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Parkinson’s: An Athlete’s Journey is for athletes navigating Parkinson’s, the coaches and clinicians who train them, and anyone who wants real-world strategies for performance and longevity. Hosted by Eric Von Frohlich and Todd Vogt, the show focuses on tactical takeaways: how to train, recover, manage symptoms, and stay consistent when the rules keep changing. Expect honest conversations, tested routines, and guest experts who go deeper on what works.
Eric Von Frohlich: [00:00:00] Today I'm joined by Ashley Ellis, a mom of three, captain of the Human Powered Potential 2nd
Wave Rowing crew, and someone living with early-onset Parkinson's, who's been diagnosed,
turned her diagnosis into a record-breaking mission on the water, and just wanted to say it's gonna be a remarkable
time
together.
So thank you for joining me,
Ashley.
Ashley Ellis: Thank you, Eric. It's a pleasure to be here. I'm looking forward to our conversation
Eric Von Frohlich: So let's start with your diagnosis. What was going on in life and, how did
this come about to link us together?
Ashley Ellis: Yeah. So, in terms of my diagnosis, it was
about five years ago. This was in 2021. I had, just turned 40 years old, and
I started limping. Yeah, I had a, a tremor
in my hand, but I really didn't pay much attention to it because
my mom has an essential tremor, and so it really, really didn't bother me, the occasional shaking in my left hand.
Everything's on my left side. But it, it bothered me about limping. And so what I was [00:01:00] doing at the time was picking up, my kids from elementary school. We have a school in the neighborhood. It's a mile away. And so even though I could walk or bike, which I do at times, at the time, I was driving because it's so hot here in Florida, especially in, in, August, September.
So, and that was around the time that I was, starting to notice something was different. And what I would do is I would drive to school, park my car down the street, and walk up to the school to pick up my kids, and I noticed a limp. And it just-- it didn't hurt, but you know, other people noticed.
And I started going to see doctors. I went to a chiropractor and tried to make sure my spine was, you know, not out of alignment or physical therapy. I tried some MRI scans and then ultimately ended with a Parkinson's diagnosis, which was a big, big surprise, right? Shock and, some disbelief. but since then, I've had started with medication pretty quickly and really got into exercise.
Movement is
medicine, of course, and so we [00:02:00] know that, exercise is a great way to, slow the progression. And so I started running, and I decided that I would run a 5K once a month. I had always been active in my life, but having three small kids, you know, it had sort of fallen to the wayside, but so I really ramped back up with that.
And then I got back into rowing at the master's level, which I had rowed in college. and so that was really the, how I discovered the diagnosis and
Eric Von Frohlich: did you,
row crew or did you
Ashley Ellis: I rowed crew at Georgia Tech when I was in college, and, it was for the first year of college, And it was just one of those sports that's so captivating.
you know, we got up really early. We drove up to the river. I remember the water was like glass. the sound of the oar ch-ch,
through the water ch-ch, and,
um, just kind of like caught the
bug early on. And then I had to stay awake in my classes, so
I had to move on from rowing, but
I had, just a real love
for it, during that first and a little bit of the second college years, up in [00:03:00] Atlanta.
and then fast-forward after, 20-some years of, not having rowed, got back in at the master's level, shortly after receiving the diagnosis of Parkinson's.
Eric Von Frohlich: Wow. it's an amazing transition to go from being a young mom to being a d- diagnosed with Parkinson's my kids are a little bigger, so not much, but five years ago myself, same situation, same story basically. and so it, it's kind of remarkable that you've transitioned so quickly to taking on a, world record-breaking
challenge
Ashley Ellis: Well, and that's its own whole story of its own. But I think one of the things that is really important to note, as I was coming to grips with the diagnosis, community really played a big part of it, right? Because I had never thought that I was the person or profile that would, you know, have Parkinson's, right?
And so as things, have changed and I've become aware of [00:04:00] young onset Parkinson's disease, finding a community of young onset, you know, women, especially moms who are active, has been really important. So that's part of my early, journey, is to really come
to grips with it through, connection to community. And there's been community in
the, rowing community,
in terms of Orlando Rowing Club and more, you know, flat water
rowing. and then also in the ocean rowing community. It's just been incredible. But, one of the best things in terms of going from, finding out a diagnosis, really ramping up exercise, in-increasing that, to where I am now, really is quite a journey as well.
So I can't wait to tell you about it.
Eric Von Frohlich: It has to be something dramatic to get You to go back on an erg after
rowing in college
Ashley Ellis: You know, erg rowing is not as enjoyable as rowing on the water, right? So those sunrises on the water are just so good, and that feeling after a training row, and the exercise is just so awesome. But yeah, it's a different level of [00:05:00] commitment and dedication in the garage, in the heat, without, some of those beautiful elements to motivate.
