Jessie Owen on Advocacy, Awareness, and Parenting

Episode Transcript

Dr. Correa:
From the American Academy of Neurology, I'm Dr. Daniel Correa.

Dr. Peters:
And I am Dr. Katie Peters and this is the Brain and Life Podcast. Every day I'm amazed by people who face adversity and rise above those challenging situations and circumstances and sometimes a medical diagnosis. Daniel, I'm just really think that resilience is so important and my brain tumor patients and their caregivers are always on the top of my mind about resiliency. And just a shout-out May is Brain Tumor Awareness Month. So I hope you're wearing gray in May. So hashtag gray May. And I want to give a shout-out to my great friend and podcaster, Jenna Fincher. She has a great podcast called Resilient People that focuses on how regular people get through challenging situations when they are resilient. So Daniel, what are some of your examples of resilience that have been maybe you've seen in your life or from interviews even on this podcast?

Dr. Correa:
So before the podcast, I think my first and best interview was my mom. So my mom lives with epilepsy and over the years in her career, she advanced as a communications and marketing director within the American Red Cross. Despite some of the stigma there is about living with seizures and epilepsy, both in the United States and the Latino community and Puerto Rico and the Caribbean, where we're from in many of our cultures, there's a lot of stigma about seizures and epilepsy. And she dealt with a lot of that when she was growing up. Her family was even concerned about her even going to college or leaving the home sometimes. And it was always an inspiration growing up and seeing her excel when others doubted her. I also remember when I was training and my work in the military, a young soldier I met who had suffered a traumatic brain injury from an improvised explosive device.
And he worked so hard both he and his wife throughout his recovery to have that then later interrupted by other problems, bad headaches, seizures, but at each step they kept pushing forward and finding a way to adapt. And while he wasn't able to get back to his previous job, which is what he had always wanted, he was able to redefine his life, his goals, what he wanted and love and partnership with his wife and found an amazing job advocating and supporting others that were reintegrating into their communities after coming home from combat.

Dr. Peters:
And I think we need those kind of stories. Don't you agree? We need stories of resilience to get us to the tough time and to hold up something that you can look at and say, I can also do this. And so resiliency is on top of my mind today because of our guest on our show definitely has it in spades. Her name is Jessie Owen. She's a disability advocate, content creator, and speaker with a focus on accessibility, equity, and innovation in spinal cord injury research. As a quadriplegic mother of twins, she shares candid insights on life parenting and navigating systemic barriers with humor and authenticity.
Hello, Brandon Life podcast audience. I am again, Dr. Katie Peters, your co-host. And today we have Jessie Owen. Jessie Owen is a disability advocate, content creator and speaker with a focus on accessibility, equity, and innovation in spinal cord injury research. As a quadriplegic mother of twins, she shares candid insights on life parenting and navigating systemic barriers with humor and authenticity. And we actually know one of her friends, Jessica Slice, who was also one of our guests. So Jessie, welcome to the Brandon Life podcast.

Jessica Owen:
Thanks for having me.

Dr. Peters:
I gave you a short introduction. We want to hear more. So can you tell us about yourself and where you're joining us from?

Jessica Owen:
Yeah, my little elevator pitch here. So first, I'm Jessie Owen. I live in Seattle, Washington. And why I'm here is because in 2012, a tree fell on my family's car and both my parents died in that accident and I became a quadriplegic. And maybe not everyone's story is as intense or as tragic as something like that, but we all know everyone knows what it's life to have the page turn, the narrative switch, and whatever you thought you were doing, you're not doing that anymore. You got to find a new path. And so now I advocate for spinal cord injury research. I participate in it. I do content creation. It's not all of who I am, but having a spinal cord injury is a big part of who I am. It's how I exist in the world now.

Dr. Peters:
Jessie, Thank you for sharing that, it's just a lot.

Jessica Owen:
Yeah.

Dr. Peters:
I mean, I'm so sorry about your parents and of course your injury. How did you cope in those early days? I mean.

