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. We are so glad you are back. Today we have the opportunity to speak with Peter Calore. Peter has been living with LEMS for nearly 20 years. He's been successfully treated and has found ways to adapt to LEMS. His story is a powerful message for LEMS patients and frankly, anyone who faces disruptions in their life plans. Peter will be discussing his treatment regimen. Every patient is unique, and your treatment experience may differ. To learn more about available treatments you can go to LEMSaware.com and click on the LEMS diagnosis and treatment tab. Peter, could you tell us a little bit about yourself?

Hello Kevin. and uh, I'll call him the LEMS listeners, as he introduced, Kevin. Uh, my name is Peter Calore and I was born and raised in the suburbs, Boston, Massachusetts. I'm now retired and uh, live a let's call it a happy life in Vista, California. And that's a suburb of San Diego and that's been since about 2013.

I was married to my college sweetie for over 50 years. And during that time we raised two sons who then extended our family to three grandkiddies, Over our 50 years, my wife and I have lived in four countries and six states. Including my time in the army and then in my career that was spanning several international corporate positions being retired and active. I expect to stay in San Diego for however long that happens to be. And now because all of my immediate family are now west coasters and of course, because it doesn't snow here.

<laugh>

So why don't you start by telling us a little bit about your day, your typical day?

Okay. Uh, interesting question. and just to start with that answer, uh, during my career prior to LEMS, it was hardly ever a typical day, but since LEMS, engulfed me, I'll say, and now being retired a routine and call that a typical day is essential, uh, in dealing with LEMS. Um, as many with LEMS may understand the most difficult time of the day is that wake up . My typical day starts with, uh, my LEMS meds, as soon as I first awake, whatever that time may be. I then return to bed hopefully to sleep for about another hour , This routine takes some practice and planning as I found out and an alarm set for the second wake up.. And since it's so simple, hopefully it'll help others face LEMS in the morning, wake up

If I was active but I'm guessing that age has changed me so that my body clock won't delay that any longer. It would be interesting to know if aging affects other LEMsers the same way and at what age. I didn't find any documentation. Neither has the neurologist about age changing it. But since many folks are afflicted a lot earlier in their life than I was this may be a, a good piece of, research anyway

Finally, on this question, about the typical day, I get stronger as the day goes on and along with the meds taken, I get even stronger If I'm active later in the day in these cases, the LEMS effects seems diminished and it's not my imagination. Um, at the end of an active day, however, LEMS gets its payback, with a rapid return first with overall fatigue followed by the other normal symptoms. So, an active day is important. You know you’re going to get overcome by the end of the day, but that’s fine. You carry on a normal life, and you go to sleep on time and you're back to the end of your typical day.

So can I understand that a little more, your activity gives you energy, freedom. From your symptoms throughout the day. And you can actually see that as you're more active fewer symptoms, but, when you get tired, you get tired right away and, and it's, it's time to go to bed. It's like immediate.

Exactly. It's like not quite falling off a cliff but falling off a table maybe. Yeah, that's fine. Yeah. A typical day, if you can stay active a typical day can be a great day. Uh, you just know at the end of the day, you're going to get a good night's sleep.

Wow. That's, that's very interesting to know. And you called it body magic and body awareness, your body talking to you, that's like such a clear signal, that just you, you know what to do, but eventually your body says it. It's done. Let's wait for tomorrow. So, tell me that. So, you just told us about what your life is like now with LEMS and with your treatments, but what was your life like before LEMS?

Ah, little history here, and, you know, actually I'm having, and I've had a pretty good life. And even now that I'm dealing with LEMS, I think, and actually I know that my daily routine and LEMS meds are sort of a lifeline I'll consider it a lifeline, allowing me to be productive and able to do almost as much as preLEMS. I'll get into a little more detail, but I hope this part of the story kind of reflects my outlook on life and illustrates why LEMSers can be somewhat positive and help themselves to lead as normal life as they had preLEMS. I think we just coined a pre-LEMS and post LEMS.

