From patient to pioneer: The Neurolog story

When the medical system left him in no-man’s-land, Steve took his recovery into his own hands. After surviving rock bottom, including severe mental health struggles and a gruelling 14-month wait for specialist care, Steve was facing up to 70 functional seizures every single day. In this episode, we explore how he turned a desperate situation into a digital lifeline. Steve shares the story behind Neurolog, the free app he built to track the "untrackable."In this episode, we discuss navigating the space between neurology and psychology, how Steve built an app while battling 60+ mini-seizures daily, how emoji-logging helped him reduce his seizures by over 90%, and Neurolog’s journey from a personal tool to a research partner with the University of Oxford. 

Link to the Neurolog website and App:

https://www.neuro-log.com/

https://www.neurolog.app/auth

Presented by Clinical Neuropsychologist and researcher, Dr Lana Higson. 

This podcast is for informational and educational purposes only and is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. 

Transcript

Speaker 0:01

Welcome to the Seizure Turnaround, where we explore the topic of functional seizures through conversations with people who provide an unfiltered record of their experience. Today we're sitting down with Steve Painter, the man who turned a relentless storm of up to 70 seizures a day into a global tech revolution. We're diving into his journey from a patient lost in a 14-month medical wait list to a pioneer whose app, Neurolog, is now cracking the code on FND in partnership with world-leading research institutions. Welcome to the seizure turnaround, Steve.

Speaker 1 0:33

Thank you very much for having me, Lana.

Speaker 0:35

So, Steve, can you first take us back to the moment you knew something wasn't quite right? What was the experience that you had before you had any label for it?

Speaker 1 0:46

I was working a fairly high stress job for a period of time and I had basically developed general anxiety disorder from the work-related stress that I'd had. That actually then morphed into obsessive-compulsive disorder. So I had a number of different psychological and sort of psychiatric conditions which were fairly standard. Throughout the course of that period of time, I unfortunately went through a marriage breakup and then obviously COVID lockdown happened and I got to a point of where I was isolated. I actually developed a substance use disorder for a period of time during lockdown. And then when we came out of lockdown, all of that depression and trying to function using all of that from that perspective, um, it actually led me to make two fairly serious attempts on my life. Yeah. So, and then after that, I went through the sort of general rehab. And it wasn't until probably nine months later that I started to get persistent dizziness, having challenges with my sensory perception, which then led to the actual seizures themselves. So it was almost an evolution from the general anxiety disorder and the OCD to the traumatic life event, which then led to the accumulation of all of that loads, which then created the seizures from that side as well.

Speaker 2:11

So, what happened in that gap between you experiencing the symptoms and when you received the diagnosis?

Speaker 1 2:19

So I initially met my first neurologist with my balance problems. So they first started looking into uh BPPV, so but I am positional vertigo, so it's a very common balance problem that people have in terms of it is it's not necessarily an inner ear problem, but it can be a neurological imbalance which causes dizziness. So they done a number of tests on me, and then they then decided that it would probably be FND. So that happened in April of 2024. I then waited until June of 2025 to have my first ever FND neurology appointment. So I waited 14 months from the date of my initial FND diagnosis to actually being seen by an FND professional.

Speaker 3:13

And what was the barrier to receiving treatment? Is it that they have long waiting lists or it's expensive or there aren't the clinicians who can treat it?

Speaker 1 3:22

Yeah, I mean, it's a combination of everything really. So with functional illness, they're only really starting to recognise treatment pathways. And in the UK, there's probably between seven to ten neurologists for the whole population of 52 million that have any interest at all in any form of functional illness at all. So if on average there's 150,000 people that are diagnosed with functional symptoms, and if you've got seven or ten neurologists seeing 20 or 30 patients a week, then you can imagine how long the time scales are from that perspective in terms of the waiting lists from that side as well.

Speaker 4:06

Gosh. And what did the word functional mean to you when you first heard it? And has that meaning changed over time?