Jessica Owen:
I didn't I had a community. My parents did a really good job of building a village and I was working on building my village. I was 27 and they kept me afloat without a doubt for over four months. I was never alone. I was scared to be alone. I couldn't move. I was scared I was going to choke on my spit or be itchy. And I'm talking about 24 hours a day. People were on the floor of the hospital sleeping with me, taking care of me, bringing meals, helping me find somewhere to live because I lost everything. My independence, my career, my house. I had a little apartment and I couldn't live there anymore. And they all helped me piece things back together. And honestly, for a long time I was not ready to accept the fact that I was paralyzed, that I was a quadriplegic.
I didn't want to be seen as one of them. It's probably a pretty ableist view, but I didn't want to be part of the community because that couldn't possibly be me. Where a lot of my internal healing started was when I did lean into that community and found friends and success and love and cooperation together and solidarity with each other. And it took a long time, but I would say maybe at least five years before I was ready to feel okay in my body even just a little bit.

Dr. Peters:
Well I Just want to say thank you to your village. That's amazing. Those are the sounds of your twin boys, is that right, Jessie?

Jessica Owen:
Those are the sounds of my twin boys hungry and trying to get in the door. And I tell you what, as slightly annoying as that is, that is everything that I didn't think that I could have after my spinal cord injury. In fact, I talked to a therapist in my healing journey because I was like, "I don't know what to do." And we got into it one day and I was like, well, I'm really sad that I can't be a mom. And I was like, "I don't know when that journey was going to happen for me, but I'm really frustrated that it was just taken from me. I didn't do anything. I was riding in a car and it just slipped away from me that dream."
And my therapist was like, "Oh, can you still biologically have children?" I was like, "Well, yeah, my doctors say, yeah, all that still works on the inside in a different system than the one that goes through the spinal cord there." And she was like, "Well, then maybe it still can be on the table for you." And I remember that day because it was a turning page. I was like, maybe I can hope for more. And it was probably three more years until I met my husband after that. But it absolutely changed my perspective and those cries were something that I didn't think was going to be possible for me. And so it's a nice reminder that my life is good.

Dr. Peters:
I love the sound of chaos. I love that. I think that's what life is, right? And being alive and being loud and the ability to do that. And how old are your twins?

Jessica Owen:
I have 2-year-old twin boys. I know I'm tired.

Dr. Peters:
That's amazing.

Jessica Owen:
I've had the luxury of, no one has ever described me as boring. I'm a lot of things out there. Not all of them good, but my life Is not boring.

Dr. Peters:
So how do you balance things like day to day because you're doing your advocacy and your content creation and you're speaking. How do you do that with two twins?

Jessica Owen:
Not always. Well, to be honest, constantly feel like I'm dropping the ball if you want the details of the schedule. Right now, Mondays and Fridays, my husband's and I split care, especially now that the kids are a little bit older, I can do a lot more for them myself. Because they don't need as many diaper changes, which I could do, but we're super hard. So we split the days, Mondays and Fridays, I'll work in the morning and he watches the kids and then in the afternoon he works and I watch the kids. And then Tuesday, Wednesday, Thursday, we have a nanny usually until about 3:30. So that gives me a little bit of time to get some stuff done and then we just do it. You just live in the chaos tornado, you probably drop the ball a few too many times, but that's okay. That's okay. We're all doing our best out here, right?

Dr. Peters:
Oh, absolutely. So tell us about some of the content that you're creating and about that work that you do, I guess while the nanny is helping out.

Jessica Owen:
So I've got a couple different projects right now. I work with ONWARD, which is a company that has designed a spinal cord injury rehabilitation system, transcutaneous stimulation of the spinal cord. So it's two little stickers that go on the back of your neck and it delivers a specialized electrical current. And we have seen vast promising results. In fact, the first meaningful results that we have seen in spinal cord injury recovery for chronic spinal cord injury patients, so about two years after injury, which is so big. So I've been doing a lot of work with them recently. And then in my content creation that just sort of slipped into my hands. I started sharing some of my life because I was like, this is one interesting, and two am very nosy about other people's life. So you got to pay the price. If you're nosy, you got to cough up some of your juicy details too.
And two, when I was first newly injured, I think I would've liked to see some of the how tos. I still like to see some of the how tos of other disabled creators accomplishing things because I'm like, "Oh, that is a great idea. I could do that, or I could modify that and I could get that done that way." And so now I just try to share a little snippets of my life, kind of what it looks like to be a quadriplegic mom with 2-year-old twins and just how I exist through the world. It's not boring. It's not boring.

