September 27, 2025 • 42 mins
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.
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- Subscribe to the FREE monthly newsletter and explore articles and resources at LiveParkinsons.com
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- 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
Disclaimer: This podcast is for educational purposes only is not intended to treat or diagnose Parkinson's Disease. Please ensure that you are following the treatment plan developed by your doctor. Please ensure before starting anything new you get approval from your doctor. The information being provided is based on my own personal experiences and does not guarantee that it will benefit everyone.
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
SPEAKER_00 (00:12):
Hello, and welcome to Live Parkinson's Live an
Exceptional Life.
I'm your host, ChrisKustenbauter, and I've been
living an exceptional life withParkinson's for the past 15
years.
And the mission of this podcastis to help as many people as
possible living with Parkinson'sto lead a great quality of life.
All right, and today I'mthrilled to welcome Dr.
Amanda Hare, a doctor and nursepractitioner, a highly respected
(00:32):
nurse practitioner and clinicaloperations manager at Rune Labs,
where she also serves as themedical science liaison.
Amanda brings nearly two decadesof experience in neurology with
a deep specialization inmovement disorders, particularly
Parkinson's disease.
Her career journey began atbedside in a level one trauma
center and neuroICU beforeearning her doctorate of nursing
(00:56):
practice in adult gerontology.
Amanda went on to work inprivate neurology clinics and
centers of excellence, where shebecame a trusted expert in
advanced Parkinson's care,managing deep brain stimulation
programming, Botox treatments,complex medical regimens, and
innovative therapies like duopapump titration.
(01:16):
Now at Rune Labs, Amanda ishelping bridge the gap between
patient and clinician throughcutting-edge healthcare
technology.
She's passionate aboutempowering people with
Parkinson's to better understandand manage their symptoms, and
about equipping clinicians withthe tools they need to deliver
more personalized, effectivecare.
Amanda's work is driven by asimple but powerful message to
(01:36):
improve quality of life forthose living with Parkinson's
and to bring hope and clarity tothe condition that can often
feel overwhelming.
No, I can't wait to dive intoher insights on the future of
Parkinson's care and the role oftechnology in neurology and the
human stories behind her work.
Amanda, welcome to the show.
SPEAKER_01 (01:55):
Thank you so much.
That was a wonderfulintroduction.
SPEAKER_00 (02:01):
Well, I thought I'd start out by asking do you spent
eight years in uh neuro ICUcaring for stroke and brain
injury patients, correct?
SPEAKER_01 (02:10):
I did, I did.
SPEAKER_00 (02:12):
Okay, so so how did that bedside experience shape
your understanding of thedifferent neurological
conditions?
SPEAKER_01 (02:19):
Yeah.
Wow, it was an experience as a21-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 ofsituation.
What I saw was the most, youknow, complex and devastating
injuries to people.
And, you know, a lot of times Iwas more talking with the
(02:41):
families than the patientbecause 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 careof that whole patient, most of
my communication was with thefamily.
And, you know, it is a shock toeveryone when their loved one is
in the ICU.
So what I really took out ofthat experience is, you know,
(03:05):
it's not just one single symptomor one single thing that
happened.
It was a, you know, multitude ofthings leading up to why that
person had a brain aneurysm thatruptured or why that person had
a stroke.
You know, there were things thatcould have been done years ago
that maybe would have changedthe outcome.
(03:26):
So, you know, it gave me such adeep empathy for these families
who were navigating, you know, acomplex health system that we
live in today.
And so I think that kind ofreally inspired me to learn more
about the brain.
It's one of the organs that wejust don't know a lot about.
And so I think that that's whereI really started to be
(03:49):
interested in the brain and tryto, you know, dig deeper.
And so I think that's started mylove for Parkinson's, although I
didn't know that at the time.
SPEAKER_00 (03:59):
Okay.
So then you went from nursingand then you went on to get your
nurse practitioners, doctoratein nurse practitioner in adult
gerontology.
What made you decide to do that?
SPEAKER_01 (04:10):
Yeah, so when I was in ICU, the head, the director,
the interventionalist who ranthe ICU was a huge nurse
advocate.
Um, he knew that the nurses wereat the bedside with the patients
24-7.
Um, and so traditionally, whenyou do rounds on patients, the
resident, who is a doctor intraining who's graduated med
(04:33):
school, presents on the patientand kind of runs over the plan
for the day.
That's not how we did it inNeuroICU.
Dr.
Shalila was always wanting thenurse to present.
So we would go from each system,respiratory, cardiac, um, and
the nurse would present.
So it gave me this autonomy toreally know my patient, to
(04:54):
understand and to plan ahead.
You know, if we thought that thepatient was, you know, their
fever was trending in an upwarddirection, I would mention that
to say, you know, yesterdaythere they didn't have a
temperature.
Today it's trending up.
We may need to get bloodcultures.
So it was something that I waspresenting to the team.
And, you know, I thought, well,if I'm presenting all this
(05:19):
information and, you know, we'reall talking and collaborating in
the in these rounds and thequestions that are being asked,
I know the answer to.
So I thought, how how can Iimpact more patients and maybe
get to them before they end upin the ICU?
Um, and that's what drove meback to getting my advanced
(05:41):
degree.
SPEAKER_00 (05:42):
Okay, great.
So you went from neural ICU tonow you're up like Parkinson's.
How what what caused you to takethat leap?
SPEAKER_01 (05:52):
Yeah, so I decided to stay in neurology.
Again, it was just something Ifell in love with.
The brain is is again just verycomplex and and we don't
understand a lot of it.
So I decided to stay inneurology.
I actually had a slight move formy husband's career and went on
to a general neurology practice.
(06:13):
And, you know, I did migrainemanagement and seizure
management and memory andthinking troubles.
And I remember having theseParkinson's patients.
And these to me were the hardestpatients to manage.
I didn't know, you know, therewasn't a protocol or algorithm
for migraine.
I knew three medicines that theyhad to fail before they went on
(06:35):
to Botox or seizure managementwas pretty algorithmic.
Parkinson's did not fall underthat.
And so I remember seeing theseParkinson's patients and
thinking, whoa, like this is areally complex disease.
I don't know a lot about it.
It sounds like it's not a onesize fits all treatment.
And so when I was moving back toCharleston, there was a position
(07:00):
at MUSC in the Center ofExcellence for Movement
Disorders for a nursepractitioner.
And I thought, oh, that's reallygonna be a challenge.
You know, I don't know if I'mcut out for that.
Um and I applied, got the job,and immediately I was with seven
movement disorder specialistswho took me under their wing,
(07:22):
taught me everything I knowabout Parkinson's.
And I realized then, again,there is no protocol.
All seven doctors had adifferent approach and a
different outlook on how totreat Parkinson's patients.
So it became an art.
And I had to really take what Iknew, look at the patient, and
(07:43):
tailor that regimen to them.
And so that is where I think mypassion really sparked, where I
knew that I was the one kind ofcreating this care plan for them
that was very individualized andvery specific to that person.
SPEAKER_00 (08:04):
Okay.
So you went from there then onto now you're at Rune Labs and
you work with technology and andbiomarkers.
Can you tell me a little bitabout what you do at at Rune
Labs and and then maybe givepeople a little better
understanding of what Rune Labsdoes?
SPEAKER_01 (08:21):
Yeah, so Rune Labs is such an amazing company that
has this great technology thatmost people have already, right?
We all have iPhones, a lot of ushave Apple Watches.
A lot of my patients alreadyhave an Apple Watch because, you
know, if they don't have theirphone on them and they fall,
they can still call someone orit alerts your emergency
(08:43):
contact.
And so when I found out aboutthis company, I thought, wow,
that's really amazing.
But how is all of this datarelevant?
You know, how can this reallyhelp us in clinical practice?
And so when I was talking withRune, you know, they didn't have
anybody on at the company thathad ever taken care of a
(09:04):
Parkinson's patient in aclinical role.
And so I thought, wow, thiscould be a really amazing
opportunity for me to not onlystill continue to help patients,
but also to then get better datato clinicians to help them take
better care of patients.
And so that is kind of what I doin a nutshell at Rune.