Hmm. All right. So let me expand that a bit. And, and just to say, as I've mentioned, I was born and raised in Boston, uh, near Boston in the suburb and I survived the active and normal childhood and a happy home, uh, through the 1950s and 1960s, without seat belts, bike helmets, and even eating, uh, wonder bread. So it was, it was the fifties and sixties, and we know all those stories. I earned a BS, Bachelor of Science and civil engineering from Northeastern University Boston. And anybody who's listening to this and knowing I'm from Boston, I can confirm that, yes, I'm one of those happy and obnoxious fans of the new England Patriots and the red Sox. I had to sneak that in. in 1969, thinking back in 1969, 2 very personal events changed my life, uh, as they would for most to experience this first, I got married to my college, sweetie, and I was inducted into the us army. As you may have realized the timeline for those events was during the Vietnam war era So era, so I had a hard choice of several challenging paths, uh, that face, uh, I think many young adults at that time I chose to serve with a thought that hopefully I could expand my skillset, with a unique job experience offered by the army Corps of engineers. And I've never regretted that path.

During everyone's life I think you encounter choices, forks in the road that you can never go back on. You can't ever reverse them. One is marriage and the other is army. And my third one was LEMS.

How long were you in the army?

I spent almost four years in the army as an officer. I reached the rank a captain. And during that span, one of my first jobs in the army out of, the engineer school was I taught surveying, no kidding, at the army Corps of engineer’s school in Virginia, and then, was assigned overseas. But prior to my overseas assignment deployment, I earned the, airborne or parachute qualification and was assigned to special forces and specifically to the first special forces group airborne, which was based in Okinawa. Uh, first special forces group is, well, um, special and unique in the army since it has a non-combat role.

And I'll interject here because I think as I say, I never regretted it, It changed my life and special forces in the army overall changed me and looking back, I can understand, how the experience, kind of built and reinforced my skills, my character, my self-confidence, all of this, I think over the years has supported my happy family life, my career success, and, has now proven to be the, can I say secret sauce in dealing with LEMS in everyday life. In the army, our mission was, directed by the us state department and the army, and was designed to win the hearts and minds of the population of what we then turned the third world populations of east Asia and the Western Pacific Island nations. Our mission was mostly civic action projects, such as temporary housing, , roads, electrical systems, water systems, clean water, and we were also the rapid response force for relief from natural disasters, mostly typhoons, but there was an earthquake during my time also.

So the temporary housing, role was very important, bringing in building materials for shelter, but also bringing in the food and the water to help folks get through the disaster. It was always interesting to see the third world countries, exposure to the army rations that we carried. find the chocolate bars, <laugh>. That was the big deal. my favorite, and my primary project, there was, and I'll call it my bragging rights, was construction of a heavy lift, runway about 2200 feet long on a very remote island called Hateruma Shima. It's part of the Ryukyu, or the Okinawa chain of islands. The Ryukyu islands is Okinawa and the rest of the islands in that group. this is strong along the boundary of the south China sea, in this project.

And you can see how this would affect you for maybe the rest of your life. As I think back to it, it was a mission that gave about 300, of the population on the island. They are very impoverished and isolated inhabitants of this island. we gave them emergency air access to food, supplies and medical transport, and it was intended to be an assist to help their, small island economy, the Hateruma runway at little aside here, the HaterumaShima runway, has the standard international call sign HTR, and I've got the hat, and it was upgraded by the Japanese government in 1971. It can actually be seen on Google earth and, the real, I think finish to that story is that as you look at it now, those humble and hardworking folks that I lived with and worked with for those many months have made Hateruma into a great tourist destination. It's a gold mine, their little runway. So, I guess I won their minds and hearts, maybe their hearts more than their minds.

<laugh>

And you got one of the first hats.

Absolutely. So, yeah, that's fun. Oh, man.

Um, that's, that's amazing what a story. I mean, it just kind of it gives such good background on who you are and, and how life prepared you for LEMS. So, but after you got out of the army, you also traveled a lot too, I think.

