On this week's episode of the Brain & Life Podcast, hosts Dr. Daniel Correa and Dr. Katy Peters answer questions they received at the American Academy of Neurology’s Annual Meeting in Chicago last week! They explain how podcast topics are chosen, guest stories that have stuck with them, how they handle discussing ever-evolving science, and more.
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Mentioned Episodes of the Brain & Life Podcast
- Matt and Kanlaya Cauli on Rebuilding Life After Stroke
- We Are Brave Together with Jessica Patay
- Strength on Stage: Actor Michael Patrick’s Motor Neuron Disease Journey
- Comedy and Courage: Comedian Richard Lewis on Living with Parkinson’s Disease
- Parenting and Writing While Disabled with Jessica Slice
- Lauren Miller Rogen on Facing a Parent’s Early-Onset Alzheimer’s Diagnosis
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Episode Transcript
Dr. Correa:
From the American Academy of Neurology, I'm Dr. Daniel Correa.
Dr. Peters:
And I am Dr. Katy Peters, and this is the Brain & Life podcast.
Dr. Correa:
Welcome back to the Brain & Life podcast. We are just getting settled. Not only is it a Monday, but we just got back from the American Academy of Neurology's annual meeting, a big conference of a bunch of nerdy neurologists showing up together in one place to talk about education and the newest science.
Katy, how was your meeting in Chicago?
Dr. Peters:
Oh, it was great. It was great to see you there, Daniel. It was a highlight doing the live podcast, and so it's nice to see everyone, but also hear about all the advances. There's so much going on in gene therapy. For one thing, two of my fellows gave platform presentations, so I was really happy to attend that for them. It was a really good meeting, and it was really nice to see the whole Brain & Life crew.
Dr. Correa:
Yeah, it was great to see a lot of positivity about the advances in neurologic healthcare, a lot of research that's going on to push things even further, to provide more people with better management tools and even cures. And just to balance out a lot of the other stressors that are going on in the world, a lot of people really dedicated both to science and to improving health for our communities.
As you mentioned, we did record a live podcast there. We are finishing up the edits and preparation for that, so we'll hope to be bringing that to you soon, and we'll give you more information about that once it's ready. And I hope you all enjoyed listening to the replay of our last year's live podcast that we recorded, interviewing colleagues that are neurologists with either neurotypical traits or even neurologic conditions.
Today, we're going to go through some questions that we've received, both about what we do here on the podcast and in Brain & Life, and then some listener questions that were submitted.
Dr. Peters:
Yeah. There actually were people that came by because we had a brain health hub, essentially where our team is and where we also got to be and tape our podcast. We got questions from people at the annual meeting. And one of the first questions was, how do we decide which stories or conditions deserve a full episode, especially when so many people want to be heard? Well, I think that we're pretty open-minded. What do you think, Daniel? I think we're always willing to learn.
Dr. Correa:
Absolutely. We want to hear a variety of suggestions and possibilities. So bring them to us, submit them, and we take a look. We look for definitely a balance and we think of throughout our calendar. Some of the stories and themes are guided by discussions that we have, not just between Katy and I, but also with the Brain & Life Editorial Board, lots of other doctors and representatives in the community giving us their thoughts on what topics need to be addressed for the public and for the community. Maybe there are awareness months, or sometimes we're collaborating with community partners or organizations like Cure PSP and the Epilepsy Foundation. We've had several that we've worked with on a series of topics or episodes to address an issue or a specific condition.
Dr. Peters:
More common conditions are going to be more discussed. We can actually think of the nuances within those common conditions, whether it's migraine or it's Alzheimer's disease or Parkinson's disease that occur more commonly, but we also like to highlight rare diseases such as Friedreich's ataxia. We've talked about POTS before. We've talked about rare brain tumors, maybe a rare form of epilepsy. I find it very fascinating to really delve into those rare conditions. I feel like I get to have a neurology review every week because you and I are both very subspecialized, but the podcast really touches on so many different disorders within all of neurology. And I think it's key to speak about each of these rare conditions because it can give a chance a platform for those rare scenarios or those rare conditions for patients and care partners and brings it more that advocacy angle that I think is so important.
Dr. Correa:
Yeah. There's a concept throughout the neuroscience and neurology research community that as we learn from one condition, we may be able to improve or learn for others, this idea of if we can cure one condition, we may actually end up having and find tools to cure many others. And similarly, I think the stories, whether it's a rare condition or a common condition of different neurologic conditions, as we learn about how other people find about managing their own health, their quality of life, their brain health, I think it can help us all. That's something we really try to bring towards the topics here. And within each condition, there's not just, oh, understanding what is Friedreich's ataxia, but there's so many other aspects that I think we can relate to about the day-to-day, about different medication challenges or other challenges for a person and or their family and caregivers.