Speaker 1 4:17

Uh it's changed massively for me. Um, though I was a big advocate during FND Awareness Day last week, talking about how we're sensitised and not sensitive. So the term functional, um, I found it to be very dismissive. The software's broken and your hardware's okay, is probably one of the biggest challenges that I've ever faced mentally myself, um, especially with the level of support that you get given. You get told the computer's not working in your head properly, and then get given a website, and then be left for four eight months to go and attend your next appointment. So it means that they've given you the indication that there's something wrong, but there's nowhere of you seeing what's wrong, and they don't really give you any support in terms of how fixing it as well.

Speaker 5:08

So were your symptoms primarily the dizziness, or did you have seizures as well?

Speaker 1 5:13

I've logged a number of symptoms that I had, so I have around 14 or 15 in total. So it started off with balance and sensory perception issues. So I was walking over an overpass one point when there was busy amounts of traffic, and my body literally completely froze and refused to move, and I then had to walk across near a busy motorway or a road very close to the road, and it was almost like I was going to constantly fall into it, and those episodes then actually developed into the functional seizures that I had. So I stopped counting when I was having between 60 or 70 mini seizures a day. So it got to a point of where I was almost completely dysfunctional rather than being functional.

Speaker 6:06

What did it feel like to you when you were having a seizure from the inside?

Speaker 1 6:10

So it's uh the dissociation, uh, the involuntary movements. Um, I speak a lot to people about it. It almost seems to have been like a concertina effect. So the mild advice that I was given is that I should constantly be distracting myself to stop myself from having these episodes. But it's almost like it becomes a pressure cooker. So for a long period of time, you're proactively psychologically suppressing them, and it would get to night time when you let your guard down and you're trying to relax, and they would all come out at once. So I'd be seizing multiple times throughout the course of the evening as well.

Speaker 6:52

So it took you a long time to get to a neurologist who see patients with FND. Did you feel like you really fell between the cracks of neurology and psychology, or where did you eventually go to get help?

Speaker 1 7:08

One of the biggest things is obviously the divide between psychology and neurology. And I think we understand the actual treatment pathways for seizures or non-epileptic seizures or whatever terminology is used is actually embedded within psychology itself. So whether it's bottom-up or top-down interventions in terms of managing those, you really need to have that level of support. And the fact that the condition has been inherited by neurology, it means that the link in care has been completely dismissed to psychology. So I had 24 hours of CBT sessions with someone face to face about my OCD and about my depression and anxiety. And when I told them halfway through those sessions that I'd developed seizures and functional neurological disorder, the psychologist had never even heard of it. And they were a doctor of psychology. So that knowledge gap between the two and the constant conversation would be okay, we can give you therapeutic interventions to treat your depression, anxiety, and OCD, but half of what your experience might be FND, and we don't even know what that is. So it's that whole challenge from that perspective that I was actually in the care system and being seen by a psychologist, but there there was that huge knowledge gap between functional illness and the psychological aspect as well.

Speaker 8:43

And I'm intrigued, do you think that the therapy for the OCD and anxiety and depression, did that have a knock-on effect? Did it help the seizures reduce in any way?

Speaker 1 8:55

Or not really. No, I mean just more dismissal, really. So at the end of those sessions, they they recommended that I did some form of um EMDR therapy. And so they associated obviously some of my previous traumatic events with the need for that emotional processing, but the public health system in the UK is overstretched. There's multiple year waiting lists for anything. So if they would have recommended that I go on that next therapy, then it could have been another two or three years before they even started addressing the trauma. So it's these huge gaps.

Speaker 9:33

Wow. And how did the FND or the functional seizures affect your identity, your work, your relationships? What did it take from you that people couldn't see?

Speaker 1 9:47

It literally, I mean, it's pretty much robbed me of sort of everything. And that's that's not being dramatic. So I've lost friendships, I've lost independence, I've lost mobility. Um, my functional symptoms still affect me as much where I've just had to buy myself an electric wheelchair. So I was actually housebound from November of last year, and unlike you guys, we're just getting into spring at the moment. So that first sign of sunshine again, I thought there's no way that I can restrict my independence or my ability to be able to get out in society. So I'm in my early 40s, and I thought whether or not is this sort of the ultimate waving the white flag and giving up, or is it liberation? So it's a case of yeah, going out and getting that transport and then being able to reintegrate into society from that perspective as well.

