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RealTalk MS
Episode 418: The Importance of Developing a Growth Mindset When You're Living With MS with Dr. Mirian Franco
00:35:40
Living with MS means living with uncertainty, possible physical disability or cognitive dysfunction, bouts of crushing fatigue, mood changes, and let's not forget the very real irritation of well-meaning people telling you how healthy you look. Just...
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- [00:01]
A
I'm john strum and this is real talk, mississippi.
- [00:18]
It's September 2nd and we have a lot to talk about. Like everyone else, someone living with Ms. Is going to experience life's everyday ups and downs. Unlike everyone else, they will also experience a constant sense of uncertainty, possible physical disability or cognitive dysfunction, bouts of crushing fatigue, mood changes, and the very real irritation of well meaning people around them telling them how healthy they look. This week we're talking about the best possible way to process the world around you, and that's with a growth mindset. In Today's episode, psychologist Dr. Miriam Franco joins me to discuss how cultivating a growth mindset can make all the difference in how you approach your Ms. Journey. Dr. Franco is a certified Ms. Specialist with advanced certifications in Eye Movement desensitization and Reprocessing, also known as emdr, as well as in guided imagery. But before we get to my conversation with Dr. Franco, the there are a few other things that you should know about.
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In past episodes of this podcast, we've talked about the devastating cuts in congressionally approved funding for medical research that President Trump has unilaterally imposed. He's decided to withhold hundreds of millions of dollars approved for research funded by the National Institutes of Health. And we've also discussed the fact that Congress has defunded the Ms. Research program, the only federal funding specifically for Ms. I know that when we talk about research, some people might picture a sterile laboratory setting full of people walking around in white coats. It's all pretty abstract. Most of us don't find ourselves in that kind of a setting. And so the, the whole conversation about withholding these congressionally approved funds can be pretty abst. Well, all of that stuff that people may have rolled their eyes at and just shrugged their shoulders about and said it's just politics. Well, it's getting less abstract and a lot more real because now it's starting to impact patient care. As someone living in Southern California, I can tell you what that means for people with Ms. And other neurological conditions who are being treated at USC keck Medicine. About three and a half weeks ago, 89 employees were laid off at USC Keck Medicine and the Keck School of Medicine. At usc, a neurologist was laid off and the entire staff responsible for providing psychotherapy to people living with ms, als, and other neurological conditions. Well, they were all told that their jobs were ending. I'm not sure how the folks at USC can even try to say that patient care comes first when they can so easily end therapy for people who are dealing with the kind of depression that so often accompanies a life changing Ms. Or ALS diagnosis. It demonstrates a wrong headed belief that mental health care is somehow less important. When this action is no different than walking into an operating room and stopping surgery in the middle of a procedure, you don't turn the lights out mid treatment. The people at USC who have made this terrible decision are well aware that one in two people diagnosed with Ms. Will at some point experience clinical depression. They know that someone with Ms. Is twice as likely to consider suicide compared to the general population. And armed with these kinds of evidence based insights, they've arrived at a decision that at its best possible, pulls the rug out from under those patients who put their trust and their very well being in the hands of usc. And at its worst, it puts people's lives at risk. What's happening at USC is not an isolated situation, it just happens to be a local situation that I'm familiar with. I know people, healthcare professionals and patients at USC who were personally affected by these layoffs and layoffs like these are taking place at leading academic institutions across our country. Unfortunately, the results will be felt for years to come and for some maybe forever. If you or a loved one is living with Ms. Or any chronic illness, please be sure to take this story into the voting booth with you when you cast your vote in the 2026 congressional election.