(09:25):
And what Rune is, is it is anapp that has been developed by a
Parkinson's patient herselfcalled Strive PD.
And Strive PD is free.
It is only available on theiPhone and Apple Watch, but it
is very specifically designedfor people with Parkinson's.
A lot of thought has gone intowhat's the most important, how
(09:48):
can it be, you know,user-friendly, how can it add
value and not be a burden whereyou're constantly fiddling with
something that you feel likedoesn't work.
And so the Apple Watch alreadycontains this FDA cleared
movement disorder technologywhere we're able to track tremor
and dynesia.
(10:08):
And all you have to do isdownload Strive PD, keep your
phone on you, wear your watch,and it automatically um measures
your mobility, your tremor, yourdyskinesia.
Uh, and one of the things that alot of patients like about it is
it will remind you when to takeyour meds.
So um, if you're wearing yourwatch, no matter where you are,
(10:31):
it'll buzz and say, hey, it'stime for you to take your
carbidopa-levidopa.
So you can think of it like a24-7 kind of monitoring system
for Parkinson's that goes backto the patient in very easy to
read charts, um, so that theyunderstand these longer-term
(10:52):
patterns.
You know, day to day is going tochange.
We know that not every day isgonna be the same, can be
somewhat of a roller coasterride 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 forpatients to understand how they
have done month to month, sixmonths to six months.
(11:14):
Um, and it's all in an easymonthly format of a report that
synthesizes the data that theycan share with their neurologist
or or clinician.
SPEAKER_00 (11:26):
Okay, so there's no electronic way to send that to
your movement disorderspecialist then?
SPEAKER_01 (11:32):
There actually is.
You can put in an email and thatwill automatically send the
report to your clinicians.
Yeah, they a lot of people dothat so that they have it.
But one thing that we we like todo is, you know, month to month
is nice if you've made a change,right?
So maybe you started a newmedication, or you know, maybe
(11:53):
you started a new exerciseregimen, you did LSVT big.
That month-to-month comparisonmight be great.
But a lot of times patients onlysee their clinician three, four,
six months intervals, right?
So really having that longerterm data is is, I think, the
piece that clinicians really aregoing 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 onthe watch?
SPEAKER_01 (12:20):
Yeah.
So the Apple Health Kit isamazing in the sense that if
you're wearing their the watch,say that you go to rock study
boxing, or maybe you're justdoing a nice outdoor walk.
Um, if you forget to start yourworkout, the watch can, you
know, analyze your heart rateand it says, Hey, are you doing
an outdoor walking exercise?
(12:41):
And you can say yes, and it willstart recording.
And everything from that AppleHealth kit goes right into
Strive PD.
So you don't have to double logit.
Because we know exercise is themost important piece when
dealing with Parkinson.
So all of that is tied together.
And patients can really see thismonth, last month, I was really
(13:03):
doing great on my exercise.
My tremor is down, you know, mywalking speed is better.
And then, you know, maybe theyget sick.
COVID's going around, right?
Flu season's coming up, andthey're not able to exercise.
And you can really see how muchyour symptoms impact you and
you're not on that good exerciseregimen.
SPEAKER_00 (13:24):
Yeah, that's great to know because I I teach
peddling for Parkinson's throughthe Davis Finney Foundation.
And a lot of times I forget tostart 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 thingI hear.
I've got a couple of uh friendsthat are movement disorder
specialists, and that's one ofthe frustrations they have is
(13:46):
when the patient will come intothe office and they'll say, How
are you doing?
Good.
It's they have they havedifficulty trying to come up
with a treatment plan if they'renot if they don't have good
information.
And and this sounds like it's agreat way to be able to track
and share your information withyour movement disorder
specialist as well as be moreplanned when you go in there.
SPEAKER_01 (14:07):
It does.
It shifts the burden off of youknow people living with
Parkinson's.
Who wants to track every symptomall the time, be constantly
reminded?
I mean, you look for thispattern and you're like, well,
there is no pattern, and you getfrustrated.
You know, tracking fluctuationsand symptoms over time
passively, meaning you don'thave to constantly interact, is
(14:29):
so helpful.
You know, it's not easy for meto remember what have I been
doing in the last two weeks?
How have I felt?
If I don't mark down when I havea migraine, or if I don't mark
down when I've had a back, youknow, back pain, I don't
remember.
So I think we really rely onpeople with Parkinson's with
(14:50):
ever-changing symptoms to tellus a lot of information when
it's very difficult.
So I love that the watchautomatically collects the data
and you know, we can really givethat data back to not only the
patient, but the clinician wherethey can have a more team-based
(15:11):
approach at what is the bestplan.
SPEAKER_00 (15:14):
Yeah, and living with Parkinson's myself for such
a long period of time that oneof the things that that's I
found important is to have yourcare partners involved.
My wife always comes with me tothe uh movement disorder
specialist.
I go down to the University ofMaryland and and uh you know
it's it's helpful to have asecond set of ears.
But it's also I think importantto have uh to build a care team
(15:37):
as well and get you know, well,you know this, but uh uh one of
the things that I was just at arecent seminar and he talked
about the iceberg where peoplewill look at you and say, Well,
you don't you don't seem to beyour tremors don't seem bad, but
you know, the the motor symptomsare just the tip of the iceberg,
and then underneath the icebergyou have all the non-motor
symptoms.
And so it's nice to have a bitto be able to build a care team
(15:59):
with that.
And but one of the key pieces,of course, like you mentioned,
is being prepared for yourvisit.
And this the stripe PD really isa 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 feelinginterested in things.
Your mood directly correlates toyour physical symptoms.
(16:32):
And so I always talk withpatients about if your mood's
not good, your physical symptomsaren't good.
They're very much intertwined.
And so we have, you know, quickcharts that you can log, you
know, smiley face to sad face tokind of rate how your day was,
um, an area to type in somenotes and just a quick log of,
(16:53):
hey, at the end of the day, howhave you been doing?
Let's do a daily check-in.
And, you know, we'll list thetop 10 symptoms.
And there's a lot of non-motorsymptoms in there where, you
know, at the end of the end ofthe day, people can reflect to
say, you know, what's botheredme the most?
Um, and you're right, a lot oftimes they are not the motor
symptoms.
SPEAKER_00 (17:13):
So from your perspective, uh, how do you get
people that maybe areuncomfortable with technology to
start using technology?
Because I think really that'sthe wave of the future.
I just did a podcast and theywere talking about shirts that
almost were like a skin typematerial that have sensors built
in to measure different things.
And so, you know, technology isreally gonna be the, I think,
(17:35):
the future of Parkinson's care.
So how do you help families orhow do you help people that
maybe are uncomfortable withtechnology 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 aboutCOVID coming about, but the one
thing is we really had to learntelemedicine.
People really had to learn howto communicate outside of the
clinic.
So I really tell people that ifthey have an iPhone, the worst
(18:06):
part of it all is pairing theiPhone, pairing your watch to
the iPhone.
And we have patient specialistson our team who are amazing that
can walk you through how to pairyour iPhone and your watch and
how to make sure that uh StridePD is downloaded and all the
permissions are turned on sothat the data can start
(18:27):
recording.
So, my biggest thing is if youcan't put on a watch, then this
is maybe not the righttechnology for you.
But if you can put on a watchand you know how to navigate
your cell phone, this is a veryeasy application.
You can interact with it as muchor as little as you want.
(18:49):
And the best benefit is if youdon't interact with it at all,
we are still getting when youlog your medications, when your
symptoms occur within thosemedications, and we get those
long-term trends of how yourwalking imbalance is doing.
So we really feel like itbenefits most people.
Even if you're not tech savvy,like you mentioned, your care
(19:12):
partner may help you set up thewatch or may help you remind to
charge the watch.
But we really find that evenwhen people are 80 and they're
like, I'm not tech savvy, theydo really well with this.
And we've seen just in the lastyear that there's two new pumps
that have come out withParkinson's medicines that, you
(19:35):
know, patients are gonna benavigating.
So we don't give enough creditto the Parkinson's community.
I think that, you know, my myspiel is try it.
If it's a burden, don't worryabout it.
You know, this is supposed toadd value.
And most people are supercomfortable with the technology,
which is the way we've designedit, and we want to ensure that
(19:57):
it continues to be that way.
