Kevin (00:02.279)

Welcome back to the Lems Aware podcast. Today we're talking to Patrick, and Patrick's got a really tough job. He's got to interact with people all the time. He's got to have energy to do it. And he's going to tell us how his diagnosis of Lems affected that work. I'm so glad that everyone joined us back. It's a new year, and we really love talking to you. So Patrick, can you tell us a little bit about yourself?

Patrick (unknown)

Kevin, yes I can. Good evening everyone. I am Patrick. I am here locally in Bakersfield, California. And I am getting ready to be 50 years old next month. And been with this LEMS situation for approximately 15 years now. So I work with Alternative Education and an alternative education program. So I am working with youth that are age grade level six grade to 12th grade. It is an everyday program, year round. The individuals I work with are all considered at risk for the sake of words to use. And some of them are on probation, active probation, and some of them are not. They're here on a referral basis in a case where they will need to stay with us for at least six months, which is a semester, and then provided the fact that they took care of all the regulations that has been imposed to them, they are able to go back to their traditional homeschool. While they're here with us, we have several different things that we can do with them for one, make sure that their academics are up to par, they're earning the credits that they need and then they're taking care of certain programs such as anger management, substance abuse, as well as any of their special ed needs and things of that nature while they're here with us.

Kevin (02:15.475)

How old are these students?

Patrick (02:18.754)

The youngest I'm dealing with right now is in the sixth grade. So that is 12? Wait, what is it? Yeah, 11 or 12. I think he's about 12 years old. And then my oldest right now that I'm working with is 19. Considered a fifth year senior.

Kevin (02:26.299)

Yeah, 11 or 12.

Kevin (02:38.715)

I was going to ask if they can go beyond their senior year. And so you already answered that. The other question I had is, can they cycle back through? Like, do you get to know these kids over and over again?

Patrick (02:52.778)

Most definitely. When you're talking about can they, how long can they be with us? Well, the fifth year senior is considered with us because they had continued enrollment. So once you turn 18 and we don't drop you for any situation, then you can stay with us until you complete your high school diploma. We focus on the high school diploma. And then if you happen to drop from us, then we send you to our adult school and that's where you'll have to finish up your high school diploma and or go ahead and take the GED then. Yes, our students recycle back with us. A lot of them get used to our type of a program. It is a smaller program and they will transfer back into the traditional school setting and there are some that will completely self-sabotage and they'll end up coming back to us for a number of reasons. And sometimes it's done on purpose, to be honest with you. It's just one of those things where I need to be in a smaller setting. And so what can I do to get back over there?

Kevin (03:52.851)

Yeah, just to get the attention that they're seeking. And what do you actually do? What's your role?

Patrick (04:09.53)

I have a new role, my goodness, and it is a deep breath taker. I am a community school outreach and engagement facilitator. So it is a brand new community schools grant that we had been awarded back in 2022. I actually just got into the position February of 2023. And I'm coming up on that year. and that will satisfy my probationary period for the position. It looks like it's in good standing, so I'm proud about that. But this job entails me working with the community at large, bringing in resources to support the students that we have on our sites, as well as the family as a whole. So it is one of your wraparound services that I get to do on a daily basis. It is challenging in a sense of knowing that a student is coming to school and they haven't ate or they didn't really have a bed to sleep in or clean clothes to put on, hygiene is not up to par. Just the idea of low income, yes, for sure, but also just the troubles that they're faced on a daily basis, even just trying connected with a couple of agencies who take referrals for certain students in certain situations that they're in and some of them are gang related, I will say that. But they'll try to mentor them, get them on the right track, get their services, help them with the services that they're needing. And my other portion of that is actually trying to get the parents more involved. We have noticed that the lack of parent involvement is tougher for us to reach the students. because that means they have like no support. So we're doing double duty when the parents are not involved with the guardians. And so I'm trying to work the magic on both ends, getting the student to realize, even though they stand in a bad position, that doesn't mean that it's gonna stay that way. And then the parents to like, hey, wake up, give your student a chance. We know that we can make them successful. We just need you to pat them on the back with us while we are cheering them on because all the small wins is what we're trying to get. And once we get so many of those, the student realized like, I can really do this. So my job is rewarding in more ways than one, but then there's some cases where it's like, that was a very sad and traumatic situation. So I have to kind of bring myself back together again.

