Navigating MS Together: A Patient’s Journey and Her Neurologist’s Insight

Navigating MS Together: A Patient’s Journey and Her Neurologist’s Insight

Episode 191 – Podcast Transcript

[(0:24)] 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 talking about what it’s really like to be newly diagnosed with MS, emotionally, medically, and everything in between. I’m joined by Fran Pied, who went from long time MS advocate to MS patient just a few years ago, and Dr. Michelle Betz, Fran’s neurologist and an MS specialist at Sentara Neurology Specialists. Together, we’ll walk through these early months of diagnosis, treatment decisions, and how to move from uncertainty to empowerment with the right support. Hi, Michelle. Hi, Fran. Thank you so much for being here today.

[(1:00)] Fran Pied: Hi, Stephanie. Good to be here.

[(1:03)] Dr. Michelle Betz: Hi, Stephanie. Thank you for having us.

[(1:04)] Stephanie: Absolutely. So, it’s great that we have both a provider and a patient here and also for the audience they should know that the three of us know each other very well. We all live in Virginia and we’re very active with the MS Society together. So, this is going to be a fun chat among friends today. So, let’s start with Fran. You were involved, as I just mentioned, in MS advocacy with me. But this was long before you were actually diagnosed with MS. So, what was it like when it became your story?

[(1:35)] Fran: So, it was pretty shocking. I’ll admit it was kind of a holy crap moment for me. I had been involved as you said with the MS Society prior. I was involved with the MS Society because of my sister. My sister had MS. I lost her in 2019, and I saw being involved with the MS Society through a local council as well as bike and walk as something I could do to continue to take her legacy and fight for a cause. So, I became the chair of the council here in Hampton Roads and then even became a board member, and voila, one day I was diagnosed myself. So really was not something I was expecting. Threw me for a loop for sure. And I’ll say my beginning moments were really thinking from the perspective of I’m no longer an advocate or someone on the outside. I’m now really deep in the middle. So, it was rough but looking at it because I had lots of resources, lots of knowledge, lots of support, it certainly helped me think about the way forward. And some of those first early moments of the way forward were then starting to think about how I shared it. For example, my mom is 94 and how do I share with her when she struggled losing my sister? I was hoping to maybe send her to heaven without telling her. However, she was so savvy at 94, still active on social media, etc. that I realized I had to do that. Also telling my husband, my children, my sister’s children and her husband, those kinds of things. So those were my beginning moments, I’ll say.

[(3:38)] Stephanie: Yes. And I know it was really hard for your family to go through again, because as a family that was already affected by MS, to now have another personal connection is never easy. And I know you and I talked a lot about how when your sister was diagnosed and when you were diagnosed are completely different times. And to Michelle, I guess many people listening, their first question when they hear Fran’s story might be, does having a family history mean that I have a bigger risk for MS and should I be scared? What do they need to know?

[(4:14)] Dr. Michelle: Yes, absolutely. Great question. I think even without having a family history of MS, if you’re sitting there as a parent or a sister or a brother to someone, it’s normal to have that question of what is the risk of other people in my family? And to the best of our knowledge, that risk is somewhere between 2% and 5% increased risk from the general population, meaning that the risk of anyone getting MS is around 1% if not less. So that risk does go up, but it’s not 100%. We know that there’s a lot of factors that have to play in with MS, and some of those are genetic. We’ve identified over 200 different genes that are linked with MS in different types of autoimmune disorders. So, there’s definitely a risk factor, even if your family doesn’t have a history of MS, if they have a family history of some sort of autoimmunity. We also know that from twin studies, so if you have identical pretty much DNA as a twin and identical twin that that risk is somewhere around 25%, so it’s definitely not 100% risk but there is an increased chance there. And I think it’s a really valid question that people would have because given this diagnosis and knowing that it’s lifelong, people want to make sure that their family and people that they love are going to be safe and live the best life they can.

[(5:45)] Stephanie: Yes. And having an awareness of what MS is and what to look for, I think helps, right? Because Fran, you immediately sought attention when you had symptoms, right?