Speaker 10:43

Yeah, I can imagine that's a really hard decision. It's a bit of a double-edged sword, isn't it? Because on one hand, you don't want to decondition, but on the other hand, it allows you to do things that you may not normally be able to do.

Speaker 1 10:54

Yeah, completely, yeah.

Speaker 10:55

Yeah.

Speaker 1 10:56

With the seizures themselves, it's that whole worry. One of my biggest things is always been about my balance and falling over, and especially at night time in the UK, um, the roads are very small, and I have lots of trouble with sensory perception. So modern day car headlights that full beam, LED, they're extremely stimulating. So I don't think I've been out of the house at night for a year and a half or two years, so it really shows how debilitating they are from that perspective as well.

Speaker 11:30

So gosh. Wow. And so, Steve, was there a turning point where you shifted from patient to someone with a sense of agency? And is that where neurolog comes in?

Speaker 1 11:46

Yeah, definitely. Yeah, that's it. So that 14-month gap between my initial diagnosis and actually seeing the FND neurologist was the vacuum where neurolog was effectively created. So I didn't want to go into that appointment. If I was going to have one hour of a professional's time, I didn't want to be having a very generalized conversation about the way the this diagnosis was affecting me. So I started creating Neurolog the app at that point and starting to log my symptoms and see whether or not there were any patterns in terms of my triggers or from an emotional perspective or an environmental perspective. Because I think one of the things that we'll all agree with people that live with seizures themselves is the unpredictability of it. So you never know what's going to happen from one moment to the next. It's impossible to plan anything. And that then leads to an element of hopelessness, depression, and despair. So hoping to identify my triggers and potentially some of the environmental or social triggers of the seizures would then start giving myself a little bit of control over the diagnosis that I'd had as well.

Speaker 13:07

Wow. So you were finding control through really detailed tracking and really trying to put this puzzle together. This is a great time to actually walk us through because I know nothing about Neurolog and I'm so keen to hear about what it actually does, what problem or problems does it solve that existing tools, while I don't even know if there were any existing tools, don't solve.

Speaker 1 13:33

Yeah, so the app itself is now the largest source of longitudinal symptom data in the world on functional neurological disorder and functional seizures. So I actually created the app for myself, as I said, in my dining room to prepare for a doctor's appointment. We then launched it in the summer of last year, and we now have over 2,000 users from 13 different countries who are all logging their symptoms. Um, they're writing free text in terms of what they're experiencing as well. And we started to identify en masse what are things in terms of the whole bio-psychosocial element of the condition. So we're looking at the emotional aspects, uh the physical aspects, the biological aspects, and the environmental aspects. So that's it in a nutshell. The app itself, preliminary, was designed to help people log and then produce a sheet which they could then take to either their therapist or their clinician to say, this is exactly what's happening to me. Can you give me some help? So overall, that was the initial mission from their perspective as well.

Speaker 14:49

I suppose a clinician could develop this tool, or say a neurologist or someone who treats the disorder. Can you give us an example where being a patient made you design something differently to how perhaps a clinician would have?

Speaker 1 15:06

Yeah, so it is it's all down to patient-led innovation and real-world experience. So I think the complexities of FND and seizures, it's something that it can't be read out of a book. So unless you're experiencing it firsthand, then I think that's why it's so difficult to understand from a therapeutic or a clinical perspective, because until you've actually experienced the everyday's almost like a lottery, and you can't even predict what's going to be going on throughout the course of that day, then that needs to be able to regain a little bit of control and a little bit of agency over what's going on was clear. And it was literally a process of me logging a few things. So the app itself, it uses emojis for people to log. When people have got brain fog, or 40% of the people who use neurolog, they're neurodivergent. So they have problems with emotions and sensory perception anyway. So we use emojis to collect the data. So it's very easy to do. If you've got brain fog or seizures, then you can quickly log and then review over a period of time what's been going on and what's been helping and what's not been helping as well.

