Taking Control: Understanding and Managing MS Progression

Taking Control: Understanding and Managing MS Progression

Episode 176 – Podcast Transcript

[(00:00)] Stephanie Buxhoeveden: Welcome to the Can Do MS podcast. I’m your host Stephanie Buxhoeveden. I live with MS and I’m also a clinician and MS researcher. Today we’re excited to welcome our guest, Julie Stamm, who’s living with MS. Julie is an MS advocate, and here to share a bit about her MS progression and how she takes back control. Hi Julie. Thank you so much for being here.

[(00:43)] Julie Stamm: Oh, I’m so excited. Thank you for having me.

[(00:46)] Stephanie: Nice. So today we’re talking about kind of a new catchphrase in MS, which is smoldering MS. And first I wanted to start off by saying that smoldering MS is this like slow insidious disease process that goes on beneath the surface. So even if you’re not having relapses or your MRI isn’t showing new brain lesions, there’s still chronic inflammation and this neurodegeneration that we don’t always do a good job of picking up on an MRI because they’re just technological limitations. But these things can lead to this gradual worsening of our symptoms, like fatigue, cognitive decline, how far we can walk. Um, and this form of MS is just a little bit different in how we approach it and how we treat it. And I know that as a patient, I have noticed that I’m getting worse even though my MRIs are stable. Um, but Julie, please tell me what does this smoldering MS concept mean to you?

[(01:45)] Julie: I can, I think, uh, how I think of it is, is there something I could do last year that I can’t do this year? Um, especially having like a young son, I, you know, I know the limitations at the park are different. You know, I used to be able to play on that play structure and I used to be able to walk up those stairs and even down to doing laundry, I used to, you know, be able to walk up holding the basket. Now I’m scooching down. So I think just paying attention to the gradual changes. ’cause sometimes they’re, they’re small, you know, crossing your legs and now you need to use your arms to help pick it up to cross over. They’re just, they’re there and they’re felt.

[(02:20)] Stephanie: Yeah, and I think that’s a really good point. ’cause it’s different than a relapse where one day you’re doing something and then all of a sudden, right, you have foot drop or you have pain, or you have new weakness, or your vision goes blurry. And as you were saying, it really takes like conscious looking back over the last year or two and thinking, hmm, this is harder than it used to be. And sometimes my family’s a little bit better at picking up those subtle changes than I am.

[(02:50)] Julie: Completely. Definitely. They definitely… You know, my husband notices changes in just in terms of like what we can do and how long we can last when we’re going out. Um, you know, things that didn’t seem as daunting. Like going to a concert now feels like almost impossible and it, it barely seems worth the doing anymore. You know, and I, I try and I push and I do things, you know, I just went to an amusement park and it was a real challenge. And I don’t, I don’t think five years ago it would’ve weighed as heavily as it did.

[(03:22)] Stephanie: Yes. Yeah. Things like an amusement park. Definitely. You don’t do that every day.

[(03:25)] Julie: Oh my goodness. Yeah. No, never wanna do it again.

[(03:30)] Stephanie: Something, something that used to be a very fun and carefree experience is now very challenging. And so it’s, it’s a little easier to pick up on that. But, um, but obviously living with a condition that does in some ways progress slowly and silently brings on these very unique challenges. So can you tell me how do you approach that uncertainty?

[(03:52)] Julie: Um, I, it’s really, I try to be optimistic, but I’m also, I’m saddened by it. And I, I would, I would be doing a disservice to always be that positive person because I don’t think it’s a reality. I think it’s incredibly daunting and wearing emotionally. And I think trying to keep all of that inside is very hard. Um, but you, you know, uh, the longer we can keep it invisible, the harder we try, um, but it, it is definitely getting harder to keep it invisible. Um, so I think my goal is to try and embrace it with grace. Um, but that’s not always easy to do.

