[00:00:00] Pete Waggoner: This is Neurology Now, the podcast that explores the fascinating and complex world of neurology. Join us as we explore the human brain and beyond with expert guests who share their knowledge and insights. 

[00:00:11] Pete Waggoner, Host: we’re here with Julie Serlin and looking forward to discussing more with you at the Minneapolis Clinic of Neurology. And. Julie, first of all, hello and thanks for joining us.

[00:00:20] Julie, MCN Patient: Absolutely. Thank you for having me. 

[00:00:21] Pete Waggoner, Host: I think you have a great story to share and I’m looking forward to hearing it

[00:00:24] Pete Waggoner, Host: so what first brought you here to the Minneapolis Clinic of Neurology? 

[00:00:29] Julie, MCN Patient: I moved to Minneapolis in 2002. And when I moved, I was looking for a new clinic. I had been diagnosed back in 2001 and I was living in Milwaukee. And so when I moved up here, I needed to find a new neurologist and so I started doing a little research.

[00:00:48] Julie, MCN Patient: And this is one of the first places I landed on. 

[00:00:51] Pete Waggoner, Host: And what was it about this that stood out among the others that you researched, that you said, you know what this feels like? A close fit to what you had. 

[00:00:59] Julie, MCN Patient: [00:01:00] Yeah. And I wanted what I didn’t have before. 

[00:01:02] Julie, MCN Patient: So my previous neurologist was very direct, very cold, very short do this and then come back.

[00:01:11] Julie, MCN Patient: And here I felt like it was a bit more welcoming. There was that time spent so that I could tell what was going on. And, from the beginning all the way to the present. So I never felt like there was a rush regardless how behind anyone was. And when someone wants to take the time to listen, you wanna take the time to go.

[00:01:32] Pete Waggoner, Host: And in doing so through the process, did you find that was simple things, even from first contact to then maybe checking it out? Was it all along the way where you’re checking the boxes? Did you find that, 

[00:01:45] Julie, MCN Patient: Yes and no. So I initially saw one physician and I switched when I ended up coming here because I was looking for just a different fit.

[00:01:55] Julie, MCN Patient: I liked the clinic and I knew it had a good reputation, [00:02:00] but I didn’t find somebody initially who I thought was gonna be my long-term neurologist. Because this isn’t going away. And so I knew I needed to find a place and a human that I would wanna be committed to because this person I end up seeing more than I do any other physician.

[00:02:18] Julie, MCN Patient: And so it wasn’t as easy. But by the time, the second physician I landed on, I committed to at that time, 

[00:02:25] Pete Waggoner, Host: how long had you been seeing your. Original neurologist in Milwaukee? 

[00:02:30] Julie, MCN Patient: A year and a half. 

[00:02:31] Pete Waggoner, Host: Oh, so this was pretty still new? 

[00:02:33] Julie, MCN Patient: Yeah. Into the whole, yeah, so I was relatively newly diagnosed.

[00:02:37] Julie, MCN Patient: Today I’m like an old hat, but back then I was relatively new and I knew what I didn’t want and so I wanted to make sure I didn’t land on that a second time, so I was being a little bit more discerning. 

[00:02:48] Pete Waggoner, Host: So before we go too deeper, how are you doing today? 

[00:02:51] Julie, MCN Patient: Ah, I’m still walking. 

[00:02:52] Pete Waggoner, Host: You’re doing great.

[00:02:53] Julie, MCN Patient: So that was my goal. When I was diagnosed, they said I’d be in a wheelchair in 10 years. So I guess I showed them [00:03:00] Wow, 

[00:03:00] Pete Waggoner, Host: that’s what we’re talking almost 23, 25 years, right? Yeah. Yeah. That’s amazing. That’s really good. 

[00:03:06] Julie, MCN Patient: Yeah. 

[00:03:06] Pete Waggoner, Host: Has your quality of life improved or maintained since you first came here?

[00:03:11] Julie, MCN Patient: Yeah it’s been a couple decades, so I. Expect to get better. I’m looking for stable, right? Like my bar is set relatively low. That’s super low. But I’ve been pretty stable. Recently I’ve had a a few detours I guess I could say, but it has nothing to do with the clinic.

[00:03:32] Julie, MCN Patient: It’s just my body’s you’re not doing things. Maybe you need to slow down a little bit. But in general, I think that I can’t consider myself anything but lucky,

[00:03:42] Pete Waggoner, Host: it’s amazing to be able to hear that. Yeah. That’s yeah.

[00:03:45] Pete Waggoner, Host: You rendered me speechless there. That’s super cool. Sweet, nice work. That was 

[00:03:50] Julie, MCN Patient: my plan. 

[00:03:50] Pete Waggoner, Host: Yeah. You did a good job. What would you say I’m sure you’ve probably referred people, have you, what would you say to a new potential patient here? What they could [00:04:00] expect? 

[00:04:00] Julie, MCN Patient: The doctors know their stuff. I have the second physician I’m seeing now just because my other one retired and they have different approaches, but.

