my dogs to the dog park. We'd walk about a mile to get to the dog park and spend about an hour there. That was something I was definitely not able to do, and I ended up having to move in with someone to help take care of me. But because of my age and feeling vulnerable, I didn't want a lot of people to know about all the struggles I went through. And when I was finally diagnosed, a lot of symptoms clicked in my head that I didn't realize I was having.

So, I always thought that everyone walked around feeling like they were heavy, like they were wearing a lead apron. I didn't realize that that wasn't just being tired. That that was more than that. I didn't realize that I would get these pains in my legs that I would always describe as growing pains. And I didn't know that that was something that didn't happen to everybody.

So, when I was finally diagnosed, a lot of pieces of the puzzle started to come together for me. I began having acid reflux all the time. I would have Tachycardia. My resting pulse was in the one sixties. And I ended up going first to a GI doctor. The GI doctor dismissed all of my symptoms and told me that I was anxious. He told me that there was nothing wrong with me, that I was making it all up and that I needed to learn stress relief techniques, including deep breathing exercises and yoga. So I left that appointment feeling pretty defeated, and that was in about December. And I kept having the same issues, especially with Tachycardia, but no one was really taking me seriously.

So, finally, in April of 2016, I ended up having issues that were at work. I felt like I was going to pass out. I ended up being hooked up to an EKG and my pulse was in the one eighties. So, they sent me to the emergency room. I got admitted and got a full workup. So, they did a lot of tests. Everything was pretty inconclusive. And they sent me home.

In June I was referred to a cardiologist who specializes in electrophysiology of the heart, and he told me that he thought I had something called POTS or Postural Orthostatic Tachycardia syndrome. And he then ended up sending me to a neurologist who specializes in POTS and autonomic nervous system disorders, which LEMS would be classified as, so I had six months of testing done. And finally, in September of 2016, I was officially diagnosed with Lambert Eaton syndrome.

Kevin

It's surprising that your timeframe to get from non-diagnosis to diagnosis was, was much shorter. Particularly given that Lambert Eaton is usually something that comes in your fifties and sixties and seventies, and you were in your twenties then, right. Or early thirties. And for them to make that diagnosis so quickly, that's fantastic. I wonder what was the hospital environment that you went to? Not the name of the hospital, but was it a big hospital, academic hospital, and same for you Price, you know, what kind of hospital system were you in?

Price

Well, I was in the VA hospital in Dallas. So, it's, I believe the VA Dallas healthcare system is just about one of the largest in the VA system. It is a teaching hospital, so there's a lot of UT Southwestern medical students who come through doing rotations. I was seen when I was in the hospital, there were teaching doctors who would bring their classes by my hospital bed and have me do a little dog and pony show about how I couldn't walk. <laugh> You'd think with all that brain power, they would've figured things out. And, you know all the usual suspects came up, you know, myasthenia gravis, Guillain-Barre those types of things. But any rate, I was in a large veteran's hospital here in Dallas.

Ashley

I was in a hospital in Norfolk, Virginia, and luckily for me, the neurologist there actually trained at Cleveland Clinic. He is an expert on LEMS and other neuromuscular disorders. So, it just happened to be, I was in the right place. Since I was a nurse I pushed extremely hard to get an appointment. Originally I was told that I'd have to wait a year to get in to see him but I just kept calling the office every day and finally they had an opening and got me in early,

Kevin

You know, that you were in the right place to find the treatment, had the right person there, that again is a theme you hear over and over with people who found out what they have. And it makes you wonder what about the people that are out there, where there is no big hospital around, where there isn't someone from the Cleveland Clinic where it's a community hospital out in a very low population area. It's really amazing that people there find what they need. They have to go to those specialists somewhere.

Your stories are really different, but there's a pattern there. You both had a bunch of symptoms and there were so many questions about it. And as Price said, doctors were curious about it like, what is all this, you know, let, let me show you this guy. So, it's like this, so many questions from the doctors. And at first, when they didn't know what to do, they gave you something that didn't work right? The statin, or they asked you to do yoga. They really had very little to offer you, and it took time to find the diagnosis.

So, I want to know, how did you respond once you finally got that diagnosis? You knew what it was. You were confident in it. How'd you respond emotionally, intellectually, and practically. What changed?