[(5:55)] Fran: Yes, I did. Well, I’ll say for this purpose, yes, I did. For me, I struggled with it for probably a month and a half of knowing I had some symptoms that I was trying to explain away. I was actively training for Bike MS and really trying to tell myself the tingling and numbness were maybe a pinched nerve from over training, that kind of stuff. But clearly, I recognized much sooner than most people do that the symptoms I had were not ones I should ignore and were not ones that were a pinched nerve. So, I did. I reached out very quickly. I went to my primary care doctor who came and said, “I think you might have MS.” That was one of her first statements to me. And then suggested connecting with neurology and going down that path. I was very fortunate that I was able to get in fairly quickly with neurology. I again, having a lot of knowledge of what was going on and I’m certainly not a physician. However, I had awareness of what would be needed as far as starting a workup, etc. So, I did advocate for myself and get the ball rolling a little sooner than probably most people would have been able to.

[(7:22)] Stephanie: Yes. But that’s the power of awareness and knowledge, right? Because the biggest barrier to diagnosis or the biggest delay in diagnosis is often because people aren’t aware that these sorts of minor symptoms mean that you should go see a neurologist. I know myself, I had minor things for years that I ignored. I’m sure, Michelle, you would agree that you often see people probably that going back years could have picked it up and started treatment sooner.

[(7:48)] Dr. Michelle: Yes, most definitely. Unfortunately, I think having awareness in the community about MS or diseases that look like MS is so important. Us as women, so the statistics for women in MS, about 75% of patients are women, 25% being male. I think as women we kind of power through things and maybe sometimes we overlook little things or things that might seem little to us. Like Fran had outlined, a numbness or a weakness that kind of comes and goes. But certainly, knowing some of the signs and symptoms of MS is very important and to get hooked up with a neurologist as quickly as possible so that you can get a diagnosis. We know that patients that have a diagnosis with MS and can get started on a treatment program, they do better long-term. They have less disability. They have less disease progression. So, the quicker we can get perhaps a disease modifying therapy started is really in the best interest of the patient.

[(8:53)] Stephanie: Yes, thank you. And guilty as charged. That was me in a nutshell, powering through and ignoring my own health. So don’t be like me, be like Fran. So, Fran, you and I talked early on that the first year is really like crisis mode, right? Can you walk us through that first year, both emotionally and logistically?

[(9:12)] Fran: Okay. So, as I said, my first focus was getting care quickly. So, I really did advocate for myself and didn’t accept things like appointments not available, I asked to be put on cancellation lists. I was willing to take anything as far as if an MRI is available at 2 a.m., I’ll take it. So really recognizing that we can speed things up. It is sometimes hard to get the whole journey down the path, but once you’re diagnosed, that first year, really, as I talked about, who do you tell? How do you tell? My husband on one hand really wanted to tell the world. I wasn’t quite there. He wanted to tell the world for his own, I’ll say, need to do something. He felt that telling the world would help bring money to help raise for whether it was bike, walk or what other means there would be, where I really needed more time. I’m not someone who likes to be in the limelight to begin with, so I really needed a little bit more time. So, I had to think about balancing advocacy versus being the patient.

And while I really wanted, of course, to be able to continue to raise money, because as I said, I’d already had a bike team in memory of my sister. I also went through counseling. I decided that while I was struggling with how to tell my mom or if I tell my mom, I reached out to a counselor. And in doing that, not only did I come to the decisions of how to tell mom and family, etc., I also had a great counselor who asked me questions about how I was managing things and not just about how I help other people. Because as Dr. Betz mentioned, as women, we tend to do some things which might be not seeking care or might be taking care of everyone else besides ourselves. So, while I thought in my head, I was going to talk to a counselor to help me prepare my mom or my family members, the counselor was really good at saying, “Well, let’s pause and think about you. How are you coping and managing and what are your thoughts and fears?” and things like that with knowing that my sister was diagnosed more than 30 years ago, I was very eager to start treatment because I saw the period of time where she had no treatment options. So those were the kind of things in my first year that I think really are important for folks to know that a. figuring out who to tell, how to tell, it’s really up to you and what you want to share, go to a counselor. It’s okay to talk to someone. In fact, I really encourage it. I think that with counseling and my faith, because I certainly used my faith and church as another path to help me see the way forward. And the MS Society, my friends and family at the MS Society surrounded me. And really realizing that it’s okay to not feel good about it and it’s okay to see that there are so many resources in the community, you just have to be willing to ask for them or to go seek them out.