Dr. Peters:
So I got to speak with Cole and Charisma and they're big content creators in this space and are inter-able couple. And one of the things that we talked about is how much that community for the content creator is so important because you do learn from each other. What have you learned from your... I guess your followers or people that you've engaged with through your content?

Jessica Owen:
I mean, to be honest, I am still learning a lot. I don't know that many people in the creator space yet. I'm like a new baby little creator that slipped into my hands and I'm figuring it all out. But I can tell you the community around me that is so supportive. Occasionally you'll get a couple weird comments, but it is so uplifting to hear people say, "Wow, you're doing a great job." "Wow, I never thought about it that way. Now I'm going to go through the world thinking about things this way." Or just there's a satisfaction of someone knowing someone's first time seeing someone in a wheelchair isn't in a parking lot and they know how to act and not to be overly weird with someone in a wheelchair because they've had a little experience with it online. So all of that has just felt super important. But to be honest, I'd love to lean into the creator community more. I feel like there's secrets out there and I want to know them. As I said, I am quite nosy.

Dr. Peters:
I like that. So you mentioned being out there in a wheelchair. How can all of us be better allies to people that are differently abled?

Jessica Owen:
What we do want to make sure is that the laws that we've put in place already to protect folks with any type of disability, intellectual, physical, maybe emotional protection, also the ones we have in schools for kids are protected because those are going to help us get the resources that we need. So definitely continue to support and advocate for those policies. Because they are meaningful and they work. And it is one of the best things about our country is those ADA laws. I've traveled around the world and not all of them have... Most of them don't have laws of accessibility. They have encouragement of accessibility. Whereas in the U.S. you pretty much know that you can exist in the world even if you're disabled because we're required to.
So that's really cool. I think your advocacy of just knowing, following disabled creators, learning a little bit because one thing about disability is it could happen to you at any time. I know we all hear that. I know. But it could. And sometimes for many of us, we step in and out of disability many times in our life. We break our leg, we sprain an arm, we sprain our ankles, or you get really, really sick and it's really nice to have a world where you can still exist when you are in that moment of disability.

Dr. Peters:
And I spoke with that same concept with your friend Jessica Slice is that all of us at some time in our life in our trajectory will have either different levels of disability or we'll need special attention to ourself. Jessica, can you tell us about your engagement with her?

Jessica Owen:
Yeah, so I know I said I didn't engage a lot in the creator community yet, but that is part of where we met and her advocacy work. And we're just now, I mean I don't want to give all the details, but we're just starting to collaborate a little bit more with her work and I'm so supportive of it and her writing and authorship and I think that is really spectacular of her. She did so much research, she reached out and called so many people, pretty spectacular. I'm a little jealous. I get some lessons from her.

Dr. Peters:
So we all need to learn from each other. I think that's really important. So what do you do day to day to of stay, I guess, on your recovery journey? Because one of the things I learned, you need to continue to move, you need to continue to exercise. What do you do day to day?

Jessica Owen:
Yeah, it's a use it or lose it situation, right? And that's-

Dr. Peters:
That's true.

Jessica Owen:
...for everyone. You use your body or you lose it. So I have something called central spinal cord syndrome, which means basically that my lower body works a little bit better than my upper body. I can walk a little bit, I can stand, I can transfer, I can move my legs and my arms, and I'm still a quadriplegic because all four of my extremities are impaired by paralysis.
Now with that said, I go to the gym twice a week and I stretch my body and I move. And then I also, especially since I've been working with ONWARD more intensely recently, have been doing some more occupational therapy for my fine motor skills at the University of Washington in their transcutaneous spinal cord injury study. Once you get your hit that two year mark of your spinal cord injury roughly right now, that is the function you're going to be living with. And although maybe you can't get a whole lot more without other support. What you have, you can strengthen, you can use, you can improve what you got and rarely in life does hard work ever not pay off. So if you put in a little bit of time, it will be beneficial.

Dr. Peters:
I think that's a good lesson for everybody, and I'm always telling my own patients the worst thing is to get deconditioned. You want to be able to really try to just stay conditioned as best as possible because time is happening, age is happening. I haven't figured out how to stop it yet, but hey, we just have to keep on moving and keep on moving. So if you had to sum up what are your hopes for others with spinal cord injury, what is it going to look like in five years from now? Are we going to have better therapies, better outcomes? What's going to be there?