Price, why don't you go first?

Price

I was so at excited. I couldn't believe it. It sounds odd, but it's true. When you go through something like that, the inability to walk, the inability to get yourself out of a chair by just raising up to finally find out after all that time, it had a name, it has a name. And the first thing that went through my head was, ah, now we can get a plan. Now we can do something. If they don't know what it is, nobody does anything. It was a big deal for me. And I was really excited.

Kevin

How about you, Ashley?

Ashley

So, when I sat down in September of 2016, it was literally two weeks after my 25th birthday when I was diagnosed. I cried when my doctor finally told me that I had LEMS and it was something real. I cried. I was just relieved that somebody finally listened to me and that they found out what was wrong. I was also very overwhelmed because I'd been perfectly healthy not even a year before and now I was being told that I had a lifelong condition that was something that needed pretty serious treatment. So, it took me a little while to adjust to that. I was angry for probably the first year after my diagnosis, just trying to adjust to it and trying to learn my new normal.

Kevin

And what is that new normal like what have you had to do to adapt your life with LEMS? What changes have you made?

Ashley

So luckily for me, I get an infusion called IVIg every month, and that has returned me almost to my baseline. There are some different things that I have to do to accommodate myself, but there are small adjustments that I've made over time and now I'm completely used to them and they just are second nature to me, but I do plan my life around my infusions. I make sure that I have good support during that time and time off from work, just to make sure everything runs smoothly.

Kevin

You've got to take that extra time, both ways, you know, time to do things and to take time off work. Price, what about with you, what have you done to accommodate or to manage life with LEMS?

Price

First I want to say to Ashley, you know, it's just absolutely amazing that she's got the fortitude to keep working, because I know how this is. It can be more than troublesome. So, at any rate for me, it's been a problem and continues to be a problem. You really have got to make decisions about what I will do and won't do, can or can't do, and a lot of times, for me, Lambert Eaton is day to day. Some days I'm feeling really good. I had a good walk today. Other days I went out and I could barely get my walk done. It felt terrible I cut my walk short and it just was a horrible day. I guess the most again, probably the most significant thing is having to adjust my lifestyle based on what I think possibly I can't do.

And I'll just give one example. I got invited to go to drag races, I love to go to the drag races, with some of my high school buddies. And I declined. The reason I declined was I didn't know what I was going to be getting into. It was going to be an all day deal where we're going to be on our feet. Where everybody was going to be walking and prowling around the garage areas and everything. That's a problem. I didn't think I could do that. And I can. What am I going to do out there in Ennis Texas if I have a big problem?

So, you make those decisions based on Lambert Eaton, it's very unfortunate. I know that Ashley and I both work hard all the time, trying to figure things out, to make things as good as they can be day to day.

Ashley

I want to add on to what Price said. Like Price I have had to kind of decide what I can and can't do as well. Just an example. So, I'm lucky enough to still be working. I still work full-time as a nurse, and right now my hospital workflow has changed a lot because of LEMS and because of COVID. I actually had to get a special accommodation letter from my doctor stating that I can't take care of patients that have COVID because I'm immunocompromised. And also I've had to turn down several social engagement invitations because of my being immunocompromised.

This weekend, everybody that I worked with went out to one of the country bars to learn how to line dance, and I had to tell them I couldn't go. I, I can't be out in a big situation with all these people right now. And that's just not an option for me. So, it's something I've kind of had to come to terms with.

Kevin

That's a huge adjustment. And when we talked a couple weeks ago, you guys both mentioned the invisibility of it and the fact that people don't understand what's going on. It's not something they can see. Can you tell us a little bit about, tell our listeners a little bit about what you've done about that or how you react to that? When it's pretty clear someone can't see what's going on with you.

Price

It is frustrating. You know how you are at home. Sometimes you struggle to get around the house or you'll have crushing fatigue. That's the other, besides muscle weakness, fatigue is probably the other big marker for LEMS. You see that at home and nobody else does because when you go out, you're okay or you're good enough to get out and go about so people don't see what you struggle with on a day to day basis, unless they live with you, you know, and you can, you try to tell people and sometimes maybe it gets through and sometimes it doesn't.

