Episode 468: You've Been Given a 15% Chance of Living and Your Spouse Gets Diagnosed with MS with Kathleen Silva

0:18 It's August 18th, and we have a lot to talk about. Imagine your spouse or significant other has been diagnosed with MS. Shortly after, you were diagnosed with stage 4 colon cancer and given just a 15% chance of survival. All of a sudden, the roles of patient and care partner are up for grabs, and they change with almost daily frequency. Well, that's exactly the scenario my guest Kathleen Silva faced. And Kathleen is joining me to discuss how she and her husband Rick survived and even thrived amidst all of that frightening chaos. And spoiler alert, no one died.

0:59 But before we meet Kathleen, there are a few other things that you should know about. There's a major blind spot in how MS relapses are treated, and the good news is there's an experimental therapy that's aiming to change that treatment paradigm. If you live with relapsing-remitting MS, then you know the drill when a bad relapse hits. Severe symptoms emerge, whether that's sudden vision loss from optic neuritis, extreme weakness, or balance issues. And the standard medical response is almost always a heavy course of high-dose corticosteroids.

1:39 Now, steroids do an important job. They act like a fire extinguisher for acute inflammation. But here's the important detail that often gets left out of the conversation. Steroids don't protect nerve fibers from being permanently destroyed during a relapse. That's why so many people find that even after a relapse resolves, recovery is incomplete, often leaving them with lingering symptoms and worsening disability. Privosector is an investigational therapy that's been given the green light by the FDA to expand into clinical trials for acute MS relapses with a completely different approach, direct neuroprotection.

2:25 To understand why this is a big deal, we need to look at what actually happens inside the central nervous system during an acute relapse. When the immune system flares up, it doesn't just strip away the protective myelin coating. The toxic environment created by that inflammation directly attacks the axons, the long, delicate electrical wires that connect your brain cells, and once an axon degenerates, that nerve signal is lost. Current disease-modifying therapies do an outstanding job of lowering the frequency of relapses. Steroids shorten how long the acute inflammation lasts, but neither treatment protects that naked axon while it's under attack.

3:09 This is where Privosector comes in. Privosector is an intravenous therapy designed not as an immune suppressant, but as a neuroprotective shield. Instead of targeting the immune system, it works directly at the cellular level to help nerve cells and their axons survive the toxic stress of an acute MS relapse. Privosector has already been evaluated in phase 2 clinical trials and is currently in phase 3 trials as a treatment for acute optic neuritis. Now that's inflammation of the optic nerve that causes sudden vision loss, which, by the way, is often one of the earliest and clearest symptoms in an MS relapse.

3:52 The proposed regimen for privosector is an intravenous infusion given once daily for five days during that acute relapse window, which is similar to the time frame used for steroid treatment. The primary goal of the clinical trial will be to assess an individual's recovery as early as three months after an acute relapse, measuring whether preserving axons during the attack leads to better functional recovery and less lingering disability. Now, privosector isn't meant to replace your disease-modifying therapy. It's being developed as an acute intervention to deploy when an attack happens, designed to stop permanent nerve loss before it sets in. And that's the paradigm shift.

4:39 The reality of an MS relapse is that the neurodegeneration that occurs persists long after the inflammation has settled down. And over a period of years, that neurodegeneration is driving the silent accumulation of disability. While there are more than 20 DMTs available to reduce the frequency of relapses, there are no neuroprotective therapies to preserve nerve tissue when a relapse does occur. Privosector is still an investigational drug, and it will need to prove in clinical trials that protecting axons during a relapse translates to tangible, long-term functional recovery for patients.

5:21 But the shift in research focus from simply calming inflammation to actively shielding nerve fibers is exactly where acute MS care needs to go. This clinical trial will get underway next year, and we'll be watching closely as the data develops. You know them by names like Ozempic, Wegovi, Zepbound, and Monjaro. These popular GLP receptor agonists appear to be the wonder drugs of the 21st century. In addition to managing diabetes and promoting weight loss, researchers are finding that these drugs are also effective in reducing the risk of heart attack, reducing high blood pressure, protecting against chronic kidney disease, improving fatty liver disease, reducing addictive behavior, and potentially mitigating cognitive decline.