[(12:59)] Stephanie: Yes, that is all such amazing advice. And Michelle, Fran obviously, when she came to see you was extremely informed. But I would say most newly diagnosed people probably aren’t. So, what do you notice in your practice when someone hears you have MS for the first time?

[(13:19)] Dr. Michelle: Yes. I think it’s a mixed kind of bag of reaction. Some patients are very surprised and very scared of what that’s going to mean for them long term. Will it mean that they can’t walk in 10 years? Will it mean that they need a wheelchair, that they need help from their loved ones? So, I think there’s definitely a level of fear and uncertainty. Unfortunately, one of the most difficult parts of this disease is having that uncertainty, especially given that everybody is so different. But at the same time, you see lots of different people, let’s say, in the community with MS. It’s important to remember that your journey is not someone else’s. And I try to reassure our patients that, “Hey, just because you see someone else that might be having certain struggles, those don’t mean that they will be your struggles with this journey and this disease.” So, it’s sometimes fear. And sometimes it’s relief because patients have had symptoms for years or months and maybe they’re doubting if these symptoms are really occurring, maybe their family or friends are giving them some uncertainty in that realm.

So, with their, really confidence in knowing that they’ve been diagnosed with something and that there’s definitely different steps that we can take, whether it’s to assist with symptoms or to help to slow down the disease. I think they sometimes feel empowered that at least they have a name to this. It’s not uncommon that patients will get very emotional and perhaps even cry. And it’s a mix of that they’re happy that this has a name, but at the same time, they’re not sure what the next steps will look like. And I think it’s our job as providers to just reassure and to let them know that we are on their side, we are part of their team and now part of their life. I’m blessed to have Fran in my practice. She’s been such a big advocate for the MS community. Before she was diagnosed and now being diagnosed, I mean, to step in the limelight and to wear this on her chest, it’s been amazing to see the transformation that she’s had that I think she’s hopefully truly understanding what an impact she has on other people that are going through this.

[(15:34)] Stephanie: Yes, she does. Although she’ll never take the recognition or praise for it.

[(15:41)] Fran: I’ll say I said earlier, I don’t really like the limelight. However, one of the parts that I think was the hardest for me, Dr. Betz mentioned that some people are emotional. In the office when we heard the diagnoses, I already knew. I knew because I knew what to look for in my chart. I could tell. My husband was emotional. He was very scared. I stayed pretty calm and even [inaudible] and even probably answered some of his questions or guided him in asking questions. My emotion came when I got home and in the days that followed. And it was really a lot of emotion about my sister and feelings of, “Gosh, did I ever really asked her what she felt, what symptoms she had? I saw things, but what did we really talk about?” So sometimes when I’m asked to be in the limelight, I remind myself of those unspoken or unknown questions I didn’t get to ask and wish I had. Because there is a level of feeling alone. That was also pretty present in that first year of… it’s great when people say you’re not alone, but it’s so hard to believe it. Because you do feel alone. You can have people all around you, but they’re not you and they’re not experiencing it in the way you are. And that’s okay. I’ve had to learn that aloneness is not as scary as it feels, and I’m not ever as alone as I thought I was. So, the emotion is alive and well, no matter how much I knew, how much I know, or how long it goes as far as time between diagnoses and now. So, I try hard to advocate for all of us because we’re all together in this. And I’m so appreciative that we have clinicians like Dr. Betz, like there’s no doubt she is who I will see, want to see, I will move wherever she moves. I’m not going to stalk you. I don’t mean it that way. But seriously, it’s hard to find a great clinician, a great neurologist that focuses on what you have and how blessed I am that I have her.

[(18:25)] Stephanie: It’s one of the most important relationships when you have MS, for sure.

[(18:30)] Fran: For sure.

[(18:31)] Stephanie: Thank you both for being so open and vulnerable. We’re going to take a brief break for a message from our partner. When we come back, we’re going to dive into treatments and what’s next and what life has looked like for you in the past couple of years.

[(18:50)] Jamie-Lynn Sigler: The following message is brought to you by Novartis. Since partnering with Novartis, I have been thinking a lot about when I was first diagnosed with relapsing MS. To be honest, I was overwhelmed and in denial and I didn’t want to accept it. Eventually, I had to be real with myself, reflect on what was important, reframe how my diagnosis was impacting my life, and focus on how I was feeling. And I wish I’d started thinking about my needs sooner. It helped me get to a place of acceptance and find the right treatment choice for me. And I really hope others don’t wait as long as I did. That’s why I partnered with Novartis to create a three-step guide, hoping it can help people speak up and voice their needs. Get the guide at reframingms.com.