These are all the types of things that we try to think of when we are putting together a series of topics or you may find that we've had several different episodes about types of epilepsy or Parkinson's, but we're also always looking for a new part that we can add to the previous discussion.
Dr. Peters:
And so another question we got, and I thought this was intriguing, was, "Have you ever heard from a listener whose story really stayed with you?" The answer is yes, yes, and yes. I mean, I think one of the great aspects, this is truly one of the great parts of this podcast, and the stories are so varying and inspiring that I think I have a special moment to everyone. I think what it is if we do a podcast and then I didn't think of a certain angle or if I learned something that's sort of unique that I carry through to maybe how I practice as a neurologist and a neuro-oncologist, I find that I was like, "Wow, that really permeated." It wasn't just a memory, but it also permeated into how I now want to think of things and how I frame things.
So I would give a shout-out to Jessica Pate's interview where she really honed in not just about being a caregiver for someone with a neurologic disorder, but how it can affect siblings if siblings are affected and how siblings need support if they have a sibling that has a neurologic condition and how that's a very unique, specific angle to care. And then another Jessica, Jessica Slice, I promise you I like all other names, but these two are Jessicas. Jessica Slice, her comments on disability. The way she said it was like everybody is going to eventually have some kind of disability, even if it's temporary, like you broke a hip and you're recovering, but how she really framed disability that we all are going to have to contend with it in some way. This is why we just need to be very mindful about disability or other abled people.
While you could put a negative spin on that, I actually think that's a quite positive comment because it's like equalizing or in a way you can have empathy because everyone will have that. And of course, I love the term... I learned the term Ikigai and it was also talking about robots. And I feel like now I'm using Ikigai and talking about Alzheimer's, dementia, how that can be helped with robots so many times. So again, didn't want to leave out anybody, so many highlights. I feel like what's great is this has been incorporated. It's Brain & Life incorporated into life.
Dr. Correa:
Yeah. And so many people's and family stories have touched our hearts. I mean, I think very early on, I remember in the podcast over the years being really touched by and keeping in mind the story of Matt and Kanlia Collie and how they shared her family's experience with Kanlia's stroke as a complication from cancer and the rehab and the caregiving needs over the years. And they've continued to really share their story on social media all through the years about raising her son and her own challenges and her husband's challenges on really supporting the family through this time. So that's almost a story that we got to start with and help bring to the community and I've continued to see move forward. But I think you had such a suggestion. It's hard to pick so many across the many others, but I think one of the things that's freshest for me, like many others, I've lost a loved one in my family. And so I'm really deeply touched by those family members and caregivers and care partners who've come and shared with us the story about their loved one, keeping their memory with us.
I know I can think of Lauren Miller Rogan's mother and her experience with Alzheimer's, Tony Bennett's daughters coming and sharing their memory of Tony and his experience over the years. Jeff Golub's wife and sharing his experience with PSP. And I also remember, I mean, the bravery and amazing efforts of Cameron Boice's parents and their advocacy to raise awareness about sudden unexpected death and epilepsy over all the years, including on our podcast, but in so many other places.
And sadly, I also want to remember the guests of our podcast who they themselves have passed. We want to remember Michael Patrick, whose passed from motor neuron disease or an ALS spectrum disorder, and Richard Lewis after his experience with Parkinson's.
Dr. Peters:
The next question we had was... I think it was also, again... All these are interesting questions, but this one is maybe a little bit of controversy. How do you handle topics where science is still evolving or uncertain? Wow, that can be a little tricky. But in truly essence, I feel like the neurology I practiced when I was a resident is really transformed to now... I think we have to be ready for... I would say it's less about uncertainty and more about sort of growth, but when there truly is some kind of uncertainty, I think you need to treat it as part of a message, not a weakness to hide. You want to start with what are the solid facts and state those points where the evidence is strong and consistent across different things. You want to also message it as...
Sometimes we try not to be too overly jargony and scientific here, and it isn't that we don't think our audience would appreciate it's just that we want to speak for everyone and we want to use clear language and avoid sort of hedging on well-established facts. So I would state the facts, ma'am, and then come with maybe what that uncertainty is and name that directly. Say, "It's okay that we still don't know something." And why it's debated? Why are we even debating this topic? Why it is unknown? Sometimes it's because we haven't done the right studies yet, or sometimes it's a newly discovered phenomenology, or the sample size is just a rare situation, so we don't really know what it means yet. I think this comes up a lot with even with my patients is that sometimes it's uncertainty about prognosis or what's going to happen because the follow-up is just so short.