Right. Uh, after my army experience and back in the world, as we used to say, my career got on track and accelerated a bit. The army experience was self-confidence on steroids. So, and during my 40-year career, after the army, I traveled the world and lived outside of the us for seven years. I think right now my current travel count is 27 countries visited, including the five, from my time in the army. with all that I first worked toward, gaining my civil engineering credentials, that was put on hold, because once you have a degree, you have to get licensed, but all that went on hold while I was in the army, some of the army experience counted. But, as I say,, I worked toward gaining my, civil engineering credentials, which then led me to working as a site develop manager, covering construction and franchise recruitment for burger king corporation, and ran their expansion, push into, new England and upstate New York.

I was promoted from that position to do the startup and organizing of the burger king international development division in Europe, burger king at the time was part of Pillsbury. So, working through Pillsbury and burger king, the international startup, uh, was done in Europe and then carried on. I was three years in Europe. And during that time I carried on that same startup, development, for Asia working out of Germany, developing the startup in Asia, you, and then, from that assignment, I was I think promoted. I'm not sure if it was promoted or lateral, but they, I got moved to, uh, a four-year assignment to do the same in Canada, for burger king international. Canada after that time was just working off of the us assistance, but became their own, company, during that, four years, development assignment. So, I went from new England to Europe, Asia to Canada, and then I got recruited by taco bell in California in 1984 in a very similar development role managing, the development and, , the franchisees that were assigned to the stores. And that brought our first move to Southern California.

My career again with the same development role expanded again in 1996 with a move to Duncan brands, which is Duncan donuts and Baskin Robbins in Boston, back to Boston. And that role was to design and implement, uh, new business processes, a kind of a brand upgrade, which you see today. Duncan was an old tire brand. And during that period from late nineties into the early two thousand, a lot of upgrades were made, and you see the results today. So I had a lot of new and varied projects which brought fun to my work., if your job is fun, you'll feel like you've never worked. And I was sort of having that fun, although it was a lot of travel, obviously levels of frustration, but we are making an impact. And my career now takes me to the early nineties. And I thrived in that until, I hit the, what I call the LEMS wall in 2003, I took leave as LEMS was diagnosed and then treated, I returned to work in a new franchise development and consulting role for Duncan brands until I retired in 2013 and returned to California that same year, 2013. ,

So you went, you went all the way around the world all the way back to Boston, and then came back to California after you had picked the place you wanted to live. Right. You had picked it out. Um, so how old were you when you were actually diagnosed with LEMS?

How old were you when you were diagnosed with LEMS?

Uh, Kevin, I was a happy 57 years old in mid-2003. And at the top of where I wanted to be with my career, um, my LEMS diagnosis, didn't come easily. It took several months and several detours through testing and treatments, starting with, suspected MS, with MRIs, pet scan, and spinal taps, and then treatment from myasthenia gravis. And IVIG and infusions every week, but nothing helped. By the way, 2003, I was diagnosed with celiac, which is the, the gluten free credentials. Uh <laugh> if you call it that, that was in, uh, early 2003. So that, being an autoimmune condition may have been the first signal that my body was malfunctioning in some sort of way and if I can describe it that way, the LEMS diagnosis came in February, 2004 from a specific LEMS test that was done through the Dartmouth medical school in New Hampshire, uh, and verified through the Mayo clinic in Minneapolis.

The first indication of what turned out to be LEMS was in mid-2003. And as I mentioned earlier, the diagnosis actually came in February of 2004. So here we are in the middle of 2003, I had difficulty swallowing and sort of a light flash in the corner of my eyes, most of my right eye. So, I was first sent to an ophthalmologist, uh, because of the eye flashes, but then full bore of LEMS actually hit me literally overnight. I was in Japan with my wife, visiting family in September of 2003. I awoke one morning, and my legs were weak. I couldn't balance. I got better and strong as the day went on and we tried to seek local medical help. Unfortunately, with no result from the local medical system, I rebooked, I returned to Boston, left Japan immediately with my wife and back home We immediately went to my primary care doctor at Dartmouth Hitchcock medical center, at that time, our home was in Vermont. So, Dartmouth medical center was close by in New Hampshire. If you look at the geography, so it was, and it's a very highly recommended and reputable and teaching hospital.