Speaker 16:27

That's absolutely brilliant. And I imagine that's fantastic for people with intellectual disabilities as well, just having that emoji that they can mirror. That's amazing. And just on that, that's a double-edged sort of like asking people about their symptoms, so you're sort of drawing attention to it and they're reminded of it. So, my question, I suppose, is around you know, this symptom tracking, which could also be quite emotionally loaded for people thinking about that. So, how did you think about the psychological weight of asking people to log their episodes every day while you were designing this?

Speaker 1 17:02

It was designed by myself. I obviously used it for a period of time. We then had the app certified by an FND psychiatrist in the UK, so a practitioner who works in the NHS. The NHS had already actually designed an app called MyFND, which existed way before Neurolog. Some of the parts of it were great, some of the parts were probably less to be desired. So the concept of me actually creating an app, I thought someone somewhere has had an idea of creating an app for FND, is a good idea, but they're missing lots of elements of it. So Neurolog was almost just an evolution of that. And yeah, I mean, I found personally that it is a challenge. Um, I mean, people are encouraged to keep journals or to manually fill out pieces of paper and identify what their triggers are. So it's just really a digitisation of some of those ideas, really. So you are looking into that. But for me, it was I used to use it in the evenings after the course of the day as a point of reflection. It only takes probably two or three minutes to complete the whole log, and then after a period of time, it will start producing you reports, which then show you exactly what's been going on, what your triggers are, what emotional states cause your symptoms, and then it then allows that reverse reflection. So that's how it empowered me to be able to manage my symptoms a little bit better from that.

Speaker 18:39

Wow, that sounds amazing. And did you have any moments where you know your own condition interfered with building the app that you were designing to help manage it?

Speaker 1 18:50

Yeah, completely. And then it still does, to be honest with you. So I feel deeply burnt out this week because it was FND Awareness Day last week in the UK. So it's obviously all this proactive advocacy and pushing the app out and pushing the information out and obviously worked too hard, and then it's almost like I'd burnt myself out through advocating for my own condition. So there's that double-edged soldier, as you mentioned, of going out and trying to do good, but then having that personal load as well associated to it as well.

Speaker 19:24

Trying to keep it in balance, yeah. What do you think, Steve, that the medical system gets most wrong about, for example, there are a few of those apps floating around. What do you think that it hasn't taken account for when they're sort of collecting patient-reported data? Or maybe even in broader sort of research studies, what do you think we should be collecting? I suppose if we're not?

Speaker 1 19:48

It's the variability and the longitudinal information which needs to be really granular from that perspective. So the existing app, it was very generic. It would have two or three different emotions, like smiley face, happy face, or middle face, nothing in between, whereas Neurolog collects 49 different emotional states. So there's things in there like frustration, hopelessness, sadness, excitement. We used the wheel of still from CBT to try and really capture all of those emotional complexities. And then in terms of the physical presentations, there's around 30 in there. So there's seizures, then there's gait disorder, there's a number of different things, and we can really closely map now how those different emotional states then and the environmental factors then amplify the physical symptoms. So you're collecting a lot of complex information on a very complex condition in the space of two or three minutes. So it's the ability to be able to start unpicking all of the complexities, but doing it in the nature where people can do it very quickly, and it's not a big long, massive survey or something the lady to go out and do. It's it's the convenience of being able to pick it up and access it and use it from there as well.

Speaker 21:13

So it sounds like it's got a dual benefit. So there's a benefit to each individual person who uses it, and they can use that as trying to understand their own condition and what's triggering it and what's exacerbating it, maybe. And then it sounds like you have the ability to collect aggregate data. Is that correct?