Kevin (06:53.919)

Well, you just listed so many things that you need to do in your new role, which is community outreach. And it just, that's an overwhelming list of tasks. That's a lot to do knowing that each of those, each of those kids, each of those cases coming through each of those families is separate and different. So that's got to be a tiring day, just on its own. But when did you first notice that you were having symptoms of LEMS? And what were they?

Patrick (07:33.434)

knowing what it is and what it was or what it was panning out to be, it was the, I want to say it was early as 2012 to be honest with you. I'm a very active person, not saying that I'm a gym person where I go into gym several days out of the week, not that active. I'm active in a sense of working hard, traveling as well as some exercise here and there, but being very active also in the church. And with that, I was on the baseball team for our softball team. So I'm the pitcher as well as center field person and every now and then I play first base. Well, this particular game, I'm pitching almost all of the innings, but my pitch started to get really um, lazy. I wasn't hitting the mark and um, I still finished out, you know, tried to finish out pretty strong, did that. So I kind of noticed, you know, throughout that particular game, how my run was off when it got time for me to swing the bat. That was a little bit off, um, trying to catch the ball and throw it back. So all those things were off in that particular game. The next game, which was a week later I'm doing pretty good. I don't know if it was because I rested well before the game or what was the, but there was a difference that I noticed. And so I did this for a year and even from not playing softball with the church, there was things that I was doing inside the church. We have stairs to go into the choir stand and I've noticed that I couldn't pick up my feet completely to walk up the stairs. There'd be a slight trip or took me longer to get up than normal. So there's little small things that took place that I was noticing but also not necessarily paying much attention to. And go ahead.

Kevin (09:53.875)

How old were you when you were noticing this?

Patrick (10:00.898)

Yes, I did. I'm thinking I was 30. Oh goodness. I want to say I was like right at 38. 38 years old. I was one of-

Kevin (10:11.263)

So this is about 12 years ago.

Patrick (10:14.006)

Yeah, it was about 12 years ago. Yeah. I was 38 years old. I want to say when I started going to the doctor, he was like, you're one of the youngest persons I've had for this whole muscle thing that I had going on. So again, I really was unaware. And what made me go to the doctor, actually, is I actually fell out of the blue, like just boom, hit the ground. So that was. like that was weird. And so then I made a doctor's appointment and was telling the doctor, like I was telling you how playing softball, there was a difference in how I felt and how I was pitching, how I was catching, how I was running, walking to the choir stand, up the stairs, down the stairs, stepping off the curb. All those things were feeling different than my normal routine. You know, most folks, they just get up and they just start walking. And It's all normal. You know, you lift your feet high enough to get on the curb. You lift your feet high enough to walk up the stairs. But I had to literally concentrate to do that. And so that felt really different for me. So they transferred me to a neurologist in town and that was going back and forth with different types of medications. I saw a rheumatologist. One of the best in Bakersfield, I've drawn a blank on his name, but he was like, no, you don't have arthritis. You don't have this. So he sent me back to the neurologist. And one of the first things I did was I... I did a test, an electro test. So they put all these pins and did this test for me. That didn't come back with anything. And then his next test was for me to do a muscle biopsy. So did the muscle biopsy out of my left thigh and my left shoulder. And from there, I was going kind of like back and forth a little bit so he can show the results to the rheumatologist. and then just he himself. And at this point in time, I went out of town. So I had the surgery done, healed pretty well, did physical therapy because of course they took the muscle out. Went out of town and I was in New Orleans, summer weekend, it was like 4th of July weekend actually, and I fell again. So this particular time, you know, everybody's like, All right, that's it. We getting you back home, we gotta figure out what's going on. Because there was things that was happening on top of the fall. My face on the left hand side, my eyelid drooped and it looked like my face was sagging, like something majorly had just took place. So I get back home, I get an emergency date and time to meet with the doctor. And I'm sitting in the chair and he's sitting on the bed and he's talking to me like, how's it going? What's going on? You know, I see you got here on an emergency and I have transition lenses. So you really couldn't see my eyes because they hadn't changed from me coming outside from the sun. And so as I'm sitting there, I'm talking to him, telling him what was going on. And he said, you sound a little bit different. Are you feeling different? And I took my glasses off and I said, yes, that's what I'm here for. How can you? help me understand what this is. And he looked at my face and when I tell you, he jumped and ran to the telephone. He was just like, we're getting you to LA. We're getting you to Cedar Sinai. And then that's when the next journey started, is getting back, getting to LA, which is about an hour and a half drive south for me to meet with a doctor there. Cause he was like, whatever this is, I have no idea what to do for you. And so he referred me to Cedar Sinai.