SPEAKER_00 (20:00):
Okay.
And then you also have theStride PD Guardian, right?
Which is a paid service.
Can you explain that a littlemore?
Because there's a lot of peoplethat if there's extra benefit,
they're they they don't have aproblem subscribing to things as
long as it's going to help themin in their daily lives.
SPEAKER_01 (20:16):
Absolutely.
So there is information throughso many wonderful organizations,
like you mentioned, DavisSpinney, Parkinson's Foundation,
but it can be a littleoverwhelming.
And so we have health coachesthat are basically the biggest
part of Stripe PD Guardian.
(20:36):
And they're the most valuablepart, that human connection.
Technology is never going toreplace your clinician, your
care partner.
I mean, these are all suchimportant aspects of care.
But what happens is, you know,people need to plan for that
next appointment, right?
Just like you mentioned, theclinician's gonna ask you how
you're doing.
(20:57):
You wanna give them a good,accurate picture of how you've
been doing so they can reallyoptimize regimen.
We have a very well thought out,well put together kind of
pre-visit planning that we lookat all of the data over three to
six months and we use a largelanguage model, which is part of
(21:19):
AI, you know, that's thebuzzword, but AI and this large
language model is really good atsynthesizing all the symptoms,
all the little notes thatpatients take in the app.
And it brings up the top threesymptoms that they should
discuss with their doctor.
So if they've been logging a lotof constipation, if they've been
(21:40):
logging a lot of anxiety, maybetheir medications, they're
they're missing doses ofmedications, that's gonna get uh
brought to that top priority sothat they, when they get this
pre-visit preparation, they knowexactly what to talk about with
their clinician because it's allthe data they've been collecting
(22:01):
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 Ineed to bring that up and I
haven't, or you know, I ammissing medications.
And I'm, I don't love to tell myclinician that, but maybe
(22:21):
there's another opportunity fora long-acting carbidopo-livodopa
where I can not have to takemedicine for five times a day,
but only three times a day.
Those are the things thatoptimize quality of life, that
if you can translate that toyour clinician, they can give
you, you know, education on whatis out there.
(22:42):
So Guardian offers thispre-visit report, and then they
also offer any time you need acoaching session in between
appointments.
So if a patient goes into theirclinician and the clinician
says, you know, I think LSVT Bigor Rock Study Boxing is going to
(23:02):
be a great therapy for you.
Um, you know, go out and do it.
And maybe they don't know whereto start.
Our health coaches can give themwhat how does LSVT big compare
to rock steady boxing?
What's similar?
What are the differences?
Um, you know, they can talkthrough that care plan and
really give them that support onhow to start or how to stay on
(23:26):
track with what their clinicianis recommending.
SPEAKER_00 (23:30):
Okay.
Is this something that insurancecovers?
Because I know people may bethinking, wow, this sounds
great, but I don't wonder if myinsurance covers it.
SPEAKER_01 (23:38):
We are working on that.
We really want healthcare plansto cover this.
And we've done a huge projectand pilot with Kaiser
Permanente, where, you know, weare really trying to show the
data that supports being onstrike PD is going to keep
people healthy out of the ER.
It's going to keep them with abetter quality of life.
(24:00):
And it also is going to helptheir clinician with care inside
the clinic.
And we have shown with thiscohort of patients that we can
reduce clinic visits.
I mean, I'm sorry, we can reduceclinic visits.
People are doing so well, theydon't have to go as often
because Strive PD is reallyhelping keep them motivated and
(24:20):
on track.
But we have reduced ER visits by50% in patients that are using
Strive PD.
So this is the first kind ofinitiative that we're doing to
prove to healthcare plans thatthis is something that insurance
wants to cover because this canhelp the patient long term.
(24:40):
And, you know, it's it's worthit 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, asubscription where you don't
have to pay that full amount forthe year up front.
You can do it in monthlyinstallments.
SPEAKER_00 (25:02):
Okay, great.
Well, 50% reduction in emergencyroom visits is incredible.
So I mean that's something to beproud of.
Well, let's switch gears alittle 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'sFoundation has that PD uh
Generation where they're they'redoing uh blood and genetic
testing.
So how does how does your yourcollaboration 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'sFoundation, you know, you can
get free genetic testing anddigital, you know, biomarkers
with Stribe PD together, which,you know, we really haven't
linked the two together.
(25:54):
Um, so for people that have agenetic variant, you know, we
think that's about 13%.
But, you know, this is such agreat collaboration with the
Parkinson's Foundation becausewe can do more widespread
genetic testing to make surethat, you know, is there more
genetic related Parkinson's thanwe think?
And then how do those peoplethat have a genetic variant
(26:18):
differ or should their treatmentdiffer because they have LARC II
or, you know, their GBApositive?
So we can start to understand,you know, which subtypes of
Parkinson's respond best towhich treatments.
We already know that there'stremor-predominant patients.
(26:39):
There's 30% of patients withParkinson's that don't have
tremor at all.
So I think this is a steptowards how can we target
therapies to people that havegenetic variants?
We can learn how they respond tothese medications, and you know,
we can think how can we diagnoseearly?
(27:02):
How can we get better outcomesby using this precision
neurology and taking thisgenetic, known genetic variant
with symptom data and dosomething where maybe we change
the way we we treat GBApatients, maybe we change the
way LARC II patients aretreated.
(27:24):
And I'm I'm really excitedbecause I think that Alzheimer's
just had this amazing outcome inthe last couple of years where
they have a medicine that slowsdown the disease progression.
And this medicine came out of atiny little clinical trial for
this rare genetic variant ofAlzheimer's that we use now
(27:44):
worldwide for anyone withAlzheimer's.
Um, and so I think that's wherethis is leading.
Parkinson's is gonna follow suitand we are gonna find that
treatment that that slows downthe progression.
SPEAKER_00 (27:58):
Great.
So is this a collaboration?
Is it a clinical study that'sbeing conducted that people can
sign up for?
Or is it just you're taking thethe current people using Stride
PD and then the Parkinson'sFoundation is taking the PD uh
generation uh group and thenjust you're blending that
together?
SPEAKER_01 (28:18):
Exactly.
So we have over 15,000 patientson 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 inseeing if you have a genetic
variant?
And so they then sign up for PDGene and sign the consent to
have their data analyzed, whichcan be a little scary.
(28:41):
You know, people are veryhesitant to share their genetic
information, and rightfully so.
But we are very confident in theParkinson's Foundation that this
isn't being shared to thirdparties.
This isn't being um, you know,further analyzed in some sort of
way that a patient hasn't uhconsented to.
(29:02):
So we are finding that a lot ofour patients and our network, a
lot of our users are veryinterested in this.
And so we just got this off theground and you know, are
starting with our first uh 50people who have gotten a kit
that they can do at home, whichis really convenient, to send
back and we can see who has thatgenetic uh information and and
(29:24):
start looking at their data overtime.
SPEAKER_00 (29:27):
Yeah, I know I've done clinical studies myself and
I always talk about thebenefits, how it can help push
Parkinson's understandingforward.
So, how do how would peopleenroll in this if they were
interested, besides downloadingthe Strive PD app?
I mean, how would they, if theywanted to participate in this
type of study, how would they goabout doing that?
SPEAKER_01 (29:49):
Yeah, so if you go to the Parkinson's Foundation
website, they have all thatinformation on the website.
So, like you said, it's calledPD Generation.
Um, so you fill out A shortsurvey and you sign a consent
form, and there are differentsites.
So, you know, maybe the clinicthat people are getting their
care in are a site for theParkinson's Foundation, or they
(30:13):
can have it mailed to theirhome, and there's an easy blood
collection system that is veryuser-friendly.
We've had good success withthat.
Um, that they can participate.
I'm I'm almost positive there'sover 20,000 people who have
already participated in PDgenes.
So would love to see that numberdouble and triple.
SPEAKER_00 (30:34):
How long is this study going to be going?
Is this an ongoing thing or isit 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 gofor the next several years to
continue to collect this data.
SPEAKER_00 (30:56):
Okay, great.
All right.
So if if someone's interested inreally 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 AppStore, 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 AppleWatch, um, that's okay.