And really what was, quite special was the story of the row that we're taking on in spring of 2027
comes out of the Orlando Rowing Club. And so some of those friendships that were formed at ORC, is really where the story starts.
Eric Von Frohlich: Oh, amazing. let's first compliment you for recognizing the importance of community and, I assume you did that relatively quickly. You reached out to your surrounding network and
looked for points of connection?
Ashley Ellis: Yeah, exactly. And there's a few, Parkinson's communities, social networks here in, Orlando. And, what was really neat was I actually got connected with a group of young onset women that I had mentioned before, but it was through, the social worker at the neurologist that I went to.
I went to a neurologist here, a movement disorder specialist, and then I connected with, there's a research, neuroscience, uh, facility [00:06:00] in University of Florida in Gainesville. And the social worker called and said, you know, "Is there anything I can do for you? We're happy to support you."
And I said, "I really just need a friend. if there's anyone that you know who's like me, who's, you know, young, has a family, is, active with exercise, I would really just love to, you know, make a friend." And, sure enough, a week later, I got a call, and she had gotten permission to share the information, and so we connected.
And, Erica is one of the first friends that I made, and we've been able to stay in touch ever since. And it's just been really rewarding to have her and a whole network of women across the country. And, since then, having met
and seen and talked with, people who have young onset Parkinson's who are
rowers, it's really grown out of that even
more, than, the first community that I was able to connect with.
Eric Von Frohlich: It's remarkable because I lone wolfed it for a bit and thought I'd out exercise it and out train it and, you know, just fight the battle until I, you [00:07:00] know, realized very quickly that that was
not gonna work
Ashley Ellis: Yeah. I think connection is really important to me, especially. One of the, one of the things that surprised me about So when I decided to get back into rowing, I went online, and I searched for Parkinson's, 'cause the question that I was asking myself was, okay, I mean, running is one thing, but w- in terms of the balance and stability and coordination challenges, how can I get in a boat on the water, right?
Especially... Well, and at that time, I had not done any sculling, so I had never been in the, the small boats with, you know, a single or a double. But I've, I had learned since then,
and that's been even more, challenging in a good way. but I was in the big boats, and, Or at least that's what I wanted to do.
And so I, I did a search online. I went, I went to Google, right, the ultimate source, and I said,
" c- uh, who is a rower with Parkinson's out there?"
And, the only person I found was a guy named Todd Vogt [00:08:00]
Eric Von Frohlich: It's ironic. I found a master.
Ashley Ellis: Oh, do you know him? and so he showed up in the feed and in the search, and what was convincing to me was there was a video that he had done an interview with local media, and there was a video showing him at the boathouse.
He had
a single, out there, and he was talking to the, the news reporter about it, and his hand, was, having a tremor. And for me,
that was just everything I needed to see and hear because, that was how I was
able to say, that's what I
look like. If he can do it, I can do it." And so he really was my inspiration in terms of having, uh, at, at that point, you know, hadn't met him or anything, but just
having seen someone who, you know, was out there rowing with Parkinson's that, for me, I can do the same. And, you know, it was a similar experience when we were connected. there was an idea that came about,
rowing the Great American Loop. And so
after, Parkinson's, I really began to embrace adventure, right? Like a YOLO mindset. You only [00:09:00] live once. And so I had this urge to, like, live kind of big and urgently.
And so, my family, I was l- you know, with my family, I have a, my husband and three kids. They're 12, 10, and 8 now. And, we were like, " let's go on vacations together. Let's, you know, travel and see the world." We went to Alaska.
and so, and with exercise, what, you know, what can we do? What races can we
Eric Von Frohlich: I have to?
interrupt you for a second. I Did similar. I was
in Alaska this, just about a month and a half
ago,
Ashley Ellis: Did you love it?
Eric Von Frohlich: I loved it. And I, I completely agree with the YOLO, although I think
my wife thinks I'm, like, I have, like, a death clock that I'm counting down
because,
Ashley Ellis: right.
Eric Von Frohlich: know, today's the best you're gonna feel probably for the rest of your life, so you have to
really embrace it and take the good with the bad
Ashley Ellis: for me it was a matter of,
nothing is guaranteed and so why not, you know, why not embrace living in the now. So
I'm, I'm with you too on that. so yeah, I think, you know, a lot [00:10:00] of my
mindset went from, especially right after the diagnosis, what if I can't... You know, and these are, hard thoughts to think, but what if I can't walk in whatever, you know, 10 years?
