I'm Not Dead Yet!
A close look at an extraordinary life with Parkinson's Disease. Quirky and irreverent hosts Judy & Travis take a look at this most tragic of events: life with an incurable disease and why it’s important to declare that I'm Not Dead Yet!
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I'm Not Dead Yet!
EP-125 Revolutionizing Parkinson's Care: Magnes's Innovative Sensor-Equipped Shoes
Discover the groundbreaking world of Magnes, the Swiss innovators reshaping Parkinson's care with their state-of-the-art shoe technology. Join co-founder/CEO Olgac Ergeneman and Business Development Manager Chinouk Van Nijen as they unveil how their sensor-equipped sneaker changes the walking game for Parkinson's patients. Hear about the journey from the clinical setting to your living room, where these shoes act as personal gait coaches, providing real-time feedback to combat symptoms such as freezing and shuffling. The duo shares the shoe's seamless blend of technology and style, ensuring users feel both empowered and discreet in their everyday lives.
Peek behind the curtain at the smart cueing system that uniquely adapts to each wearer's walking pattern, distinct from traditional methods. Uncover how continuous feedback from patients and clinicians drives innovation at Magnes, resulting in enhanced features and new activity modes. With exciting plans on the horizon, including a line designed for children, Magnes is committed to evolving and meeting the diverse needs of its users. Subscribe to stay informed about upcoming trials and events, and see how these ingenious shoes are stepping up to redefine mobility for Parkinson's patients.
More info can be found at magnes.ch
Sign up for their newsletter here: https://www.magnes.ch/contact/
or by emailing info@magnes.ch
- Co-hosts: Judy Yaras & Travis Robinson
- Editor & Audio Engineer: (EP1-100) Spencer Yaras
- Audio Engineering Intern: Ana MacAller
- Social Media Intern: Ana MacAller
www.INDYpodcast.net
Welcome to the I'm Not Dead Yet podcast. I'm your co-host, Travis Robinson. I was diagnosed with Parkinson's disease at age 35 in 2014.
Speaker 2:And I'm your other co-host, judy Yarris. My husband, sandy, had Parkinson's disease for 18 years and I was his care partner.
Speaker 1:Today's episode, we have the privilege of speaking with the co-founder and marketing director of the company, Magnus, here to talk about their product new shoes Good morning.
Speaker 2:Hi everybody. We should say that they are located in Switzerland, in Zurich, am I correct? That's correct. So we're speaking across the pond, so they speak, so they say I don't know if that's the right thing to say, but in any case, we're so happy to have you. Both Travis and I were lucky enough to meet Ulgok and Chinook and I'm not going to say their last names because I will destroy it so I think it's better if we just are on a first name basis. But we met them in Barcelona at the World Parkinson's Congress a couple of years ago, and I think that it's really wonderful. I thought the product sounded so interesting and I want to have you really talk about what the product is and the origin of it, how it came about and why, because I think this is something that is, aside from very cool, and we've talked about wearables on this show a little bit, and this is clearly a wearable product and an interesting one. Okay, so I'll turn it over to you.
Speaker 3:Yeah, thanks, judy for the introduction. This is Olga speaking and Chinook. If you want, you can start with the product and I can maybe add a little bit like yeah, well, where it came? How was the kind of our story started?
Speaker 4:Yes, let's do that. So what we've developed is a shoe, but it's not a normal shoe because what we have done, in the sole we have embedded all kinds of sensors, the computer and even the vibration unit, and what you can do with that is that we can measure exactly how somebody is walking, and this can give us a lot of information, and we can also then see at which certain moment we have to give a vibration, and these vibrations they help patients to improve their walking. So what we see, also for Parkinson's patients, for example, is that with this vibration, which is an external cue, it can help to avoid, for example, freezing of gait or the shuffling of gait, and it really improves the quality of life.
Speaker 3:What makes our technology unique is we can analyze the gait of the person using it in real time and we detect the different phases of your gate and then give this simulation with vibrations, this feedback at the right moment. That's kind of, I think, what makes this technology work and what makes it different than I think, all other things kind of available.
Speaker 2:Was this originally designed to be used in more of a clinical setting, so in PD clinics or with physical therapists what are they called in Europe? They call them physios, right, yeah, physiotherapists. Is that more where you designed it, or did you see it more as a consumer-based product?