[(19:43)] Stephanie: Welcome back. We just went through sort of the emotion and the logistics of that first initial diagnosis. So, when we left off, you had an answer, we had a name, and now we’ve moved on to, okay, what’s next? So, once you had your diagnosis, what were the first questions about treatment and about how you were going to move forward?

[(20:08)] Fran: I was really eager to know what treatment options I had. So, what DMTs are out there? What are the side effects? I’m kind of a cerebral person. I need to do some research. And I have very good, as I said, lots of support and just a great mentor who’s an immunologist whose wife also has MS, that I wanted to pick his brain and really just dig into it. That was my way. The more I could touch, look, and feel, the more real it was, the more I could empower myself with how to make the decision. Dr. Betz gave me options and then gave me the space that I needed. She recognized I needed some space to go ahead and dig into it. So, she gave me the space that I needed. And in that time that I was looking, she did give me kind of a timeline to say, “This is when you need to decide by.” She didn’t kind of just say, “Go forth and conquer.” But some of what I did in that time was things like looking at what the side effects might be. What was the method? Was this going to be an oral pill? Was this going to be an injection? How frequent would the injections be? Who would do the injection if I chose that? And because of my background, I was also focused on I didn’t want to suppress my immune system if I didn’t have to. And if I had to, I didn’t want to do it really strongly unless I had to. I’m the person that believes you don’t bring a machine gun to a water gun fight. So, I was really wanting absolutely to go on treatment, but I wanted it to be as minimal as possible and still be effective. So, there were conversations with my husband and a little bit of work consideration. My job is Monday through Friday for the most part, well, 8 to 6 kind of life. And the thought of would I have to miss a day of work here or there? What does this mean? So that’s really what I went through when I was looking at what my treatment options were. I think any other thoughts I had then really were around when can I start treatment? I really was eager to get started.

[(22:53)] Stephanie: Yes. And that’s a really great example of one way to approach shared decision making. So, Michelle, how do you guide those conversations? We heard a little bit from Fran’s perspective, but especially with patients who might be overwhelmed or a little less sure of where to start.

[(23:11)] Dr. Michelle: Yes. So, for me, I mean, one of the neat things about being a neurologist in this field is that we have so many options. When I started out, we didn’t. And over the decade plus that I’ve been in MS neurology, we have close to 30 different options. And I guess you could look at it kind of half full, half empty. The glass half full, half empty where, “Wow, that’s a lot to choose from. So where do we start? That’s overwhelming.” Or “Wow, we have a lot to choose from. Let’s jump in and pick one.” So, I really do it, and I’m sure most neurologists do it on a case-by-case situation. We know that there are certain risk factors that patients have that perhaps can make them more vulnerable to having a poor prognosis with MS. For instance, African Americans have a tougher go at it. Males have a tougher disease progression. And in most cases, again, this isn’t everyone. So, with that in context, we’re making all these decisions together, but I’m trying to guide as best as I can which drugs I think would be the most efficacious. We also talk about how they’re given, how they’re tolerated, side effects, how they work, all those different factors go into making a decision. And I like to take the list of almost 30 MS drugs and bring it down to maybe 2, 3, or 4, so that a patient can walk away knowing that I’m not trying to overwhelm them. I’m just trying to get them to a good place of, “Hey, I think these are really going to be the best fit for you.” I have another group of patients that sometimes want me to make the decision, and they’re very much, “Hey, you’re the expert. I trust your judgment. Please, just pick something.” And I think it’s important in this journey that they really do have a voice, because I think that helps to empower them to say, “Okay,” like Fran is outlining, “There’s certain things that I don’t want in a drug,” “there’s certain things that I’m willing to tolerate.” And by kind of having that power of choosing which drug might be best for them, I think it helps not only for them to be more compliant with it, but that they really feel like they have some control in this situation that to a certain degree can be a very difficult thing to control.