[(04:32)] Stephanie: Yeah, a hundred percent. And for me, part of living with the uncertainty of these symptoms that are gradually getting worse, or not knowing if it’s gonna be a good day or a bad day, but I tend to like over plan, right? So I can’t go anywhere without bringing equipment, medication, mapping where the bathrooms are…

[(04:56)] Julie: Everything. Yeah. We’re constantly evaluating how many steps to the car, you know, how many bathrooms are there, are they easy, easy to get into, or is it gonna be locked, you know? I don’t, the internal monologue that we carry, I, I, I really wish sometimes people could just take a peek in and see how hard it is because you and I smile through it and we definitely are the face of advocacy, I think, um, but it is hard. And I, I think sometimes we try so hard to be positive and, you know, supportive, but we also have to let people in on it is really hard and we understand.

[(05:31)] Stephanie: Yeah.  And it can be confusing for others, right? Because maybe last year we could go to the amusement park and be the chaperone on the field trip, and this year we can’t. And it’s hard to explain or verbalize like why that is or what’s happening, especially when you’re going to your neurology appointment and everything’s quote unquote stable and the same. And that used to be so frustrating to me.

[(05:55)] Julie: And, and like we used to sell, I used to be like, oh, good, no new lesions. But it doesn’t, to me, the image doesn’t matter. The, the term of which you, you know, whether it’s relapsing, progressive, whatever, smoldering, I don’t care. I just want treatment. And so I, at some point, like I still have my MRIs every six months and all that, but it doesn’t matter. What matters is how I feel. And I tried to explain to my husband like what it, you know, when you first get your license, you look at the picture and you’re like, oh, that’s not great. But then like five years later you get another one and you’re like, oh, I wish I could do that. I wish I could have that picture again. That’s what MS is like, you just, you know, you think it’s so bad and what you have, and then you go another year and then you look back, you’re like, I wanna go back to that.

Like, I wish I could go back to my 27-year-old self and be like, this is easy compared to what you’re gonna have. Um, but, and you know, I, I do worry about, you know, I’m 45 now, I do worry about what 60 five’s gonna look like. Um, you know, and I, I worry about what 50 is gonna look like and I, I, you know, I do think that there will be better treatment options we’re, there’s so many great ones now, um, compared to how it was when we first started. Um, but I do believe there will be a cure in our lifetime, but I hope it comes in enough that it can slow it down.

[(07:14)] Stephanie: Yeah. Yes. And I think even since you and I were diagnosed, you know, over a decade ago, we’ve learned so much more about this smoldering or progressive part of MS. And I think it’s important to know everybody with MS has both this neurodegenerative pathway and this, uh, relapsing inflammatory pathway. Everybody’s got a little bit of both for the most part. Um, and we’re really good at seeing new lesions and seeing active acute inflammation. That’s really the majority of what MRIs pick up. But they don’t do a good job of seeing like atrophy or shrinking of the central nervous system tissues. And what we’re learning now too is that the lesions that are already there, MS likes to attack the same place over and over. So even though it looks like an old “stable lesion” in, in reality, it’s getting a little bit bigger.

And those rims around those lesions have active, uh, active inflammation still. So this, this is why we’re turning it like smoldering MS. So even the old areas which are appearing like they’re just scarred over tissue, we’re actually seeing enhancement around the ring of that lesion. And that’s why even though it “looks stable”, you are actually experiencing progression. So that’s one thought behind why we are seeing this progression independent of relapse, which we call Pira [?)] . Uh, the other thing too is there are parts of the brain traditional MRIs can’t pick up on, right? So myelin is white matter. Um, but we can’t see the cortex or the actual, like outlying edge of the brain. And we’re finding that people with MS have lesions. There, there are some research level scans that can see the cortex. And we think that that activity that’s completely missed by traditional MRIs drives a lot of this progression independent of relapse or the smoldering MS. So to me it feels, you know, I didn’t need research to tell me that I progressed independent of relapses, but it’s also very validating that…