Jessica Owen:
SO, I guess there's three prongs to that. Maybe we want advocacy and awareness and make sure people understand that there are some treatments out there that there are ways to do this. There's a community out there for you. Obviously I'm a big advocate for the transcutaneous spinal cord injury treatment. Right now it's being rolled out across the U.S. Maybe only 20 clinics or so have it, and it's approved for clinic use so you can go in and get it.
It just was approved in January or February. So it's a slow rollout, but it's coming and it's meaningful. So I want people to know that that is an option out there that they should and could keep a lookout for. As far as my progress, I've made huge gains with this. I want to see how far I can go and I want to see folks that need access to this type of care get it because this shouldn't be out of reach due to costs or insurance or lack of provider knowledge. If you need it and it works, you should have access to it. I know for a fact that you're going to do all those things. So I think you're going to continue to thrive. So I just want to thank you so much for your conversation and thank you also to our audience.
Yeah, thanks for having me and for being here. I love talking about spinal cord injuries and disability because it's such an integral part of our world, but we don't always see it. Sometimes these folks are hidden or don't have access and it could be you. It could be you someday, maybe just for a week, maybe for two weeks, maybe for longer. And if you're lucky, you're going to age and you're also going to have some limiting mobility stuff. So the more you learn about it throughout your life, the better prepared you're going to be for when that moment may or may not happen for you.

Dr. Correa:
Are there questions you have about living with and thriving with one of many neurologic conditions? We're excited to start taking your questions and feedback and sharing those responses here with you on the podcast. You can also email or record an audio message and send it to blpodcast@brainandlife.org and of course, you can also reach Audrey and I on social media or the Brain and Life team, @brainandlifemag.

Dr. Peters:
Once again, we are here Brain and Life podcast audience. And again, we have a wonderful medical expert to talk to us today. As always, I'm your co-host Dr. Katie Peters, and I'm honored to introduce our medical expert, Dr. Shelly Sia Dr. Sia is an attending physician and assistant professor in physical medicine and rehabilitation at Montefiore Einstein Hospital. She's the outpatient director at the spinal cord injury rehab at Burke. And her clinical focus is truly the outpatient care for patients living with spinal cord injury and related disorders. Her approach is a holistic one to helping people regain their quality of life, medical, physical, and functional and emotional quality of life. I just think that's amazing and I'm very excited to have her joining us today. Dr. Sia, welcome to the Brain and Life podcast.

Dr Sia:
Thank you so much, Dr. Peters, and it's truly an honor to be here on the Brain and Life Podcast today. So thank you so much for inviting me to introduce myself a little bit. I'm the director of Outpatient Spinal Cord injury rehab at Rehabilitation Hospital in White Plains, New York, which is a member of the Montefiore Health System, is a 150 bed acute inpatient rehabilitation hospital with a physician's practice in 15 outpatient therapy sites is CARFA-credited and joint Commission-credited, and it's a top R hospital voted by U.S. News and World Report. I serve on the New York State Spinal Cord Injury Research Board on National Committees for Public Policy and Advocacy. Thank you so much again for having me.

Dr. Peters:
That's wonderful. It sounds like just an amazing center and so much you can do for those patients because they just need so much help. And to have you in a place like at Burke Hospital, it sounds like just an amazing opportunity for those patients.

Dr Sia:
Absolutely. Spinal cord injury is less common condition than brain injury or stroke. So I have to say it's so important as a patient living or person living with spinal cord injury to really establish care at an SCI center for the medical care and the therapy care and the network of resources that come with it. So it's truly a privilege to be at Burke Rehab Hospital and working in that system.

Dr. Peters:
So you are a physiatrist, is that correct?

Dr Sia:
Correct.

Dr. Peters:
So first of all, I love saying that term physiatry. It's a great word. We've had psychiatrists, we've had psychologists, and we mostly have neurologists. But can you tell us really, I think our listeners would love to know exactly what is physiatry.

Dr Sia:
That's a great question. Thank you so much for clarifying that because oftentimes when I do say physiatry, some patients think I'm a psychiatrist. So what's beautiful about the field of physiatry, it's that it's really a field focused on quality of life and what's important to the person and function and independence. So when I think about physiatry, the best way for me to explain it is you can think of the term physical medicine and rehabilitation. And when we say physical medicine, it's easier to think of it. Some of its outpatient specialties like musculoskeletal conditions, pain medicine, sports medicine. And then in the rehabilitation aspect, I really think of acute inpatient rehabilitation or outpatient rehabilitation as well. So brain injury, spinal cord injury, amputee. There's also subspecialties like cancer rehab, like women's health rehabilitation, but we're really the specialty focused on the nerves, muscle bones and quality of life and enhancing function and independence.