I was admitted to the hospital that day for exam by a neurology, neurologist and the whole neurology department, I think paraded through over the course of that day. The first suspect was actually a possible toxin from a fish common to Japan. So, the question was, what did you eat? My symptoms also fit the MS profile. So, the MRI and the MS testing, including a spinal tap was done, I was observed and tested for two or three days, and then released with a follow up based on myasthenia gravis, which was their best guess at diagnosis at that time. I was also referred to a nearby VA hospital for a toxin test related to my, possible exposure to a chemical called agent orange. The nickname was agent orange that had a long name that ended in toxin, that was used by the military as a jungle defoliant, which, kills trees so that aircraft can see the ground, I guess. I really had no knowledge or proximity, no knowledge of, or proximity to this chemical, but the army duty location, made it a possible cause of my condition. So, according to the doctor who spotted that possibility, better to be safe than sorry, and that was negative.

Got to, got to agree there that they, they took care to..

Ensure that something that you didn't even weren't aware that you could have been exposed to. Absolutely. So, I'm glad to hear that. And by the way, thank you for your service. <laugh>

You're very welcome. My service treated me well, thank you. Um, yes. And, and the, the fact that most of the neurology department paraded through my room, I give credit to one of those doctors that mentioned agent orange. So, I've learned a lot about it, but it came up negative. So that was one of the good things. So anyway, during this probing for a diagnosis, my wife was, I would call my total support because I was unable to drive. I couldn't walk steadily. I couldn't stand for any length of time without losing my balance. I was losing my leg strength. I could read a bit, I could watch TV and be online for maybe, , five minutes at a time I had, of course I had the double vision and eye flashing. So, it's a little tough to read and watch TV, little entertaining, but not effective.

I was very cautious while eating due to the chewing and swallowing difficulty and by process of elimination, I'm supposing that by process of elimination, a LEMS, anybody test series was done. And I really think looking back on it, thinking about it now they were fishing, and it said, let's try this LEMS thing. Dartmouth Hitchcock had no experience and never had a LEMS patient. So here they were fishing a little and thank goodness because it was done just prior to Christmas in 2003, and the results came back in 30 days, February 2004, and the result was lit up with LEMS.

Wow. So the whole story of trying to find the diagnosis just seems like it would be, frustrating anxiety producing,, just, just a terrible journey. How did you and your family react when you finally had a definitive diagnosis?

You just described it very well. <laugh> about the reaction, but, uh, it's hard to recall, my reaction, my family state of mind, but thinking back, I think I was probably relieved, because we found out what it was and a little frightened, because, what does LEMS mean and what, what was the long term? What was life going to be like family was always was very supportive and, they tried hard to keep me positive and keep my sense of humor. my wife is my primary, lifeline watching and helping every step of the way to the diagnosis then got me organized, and smoothly into my new life. I got along that same line I got great support from all of my Boston brains to the family and from our two sons in California. So, uh, yeah. Um, everybody joined in to help me get settled into the new, new life, uh, with the LEMS condition and, uh, family and close friends, I think all made it much easier as you can probably imagine.

You also mentioned, as you were talking about the diagnostic journey that they were treating you with things that weren't working. So how did things change once they had the right diagnosis?

Well, um, so the LEMS treatment began, and it was surprising to me at the time because it involved only the meds taken by mouth. And I'm still amazed that days after the LEMS test result in February 2004, I struggled to get to the neurologist office at the hospital. I was given my first ever LEMS med

And I think it's important to note that as I have aged my body signals me that a dose is due.

So have you been able to travel again?

I've continued to travel over the years with LEMS and as a device to others, I carry a three to four day supply of LEMS meds in my car as part of my earthquake kit. I call it my get stranded kit. Earthquake kits are essential here in California. If your, uh, if the freeways and return route home become blocked after an earthquake, I actually had an occasion to use my emergency supply in my glove compartment, uh, when the freeways were blocked by a major brush fire. And my return home was delayed by about 12 hours. So, I would've been out of meds if I didn't have it with me,

I had my daily dose. I was getting up to the last dose. I had no more if I didn't have it in the glove compartment, after 12 hours, I was able to get home. So, you never know it's sort of the, uh, I'll call it the LEMS airbag. It's there in your car if you need it.