Speaker 1 21:34

Yeah, every user who signs up for Neurolog, there's a privacy policy and then a statement in there. So they're all actually willing to contribute towards research because the constant narrative about this condition online is uh there's not enough research done into it and there's not enough medical staff trained into it. So I thought, how can the app not only help patients, but how can it afford research? So everyone opts in when they sign up to Neurolog to say that they're actually contributing towards that real world data. And we partner with the University of Oxford at the moment. And that was the first agreement I assigned. I had to pinch myself at that point because it came to a point of where it was something that I'd created in my dining room for myself to prepare for a clinician appointment. My first ever academic partner being one of the best research institutions in the world. So that really touched me and it helped a lot from that perspective.

Speaker 22:43

That's so wonderful. Have you had any publications out yet? Is there anywhere we can read about what you found so far?

Speaker 1 22:50

Yeah, I work with another provider called Reattach, who are based in the Netherlands. So there's a lady called Dr. Paula, who basically has been my mentor from a publishing perspective. And we've published a number of papers in small independent journals. I'm actually due to be published in the Journal of Neurology, which is the first big peer-reviewed paper, probably within the next month or so. But the small ones that we started creating, the most recent ones about the emotional architecture of functional movement disorder. So that looks very similar to the freeze response. So there's lots of frustration, sadness, hopelessness. So this diverse emotional data that we've collected, it started to build a picture of what that disorder looks like. And the next one that we're moving on to is the seizures. So we want to identify if there's preictoral or post-ictal phases of a functional seizure. And we really want to dig into the whole hyper-arousal element of the seizures themselves, because although it's very closely related to general anxiety disorder and anxiety, there's around 50 to 80 episodes of neurolog users who have had their seizures triggered by excitement, which is it's hyper-arousal, but it's not hyper-arousal in the challenging psychological sentence is hyper-arousal from a happiness perspective. So that would then really start to sort of unpick and understand everything.

Speaker 24:29

So you're saying although it shares the same autonomic nervous system signature, the mood is differently categorized. Wow, that's fascinating. That's so interesting. And can I ask what you've discovered about your own seizures and your own emotions?

Speaker 1 24:45

Yeah, I mean, so I managed to get my seizures down from 60 or 70 to I probably have about four or five a day now. And that was from actually using the app itself. So um I wear things most of the time, so FL41 glasses for my light sensitivity. So I learned from the app the exposure to blue light and the whole sensory element was a big part of me. Um taking relaxing really seriously as well, which was another huge thing for me as well. So having a set time I went to bed, set time I get up in the morning, is it's pretty boring, but literally every day of the week from Monday to Sunday is don't stay up until ridiculous o'clock on a Friday and Saturday and watch a movie just because it's the weekend. It's that returning to the baseline and that regulation, which is so important from that perspective in terms of the management as well.

Speaker 25:44

That's right. Absolutely crucial. Yeah. What do you wish that someone had told you early on?

Speaker 1 25:52

So, I mean, one of the biggest things that I'd say is I mean, I'd have been given more psychological help, to be honest with you. I think that is the biggest area because those emotional amplifiers and the anxiety, and everyone when they first diagnosed is it's chaos because you get caught in these self-perpetuating loops. So the anxiety can create the seizures, the seizures then naturally make you anxious, which then creates the anxiety, and people get caught in a constant loop. So, I mean, I would say to someone who's newly diagnosed, to look into the way that you can potentially break those loops and then really celebrate the small wins that you have. So, and any progress is progress. So if you can get them a little bit under control, then it's a journey which is going to take a fair period of time and it's going to be unpredictable. But learning those self-coping mechanisms, and there is definitely hope after the diagnosis and getting the seizures down. I'm not saying full remission, but definitely to a manageable perspective as well.

Speaker 27:01

Do you see yourself keeping on improving? Do you think that you're sort of on the right track?

Speaker 1 27:06

Yeah, I mean, I need to practice what I preach half the time, really. I'm constantly talking to people the whole time about pacing and about sensory diet and things like that, but I don't necessarily do them all myself. And the app itself's obviously it's gone from me not having a purpose and being fairly chronically ill to actually creating something which has got a huge amount of purpose, not only for me, but for the thousands of people that use it. So it is just a case of yeah, just sort of being not strict with yourself, but you've really got to understand the allostatic load or in sort of real-world terms, just the burden or the load where it just happened from a biological or a psychological perspective, it's caused you to become highly sensitized. So you need to be patient and kind to yourself and understand that you need to return to a baseline and to be able to move back up from that. So all the time while there's chaos, then you're never going to be able to achieve that level of equilibrium to be able to sort of move forward and improve and get to a stage of remission. So there's definitely hope, but it takes a lot of self-discipline and maybe a little bit of change in the way that you operate to be able to get to that stage as well.

