Epilepsy and Empowerment: Jonathan's Tale

Transcript

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All right and welcome back to another episode of Life Changing Challengers.

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As always, I'm your host, brad Minus, and today very honored to have Jonathan Tudor with us.

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He's an author, he's an executive coach, he's a management consultant, he owns his own management firm, triple P, and there is a big story behind that.

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I am super excited and Jonathan has this amazing story and we're going to dive in right now.

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Jonathan, as I ask my guests every single time, can you tell us a little bit about your childhood, the complement of your family, how, where you grew up and what it was like to be Jonathan as a kid?

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as a kid, yeah, at a bit of a, I'd say, interesting childhood.

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I am one of four children and three of us are triplets, so that's a fascinating dynamic all by itself.

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And most people then wonder well, is your other sibling who has a brother, the younger or older?

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And my response to that always is there are very few people that I think would willingly have children after having triplets.

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So he's older.

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I grew up in the Philadelphia suburbs, pretty what I would call normal middle-class life Parents, extremely supportive, both with their own careers, my mom later in life with her own career.

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But we were as children very close, particularly my triplet siblings.

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Just by nature of sharing a womb for that long had that additional connection.

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But yeah, it was a great childhood, pretty much anything that I ever could have wanted or expected.

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Any sports ice or curriculars stuff that you really enjoyed.

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I played a lot of tennis.

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I wasn't the greatest tennis player but I played in some tournaments outside of high school tennis.

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And my triplet brother and my sister played in college.

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So they were more of the athletes than I was.

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One of my favorite stories as a little kid which my dad told me when I was much older, was when we were throwing the baseball around in the backyard.

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He said at one point he thought I was hopeless.

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So if that gives you a sense for my athletic talents, those sports I did my best but I wasn't the most athletic.

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I played the piano for a little bit, nothing else really.

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From an extracurricular standpoint, what does your dad do?

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My dad actually just recently retired.

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He is a public finance attorney so he does a lot of municipal bond deals and that sort of thing Very technical stuff.

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But just recently retired, although he's still doing a little bit of work on the side, but always interesting to listen to him talk about his work at the dinner table, although I still don't fully understand it.

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It doesn't sound like it could be all that exciting municipal bonds and stuff.

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But you know what, If your dad can make it sound exciting, good for him, that's cool.

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So did you excel in high school?

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Did you do any extracurriculars in high school?

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Yeah, high school did well.

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In fact, an interesting side story I just reconnected with my 11th grade English teacher, who was my.

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She's actually in my acknowledgements in my book, just however, many years later she had that much of an impact on me, so really lucky to have a couple of really phenomenal teachers in high school.

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As I mentioned, I played tennis in high school.

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That was my main extracurricular.

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I played a little bit of piano, that sort of thing, and a big, huge Philadelphia sports fan.

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I'm going to throw that out there too, for your Philadelphia fans that are listening.

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That's exactly what I was about to ask.

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I was about to say Eagles fan, Of course.

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I've now lived in the DC area longer than I lived in Philadelphia.

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But once the Philadelphia sports in your blood, you can't let them go.

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I hear you.

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I, like I said, grew up in Chicago and I've been away from Chicago longer than I lived there and I'm still going to be a Chicago Bear fan, whether they win or lose and more lose than not but that's a whole different story.

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As long as you're not one of the, as long as you're not the stereotypical Philadelphia fan, I'm good with you.

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I was waiting for you to bring that up.

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Yeah, that's not me, but there are quite a few interesting fans out there, for sure.

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Yeah unfortunately.

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So what did you?

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I'm assuming you went to school.

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You went to college.

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Yes, where'd you go to school?

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George Washington University in DC.

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Yeah.

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Awesome, awesome.

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And what you studied, I'm sure you.

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What did you get?

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Business administration I did, yeah.

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At a BBA, double major in information systems and human resources with a minor in psychology.

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Oh, so not too much for workload.

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Just hung out, partied and did your school work.

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That was it right.

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Yep, yep Borg, washington University top tier school, just underneath Ivy League, next to Ivy League school.

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So yeah, I can imagine.

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So what did you end up doing right after school?

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So when I was, one of the great things about going to college in Washington DC is and one of the reasons why I chose GW is just the access to opportunities for work.

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There's just so much in in our backyard here and so I ended up getting an internship with KPMG Consulting my junior year in college and really loved the consulting work.

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And when I graduated in 1999, if you recall, that was the dot-com boom where if you had a pulse you were getting multiple job offers but I decided to stay with KPMG Consulting and then moved on to Accenture for about 12 years, but I really enjoyed the consulting work.

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I was able to get that great experience during college.

