Transforming Parkinson’s Care with Real-Time Data: Dr. Amanda Hare on StrivePD

In this special  episode, I sit down with Dr. Amanda Hare, Nurse Practitioner at Rune Labs, whose journey from the neurology ICU to digital health innovation offers powerful insights for the Parkinson’s community. We explore how her frontline experience shaped her understanding of patient care and how that perspective now fuels her work with the groundbreaking StrivePD app.

Dr. Hare walks us through the app’s capabilities—from tracking tremors and dyskinesia in real time to monitoring non-motor symptoms, setting medication reminders, and journaling emotional well-being. We discuss how this data can be shared with clinicians to create more personalized, focused treatment plans, and how the paid service, StrivePD Guardian, is working toward insurance approval to make this tool more accessible.

We also dive into Rune Labs’ exciting collaboration with the Parkinson’s Foundation, combining the PD GENEration genetic testing program with StrivePD to advance research and care. Finally, we look ahead to the future of Parkinson’s therapies and the promising efforts to slow disease progression.

🧠 Whether you're living with Parkinson’s, caring for someone who is, or simply passionate about innovation in healthcare, this episode is packed with insights and hope.

💡 Calls to Action:

• Subscribe to the FREE monthly newsletter and explore articles and resources at LiveParkinsons.com
• If this podcast has helped you and you'd like to support the mission, consider donating at ko-fi.com/liveparkinsons
• Want to learn more about my personal journey and the strategies I use? Grab a copy of my book Spectacular Life: 4 Essential Strategies for Living with Parkinson’s—available now on Amazon.

#LiveParkinsons, #StrivePD, #RuneLabs, #PDGENEration, #ParkinsonsCare, #DigitalHealth, #NeuroTech, #TremorTracking, #NonMotorSymptoms

Chapters

• 0:00 Introduction to Dr. Amanda Hare
• 2:15 From Neuro ICU to Parkinson's Care
• 8:21 Understanding Rune Labs and StrivePD
• 13:30 How StrivePD Tracks Symptoms and Exercise
• 19:20 StrivePD Guardian and Healthcare Benefits
• 25:15 Genetic Testing and PD Generation Partnership
• 31:05 Getting Started with Digital Health Tools
• 38:20 The Future of Parkinson's Treatment

Transcript

SPEAKER_00: 0:12

Hello, and welcome to Live Parkinson's Live an Exceptional Life. I'm your host, Chris Kustenbauter, and I've been living an exceptional life with Parkinson's for the past 15 years. And the mission of this podcast is to help as many people as possible living with Parkinson's to lead a great quality of life. All right, and today I'm thrilled to welcome Dr. Amanda Hare, a doctor and nurse practitioner, a highly respected nurse practitioner and clinical operations manager at Rune Labs, where she also serves as the medical science liaison. Amanda brings nearly two decades of experience in neurology with a deep specialization in movement disorders, particularly Parkinson's disease. Her career journey began at bedside in a level one trauma center and neuroICU before earning her doctorate of nursing practice in adult gerontology. Amanda went on to work in private neurology clinics and centers of excellence, where she became a trusted expert in advanced Parkinson's care, managing deep brain stimulation programming, Botox treatments, complex medical regimens, and innovative therapies like duopa pump titration. Now at Rune Labs, Amanda is helping bridge the gap between patient and clinician through cutting-edge healthcare technology. She's passionate about empowering people with Parkinson's to better understand and manage their symptoms, and about equipping clinicians with the tools they need to deliver more personalized, effective care. Amanda's work is driven by a simple but powerful message to improve quality of life for those living with Parkinson's and to bring hope and clarity to the condition that can often feel overwhelming. No, I can't wait to dive into her insights on the future of Parkinson's care and the role of technology in neurology and the human stories behind her work. Amanda, welcome to the show.

SPEAKER_01: 1:55

Thank you so much. That was a wonderful introduction.

SPEAKER_00: 2:01

Well, I thought I'd start out by asking do you spent eight years in uh neuro ICU caring for stroke and brain injury patients, correct?

SPEAKER_01: 2:10

I did, I did.