You can still use your iPhone torecord symptoms, to carry in
(31:32):
your pocket so that it can getyour mobility metrics, because
the mobility metrics, a lot ofthem come from the phone.
You want to wear it at waistlevel, so in your pocket or in a
belt bag is the best.
And if you want to get an AppleWatch, um you can get just the
basic model, the SE model.
You don't have to get the latestgeneration.
(31:54):
Um, it all works on um StribePD, the SE model, and then start
using it.
Start just living life, wearingyour watch and collecting data.
Um, it's a very easy setupprocess.
So even if you don't meet withone of our um health coaches or
a patient specialist, you can goon stribepd.com and we have
(32:20):
videos, tutorials, step-by-stepinstructions on how to set this
up.
SPEAKER_00 (32:26):
Okay.
My next question was what shouldpeople expect in the first
couple months when they're usingstride PD?
SPEAKER_01 (32:32):
Yeah, so I would say, like anything, when you get
a new medication, you know, thefirst couple of days, maybe you
don't feel good.
Maybe that's coincidence, maybenot.
You know, you really have to trysomething four, six, eight weeks
before you start seeing thatbenefit.
So I would say in the firstcouple months, collecting as
much data as possible is thebest.
(32:54):
So, what I mean by that iswearing your watch at least six
hours a day, wearing it to bed acouple times so you can track
your sleep.
Um, and then interacting with itat least once daily so that you
can log.
How have you been doing?
How has your mood been?
What has been the best part ofyour day?
(33:15):
What's been the least favorable,favorable part of your day?
There's a note section in theapp that people use as like a
journal.
It's very cathartic.
You kind of type out, I went outwith my friends, I had such a
good day, I didn't even noticeany off time.
Maybe another day, you know, youalmost fell.
You tripped over your rug andyou almost fell, and that sent
(33:36):
your anxiety through the roof.
And so the more you log in thebeginning, then you're gonna get
those reports.
So you're gonna find that firstfour-week report and then the
next four-week report, andthey're gonna give you that
comparison.
And so that's where you canreally see, okay, this is what I
understand happens as I'mcollecting my data.
(33:58):
This is what I get back, andthis is all the information that
it tells me.
And you can use that as atoolbox.
So you don't always use everytool in your toolbox for each
day or each project.
So use it to your advantage ifsomething is really bothering
you, or maybe your clinician hassaid, you've been talking to me
about dizziness.
(34:19):
I want you to check your bloodpressure sitting and standing.
Maybe doing that in the app andum, you know, logging your blood
pressures can kind of show youday by day, month by month,
correlations.
Um, so I think there's a lot ofbenefit that you can get out of
the app in the first couplemonths.
SPEAKER_00 (34:40):
One of the things I thought what I heard you say was
really interesting was beingable to take notes in the app
because I know a lot of timeswhen I go to the movement
disorder specialist, they alwayssend you the the questionnaire
in the mail.
It's like, how many times haveyou phone in the last month or
tripped, or how was your anxietyin the last seven, fourteen
days?
So at least that that way if youif you track that, it it'll
(35:01):
really help you and help the theclinician 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 questionnaireas accurately as possible so
that you're not missinganything.
You know, it's easy to skip overconstipation, but constipation
is a huge issue in how yourmedications absorb in your
stomach.
And so if you're constipated andthat GI motility uh is slowed
(35:30):
down and things aren't movingwell, your medicines aren't
working well.
So it's a huge piece of thepuzzle to your symptoms, and you
don't want to skip over that.
So logging things that you thinkmaybe are not super important
could become important, and thatcorrelation can be seen as you
start collecting data andpresenting this to your
(35:51):
clinician.
So you never know, even thesmallest things can make the
biggest difference.
SPEAKER_00 (35:57):
Yeah, I know I I participate in that Michael J.
Fox Foundation PPMI study, anduh every quarter, the first
thing they ask her, what are thetop five most bothersome
symptoms?
And a lot of times I sit thereand think to myself, oh, but it
using Stripe PD, that woulddefinitely help me be able to
really provide a lot betterquality data than just trying to
(36:18):
go off the top of my head aboutwhat's bothering me because I
think we're all human and wetend to focus on things that
that happened in the short termversus maybe a longer term
trend, if that makes sense.
SPEAKER_01 (36:30):
I agree.
I agree.
You know, you kind of brush offsome 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 ofthe smaller symptoms could lead
to bigger things.
And, you know, Michael J.
Fox Foundation is anotherwonderful organization that just
(36:50):
invited me to go to Capitol Hillto advocate for Parkinson.
So earlier this month, I waswith a bunch of organizations
like Michael J.
Fox Foundation and PMD Alliance.
There were over 270 of us onCapitol Hill, people living with
Parkinson's, clinicians likemyself, care partners who were
(37:11):
talking with over 44 states inthe US, the House and the
Senate, really advocating formore research and more funding
and all of the things that weneed for Parkinson's patients.
So definitely love Michael J.
Fox.
SPEAKER_00 (37:28):
Great.
So just looking ahead, whatexcites 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 andgetting people better
individualized treatment plansrather than a one size fits all.
That just doesn't work.
And I think with all of thesenew studies and new clinical
trials and research and data, weare gonna find a cure.
(37:58):
We might get a disease modifyingtherapy first, which will be a
great step in the rightdirection.
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 theLib Parkinson's audience with
some suggestions or oneimportant piece, what would you
like to have them take away fromthe conversation that we had
today?
SPEAKER_01 (38:28):
That's a great question.
I mean, Parkinson's is hard tonavigate.
It's cumbersome.
It doesn't just affect one bodypart, it affects several
different areas of your body.
And, you know, you're not alone.
You don't have to guess what'shappening to your body.
There's tools out there, ofcourse, like Stride PD and other
tools that can give you someclarity, that can monitor your
(38:50):
symptoms, bring that back toyour care team, get you on the
right treatments.
Maybe you need a long-actingmedication, or maybe you'd be a
great candidate for one of thepumps that are coming out.
And ultimately say the thingsthat maybe are small to you but
could have a huge impact.
You know, taking constipationout of the equation with
(39:11):
medication or over-the-countersupplements is gonna improve
your quality of life hugely.
Um, so I think that Parkinson'scan seem overwhelming, but
taking it day by day, havinggood resources and good support
is always gonna be somethingthat leads you to better
(39:32):
understandings, bettercommunication, better treatment,
better quality of life.
SPEAKER_00 (39:38):
Okay.
So if if people wanted to getmore information, how would
they, where should they go onRune Labs and Stride PD?
SPEAKER_01 (39:46):
Because some people like to do a little research
before they would like to learnmore about Rune Labs, you can
visit their the website at runelabs.io.
If you want to learn more aboutStrivePD, you can go to
strivepd.com.
If you have a question for us,you want to, you know, ask one
(40:06):
of our patient specialists aquestion or you're not sure
about something, you can emailus at support at rune labs.
SPEAKER_00 (40:15):
Great.
Well, I know one of the things Ialways like to try to end with
is to have some type of call toaction.
And I know one of the thingsthat I'm gonna do uh when we're
done here is to download StrivePD because it's it's definitely
something I think that's gonnahelp me in the long run and help
prepare for uh so but I wouldyou know hopefully the audience
will say, Wow, that's somethingI want to check out as well.
(40:37):
But I really want to thank youfor your time and and all the
experience that you've sharedwith us today.
It's been a great learningexperience for me, and hopefully
uh there's a lot of people outthere listening that are gonna
walk away and and say, I'm gonnatake control of my uh my
symptoms, I'm gonna take uhcontrol of uh how I manage my
(40:58):
Parkinson's and you know collectthe data that they can share
with their movement disorderspecialist or neurologist to
help them in the the future.
SPEAKER_01 (41:06):
So I think that's wonderful.
Yeah, thank you so much forhaving me.
Um you know, we're here to helpyou in your journey, whatever
that may be, big or small.
Again, anything that can makethat significant quality of life
difference for you to feelbetter, do more exercise, take
your medication on time.
(41:26):
Strive PD can help with all ofthat.
And even if you think you're nottech savvy, try it.
There's no harm in trying it.