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Last week the United Arab Emir Emeritus became the first country in the world to approve Tolebrutinib for treating adults with non relapsing secondary progressive Ms. And before you start to wonder why we need another disease modifying therapy, you may want to pay attention because tolebrutinib represents a new category of disease modifying therapies called BTK inhibitors. The BTK stands for Brutons Tyrosine Kinase, which is a very long name for a protein that plays an important role in the development of B cells. A BTK inhibitor blocks the activity of this protein and one thing that makes tolebrutinib particularly important is that it can cross the blood brain barrier so it can target B cells in the central nervous system, making tolebrutinib the first and only brain penetrant. BTK inhibitor to treat non relapsing secondary progressive Ms. And slow disability progression independent of relapse activity. Now some approved DMTs have been shown to delay progression following a relapse, but Tolebrutinib is the only DMT that's been shown to delay disability progression independent of relapse activity and progression independent of relapse activity, often referred to by the acronym pira, is something that we've heard a lot about over the past 24 months. It refers to the worsening of Ms. Symptoms and disability that occurs even when someone isn't experiencing active inflammation or new lesions in the brain. And because this progression occurs in the absence of active inflammation or new lesions, doctors can only acknowledge it retrospectively after it's already occurred. So this should help you understand why people are pretty excited about tolebrutinib. The phase 3 clinical trial for tolebrutinib enrolled just over 1100 adults with non relapsing secondary progressive MS, and results from that trial showed that about 2 1/2 years of treatment with tolebrutinib led to a 31% lower risk of disability progression compared with the placebo. A phase 3 clinical trial for tolebrutinib that enrolled over 1800 adults with relapsing forms of Ms. Showed that while tolebrutinib did not outperform Obagio at reducing relapse rates, it also showed that treatment with tolebrutinib led to a 29% reduced risk of disability worsening. EMA approval of tolebrutinib in Europe is pending, and in the United States, FDA approval of tolebrutinib is also currently pending, with a decision expected on or before September 28th. In the meantime, if you'd like to listen to my interviews with Dr. Robert Fox, principal investigator in the phase three clinical trial for tolebrutinib and secondary progressive MS, or Dr. Jiwon oh, the principal investigator in the phase three trial for tolebrutinrib and relapsing remitting Ms. You'll find links to both of those conversations in today's show. Notes.
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The International Progressive Ms. Alliance, in conjunction with McGill University in Montreal, Canada, and industry partners Biogen, Novartis, Roche and Sanofi, have launched an Ms. Clinical and imaging data resource that provides the Ms. Research community access to anonymized data collected during pharmaceutical industry clinical trials. It includes approximately 72,000 MRI scans as well as data from 200,000 clinical visits from more than 13,500 people with Ms. This resource is a perfect example of how the International Progressive Ms. Alliance brings the world together to collaboratively solve the riddle of progressive Ms. The resource is being made available to the global Ms. Research community to help accelerate the understanding of Ms. Progression and speed up clinical trials aimed at finding solutions for progressive Ms. The alliance has convened a data Access Review Committee, including a person living with progressive ms, to evaluate all applications and ensure that proposals support research that is within scope and of benefit to the Ms. Community. This data resource has an estimated total value of more than $800,000, and applications to access the data will open this fall. If you'd like to learn more about the Ms. Clinical Imaging and Data Resource, including data access guidelines, you'll find that link in today's show Notes.
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I want to remind you that we're just a week away from the third third Annual Ms. Stand Up Comedy Benefit taking place on Monday, September 8th at the Gotham Comedy Club in Manhattan. This year's event will be headlined by comedian Tom Papa, who some of you may already know from his Netflix comedy special. Proceeds from the evening support groundbreaking research that's underway at Weill Cornell Medical College, where Dr. Yinghua Ma is leading a team investigating a common gut bacterium which they suspect may trigger Ms. If you're interested in learning more or you're ready to buy your ticket, you can visit msstandup.org and you'll find that link in today's show. Notes.