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So then after graduation, it was again my pick of what I wanted to do next.

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That's amazing.

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That's amazing, yeah.

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So I, a lot of people don't know this, so, and I tend to save a couple of little anecdotes for myself through these episodes, so I'm not giving it all away one at one time, but my day job is once I got out of the military.

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My day job is I'm an IT project manager and throughout my course of time and I've been a consultant basically the whole time, just basically anywhere from three months to three years I've stayed on a project basically the whole time.

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It's just basically anywhere from three months to three years I've stayed on a project and I've worked and hired apmg and accenture for certain things that I've done.

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When I worked for jp, jp morgan, I hired accenture.

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So yeah, so, yeah, so small world.

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A little bit of a good parallel there.

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So all right, so let's get into the meat.

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Something happened around what?

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Age 30?

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Yes, yeah Again, a lot of people ask me what was life like before this?

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Life-changing events.

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And as I look back on it again, I hesitate to use the word normal because that has so many different meanings to it.

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But it pretty much was.

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And I was working.

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I was at Accenture at the time, but I was working in my studio apartment in Woodley Park late at night as I typically did back then.

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I was working easily 80 plus hours a week.

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And next thing I know I'm waking up, slumped over on my bed which butted my desk, and I had no idea what happened.

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I shrugged it off to.

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I somehow fell asleep, which was very odd for me.

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I didn't typically fall asleep while working, even if it was late at night.

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So I just got in bed, slept it off, woke up early to finish my work, went to the client site the next day, which was in Arlington Virginia, went to the client site the next day, which was in Arlington Virginia, with the State Department and I was in a meeting with my client counterpart and we're talking.

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And the next thing I know I'm waking up in the ER and, as they described to me what my client saw, what he said was John was talking, his eyes rolled back in his head, his head hit the desk, he fell down on the floor and shook a little bit.

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That was the description, and the ER did the blood work and other tests.

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Everything was normal and we at the time chalked it up to.

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Sometimes the body does strange things and needs a reboot, right.

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I certainly didn't have any idea that it was anything serious, even with what had happened the night before, right.

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So now there's two events that are anomalies.

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About a month or two later I was traveling to Ottawa, canada, with the State Department.

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I was in a meeting at the US Embassy there.

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And again.

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Next thing I know I'm waking up in ER in Ottawa and the doctor walks in and says to me pretty brusquely, based on the account that was described to us and some of the previous events, you have epilepsy here is Dilantin and walked out of the room.

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Is that just the way they are in Canada?

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It's just abrupt.

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Hey, you got epilepsy.

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Here's your medication.

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I'm out.

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I'm sorry if you're Canadian listeners, that was just my experience in that Ottawa ER.

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I can't speak to all the clean hospitals, but and my mind was just racing and I couldn't even utter a word before he left, right, I had so many questions.

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Wait, epilepsy, what?

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I'm just gonna take medication now, like what.

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Some of my boss got a call from the Accenture security operations team, which is the, the group that monitors any uh, accenture people that were traveling overseas.

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So we were on a project that was putting people over the world all the time, so she would get phone calls from them frequently and the crazy story there is they called her and told her that, quote john tudor passed away.

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Um, when they meant passed out, away and out, changes the meaning of that sentence significantly canada have a different language because there's something.

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Are we missing something here?

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Yeah, I didn't make light of it, but I get it.

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Man, I can't.

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I just can't imagine and all that these.

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So we've talked about three different times and you have no recollection of anything.

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And you have no recollection Of any of it.

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No, and did you?

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When you woke up in the ER both times, did you feel anything different?

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Did you have a headache?

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Were you like?

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Were you nauseous?

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I was sore in parts of my body that I typically wasn't sore.

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That that was probably the biggest difference and I felt I felt a little foggy, but it's still I.

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At that point I still was very unsure of this diagnosis.

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It just seemed way too quick, with very limited information and, quite frankly, I didn't know much about epilepsy at that point, like many people don't epilepsy.

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At the time I thought, okay, grand mal seizure, that's not even the the medical term for it anymore.

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It's not referred to as a tonic-clonic seizure.

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But yeah, just wait what?

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Yeah.

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So when my boss got the phone call, she called my colleague who was with me and confirmed no, john's alive, he's just passed out.

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So we got that cleared up.

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She then called my parents, who then called my brother because they were both traveling for work and my brother got on a plane from DC out to Ottawa and came to the ER and took me back to DC on the next flight out.

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And then soon after I went to see a couple of different neurologists and decided on one who I really liked a lot.

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We just connected.

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Well, she seemed to care about my case and I asked her.

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I said why Dilantin?

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Because that was not one of the drugs that she was recommending, and she was pretty direct about the fact that, yeah, I don't really prescribe that anymore.