[(25:35)] Stephanie: Yes. I think that’s really well said. And you’re so right that it’s so different even from, I mean, Fran’s sister didn’t have any options. When I was diagnosed, it was everyone started on a daily injection, that was it. And now it’s truly this menu of, “Are you needle phobic? Would you prefer a pill? Would taking a pill everyday make you feel like a sick person? Maybe your lifestyle means an infusion that’s less frequent is a better fit,” right? So, it’s just a whole new landscape, but a lot to fit in to a very relatively quick conversation.

[(26:15)] Dr. Michelle: Right. And I think when you take that on the heels of, in most cases, telling someone that they’ve been diagnosed with MS, the visit is an emotional roller, right? They’re being told that they have a disease that’s lifelong, then they’re being instructed on all these different choices. So, I think it’s important that, as you both outlined, you have a provider that’s really willing to sit with you and to chat about this and to hear you out on what’s important. And I hardly ever have a patient make a decision the day that I’m telling them all this info because I just feel like it’s way too overwhelming for anyone in their best moment to make this decision for perhaps months or years. So, I encourage patients to think about it, look up websites like Fran was outlining, take some time, talk to your family if you feel comfortable doing that and to really try as best as you can to embrace whichever choice you’re making.

[(27:17)] Stephanie: Yes. Oh, excellent advice.

[(27:19)] Fran: I might chime in about one thing…

[(27:20)] Stephanie: Yes.

[(27:21)] Fran: …that Dr. Betz said that I think is important, and I’m going to speak on my own experience of I chose something that’s an injectable. So, I am a person who works in health care and never worried. I did not think for one second that I’d bother me about having to have a shot. Now having said that, I also decided I would do it myself because there is a level of feeling like you have no control. So, by doing my own injections, I have control of when I do it. I have control of how I do it. I have that control. I’m certainly not someone that loved needles, but I didn’t think they would bother me. And I will admit that first day when I went in the office to demonstrate it, that was kind of daunting. I was surprised that it was harder than I thought it would be, but truly that first moment is really the only time it was hard for me. And being able to take something back that you can have control of, I think is important. Whether you’re brave and want to do the injections yourself or not, that’s just one example. I think it’s important to find something that you do have control of.

[(28:45)] Stephanie: Yes. And all treatment is doing something, right?

[(28:48)] Fran: Yes.

[(28:51)] Stephanie: And as Michelle said earlier, it took a while for my diagnosis to come in to rule out other things. And when it finally had a name, I was like, “Oh, heck, yes, There’s a name and there’s a treatment. Let’s go. I can control that.” And yes, as a nurse, I thought I would be so easy breezy, no trouble giving myself an injection. But this was karma because it was really scary to do to myself. It’s like your brain doesn’t want to push that button. But I did overcome it. And then I was just imagining like this is me punching MS every day.

[(29:30)] Fran: Agreed.

[(29:33)] Stephanie: But one of the hardest parts, even for me, being somebody who treats MS is knowing what’s MS and what’s just life and how did you navigate that, Fran?

[(29:46)] Fran: So, I’m not sure that I have. What I mean by that is I’m not always sure if what I’m feeling is MS, is my age, is just something else.

[(30:01)] Stephanie: Your busy job, perhaps? Your busy job, your big family, your responsibilities. Yes.

[(30:07)] Fran: Yes. It’s stress. So, it is definitely still something I sometimes wonder. The obvious things, the symptoms I started with with tingling and numbness on my left side from head to toe. That comes and goes. It’s pretty persistent in my foot and lower leg. So that’s pretty obvious. But the fatigue, at times I question, “Am I really this tired because of MS? Or am I this tired because I didn’t go to the gym yesterday?” Because that does sometimes make me tired, and that’s another path I think that’s important for folks to know. For me, fitness is really important. It a. reminds me that I’m still very active, very capable and can do all the things I want to do, but it also is a mental moment of I need to be able to do this. So, your question about what I have done with it, I’m just trying to figure it out as I go. And fitness for me, I see a trainer several times a week, I ride my bike, I just try hard to keep moving and when I have a symptom, I first ask myself is this symptom significant enough that I need to do something about? Meaning stop exercising or see a provider. If the answers to those are no, then I pretty much just continue on. But if the answer is yes, then I stop. I don’t want to push through and then cause further harm to myself. I worry about that a little bit. So, I’m figuring it out as I go and I just ask a lot of questions. I call friends like Stephanie or Dr. Betz.