Dr. Peters:
Well, I want a physiatrist every day in my clinic now, so I see brain to her paper. They definitely deserve to be rehabbed. And sometimes it's hard for people to understand what people's function is at baseline and how they ultimately... You don't want them to become even deconditioned. So a lot of times their goal is to not become deconditioned, but not to become an athlete. So I love the idea about your focus is really those muscles, bones and nerves and keeping those people with a really good quality of life.

Dr Sia:
Absolutely. A really, really gratifying field.

Dr. Peters:
So we're talking about spinal cord injury. Now, when you see a patient with spinal cord injury, at what time do you usually encounter them? It's not when they first have the injury. I assume that it's sometime after they've come out of the hospital, you're in the rehab place, right?

Dr Sia:
Correct. So the physiatrist can be at any point in their care journey, most commonly you're going to encounter a spinal cord injury physiatrist when the patient transitions to acute inpatient rehabilitation. So let's say unfortunately someone gets into a motor vehicle accident and they have paralysis and they're in the acute care hospital to stabilize them. Then afterwards when they're more medically stable, they can transition to rehabilitation. There are different levels of rehabilitation really where patients living with spinal cord injuries should be transferred to, and I want to make this a point for the audience listening, is to advocate for going to acute inpatient rehabilitation. In acute inpatient rehabilitation, you get 15 hours of therapy a week and you'll have an SEI acute inpatient rehabilitation center. You really have access to people who are experienced with treating people with this condition. So in addition to the 15 hours of therapy a week, you also get more physician visits, more experienced nursing than in the subacute rehabilitation center.
And then after acute inpatient rehabilitation, some patients may transition to subacute rehabilitation or outpatient rehab or home therapy. I work in the outpatient rehabilitation center. So after people are discharged from acute inpatient rehab is when I see them in my outpatient clinic. And what I love about that is that I can really become the primary care physician for the person and all their spinal cord injury rehab needs because the spinal cords and signals to the entire body. So most people think of it in terms of weakness or numbness, but it also affects the rest of the organs just like there are nerves going to your arms and your legs, it's going to your heart, your lungs, your bowel bladder, and there are a lot of other secondary conditions. And so I have the opportunity to really partner with them lifelong, and it's so gratifying to see how they progress.
And also one of my passions is community integration. So not just the medical part and of course trying to help people on that aspect, but also getting back to living to their life as well as possible. And so I love to talk about things like returning to sports. And Burke has a thriving adaptive sports program, which I can get into in a little bit if you're interested. Also returning to driving like their accessible bands, their hand controls, left foot pedals, and then returning to school or returning to work. And I've done research in vocational rehab in SCI, and there are so many benefits from improved quality of life to giving a sense of self, feeling like a productive member of society, contributing to their family, a sense of identity. So these are just some of the topics that I discuss with my patients.

Dr. Peters:
Oh my gosh, I have a patient with a spinal cord tumor and I just want to shipper straight to you. And they'd be like, "Please help out. Please help out." Because I do think I completely agree. Getting back to your vocation, and I love that that's part of your research. So what are some of those strategies that you employ to get patients back to do those activities that are so important to them, like working and driving and all those things and all their day-to-day activities?

Dr Sia:
Yeah, that's a great question. I think one of the key things is introducing that idea early on, even in the acute hospitalization phase, in your phase of their journey, just letting them know what is possible after someone's been diagnosed with spinal cord injury or paralysis, sometimes they wonder, what's next for me? Am I going to be in bed? What can I do again? As a side note, for example, some people think that they're not going to be able to have children, but that is certainly possible.
So letting them know early on what is possible and then reminding them of it in the follow-up visits and reminding them that there's more to life and getting back to who they were and also really connecting them to the resources that are out there. So I really like to familiarize myself with the local resources. I know there are state vocational rehab agencies and sometimes I literally will fill out that application paperwork with the patient because there's so much going on in their life, all these appointments, all these therapy schedules, and to sit down and fill out a form sometimes can be a little bit too much.
So even just helping them to take that first step is so important. There are a lot of other organizations out there like United Spinal, the Christopher and Dana Reed Foundation that have peer mentors support groups. They offer some free psychotherapy. Paralysis resource center. I think I could go on and on, but to tie it back, what can I do to help people connect with some of these community integration goals is letting them know that it's possible. And I also really believe in connecting them with a peer mentor who has done it and can explain their journey. Because as much as they hear from me as a healthcare professional, I haven't lived through it myself to speak to it. And it means so much when they can speak to a peer who has done it.