SPEAKER_00: 2:12

Okay, so so how did that bedside experience shape your understanding of the different neurological conditions?

SPEAKER_01: 2:19

Yeah. Wow, it was an experience as a 21-year-old, you know, being freshly out of nursing school. It was a lot. It was very overwhelming. It was a sink or swim kind of situation. What I saw was the most, you know, complex and devastating injuries to people. And, you know, a lot of times I was more talking with the families than the patient because the patient had such severe brain injury, you know, they were on a ventilator or couldn't respond themselves. So even though I was taking care of that whole patient, most of my communication was with the family. And, you know, it is a shock to everyone when their loved one is in the ICU. So what I really took out of that experience is, you know, it's not just one single symptom or one single thing that happened. It was a, you know, multitude of things leading up to why that person had a brain aneurysm that ruptured or why that person had a stroke. You know, there were things that could have been done years ago that maybe would have changed the outcome. So, you know, it gave me such a deep empathy for these families who were navigating, you know, a complex health system that we live in today. And so I think that kind of really inspired me to learn more about the brain. It's one of the organs that we just don't know a lot about. And so I think that that's where I really started to be interested in the brain and try to, you know, dig deeper. And so I think that's started my love for Parkinson's, although I didn't know that at the time.

SPEAKER_00: 3:59

Okay. So then you went from nursing and then you went on to get your nurse practitioners, doctorate in nurse practitioner in adult gerontology. What made you decide to do that?

SPEAKER_01: 4:10

Yeah, so when I was in ICU, the head, the director, the interventionalist who ran the ICU was a huge nurse advocate. Um, he knew that the nurses were at the bedside with the patients 24-7. Um, and so traditionally, when you do rounds on patients, the resident, who is a doctor in training who's graduated med school, presents on the patient and kind of runs over the plan for the day. That's not how we did it in NeuroICU. Dr. Shalila was always wanting the nurse to present. So we would go from each system, respiratory, cardiac, um, and the nurse would present. So it gave me this autonomy to really know my patient, to understand and to plan ahead. You know, if we thought that the patient was, you know, their fever was trending in an upward direction, I would mention that to say, you know, yesterday there they didn't have a temperature. Today it's trending up. We may need to get blood cultures. So it was something that I was presenting to the team. And, you know, I thought, well, if I'm presenting all this information and, you know, we're all talking and collaborating in the in these rounds and the questions that are being asked, I know the answer to. So I thought, how how can I impact more patients and maybe get to them before they end up in the ICU? Um, and that's what drove me back to getting my advanced degree.

SPEAKER_00: 5:42

Okay, great. So you went from neural ICU to now you're up like Parkinson's. How what what caused you to take that leap?

SPEAKER_01: 5:52

Yeah, so I decided to stay in neurology. Again, it was just something I fell in love with. The brain is is again just very complex and and we don't understand a lot of it. So I decided to stay in neurology. I actually had a slight move for my husband's career and went on to a general neurology practice. And, you know, I did migraine management and seizure management and memory and thinking troubles. And I remember having these Parkinson's patients. And these to me were the hardest patients to manage. I didn't know, you know, there wasn't a protocol or algorithm for migraine. I knew three medicines that they had to fail before they went on to Botox or seizure management was pretty algorithmic. Parkinson's did not fall under that. And so I remember seeing these Parkinson's patients and thinking, whoa, like this is a really complex disease. I don't know a lot about it. It sounds like it's not a one size fits all treatment. And so when I was moving back to Charleston, there was a position at MUSC in the Center of Excellence for Movement Disorders for a nurse practitioner. And I thought, oh, that's really gonna be a challenge. You know, I don't know if I'm cut out for that. Um and I applied, got the job, and immediately I was with seven movement disorder specialists who took me under their wing, taught me everything I know about Parkinson's. And I realized then, again, there is no protocol. All seven doctors had a different approach and a different outlook on how to treat Parkinson's patients. So it became an art. And I had to really take what I knew, look at the patient, and tailor that regimen to them. And so that is where I think my passion really sparked, where I knew that I was the one kind of creating this care plan for them that was very individualized and very specific to that person.