[(32:01)] Stephanie: Michelle, as a neurologist, do you want your patients reaching out to you?

[(32:05)] Dr. Michelle: One of the best parts of technology, and I’m by no means technologically savvy, but the ability for patients to reach out to their healthcare providers in this day and age is, I think, just tremendous. It’s such a great opportunity for us to connect. One of the best ways, at least in our practice, that we encourage patients to reach out is through something called MyChart. So, it’s basically like emailing me and asking a question about how they’re doing or how they’re tolerating something. So, I would highly recommend if you don’t have that connection with your provider that you inquire about it. I think it’s only reasonable for a patient to be able to reach out to their neurologist or their neurology team and get an answer back in a timely manner. And unfortunately, if you’re not getting that response, I think it’s important that you make sure that you find a provider that’s able to provide that to you.

[(33:03)] Stephanie: Yes. Because I know, especially when you’re newly diagnosed, it’s so scary to have a new symptom whether you think it’s MS or not. So, what can people expect their provider to do if they reach out with a potential new symptom or relapse?

[(33:19)] Dr. Michelle: So, I think the first step is to make sure that it is something that we classify as a relapse, right? There is something called pseudo relapses where patients can perhaps have other factors that are influencing their old MS symptoms. For instance, if you normally have, let’s say, some numbness on your left leg and you have a cold or you have a urinary tract infection or you’ve just been really run down and stressed and overworked, you may have that symptom come back. And we don’t classify that as a true relapse. We classify that as a pseudo relapse. And we do our best to, if it’s an infection, we’re going to treat the infection. If it’s a symptomatic thing, like you’re having a lot of fatigue, we talk about maybe a symptomatic medication for that issue. If you’re having numbness, we talk about maybe neuropathic medication to help to decrease any sort of abnormal or painful sensation you’re having. So, we treat pseudo relapses in a particular way. Important to just recognize that if you’re having a new symptom, regardless of if you’re not sure if it’s MS or not, to reach out to your provider.

We typically say if you’re having anything new, meaning a numbness, a weakness, a vision issue, a balance issue, urinary issue, if you’re having it for more than 24 hours, that’s definitely something that you need to contact us about. And if you think about what an actual relapse is, right? If you’re thinking about MS and its damage to the wire or the nerve that’s supplying all these different body parts, it would make sense that that needs to be something that’s more sustainable than maybe just a couple of minutes or seconds. It’s damage to that nerve so it makes sense that it would last for a period of time, and we use that 24-hour mark kind of as a good stretch of, “Okay, this isn’t something that’s just going to go away overnight.” At the point that we’re recognizing that somebody has a relapse, there’s definitely interventions that we can give. IV steroids are typically our first go-to. Of course, they do have their own side effect profile that we have to be very careful and cautious with and educate our patients about. And then, also talking about, “Hey, have you been on your medication, your disease modifying therapy, has there been an issue with compliance or maybe not receiving it? Maybe it’s just not the right medication. So, it’s a lot of layered conversations with the first being that reaching out to your provider, how important is that? If you’re not sure, even if you are pretty certain and then expecting a call back or a response pretty rapidly.

[(36:02)] Stephanie: Yes. Because just as it’s important to get on treatment early, it’s also important to pick up if that treatment isn’t working, right?

[(36:08)] Dr. Michelle: Absolutely.

[(36:10)] Stephanie: So, Fran, now you’re at the two-year mark. Can you tell us looking back, what’s shifted for you from the beginning to now?

[(36:19)] Fran: Okay. So, year one was really around embracing I had MS and accepting the diagnoses, finding the treatment path, logistics of what is all of that going to look like. Year two has been more about, because I’ll be two years in September, so we’re close, adjusting my lifestyle a little bit. I’m finding significant heat insensitivity and fatigue, which I don’t really feel like I had in year one. So, some of it I’ve just had to embrace it’s okay that I change something. I was supposed to do a big bike ride up in the Adirondacks in New York in July. Well, I just couldn’t do it. I didn’t go. It was too hot. I had some other issues. So, I’m going to do it in October when it’s cooler. So, I’m not giving things up. I’m just modifying and also modifying my expectations around things. So, I think year two has been about finding joy and purpose in things and embracing family and the support and the fun we’ve had. I’ve had a great year with my bike team and the walk team, but really, the fun, it doesn’t have to be gloom and doom. So really enjoying and embracing those events that I’ve enjoyed doing before my diagnoses and now after my diagnoses and just realizing it’s okay not to push through every time.