6:17 Yet most people living with MS who meet the FDA-approved criteria for these medications aren't using them. Now, as of today, these drugs are approved for managing diabetes and promoting weight loss. Yet, the results of a large survey conducted through the NARCOM's registry reveal a massive gap between who in the MS community qualifies for these medications and who's actually receiving them. Researchers analyzed data from 4,181 survey participants to see how many met the clinical criteria for GLP-1 therapy and how many had ever taken these drugs. And they found that a full 40% of the survey respondents met FDA-approved indications for GLP-1 drugs like Ozempic and Manjaro, primarily based on their body mass index and other related health conditions.

7:12 Yet, only 7.4% of the survey participants reported ever actually using one of these medications. That means the vast majority of people with MS who meet standard medical criteria for a GLP-1 prescription are not on these treatments. And that should be concerning for our community. First, metabolic health and other vascular health conditions are known to influence long-term MS disease course and individual mobility. When conditions that qualify someone for GLP-1 therapy go unaddressed, it puts extra strain on their overall neurological health. Second, it highlights ongoing real-world barriers that might include insurance hurdles, coverage denials, out-of-pocket costs, and discussions that simply aren't happening during routine neurology appointments.

8:07 So this is where you get to be your own healthcare advocate. It. If you have questions about whether managing your metabolic health or exploring GLP-1 therapies fits into your broader care plan, you're the one that needs to bring it up with your health care team. Now, if you'd like to review the details of this study, you'll find that link in today's show notes. While disease-modifying therapies do the heavy lifting and managing multiple sclerosis, the everyday choices we make are lifestyle habits. Well, they can play a measurable role in how the disease unfolds.

8:47 That's why, especially when it comes to the unpredictable nature of MS, I think it's important for us to talk about the power of knowing what you can control. In a study from Germany, researchers followed 1,374 adults diagnosed with either clinically isolated syndrome or relapsing-remitting MS for up to six years across 22 study centers in Germany. Now, none of these participants had started any MS treatment when they enrolled in the study, which provided the researchers a clean baseline to track how two specific habits, cigarette smoking and alcohol consumption, impact physical disability, walking speed, cognitive sharpness, and MRI lesion activity over time.

9:35 So let's break down what the numbers showed and what they mean in practical terms. When it came to smoking tobacco, about 32% of the participants reported smoking at the start of the study. The researchers tracked whether the smokers were more likely to reach key disability thresholds during the six-year follow-up, and they found that smokers across all categories, that is light smokers, moderate smokers, and heavy smokers, they all showed increased odds of reaching an EDSS score of 3, which marks the shift into moderate disability. For light smokers, that risk was significantly higher, with an 80% increase in the odds compared to non-smokers.

10:23 So if you smoke if you're a light smoker, please take a minute to let that sink in. When it came to walking speed, the study used a six-second threshold on the timed 25-foot walk test as a benchmark for meaningful mobility decline. Light smokers faced an 85% increase in the odds of hitting that slower walking threshold compared to non-smokers. And when they analyzed differences in cognitive function, changes in processing speed and memory were less consistent across the participant groups. They showed no clear statistical pattern. But there was a critical nuance in the MRI data.

11:05 Smoking did not significantly correlate with higher numbers of new T2 lesions or active gadolinium-enhancing lesions. This suggests that smoking's harmful impact in MS may be driven by ongoing direct neurodegeneration and nerve damage rather than acute visible inflammation. information. Now, the study also evaluated alcohol use, categorizing about 27% of the study participants as non-drinkers, 68% as occasional drinkers, and about 4% as regular drinkers. And at first glance, the statistics showed that occasional drinkers had lower odds of reaching the disability cutoffs for EDSS, walking speed, and cognitive decline compared to non-drinkers.

11:53 But before you take that as a reason to start drinking, the researchers explicitly emphasized a very important concept in epidemiology called reverse causation. That means alcohol isn't necessarily protecting the brain. Instead, people who feel physically better and have milder symptoms are probably more likely to participate in social drinking. Meanwhile, people experiencing greater disability, fatigue, or medication side effects, well, they often cut back or stop drinking altogether. But the authors were very clear. This data does not support using alcohol as an anti-inflammatory strategy, and any potential association has to be weighed against the known health risks of alcohol.