I, I don't know, right? I don't know
what's coming. but I didn't sit there
for long. I think I was able to evolve that or, you know, through the connections that I
had made, hope started to
come into my mindset and that growth mindset and that the possibilities mindset. And so the what if
turned from what if I can't walk in X number of years to what if, what if we go to Alaska?
I think I had this notion that you have to be, I don't know, in your later years retired. You know, I
don't know why .Yeah. Yeah. And so
I think I said to myself, " What if we go now?" and so we were able. We were fortunate enough to do that. But I think that what if is the mindset that preceded, the whole rowing the loop to begin with.
But, you know, the idea came from a [00:11:00] friend at Orlando Rowing Club, and that's how... You know, that's really where it started.
Eric Von Frohlich: Well, it's, it's great that you switched the what if from a diagnosis and, and depression to flipping it to, like, a world record and a, and a challenge. it's inspiring to realize that it's the same what if. It's just a matter of how you, how you wanna proceed with your life, and I think a lot of us, you know, accidentally slip into depression or apathy or something that. is, the complete opposite of it because it fires up the fear factor as opposed to being inspired and, finding your community and, living your life as fully because even whether they realize it or not, those that aren't diagnosed, there's a timeline on our life and you have to make the, most of it, and you don't know when that's, gonna end.
And so particularly with, you know, your family, you wanna share memories
and,
Ashley Ellis: Yeah.
Eric Von Frohlich: and that's great
Ashley Ellis: I agree. I think it's the, one of the blessings [00:12:00] has been that, really, the appreciation for every moment we have. because diagnosis or
not, there really, there is a 100%, chance of the way our, our lives, you know, lead to, right? And
Eric Von Frohlich: Yeah.
no one's getting out alive
Ashley Ellis: yeah. Yeah. So I found myself saying yes to things that were really embracing the moment.
So when I'm at the playground, you know, with the kids and they say, "W- will you chase after me?" The answer's yes, right?
Eric Von Frohlich: Right.
Yeah,
Ashley Ellis: all, running is, running is good for you. Second of all, they love it, and it's so fun. And I recognize that it won't be forever that they'll continue
Eric Von Frohlich: and that's, you know, how many times are you
gonna feed them before they feed themselves, and how many times are you gonna tuck them in bed before they tuck themselves in bed? And, you know,
there's, life has chapters, and you have to be careful not to miss them while you're busy doing other stuff.
it's beautiful that you're able to recognize that [00:13:00] so early on in your diagnosis and really turn this thing into something inspiring. And I wanted to share that, you know, we often say in the, in this community, "If I can affect the life of one person
it's worth it," and you are affecting the lives of thousands of people through Human Power Potential, it's
a
great, story.
Ashley Ellis: Oh, I appreciate it.
Human Power Potential i-is an inspiration to me. You know, the, the mantra is inspire to endure. And when I was ready to go back into flat water rowing, and Todd's video inspired me to think that I could do it.
when we were connected, we had this idea, and then when we were connected to, Human Power Potential and really began to learn what they were doing for Parkinson's, that's when it, the crazy, if you will, idea became an opportunity to have a purpose for Parkinson's. And seeing, Pat and Brendan and Scott and Pete having rowed across the ocean, which I [00:14:00] had never heard of before, and especially having, you know, for the, having the purpose of Parkinson's with Patrick being the first person to row across the Pacific with Parkinson's, it was inspiring to me to be able to say, that's something that, that we could do, too, in terms of rowing a, a big distance and to be able to do something pretty remarkable and for Parkinson's.
and so, their partnership with the Michael J. Fox Foundation is
just incredible, and the forty-three million dollars that they were able to raise is just mind-blowing. So that caught our attention, and we were really thankful to have, that inspiration as well.
Eric Von Frohlich: So let's jump into that. because you've been a model for, for the rest of us on how to approach Parkinson's and, it's inspirational. But tell us about how HPP came into your life and what the second loop is
Ashley Ellis: Yes. Yeah, right, exactly. So I had never heard of the America's Great Loop prior to, a conversation. We were actually [00:15:00] sitting across, the kitchen counter right here at my home, a few of us from Orlando Rowing Club, and one of the ladies who has some boating experience, she shared what it was with us And we were, you know, we were just...