Speaker 3:I think originally it was more targeted towards clinics. So we wanted to kind of use the shoes to collect data to a little bit like support this decision making, collect the data. But also, I think, from the very early days we were interested in the rehabilitation part because we wanted to develop a solution which, let's say, makes a change in patients life. So this is, I think, really important. That's where this real-time feedback comes. So we wanted to kind of give them this feedback on the right times, to make them, let's say, improve their movements, get the feedback all the time they are wearing it. But yeah, of course it starts usually in a rehabilitation facility and it is a second step we want to bring it home. So, yeah, originally I think we were more focused on clinics, but now I think, yeah, actually we are happy to see that a lot of patients use it on a regular basis at home, outside.
Speaker 2:I want to add something here too. You know, when we think of medical shoes, we think of shoes that look pretty scary, sort of a little bit like the Munsters, but these actually look like a sneaker like a sneaker that you wouldn't mind wearing. So I think there's something to be said for that. But you know, it gives someone a feeling of normalcy with the type of shoe that they might normally wear.
Speaker 3:I think it's really good you pointed that. So yeah, all our technology is kind of we embedded everything in the sole, so from outside it really looks like a normal sneaker and when you wear it also, you don't really feel any different. Yeah, that's great.
Speaker 2:I think that's an important factor. I'm a very vanity always comes into play for me, so I think you know for most people they want that.
Speaker 4:Yeah, and it's also something that we really kept in mind that we hear a lot from patients their feedback that they want something, that if they walk on the street other people don't know they have something. And that's exactly with the shoe. It looks like a normal sneaker, so you don't see that somebody is using a special shoe Because orthopedic shoes most time you see it's an orthopedic shoe or shoes. It looks like a normal sneaker that you're wearing.
Speaker 3:And the shoe is also. It is also totally hidden, right. So the vibration, it's only the person wearing it feels it and from outside, yeah, no one really understand that. You get this feedback. Yeah, that's also, I think, what we hear a lot, that they like that. Yeah, it's totally hidden, uh, for people, uh, being there allows for a stealth mode.
Speaker 2:Right. Does this connect to their phone also? Is it something that they see it on their phone or they can start it or stop it with the phone, or is that not part of the technology?
Speaker 4:It's part of the technology. So there are two options you can use a phone but you don't have to use the phone. So when you have a phone you can connect't have to use the phone. So when you have a phone you can connect to your shoes and you can change the vibration mode, or you can turn the shoes off or on. But you can also collect data. So we have also a lot of patients that really find it interesting to see how they are walking, if they have a different walking pattern in their on or off state of the disease, or look at when they take the medication. Is there a difference? And with the shoe they can collect all this data and in the app they can then see if there's a change in their walking pattern.
Speaker 2:Wow, that's pretty fantastic. When you think about it, you know to be able to get that much information just from a shoe. So when people are, if someone is interested in this now, are they able to go through Magnus directly or New Shoe directly, or does it need to have a prescription? I mean, I'm you know, I know that we saw many things in Barcelona and a lot of them have not made it to the States yet. So both Travis and I were kind of wondering what's the status on being able to have them in the US. Are they being tested here? Is there FDA approval? Will there be insurance? Probably not. I don't know. I'm a realist here, but give us some background on that, like what the process has been for you also.
Speaker 3:I think we have a model where we really want patients to test this or have a chance to see the shoes, try it before they make a decision. So we are partnering with many physical therapy clinics, some hospitals, neurologic clinics in the us and I think to to find, like, which ones are offering this.
Speaker 3:you can check our website so it's changing and it's a relatively new product. So we are adding also new centers every uh, every week almost uh. So that's a little bit like what we expect, like if you're interested, you can then check, find a clinic close to you and then arrange a session with them. So we make sure that the patient is kind of someone is introducing the shoes, they get a good kind of instructions like how to operate it and they check the different vibration modes and then, if then it's a solution for them, they can then get it. So this is a little bit like the model. And in terms of the insurance, I mean right now it's unfortunately not covered, but we are actually working on it. So on the long term, we see the benefit and I think, as we have more and more clinical studies, more evidence, we also expect that at some point it will be covered by the insurance.
Speaker 2:Are they doing clinical studies in the US?
Speaker 3:Yeah, we have actually many clinical studies ongoing right now in Europe, in Australia, in UK and also in the US recently. So we work with prestigious clinics there In California. Actually, we have several partners. We work with UC San Diego, UCLA, Stanford University and also we have several places and, yeah, Harvard is one of them. So, yeah, many, many studies are going on. I mean there are also some of them are just starting, but, yeah, there will be many sites for clinical studies in the US.