We use a metaphor called spoon theory at times. Uh, it's an interesting concept. When we wake up in the morning, we don't know how many spoons of energy we have every day. Do we have a lot of spoons? Do we have no spoons? And once your spoons are used up, you don't have more spoons for the day, your energy for the day is pretty much done. So that's a good illustration to people who don't understand the energy loss, the weakness what's going on.

Kevin

Thank you for that. That's a really clear model of how you guys need to manage life, you know. Yep. You've got your spoons, you know, a symbol of here's how much energy I have and once it's gone, it's gone. So, I wake up tomorrow and find out how many spoons are there. How about you, Ashley?

Ashley

Yeah. So, the invisibility aspect of LEMS has been one of the hardest for me, especially being as young as I am. People always see how good I look on the outside and they just assume you're normal. I know that when I was first diagnosed and going through this, a lot of people would tell me that I was too young to have health problems. I was too young to be this sick that I had a lot more life to live and that I was just making a big deal out of nothing. I know, so the days I go get my infusions, I usually just pick up food after and go straight home. And usually when I pick up food, I try to park very close to the restaurant, so I don't have to walk far. Sometimes I get looks from people, especially when I was wearing a mask in and other people weren't wearing a mask, even before the pandemic. So, you kind of just have to learn to deal with the fact that people just don't understand, especially people who haven't been through it, or they don't know someone with chronic illness, it's it doesn't discriminate. It doesn't matter if you're young or you're old or you're purple or black or white. It doesn't matter. It’s there.

Price

There, you know, I'm old. I guess everybody expects me to look bad out there, because <laugh> when I park in handicap parking, nobody says a word <laugh> I guess they expect me to look bad.

Kevin

Yes, you guys are in different situations, socially completely, right? Different stages of life. And I really want to thank you for sharing your stories and go kind of deep there and what it's like to, to face that. As you realize, you were not alone in this, as you start to meet other people that had LEMS and you started to make those connections, what ways have you found to contribute to this larger LEMS community?

Ashley

So for me, becoming a patient advocate has been a big part of my LEMS journey. Because of my nursing background I've became really passionate about it. I've used a lot of my energy to help people and I have found it very fulfilling. So that has really helped me. I know at work every day I encourage the medical students and the residents I work with to ask me questions about LEMS. I encourage and tell them openly about my symptoms, hoping that they will be able to diagnose someone one day down the line and they won't have to wait years for a diagnosis.

I actually even have a LEMS tattoo on my arm. It's lemons because we jokingly call ourselves lemons, L E M S for LEMS it's to remind me when life gives you LEMS, make lemonade

Kevin

Price, you've got a different life experience, much more life experience. Your story was longer. How have you brought that life experience and all the skills and experiences that you had to this community?

Price

Kevin, I'm glad you asked that, because I've been in the communications business virtually all my life. I walked into a TV station and saw TV cameras and the lights and all that. I was 10 years old and wanted to be in TV and made that happen. And so just communicating is in the blood. That's just a natural extension for Lambert Eaton, wanting to communicate and be in a community and network and it's just, it's self-fulfilling for you, but it's also, you feel like you're sharing, you’re sharing your knowledge. And I would say, you know, I think something common to people who have been in the medical field like Ashley, and like I was for just a bit, I found have a very altruistic sense of helping people and getting satisfaction from doing that. It's just part of us, I believe, to want to reach out and not only be a part of community, but contribute and guide in the community

Kevin

So, it's very interesting that both of you, you know, chose advocacy and how to step forward and fight for yourself. And both of you have health backgrounds. What would you tell someone who doesn't have a health background about gaining that kind of confidence to step forward?

Price

I think it is interesting that you mentioned that Ashley and I have these backgrounds, which would lend itself to what we're doing. And I, I kind of see the point where if that wasn't a person’s, their natural bent, it might be more difficult. It would be more difficult. It would be good if the neurologist in some way was able to encourage on that first diagnosis. If the neurologist could encourage this newly diagnosed patient to step out, do the research, learn on their own and get involved.