12:41 So what are the clear takeaways from following these 1,374 study participants for over six years. First, smoking accelerates physical decline among people living with MS. Smoking is directly linked to reaching moderate physical disability and walking impairment sooner. If you smoke, quitting is one of the single most impactful, proactive steps you can take to protect your mobility. Second, lesions don't tell the whole story. The lack of new MRI lesions among smokers reminds us that silent nerve damage can happen under the surface even when standard inflammation markers look stable, a condition now known as progression independent of relapse activity, or PIRA.

13:31 And finally, don't misinterpret the alcohol findings. The apparent protective trend with alcohol is most likely a reflection of who feels well enough to drink. It's not a medical benefit. If you're looking for resources or support to help you quit smoking, talk directly with your neurologist or primary care team. There are evidence-based programs that are designed to help you. And if you'd like to review the details of this study, well, you'll find that link in today's show notes. Over the last couple of decades, the explosion of disease-modifying therapies has fundamentally transformed what it means to manage MS.

14:14 But managing MS effectively means looking beyond relapse rates and brain lesions to address the whole person, including those underlying health conditions that directly impact an individual's long-term survival. A major new study published in the journal Neurology analyzed more than 42,000 U.S. death certificates from 2012 to 2023, where multiple sclerosis was listed as the underlying cause of death. So let's take a moment to clarify what that means. Just like HIV or AIDS, no one dies from MS. However, people do pass away from other health conditions due to having MS, and in those cases, MS is considered the underlying cause of death.

15:02 Led by Dr. Liliana Amesqua from the Keck School of Medicine of USC, alongside collaborators from the University of Kentucky and the University of Virginia, this research provides a sober, necessary look at mortality trends, racial disparities, and the growing importance of cardiovascular health in MS. Analyzing 42,205 records from a CDC database, the research team found that even when adjusting for age groups, MS-related death rates increased over the 12-year period that was analyzed. And as Dr. Amesco has noted, while we might expect treatment advances to flatten these trends, the persistence of rising death rates shows there's still critical work to do, especially around co-occurring illnesses called comorbidities.

15:53 This analysis also showed black individuals had the highest MS-related death rates, followed by white individuals. Black patients with MS died younger, with mortality rates peaking between the ages of 65 and 74. For white patients, death rates peaked a decade later, between the ages of 75 and 84. And in the Hispanic MS population, death rates rose among female patients between the ages of 45 and 84. The highest mortality rates were concentrated in northern and midwestern states, including Wyoming, Oregon, Utah, Nebraska, Kansas, Minnesota, Michigan, New Hampshire, and Maine, pointing to potential differences in demographics, healthcare access, and regional prevalence of MS.

16:43 Perhaps the most actionable finding in this entire paper is the role of co-occurring conditions, particularly cardiovascular health. MS-related deaths involving hypertension increased between 2019 and 2023 among both white and black patients, and deaths involving cardiac arrest also rose between 2019 and 2022, impacting black patients most heavily. High blood pressure and vascular disease don't just damage the heart. They cause microvascular brain changes that can accelerate neurodegeneration. Further complicating things, cardiovascular damage can mimic MS lesions on an MRI scan, contributing to diagnostic delays, especially when previous research shows patients from racial and ethnic minority groups can already wait up to a decade longer for an accurate MS diagnosis.

17:40 The major takeaway from this research is that MS care can't exist in a silo. High blood pressure, cholesterol, and cardiac risk factors are treatable and often preventable. And managing your cardiovascular health with your primary care provider is just as vital to protecting your brain and extending your life as choosing the right disease-modifying therapy with your neurologist. Now, it's worth noting that because it relied on death certificates, researchers couldn't track specific MS treatments, disease severity, or healthcare access directly. And COVID-19 likely influenced the mortality rates in the later years of the study.