Speaker 2:And if people are looking to get into a clinical study, would they go through Magnus or contact UCLA, let's say, or Stanford?
Speaker 3:what would be the best way to do that? I mean, we have to check with them. So some of them are more in the early stages so we haven't started kind of hiring the patients. But yeah, I think that the easiest would be to maybe subscribe to our newsletter, because we easiest would be to maybe subscribe to our newsletter because we, yeah just from them about these things. So, yeah, the exact recruitment, I think it depends on the which study and if you need more people. Some are bigger, some are smaller studies. But yeah, why don't they kind of, if anyone is interested, just subscribe to our newsletter so you make sure that gets all the information about these yeah, and also the for the newsletter.
Speaker 4:Like we announce when we have test events as well. So like next week, for example, we have a test event in new york and boston. Our patients can sign up. They book a slot to test out the shoes because we're now we started really in the west coast of the us, but now we're so exploring the east Coast and a little bit more the inside of the US. So there we always announce when we're doing a trip and patients can also see there all the tryout events.
Speaker 3:In November also, we'll have an event in Florida and one in San Francisco, so yeah, Well, that's great.
Speaker 2:I actually know some people from our groups that could possibly go in from San Francisco. We have several people in the Bay Area that join us.
Speaker 3:That's fantastic shoes, but we like this interaction and, yeah, usually also someone from our team in europe joins these events. Yeah, I'll be there in november. Right now in the east coast, yeah, our colleague is there, and so this is really important for us that's great.
Speaker 2:um, and just so you know, olga, because I know you, like you are a little bit of a foodie, as I am there's great restaurants in San Francisco, so you will enjoy. If you haven't been there, I know you're going to enjoy that.
Speaker 3:I know who to contact before I trip. And yeah, you also stop by in LA, so yeah, we can maybe go out together for a nice dinner. But yeah, I'm working on my schedule for the next trip. So yeah, I'll let you know.
Speaker 2:Wonderful. So I am curious and we always like to ask have there been any drawbacks? Anyone that has said they just they don't like it. I'm trying to remember now when you were here and we did some testing last year. You were kind enough and wonderful to be one of our sponsors with PCLA for the LA Marathon and I'm curious if someone has neuropathy in their feet, how does that work? Is it something that can still work, if it's not too bad, or could you address that a little bit?
Speaker 4:Yeah, so what we see with neuropathy there's a chance that it doesn't work. So we have seen with patients where they didn't felt the fibrillation at all and we also saw then there was not an effect on the walking pattern. But we also have seen now a few patients that didn't felt the fibrillation but actually when they start walking with the vibration we saw an improvement on their walking pattern. So I mean, it's a really complex disease but it looks like that even if you don't feel the vibration there is still a chance that the shoe can help to improve the walking as well.
Speaker 3:That's really interesting this is something we want to also explore and there is, I think, a lot of literature on subsensory stimulation. So it is actually yeah, even if you don't feel it, the signal might be still going to the right place, so it can make a change for you. But again, I think the nice thing about our solution is it's really easy to try and see yourself. So we encourage people to do it and if we know that they have neuropathy, we still encourage them to test it. It might still make a change for them. But yeah, there are also people they don't feel it and they cannot respond. So that's also. We observe this too. So there's a chance that it might not also work for those people with neuropathy.
Speaker 2:Okay, Is there anyone else that might have a difficulty with it, or not so much, just really the neuropathy that would be the impact.
Speaker 3:I mean, I think cognitive abilities may be something. If they have serious problems, then they don't maybe understand what to respond to or getting the signals. It might be like a little bit of an issue. So if you do maybe any, let's say, a correlation, that might be again like a group. If they have a serious cognitive decline. It might not work.
Speaker 3:But again, like I think it's easy to test so they can. We don't need to exclude them so they can give a try. But that has been a little bit our experience. But this is a little bit also like what we want to learn from the studies. So that's why we have many sites right now we're conducting all these clinical like what we want to learn from the studies. So that's why we have many sites right now. We are conducting all these clinical studies. So we want to understand actually like both the mechanism and also who responds to this kind of feedback and what can we do to improve it. We are also developing a lot of new modes. This is actually like a lot of new things coming. So we are a technology company so that there will be a lot of new functions becoming available in the next months, next years. So that's also I think quite interesting to see get this feedback and develop the next things.
Speaker 1:Right, can you explain a little bit about how the feedback works, how it helps to change a person, or just by vibrating?