Try it out, collect data for alittle bit and see how much uh
it impacts your your life.
SPEAKER_00 (41:40):
Great.
Well, I want to thank you somuch for being on the program
and for all you do for theParkinson's community.
You you do a uh a great service,and we we want to thank you for
that.
All right,
Hello, and welcome to Live Parkinson's Live an
Exceptional Life.
I'm your host, ChrisKustenbauter, and I've been
living an exceptional life withParkinson's for the past 15
years.
And the mission of this podcastis to help as many people as
possible living with Parkinson'sto lead a great quality of life.
All right, and today I'mthrilled to welcome Dr.
Amanda Hare, a doctor and nursepractitioner, a highly respected
(00:32):
nurse practitioner and clinicaloperations manager at Rune Labs,
where she also serves as themedical science liaison.
Amanda brings nearly two decadesof experience in neurology with
a deep specialization inmovement disorders, particularly
Parkinson's disease.
Her career journey began atbedside in a level one trauma
center and neuroICU beforeearning her doctorate of nursing
(00:56):
practice in adult gerontology.
Amanda went on to work inprivate neurology clinics and
centers of excellence, where shebecame a trusted expert in
advanced Parkinson's care,managing deep brain stimulation
programming, Botox treatments,complex medical regimens, and
innovative therapies like duopapump titration.
(01:16):
Now at Rune Labs, Amanda ishelping bridge the gap between
patient and clinician throughcutting-edge healthcare
technology.
She's passionate aboutempowering people with
Parkinson's to better understandand manage their symptoms, and
about equipping clinicians withthe tools they need to deliver
more personalized, effectivecare.
Amanda's work is driven by asimple but powerful message to
(01:36):
improve quality of life forthose living with Parkinson's
and to bring hope and clarity tothe condition that can often
feel overwhelming.
No, I can't wait to dive intoher insights on the future of
Parkinson's care and the role oftechnology in neurology and the
human stories behind her work.
Amanda, welcome to the show.
SPEAKER_01 (01:55):
Thank you so much.
That was a wonderfulintroduction.
SPEAKER_00 (02:01):
Well, I thought I'd start out by asking do you spent
eight years in uh neuro ICUcaring for stroke and brain
injury patients, correct?
SPEAKER_01 (02:10):
I did, I did.
SPEAKER_00 (02:12):
Okay, so so how did that bedside experience shape
your understanding of thedifferent neurological
conditions?
SPEAKER_01 (02:19):
Yeah.
Wow, it was an experience as a21-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 ofsituation.
What I saw was the most, youknow, complex and devastating
injuries to people.
And, you know, a lot of times Iwas more talking with the
(02:41):
families than the patientbecause 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 careof that whole patient, most of
my communication was with thefamily.
And, you know, it is a shock toeveryone when their loved one is
in the ICU.
So what I really took out ofthat experience is, you know,
(03:05):
it's not just one single symptomor one single thing that
happened.
It was a, you know, multitude ofthings leading up to why that
person had a brain aneurysm thatruptured or why that person had
a stroke.
You know, there were things thatcould have been done years ago
that maybe would have changedthe outcome.
(03:26):
So, you know, it gave me such adeep empathy for these families
who were navigating, you know, acomplex health system that we
live in today.
And so I think that kind ofreally inspired me to learn more
about the brain.
It's one of the organs that wejust don't know a lot about.
And so I think that that's whereI really started to be
(03:49):
interested in the brain and tryto, you know, dig deeper.
And so I think that's started mylove for Parkinson's, although I
didn't know that at the time.
SPEAKER_00 (03:59):
Okay.
So then you went from nursingand then you went on to get your
nurse practitioners, doctoratein nurse practitioner in adult
gerontology.
What made you decide to do that?
SPEAKER_01 (04:10):
Yeah, so when I was in ICU, the head, the director,
the interventionalist who ranthe ICU was a huge nurse
advocate.
Um, he knew that the nurses wereat the bedside with the patients
24-7.
Um, and so traditionally, whenyou do rounds on patients, the
resident, who is a doctor intraining who's graduated med
(04:33):
school, presents on the patientand kind of runs over the plan
for the day.
That's not how we did it inNeuroICU.
Dr.
Shalila was always wanting thenurse to present.
So we would go from each system,respiratory, cardiac, um, and
the nurse would present.
So it gave me this autonomy toreally know my patient, to
(04:54):
understand and to plan ahead.
You know, if we thought that thepatient was, you know, their
fever was trending in an upwarddirection, I would mention that
to say, you know, yesterdaythere they didn't have a
temperature.
Today it's trending up.
We may need to get bloodcultures.
So it was something that I waspresenting to the team.
And, you know, I thought, well,if I'm presenting all this
(05:19):
information and, you know, we'reall talking and collaborating in
the in these rounds and thequestions that are being asked,
I know the answer to.
So I thought, how how can Iimpact more patients and maybe
get to them before they end upin the ICU?
Um, and that's what drove meback to getting my advanced
(05:41):
degree.
SPEAKER_00 (05:42):
Okay, great.
So you went from neural ICU tonow you're up like Parkinson's.
How what what caused you to takethat leap?
SPEAKER_01 (05:52):
Yeah, so I decided to stay in neurology.
Again, it was just something Ifell in love with.
The brain is is again just verycomplex and and we don't
understand a lot of it.
So I decided to stay inneurology.
I actually had a slight move formy husband's career and went on
to a general neurology practice.
(06:13):
And, you know, I did migrainemanagement and seizure
management and memory andthinking troubles.
And I remember having theseParkinson's patients.
And these to me were the hardestpatients to manage.
I didn't know, you know, therewasn't a protocol or algorithm
for migraine.
I knew three medicines that theyhad to fail before they went on
(06:35):
to Botox or seizure managementwas pretty algorithmic.
Parkinson's did not fall underthat.
And so I remember seeing theseParkinson's patients and
thinking, whoa, like this is areally complex disease.
I don't know a lot about it.
It sounds like it's not a onesize fits all treatment.
And so when I was moving back toCharleston, there was a position
(07:00):
at MUSC in the Center ofExcellence for Movement
Disorders for a nursepractitioner.
And I thought, oh, that's reallygonna be a challenge.
You know, I don't know if I'mcut out for that.
Um and I applied, got the job,and immediately I was with seven
movement disorder specialistswho took me under their wing,
(07:22):
taught me everything I knowabout Parkinson's.
And I realized then, again,there is no protocol.
All seven doctors had adifferent approach and a
different outlook on how totreat Parkinson's patients.
So it became an art.
And I had to really take what Iknew, look at the patient, and
(07:43):
tailor that regimen to them.
And so that is where I think mypassion really sparked, where I
knew that I was the one kind ofcreating this care plan for them
that was very individualized andvery specific to that person.
SPEAKER_00 (08:04):
Okay.
So you went from there then onto now you're at Rune Labs and
you work with technology and andbiomarkers.
Can you tell me a little bitabout what you do at at Rune
Labs and and then maybe givepeople a little better
understanding of what Rune Labsdoes?
SPEAKER_01 (08:21):
Yeah, so Rune Labs is such an amazing company that
has this great technology thatmost people have already, right?
We all have iPhones, a lot of ushave Apple Watches.
A lot of my patients alreadyhave an Apple Watch because, you
know, if they don't have theirphone on them and they fall,
they can still call someone orit alerts your emergency
(08:43):
contact.
And so when I found out aboutthis company, I thought, wow,
that's really amazing.
But how is all of this datarelevant?
You know, how can this reallyhelp us in clinical practice?
And so when I was talking withRune, you know, they didn't have
anybody on at the company thathad ever taken care of a
(09:04):
Parkinson's patient in aclinical role.
And so I thought, wow, thiscould be a really amazing
opportunity for me to not onlystill continue to help patients,
but also to then get better datato clinicians to help them take
better care of patients.
And so that is kind of what I doin a nutshell at Rune.
(09:25):
And what Rune is, is it is anapp that has been developed by a
Parkinson's patient herselfcalled Strive PD.
And Strive PD is free.
It is only available on theiPhone and Apple Watch, but it
is very specifically designedfor people with Parkinson's.