SPEAKER_00: 8:04

Okay. So you went from there then on to now you're at Rune Labs and you work with technology and and biomarkers. Can you tell me a little bit about what you do at at Rune Labs and and then maybe give people a little better understanding of what Rune Labs does?

SPEAKER_01: 8:21

Yeah, so Rune Labs is such an amazing company that has this great technology that most people have already, right? We all have iPhones, a lot of us have Apple Watches. A lot of my patients already have an Apple Watch because, you know, if they don't have their phone on them and they fall, they can still call someone or it alerts your emergency contact. And so when I found out about this company, I thought, wow, that's really amazing. But how is all of this data relevant? You know, how can this really help us in clinical practice? And so when I was talking with Rune, you know, they didn't have anybody on at the company that had ever taken care of a Parkinson's patient in a clinical role. And so I thought, wow, this could be a really amazing opportunity for me to not only still continue to help patients, but also to then get better data to clinicians to help them take better care of patients. And so that is kind of what I do in a nutshell at Rune. And what Rune is, is it is an app that has been developed by a Parkinson's patient herself called Strive PD. And Strive PD is free. It is only available on the iPhone and Apple Watch, but it is very specifically designed for people with Parkinson's. A lot of thought has gone into what's the most important, how can it be, you know, user-friendly, how can it add value and not be a burden where you're constantly fiddling with something that you feel like doesn't work. And so the Apple Watch already contains this FDA cleared movement disorder technology where we're able to track tremor and dynesia. And all you have to do is download Strive PD, keep your phone on you, wear your watch, and it automatically um measures your mobility, your tremor, your dyskinesia. Uh, and one of the things that a lot of patients like about it is it will remind you when to take your meds. So um, if you're wearing your watch, no matter where you are, it'll buzz and say, hey, it's time for you to take your carbidopa-levidopa. So you can think of it like a 24-7 kind of monitoring system for Parkinson's that goes back to the patient in very easy to read charts, um, so that they understand these longer-term patterns. You know, day to day is going to change. We know that not every day is gonna be the same, can be somewhat of a roller coaster ride for patients, even if they do the exact same thing one day, the next day is completely different. So this is such an easy way for patients to understand how they have done month to month, six months to six months. Um, and it's all in an easy monthly format of a report that synthesizes the data that they can share with their neurologist or or clinician.

SPEAKER_00: 11:26

Okay, so there's no electronic way to send that to your movement disorder specialist then?

SPEAKER_01: 11:32

There actually is. You can put in an email and that will automatically send the report to your clinicians. Yeah, they a lot of people do that so that they have it. But one thing that we we like to do is, you know, month to month is nice if you've made a change, right? So maybe you started a new medication, or you know, maybe you started a new exercise regimen, you did LSVT big. That month-to-month comparison might be great. But a lot of times patients only see their clinician three, four, six months intervals, right? So really having that longer term data is is, I think, the piece that clinicians really are going to get a lot of benefit out of.

SPEAKER_00: 12:13

So will it track exercise as well, then is part of that, or that's separate on the watch?

SPEAKER_01: 12:20

Yeah. So the Apple Health Kit is amazing in the sense that if you're wearing their the watch, say that you go to rock study boxing, or maybe you're just doing a nice outdoor walk. Um, if you forget to start your workout, the watch can, you know, analyze your heart rate and it says, Hey, are you doing an outdoor walking exercise? And you can say yes, and it will start recording. And everything from that Apple Health kit goes right into Strive PD. So you don't have to double log it. Because we know exercise is the most important piece when dealing with Parkinson. So all of that is tied together. And patients can really see this month, last month, I was really doing great on my exercise. My tremor is down, you know, my walking speed is better. And then, you know, maybe they get sick. COVID's going around, right? Flu season's coming up, and they're not able to exercise. And you can really see how much your symptoms impact you and you're not on that good exercise regimen.