Speaker 4:Yes, we can. So what we see with Parkinson's, like there's a dopamine deficit in the brain and normally that helps to have the automatic walking effect. Parkinson's there's a dopamine deficit in the brain and normally that helps to have the automatic walking effect, and with Parkinson's patients it goes wrong in the brain there. So with the shoes they get an external cue and this helps them to change the walking from an automation to more goal-driven walking. So they use the cues to keep walking. Where for us, or like for me as a healthy person, it's all automated, I can walk and I don't have to think about it. But this process goes wrong with some Parkinson's patients and then with the shoes and the vibration they get every step a cue and it helps them to keep walking and not to freeze, for example and I think the nice thing about our solution is also we don't give them just a periodic signal or something.
Speaker 3:We are really analyzing their movements and giving this feedback at the right moment so it doesn't become also something routine, otherwise I think the brain can still start filtering it. But you know, shoes don't vibrate if you stop. If you start moving again, then it just vibrates at the right moment. So it's a little bit like a smart queuing, we can say, because many queuing devices are just periodic signals right now. But in our case it's a bit different and it's really the shoes. I think you can imagine like that the shoes adapt you. It's not like you have to adapt their rhythm or something as you walk. It adapts you and it gives you the feedback at the right moment and, yeah, you can make the trick for some people.
Speaker 3:But I should also say freezing is quite complex and I think it's really changing person to person and it's also, I think, an active research area. A lot of, I think, researchers are now also trying to understand better what causes it and what is the different types of freezing, I mean how it is linked to falling, all these things. I think there's a lot of, I think, research going on on these topics. So it's a little bit also. I think there's a lot of research going on on these topics. It's a little bit also, I think, as time passes, as we have more studies, we understand more, but it's not easy to explain everything. This is a little bit like how we are seeing it today. Another, I think, quite interesting problem to look at but not easy to, I think, explain every detail here.
Speaker 2:It's not really like a metronome. So you know, you always hear people say, when they start to freeze, that if they either sing a song or they get a light cue or something that will help them get out of it, but it doesn't seem to work on that same principle. Then it seems to understand what the body is doing a little more Correct. Is that right? That's right.
Speaker 4:Because the shoe in real time measures how you're walking. So the moment you walk faster the shoe will detect it and then you'll keep giving this vibration at the right moment, even if you walk faster or you start to walk slower, where with a metronome you really have to walk on that rhythm of the metronome and if you stop walking the beep just keeps going With the shoe. It really kind of personalizes to you. So every step it detects what you're doing. It keeps vibrating at that specific moment because it's measuring the whole time how you are walking.
Speaker 2:It's interesting really fascinating to me.
Speaker 3:In parentheses we can still give the metronome, so that's also a mode you can use. Some people also like to get this rhythm. They want to go at a certain rhythm and go over. Maybe I think with many Parkinson's patients that's not usually what they like to, what they like to use. But yeah, if you're interested in having a rhythm, we can do that.
Speaker 3:So it is so individualized, which is really fantastic, that you've been able to create that and make it better. I mean to me, the technology. After coming off this morning with having some technical difficulties, I'm always fascinated by what can be done in the optimal sense of working with technologies. So can you guys describe what your new shoes kids product is? Yeah, so someone checked our website and did his homework. It looks like this is a, let's say, a new product that we will be actually launching, I think think next year or the year after. So right now it's under development.
Speaker 3:We have some research going on and some studies kind of getting started, but it's not yet available. I mean, for children also, there are many, let's say, movement-related problems. I think cerebral palsy is one actually issue where they do regular kind of gait analysis. So we see many use cases for our solution for children. I think cerebral palsy is one, but there are also, I think, other let's say gait disorders in children or some, let's say, walking problems. I mean one example is like toe walkers Some children walk on their toes, so we are also developing a mode for them that they get the sweet back to correct it and the nice thing or the initial sweet actually, interaction we got with the kids is they love vibration. We had kids that we tested and they didn't. We couldn't get the shoes back.
Speaker 2:Oh, that's great Because I think you know the walking on toes, from what I understand, is a sensory issue for children that have sensory issues and so that would make sense that that could really be an important tool for them.
Speaker 3:That's wonderful vibration when they do the right movement, for example. It's a little bit like the direction we have there. But, yeah, this is again like. This will become available, uh, in the next year. So it's not yet on the market, but we see that also. It's like a it's an important field and we yeah, we will be also active in the children, let's say, version that's exciting.
Speaker 1:So as of right now, you guys have the one broader new shoe X, correct? It's just the one shoe that is presently available.