Speaker 28:31

Yeah, yeah. I'm so excited for you and congratulations. It's absolutely wonderful what you've done. Can I just backtrack a little bit to what about say there's a patient who says, I'm not emotional, my symptoms aren't tied to emotion, and they're very adobeant that, you know, they're not stressed or they're not anxious. How could your app still help someone like that?

Speaker 1 28:54

So the biggest part of research that we're doing at the moment is into PAG, which is periaqueductal gray matter in the brain. And what we're rapidly seeing is in functional seizures and functional movement disorder, the central nervous system or that part of the brain, it can't differentiate between psychological trauma or biological trauma. So someone who's had chronic illness for a period of time, if they've had chronic pain, it can evoke the same threat response as someone who's got complex PTSD. So we're all these beautifully complex human beings, but our actual defense system is very simple. And it's basically saying that you're being affected in the same way as someone would be emotionally. Just because you don't have a history of mental health doesn't mean that your body's defense system can't have been triggered by something. So it's that biological or someone said I had um a severe injury which caused my functional seizures to me the other day. And my conversation with them was that A, that can obviously trigger the body's natural defense response. But I think the majority of people, if you've had a severe injury, there is going to be some sort of emotional burden or context associated with that. And so it's the fact of how the interplay between neurology and psychology or biology is so close that it's so intertwined. And I think really separating those two has been one of the biggest challenges in terms of obviously forwarding research and treatment from that side of things.

Speaker 30:38

So yeah. And we know that the condition predominantly affects women. So a couple of questions on that. Do you ask women to log their monthly cycles to see any correlation there? And my other question is do you have any thoughts or ideas about why the condition predominantly affects women rather than men?

Speaker 1 30:59

Yeah, that is it is a mystery really. So we've created the biggest co-occurring conditions questionnaire ever on people with functional seizures and functional neurological disorders. So we started that at the end of February, so it's only been a month, but we've had 850 responses to that questionnaire itself, and we looked at things that proceeded during and after their FND diagnosis, and it's really eye-opening. It's probably been the biggest part of the project ever in terms of really getting an understanding of what's what, and there is a huge amount of people in there that are in terms of females that are about um sort of perimenopausal or sort of the whole hormonal side of things. So so why aren't women seem to get it more than men? I still don't know that's a question to be answered. But our demographic is 80% female, 20% male, and the most shocking statistic out of everything is that 40% of them are neurodivergent. So they've either got ADHD or autism, which throws the whole spanner in the works in terms of the dialogue that's gone in the past about there is a sensory perception disorder. I believe that a lot of people that are diagnosed with it had sensory processing challenges way before they got diagnosed with functional symptoms. And the FND or the functional seizures is just an amplification of what's already there. So it amplifies anxiety, it amplifies sensory protection, it amplifies a number of different things, emotional regulation, so it's that balance between the two and getting an understanding of who these patients actually are and then making judgment. Because if you're doing Bayesian brain comparisons about sensory processing on neurotypicals and a vast majority of the population are neurodivergent, then they might not have even had that baseline to start with. So everything's off the their emotional processing and their sensory processing might be might have been different. So using these neurotypical brain models to create these prediction theories on a disorder where most people aren't neurotypical, it sort of brings in that whole question of research from that perspective as well.

Speaker 33:33

And Stephen, were you an app developer or a scientist? What's your background?