Next is, and I think this is what we try to do, particularly when we're reviewing articles, or if you ask us questions, is to grade the evidence, like what's out there? Was it a randomized trial versus one that was just a observation? Or I think a lot of times patients will come to me and be like, "I heard about this cure for this kind of brain cancer." And I'll look it up and I was like, "Oh, that's been used in mice only or in a Petri dish." So what is the evidence and where is it coming from? Is it something that's preclinical versus it's an observation that's been seen in humans? I also think you want to think about what would change your opinion on something or what would make you less uncertain. And that's why we need to continue to learn to go to meetings like the AAN to say, "This is the data we need. These are the larger trials."
I don't know, Daniel, what do you think? How do we handle these evolving...
Dr. Correa:
I mean, I think those are great guidelines for just discussing anything that we think is evolving as in data or with uncertainty and really being understanding also of other people's perspective. But particularly here within science, we have to go back to, okay, we only know what we know so far, what has been studied, what data has been collected. Everything else, we may have had further observations that we will interpret where things are and we have to take a look, always looking forward. And here, within the podcast and within the other podcasts through the AN for more the professional scientific audience, we're often reviewing and focusing, okay, here's new data, this is how it changes the understanding of what was studied from that research or from that data, and here's how it might change or impact what we're going to be doing in the future.
Within this podcast, we try to bring it to you a little bit more to the practicalities of the day and in the home and within your family. And so that's where we try to keep it. Sometimes we'll have conversation about things that are suggested or been observed, but we don't necessarily yet have a whole lot of other information, but we focus in on the ones that we know that there's really unlikely any evidence that's going to hurt us. And so that's where sometimes we might stress and we come back to some of the brain health recommendations that we know are positive and we're seeing that, but do we know that across every single individual condition and have they been studied that way? Not necessarily. Some of them we know more broadly within the community or more in specific conditions that we know impact the brain. And so if we can prevent things like stroke and the vascular changes that occur to the brain, we might also be helping reduce or prevent the impacts of so many other neurologic conditions.
Dr. Peters:
Daniel, I think we have one more question that came up at the AN, sort of along the lines of what our... I'm going to give a teaser to what our live podcast was about, but it was, if someone is listening as a neurologist or advocate, how can they support or contribute to better brain health communication? Oh, wow. I mean, I think definitely you need to get out there. There's so many different patient advocacy groups that would probably definitely appreciate your volunteerism. I think if you want to better your brain health communication, become part of that conversation. I'm now wearing my brain health for all pull on my badge that I got from the AN. Thank you very much, Andrea, for giving it to me. I appreciate it. But again, be aware, but start talking about it.
Dr. Correa:
Yeah. I think start talking about it, share the resources that you see. Would be very helpful to people in your community and in your families. Often, I try to think of and tell people, let's conceive of your niece and nephew, your grandma in the room, your auntie and uncle, and let's make sure we're trying to explain things very clearly to them. And if there are resources or community organizations that you think could be helpful to those, they're probably helpful to many other people in your community. So if you want to start even local, take a look at the patient advocacy or community health organizations there in your local area.
If you're a neurologist, then maybe you can offer an opportunity to talk about prevention and/or first aid or quality of life issues specific to a condition. Maybe it's reviewing some of the information that there is about seizure first aid and seizure action plans or prevention of stroke, responding to stroke. So many of our community members need to know and learn about this information. And as you get more comfortable with the broader information around brain health and around various different conditions, maybe those are events or activities you can work to together with your patient advocacy organization.
If you are an advocate in the community, then I really recommend you connect with local chapters of national organizations or local organizations within different medical conditions and help them, give them feedback, point out that more information that's needed on their websites, good examples that are out there. Often, those community organizations and patient advocacy organizations are creating some of the most understandable content that really speaks to those individual communities. And please share with other community members the Brain & Life content and website and our podcast as a place where they can begin a journey into lots of information across neurologic conditions.
Now, we also mentioned we got some listener questions that we're going to briefly get a chance to talk to and share with you today. We heard recently from Katie in Texas and she asked, "How do you know when a headache is just a headache versus something more concerning? I don't want to convince myself if something's abnormal and waste time and money at doctors, but I also don't want to ignore important signs." Katy, I think that's a really important question. I'm glad you brought that to us.