Speaker 2:Yes, that's correct, it's a black shoe. It doesn't come in colors, correct? You haven't? It's dark blue, oh, dark blue, okay.
Speaker 4:Yes, it's not only for Parkinson's patients. We see also other neurological patients that have benefits from the shoe where we have stroke patients, MS patients, but it's yeah, at the moment we only have stroke patients, MS patients, but it's yeah, at the moment we only have one collar, one module that's on the market.
Speaker 2:And from a size standpoint, do they come in whole sizes, half sizes or is it strictly like a full size?
Speaker 4:It's European full sizes. They go from 37 to 48.
Speaker 2:Okay, and out of my head, I don't know that.
Speaker 3:No, I think that's that's. That's quite right. Okay, you can check from our website, I think, which sizes are available yeah, on the website.
Speaker 4:If you go to us shop and there it shows all the us sizes.
Speaker 2:Oh, okay, great. Well, this is amazing. Thank you. It's great to see you guys and always a pleasure to talk about it, and I think it's a great product. I mean, I love the idea behind it, because anything that can make someone feel more what I would call normal that they don't look like they're you know you can't walk around wearing big VR glasses you know something that can help them, but it's not using a walker. For a lot of people, there's a stigma with using walkers. I think it's just that devices are important and people should use them when they need them, but I know there is a lot of blowback, especially for young onset patients. They don't want to be using a walker and this may be a great opportunity for someone that is having gait issues that's a YOPD that certainly may find this to be something that could really help them.
Speaker 1:Right, and the fact that you can fly in stealth mode is really attractive.
Speaker 2:Yeah, absolutely.
Speaker 3:I mean, I think this is also like what really motivates our team and what keeps us working hard. You know, sometimes it's really little things in life. I mean, we have patients who were not able to enter their kitchen, get a coffee and go out. With that. It's very difficult for them. It's a challenge to just carry that outside the I mean pass through the doorway and go to their living room. And when we see that, you know they can do it again with the help of the shoes. You know that that's kind of yeah, that just keeps us kind of, and this is such a big motivation for all our team. So that's important and I think the quality of life is really important and I think a lot of patients have issues with that and I think if we can change it in a positive way a little bit, that's a big goal for everyone.
Speaker 2:It's so important I mean, that is the key is to be able to live your life and live it well and be able to do the things that you love to do in the best way possible and safe way possible. I think that's the other thing is it's a safety factor too.
Speaker 1:Now, are there any limitations to the shoes, Like are they waterproof? Can you wear them in the rain or no?
Speaker 4:You can wear them in the rain. I mean, I would not walk an hour in pouring rain with them because there's still electronics in the shoes. I would also not put them in the washing machine.
Speaker 3:You shouldn't put them in the washing machine.
Speaker 4:That's not good. Don't dry them in the dryer, but if it's a little bit drizzling outside you can just wear them and now we're all jumping.
Speaker 2:Let's put it this way Now we're all jumping with the Grand Chill. All right, Well, that's pretty cool. I think it's great. Thank you so much. It's been amazing to hear more about it and to see how you've grown and you're really breaking into the US now, which I think is wonderful. You've made a lot of progress in the last this year. It's really this year, in 2024. You've made a lot of progress in the last this year. It's really this year, in 2024. You've made progress here.
Speaker 4:We're still making always progress and we listen also a lot to like patients, so we really value their feedback and also from like clinicians and based on their feedback, we add extra vibration modes or activity types. So also like, if patients have requests, just send them to us. We really listen and we work on what they need, because that helps us as well, right, that's fantastic.
Speaker 2:I'm so grateful to your genius in creating this product and making it happen for people with PD. We're really excited about it. Thank you so much for joining us.
Speaker 3:I mean thanks for giving us this opportunity to talk to you, I think, in this podcast and I think for all the listeners it's, I think, great to be here and talk about our solution. Yeah, they can reach out to us. I think we will probably provide some information. So, yeah, happy to. Also, if anyone is interested and if they are interested in these trial sessions or events in the US or other parts of the world we are active in Europe and US right now so just they can subscribe to our newsletter so they can get all the information. And for finding all these partners, clinics, they can check our website or, yeah, just they can contact us by email or other means. So, yeah, that's, we're happy to kind of request.
Speaker 2:Thank you, and just so you know, the company is Magnus M-A-G-N-E-S, because I think people in the US might want to spell it with an I-S. That way they will find it. It will be in the show notes, but just in case no one doesn't want to look in the show notes. Thank you so much.
Speaker 1:That's a wrap.