Kevin (14:27.219)

Did he tell you what he saw in your face that stimulated him to do that?

Patrick (14:32.658)

He thought I had a stroke. He was like, did you have a stroke? And I said, no, I haven't. And if I did, I mean, I didn't see any emergency people for it, you know. I said, I was out of town. I did fall. I bought a cane, walked around with a cane, but then I rested the last day. And then I got back home and I called you. And he was like, okay. And yeah. It was a while. It was a while. It really was.

Kevin (15:05.339)

So that's, on one hand, you're going to all the specialists in the local area and they seem to be doing tests and things, but then he just said out to you that, I don't know what's going on. You got to go to a real specialist. So how did that go when you got down to LA?

Patrick (15:19.622)

I ended up going to LA, no joke, three or four times a week. Blood work, after blood work, stool samples, other tests, exercising tests. I mean, in one day, I did 15 vials of blood just for the person to take every test possible. I even had the lumbar where they took the fluid out of my back. And so I did this for approximately two years and in that two years, doing all of the blood work and all of those things, all of the samples, the PET scan, the whole body scan, doing all of those, I had an emergency surgery being done and that emergency surgery was for them to remove my thymus gland. So I kid you not, I was there on a Tuesday. I did the full body PET scan, went back on Thursday. They read the scan for me and said, it looks like your thymus gland is giving you an infection, which is probably the cause of this autoimmune situation. We're gonna need to do surgery to get it removed. Went right back on Monday morning, four o'clock in the morning and had it removed. So it was like boom, boom. I'm. Here is let's take this thing out because it's affecting him.

Kevin (17:11.363)

Wow. That hasn't been anything I've heard of before where thymus is involved, but something must have been going on and you were getting all those tests. But that wasn't the end of the journey. This is a long journey you went on, isn't it?

Patrick (17:28.106)

Yes, yes sir, yes sir. You know, once I kind of got that situated under control, I didn't have to go weekly to Cedar Sinai, but it was still at least two to three times a month. And my uncle, he is a trooper, he took me every single time. He stayed down there when I did have the surgery, because when I had the thymus gland removed, I was there for about two days and then I was able to come back home. And then from there, I did what they call plasma pharesis, but I was able to do that here in Bakersfield. So that was a good thing. So I had the portacath put in on the right hand side, had to sleep sitting up for several months. I went to our center here and I got hooked to the machine to do the cleaning of the blood and things and I was on the machine for at least two and a half to three hours um three times four times a week and then for the first month first one two and a half months it was four times a week and there were times where um they had to put more give me IVs um just it was kind of like a crash situation, I was just zoned out. It's like I could not get it together. No energy, no anything. So there was a couple of times where I get the IVs, ginger ale or peppermint, something to just kind of get the blood and just was flowing all over again. So I did that. And then after those two and a half months, they moved me into where I was able to go. I went three times, but it was like every other day. And then it decreased to like twice a week. So there was times where I would be able to drive myself, but majority of the times I had someone take me as well as pick me up, because it just, it didn't work. There's a couple of times I left my car there, you know, because I just could not do it.

Kevin (19:40.775)

Wow, so this must have been impacting your job and your work life quite a bit. All those trips to LA and then having treatments in Bakersfield, but every day for a couple hours, that's pretty time consuming. How did that go?