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Your voice and your opinion matter, and including the patient Voice in the FDA's regulatory review process for new medications is an important aspect of the 21st Century Cures act, which was passed by Congress and signed into law by President Obama in 2016. The overall aim of this law is to accelerate discovery, development and delivery of new medical treatments and mandating patient focused drug development Meetings with the FDA is the part of the law that formally requires that patient experiences and perspectives are integrated into the drug development and regulation regulatory review process. The National Ms. Society is leading the Shaping Tomorrow Together initiative that culminates in an interactive patient focused drug development meeting with the FDA that will be held in person, by invitation in College Park, Maryland and also streamed live on Zoom. This meeting will ultimately lead to the publication of a Voice of the patient report in 2026, but I'm getting a little ahead of myself here. This process begins by having as many people affected by Ms. As possible share their experiences by taking the Shaping Tomorrow Together survey. This is an online survey that should take you about 45 minutes to complete, and once you've completed the survey, you can enter to win one of ten $50Amazon gift cards. And I'll add that by completing the survey, you'll be adding your voice and your experiences as someone affected by Ms. To all the other information the FDA will ultimately receive. You'll find a link to the survey in today's show Notes and I am inviting each of you to click on that link, complete the survey and help the FDA better understand the things that are most important to people who are affected by Ms. Once you've completed the survey, you should register to join the National Ms. Society on October 29, when the Ms. Society will live stream the Shaping Tomorrow Together meeting. This meeting will be an opportunity for the Ms. Community to share their lived experiences with the FDA staff in charge of regulating drugs, people working at life science companies, healthcare professionals and Ms. Researchers. During the meeting, the Ms. Society will share the initial survey results and dive deeper into what it means to live with ms, including hearing from you about the daily impacts of ms, how you manage and treat your ms, and what matters most to you about current and new therapies. This is really a once in a lifetime chance for the Ms. Community to come together to make a difference in future Ms. Treatments. I hope you'll complete the survey and then register to join the National Ms. Society live from your home OR office on October 29th. You'll find both the survey and the zoom registration links in today's show Notes While we're talking about the daily impacts of ms, how you manage your ms, and what matters most to you about living with ms, it seems like the perfect time to point out that our mindset provides us with the lens we use to evaluate all of these things, and developing a growth mindset can be your best strategy to living your best life with Ms. My guest Miriam Franco joins us in a moment to share some strategies for how you can go about developing your growth mindset.
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In the book the Art of War, Sun Tzu wrote, every battle is won before it's ever fought. I always interpreted that iconic line to be about the importance of mindset. And when it comes to managing your ms, your mindset is one of the most powerful tools at your disposal. Joining me to discuss how cultivating a growth mindset can make all the difference in how you approach your Ms. Journey is Dr. Miriam Franco. Dr. Franco is a psychologist with advanced certifications in Eye Movement Desensitization and Reprocessing, also known as EMDR, as well as in guided imagery, and Dr. Franco is a Certified Ms. Specialist. Welcome to the podcast, Dr. Franco.
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B
Thank you for that introduction, John, and it's a pleasure to be here.
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A
So I'm hoping you'll start us off by explaining what a growth mindset is and how it differs from a fixed mindset.
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B
Certainly. Well, as our audience knows all too well, you don't simply adjust to Ms. And then you're done all of us have fixed mindsets, and they serve us well at certain times. We all grew up in families where we had to learn survival strategies. And then because they're well learned, we tend, like an old habit, to reproduce them with other people, even though they're not our original family. And often this leads to conflict and the need for change. A fixed mindset could be helpful for a single isolated health challenge, like preparing for a major surgery. Maybe you want to learn one skill set to lower your jitters about having the surgery, but once the surgery is done, you put it behind you and you move on. A fixed mindset is something that we all have because we become attached to ways we do things. Consciously or unconsciously, there are things we've learned before that got us by, that got us through, and we tend to keep using the same damn step. But coping with Ms. Ms. Is a lifelong condition. And ms, like adult life, is full of constant changes, which means losses and gains. It's just that in ms, sometimes you have a rapid series of changes or a major change that's unwelcomed, forces you to adapt. And you may not, after adapting, return to a former level of functioning, and this is very challenging. So Ms. Coping well with ms, like life, requires understanding that life is complex and has ambiguity and that you may need multiple dance steps. Coping and living well with MS, therefore requires a growthful mindset. And I like to think of this as a type of attitude or orientation towards coping and interacting with what is happening to you now in the present and how you may need to adapt, even if that's taking one small step at a time. It's a process. It embraces curiosity and flexibility. A fixed mindset would require a person to refer back to some stability, some consistency, keeping things the same after going through something. But there's an old saying, I believe it's a Buddhist saying, that if you hold onto something too tightly, you stop interacting with it. A growthful mindset is internalized over time. Sometimes it seems like people already get it, but maybe they had earlier challenges in life, so they've learned to value this way of being.