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Dilantin was the first anti-seizure medication that came to market, and there have been many medications since that have surpassed it, so that was a little bit frustrating too.

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It's like, well, okay, first you don't even give me a chance to ask you questions, then you give me medication that a lot of people aren't even prescribing anymore.

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What's going on here?

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So just a lot of stuff.

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At this point there's so much confusion and uncertainty.

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She didn't directly diagnose me with epilepsy at that point, but based on everything that I described to her, she said it's very unlikely.

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That's what we're dealing with and let's just continue to monitor it Over the next couple of years.

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I continue to have seizures on a I wouldn't say a frequent basis, but on enough frequency where we had to play with the medication a little bit.

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And then I hit a period of time where for a number of years, I was seizure free oh nice and medication was working.

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Maybe lifestyle had something to do with it.

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But I started doing some research and there's actually a fair amount of people that quote unquote outgrow their epilepsy and I thought, okay, maybe that's me, maybe I'm one of those lucky ones.

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And then, right around the time when my first daughter was born, the seizures came back and the frequency picked up significantly.

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Of course, that was also around the time that I left my consulting career to start my new business and to pivot my career, become an executive coach and all that.

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So there are a lot of things going on that were stressful.

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Seizure frequency was starting to get really challenging some days, four or five seizures a day oh my god, I I can't even fathom that I've had because it's sickness and stuff.

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I've been through it.

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It's a seizure but and it's I wouldn't.

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I wouldn't want my worst enemy to go through that, let alone you or anybody else, and to do four or five a day.

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I can't even imagine.

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Kind of step back real quick.

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When you first started talking to your doctor, did she give you just to give a little bit of education of what exactly epilepsy is?

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yeah, it's multiple seizures is within a period of time, so it's really not any more complicated than that.

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And there are there.

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Here's where it gets complicated.

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There are over 30 different types of seizures.

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So again I mentioned before, many people just assume epilepsy is grand mal seizures.

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You lose consciousness, fall to the ground and shake.

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You lose consciousness, fall to the ground and shake.

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Well, that's just one of many different types of seizures.

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I will tell you so.

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I've had over 500 seizures since I was 30.

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And the vast majority of those are not grand mal or tonic-clonic seizures.

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I've had plenty of those, but the majority of them are what's called focal aware seizures, and this is where it gets a little bit interesting and where most people wow, really, that's actually what happens.

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So focal aware seizures and this is where it gets gets a little bit interesting and where most people wow, really, that's actually what happens.

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So focal aware seizure is where I'm aware of it going on, like I could be having a focal aware seizure right now and have a conversation with you.

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But in my head and I read about this in my book it's like there's a movie playing.

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The first thing that happens is there's this awful smell and I really try hard to describe that smell and it took a really long time to to do that in the book, so I'm not gonna I'm not gonna recreate that for you now.

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Just think about one of the worst smells you've ever smelled.

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That's what it is.

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Creates a lot of nausea and, as I mentioned this movie playing in my head at first I talked about it like it was deja vu because it was a.

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It's a scene from my life that I've experienced before.

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I've been there.

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As I started to research it more, it's really a closer definition is a flashback.

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It's a flashback to a point in time and it would be the same five to 10 movies or scenes from my life that would play out in my head while this is as part of the seizure, and I would get really sweaty on my hairline, on my back, and then the scene would end, the movie would end and then it would be over.

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I never actually timed one.

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A lot of people will ask me well, how long do they last?

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Because I'm not going to stop and time it while it's happening because it's unpleasant, but if I had to guess, no more than a couple minutes tops aftermath is again a lot of.

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So the nausea takes some time to abate, the perspiration takes time to cool off and then it really leaves me with a dullness.

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The analogy I use in the book is it's like trying to write with a dull pencil, where the lines are just not crisp.

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So sometimes you know, if you write with a dull pencil, it's hard to read your own handwriting.

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That's what it feels like Tasks that were simple before become more challenging, so that the best way for me to describe a focal aware seizure.

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Many people just are surprised that, wow, that's actually what happens, because, again, you don't.

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It's completely invisible to the outside world, you wouldn't know it, and there are other types of seizures that that are like that.

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So, anyway, Wow, so you said the tetachronic Tonic, clonic, tonic, clonic, grandma, that's a.

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Basically you're basically falling conscious and you've got muscular crumbling and then, well, convulsing, basically, and then the focal aware is that you have, you've got something totally different than what you've been thinking about going on inside your head, anticubes get sweaty, the rest of you get sweaty, but then that's only a couple of minutes and then you're back.

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Yeah, so all right.

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So just wanted to clarify that.