Dr. Peters:
Hey, and I'll take it on, Katie. She's Katie with an IE. I'm Katy with the Y. But I think this is a really good question. And one of the things that... I always say you should rule out badness, bad scenarios that are something that could be serious. Remember that most headaches are not associated with a "serious illness" or underlying etiology. Usually the most common are tension type or migraines, which can be difficult and challenging, but are not associated with other very severe pathology. And you can often manage these with rest, hydration, and simple medications. That's actually probably the first thing is if you have a headache where you can actually get sort of a usual... It follows a certain pattern. If you're somebody who has a migraine, or if you get relief with sleep or over-the-counter medications, it's probably not one of the more serious subtypes. So you want to watch for a pattern that you sort of recognize, especially if your headaches are triggered by stress or sleep difficulties or certain foods and there's really no change in frequency or intensity over time.
Now, let's talk about some red flags that if you need some prompt evaluation, and this is if you get a sudden, severe, worst headache of your life, please, please, please go to an emergency room or have somebody take you there. This can signal a very serious condition called a subarachnoid hemorrhage. Also, if the headache has new neurologic symptoms, like you have a headache and you now have difficulty speaking, or maybe you're weaker on one side, you have vision loss, you have confusion or difficulty speaking, again, that could be a very serious concern. If you have headache with a fever and neck stiffness, this could be concerns for meningitis, particularly if you know of other people that have been sick.
Then something to think about is our age of when we get a new headache. If you're someone who's over the age of 50 and you start having new headaches that maybe could be accompanied with scalp tenderness or jaw pain, there is a rare condition that needs to be treated quickly called giant cell arterritis, which is really important. Next is if you're somebody who's had a concussion and you're now having headache or headache after some kind of head injury, definitely get checked out.
When we're thinking about headaches associated with brain tumors, which is my neck of the woods, this is usually headaches that are involved when you have severe changes in position or triggered by severe exertion or intimacy or cough, worse when lying down or first thing in the morning. Also, if you're somebody who already has an underlying history of cancer or immunosuppression, those might point to maybe something going on in regards to brain metastases or an infection.
I pretty much said a whole bunch of stuff, but I think what I think is really important is if you are worried, it is okay to get checked out. There are really good headache doctors and there's really good medications. Now, for headaches, I will say that there is some very interesting research going in to, how do we test for sort of non-toxic situations associated with headaches? So I'd say stay tuned because, who knows? It could be presented at the Next American Academy of Neurology with some really cool, interesting technology. But Katie with an IE, thank you for that question.
Dr. Correa:
Yeah. I mean, we want to acknowledge there are a lot of things that are coming forward on this, but what we have now, and I think as you described, when it's very new symptoms, a very new rapid onset or completely different kind of headache than you've had before, those are concerning things. When there is a change in some type of your function, vision, sight, coordination that you've not experienced before that hasn't really been fully evaluated, those are things that would get immediately evaluated. When it's a slow progressing change that you haven't had evaluated, then get that checked out.
Once you have had an evaluation for a type of headache and you know this is my pattern of this headache, and I know that the symptoms that can come with it have not been found to be related to anything else, that's when we don't get as much concerned, or when a headache rapidly improves or is treated by hydration, eating food, a certain type of rest, and you know that pattern, then we're less concerned with those types of headaches. But Katie, really excellent question.
As we mentioned, there's going to be more on the discussion about advocacy and the roles of neurologists working alongside the patients in our community in an upcoming episode that we recorded live at the meeting. So please stay tuned. And we're going to continue to bring to you listener questions and please submit some. You can submit them written and/or recorded and we'll play the audio here if you prefer for that so that we can respond to your questions along with some of these episodes. But we hope you enjoyed this week's episode and we look forward to bringing new more stories with community members and our medical experts.
Thank you again for joining us today on the Brain & Life Podcast. Follow and subscribe to this podcast so you don't miss our weekly episodes. You can also sign up to receive the Brain & Life Magazine for free at brainandlife.org.
Dr. Peters:
Also, for each episode, you can find out how to connect with our team and our guests, along with great resources in our show notes. We love it when we hear your ideas or questions. You can send these in an email to blpodcast@brainandlife.org and leave us a message at 612-928-6206.
Dr. Correa:
You can also find that information in our show notes and you can follow Katy and me and the Brain & Life Magazine on many of your preferred social media channels. We're your hosts, Dr. Daniel Correa, connecting with you from New York City and online @NeuroDoctorCorrea.
Dr. Peters:
And Dr. Katy Peters joining you from Durham, North Carolina, and online @KatyPetersMDPhD.
Dr. Correa:
Most importantly, thank you and all of our community members that trust us with their health and everyone living with neurologic conditions.
Dr. Peters:
We hope together we can take steps to better brain health and each thrive with our own abilities every day.
Dr. Correa:
Before you start the next episode, we would appreciate if you could give us five stars and leave a review. This helps others find the Brain & Life Podcast. See you next week.