Dr. Peters:
Absolutely. I think one place that they're finding their peers are on the web, on TikTok, Instagram and YouTube. We of course interviewed Jessie Owen, who is a quadriplegic, who's a mother of twins, who's sharing her life out there. Also, we interviewed Cole and Charisma two wonderful influencers. They're an inter-abled couple. He has, I believe, a C6 injury, and I think they just had their journey to have a baby. So there's so much going on. But I think that one of the things that they told me when I interviewed them was they love to give content out there about how they're doing in their lives with disability and being inter-able couple, but also love learning from their listeners so that the whole idea is it's a back and forth. Have you seen the influencers on TikTok or Instagram?

Dr Sia:
Yeah, I've definitely seen some of the influencers, and I think that's one really great thing about social media, that it's creating accessibility and awareness to everyone. And what I love about some of the influencers is that they really show their true honest lives in reality. And so everyone can connect with that person in some way. And Jessie Owen's story is truly such a beautiful, beautiful story.

Dr. Peters:
I agree. It is a beautiful story, and she's, one of my favorite things about her interview is she just had so much positivity and she's very looking towards the future, and that brings me back to our definition of quality of life. It's who you are, who belong to, and then also what you're going to become. And I think that that's what you're doing at Burke is that you're allowing those patients to be who they are, belong to their community, and then also become what is the future for that quality of life? So being, belonging, becoming, those are my favorite things.

Dr Sia:
Oh, I love that. Being, belonging, becoming, I'm going to use that with my patients.

Dr. Peters:
Oh yes, I'm spreading the, being, belonging and becoming. So now what is new and exciting for sort of in your space, what is new and exciting in research for patients with spinal cord injury in the outpatient setting?

Dr Sia:
Oh, gosh. There is so much going on in spinal cord injury rehabilitation research right now, and it's a very exciting time for it. And actually, one of the things I'm most excited about is spinal cord stimulation. So it's what you had interviewed Jesse about, but neuromodulation has been in the research phases for the past two, three decades, and it's so exciting because this year, 2025 on we're brought the ARC-EX to market. So just to backtrack a little bit, we've had electrical stimulation or functional electrical stimulation out in the market for several years, and it's used as a traditional therapy tool that's for the audience to let you know really found in specific SEI rehab centers. So again, you should try and complete rehab in one of those settings. But in traditional electrical stimulation, there are pads that are placed on the muscles of the arms or the legs, and that's the delivering electrical impulses to those muscles to cause a muscle contraction.
So in an analogy, if you think about the brain as the processing unit or control center that's sending the signal down to the arms or the legs or the organs, the spinal cord is like a wire and it may be damaged and may be frayed, so not all those signals are getting through in electrical stimulation, it's able to deliver these electrical impulses to the nerves of let's say the leg directly to the arm directly. And by causing that muscle contraction, it can help with muscle bulk, it can help with function. So imagine a person with complete paraplegia unable to move their legs is able to cycle a stationary bike, and that also helps with circulation, swelling, reduced risk of blood clots, bone density, aerobic activity. Now spinal cord stimulation is out. So what's different about spinal cord stimulation is that these, well, one, there's transcutaneous spinal cord stimulation epidural, so transcutaneous is using a pad that delivers these electrical impulses across the skin, and epidural spinal cord stimulation is an implanted device on the cord itself.
What's really exciting is that this device is being used to amplify the nerve signals that are going through the cord directly rather than through the nerves of the arms or the legs. So there are these dormant nervous system pathways and the electricity is able to excite these neurons to modulate the activation thresholds. So with lesser electrical input, it's still able to create activity when the person is thinking about it. A proposed theory is that it's also helping to grow nerve fibers and reorganize or create neuroplasticity as well. So the ARC-EX is FDA approved spinal cord stimulation device that helps people living with tetraplegia, so paralysis of the arms and their legs improve their upper extremity function and their strength.