[(09:28)] Julie: Oh, for sure. Yeah. I think that’s great that they’re, and I do think when they, they figure this out, that they’re working to figure out how it’s actually working, um, and what’s, what the actual process is. ’cause even for me, like most of my lesions are on my spine and it’s, it’s heavily impacted. So it’s hard to see if there’s anything new because there’s so much activity that’s already deteriorated. Um, so I, I really think listening to our bodies, and I think the, the doctors need to listen to us as patients, not only based on the image, um, but hopefully they come up with better imaging options for us that can give a clearer picture, you know, if you want more spinal fluid, take more spinal fluid, I don’t care. I just wanna like, you know, I want a crystal ball. But, you know, I also, I don’t know if I wanna see the picture.

[(10:14)] Stephanie: Yeah. I mean, and I think it’s important, like, because we understand the inflammation and that part of MS, all of our treatments for the most part address it. And I think one of the major reasons why none of our current medications significantly impact degeneration is because, like you said, we don’t understand it yet. But once we find biomarkers of it, once we understand the drivers, there will be more treatments that better address that side of MS. And that makes me very hopeful as a researcher, as a patient. Um, and I think it’s a really exciting time. But I wanna go back to something you just mentioned about how you talk to your doctors about this, right? So it’s hard, it’s so hard to pinpoint. It happens so gradually. Um, what has your experience been like in those conversations in the doctor’s office.

[(11:05)] Julie: It’s hard. So I have to admit, I never believed in physical therapy. Um, it just wasn’t for me. And I, I finally found a physical therapist that I do believe has like, impacted my abilities. Has significantly helped with things that I thought were completely gone. So I do believe, um, that there are ways to improve, even though you are worsening. Um, that was something that I really didn’t believe in the past. Um, I’m like 16 weeks in and there are things that I didn’t think I’d ever be able to do again that she’s helping me do. So I do, I, I think there is hope in that. Um, and I guess when you talk to your, it’s hard, you know, when you talk to your doctor, I think it’s really, really important to first figure out your questions before you go and have it clear because they don’t, they don’t have a lot of time for us.

So think of your most important topics that you wanna talk on, but also like what’s impacting your day to day. Um, that’s what matters to me the most. Like, am I able to pick my son up? I used to be able to go in a sprinkler and now I can’t go in the sprinkler. Like, what are the major things that are happening that are, are impacting my day to day and my ability to live a happy life? And, uh, for me, the things that are most important is me being able to show up for my son. Um, and, you know, picking him up from school, I used to be able to walk, there’s like a little hill, doesn’t matter. But I used to be able to walk to school, pick up, and now I have to do car loop because it’s just too much. And that’s, that’s an impact. So that’s something I have to bring up in my appointment. Um, and I think that’s what important ’cause you know, and even talking to your doctor if there’s something you love to do, I used to love to tap dance. I can’t do that anymore. Like bringing up those things, um, is really important. And they don’t, they can’t see that in the five, 10 minutes that they have with you.

[(12:52)] Stephanie: Yeah, absolutely. I mean, this is somebody you’re only seeing for maybe an hour a year.

[(12:56)] Julie: Yeah.

[(12:57)] Stephanie: [inaudible)] Um, so it’s really important to communicate those little nuances to them. Um, and as, as a clinician, seeing patients like that always really helped me grasp number one, like how their MS was truly affecting them, but also what I had to focus on in that visit. Right? So it’s important, like you said, to prioritize the things that impact your life, right? So if it’s your bladder keeping you from attending your son’s football games or your spasticity keeping you awake at night, um, communicate those things to us because like, we don’t have that much time with you and there’s so much we can do and there’s such limited time that it’s such a challenge. Um, and in terms of like treating the smoldering MS, right? So in the clinic, not only do we get MRIs, but we have you walk up and down the hallway, we have you pick up little pegs, we have you like, do those annoying tests where you’re matching numbers and, and shapes and torture, torturing you at some times.