A lot of thought has gone intowhat's the most important, how
(09:48):
can it be, you know,user-friendly, how can it add
value and not be a burden whereyou're constantly fiddling with
something that you feel likedoesn't work.
And so the Apple Watch alreadycontains this FDA cleared
movement disorder technologywhere we're able to track tremor
and dynesia.
(10:08):
And all you have to do isdownload Strive PD, keep your
phone on you, wear your watch,and it automatically um measures
your mobility, your tremor, yourdyskinesia.
Uh, and one of the things that alot of patients like about it is
it will remind you when to takeyour meds.
So um, if you're wearing yourwatch, no matter where you are,
(10:31):
it'll buzz and say, hey, it'stime for you to take your
carbidopa-levidopa.
So you can think of it like a24-7 kind of monitoring system
for Parkinson's that goes backto the patient in very easy to
read charts, um, so that theyunderstand these longer-term
(10:52):
patterns.
You know, day to day is going tochange.
We know that not every day isgonna be the same, can be
somewhat of a roller coasterride 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 forpatients to understand how they
have done month to month, sixmonths to six months.
(11:14):
Um, and it's all in an easymonthly format of a report that
synthesizes the data that theycan share with their neurologist
or or clinician.
SPEAKER_00 (11:26):
Okay, so there's no electronic way to send that to
your movement disorderspecialist then?
SPEAKER_01 (11:32):
There actually is.
You can put in an email and thatwill automatically send the
report to your clinicians.
Yeah, they a lot of people dothat so that they have it.
But one thing that we we like todo is, you know, month to month
is nice if you've made a change,right?
So maybe you started a newmedication, or you know, maybe
(11:53):
you started a new exerciseregimen, you did LSVT big.
That month-to-month comparisonmight be great.
But a lot of times patients onlysee their clinician three, four,
six months intervals, right?
So really having that longerterm data is is, I think, the
piece that clinicians really aregoing 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 onthe watch?
SPEAKER_01 (12:20):
Yeah.
So the Apple Health Kit isamazing in the sense that if
you're wearing their the watch,say that you go to rock study
boxing, or maybe you're justdoing a nice outdoor walk.
Um, if you forget to start yourworkout, the watch can, you
know, analyze your heart rateand it says, Hey, are you doing
an outdoor walking exercise?
(12:41):
And you can say yes, and it willstart recording.
And everything from that AppleHealth kit goes right into
Strive PD.
So you don't have to double logit.
Because we know exercise is themost important piece when
dealing with Parkinson.
So all of that is tied together.
And patients can really see thismonth, last month, I was really
(13:03):
doing great on my exercise.
My tremor is down, you know, mywalking speed is better.
And then, you know, maybe theyget sick.
COVID's going around, right?
Flu season's coming up, andthey're not able to exercise.
And you can really see how muchyour symptoms impact you and
you're not on that good exerciseregimen.
SPEAKER_00 (13:24):
Yeah, that's great to know because I I teach
peddling for Parkinson's throughthe Davis Finney Foundation.
And a lot of times I forget tostart 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 thingI hear.
I've got a couple of uh friendsthat are movement disorder
specialists, and that's one ofthe frustrations they have is
(13:46):
when the patient will come intothe office and they'll say, How
are you doing?
Good.
It's they have they havedifficulty trying to come up
with a treatment plan if they'renot if they don't have good
information.
And and this sounds like it's agreat way to be able to track
and share your information withyour movement disorder
specialist as well as be moreplanned when you go in there.
SPEAKER_01 (14:07):
It does.
It shifts the burden off of youknow people living with
Parkinson's.
Who wants to track every symptomall the time, be constantly
reminded?
I mean, you look for thispattern and you're like, well,
there is no pattern, and you getfrustrated.
You know, tracking fluctuationsand symptoms over time
passively, meaning you don'thave to constantly interact, is
(14:29):
so helpful.
You know, it's not easy for meto remember what have I been
doing in the last two weeks?
How have I felt?
If I don't mark down when I havea migraine, or if I don't mark
down when I've had a back, youknow, back pain, I don't
remember.
So I think we really rely onpeople with Parkinson's with
(14:50):
ever-changing symptoms to tellus a lot of information when
it's very difficult.
So I love that the watchautomatically collects the data
and you know, we can really givethat data back to not only the
patient, but the clinician wherethey can have a more team-based
(15:11):
approach at what is the bestplan.
SPEAKER_00 (15:14):
Yeah, and living with Parkinson's myself for such
a long period of time that oneof the things that that's I
found important is to have yourcare partners involved.
My wife always comes with me tothe uh movement disorder
specialist.
I go down to the University ofMaryland and and uh you know
it's it's helpful to have asecond set of ears.
But it's also I think importantto have uh to build a care team
(15:37):
as well and get you know, well,you know this, but uh uh one of
the things that I was just at arecent seminar and he talked
about the iceberg where peoplewill look at you and say, Well,
you don't you don't seem to beyour tremors don't seem bad, but
you know, the the motor symptomsare just the tip of the iceberg,
and then underneath the icebergyou have all the non-motor
symptoms.
And so it's nice to have a bitto be able to build a care team
(15:59):
with that.
And but one of the key pieces,of course, like you mentioned,
is being prepared for yourvisit.
And this the stripe PD really isa 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 feelinginterested in things.
Your mood directly correlates toyour physical symptoms.
(16:32):
And so I always talk withpatients about if your mood's
not good, your physical symptomsaren't good.
They're very much intertwined.
And so we have, you know, quickcharts that you can log, you
know, smiley face to sad face tokind of rate how your day was,
um, an area to type in somenotes and just a quick log of,
(16:53):
hey, at the end of the day, howhave you been doing?
Let's do a daily check-in.
And, you know, we'll list thetop 10 symptoms.
And there's a lot of non-motorsymptoms in there where, you
know, at the end of the end ofthe day, people can reflect to
say, you know, what's botheredme the most?
Um, and you're right, a lot oftimes they are not the motor
symptoms.
SPEAKER_00 (17:13):
So from your perspective, uh, how do you get
people that maybe areuncomfortable with technology to
start using technology?
Because I think really that'sthe wave of the future.
I just did a podcast and theywere talking about shirts that
almost were like a skin typematerial that have sensors built
in to measure different things.
And so, you know, technology isreally gonna be the, I think,
(17:35):
the future of Parkinson's care.
So how do you help families orhow do you help people that
maybe are uncomfortable withtechnology 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 aboutCOVID coming about, but the one
thing is we really had to learntelemedicine.
People really had to learn howto communicate outside of the
clinic.
So I really tell people that ifthey have an iPhone, the worst
(18:06):
part of it all is pairing theiPhone, pairing your watch to
the iPhone.
And we have patient specialistson our team who are amazing that
can walk you through how to pairyour iPhone and your watch and
how to make sure that uh StridePD is downloaded and all the
permissions are turned on sothat the data can start
(18:27):
recording.
So, my biggest thing is if youcan't put on a watch, then this
is maybe not the righttechnology for you.
But if you can put on a watchand you know how to navigate
your cell phone, this is a veryeasy application.
You can interact with it as muchor as little as you want.
(18:49):
And the best benefit is if youdon't interact with it at all,
we are still getting when youlog your medications, when your
symptoms occur within thosemedications, and we get those
long-term trends of how yourwalking imbalance is doing.
So we really feel like itbenefits most people.
Even if you're not tech savvy,like you mentioned, your care
(19:12):
partner may help you set up thewatch or may help you remind to
charge the watch.
But we really find that evenwhen people are 80 and they're
like, I'm not tech savvy, theydo really well with this.
And we've seen just in the lastyear that there's two new pumps
that have come out withParkinson's medicines that, you
(19:35):
know, patients are gonna benavigating.
So we don't give enough creditto the Parkinson's community.
I think that, you know, my myspiel is try it.
If it's a burden, don't worryabout it.
You know, this is supposed toadd value.
And most people are supercomfortable with the technology,
which is the way we've designedit, and we want to ensure that
(19:57):
it continues to be that way.
SPEAKER_00 (20:00):
Okay.
And then you also have theStride PD Guardian, right?
Which is a paid service.
Can you explain that a littlemore?