I mean, we were drinking red wine and eating sourdough bread and just hanging out, a bunch of ladies and she said, "What if, what if we rowed the Great American Loop?" and we all, I think we all like choked on our, you know, wine and just were like, "What? That's in- that's incredible." Like, "What, what, who, that, how could that be?"
and then nothing happened, right? So then fast-forward, maybe a year and a half or, or two years later and, she came to the
team and said, " there's a boat." And then a connection was made to someone else and we were able to meet-- I was able to meet Patrick Morrissey, right?
he's, lives with Parkinson's and he was the one on the Human Power Potential team who, has Parkinson's and rowed, across the Pacific with the team. And just the nicest guy
Eric Von Frohlich: He's just a great human being. [00:16:00] I mean, he really is,
you know, couldn't be a
better person
Ashley Ellis: so welcoming and we talked and it was just incredible to think about what that would feel like and the adrenaline and the, fear and just the bravery about how that would feel to do something so big.
The idea sort of evolved
into what if, we did this to continue a legacy of
something that was already pretty remarkable? And somewhere along the way I thought to myself, what if we rowed the American Spirit, right? To continue the legacy using the boat that they, had, right?
know, this is a championship boat, right? It has world records across multiple oceans and so it's a really special boat to begin with. So yeah, we were able to, make that connection and move forward and been-- It's been
a really wonderful partnership.
We are a part of Human Power Potential and carrying on that legacy, and that partnership with Michael J. Fox Foundation. If successful, we'll be the first ever, crew of [00:17:00] women or crew of, people to row this route. And it is quite an undertaking, and we're really excited about that
Eric Von Frohlich: Can you tell us for those that don't know what the route
is?
Ashley Ellis: Yes. So this, the America's Great Loop, It's a continuous waterway around the eastern half of the United States. So if you were to leave from the east coast of Florida and go north through the Intercoastal Waterway, you come up through the Hudson. You can go either, there's a Ca- a Canada route that you could go There's some waterways up there, Trent-Severn Waterway, or you can cut through the locks through the Erie
Canal, and those are only open a certain part of the year. Go through the Great Lakes, through Chicago, and then down the Mississippi River,
Eric Von Frohlich: Wow
Ashley Ellis: and then come out. You can come out either,
Near New Orleans or, um, Mobile, Alabama, and then come through the, uh, the Gulf and then around to the, um, around [00:18:00] Florida to, um, what is called crossing your wake. So when you-- - The large ninety-nine point nine percent, the majority of people, uh, use a motorboat for this journey, and, um, crossing your wake means you are crossing the waters where you began and to begin with.
And so, there's a couple people who have kayaked, this loop, and we will be the first to actually row it
Eric Von Frohlich: Wow, and how far is it
Ashley Ellis: Well, it depends on which route you go, but between 5,200 miles or up to upwards to 6,000 miles, right? So we're, you know, it's, it's so funny because the, the team of women that we have that we're, taking on this adventure, we're all used to, you know, 1Ks and 5Ks
Eric Von Frohlich: Right.
Ashley Ellis: with four-minute rows and 20-minute rows.
And so, it's been wild to, to adapt to this endurance rowing, right? And so we've been [00:19:00] able to have partnerships with coaches that are, used to endurance rowing with ocean rowing. And so that's been a, a change of pace for us, quite
Eric Von Frohlich: So what's your training look like now? I mean, how much time are you putting in to get ready for this? 'Cause it seems
like a remarkable goal, so
Ashley Ellis: Yeah, It's a lot. It's time-consuming. We've worked our way up to two-hour rows. We're doing a mixture of zone two rowing, and also threshold, rowing in terms of pushing that upper limit and expanding our respiratory capabilities. One of the first rows that we ever did, we did a two-hour row together at the boathouse on the ergs, and we watched a movie.
It was, um, The Greatest Showman.
Eric Von Frohlich: Oh, great
Ashley Ellis: So we, we've learned how to row two hours on, two hours off. We recently started rowing two hours on, two hours off on the boat. So where there's water training, and then there's land training, of course, 'cause we're doing once a month, uh, training on the boat in terms of taking it out for, [00:20:00] forty-eight hour, and so on.
We recently just got back from the Intercoastal Waterway. So there's, there's the, the workouts themselves, strength training, and the erg pieces, but then also the once-a-month water training. And then there's all the logistics, right? So a lot of planning, route planning, it's-- that is different from the ocean rowing experiences that we're navigating these waterways and using, some of the same boating tools and navigation tools that regular folks who are, are in a recreational
boat, use as well.
Eric Von Frohlich: All right, so for the most part you're
nearshore or you're
Ashley Ellis: Yes, and so that's, you know, it's something that makes us feel a little bit safer, right? But also at the same time, there's, its own challenges. Like,
Eric Von Frohlich: Yeah, you have boat traffic
Ashley Ellis: boat traffic, especially on Saturday, Sunday. We're, we're learning to ride the waves of some of the folks that like to blaze on through.