SPEAKER_00: 13:24

Yeah, that's great to know because I I teach peddling for Parkinson's through the Davis Finney Foundation. And a lot of times I forget to start my because I have an Apple Watch and I forget to start it, and then I thought, oh, but it's it it does remind you. So that's that's nice. Now, and that's the other thing I hear. I've got a couple of uh friends that are movement disorder specialists, and that's one of the frustrations they have is when the patient will come into the office and they'll say, How are you doing? Good. It's they have they have difficulty trying to come up with a treatment plan if they're not if they don't have good information. And and this sounds like it's a great way to be able to track and share your information with your movement disorder specialist as well as be more planned when you go in there.

SPEAKER_01: 14:07

It does. It shifts the burden off of you know people living with Parkinson's. Who wants to track every symptom all the time, be constantly reminded? I mean, you look for this pattern and you're like, well, there is no pattern, and you get frustrated. You know, tracking fluctuations and symptoms over time passively, meaning you don't have to constantly interact, is so helpful. You know, it's not easy for me to remember what have I been doing in the last two weeks? How have I felt? If I don't mark down when I have a migraine, or if I don't mark down when I've had a back, you know, back pain, I don't remember. So I think we really rely on people with Parkinson's with ever-changing symptoms to tell us a lot of information when it's very difficult. So I love that the watch automatically collects the data and you know, we can really give that data back to not only the patient, but the clinician where they can have a more team-based approach at what is the best plan.

SPEAKER_00: 15:14

Yeah, and living with Parkinson's myself for such a long period of time that one of the things that that's I found important is to have your care partners involved. My wife always comes with me to the uh movement disorder specialist. I go down to the University of Maryland and and uh you know it's it's helpful to have a second set of ears. But it's also I think important to have uh to build a care team as well and get you know, well, you know this, but uh uh one of the things that I was just at a recent seminar and he talked about the iceberg where people will look at you and say, Well, you don't you don't seem to be your tremors don't seem bad, but you know, the the motor symptoms are just the tip of the iceberg, and then underneath the iceberg you have all the non-motor symptoms. And so it's nice to have a bit to be able to build a care team with that. And but one of the key pieces, of course, like you mentioned, is being prepared for your visit. And this the stripe PD really is a great way to do that.

SPEAKER_01: 16:09

Yeah, and we don't skimp on non-motor symptoms because you know, you're right, that really is the tremor isn't what bothers people. It's constipation, it's anxiety, it's apathy, just not being motivated, uh, not feeling interested in things. Your mood directly correlates to your physical symptoms. And so I always talk with patients about if your mood's not good, your physical symptoms aren't good. They're very much intertwined. And so we have, you know, quick charts that you can log, you know, smiley face to sad face to kind of rate how your day was, um, an area to type in some notes and just a quick log of, hey, at the end of the day, how have you been doing? Let's do a daily check-in. And, you know, we'll list the top 10 symptoms. And there's a lot of non-motor symptoms in there where, you know, at the end of the end of the day, people can reflect to say, you know, what's bothered me the most? Um, and you're right, a lot of times they are not the motor symptoms.

SPEAKER_00: 17:13

So from your perspective, uh, how do you get people that maybe are uncomfortable with technology to start using technology? Because I think really that's the wave of the future. I just did a podcast and they were talking about shirts that almost were like a skin type material that have sensors built in to measure different things. And so, you know, technology is really gonna be the, I think, the future of Parkinson's care. So how do you help families or how do you help people that maybe are uncomfortable with technology kind of start to transition?

SPEAKER_01: 17:46

Yeah, I think the the one, I don't want to say there's anything good about COVID coming about, but the one thing is we really had to learn telemedicine. People really had to learn how to communicate outside of the clinic. So I really tell people that if they have an iPhone, the worst part of it all is pairing the iPhone, pairing your watch to the iPhone. And we have patient specialists on our team who are amazing that can walk you through how to pair your iPhone and your watch and how to make sure that uh Stride PD is downloaded and all the permissions are turned on so that the data can start recording. So, my biggest thing is if you can't put on a watch, then this is maybe not the right technology for you. But if you can put on a watch and you know how to navigate your cell phone, this is a very easy application. You can interact with it as much or as little as you want. And the best benefit is if you don't interact with it at all, we are still getting when you log your medications, when your symptoms occur within those medications, and we get those long-term trends of how your walking imbalance is doing. So we really feel like it benefits most people. Even if you're not tech savvy, like you mentioned, your care partner may help you set up the watch or may help you remind to charge the watch. But we really find that even when people are 80 and they're like, I'm not tech savvy, they do really well with this. And we've seen just in the last year that there's two new pumps that have come out with Parkinson's medicines that, you know, patients are gonna be navigating. So we don't give enough credit to the Parkinson's community. I think that, you know, my my spiel is try it. If it's a burden, don't worry about it. You know, this is supposed to add value. And most people are super comfortable with the technology, which is the way we've designed it, and we want to ensure that it continues to be that way.