Because there's a lot of peoplethat if there's extra benefit,
they're they they don't have aproblem subscribing to things as
long as it's going to help themin in their daily lives.
SPEAKER_01 (20:16):
Absolutely.
So there is information throughso many wonderful organizations,
like you mentioned, DavisSpinney, Parkinson's Foundation,
but it can be a littleoverwhelming.
And so we have health coachesthat are basically the biggest
part of Stripe PD Guardian.
(20:36):
And they're the most valuablepart, that human connection.
Technology is never going toreplace your clinician, your
care partner.
I mean, these are all suchimportant aspects of care.
But what happens is, you know,people need to plan for that
next appointment, right?
Just like you mentioned, theclinician's gonna ask you how
you're doing.
(20:57):
You wanna give them a good,accurate picture of how you've
been doing so they can reallyoptimize regimen.
We have a very well thought out,well put together kind of
pre-visit planning that we lookat all of the data over three to
six months and we use a largelanguage model, which is part of
(21:19):
AI, you know, that's thebuzzword, but AI and this large
language model is really good atsynthesizing all the symptoms,
all the little notes thatpatients take in the app.
And it brings up the top threesymptoms that they should
discuss with their doctor.
So if they've been logging a lotof constipation, if they've been
(21:40):
logging a lot of anxiety, maybetheir medications, they're
they're missing doses ofmedications, that's gonna get uh
brought to that top priority sothat they, when they get this
pre-visit preparation, they knowexactly what to talk about with
their clinician because it's allthe data they've been collecting
(22:01):
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 Ineed to bring that up and I
haven't, or you know, I ammissing medications.
And I'm, I don't love to tell myclinician that, but maybe
(22:21):
there's another opportunity fora long-acting carbidopo-livodopa
where I can not have to takemedicine for five times a day,
but only three times a day.
Those are the things thatoptimize quality of life, that
if you can translate that toyour clinician, they can give
you, you know, education on whatis out there.
(22:42):
So Guardian offers thispre-visit report, and then they
also offer any time you need acoaching session in between
appointments.
So if a patient goes into theirclinician and the clinician
says, you know, I think LSVT Bigor Rock Study Boxing is going to
(23:02):
be a great therapy for you.
Um, you know, go out and do it.
And maybe they don't know whereto start.
Our health coaches can give themwhat how does LSVT big compare
to rock steady boxing?
What's similar?
What are the differences?
Um, you know, they can talkthrough that care plan and
really give them that support onhow to start or how to stay on
(23:26):
track with what their clinicianis recommending.
SPEAKER_00 (23:30):
Okay.
Is this something that insurancecovers?
Because I know people may bethinking, wow, this sounds
great, but I don't wonder if myinsurance covers it.
SPEAKER_01 (23:38):
We are working on that.
We really want healthcare plansto cover this.
And we've done a huge projectand pilot with Kaiser
Permanente, where, you know, weare really trying to show the
data that supports being onstrike PD is going to keep
people healthy out of the ER.
It's going to keep them with abetter quality of life.
(24:00):
And it also is going to helptheir clinician with care inside
the clinic.
And we have shown with thiscohort of patients that we can
reduce clinic visits.
I mean, I'm sorry, we can reduceclinic visits.
People are doing so well, theydon't have to go as often
because Strive PD is reallyhelping keep them motivated and
(24:20):
on track.
But we have reduced ER visits by50% in patients that are using
Strive PD.
So this is the first kind ofinitiative that we're doing to
prove to healthcare plans thatthis is something that insurance
wants to cover because this canhelp the patient long term.
(24:40):
And, you know, it's it's worthit 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, asubscription where you don't
have to pay that full amount forthe year up front.
You can do it in monthlyinstallments.
SPEAKER_00 (25:02):
Okay, great.
Well, 50% reduction in emergencyroom visits is incredible.
So I mean that's something to beproud of.
Well, let's switch gears alittle 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'sFoundation has that PD uh
Generation where they're they'redoing uh blood and genetic
testing.
So how does how does your yourcollaboration 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'sFoundation, you know, you can
get free genetic testing anddigital, you know, biomarkers
with Stribe PD together, which,you know, we really haven't
linked the two together.
(25:54):
Um, so for people that have agenetic variant, you know, we
think that's about 13%.
But, you know, this is such agreat collaboration with the
Parkinson's Foundation becausewe can do more widespread
genetic testing to make surethat, you know, is there more
genetic related Parkinson's thanwe think?
And then how do those peoplethat have a genetic variant
(26:18):
differ or should their treatmentdiffer because they have LARC II
or, you know, their GBApositive?
So we can start to understand,you know, which subtypes of
Parkinson's respond best towhich treatments.
We already know that there'stremor-predominant patients.
(26:39):
There's 30% of patients withParkinson's that don't have
tremor at all.
So I think this is a steptowards how can we target
therapies to people that havegenetic variants?
We can learn how they respond tothese medications, and you know,
we can think how can we diagnoseearly?
(27:02):
How can we get better outcomesby using this precision
neurology and taking thisgenetic, known genetic variant
with symptom data and dosomething where maybe we change
the way we we treat GBApatients, maybe we change the
way LARC II patients aretreated.
(27:24):
And I'm I'm really excitedbecause I think that Alzheimer's
just had this amazing outcome inthe last couple of years where
they have a medicine that slowsdown the disease progression.
And this medicine came out of atiny little clinical trial for
this rare genetic variant ofAlzheimer's that we use now
(27:44):
worldwide for anyone withAlzheimer's.
Um, and so I think that's wherethis is leading.
Parkinson's is gonna follow suitand we are gonna find that
treatment that that slows downthe progression.
SPEAKER_00 (27:58):
Great.
So is this a collaboration?
Is it a clinical study that'sbeing conducted that people can
sign up for?
Or is it just you're taking thethe current people using Stride
PD and then the Parkinson'sFoundation is taking the PD uh
generation uh group and thenjust you're blending that
together?
SPEAKER_01 (28:18):
Exactly.
So we have over 15,000 patientson 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 inseeing if you have a genetic
variant?
And so they then sign up for PDGene and sign the consent to
have their data analyzed, whichcan be a little scary.
(28:41):
You know, people are veryhesitant to share their genetic
information, and rightfully so.
But we are very confident in theParkinson's Foundation that this
isn't being shared to thirdparties.
This isn't being um, you know,further analyzed in some sort of
way that a patient hasn't uhconsented to.
(29:02):
So we are finding that a lot ofour patients and our network, a
lot of our users are veryinterested in this.
And so we just got this off theground and you know, are
starting with our first uh 50people who have gotten a kit
that they can do at home, whichis really convenient, to send
back and we can see who has thatgenetic uh information and and
(29:24):
start looking at their data overtime.
SPEAKER_00 (29:27):
Yeah, I know I've done clinical studies myself and
I always talk about thebenefits, how it can help push
Parkinson's understandingforward.
So, how do how would peopleenroll in this if they were
interested, besides downloadingthe Strive PD app?
I mean, how would they, if theywanted to participate in this
type of study, how would they goabout doing that?
SPEAKER_01 (29:49):
Yeah, so if you go to the Parkinson's Foundation
website, they have all thatinformation on the website.
So, like you said, it's calledPD Generation.
Um, so you fill out A shortsurvey and you sign a consent
form, and there are differentsites.
So, you know, maybe the clinicthat people are getting their
care in are a site for theParkinson's Foundation, or they
(30:13):
can have it mailed to theirhome, and there's an easy blood
collection system that is veryuser-friendly.
We've had good success withthat.
Um, that they can participate.
I'm I'm almost positive there'sover 20,000 people who have
already participated in PDgenes.
So would love to see that numberdouble and triple.
SPEAKER_00 (30:34):
How long is this study going to be going?
Is this an ongoing thing or isit 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 gofor the next several years to
continue to collect this data.
SPEAKER_00 (30:56):
Okay, great.
All right.
So if if someone's interested inreally 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 AppStore, 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 AppleWatch, um, that's okay.
You can still use your iPhone torecord symptoms, to carry in
(31:32):
your pocket so that it can getyour mobility metrics, because
the mobility metrics, a lot ofthem come from the phone.
You want to wear it at waistlevel, so in your pocket or in a
belt bag is the best.