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It becomes a way you take yourself through something, a process where you've learned how to interact with life's ups and downs. Sometimes even when you just have to hold with the great while the uncertainty before you can know more. It may seem ironic and counterintuitive, but psychologists have studied quality of life, and disease severity is a weak predictor of quality of life. In fact, it is psychological factors that are most important and better Predictors of individual adjustment. So examples of a growthful mindset with Ms. Would be allowing yourself to react and mourn to a loss, a return of a former symptom, a sudden bout of fatigue that might last for days, maybe even weeks. But after reacting at some point, you shift to responding. Over time, you accept the irony that an unwelcome forced change, you're forced to adjust. Once you do, often what occurs is heightened, meaning that you couldn't anticipate a new way of using yourself or a different part of yourself or your brain or your body, or deepened relationships. And you continue to make meaning in life. So people who are very anxious or tend to rely on controlling things, they can't fathom things unless there's certainty, struggle with this. So what they need there is two things. We all need this, they just need it more. So you need social support. You need a positive environment to grow and thrive. At the same time, you need help learning how to shift internal reactions so that you interact with your environment differently. And this creates self efficacy and it allows for change and new experiences.
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A
Tell me about the benefits of having a growth mindset when you're living with.
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B
Ms. A growth mindset is self empowering. It means you can continue to have meaning, participate in life, develop new skills, surprise yourself that you didn't have. It may allow you to have problem solving that actually eases stress in a certain situation. It involves emotionally focused strategies that reduce distress when necessary. And it provides a soil to keep growing and learning and reconnecting.
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A
Some people may think that having a growth mindset means always staying positive. What's the difference between a growth mindset and toxic positivity?
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B
Well, any all or nothing belief tends to curb growth and it tends to be non adaptive. So always being negative or always being positive is problematic. Most things sort of coexist somewhere in the great middle. Also, always being positive or being grateful too quickly before you've actually mourned something can be a way to avoid identifying and experiencing feeling states of distress or negative reactions. To uphold good coping and mental health in general, not just with ms, one has to be able to have two capacities. You have to be able to see what's vulnerable. Dark life.
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Consists of suffering and pain. You have to have a realistic ability to recognize these negative aspects of reality at the same time, maybe not in the same breath. You have to have the capacity to live with illusion. You have to have a belief that change is possible, even if it's small steps. You have to believe that you don't know the future. Because how you feel about the future changes when the present changes. And you have to believe that change is possible and that people are resilient.
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A
So how can someone go about cultivating a growth mindset?
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B
Would you like an example with Ms. Or more in general?
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A
Why not one with ms?
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B
Okay. I like to teach this with clients with Ms. I work with around fatigue. And because fatigue is the most common symptom that everybody with Ms. Shares, clients have referred to fatigue as a bone wearying process.
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If you're lucky, it comes at 2:30 every afternoon and it's predictable. Though it's unpleasant, you may be able to plan around it and it may go and calm more easily. But for most, fatigue comes in like a weather front. It's about a fatigue. You never know how long it will last, how long before it dissipates. And it can be absolutely overwhelming because it pulls you out of your life. And people hate taking rest periods. So I allow my clients to hate taking rest periods. But I do educate them about fatigue. Fatigue is your central nervous system. I reframe it. It's your central nervous system calling out for rest. It's like a hunger pang. You must eat and if you don't respond, you're going to have major problems. So when you must take a rest period, one of the things I like to do is teach people simple yet powerful mind body techniques that anyone can learn even with cognitive challenges, because your senses stay intact. And I teach them how to take a couple of slow exhales, bring on the relaxation response. And then I teach them how to be more in their right brain and use sensory images. I might start out with something small, like an exercise of imagining yourself in your idle place of relaxation. You may imagine yourself at the beach even though you're not there and you're taking in with your senses. The seagulls chirping, the warm rays of the sun on your back, the beautiful vista where the ocean and the sky meets. At that moment you're in a dual state of consciousness. One parts of you know so you're not at the beach, another part of you in a relaxed state. With sensory imaging, your body takes in perception through the senses and your body starts treating it as if you're there. This is a wonderful imaginative healing process because in two states of consciousness, healing occurs. You interrupt the automatic pilot of worrying and reacting and you're busy experiencing the new experience with your senses and in your body so you can learn more elaborate exercises. You can lower reactivity, muscle tension, restore and renew energy, temporarily shift pain experience.
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You can expand blood flow and you can have fun and be deeply, deeply relaxed. So you're pairing your own relaxation response with something that pulls you away from your life. This is extremely self empowering. It's something you can practice all the time and enhance and grow and develop. And it's a way you can make more powerful shifts in experience and perception. It's not being in your left brain where you're worried about what does this mean? What's going to happen next? Why is it happening to me? When is it going to stop? Will I ever all that negativistic future oriented thinking or over anticipation. You're simply having the experience so as you lower reactivity you can go back and interact with something differently and learn things naturally. You'll learn to turn on your own natural pharmacy and enjoy another part of your brain.