Patrick (20:00.706)

It was. It was. I, um, well, the first portion of it of me trying to get back and forth to Los Angeles, those appointments was, you know, it's a whole day leaving early in the morning on the road, getting there and being at the doctor's office half the day, what have you. So those days, I burned a lot of sick time. Prior to this, I don't think I've ever used my sick time, to be honest with you. Out of all the time I've been working here, I don't think I use sick time. And now all of a sudden I was just like using it, using it, using it. And when I had the plasma pheresis situation, I was actually off work for two, two of those, three of those months, I was off work. And I got to the point where they were actually gonna do the catastrophic leave for me and donate hours to me. But I exhausted, I exhausted all of my sick time. And then I just went into my own vacation time and exhausted that. And so, My director at the time, very good person, was just like, you know, Patrick, well, if you need it, I can get this letter out to everybody. I'm sure there's gonna be people that will donate for you just because of who you are. And I was like, you know, I really appreciate that. I really, really do, but I want you to do that at the very, very last moment. I wanna be able to use the hours that I have, the sick time that I have, I'll use it. But you know, tell folks I greatly appreciate it. And there were some people that really kept in contact with me a whole, a lot as well. And then I was able to go back to work and it was like that last draw of I have like four hours left, you know, vacation time, then I'll have to deduct the tech, the check or not, or have to ask for hours from people. And so I was able to get back to work and then When I did the plasma for the last couple of months, it was always after work. So that helped out a lot.

Kevin (22:06.483)

So when did you actually find out you had LEMs? After all of this and all these different theories that they had, and maybe they were treating other things that were going on with you, but when did you actually get the diagnosis?

Patrick (22:22.57)

The diagnosis actually came three years after traveling back and forth to Los Angeles. It was right before, it was actually right after the thymus gland was removed. When they said that it was called auto LEMS Lambert Eaton Myasthenic syndrome. And I was like, okay, and that means, because it's such a long word, I was like, what? But it was right after the thymus gland was removed.

Kevin (22:51.279)

And how did they actually diagnose it? Did they do any specific test or did they just kind of narrow it down?

Patrick (22:59.746)

narrowed it down after all the tests that I've had. Like I said, I was doing a lot of blood work every time I went. The lumbar fluid from the back, the thymus gland. So that all those tests that I was doing, they had me walking down and up and down the hallway of the hospital. They had me doing a strength test. So after narrowing all of those things down, looking at the results from the muscle biopsy, that's when he said that it was autoimmune redopathy. I mean, I'm sorry. That's when he said it was LEMS.

Kevin (23:35.291)

Yeah, you just mentioned autoimmune retinopathy, which you mentioned before we came on, before we were recording, that you're now dealing with that as well. So you've got a couple autoimmune things going on there.

Patrick (23:48.358)

Yes, yes, yes. And that one has been my last challenge of the last three years. So prior to that, I don't know if anybody has done this, but I actually got a chance to go to Miami, Florida, and it was on a study of the LEMS. And I participated in this study with them, and they, too, agreed, yes, this is LEMS. I was there for just a week. But. It was a good experience of just meeting other individuals who had LEMS as well. I've actually go to the coffee breaks and meet with individuals from there. And I've also done a workshop in Los Angeles area. My doctor was speaking at the time and he invited me to listen and meet other individuals. So it's been a journey, but it's also been a collective experience of talking to individuals who had either more severe situations than I had and or are doing a lot better like myself in a sense.

Kevin (25:07.439)

Yeah, that's one of the reasons we do this podcast is to let people know there's other people out here that are dealing with LEMS and you can get to know them. And it's pretty cool how all the people you've met as you told your story, you just kept talking about different people that you met. It's like a whole crowd around you now. that somehow were involved in your case.

So what have you had to do to make accommodations at work now?

Patrick (25:42.947)

Accommodations that work now is making sure that I move a little bit more than what I was doing because I've noticed that I sit at a desk so I don't necessarily have to do a lot of running around but sitting entirely too long the achiness of the muscles. kick in. But if I'm up and walking here and there, going across the campus and just to keep moving a little bit, then I'm pretty good for the most part. Now, when the fatigue sits in, that's because I've actually done too much. So I have to keep that happy medium, to be honest with you, throughout the days. There are some days where it's they have me going back and forth because on the location where I'm at, there's three sites. And with my new position, I'm in charge of all three sites. But prior to this position, I only had to work on two sites. And it was a lot going on. So I would barely sit down and actually not get a phone call or a radio call to come and do something. So I would go back. So in that situation, I got to the point to where when I was going to the doctor, letting the doctor know what was going on and how much work I was doing, he actually advised that I was not toting, carrying, picking up, pulling things over 10 pounds. And I was like, but that's tough. I mean, my job, there's going to be requirements of me doing some things that are going to be 10 pounds or more, you know. And I listened. Of course, I want to be hard-headed. I will not negate that but I did listen because I realized when I was being hard-headed about the situation I get home and I would zone out, fall asleep on the couch, still got shoes on, you know and wake up hours later like man I slept long you know and it was because I was excited extremely tired so I had to now you know just move but not exhaust, Exhaust myself go over exaggerating myself So I have to like put little balances and then I've used of course How we all have the little rings on our phones and tell you oh you need to walk it's time for you to Move your arms and move your legs so I can I use that every now and then Just to balance it out

Kevin (28:33.011)

So what tips and tricks do you have for other people who have LEMs, other professionals, that they might benefit from?