SPEAKER_00: 20:00

Okay. And then you also have the Stride PD Guardian, right? Which is a paid service. Can you explain that a little more? Because there's a lot of people that if there's extra benefit, they're they they don't have a problem subscribing to things as long as it's going to help them in in their daily lives.

SPEAKER_01: 20:16

Absolutely. So there is information through so many wonderful organizations, like you mentioned, Davis Spinney, Parkinson's Foundation, but it can be a little overwhelming. And so we have health coaches that are basically the biggest part of Stripe PD Guardian. And they're the most valuable part, that human connection. Technology is never going to replace your clinician, your care partner. I mean, these are all such important aspects of care. But what happens is, you know, people need to plan for that next appointment, right? Just like you mentioned, the clinician's gonna ask you how you're doing. You wanna give them a good, accurate picture of how you've been doing so they can really optimize regimen. We have a very well thought out, well put together kind of pre-visit planning that we look at all of the data over three to six months and we use a large language model, which is part of AI, you know, that's the buzzword, but AI and this large language model is really good at synthesizing all the symptoms, all the little notes that patients take in the app. And it brings up the top three symptoms that they should discuss with their doctor. So if they've been logging a lot of constipation, if they've been logging a lot of anxiety, maybe their medications, they're they're missing doses of medications, that's gonna get uh brought to that top priority so that they, when they get this pre-visit preparation, they know exactly what to talk about with their clinician because it's all the data they've been collecting on themselves for three, four, five months. So that even if they think, yeah, things are good, they read this report and say, okay, wow, yep, you're right. I really was constipated and I need to bring that up and I haven't, or you know, I am missing medications. And I'm, I don't love to tell my clinician that, but maybe there's another opportunity for a long-acting carbidopo-livodopa where I can not have to take medicine for five times a day, but only three times a day. Those are the things that optimize quality of life, that if you can translate that to your clinician, they can give you, you know, education on what is out there. So Guardian offers this pre-visit report, and then they also offer any time you need a coaching session in between appointments. So if a patient goes into their clinician and the clinician says, you know, I think LSVT Big or Rock Study Boxing is going to be a great therapy for you. Um, you know, go out and do it. And maybe they don't know where to start. Our health coaches can give them what how does LSVT big compare to rock steady boxing? What's similar? What are the differences? Um, you know, they can talk through that care plan and really give them that support on how to start or how to stay on track with what their clinician is recommending.

SPEAKER_00: 23:30

Okay. Is this something that insurance covers? Because I know people may be thinking, wow, this sounds great, but I don't wonder if my insurance covers it.

SPEAKER_01: 23:38

We are working on that. We really want healthcare plans to cover this. And we've done a huge project and pilot with Kaiser Permanente, where, you know, we are really trying to show the data that supports being on strike PD is going to keep people healthy out of the ER. It's going to keep them with a better quality of life. And it also is going to help their clinician with care inside the clinic. And we have shown with this cohort of patients that we can reduce clinic visits. I mean, I'm sorry, we can reduce clinic visits. People are doing so well, they don't have to go as often because Strive PD is really helping keep them motivated and on track. But we have reduced ER visits by 50% in patients that are using Strive PD. So this is the first kind of initiative that we're doing to prove to healthcare plans that this is something that insurance wants to cover because this can help the patient long term. And, you know, it's it's worth it 100% for them to be on Strive PD. So right now the answer is no, but that is very much something that we're focused on. But we do have um, you know, a subscription where you don't have to pay that full amount for the year up front. You can do it in monthly installments.