- [27:59]
A
You know, there are so many external influences that shape who we are and how we process the world around us. Our culture, upbringing, even our community can all be potential obstacles to cultivating a growth mindset. How does someone go about overcoming these foundational influences that often feel like they're baked right into our DNA?
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B
Yes, though they feel baked, they are subject to change. All of us grow up in families. It's our primary social group and we learn all kinds of conscious and not so conscious beliefs about healthcare. Positive and negative and healthy and not so healthy coping lifestyle habits. So it is possible to change them. We do it all the time.
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Environments that allow one to practice and make mistakes encourage a growthful mindset. Families or friends that are fretful and fearful and overprotective are not typically encouraging a growthful mindset. They want things to stay the same and always be safe. Safety is important to a point, but you must have dynamism and change also to live well. Support Groups Ms. Support groups are natural incubators for growing a growthful mindset. They supplied support, they exchange resources, they network, they encourage practice. They're safe environments to make mistakes. In their environments where you make new meaning, you make new connections, you're understood, there's compassion and there's also striving to continue to grow and adapt. So these are wonderful environments for encouraging the development of a growthful mindset.
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A
Care partners can often see when their care recipient is losing motivation, slipping into that fixed mindset. Are there steps they can take to help get their care recipient on a more positive footing?
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B
Yes. What's typical in this situation is people don't like to feel helplessness in their partners and it makes them tend to React with more advice, giving more reason and more rationality. However, when people are deeply frustrated, when they feel temporarily stuck, when they're feeling fearful, when what they're going through is maybe a bit of a trauma, they don't feel safe. They don't feel safe or safe to be different parts of who they are. So you cannot use reason, advice, rationality, well intentioned perspective until you lower reactivity. And the best way to do that is not to use intellectual cognitive techniques, but to help people slow their breathing. Ask them, what do you need right now? What's one thing you can do right now to feel safer? Well, I need to sit down, I need to slow my breath. Okay, let's do that first. What's happening now? What do you need next? Well, my heart's still racing. Okay, why don't I sit here with you maybe for 20 minutes. I'll sit across from you and we'll look at each other and not talk and we'll match our exhales together and just do that for 20 minutes. It's an amazing empathic experience and it helps the person feel held with. Instead of trying to get rid of something, you're helping them just bear and contain something. You create the message. I don't know how we're going to do it yet, but somehow we're in it together and we'll find a way. Lower reactivity. Lower reactivity in the body allows emotions to be less dysregulated and then new learning can occur.
- [32:16]
A
Are there resources or programs that can help someone affected by Ms. Cultivate a growth mindset?
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B
Yes, there are many. If you want to cultivate a growthful mindset in general, you can go to the Internet. Carol Dweck, D W E C K is a professor at Stanford who coined the phrase growthful mindset and did the preliminary research on it. She has workshops for the public. There are also master classes in cultivating a growthful mindset on the Internet. There are many major Ms. Organizations. The National Ms. Society has articles on this. The MSAA I've written articles in the past and coping with the emotional Challenges of Ms. On my MSAA app. They have articles on this. Can Do Ms. Has lots of articles on this Can Do Ms. Actually has on site and online workshops for couples where one has Ms. The Ms. Foundation has online support groups. The National Ms. Society and the Emmas foundation both have live support groups. And then there are also therapists. Therapists. Good therapy. Cultivate a growthful mindset. If you want to use more somatic right brain techniques like EMDR Guided Imagery Hypnosis. You can go to the Emdria EMDRIA website and find a therapist. Lots of ways to do this.
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A
Well, Dr. Miriam Franco, I want to thank you for all you do to improve the quality of life for people living with Ms. And thanks so much for talking with me today.
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B
Oh, thank you.
- [34:05]
A
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@realtalkms.com 418. 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. Integrative medicine provides a holistic and patient centered approach to health and well being by integrating evidence based therapies from conventional and complementary medicine in a coordinated way. You can think of it as whole person care. And next week, Dr. Lynn Shinto is joining me to explain what integrative medicine is and how to use complementary treatments as part of your Ms. Care. I hope you're planning to join me for that conversation. I'm John Strum. Thanks for listening. Stay safe and make healthy choices.
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Sam.