But also the depth of the water, right? Nobody in ocean rowing is looking to make sure that there's enough depth. So the boat itself sits about [00:21:00] 12 inches. The draft of the boat is about 12 inches, , in the water, but the rudder is a little bit longer than that. So we've learned to watch our navigation tools to make sure that we're not, beaching the beaching the boat.
, But what's really, really especially incredible is the idea of, going out into waters that we haven't rowed in before. I mean, this is such a long race that we're gonna be going into, new places, new waterways. And so this past weekend, what we did was we took the boat over to the Intracoastal Waterway over by Cape Canaveral, where some of the rocket launches are, and there's a big ship, like port there.
A lot of cruise ships go out of that area.
And so we took the boat out. We needed to get like three 12-hour blocks of training with the two hours on, two hours off. We, We actually played with the rotation a little bit. So there was like, a shift for rowing, a shift for, steering and navigating, and then a shift for sleeping.
Eric Von Frohlich: And how large is your crew?
Ashley Ellis: So we [00:22:00] have six ladies. We're a team of six women. We, um, will have some ground support, and so we have the option to row four or five, at a time. And when I say four or five at a time, I don't mean rowing four. There's three rowing stations, so we can either row two up or three up.
And so what that means is someone is, especially in the Intracoastal Waterway
With traffic and, and different depths of the water, someone is hand
steering and navigating with the, Navionics, which is the Garmin navigation tool that we use, and then someone's resting. So our typical, configuration with four is two people rowing, one person steering and navigating, one person resting, and so we rotate through.
And so because it's so hot, I mean,
we're-- this
is again, it's August in Florida, and so
to get those 12-hour shifts, it's prohibitive to row in the daytime. So we did some nighttime rowing, which was its own lear- I mean, you know, we're going to be keeping this boat moving. That's the goal for the spring when we take it in 2027.
and so [00:23:00] we got
some nighttime rowing practice and one of the most beautiful things about the whole experience was, besides, kind of being afraid of what's behind the shadow when we can't see very well like we're used to, the bioluminescence. Have you ever heard of
Eric Von Frohlich: I have.
Ashley Ellis: Yes. So bioluminescence was active just this past weekend when we brought the boat to the Intracoastal Waterway,
Eric Von Frohlich: describe that to our
listener
Ashley Ellis: Yes.
So anything that touches the water, it just illuminates with this like blue glow, right around the water that's being stirred up. I think it has something to do with an algae that's only, you know, active on certain types of water, certain parts of the year, and this was the part, the water, the place and the time that it was active.
And so our oars were going in the water and pushing through the water, and it just like illuminated with this blue swirl of like all around the oar.
Eric Von Frohlich: it, sounds
Ashley Ellis: to me... Yeah, to me, it's kind of like if you've ever watched the movie Avatar you see like the nighttime scene, it all [00:24:00] comes, like comes to life and like just glow.
That's what it was like. And so like between that, the bioluminescence, those sunrises and sunsets, and a couple times we had little dolphins that were coming alongside our boat,
and they were stirring up the blue water, too. It was just, it was incredible. So yeah, that was our adventure this past weekend.
We deal with challenges, too. There's wind and current and, you know, bugs that are biting at our ankles and the sun and the heat. So You know, it's, beautiful, but it's also, it's challenging and, you
know, hydration and fuel is really important. We're finding that, we gotta make sure that all of that is, is dialed
Eric Von Frohlich: And does your crew stay on the boat the entire, for the, entire journey, or are you cycling people
on and off?
Ashley Ellis: Yeah, so the idea is that we're cycling people on and off, but the boat keeps moving. And so we'll have a ground support vehicle with us. And so for me, one of the things that I'm anticipating is really [00:25:00] discovering... And Patrick Morrissey is a great resource for this in terms of asking questions about what it was like for him, but, really caring for myself, but anticipating what does that look like in terms of, you know, some of the sleep disruption and, realizing that I'm taking, you know, medication in a different way.
So, um, that's
Eric Von Frohlich: should be
used to sleep disruption if you have Parkinson's. I
Ashley Ellis: That's actually true. That's actually true. This is intentional sleep disruption, right? It's like
Eric Von Frohlich: It's gonna happen anyway, so
you might as well make the most of it and get up
and row
Ashley Ellis: I mean, I feel like I'm practicing every time I wake up at 3:00 AM and can't go to sleep until 5:00 AM, or just decide I might as well stay up anyways.