SPEAKER_00: 25:02

Okay, great. Well, 50% reduction in emergency room visits is incredible. So I mean that's something to be proud of. Well, let's switch gears a little bit. Correct?

SPEAKER_01: 25:16

With we are, yes.

SPEAKER_00: 25:18

So can you tell us a little bit about that? I know that the the Parkinson's Foundation has that PD uh Generation where they're they're doing uh blood and genetic testing. So how does how does your your collaboration work?

SPEAKER_01: 25:32

Yeah, so I think this is kind of again talking about that precision neurology, that individualized care. Um, so with the Parkinson's Foundation, you know, you can get free genetic testing and digital, you know, biomarkers with Stribe PD together, which, you know, we really haven't linked the two together. Um, so for people that have a genetic variant, you know, we think that's about 13%. But, you know, this is such a great collaboration with the Parkinson's Foundation because we can do more widespread genetic testing to make sure that, you know, is there more genetic related Parkinson's than we think? And then how do those people that have a genetic variant differ or should their treatment differ because they have LARC II or, you know, their GBA positive? So we can start to understand, you know, which subtypes of Parkinson's respond best to which treatments. We already know that there's tremor-predominant patients. There's 30% of patients with Parkinson's that don't have tremor at all. So I think this is a step towards how can we target therapies to people that have genetic variants? We can learn how they respond to these medications, and you know, we can think how can we diagnose early? How can we get better outcomes by using this precision neurology and taking this genetic, known genetic variant with symptom data and do something where maybe we change the way we we treat GBA patients, maybe we change the way LARC II patients are treated. And I'm I'm really excited because I think that Alzheimer's just had this amazing outcome in the last couple of years where they have a medicine that slows down the disease progression. And this medicine came out of a tiny little clinical trial for this rare genetic variant of Alzheimer's that we use now worldwide for anyone with Alzheimer's. Um, and so I think that's where this is leading. Parkinson's is gonna follow suit and we are gonna find that treatment that that slows down the progression.

SPEAKER_00: 27:58

Great. So is this a collaboration? Is it a clinical study that's being conducted that people can sign up for? Or is it just you're taking the the current people using Stride PD and then the Parkinson's Foundation is taking the PD uh generation uh group and then just you're blending that together?

SPEAKER_01: 28:18

Exactly. So we have over 15,000 patients on Stride PD, and so we reach out to our network and say, hey, this is a really amazing kind of collaboration that we're doing. Would you be interested in seeing if you have a genetic variant? And so they then sign up for PD Gene and sign the consent to have their data analyzed, which can be a little scary. You know, people are very hesitant to share their genetic information, and rightfully so. But we are very confident in the Parkinson's Foundation that this isn't being shared to third parties. This isn't being um, you know, further analyzed in some sort of way that a patient hasn't uh consented to. So we are finding that a lot of our patients and our network, a lot of our users are very interested in this. And so we just got this off the ground and you know, are starting with our first uh 50 people who have gotten a kit that they can do at home, which is really convenient, to send back and we can see who has that genetic uh information and and start looking at their data over time.

SPEAKER_00: 29:27

Yeah, I know I've done clinical studies myself and I always talk about the benefits, how it can help push Parkinson's understanding forward. So, how do how would people enroll in this if they were interested, besides downloading the Strive PD app? I mean, how would they, if they wanted to participate in this type of study, how would they go about doing that?

SPEAKER_01: 29:49

Yeah, so if you go to the Parkinson's Foundation website, they have all that information on the website. So, like you said, it's called PD Generation. Um, so you fill out A short survey and you sign a consent form, and there are different sites. So, you know, maybe the clinic that people are getting their care in are a site for the Parkinson's Foundation, or they can have it mailed to their home, and there's an easy blood collection system that is very user-friendly. We've had good success with that. Um, that they can participate. I'm I'm almost positive there's over 20,000 people who have already participated in PD genes. So would love to see that number double and triple.

SPEAKER_00: 30:34

How long is this study going to be going? Is this an ongoing thing or is it something that has a clinical endpoint?