People used to be like, no, don’t do it. I hate doing that. But it’s really important ’cause it gives us, um, little subtle ideas of how your cognition might be changing or your walking, um, or your upper extremity function. And I have used those tests, even if the MRI was stable, um, but the patient’s reporting to me like I’m not able to do the things I was able to do one or two years ago, and I’m seeing changes on those walking tests or cognitive tests. Um, I have switched therapies because of that. Because to me, that’s enough evidence to show that your current disease modifying therapy isn’t doing as good of a job as it could. And in my clinical experience, I saw people getting better if they do change therapy. So you might not think of these little progressive things being that important or something that your doctor like really cares to hear about, but it really can make a critical difference in the way that we approach your treatment. Um, and I think it’s so important. So the other point I wanna make too is what you said about rehab. And maybe you didn’t think rehab was for you in your younger years, or maybe like PT wasn’t that appealing. But as we progress and as symptoms start to impact our day-to-day lives more, they can be game changing, right?

[(15:29)] Julie: Oh my gosh. Like she, this, my, my physical therapist is Beth, she has changed my life and my, I really thought certain things were gone and like getting off the floor is, has been a challenge. And she’s like, we’re gonna get that back and I can’t jump. And she’s like, we’re gonna do it. And you know what? She’s right. We are doing it and that’s awesome. Yeah. And it’s like not, you know, I do it twice a week, but it’s been 16 weeks and it’s, I, I can’t imagine just assuming that it’s all gone. And that’s what I was doing. So I did myself a disservice by that because you just assume this is it, it’s just gonna keep happening. But there are things you can do. And if like your first physical therapist doesn’t work, find one that understands what your limits are. Because I, I’ve tried many and this is the only one that’s impacted my life.

[(16:16)] Stephanie: Yeah. Yes. It’s so important to find somebody with neuro experience specifically. Um, and occupational therapy, if there’s something you love to do and you feel like you can no longer do it, I really urge you to see an OT. We just did a fabulous podcast episode, which we can link to in the description, but their job is to help you continue to participate in life and do the things that you love. And I think they’re just wonderful human beings.

[(16:47)] Julie: Even, I mean, even cognitive therapy. I, my mom has FTD, so I like am there with her during it. And just some of the tools that they teach you, like when you go shopping, don’t look at your list and make sure, try and get every item on the, you know, just little things you could do. Because I do have cognitive issues because of MS. Some of them I’m grateful for because you just forget the bad times. But, um, I do think doing as much as you can to preserve what you have is in, within your power. I mean, obviously not everything, but trying really hard to do… Giving, I was so close to just being like, well, this is it now it’s walking stick time and now it’s this. And like, just going with the, I’ve lost it. It’s gonna keep progressing and I, it’s out of my control and now I’m learning that it isn’t completely out of your control.

[(17:33)] Stephanie: Yeah, definitely. And it’s exhausting. I get like that feeling of just falling down and just being like, do I really have to get back up again? This is so hard. But it really is worth it. And especially as, you know, we’re 10, 20, 30 years into, years into living with MS and we are seeing that gradual loss over time. Um, I really can’t stress enough like the power of rehab and even I’ve learned like kind of behavioral therapy, talking to somebody, helping reframe your mindset around a symptom can really make a huge difference. Like I recently did a, like a app using kind of behavioral therapy for bowel and bladder symptoms and really learned a lot about how my anxiety about the symptoms was feeding into making the symptoms worse. And then if the symptoms worse, I feel validated in in how anxious I feel.

[(18:34)] Julie: Oh yeah.

[(18:35)] Stephanie: Yeah. And that helped me break that cycle so it removed my anxiety or it helped me realize like, I’m in a heightened state of anxiety and let’s do a few things to calm it down. And sure enough, when I calm myself down, my bladder isn’t screaming as loudly.