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So, if anybody out there is feeling something that maybe you should think about going to see a neurologist, is there any other types of surgeries you can, or not surgeries, seizures that you can tell us about?

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Yeah, so there are focal unaware seizures, so similar to what I described in the focal aware seizure, except you wouldn't be able to have a conversation, you're just, your mind is shut off at that point, your body kind of shuts off.

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There are seizures where people will blurt things out that they don't even know they're saying, or they might have some strange muscle movements, but they're otherwise conscious, they just don't remember.

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And there there's again.

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There's so many different ones, but it's just so much more than just what people typically think of as a tonic, chronic or grand mal seizure.

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Oh, that's amazing.

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So so you're starting to get.

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You're starting to get four or five of these a day.

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What was the?

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What was your conversations like with your doctor?

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What was your conversations like with your doctor?

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Yeah, I was pretty frustrated, right.

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Oh, and COVID hit during this time events.

00:19:27.806 --> 00:19:45.869
I think that was probably the biggest aha for me was okay, epilepsy has been around since the biblical times and yet we're still playing the trial and error game, and that, to me, speaks to again.

00:19:45.869 --> 00:19:55.605
I don't want to go down this rabbit hole too far, but if you look at how much funding epilepsy receives versus many other diseases, it's just severely underfunded.

00:19:55.605 --> 00:19:57.913
So unfortunately, that is a big part of it.

00:19:57.994 --> 00:20:11.236
Now, recently, there have been some major breakthroughs from a technology standpoint, a surgical standpoint, medication standpoint, but also, at the same time, the brain is the most complicated organ in the body, so there's still so much we don't know about it.

00:20:11.236 --> 00:20:12.346
But, yeah, it was.

00:20:12.346 --> 00:20:14.211
You know one appointment would be okay.

00:20:14.211 --> 00:20:17.670
Well, let's up your dosage of Lamictal Okay, that didn't work.

00:20:17.670 --> 00:20:19.575
Okay, let's pair it with Depakote?

00:20:19.575 --> 00:20:20.376
Oh, that didn't work.

00:20:20.376 --> 00:20:26.987
Let's, okay, that didn't work.

00:20:26.987 --> 00:20:28.151
Okay, let's pair it with depra coat oh, that didn't work.

00:20:28.151 --> 00:20:28.833
Let's pair it with blah, blah, blah.

00:20:28.833 --> 00:20:29.233
Oh, that didn't work.

00:20:29.233 --> 00:20:29.915
How about you take some vitamin d?

00:20:29.915 --> 00:20:30.336
Oh, that didn't work.

00:20:30.336 --> 00:20:31.601
Right, and just like there's got to be something better.

00:20:31.621 --> 00:20:34.069
Yeah, it's like throwing spaghetti at the wall and see which one of them sticks.

00:20:34.069 --> 00:20:39.429
Yeah, that's horrible that I can't even imagine going through that, just trying something out that didn't work.

00:20:39.429 --> 00:20:45.701
Trying something that didn't work, that's always so frustrating, yeah yeah, then I.

00:20:45.981 --> 00:21:01.241
So I was at an epilepsy foundation walk and was there with a friend who asked me how I was doing and I typically don't like to talk about the bad things that are going on, but we were at the epilepsy walk so I figured I would share with him, and he said he had a good friend who was a neurologist at the epilepsy walk.

00:21:01.241 --> 00:21:09.653
So I figured I would share with him and he said he had a good friend who was a neurologist at the University of Pennsylvania, which happens to be where I'm from, and we got connected.

00:21:09.653 --> 00:21:35.681
Philadelphia is a little bit too far to go from DC for regular appointments, so she put me in touch with a doctorate or a neurologist at Johns Hopkins and that sort of put me on the path to the next phase of all this, which was surgery, which I never thought I would ever consider or would ever even be a possibility, but that ultimately was after many other tests.

00:21:35.681 --> 00:21:36.981
What happened next?

00:21:38.345 --> 00:21:39.067
What were they?

00:21:39.067 --> 00:21:43.924
I hate to say it in such a layman's term, but what were they doing in there?

00:21:45.708 --> 00:21:48.092
yeah, so the first two.

00:21:48.092 --> 00:21:50.395
So the three surgeries, three brain surgeries.

00:21:50.395 --> 00:21:54.929
The first two were part of a procedure called a stereo eeg.

00:21:54.929 --> 00:22:03.768
So a lot of people know an eeg, a regular EEG, is just where they put electrodes on your scalp and then monitor.

00:22:03.768 --> 00:22:09.788
You monitor the electrical activity in your brain and then hopefully you have a seizure, and they can.