SPEAKER_01: 30:41

Um, I believe it's been started since 2023 and does not have an end date. So I think we're um good to go for the next several years to continue to collect this data.

SPEAKER_00: 30:56

Okay, great. All right. So if if someone's interested in really getting into exploring all these digital health tools, what are some recommendations that you would have?

SPEAKER_01: 31:07

So the first recommendation is just downloading Strive PD. So going into your Apple App Store, just where you would download Solitaire or you know, a new app for something, it's in there, Strive PD. And if you don't have an Apple Watch, um, that's okay. You can still use your iPhone to record symptoms, to carry in your pocket so that it can get your mobility metrics, because the mobility metrics, a lot of them come from the phone. You want to wear it at waist level, so in your pocket or in a belt bag is the best. And if you want to get an Apple Watch, um you can get just the basic model, the SE model. You don't have to get the latest generation. Um, it all works on um Stribe PD, the SE model, and then start using it. Start just living life, wearing your watch and collecting data. Um, it's a very easy setup process. So even if you don't meet with one of our um health coaches or a patient specialist, you can go on stribepd.com and we have videos, tutorials, step-by-step instructions on how to set this up.

SPEAKER_00: 32:26

Okay. My next question was what should people expect in the first couple months when they're using stride PD?

SPEAKER_01: 32:32

Yeah, so I would say, like anything, when you get a new medication, you know, the first couple of days, maybe you don't feel good. Maybe that's coincidence, maybe not. You know, you really have to try something four, six, eight weeks before you start seeing that benefit. So I would say in the first couple months, collecting as much data as possible is the best. So, what I mean by that is wearing your watch at least six hours a day, wearing it to bed a couple times so you can track your sleep. Um, and then interacting with it at least once daily so that you can log. How have you been doing? How has your mood been? What has been the best part of your day? What's been the least favorable, favorable part of your day? There's a note section in the app that people use as like a journal. It's very cathartic. You kind of type out, I went out with my friends, I had such a good day, I didn't even notice any off time. Maybe another day, you know, you almost fell. You tripped over your rug and you almost fell, and that sent your anxiety through the roof. And so the more you log in the beginning, then you're gonna get those reports. So you're gonna find that first four-week report and then the next four-week report, and they're gonna give you that comparison. And so that's where you can really see, okay, this is what I understand happens as I'm collecting my data. This is what I get back, and this is all the information that it tells me. And you can use that as a toolbox. So you don't always use every tool in your toolbox for each day or each project. So use it to your advantage if something is really bothering you, or maybe your clinician has said, you've been talking to me about dizziness. I want you to check your blood pressure sitting and standing. Maybe doing that in the app and um, you know, logging your blood pressures can kind of show you day by day, month by month, correlations. Um, so I think there's a lot of benefit that you can get out of the app in the first couple months.

SPEAKER_00: 34:40

One of the things I thought what I heard you say was really interesting was being able to take notes in the app because I know a lot of times when I go to the movement disorder specialist, they always send you the the questionnaire in the mail. It's like, how many times have you phone in the last month or tripped, or how was your anxiety in the last seven, fourteen days? So at least that that way if you if you track that, it it'll really help you and help the the clinician to really hone in your treatment plan going forward.

SPEAKER_01: 35:08

So yeah, it's an easy way for you to look back and fill out that questionnaire as accurately as possible so that you're not missing anything. You know, it's easy to skip over constipation, but constipation is a huge issue in how your medications absorb in your stomach. And so if you're constipated and that GI motility uh is slowed down and things aren't moving well, your medicines aren't working well. So it's a huge piece of the puzzle to your symptoms, and you don't want to skip over that. So logging things that you think maybe are not super important could become important, and that correlation can be seen as you start collecting data and presenting this to your clinician. So you never know, even the smallest things can make the biggest difference.

SPEAKER_00: 35:57

Yeah, I know I I participate in that Michael J. Fox Foundation PPMI study, and uh every quarter, the first thing they ask her, what are the top five most bothersome symptoms? And a lot of times I sit there and think to myself, oh, but it using Stripe PD, that would definitely help me be able to really provide a lot better quality data than just trying to go off the top of my head about what's bothering me because I think we're all human and we tend to focus on things that that happened in the short term versus maybe a longer term trend, if that makes sense.