18:22 But the broad takeaway remains clear. Neurological health really means whole body health. Now, if you'd like to review the details of this study, you'll find that link in today's show notes. And while we're on the uncomfortable subject of life and death, consider this scenario for a moment. You've been diagnosed with stage 4 colon cancer and given a 15% chance of survival. While you and your spouse are trying to wrap your heads around that, your spouse is diagnosed with MS. And because your spouse is a male, it's likely that his disease trajectory could be difficult. That's the situation Kathleen and Rick Silva found themselves in.

19:04 And in a moment, my guest Kathleen Silva will walk us through what that time was like, how she and Rick each took on the roles of patient and care partners simultaneously, and what it was that kept them both emotionally afloat. Imagine your significant other or spouse has been diagnosed with MS shortly after you've been diagnosed with stage 4 colon cancer. All of a sudden, your role as a care partner just got very complicated. That's exactly the scenario my guest Kathleen Silva faced. Welcome to the podcast, Kathleen. Well, thank you, Jon. I'm excited to be here.

19:46 Your husband, Rick, was the spouse in question here who was diagnosed with MS, And when you and Rick received these diagnoses so close together, the traditional roles of patient and caregiver, well, they were completely rewritten for both of you. In those early days, how did you even begin to parse out who needed what and when? Well, that was not real hard because Rick's at that point was more emotional, emotionally devastating. Mine was physically devastating. So initially, I took the care. And it could have been a blessing for Rick because it took him out of and it stopped him from getting depressed. It stopped him from worrying about himself because he was worried so much for me because I was only given a 15% chance of living.

20:39 And so he just focused right in on me and kind of put his problems a little bit aside. Stage 4 colon cancer treatment is incredibly demanding on its own. How did you balance the physical toll of your own treatments with the emotional energy required to support Rick through his diagnosis? He, to his credit, kept it very in the back. He focused it all on me. And he went to every single appointment, every single chemo treatment, every single thing.

21:19 I popped off after I still had my PICC line in. I had a colostomy bag. And I knew I was dying. So I said, we have to go camping. And so having some MS problems. And I called my daughter. she was coming in from Hawaii, and I said, Courtney, when you come, we've got to go camping. I want to go camping one more time before I die. So Rick said, sucked it up. We went camping in a tent that was supposed to be a big tent, but it ended up being a pup tent. And Rick slept outside in the car to make my dream come true. And it was my daughter had just found out she was pregnant.

22:03 I was convinced, well, not convinced, but I was very aware of what my problems were. And then Rick having MS and my daughter's mother-in-law and all in this little tent. And it's kind of like, you know, he just gave it all up for that so I could live and be happy. So he's an amazing man. Amazing. All the demands of caregiving, what I'll call the clinical side, those are one thing. But there's also a whole administrative burden too. There are appointments, there's insurance, there's medications and prescriptions. How did the two of you manage the logistics of navigating two complex chronic illnesses virtually at the same time?

22:52 That's the one thing I thought, wow, when you get cancer, it's a time commitment. Every day, you're either going to get blood drawn, you're going to go to the chemo, you're going to, every single day, every single day, there's something. And Rick at that point was still driving And he was still good And he just did it And he didn't have any His physical demands weren't as strong as they are now And I think he just held it together because I needed it. And you just do it every day. You just do a little step, step by step. You take baby steps every day. And my doctor one time said, because I wanted to know, oh, you know about this and that. And which medication should I be taking? What should I be eating differently?

23:40 And Rick's going, can I look anything up on the internet? Can I do whatever it takes to get Kathleen well? And the doctor looked at me and he said, Kathleen, slow down. He said, you need to take things one day at a time. Don't look at tomorrow and just take it step by step. And he told Rick, don't look at what's happening to Kathleen on the computer. And I think because he wanted us to have total trust in my care team. And that's transferred over to Rick and his care team because you hear so much about so many different things. You know, is it diet? Should you change your diet? Should you do this? There's supplements out there that you should take this you should take that you know this works this doesn't work and because of having to focus first on me taking a wet step at a time and having total faith in my physicians and my care team we've now been able to go oh okay that works and so for Rick it was we have total faith in our doctor we've he's always been blessed well his first care team didn't get it right but you just keep going till you find the right one then you put your trust in them and you do it one by one and it it takes it was a journey to find the right ones the right care team Ms and cancer are both unpredictable but in very different ways did that shared yet entirely different experience of facing a serious illness change the way you and rick communicated with each other.