[00:04:10] Julie, MCN Patient: I still continue because there’s such a huge value to it. But I would say take the time. ’cause they take the time to understand you. And so that’s what I think is really important. They listen and they give feedback because, I went to school to do what I did. I trust that they’re the experts.

[00:04:27] Julie, MCN Patient: So I do wanna hear the recommendations. I do wanna follow it unless they’re like, jump off a cliff, but other than that, like I want someone who has conviction. Because that’s important to me, and especially when they know what they’re doing.

[00:04:40] Pete Waggoner, Host: You said they listen, which I thought was interesting. And if you were to say, you do need to communicate back too, what kind of questions would you. Say, these are the things you really need to ask and look for. Yeah. When you first get engaged in this process, 

[00:04:58] Julie, MCN Patient: How often [00:05:00] do I need to see you?

[00:05:01] Julie, MCN Patient: Why are you doing what you’re doing? Why are you recommending what you’re recommending? How do I compare to somebody else at this stage? What can I expect going forward? And if the answer is, I don’t know, that’s okay too. But you don’t know unless you ask. And so for me okay, if I’m starting a new medication, what do you know about the side effects?

[00:05:24] Julie, MCN Patient: How long will it take me to get used to it? What are my options if that doesn’t work? And when should I call if it doesn’t work, and when should I stop calling? Yeah. Don’t be a beast about it, but you are your best advocate. They’re your physician, but you owe yourself the time and effort to ask all the questions because otherwise, like no one else is gonna do it on your behalf other than you.

[00:05:47] Julie, MCN Patient: They’re here for you, but, take care of yourself. 

[00:05:49] Pete Waggoner, Host: I think it’s really important what you said, all of it, and the word you used was advocate. ’cause you do need to do that. And I think sometimes a patient or people can get into kind of the realm where they’re. [00:06:00] Afraid to do that. And you’re very unafraid here in your explanation. Yeah. Which I think is really good. And it portrays well because everybody needs to take that. And I think the physicians appreciate that too. 

[00:06:12] Julie, MCN Patient: Yeah. Again, like former physician was like, you’re the boss of you. And I was like, yeah, you’re the boss of me too.

[00:06:20] Julie, MCN Patient: At the same point in time, I am the boss of me. But I want your advice. 

[00:06:24] Pete Waggoner, Host: You know what you feel 

[00:06:25] Julie, MCN Patient: right. 

[00:06:26] Pete Waggoner, Host: You know what the the potential impacts are of whatever the care is. And most of the time Yeah, but only you can really know what that is. And if they don’t know, they don’t know.

[00:06:35] Pete Waggoner, Host: So the old you don’t know what you don’t know. That line usually works well. How about this were there any surprises. That maybe jumped out at you over the process of your journey here where you said, ah, that was pretty cool. Maybe anything like that? 

[00:06:50] Julie, MCN Patient: I was the first patient to take the drug I’m on now.

[00:06:54] Julie, MCN Patient: I’m red dosing, but I love that there’s always an opportunity to try something new because I’m the first one to raise [00:07:00] my hand. 

[00:07:00] Pete Waggoner, Host: When was that? 

[00:07:01] Julie, MCN Patient: This was 2019. 

[00:07:04] Pete Waggoner, Host: Oh, six years. 

[00:07:05] Julie, MCN Patient: Yeah. So that was, I was the first patient on a drug that I started in Minnesota. In Minnesota. ‘Cause she was like, you could try this and, ’cause my previous drug we broke up.

[00:07:15] Julie, MCN Patient: Yeah. But it was a good run. Yeah. For a little bit. Maybe not yet. Not that great. But this one I was like why not? And I love the. I’m getting the ask if I wanna try it, and as you probably can tell, I’m the least risk averse person. And so if there’s something that I know that there’s an opportunity for, at least for me to be stable I know we’re looking for a cure.

[00:07:37] Julie, MCN Patient: I don’t expect to be cured. MS. Is ms. But at the same point in time, like I want to stay as stable as I can, and if that’s what I can do hallelujah. So yeah, I loved that there’s an opportunity to try new things to circle back to your question and that they’re offering it.

[00:07:54] Pete Waggoner, Host: How about recommendations? If you’ve made one to anyone, what does that sound [00:08:00] like? 

[00:08:00] Julie, MCN Patient: Please understand, like you’re going to get the answers that you need.

[00:08:05] Julie, MCN Patient: They may not be the ones that you want to hear. They may not be the ones you want to hear, but that’s better than not getting answers at all. ‘Cause they’re gonna take the time. They’re gonna listen. They’re gonna give you, a direction where you need to head. ’cause sometimes the hardest thing is not knowing where to go.

[00:08:21] Julie, MCN Patient: And they may not tell you’re gonna end up here because sometimes you don’t know, but you’re going to be given the path to at least address what’s going on. And I think sometimes it’s just so hard when you’re like, I don’t know who to ask. I don’t know where to go. There’s a million choices, why pick what, and I’ve been at this clinic since I moved to Minnesota and that’s, 23 years of my disease life, yeah. So it must, it must be working. 