[(18:52)] Julie: Right. For sure.

[(18:54)] Stephanie: So I think has there been anything like that for you that’s really reframed your mindset?

[(18:59)] Julie: Um, I would say like, I, I have to use catheters. So the bladder is a very, um, big issue for me. Um, and I fought that. I’ve had to do it for, it’ll be 18 years in January. Um, and when I met my husband he said, well, isn’t it like needing glasses to see? And I think that reframed. Um, because anything that helps you live a better, more confident, more fulfilled life, do it. Who cares. Like, is anyone gonna judge you? Who, anyone that’s gonna be like, oh, she has to use catheters. I don’t need them in my life. I don’t care. Like, I think as you get older it’s easier to do this, you know, I’m established in life differently, but when you’re younger, that’s hard. But I think it’s important even as a younger person to know the people that are worth having around aren’t gonna judge you for the aids, whatever the aid is.

Whether it be a walking stick or a catheter or a wheelchair or whatever it is, the people that are worth it in your life won’t care. So that’s, that’s how I reframe, I guess. Uh, that’s not as good as an [inaudible)] . I, I honestly will look into it, but I think, I think surrounding myself with people that see my value and my disease burden is not a burden on someone else. I carry the weight of this. I, I do not allow anyone to use it as their excuse. I won’t even allow my son to use it as an excuse. ’cause it is my burden. It is not his. And yes, MS impacts all of our lives and my family, but we have choices how we handle that. And that’s what I find really helps me reframe that. It is something that I carry, I will empower and you know, all the kids at my son’s school, I go and I do readings. Um, they’re like, well I want MS because it matters how you talk to them and it matters how you frame it. If you’re telling someone I have MS. And yeah. Or if you’re just like, I have MS, it’s something that I have to deal with, it’s okay. And it won’t impact your relationship with me. That’s, it’s, I think reframing how others see your disease is important too.

[(20:58)] Stephanie: Yes. A hundred percent. I find whatever energy I put out is the energy I get back. Yeah. And that was something I learned early on because I hated that like dripping and empathy, like, oh, I’m so sorry, I’m so sorry. That made my mood even worse. So I started learning exactly what you just said. Like the way you present it to others is the way that they’ll project it back. Um, and that in of itself helped me control the narrative so much, which is super important.

[(21:27)] Julie: So important. I, yeah. And I think I, I think that’s helpful, especially for newly diagnosed people ’cause they don’t know how to introduce it or it’s, you’re gonna be okay and like, it, it’s not gonna change. It’s gonna change your life that MS will impact your life in a lot of ways, but your relationships and all that, it shouldn’t impact.

[(21:47)] Stephanie: Yeah. Can you tell me a little bit more about how your family has been there for you and helped you adjust to this smoldering aspect of your disease?

[(21:58)] Julie: I, I think I’ve always been really transparent with my son and I think it’s really important to be open and have, sorry, age, age appropriate conversations about it. So he doesn’t need to know about Milan sheath, he doesn’t need to know about demyelination or anything like that. He just needs to know that, you know, there’s certain aspects. Like we play games like spot the potty whenever we go out and, you know, air conditioner missions when it’s too hot. And like, you know, even going to an amusement park the other day, he was like, you know, we should sit down and have a little snack. And like he knew my legs were getting tired. And I think it does help because it makes people more empathetic. Um, and realizing, you know, you’re not, you don’t only think of yourself in general. Like you should think about the people around you and how you can help them.

And if he notices, you know, I’m getting too hot, he’ll be like, let’s, you know, let’s get a cooling towel. This is fine. And you know, even with, he saw that I was like struggling with walking, he is like, next time we should get a scooter. I bet we’d like race around here. And, and making it cool and not something that I have to feel guilty about is really important. And I think my family does a really good job of that. Um, and I, you know, there are other things that happen in life. You know, I, I don’t wanna be a caregiver, full-time caregiver for my mom either. Like, there’s so many things, but I think the way we handle it is very important. And I, I am very proud of my son and the, you know, he’s the first person. We got sandwiches the other day and we had someone doing work at the house and he’s like, we gotta get one for the worker. And I was like, yeah, that’s right. No, like it’s really, it’s good to think of other people. And this, that’s the most important is having like a caring system that doesn’t pity you but is just nice kind people. It’s not, it’s just an, a good way to be.