25:12 Yes and no, because we've always been, I married my best friend when right out of high school, I was the cheerleader who was a football player. And we've raised such a good family. And we've always been so communicative between the two of us, that it was just like a natural morphing into, you know, you need it first. I've got your back. Now I've got your back. And just the constant giving and taking for each other. It's just a daily struggle. Well, this may be the perfect follow-on to what you just said. I'm curious, and you know, in a caregiving relationship, it's easy for the illness to become a third partner in the marriage.

25:57 How did you two protect your identity as husband and wife separate from being patients and caregivers? Well, when we moved to Tennessee from California, and I took a job, a part-time job, at our local museum. And it is such a fun job. I work with kids all the time. I'm the associate education department, and I work with kids. And so it's just fun. And so me, I always have something going and I'm hustling all the time and it's fun. Rick has, he has a Peloton. He rides every single day faithfully. He exercises every single day faithfully. It takes what it would normally take the normal person 10 minutes to do because Rick has to keep stopping.

26:43 It takes him an hour to do his exercises and he does them every single day. And the reason why he says, because he lost 70 pounds. And he said, because if you ever have to pick me up the floor, Kathleen, I don't want you breaking your back. So he's wrapped up in that. And we do have the most adorable little Yorkie dog that, you know, she's just everybody's best friend. And that kind of separates, you know, and Rick has a garden. He goes outside every day and he gardens. And he can't do the yard work anymore. But we put in raised bed planters so that he can actually garden. We both read, enjoy reading. and Rick, his comprehension is shot.

27:24 So he'll have to read the same paragraph about 15 times. And then even then, it's like every time he picks up the book, he's got to remember where he was. So we have kept up separate lives, but we're still married. And we, you know, and I talk to the kids and he'll talk to the kids and we don't have to do everything together. And the other thing that Rick can do is, I used to do all the housework, all the cooking, everything. And since I've got this job, it's forced Rick to go ahead and he'll do some dusting. We've pared down our household so everything is easier to do. And he actually cooks. But for me, I'll get in the kitchen, I'll have dinner on the table, you know, wham, wham.

28:10 And for Rick, he's got to start at 10 in the morning, take a break, do it again. And we've had to, and so, but he's found that he really enjoys doing it if he feels good that day. Well, speaking about feeling good on any particular day, I want you to think back to when your treatment was front and center. Do you remember whether there was a specific moment or you had a realization where you had to explicitly say, hey, I need to step back as a caregiver today, because my body is telling me I need to be the patient? I never have those days, but Rick does. And when he does, it's fine.

28:50 I just, not a problem, Rick. You know, if you don't feel like cooking and dinner's not on the table when I come home, I'll do it. Not a big deal. Nothing is a big deal. Nothing is too big of a deal for either one of us to do for the other. And I just think that's because that's the way we've always been. You know, I think a lot of people know how to show up when one sick person is in a household, but when both partners are facing separate health crises, friends and family can sometimes just get paralyzed. They don't know exactly how to help or what to do. What did effective support look like for you?

29:33 Well, you got to ask for it, right? Because if you don't, you won't get it. And you can't rely on other people being able to read your mind, either for Rick or me or our kids. But our kids have been so phenomenally amazing. They just, I don't know, I guess it's something because we've always lived that way, our family. It's because our families, our parents, both of our parents were married for, you know, 50 some odd years. So we, my parents, well, Rick's parents, not so much because his dad died. But on my side of the family, my parents were married for 52 years. My grandparents were married for 57 years. It's like you see every day what it takes to be there for each other. And...

30:21 We've all come from a very strong church background. And I think that when you ask for help and you give people the opportunity to help you, that they're blessing you the same time you're blessing them because they learned how to take care of someone too. And our kids, I figure because our kids watched me take care of my parents. Now my kids know how to take care of us and that you talk about it you laugh about it we've just been Blessed that way, and I hate to say it was lucky, because there's nothing in this that's lucky.