00:22:09.788 --> 00:22:16.611
The doctors can pinpoint the origin of those seizures, or the seizure onset zone, as I like to say.

00:22:16.611 --> 00:22:19.746
Unfortunately, when we don't want to have seizures, we have seizures.

00:22:19.746 --> 00:22:21.630
When we want to have seizures, we don't, and so seizures, we have seizures.

00:22:21.630 --> 00:22:40.557
When we want to have seizures, we don't, and so for the for a very long period of time and I had many eegs, I just never had a seizure while hooked up to mars they take the electrodes off, you have a seizure, right, right the stereo eeg was, as my neurologist was explaining to me before we did it, it was pretty invasive.

00:22:40.836 --> 00:22:52.540
So what they do is they drill holes in your head and then they thread the electrodes through the holes and implant them into the different parts of the brain where they think the seizure onset zone might be.

00:22:52.540 --> 00:23:06.137
And the point is that the electrodes being implanted in the brain as opposed to on the scalp it's just going to be that much more accurate pose to on the scalp, which is going to be that much more accurate and be able to pinpoint exactly where their biggest concern and I appreciate this is.

00:23:06.137 --> 00:23:19.191
We're not going to do any kind of resection or anything to your brain surgically without knowing with 100% certainty that this is the zone right, because that could cause many other issues.

00:23:19.191 --> 00:23:24.819
So I was scheduled to be in the hospital for a week for this SCEG.

00:23:24.819 --> 00:23:27.532
One week went by no seizures.

00:23:27.532 --> 00:23:29.650
They said, hey, can you stay for another week?

00:23:29.650 --> 00:23:31.214
Okay.

00:23:32.526 --> 00:23:34.252
Second week went by no seizures.

00:23:34.252 --> 00:23:36.388
Hey, can you stay for a third week?

00:23:36.388 --> 00:23:38.756
Okay.

00:23:38.756 --> 00:23:44.967
By the end of the third week they asked me to stay for a fourth week and that was my breaking point.

00:23:44.967 --> 00:23:52.530
I said listen, I have two little kids at home, I have a job, I have a wife, I just can't, I can't stay here for another week.

00:23:52.530 --> 00:23:57.248
And so my neurologist said to me okay, well, we can induce a seizure through electrical stimulation.

00:23:57.248 --> 00:24:06.967
And the morning um, when he was the morning of the electrical stimulation, he was walking into the room and I had a natural seizure.

00:24:06.967 --> 00:24:26.415
And they were able to confirm their hypothesis, which was the seizures were originating from my non-dominant hippocampus and so we didn't have to do the electrical stimulation, which still to this day scares me a little bit, and I wonder if the stress from thinking about it maybe contributed to the to having the natural seizure.

00:24:26.496 --> 00:24:30.090
But yeah, that was quite, quite the experience I can't even imagine that.

00:24:30.090 --> 00:24:38.357
But so that whole first procedure you had three brain surgeries and the first one, which you said was invasive, was purely diagnostic.

00:24:38.357 --> 00:24:43.256
Yeah, wow, that's just crazy to think about.

00:24:43.256 --> 00:24:50.413
You're drilling a hole in your brain so they can put electrodes in, so they can monitor your, and then that's all frigging, just diagnostic, had nothing to do.

00:24:50.413 --> 00:24:51.497
Oh, wow, that's crazy.

00:24:51.497 --> 00:24:57.507
So they isolated the non-dominant hippocampus and then what were they able to do with that?

00:24:57.507 --> 00:24:58.508
Did they use medication?

00:24:58.508 --> 00:24:59.788
Did they use another surgery?

00:24:59.808 --> 00:25:04.696
Yeah, so throughout all of this they talked about the different options.

00:25:04.696 --> 00:25:11.780
Depending upon what the seizure onset zone was, different medication was a potential option.

00:25:11.780 --> 00:25:24.365
That was one thing that I really appreciated about my neurologist at Hopkins is they said listen, we're not going to change anything about your medication regimen or anything about your treatment plan until we know exactly where your seizures are originating from.

00:25:24.365 --> 00:25:27.589
Anything about your treatment plan until we know exactly where your seizures are originating from?

00:25:27.589 --> 00:25:53.044
It could have been medication, but there were multiple surgeries and other devices that could have been options, but ultimately, with it being my non-dominant hippocampus, I was a candidate for what's called laser ablation surgery, where they drill another hole so total of 15 holes, for those of you counting they insert laser fiber through that hole and then literally burn or ablate that part of the brain so that my non-dominant hippocampus.

00:25:53.044 --> 00:25:58.344
They do all this through robotics and following mri images.

00:25:58.344 --> 00:25:59.527
It's really high tech.