[(23:50)] Stephanie: Yeah. And there have been studies that have actually shown that kids of parents with MS and other chronic progressive diseases do show higher levels of empathy are more likely to go into the medical field as a, as a result. So it’s not all bad.

[(24:06)] Julie: Oh yeah. Like even the other day he was like, you know, would be cool walking stick and he was saying like, you know, Harry Potter has wands or whatever. He was like, we should make a Harry Potter wand walking stick. So like, just I think like, I just think their minds are so, um, unprogrammed at that point that they don’t see it as like the world’s worst thing. Whereas, and you know, it doesn’t have to be… I obviously I’m fighting the walking stick for as much as and for as long as I can, but I love the fact that it won’t make my son feel sad.

[(24:42)] Stephanie: I kind of want a Harry Potter walking stick.

[(24:44)] Julie: Right. I was like, what about a Maui fish hook? And we were just talking about like lightsabers and all these different things. Um, but it is, it’s cool that he won’t see it as the world’s worst thing. And that’s something that like as a parent, you’re just constantly stressed. Like, oh, is this gonna make him embarrassed at school? Or his friend’s gonna like, make fun of him ’cause his mom has this and, and just proven to not be the case.

[(25:09)] Stephanie: Yeah. Yeah. So what do you think is the most misunderstood aspect of smoldering MS either in the medical community or general public, and how can we educate people about it and about the importance of addressing this hidden progression?

[(25:23)] Julie: I think it’s hard. Like you said, that we, they have a very limited time with the physician. Um, and so it’s hard for them to see how it impacts you. And so if you don’t articulate that they don’t know. Um, and I’m guilty of it myself, sometimes I forget to, you know, bring up, oh, you know, I remember at that park I used to be able to do that and now I can’t or I can’t walk on, you know, the, the water has been like the biggest impact for me, like the cold, um, which is something I never even knew was gonna be an issue. And, you know, so I think the biggest thing that we can do is really articulate what is impacting our life. And don’t wait until it’s so far down that it, it, it’s obvious. Like have that conversation when it’s beneath the surface.

Something that is constantly on, on your mind. You know, even before I was diagnosed, um, I was only focused on the bladder and bowel ’cause those were my most significant. I wasn’t focused on the tingling, the left leg weakness. I, you know, the vision issues because those, I can mask. The bladder and bowel was harder to hide. Um, but I think being fully transparent with your physician, that’s your, that’s your time. That’s your time to get your best care and you’re, you’re the only one that can tell what’s actually happening inside. Um, you know, I, I’m like, I feel like I walk on hot Legos all the time and that’s something that’s hard for them to understand. But you have to think of good ways to like, this is something that is impacting me. Here’s how it wasn’t impacting me last time I saw you. And, uh, advocating for yourself there, um, and taking the time. And if they don’t have time, find someone that does.

[(27:06)] Stephanie: Yeah. I completely agree with that. Thank you for your time, Julie. It’s always great talking to you.

[(27:10)] Julie: I love seeing you. I always love talking to you.

[(27:15)] Stephanie: Yes. Awesome. Thank you.

[(27:17)] Julie: Thank you.

[(27:18)] Stephanie: Thank you for listening to this episode of the Can Do MS podcast. If you like this episode, please leave us a rating or review on Apple Podcasts or Spotify. We really appreciate your feedback. We’d also like to thank all of our generous sponsors for their support of this episode of the Can Do MS podcast. Until next time, be well and have a great day.

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