Ashley

Usually, You're the one that has the expertise on your diagnosis. And I say that, meaning you have an advantage that others don't have. Most of us have done our own independent research and know everything we can know about our diagnosis. And you'll meet some doctors and students and people who've never heard anything about LEMS. You likely know so much more than them, and you can use that advantage

Price

We as patients, we're the ones that have the disorder. We know what's going on. I can guarantee you that most medical professionals that Ashley or me or any LEMS patients are going to run into doesn't even know about it, doesn't know a thing. I've had, ER, doctors send second year residents in for me to tell them what LEMS was. I've had them show up in my bedside when I'm in the hospital and asking me to tell these medical students about LEMS. So, we're the ones that have the knowledge in a lot of cases. And that's a real strength.

Kevin

Love that. And I love that you each brought something really different to the table. You had certain gifts, certain things that you could contribute and to bring those. And you know, as we've talked today and, and in our earlier conversation, it's pretty clear you guys have become friends through this journey. You talk to each other in, in a great way. You've got rapport. How important is friendship in LEMS?

Ashley

It's something that's been very helpful for me, especially having Price to kind of go back and forth. If we have a new, like for instance, if I have a new symptom, I might call Price and say, “Hey, does this happen to you?” And we're able to kind of bounce ideas off each other as to what might be something we could do to help us. I know in the past Price and I have compared our, IVIg routines, and we've been able to kind of fine tune different things to help each other out. Like one of the things I do is I always bring these electrolyte packets with me to add to my water, to make sure I stay hydrated and Price ended up we found one that would work for him and I think it's helped him a lot. So, it's been really fulfilling to have friendships with LEMS. I have another friend who lives in California, that's my age. And it's just been really nice to have someone that understands

Price

When I was diagnosed immediately. I think maybe the day of, I probably got on Facebook, social media, because I had been on special interest groups for other hobbies and such. And so I, I knew there were communities in the social media space and there was, I believe three LEMS groups at the time on Facebook, and I think I joined all three of them. That began my networking and my meeting people who had Lambert Eaton because otherwise, even though I'm sitting here in the middle of the Dallas Fort Worth metroplex, how am I going to meet another LEMS patient? You know, there's 3000 maybe in the United States, where am I going to go and meet somebody?

So, through the Facebook groups, I started meeting and making friends with people and then just a natural extension you maybe get close to one person or another, maybe you're emailing or maybe we have a shared kinship. I can't tell you what it was like to meet my very first LEMS patient. I'm getting, I’m cracking up. Huh. It was that emotional.

Kevin

Creating new friendships, creating a network, finding resources through each other. All these things happen because you're connected and you're part of the community. Can you give a couple examples, or talk with each other about what are the other benefits that getting involved has created for you?

Price

We learn from them as well because we see problems that they're having and you know, somebody's having a problem getting a diagnosis and they don't know what to do. Well, I kind of do know what to do. And so you help them out, you know, you give to the community and, and in turn it teaches you that, hey, I've got to be proactive too. I've got to look after myself. I can't be like, you know what, I'm what I'm reading about, what I'm hearing about. I've got to look after myself. I can't take no for an answer. This isn't working for me and what else can I do? So, it works both ways, all that information, all that kinship flows back and forth. And that's the beauty of it.

Ashley

So aside from friendships, I found it really fulfilling to be able to help others, especially people that are not in an area where they can find a doctor to help them

Kevin

Before we close. What is one piece of wisdom or advice you'd like to give to our listeners?

Ashley

So, I would say to be your best advocate, do your research and don't stop until you get an answer you're looking for. Even if you go to 50 doctors and no one wants to listen to you, you know your body better than anybody else, and sometimes you just have to be a little bit pushy. But sometimes that's the only way things get done. So just keep trucking and do what you can. Do lots of research, Google, join Facebook groups, join networking groups, talk to as many people as you can.

Price

I just think it's very, very important to make sure to be, let it be known that a person really has got to look out for themselves and not settle. Now, that's kind of what Ashley said, but it's so important, you know, especially if you're isolated, I think it's so important to reach out and network, if there was anything that I did when I got a, the LEMS diagnosis there, besides talking to my neurologist and getting the medication, the most important thing I did was reach out.

Kevin

Well, thank you. I think it's a really clear theme there that connecting with others is there. And I just want to thank you so much for your time for this conversation, for your stories and for the contribution you're making to help others with LEMS, you're really making a difference.