Patrick (28:44.334)

Hmm, that's a good question. One of the things I stayed with, to be honest with you, is a smile. I kept smiling about the situation because I knew it was not going to define who I was. I felt and had some encouraging folks to tell me that I had a lot of work ahead of me to do. And so I just kept that in the forefront of like saying, you know, I cannot let this defeat me. I cannot let it define who I am. So I kept a smile on my face. Um, I kept thinking positive. I kept thinking about ways to, you know, make it better, uh, where I won't hurt so much. Cause you could see it in my face. Like you're tired, aren't you? And I'm like, yes, I am. Um, your body hurts. Yes, it does. So I had to really. pinpoint how far I can go before that starts to, that look gets on my face or that walk becomes a wobble. So I have to do that. And my tip to anybody is, understand what that looks like for you. Look at yourself. I wish sometimes we can just have a mirror in front of us as we're walking to see it, but just pay attention to when that wobble starts to come on because that means, One, you probably haven't taken your medicine in time, and or you have really done too much. And then the other part is make sure that you find some happiness, because it can be very depressing that you can't do certain things. So find a hobby that you enjoy, a craft that you like doing, music, something that'll keep that joy happening within yourself. And then, Surround yourself with people who can be very encouraging and not just take advantage of your situation so that has been one of the biggest things and I am a firm believer so The congregation was praying and everything so I just to put that out there But those who are not in that particular that particular situation It is definitely finding the other people that can be of every support to you I noticed that for me, when it came down to the medications, I was definitely on a timer in a sense of saying, okay, first thing in the morning, let me take this medication. And then by that mid afternoon, right around that 11, 30, 12 o'clock time, looking at what the rest of my day was going to be, it was like, okay, I need to take some again there. And then, you know, let her part in the afternoon about 3, 3.30. So it's like almost like every three, three and a half hours is when I took my medication. And that worked for me because again, working on a school setting, I was either, excuse me, out on the grass in the classroom, walking to the other side of the campus, presentations, what have you. So there's a lot of standing sitting and I had to balance that out to where, as you know, as I go about my day, how do I get chance to rest but also how do I get a chance to be ready you know and that thing is just definitely take some get some rest

Kevin (32:13.199)

Yeah, rest will help quite a bit. I'm just stunned by how diligent you have to be paying attention to what's going on now with yourself and thinking forward into the next few hours. Like what could happen in the next few hours? You know, do I have to, do I know I have a meeting over at the other site? Do I know I'm gonna have to go somewhere else? Do I need to go drive somewhere or get a ride somewhere? It's just constant diligence and that in itself can be exhausting.

Kevin (32:46.177)

You know, you just want to, you just want to, you know. So what's one, one thing you would like to leave with the listeners today?

Patrick (32:52.306)

Yeah.

Patrick (33:03.726)

The one thing I would leave is keep your hope alive. Keep it alive. I had met an individual who was in a wheelchair. This is probably one of the first workshops I went to with my doctor and there was a person in a wheelchair and I haven't had that experience but I did have the experience of walking with a cane. And I was like, I don't want to have to be relying on a cane every single step of the way. So I just kept hope alive that I would be able to walk without it. Now I will take my cane with me. Don't get me wrong. I will definitely take it with me, especially if I know it requires a lot of walking. Um, but I didn't want, I was trying not to let that be my every day go to. So. If you have this desire to walk without that cane or the desire to at least dance a little bit, you know, I don't dance like I used to, but you know, if you have that desire to dance a little bit, keep that hope alive because it'll happen. It will happen.

Kevin (34:22.847)

Fantastic. Thank you so much for your time, Patrick, and I wish you well.

Patrick (34:27.83)

Thank you so much. I appreciate it.

Kevin

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.