SPEAKER_01: 36:30

I agree. I agree. You know, you kind of brush off some small things, you know, we're we're moving forward, we're trying to stay positive, and that's wonderful. But, you know, ignoring some of the smaller symptoms could lead to bigger things. And, you know, Michael J. Fox Foundation is another wonderful organization that just invited me to go to Capitol Hill to advocate for Parkinson. So earlier this month, I was with a bunch of organizations like Michael J. Fox Foundation and PMD Alliance. There were over 270 of us on Capitol Hill, people living with Parkinson's, clinicians like myself, care partners who were talking with over 44 states in the US, the House and the Senate, really advocating for more research and more funding and all of the things that we need for Parkinson's patients. So definitely love Michael J. Fox.

SPEAKER_00: 37:28

Great. So just looking ahead, what excites you most about uh Parkinson's care?

SPEAKER_01: 37:35

I think, you know, really closing the gap between the clinic and real life and getting people better individualized treatment plans rather than a one size fits all. That just doesn't work. And I think with all of these new studies and new clinical trials and research and data, we are gonna find a cure. We might get a disease modifying therapy first, which will be a great step in the right direction. But I think that in my lifetime, we're gonna see a cure for Parkinson's. And I'm most excited about that.

SPEAKER_00: 38:11

That's great. Uh so if if you could leave the Lib Parkinson's audience with some suggestions or one important piece, what would you like to have them take away from the conversation that we had today?

SPEAKER_01: 38:28

That's a great question. I mean, Parkinson's is hard to navigate. It's cumbersome. It doesn't just affect one body part, it affects several different areas of your body. And, you know, you're not alone. You don't have to guess what's happening to your body. There's tools out there, of course, like Stride PD and other tools that can give you some clarity, that can monitor your symptoms, bring that back to your care team, get you on the right treatments. Maybe you need a long-acting medication, or maybe you'd be a great candidate for one of the pumps that are coming out. And ultimately say the things that maybe are small to you but could have a huge impact. You know, taking constipation out of the equation with medication or over-the-counter supplements is gonna improve your quality of life hugely. Um, so I think that Parkinson's can seem overwhelming, but taking it day by day, having good resources and good support is always gonna be something that leads you to better understandings, better communication, better treatment, better quality of life.

SPEAKER_00: 39:38

Okay. So if if people wanted to get more information, how would they, where should they go on Rune Labs and Stride PD?

SPEAKER_01: 39:46

Because some people like to do a little research before they would like to learn more about Rune Labs, you can visit their the website at rune labs.io. If you want to learn more about StrivePD, you can go to strivepd.com. If you have a question for us, you want to, you know, ask one of our patient specialists a question or you're not sure about something, you can email us at support at rune labs.

SPEAKER_00: 40:15

Great. Well, I know one of the things I always like to try to end with is to have some type of call to action. And I know one of the things that I'm gonna do uh when we're done here is to download Strive PD because it's it's definitely something I think that's gonna help me in the long run and help prepare for uh so but I would you know hopefully the audience will say, Wow, that's something I want to check out as well. But I really want to thank you for your time and and all the experience that you've shared with us today. It's been a great learning experience for me, and hopefully uh there's a lot of people out there listening that are gonna walk away and and say, I'm gonna take control of my uh my symptoms, I'm gonna take uh control of uh how I manage my Parkinson's and you know collect the data that they can share with their movement disorder specialist or neurologist to help them in the the future.

SPEAKER_01: 41:06

So I think that's wonderful. Yeah, thank you so much for having me. Um you know, we're here to help you in your journey, whatever that may be, big or small. Again, anything that can make that significant quality of life difference for you to feel better, do more exercise, take your medication on time. Strive PD can help with all of that. And even if you think you're not tech savvy, try it. There's no harm in trying it. Try it out, collect data for a little bit and see how much uh it impacts your your life.

SPEAKER_00: 41:40

Great. Well, I want to thank you so much for being on the program and for all you do for the Parkinson's community. You you do a uh a great service, and we we want to thank you for that. All right,