Speaker 1 33:38

So I actually worked in international education for a long period of time. So I ran my own business recruiting international students for a number of different universities across the globe. During that time, I developed software for that company. And when I first got diagnosed with FND, I was spending way too much time in front of my computer, way too much time, spare time, and I thought I'd just teach myself how to code and how to learn concepts. So I'm not sort of traditionally taught from an academic perspective. It's it's self-taught and being health bound and basically spending way too much time in front of a computer, which has led to the creation of Neuralog.

Speaker 34:25

We're very grateful that you spent all that time in front of a computer, even if it wasn't good for you. Thanks for doing that. Um, is there anything that I haven't asked you or anything that that I should have asked you that we haven't discussed?

Speaker 1 34:40

No, yeah, I think it's great. I just want to say a few thank yous to people like Lorna Myers, who's opened her ears and her eyes to Neurolog at the start of the project. Um, me not coming from an academic or a clinical background, um, I've obviously had quite a lot of pushback from different parts of the community because rightly so, there it is understandable that there is that academic hierarchy, and especially when you start talking about medicine, but there have been a lot of open-minded professionals like Lorna and like Dr. Abra who have been open-minded and really spoken about this patient-clinician partnership, because a lot before it was purely the clinician that would tell what's wrong with you and what you need to do. Whereas neurologue challenges that a little bit and it actually empowers the patient to be able to provide this very detailed information to the clinicians, and sometimes that can cause a little bit of fraction, and other clinicians will be really open to it and say, we want as much information to you as possible. So it's really nurturing those patron clinician partnerships and sort of moving things forward from there as well.

Speaker 35:57

So, people who are listening, where can they find the app? Is it free? How do they get it?

Speaker 1 36:04

Yeah, so it's hosted on www.neuro-log.com. So that's our website. We never plan to charge a patient to use it forever. So we all go through enough having seizures and functional neurological disorder, and I don't feel that people should be paying to log their symptoms, but in return for it being free, we obviously then do partner with research institutions to help forward the research. So it's a real give and take in terms of it's not a bottomless data and information. There are people that are actively out researching, and neurolog itself, we produce very light therapeutic interventions based off the data that we collect, like DBT interventions, acts, uh breathing exercises, just a few like little tasters. So the community are always proactively logging, and they shouldn't have to wait three years to get anything back. So we've produced a number of little infographics where you can say, based on the data that we're collecting, this might help, or another intervention might help to provide that ongoing live support from the info that we're as well.

Speaker 37:23

Wow, it's just so impressive, Steve. You should be very proud of yourself. Are you are you do you feel like amazing like that you've done this?

Speaker 1 37:32

Well, I'm quite introvert. I mean, you're probably sore from speaking to me from the last hour there. But it's lovely to. I mean, one of the stories was the lady on the Facebook messaged me and said, Look, my son's had this for six months. He's neurodivergent, non-verbal, and we haven't had a clue what's been going on. And he said, We've used your app, and it's the first time he's actually been able to communicate with us what's going on. And at that point I thought, well, this can be sort of life-changing, not for me, but for other people that are using it as well.

Speaker 38:07

Absolutely.

Speaker 1 38:08

And I get regularly comments on social media about being inspirational and being inspiring, and it's it's something that yeah, it just really warms my heart from that perspective. It's it's lovely to see that obviously it develops like that from that side as well.

Speaker 38:24

It's all well deserved. Thank you so much for chatting with us and sharing your story as well as the creation that's come out of it's amazing, isn't it? It's it's sort of what can come out of adversity when we put our minds to things and yeah, it's just really inspirational. And we'll put a link to the website where people can find the app in the show notes, and we might have you on again in a year or so to hear what you're up to and what you can share with us. So, yeah, thanks so much.

Speaker 1 38:53

Definitely. Thank you so much for your time.

Speaker 38:57

You've been listening to the seizure turnaround with our guest, Steve Painter, the man cracking the FND code one log at a time. To see how he's rewriting the future of FND, head over to neurolog.org.uk. Coming up next on the seizure turnaround, imagine navigating exams, friendships, and first dates while your brain is fighting a battle of its own. We're going inside the world of youth and FND to hear the raw, unfiltered reality of being a teenager with functional seizures. Until then, stay well.