Eric Von Frohlich: Right. But I'm sure you're sleeping better with all
this training, right? I mean, that has to help
Ashley Ellis: The fatigue helps with sleep, and so, The fact that I'll be allowed to sleep during the day, makes it feel normal. So
Eric Von Frohlich: it's, amazing. You have such a great attitude
about it, and it sounds like you're surrounded with a great crew
Ashley Ellis: Oh, the team's awesome. Everybody in some [00:26:00] way-- we all have our why, and, most of us, it's Parkinson's and I think what's really special is- the other why that has come out of this and is really a part of it from the beginning is, , the relationships, right?
So, , what's beautiful is just the relationship we have with the Human Power Potential guys, and then so now for us, this team of ladies
that are carrying that forward and, and being able to learn and grow together, individual growth. I mean, we had just an incredible debrief meeting after our rowing this weekend, realizing how much we've learned about ourselves.
Like, we're talking fears and, vulnerabilities and realizations about, you know, skills that we need to learn and areas that we have discovered, but then also sharing that with the team. I mean, - it's its own really powerful community, but just being able to understand more about ourselves and growth individually, but then, as a result of that, talk about it as a team.[00:27:00]
And, Brendan, was the team captain for their boat, and he has really done some awesome coaching for us in terms of helping us to see the opportunity to be vulnerable with each other and care for each other in special ways. And, and not just me with Parkinson's, but each of us has our own
Eric Von Frohlich: Yeah,
it brings up
everyone's fear
Ashley Ellis: Yeah, exactly. And when do we really have
an opportunity in life to face those really?
And,
Eric Von Frohlich: And face them with someone who's gonna support you and people who are going through the same
experience. It's like going to
war in a way
Ashley Ellis: That's exactly right. I've never
experienced teamwork at this level before in my life. But just to tell you a little bit about the team, there's two sisters who, their mom has Parkinson's, and that's what really attracted them to the mission. And so she's 80 years old, so she's in a whole different stage of...
And her experience is different than my experience with Parkinson's. But for
them, to have that perspective of being caretakers, its own
[00:28:00] experience with Parkinson's. And so, just a really, amazing group of women
Eric Von Frohlich: Yeah, that has to be comforting to have people who are used to being caretakers or have experience with
Parkinson's. You feel like you could be a lot more open, I would think
Ashley Ellis: Well, and in fact, one of the sisters, She's a physical therapist, and she is accustomed to working with people who have Parkinson's. And so I think she's especially dialed into the symptoms and some of the, results of the disease itself. But one of the things that she said that I love the most, really inspiring to me, is that she says Parkinson's patients are unlike anybody else.
like, I don't know if they're more, type A or determined or stubborn, but they just, they go for it. And I think that was-- it's just a really neat observation for me to hear from someone, like her personal account of what, sort of the common characteristics are.
Eric Von Frohlich: Speaking of observations, that your why is Yes. for life
Ashley Ellis: Yeah.
Eric Von Frohlich: you know, and that's, it's a fabulous [00:29:00] thing to be able to do.
Ashley Ellis: uh,
I mean,
I feel like there's an opportunity, right? Because we know that movement is
medicine, and so I think
if it weren't for the chance to do something about it, maybe I would feel differently. But
because, the medicine treats the symptoms, but
the real treatment for long-term,
you know, slowing the long-term progression is
movement, exercise. And so I
feel like for me, especially when I first learned about it, feels totally, totally out of control, right? But just to have something that says, "Hey, I can do something about it. Let me make sure to do what I can with, making sure my diet is clean, and I'm exercising," and that helps me feel
better. The symptoms start to kind of fade away a little bit in the
moment, and, then understanding that it has the long-term benefit, is really great. But, if it weren't for having something that makes me feel like I have a level of control, perhaps that's part of what motivates me [00:30:00] as well.
Eric Von Frohlich: well.
fighting back in the martial arts world gives you empowerment. Whether you win or you lose is another story, but you come out of it knowing that you've done everything that you can to protect yourself and to take care of yourself, and that's very empowering. So you- you're in the right,
world
Ashley Ellis: There's a poem that I really appreciate that kinda sounds like what you just said, in terms of fighting back and, the outcome is
not within, sometimes within our control. But, the
important part is that we're fighting, that we're in what this poem calls the arena that, you know?
Eric Von Frohlich: I, know it well. Yeah
Ashley Ellis: Yeah. It's one of my favorites, The Man in the Arena
Eric Von Frohlich: is it uh, Teddy Roosevelt?
Ashley Ellis: Yes. I think it was part of one of his presidential speeches. So there's a, there's a map of the Eastern United States. There's a association, America's
Great Loop, Cruisers Associat- AGLCA, and they have this map with the route on it.