[00:08:49] Pete Waggoner, Host: It, it clearly is. Look at that. So and the beautiful thing is with their be Seen Sooner campaign that’s now is with the way things have gone with what they’re looking to do is shrink that [00:09:00] from six to two months.

[00:09:01] Pete Waggoner, Host: Yeah. And so that’s incredible. But I think we just so live in a, if you want it today and now just how we are. But it’s also something that I think you just don’t wanna sit around and wait, no, don’t ever wait. You wanna know and but you’re saying if it’s two months or four whatever to six, whatever, take the time, it’s worth it.

[00:09:20] Julie, MCN Patient: Okay. And if there’s an emergency, don’t get me wrong, like I had an emergency and I called the, a doctor on call when I was a crazy thing that happened, but, and then I was like, no, it’s not a big deal. And then it ended up being my physician who was on call and called me back and she was like, okay, you’re definitely, it must be an issue if you’re calling.

[00:09:43] Julie, MCN Patient: What’s going on? Yeah. And that was within, nanoseconds and it was on a weekend. So don’t get me wrong, if there’s an emergency. I can be seen I get a phone call and probably because I call when it’s important. But it, they’ll squeeze me in [00:10:00] to whomever if I need to get in.

[00:10:02] Julie, MCN Patient: But if this is like an extended, a check in or whatever I don’t remember reading. 

[00:10:08] Pete Waggoner, Host: Got it. And 

[00:10:09] Julie, MCN Patient: I’m an Nancy person by nature 

[00:10:10] Pete Waggoner, Host: so it 

[00:10:11] Julie, MCN Patient: tells you a lot. I understand. 

[00:10:13] Pete Waggoner, Host: Are you aware of, or. Do you know if the process, how it worked from your original physician to here, how that exchange of information worked?

[00:10:24] Pete Waggoner, Host: Because I don’t think there was any of the online stuff. Oh, no. So how did that process go and how do you think the people here managed that? Or did you need to really basically start from scratch? 

[00:10:36] Julie, MCN Patient: So I used to work in like the clinical environment. So I probably had more familiarity than a lot of folks do.

[00:10:43] Julie, MCN Patient: And I didn’t need a referral at that time. Sometimes that’s hard ’cause you sometimes have to go to a regular physician and then get a referral to a specialist and stuff like that. I didn’t have to do that at that time. And I knew where I wanted to go. Like I researched it before I got [00:11:00] here and I was like, there’s two places I wanna go.

[00:11:02] Julie, MCN Patient: This is one. And I was like no. Too shiny. I wanna come here way more down to earth. And all the other things we discussed. But I didn’t have to deal with a long referral process. It can be challenging though, to navigate for some people. But I think, from the person who answers the phone, who I love to, all the way to the nurse, to the physician, like everyone’s really helpful.

[00:11:27] Julie, MCN Patient: And I’ve never, there’s never been a time that I’ve been like. Oh man, I’m gonna think about switching. I ne it’s never come to mind. 

[00:11:34] Pete Waggoner, Host: Wow. 

[00:11:35] Julie, MCN Patient: Ever. 

[00:11:35] Pete Waggoner, Host: That’s powerful. 

[00:11:36] Julie, MCN Patient: 20, couple decades I think about 

[00:11:38] Pete Waggoner, Host: that. 

[00:11:38] Julie, MCN Patient: Yeah. When 

[00:11:38] Pete Waggoner, Host: people do that, I probably on every front. 

[00:11:42] Julie, MCN Patient: I have the same like four cars during that time.

[00:11:44] Julie, MCN Patient: So think about it that way. Think about 

[00:11:46] Pete Waggoner, Host: that. That’s crazy, right? That, that’s crazy. Good. Super cool. The final question for you if you were to summarize. This whole experience here and the reason why you were willing to do [00:12:00] this interview? Sure. What really drove you to say, you know what, you guys are great.

[00:12:05] Pete Waggoner, Host: I wanna take care of you. What really drove that for you? 

[00:12:09] Julie, MCN Patient: I’m grateful.

[00:12:13] Pete Waggoner, Host: That’s beautiful. 

[00:12:14] Julie, MCN Patient: I’m still walking, so 

[00:12:16] Pete Waggoner, Host: I can’t ask for anything better, man. Honestly, when I. When I saw you come to the door, would never know. It’s because you don’t 

[00:12:23] Julie, MCN Patient: know how I feel on the inside. 

[00:12:25] Pete Waggoner, Host: Yeah. 

[00:12:25] Julie, MCN Patient: But it doesn’t mean that, tomorrow I might not be able to walk, but like every day is a gift.

[00:12:32] Pete Waggoner, Host: Thank you for sharing that. 

[00:12:33] Julie, MCN Patient: Sure. 

[00:12:34] Pete Waggoner, Host: Julie, you’re the best. Appreciate it. 

[00:12:36] Julie, MCN Patient: Thank you. Thank you.

[00:12:37] Pete Waggoner, Host: Thank you for joining us here on this podcast, Soma, everybody.