And if you move back to Boston, it can be a snowstorm kit.

Don't remind me about snow <laugh>

Hmm. So, tell me, Peter, what have you learned about yourself since you developed LEMS?

Um, let me put it this way. You recognize your limits, but don't limit yourself. Um, I try a new activity and expand on my current ones. Um, I have a new adventure and I do whatever I can to maintain a comfortable lifestyle. life changes, but it doesn't end. I've attempted to do things, and I, I try to make LEMS a side issue. I talked about this once before, but I think there's a life lesson, maybe a metaphor in the airborne and parachute training, that I went through. when something is new and difficult that first step is the hardest. Once you take that step with the right mindset and the right resources, like a working parachute, gravity and momentum take over, okay, it's a bad metaphor, but it's very true. You'll be proud of yourself having managed to live well with that tough LEMS obstacle. life I think throws stuff at you, whether you expect it or not, you'll have to deal with it, so deal with it.

Hmm. So just before we close, what's one last thing you'd like to share with our listeners?

I'm hoping that my story takes hold and influences someone, at least one to improve the life,, of at least one,, LEMS patient. And I've avoided the, what I call depressing term LEMS sufferers until just now and a positive mind positive mindset can do wonders beyond just the meds and any outside encouragement. So don't be a sufferer

I know that LEMS patients experience Lambert Eaton myasthenic syndrome differently. Everybody has their own experience. You seem to have set a very high bar for yourself for, for living with LEMS. And how do you do that? And, and how does someone find that positive mindset?

Because when something like this is embedded in you, it's hard to really explain it, but let me go back to a comment I made earlier and that is, I recognize my limits, but I don't limit myself. I know what I like and what I can do. I work that into my daily life I know I get stronger as a day goes on. I know if I travel, I have to do this changes schedule. I set my bar where I feel my limit is. And there are a couple of things that I don't do, but I enjoyed before LEMS. One is golf. I attempted to play golf after I had LEMS and I amazed myself, it changed my swing. I was a better golfer for about three holes. And then a grip problem, which is the strength of, your hands and your grip obviously, became a problem.

So my limit now is three holes of golf or maybe just putting that's kind of an analogy, but you see where I'm going. It's I know I can drive and, and travel for six hours at a time, not nine or 10, six or seven I know I can do air travel through time zones if I adjust. So, I know my limits, I may have a higher, level of ambition, for travel or doing things. I have a part-time job, delivering packages for Amazon. Um, and I know my limits there, but if I'm working for three hours, it's a three hour route, which is very comfortable for me. I know my limit. I'm not going to do a five-hour route.

I'm going to do a three hour route, but I also know that that's part of what I would call my LEMS therapy because I'm getting in and out of my car, 30 to 40 times in three hours, walking upstairs, downstairs, moving, twisting, lifting, not huge weights or large packages, but just going door to door, basically making the deliveries. And the, the only downside there is that I with LEMS, I can't outrun the customer's dogs, but I probably couldn't do that before. Anyway, <laugh> but I am, I, am I answering your question? Because I think that every, obviously everybody is different. My mentality is I know where my limits are. I may push 'em a little bit, but I know, I know the schedule of my meds. I know that I'm not 40 years old anymore and I know what I enjoy. That's how I get through it. I guess that's how I set my bar. That's where my bar is. Everybody's bar is going to be different, but I would encourage everybody with LEMS to push that bar up a little bit. it isn't just the medication and, the encouragement from outsiders, it's the, the will to do it and, , you know, live your life,

Life changes, but it doesn't end.

Thank you so much for sharing your story, Peter. We truly hope that you are enjoying and learning from our conversations with people from the LEMS community on the LEMS aware podcast. If you are, we encourage you to follow and rate the show on your favorite podcast outlet and check out the other resources on the LEMSaware.com website. We look forward to being with you again soon on the LEMS aware podcast

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