And we were talking in one of our training [00:31:00] sessions, so we did this incredible coaching with Don Smith. She's one of the, leading, most recognized and, um,
acclaimed, ocean rowers. And she and Paul, her rowing, mate, just crossed-- It was her seventh crossing. They're finishing now, in fact, today and tomorrow.
But she, and Paul, shared that with us in terms of how to think about our row, in terms of we're fighting for, I think it's appropriate to think about it for our row, but
also for Parkinson's, that we, you know, we fight the good fight. But so what I did was I thought about it in terms of this row is our arena, right?
And on this map, what I did was I wrote the poem, The Man in the Arena, all around the loop itself, so along the line
that goes... Mm-hmm. Just to think about-- And by the way, I changed it to The Woman in the Arena.
Eric Von Frohlich: Right
Ashley Ellis: So, yeah.
So it's
Eric Von Frohlich: so. There's a, there's another poem that I would wanna share with you, which is, , by Constantine
[00:32:00] Cavafy called Ithaca. And
Ashley Ellis: I don't know it
Eric Von Frohlich: It's... I hope you find it as inspirational as the Man in the Arena. It
talks about as you set off on a journey to Ithaca, which is a pilgrimage That the ancient Greeks used to make, you're gonna go to different lands, and you're gonna find different distractions, and the Cyclops is gonna try to kill you, and all these types of things are gonna happen along the way.
And it. just talks about having that goal as a destination, and realizing that the journey is the adventure. It's more important than where you're going. It's, it's the journey that you're taking and the people you take it. with
Ashley Ellis: That's exactly it. I, I think my focus has been on the
loop and, crossing that finish line, and I think what I've learned, even just through the year that we've been training, I've learned that there's so many more goals. There's, you know, making sure that we care for our health, making
sure that we are learning and growing just along the way, and just recognizing, the [00:33:00] opportunity to bring hope you know, to ourselves and just to the Parkinson's community, but even broader, to those who are, affected by Parkinson's but
Eric Von Frohlich: Or any adversity for that matter. It's, it's, you're inspiring people that you may not even realize you're,
you set out to inspire
Ashley Ellis: Well, and, coming back to the HPP mantra of inspire to endure, I mean, you know, that's really part of it. There's an opportunity to feel the fear and do it anyways, and I don't think if we put ourselves in situations or challenge ourselves to the point of something really wondering if this is something that's
even, possible or possible for me,
Eric Von Frohlich: There's a degree of sanity that you have to
wonder whether or not you're in touch with
Ashley Ellis: That's right, and so when we first started, when I first started telling my family about this,
And my friends, some of them were just like, "That's amazing. I love it. It's incredible." And some of them were like, "Are you crazy?"
Eric Von Frohlich: Well, what's the duration?
Ashley Ellis: So all of us are taking time out [00:34:00] of our
lives for this, and so we're planning to depart around mid-March.
And we have, April, May, June, and July.
And so we're gonna be moving, keeping that
boat moving, doing everything we can to get it around that loop, in that amount of time. So we'll be hustling, that's for sure.
Eric Von Frohlich: So you anticipate
on the long side 120 days?
Ashley Ellis: It will depend on weather and the locks. So the lock systems don't stay open 24/7. They close at night, and so we'll be facing some of those. There's
opportunities that, we might have to, connect with communities along the way, and so we're really making those plans to see where that might be useful.
One of the things that we wanna do is to, especially with some of the rowing clubs that are on the waterways, uh, we wanna be contacting those rowing communities and, and saying, "Hey, come out and row with us," even if
Eric Von Frohlich: That would be amazing
Ashley Ellis: Yeah, just kind of like a, a rowing
for solidarity type of thing.
So, we [00:35:00] wanna do all those things, but yeah, we also have a goal to get that boat moving. And so we're moving at a, pretty slow speed. And so if there's no, change of plans or surprises, we can make it in that time. But of course, we're gonna be dealing with wind and tides So we're making those calculations now.
We have a team, that's helping us calculate out, what the tides will do in terms
of affecting our ability to
move, especially in those intercoastal waterways. So that's
where the tidal currents are coming in and out and really affecting,
Eric Von Frohlich: Right? You don't want to be
rowing against the tide
Ashley Ellis: Exactly. Or if we do, we definitely wanna be rowing three up with maybe, some people who have just gotten some good sleep.
Eric Von Frohlich: Exactly.
Ashley Ellis: Mm-hmm.
Eric Von Frohlich: your
nutrition into this?
Ashley Ellis: We're learning about that as well. So I, you know, the thing about rowing around the clock is that we gotta eat a lot of food.