00:25:59.587 --> 00:26:03.962
Now the concern is that if it gets too hot, that it could ab ablate.

00:26:03.962 --> 00:26:12.443
If the laser gets too hot, it could ablate other regions surrounding that, which could result in some other pretty scary side effects.

00:26:12.443 --> 00:26:20.095
I'll never forget the legal paperwork I had to sign before all of these procedures, but particularly before the laser lesion surgery.

00:26:20.095 --> 00:26:27.855
Yeah, the risks that were associated with it stroke, bleeding, death, going blind there were a lot of possibilities.

00:26:27.855 --> 00:26:32.118
Thankfully none of that happened, but yeah, quite the interesting experience.

00:26:32.118 --> 00:26:34.638
My neurosurgeon was phenomenal.

00:26:34.638 --> 00:26:41.000
He walked me through the procedure before we did it and, as anybody who's seen Jerry McGuire, he had me at hello.

00:26:44.030 --> 00:26:49.855
So when you were signing this paperwork, did you ever, did it cross your mind ever, to think, heck, I'll just live with the seizures?

00:26:51.718 --> 00:27:14.560
maybe for a brief moment, but the thing that I kept coming back to was I want to be able to live my best life for me, for my family, for my kids, for anyone in my life, and having seizures so regularly was getting in the way of that.

00:27:14.560 --> 00:27:20.682
And one thing I didn't mention the catalyst for actually going ahead with the laser ablation surgery, because it was recommended.

00:27:20.682 --> 00:27:21.392
But it wasn't like.

00:27:21.392 --> 00:27:26.103
You have to do this or else I could have lived with uncontrolled seizures.

00:27:26.970 --> 00:27:49.890
My older daughter, who at the time was about three years old I was taking a nap and she walked into my room and saw me having a tonic-clonic seizure and three years old or at any age, really it's frightening to see anyone just shaking uncontrollably, making noises with my mouth that were really unsettling.

00:27:50.029 --> 00:27:57.711
That, as my wife described it later, you couldn't tell if I was just parched or if I was struggling to breathe.

00:27:57.711 --> 00:28:06.682
It was just a really frightening sight for her and she just kept saying to my wife tell daddy to stop, tell daddy to stop, tell daddy to stop, until she finally had to take her out of the room.

00:28:06.682 --> 00:28:16.301
My wife had to take her out of the room because that's just, it's too scary for a three-year-old to watch, and she talked about it for a little bit after, but thankfully our three-year-old brain let her move on.

00:28:16.301 --> 00:28:28.258
But my thought process was it's one thing for me to experience seizures and have them impact me, but if they're going to impact my family, particularly my kids, I really have to do something about it.

00:28:28.258 --> 00:28:34.221
And that's what pulled me over the edge about agreeing to sign the paperwork of yeah, you could die from this procedure.

00:28:36.109 --> 00:28:36.751
I can see that.

00:28:36.751 --> 00:28:42.997
Obviously, when you have a family, it's things become bigger than yourself, and obviously that's what you were thinking about at the time.

00:28:42.997 --> 00:28:45.321
So how did that turn out?

00:28:47.893 --> 00:28:49.438
Yeah, it went as planned.

00:28:49.438 --> 00:28:52.758
As they say, the recovery time was actually fairly short.

00:28:52.758 --> 00:28:55.692
It was a couple of days in the hospital, soon after.

00:28:55.692 --> 00:29:02.522
For the next number of weeks, months, really, actually many months.

00:29:02.522 --> 00:29:04.184
I was not myself.

00:29:04.184 --> 00:29:07.752
I was extremely exhausted, just very low energy.

00:29:07.752 --> 00:29:10.781
I would randomly fall asleep in the middle of the day.

00:29:10.781 --> 00:29:12.771
It just wasn't me.

00:29:12.771 --> 00:29:22.901
And my wife, who is very attuned to me and my personality, just one day came to me and she said this isn't you, we need to do something about this.

00:29:23.531 --> 00:29:25.518
I went back to Hopkinskins.

00:29:25.518 --> 00:29:29.273
They did some more tests and many more test procedures.

00:29:29.273 --> 00:29:38.256
We did t scans, mris, you name it, and everything seemed normal, which is good and bad.

00:29:38.256 --> 00:29:45.519
And then my wife, as this continued after I got back from hopkins, said to me I think you're depressed.

00:29:45.519 --> 00:29:52.160
You haven't smiled in a week and that sort of knocked me over.

00:29:52.160 --> 00:30:01.723
I've definitely dealt with a lot of negative stuff in my life, like everyone else does, but I'd never been depressed before.

00:30:01.723 --> 00:30:09.230
I didn't really know what that meant or felt like and I had no other explanation.