[(37:58)] Stephanie: Yes. And I also had a lot of questions. I wanted to know if I’d be still walking in 10 years. Could I still have a family? I was very young when I was diagnosed. My first neurologist actually advised me to change careers because of the stress level involved, which of course I didn’t do. But there’s also like the day-to-day things, like do I have to completely overhaul my lifestyle? Should I not eat dessert? Can I still have a drink out with my friends? Do I have to avoid going to the beach because everybody says heat is so bad for MS? So, it’s just like, you’re just inundated with all of this advice and information. So, Michelle, how do you begin to help people navigate all those little, but not so little things?

[(38:46)] Dr. Michelle: Right. So, one of the key words when I think about an MS patient and what kind of qualities they have in order to navigate those things is resilience. So, to just remember that the majority of MS patients I see hands down are very resilient people. They become very flexible. Just like you both are outlining, when there is an obstacle in their way, let’s say they want to go to Busch Gardens or an amusement park with their family and it’s hot and they have to walk. They get around that in different ways, whether it be they’re getting an assist device or they’re taking lots of breaks in an air-conditioned facility. They’re finding ways to navigate this. So, I think it’s important to remember that word resilience. Unfortunately, this disease is lifelong and for some patients it comes with disability, and it comes with things that patients haven’t signed up for, right? I mean, patients aren’t signing up for wanting to use a walker or wheelchair anytime in their life. But again, everybody’s journey is so different. To remember that just because another patient might have a challenge doesn’t mean that it would be your challenge as well. MS is not a death sentence. People don’t typically pass from MS. Unfortunately, sometimes they can pass from complications related to it, but that our goal as healthcare providers is for patients with MS to forget that they have it, right? To put it kind of as far behind them as possible. I understand that’s probably a tough concept, but that we’re here to support with that journey and in that journey that patients can live their best life, that they can do everything that they have wanted to do. And just like Fran outlined, you might not be able to do it on a certain date and time that was planned, but that you’re flexible and you’re resilient in that you can navigate that and move around it and eventually get to your goal.

[(40:50)] Stephanie: Thank you. I think that’s all really excellent advice. Any key takeaways or last thoughts before we wrap up? Fran, I’ll go to you first.

[(40:59)] Fran: I’m going to kind of say something that I said earlier. I mentioned that in the beginning when I’d hear things like you’re not alone, I didn’t really embrace that. It felt like I was, but I’m going to say you’re not alone. You really aren’t. You have to find your people, find your path, and find your resilience because MS doesn’t define us. It’s just a diagnosis we have. I have an orange bracelet that I wear on most days, but on days I don’t want to carry MS, I don’t wear the bracelet. It’s my way of saying, “No, not going to think about MS today.” So, find your path and know you really, really are not alone.

[(41:44)] Stephanie: Thank you. Michelle?

[(41:46)] Dr. Michelle: I think a takeaway would be to just remember that it is a journey and it’s not a destination, that it’s not a sprint, it’s a marathon, and that’s anything in life. That we’re navigating this together and like Fran outlined that there’s support to be had. If you don’t have support with family and friends, you have support with your healthcare team and that they should be advocating for you just as much as anyone else. And if you do feel sad and you feel upset about what’s happening in your life, that’s okay too. To not shy away from those feelings, you work through those feelings. And by doing that, it’s going to make you stronger in the end. I’m certain that most patients with MS are stronger than they’ve ever thought that they could have been, and that that has to be the silver lining in this disease.

[(42:41)] Stephanie: Absolutely. I couldn’t agree with that more. Thank you both for being here. It was such a great conversation, and I really appreciate your time.

[(42:50)] Fran: Thank you for having us.

[(42:51)] Dr. Michelle: Thank you, Stephanie. And thanks, Fran.

[(42:53)] Fran: Thank you.

[(42:54)] Stephanie: Thank you for listening to this episode of the Can Do MS Podcast. If you liked this episode, please leave us a rating and review on Apple Podcasts or Spotify. We really appreciate your feedback. We’d also like to thank Novartis for collaborating on this episode of the Can Do MS Podcast. Until next time, be well and have a great day.

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