And if you want to get an AppleWatch, um you can get just the
basic model, the SE model.
You don't have to get the latestgeneration.
(31:54):
Um, it all works on um StribePD, the SE model, and then start
using it.
Start just living life, wearingyour watch and collecting data.
Um, it's a very easy setupprocess.
So even if you don't meet withone of our um health coaches or
a patient specialist, you can goon stribepd.com and we have
(32:20):
videos, tutorials, step-by-stepinstructions on how to set this
up.
SPEAKER_00 (32:26):
Okay.
My next question was what shouldpeople expect in the first
couple months when they're usingstride PD?
SPEAKER_01 (32:32):
Yeah, so I would say, like anything, when you get
a new medication, you know, thefirst couple of days, maybe you
don't feel good.
Maybe that's coincidence, maybenot.
You know, you really have to trysomething four, six, eight weeks
before you start seeing thatbenefit.
So I would say in the firstcouple months, collecting as
much data as possible is thebest.
(32:54):
So, what I mean by that iswearing your watch at least six
hours a day, wearing it to bed acouple times so you can track
your sleep.
Um, and then interacting with itat least once daily so that you
can log.
How have you been doing?
How has your mood been?
What has been the best part ofyour day?
(33:15):
What's been the least favorable,favorable part of your day?
There's a note section in theapp that people use as like a
journal.
It's very cathartic.
You kind of type out, I went outwith my friends, I had such a
good day, I didn't even noticeany off time.
Maybe another day, you know, youalmost fell.
You tripped over your rug andyou almost fell, and that sent
(33:36):
your anxiety through the roof.
And so the more you log in thebeginning, then you're gonna get
those reports.
So you're gonna find that firstfour-week report and then the
next four-week report, andthey're gonna give you that
comparison.
And so that's where you canreally see, okay, this is what I
understand happens as I'mcollecting my data.
(33:58):
This is what I get back, andthis is all the information that
it tells me.
And you can use that as atoolbox.
So you don't always use everytool in your toolbox for each
day or each project.
So use it to your advantage ifsomething is really bothering
you, or maybe your clinician hassaid, you've been talking to me
about dizziness.
(34:19):
I want you to check your bloodpressure sitting and standing.
Maybe doing that in the app andum, you know, logging your blood
pressures can kind of show youday by day, month by month,
correlations.
Um, so I think there's a lot ofbenefit that you can get out of
the app in the first couplemonths.
SPEAKER_00 (34:40):
One of the things I thought what I heard you say was
really interesting was beingable to take notes in the app
because I know a lot of timeswhen I go to the movement
disorder specialist, they alwayssend you the the questionnaire
in the mail.
It's like, how many times haveyou phone in the last month or
tripped, or how was your anxietyin the last seven, fourteen
days?
So at least that that way if youif you track that, it it'll
(35:01):
really help you and help the theclinician 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 questionnaireas accurately as possible so
that you're not missinganything.
You know, it's easy to skip overconstipation, but constipation
is a huge issue in how yourmedications absorb in your
stomach.
And so if you're constipated andthat GI motility uh is slowed
(35:30):
down and things aren't movingwell, your medicines aren't
working well.
So it's a huge piece of thepuzzle to your symptoms, and you
don't want to skip over that.
So logging things that you thinkmaybe are not super important
could become important, and thatcorrelation can be seen as you
start collecting data andpresenting this to your
(35:51):
clinician.
So you never know, even thesmallest things can make the
biggest difference.
SPEAKER_00 (35:57):
Yeah, I know I I participate in that Michael J.
Fox Foundation PPMI study, anduh every quarter, the first
thing they ask her, what are thetop five most bothersome
symptoms?
And a lot of times I sit thereand think to myself, oh, but it
using Stripe PD, that woulddefinitely help me be able to
really provide a lot betterquality data than just trying to
(36:18):
go off the top of my head aboutwhat's bothering me because I
think we're all human and wetend to focus on things that
that happened in the short termversus maybe a longer term
trend, if that makes sense.
SPEAKER_01 (36:30):
I agree.
I agree.
You know, you kind of brush offsome 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 ofthe smaller symptoms could lead
to bigger things.
And, you know, Michael J.
Fox Foundation is anotherwonderful organization that just
(36:50):
invited me to go to Capitol Hillto advocate for Parkinson.
So earlier this month, I waswith a bunch of organizations
like Michael J.
Fox Foundation and PMD Alliance.
There were over 270 of us onCapitol Hill, people living with
Parkinson's, clinicians likemyself, care partners who were
(37:11):
talking with over 44 states inthe US, the House and the
Senate, really advocating formore research and more funding
and all of the things that weneed for Parkinson's patients.
So definitely love Michael J.
Fox.
SPEAKER_00 (37:28):
Great.
So just looking ahead, whatexcites 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 andgetting people better
individualized treatment plansrather than a one size fits all.
That just doesn't work.
And I think with all of thesenew studies and new clinical
trials and research and data, weare gonna find a cure.
(37:58):
We might get a disease modifyingtherapy first, which will be a
great step in the rightdirection.
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 theLib Parkinson's audience with
some suggestions or oneimportant piece, what would you
like to have them take away fromthe conversation that we had
today?
SPEAKER_01 (38:28):
That's a great question.
I mean, Parkinson's is hard tonavigate.
It's cumbersome.
It doesn't just affect one bodypart, it affects several
different areas of your body.
And, you know, you're not alone.
You don't have to guess what'shappening to your body.
There's tools out there, ofcourse, like Stride PD and other
tools that can give you someclarity, that can monitor your
(38:50):
symptoms, bring that back toyour care team, get you on the
right treatments.
Maybe you need a long-actingmedication, or maybe you'd be a
great candidate for one of thepumps that are coming out.
And ultimately say the thingsthat maybe are small to you but
could have a huge impact.
You know, taking constipationout of the equation with
(39:11):
medication or over-the-countersupplements is gonna improve
your quality of life hugely.
Um, so I think that Parkinson'scan seem overwhelming, but
taking it day by day, havinggood resources and good support
is always gonna be somethingthat leads you to better
(39:32):
understandings, bettercommunication, better treatment,
better quality of life.
SPEAKER_00 (39:38):
Okay.
So if if people wanted to getmore information, how would
they, where should they go onRune Labs and Stride PD?
SPEAKER_01 (39:46):
Because some people like to do a little research
before they would like to learnmore about Rune Labs, you can
visit their the website at runelabs.io.
If you want to learn more aboutStrivePD, you can go to
strivepd.com.
If you have a question for us,you want to, you know, ask one
(40:06):
of our patient specialists aquestion or you're not sure
about something, you can emailus at support at rune labs.
SPEAKER_00 (40:15):
Great.
Well, I know one of the things Ialways like to try to end with
is to have some type of call toaction.
And I know one of the thingsthat I'm gonna do uh when we're
done here is to download StrivePD because it's it's definitely
something I think that's gonnahelp me in the long run and help
prepare for uh so but I wouldyou know hopefully the audience
will say, Wow, that's somethingI want to check out as well.
(40:37):
But I really want to thank youfor your time and and all the
experience that you've sharedwith us today.
It's been a great learningexperience for me, and hopefully
uh there's a lot of people outthere listening that are gonna
walk away and and say, I'm gonnatake control of my uh my
symptoms, I'm gonna take uhcontrol of uh how I manage my
(40:58):
Parkinson's and you know collectthe data that they can share
with their movement disorderspecialist or neurologist to
help them in the the future.
SPEAKER_01 (41:06):
So I think that's wonderful.
Yeah, thank you so much forhaving me.
Um you know, we're here to helpyou in your journey, whatever
that may be, big or small.
Again, anything that can makethat significant quality of life
difference for you to feelbetter, do more exercise, take
your medication on time.
(41:26):
Strive PD can help with all ofthat.
And even if you think you're nottech savvy, try it.
There's no harm in trying it.
Try it out, collect data for alittle bit and see how much uh
it impacts your your life.
SPEAKER_00 (41:40):
Great.
Well, I want to thank you somuch for being on the program
and for all you do for theParkinson's community.
You you do a uh a great service,and we we want to thank you for
that.
All right,
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