31:05 You just do what it takes, and that's how we just help each other. When it comes to the people around you who absolutely want to help, is there anything you found that others should probably avoid doing? I have learned that I let Rick do his own, do what he can do. And he knows when he, he's very honest and he'll say, I don't need your help doing that. Or Kathleen, I can't button my buttons up. Could you please button my buttons? And for someone that doesn't know us, just, you know, a phone call, just checking in. You don't even have to mention being said, you know, how are you feeling or anything. Just call. Just how you doing?

31:57 And I guess that's just it. Just be honest with people and hope they be honest back and show that you care through, you know, do you need—I'm going to the grocery store. Do you need anything? Our neighbors are super good. They mow our lawn every once in a while, and they just—and it's because we're nice to them. We're good to them. And they, I don't know, I've never had to actually face that problem. And that's a good thing. Oh, I know. And so many people have lives so much more difficult. It's hard to even say I have a difficult life when you see what other people have to face.

32:41 For a care partner listening to our conversation who feels like they're drowning under the weight of their own health challenges alongside their partners, what's something you wish someone had told you at the very beginning of this journey? There's an end. It might not always be the end you want, but there is an end. And just enjoy the time that you have to the capacity that you have. I mean, because I know that there are times when Rick has been so depressed and he had the trigeminal neuralgia going on where he cried for a year and a half all day long, every day. And there are times where you just, you try a medication and it's not working and you just have to trust your doctors.

33:28 And then, but be an informed truster. We went to all those MS meetings, and we learned about all these kinds Of treatments and therapies, and you were able to talk back and forth with these experts in person, and It is very difficult. I don't want to, sometimes because I do, I am a positive person. It's kind of hard for me to encourage, well, it's not hard for me to encourage other people, but I don't want them to think, oh, you're such a Pollyanna. You're not living in the world because Rick, thanks be to God.

34:09 And thank you to all the medical professionals and who have constantly working on things to make people with MS their lives better. And because of them, Rick is, they've arrested his MS to the point where he walks, but he stumbles all over everywhere. One time we were at a, my daughter's graduation, she was getting her master's degree. And we, Rick was in a suit and I was in a nice dress and the lawn, we were walking across this lawn and it was a little lumpy. It was 10 o'clock in the morning. And I overheard Rick, you know, here's Rick trying his hardest. And this lady, she goes, isn't that disgusting it's 10 o'clock in the morning and he's already drunk it was like what And um you know it's just you have you have these daily things to worry about but thank goodness rick was his medication was able he still panics if there's anything in the floor it's like rick just walk around it.

35:12 But I might step on it, but you might not. And he, you know, wakes up several times a night and you just know that he's in pain and it, you just hold each other's hands. And I don't know. I don't know. Cause every, that's the other crazy thing about MS. Everybody's journey is different. Everybody's journey is different. There's nothing. That's why it's so hard to diagnose. And it's so hard to be a cheerleader sometimes because you didn't know how much, how cheery you should be. All excellent points. And clearly coming from a place where you've lived them, they're not theory.

35:52 Kathleen Silva, I want to thank you for sharing your story. I think hearing it is going to help a lot of people. And thanks so much for, yeah, and thanks so much for talking with me today. Yeah, and if anybody ever needs help, if he's a cheerleader, I'm here. That's going to wrap up this episode of Real Talk MS. Real Talk MS is powered by the National MS Society. And you can share this episode of the podcast by letting your friends or family members know that all they have to do is point their web browser at realtalkms.com slash 468. You'll find that link in today's show notes, so you can easily copy and paste it right into an email or a text. I've always believed that the invisible symptoms of MS are far scarier than the physical symptoms.

36:37 And of all the invisible symptoms, issues related to cognitive function can be particularly frightening. I remember my reaction when I first noticed my wife showing signs of cognitive decline. Now, she was already living with significant physical disabilities, but in spite of those changes, she was still the same person. When she started experiencing cognitive issues, it felt to me like that person I had always known was slowly disappearing. And that's a scary feeling. Today, there are steps you can take and even lifestyle choices you can make that can help manage MS-related cognitive issues. Next week, Dr. Anna Kratz joins me to discuss managing cognitive function when you're living with MS.

37:19 I hope you'll join me for this important conversation. I'm Jon Strum. Thanks for listening. Stay safe and make healthy choices.