00:30:09.230 --> 00:30:18.184
So I went to see a psychiatrist and he ran me through the gamut of depression questions and passed with flying colors.

00:30:18.184 --> 00:30:22.780
So medication for that actually really seemed to help.

00:30:22.780 --> 00:30:24.906
Interesting yeah.

00:30:25.828 --> 00:30:26.009
Yeah, yeah.

00:30:26.009 --> 00:30:51.163
It's so interesting because you just went through all of these, went through months and months of where you were doing four to five seizures a day, finally get to a point that you would think the average person would think that, oh my God, he's not we're not going to say chored, because obviously it's too complex for that but he's gotten to this point where hopefully he's not going to have another seizure or they're going to be tremendously diminished.

00:30:51.163 --> 00:30:52.835
You should be happy about that.

00:30:52.835 --> 00:30:57.539
No more scaring your kids, no more worrying about where you can be at work or anything like that.

00:30:57.539 --> 00:30:59.657
You would think that you would be overjoyed.

00:31:01.112 --> 00:31:02.477
I started doing research on it.

00:31:02.477 --> 00:31:19.231
I started doing research on it.

00:31:19.231 --> 00:31:24.480
The percentage of people with epilepsy and depression is significant as compared to the normal population.

00:31:24.480 --> 00:31:34.994
He said to me you're just a little bit removed from three, four plus hour brain surgeries with a lot of anesthesia and various other medication going through your body.

00:31:34.994 --> 00:31:38.205
This isn't all that surprising.

00:31:38.205 --> 00:31:45.983
I've had a couple of patients recently that have been through the same thing you have and it's taken them close to a year to feel back to normal.

00:31:45.983 --> 00:31:50.118
And it's a sort of joke, but also somewhat serious about it.

00:31:50.118 --> 00:31:50.901
I'll never forget.

00:31:50.921 --> 00:31:52.813
He told me the recovery time is about three weeks.

00:31:52.813 --> 00:32:00.857
So in my head I thought, okay, I'm not going to work for three weeks as much as I really want to, but three weeks I'm good.

00:32:00.857 --> 00:32:05.086
When three weeks becomes a year, that's a big difference, huge.

00:32:05.086 --> 00:32:06.569
And it really did.

00:32:06.569 --> 00:32:13.824
It took every bit of a year, if not even a little bit more, before I really felt back to myself.

00:32:13.824 --> 00:32:20.116
So a lot of people say to me well, if you knew that it was going to be a full year, would you have gone through with all this?

00:32:20.116 --> 00:32:23.310
I don't know, maybe it's better you didn't tell me.

00:32:23.310 --> 00:32:24.253
I'm not sure I would have.

00:32:24.253 --> 00:32:27.796
I would be quite honest did you any?

00:32:27.955 --> 00:32:30.221
did you have any seizures during that year?

00:32:32.232 --> 00:32:46.060
so, as I'm waking up in a post post-op after the, the laser glazion surgery, the nurses are putting me onto a gurney and I start to have a focal aware seizure.

00:32:46.060 --> 00:32:56.464
So the same the nausea, the movie plan, the scene, the perspiration, and then over the next hour or so I had 10 of these.

00:32:56.464 --> 00:32:58.473
They just kept the term.

00:32:58.473 --> 00:33:05.803
The medical term is clustering, so they was just a cluster of 10, 10 or so of these focal wear seizures.

00:33:05.803 --> 00:33:08.529
And talk about depression or despondent.

00:33:08.529 --> 00:33:13.386
I just had this four plus hour procedure where I signed away my life.

00:33:13.386 --> 00:33:20.019
That was supposed to end all of my seizures, and as soon as I wake up, I'm having them over and over again.

00:33:20.019 --> 00:33:22.423
What, yeah?

00:33:22.423 --> 00:33:24.334
And so the?

00:33:24.334 --> 00:33:29.755
When the neurologist finally came in, they explained to me that this isn't unexpected.

00:33:29.755 --> 00:33:38.224
This, I don't have to say, this is normal, but this happens because we're inside your brain, poking and prodding and stuff just happens.

00:33:38.224 --> 00:33:51.759
Now, if this, if you continue to experience these seizures over time, certainly that's a problem, but this is it, it's okay and thankfully it was the only other episode that I had and it'll be.

00:33:51.859 --> 00:33:55.616
It's about two and a half years since that procedure, since that third surgery.

00:33:55.616 --> 00:34:10.445
We were going to visit family friends for Thanksgiving and I didn't pick up my medication before we left, and not taking my medication caused me to have a couple of focal wire seizures.

00:34:10.445 --> 00:34:13.820
So it's just another reminder of the importance of the medication.