Dr. Peters:
That's exciting. How do patients get this? Do they... I guess, work with somebody like you that works with a team of ISU neurosurgeons that would implant the device? Is that how it works?

Dr Sia:
I'm so sorry. Can I clarify one thing I may have said earlier, it was FDA approved and it came to market in 2025, but we're already speaking about it in May of 2025. It's really amazing work. It's only available in hospital systems right now, and even right now they're growing and Burke has meetings with them. We're going to have a demo to see if we want to purchase this device and have it available for our patients. But later this year, I believe what Armored has shared with me is that they are going to see if this can be available for home use and self-purchase as well.

Dr. Peters:
That is so exciting.

Dr Sia:
Incredibly, incredibly exciting. This is what I'm most excited about and SCI rehab right now. I remember even during your fellowship we're like, we're really hoping for transcutaneous spinal cord stimulation to become a clinical tool in the next few years, and little did I know in next few years would only be five years later or so, so it's progressing quickly, which is really great. To tell you a little bit about their research and what they've done is that in their study, they had 60 people living with spinal cord injury with a level of injury from C2 to C8 one year after their injury up to 34 years after injury, which is amazing because at this point you would say someone has a chronic spinal cord injury and maybe plateaued, but they really saw improvements and they were able to enhance these dormant nervous system pathways and 72% of the people showed improvements in strength and function and then some of their secondary outcomes like sensation, quality of life, the ability to pinch or to grasp was also improved. So it's definitely a great technology that's out there right now

Dr. Peters:
And it just happened. It's really amazing. Now, I'm going to backtrack to a comment that you made really about how patients have to advocate for themselves to go to acute rehab. It's really challenging with insurance to get that to happen, but you said that that's the first big step. What do you recommend to our patients and their caregivers to get into those rehabs and then to get into programs like yours?

Dr Sia:
That's a great question, and so when someone is in the acute care hospitalization phase, let's say they went from the emergency department to the medical floor that they're on, I would recommend asking to see a physiatry consultant if available in the hospital or if not, they're going to see a physical or occupational therapist, and at that point, you really want them to recommend you for acute inpatient rehabilitation, specifically look for spinal cord injury centers around you. There are also a few spinal cord injury model systems in the country, so that could be a good way to search if there's any close to you or any academic acute inpatient rehabilitation center are going to have more spinal cord injury expertise. Now, if they recommended acute inpatient rehabilitation, then the next step is the social worker will send out referrals to those hospitals and they'll see which center will accept the case.
Let's say a center accepts your case. Insurance unfortunately, what we've been seeing is that they may deny because it is a more expensive level of care than let's say, subacute rehabilitation. Then please, I encourage the patients and the caregivers, the healthcare professionals to appeal this decision. If you feel that acute inpatient rehabilitation is appropriate, and oftentimes the appeal through a letter or having a conversation with the medical director can really make that difference to say what are the patient's goals and how can they improve? And how ultimately this is going to help the individual in the long run. They're going to progress quicker, further in a shorter amount of time, and also lead to reduced complications and re-hospitalizations.

Dr. Peters:
Then you can see Dr. Sia as an outpatient and thrive. That's what I think.

Dr Sia:
Exactly.

Dr. Peters:
So Dr. Sia, thank you so much. This is such a helpful conversation for our patients with spinal cord injury and their caregivers, and thank you for telling us that we all need a physiatrist. So I'm ready.

Dr Sia:
Well, thank you so much. It's been really a pleasure to have this interview with you, and thank you so much again for inviting me to speak on this podcast.

Dr. Correa:
Thank you again for joining us today on the Brain and 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 and Life magazine for free at brainandlife.org.

Dr. Peters:
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Dr. Correa:
You can also find that information in our show notes, and you can follow Katie and me and the Brain and Life magazine on many of your preferred social media channels. We are your host, Dr. Daniel Correa, connecting with you from New York City and online at Neuro Dr Correa.

Dr. Peters:
And Dr. Katie Peters joining you from Durham, North Carolina and online at Katie Peters MD-PhD.

Jessica Owen:
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Dr. Peters:
We hope together we can take steps to better brain health and each thrive with our own abilities every day.

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