00:34:13.820 --> 00:34:15.375
But I'll be honest with you.

00:34:15.375 --> 00:34:25.902
You alluded to this, but there was part of me where I thought about they just ablated my seizure onset zone, about they just ablated my seizure onset zone.

00:34:25.902 --> 00:34:39.070
My logical mind says, okay, why would I need medication, wouldn't the seizures just stop because of the surgery?

00:34:39.070 --> 00:34:43.673
And again, the brain is just much more complicated than the simplicity that went through my head there.

00:34:43.673 --> 00:34:45.978
But I certainly proved it to myself that that certainly wasn't the case.

00:34:45.978 --> 00:34:50.385
The hope is, as my neurologist describes it, over time we can titrate down a little bit.

00:34:50.385 --> 00:34:59.201
I'm on two medications, but the likelihood and maybe go to just one, but the likelihood of ever being off medication entirely is just very low.

00:35:02.030 --> 00:35:03.012
So we missed one.

00:35:03.012 --> 00:35:04.456
So you had a diagnostic.

00:35:04.456 --> 00:35:08.152
Then you had the non-dominant hippocampus laser ablation.

00:35:08.152 --> 00:35:11.056
What was the third surgery and why so?

00:35:12.699 --> 00:35:15.083
the seeg is really two surgeries.

00:35:15.083 --> 00:35:21.873
So it's oh, you plant, it's drilling the holes, implanting the electrodes and then, when it's done, taking electrodes out.

00:35:21.873 --> 00:35:23.800
So is it surgery?

00:35:23.800 --> 00:35:26.612
Are they actually doing something, taking something out of my brain?

00:35:26.612 --> 00:35:32.835
No, but I'm still if there's still four hour plus procedures under general anesthesia and they're going in my brain.

00:35:32.835 --> 00:35:35.684
So, yeah, that sometimes gets confusing, but that will.

00:35:35.704 --> 00:35:38.275
they are taking something out.

00:35:38.275 --> 00:35:40.822
It just well, they put something in to start with, that's right.

00:35:40.822 --> 00:35:46.798
They just got to go back and take it back out yet but but wow, but that's crazy, so so, ok.

00:35:46.798 --> 00:35:50.965
So so now it's been two and a half years since you've had a, you've had a seizure.

00:35:52.210 --> 00:35:54.735
Two and a half years since the third surgery.

00:35:54.735 --> 00:35:58.083
It's about a year since the last seizure.

00:35:58.750 --> 00:36:02.731
OK, good, and the depression, you know.

00:36:03.092 --> 00:36:08.532
I'm very happy depression.

00:36:08.552 --> 00:36:09.034
Yeah, no, I I'm very happy.

00:36:09.034 --> 00:36:09.896
No, excellent, that's what I like to hear.

00:36:09.896 --> 00:36:11.663
All right, so he was right about the depression.

00:36:11.663 --> 00:36:12.987
After about a year that sounded it came back.

00:36:12.987 --> 00:36:13.449
So it on one side.

00:36:13.449 --> 00:36:17.878
To me it didn't really make a lot of sense, but on the other side maybe it does.

00:36:17.878 --> 00:36:20.990
So the hippocampus, I'm not mistaken.

00:36:20.990 --> 00:36:28.003
The non-dominant part is memory and the dominant part is images and visual.

00:36:28.003 --> 00:36:29.891
Yeah, I think that's right.

00:36:29.891 --> 00:36:31.615
So I didn't get that.

00:36:31.615 --> 00:36:32.518
It's so at that part.

00:36:32.518 --> 00:36:33.822
I didn't get that because I was waiting for.

00:36:33.822 --> 00:36:35.577
I was waiting for the hippocampus.

00:36:35.597 --> 00:36:38.590
I was thinking about it and I think I'm making the pituitary gland.

00:36:38.590 --> 00:36:40.036
I was thinking about that.

00:36:40.036 --> 00:36:45.898
Maybe it was something that caused a cortisol level, right, and that was why we got depressed.

00:36:45.898 --> 00:36:56.579
I was thinking, oh, you were flooded with cortisol throughout the thing and then, of course, your cortisol falls to nothing and then, of course, you're definitely gonna be depressed, but it really doesn't have anything to do with that.

00:36:56.579 --> 00:37:01.534
So that's unless it's, it could be part of that part.

00:37:01.534 --> 00:37:06.014
I'm not sure Did they ever come up with an idea of how that, just why that happens?

00:37:06.434 --> 00:37:11.001
No, and the medication was effective, is effective.

00:37:11.001 --> 00:37:12.483

Epilepsy and Empowerment: Jonathan's Tale

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