Eric Von Frohlich: Exactly
Ashley Ellis: So there's dehydrated food options. We've been testing those to see which ones we like. And then we're [00:36:00] doing all the things that athletes do, right?
The gels, the
energy. We're making sure we get a lot of electrolytes. But running the calculation for the calorie count is, upwards of, I mean, it's like 5,000-plus calories a
day, depending on your height and s- And I'm, you know, and I'm six feet tall, so in terms of being able to...
the height and weight calculations for how much you need to fuel your body it starts adding up,
Eric Von Frohlich: It's like feeding a teenager.
I have a water polo playing teenager, and we have doubles on every meals. We have the pre-lunch and then the post-lunch and pre-dinner
and dinner and then post-dinner, and it's endless
Ashley Ellis: I mean, when our coach said I could have two breakfasts, I was like, "This is for me," you know?
Eric Von Frohlich: Yeah. it's kind of perfect for someone with Parkinson's in that you get to exercise as much as you want, and then you get to eat as much as you want. It kind of sounds like a win-win
Ashley Ellis: I think that's like the, this is the life I'm, [00:37:00] I'm gonna, you know, I'm gonna live, so
Eric Von Frohlich: So what, was the conversation you had with your husband when
you told him he's taking care of the kids for five months?
Ashley Ellis: By now I think he's used to me coming up with crazy ideas, and he tends to roll with it, and so I appreciate his understanding. And, you know, that's something that, you know, um, that we're working through in terms of the logistics. But yeah, he doesn't have big reactions to me because I think he's accustomed to,
Eric Von Frohlich: We'll have to get him a T-shirt that says, "My
Y is for yes."
Ashley Ellis: That's right. That's exactly right. Yeah, and so I think, it all comes back to the why, like you were saying. And the why in terms of partnering with organizations like the Michael J. Fox Foundation and some of the incredible work that they're doing for research, it really matters.
It matters to how we understand this disease. It matters for, being able to end Parkinson's and so there are some big goals
that those, folks have, and it's just [00:38:00] really
I'm just blown away by the chance to be able to support that and to tell my story as part of, the work that they're doing, at Michael J.
Fox Foundation.
Eric Von Frohlich: Amazing.
Ashley Ellis: Yeah.
Eric Von Frohlich: so I'm, I'm inspired. Your children must be used to, you as well, because if I told my kids that mom was gonna be away for five months,
it's, uh... Will they be able to join you at
different points of your
Ashley Ellis: Ex- exactly. And so we have plans for
that, but it, it's just, it's neat because, one of the things
about, the community that I live in is that we all support each other. I'll never forget when I told the
story about Parkinson's to, the community of, of women, it was just, that live in this neighborhood, it was just really neat because there
was so much support and love.
So, moms and, the families that are nearby, we ha- we have friends and family, so there's, there's a lot there. And so sometimes I think, for my family, sometimes I think I'm an inspiration. Sometimes I think, mom's rowing, taking a
lot of time to row. Yeah, what is she's rowing [00:39:00] again?
So I think it probably goes between that, but
we're just so fortunate to have, um, the support
that we do.
Eric Von Frohlich: Yeah, well that's, the story of Parkinson's is we don't live it alone. We live it with our families, and we live it with our community, and everyone that we've interact with, we have an opportunity to, show them that the challenge of Parkinson's is just a part of life
and it's something that we can, endure and, and work through, and with
enough support and care, we can thrive
Ashley Ellis: I think that's right. I think the challenge
is, a big part of it. I think the uncertainty is a big part of it, too. I think there's, a physical battle, , there's a mental battle. There's certainly, everything going on in, in our brain as a result of, dopamine deficiency, and so it's just-- I think it's just, an opportunity to be able to have hope with each other and just to inspire each other to, continue to, keep going for it, you know?
And, and don't limit yourself, even though it certainly feels like we have a lot of limitations, some more than others. And [00:40:00] so for me, I have gotten louder and louder about it, coming from a place where I wanted to hide and keep it secret and not, share my truth, when I first got diagnosed, just really trying to keep it inside, to a point where I was able to share it more publicly.
And then just really coming into my own voice about saying, "Hey, this isn't okay. Something has to change." And just to be able to be linked with the folks that are on the leading edge of doing that work and that research has been such an honor, because the more I s- I say it out loud and I you know, we're changing the perspective on, the stigma, of it, I think that that's a healthy thing.
But also, doing everything we can to change the course of it as well.
Eric Von Frohlich: Well, It's,
You're certainly inspiring people to say yes to life and to get out and, just challenge themselves to live life. It's no different. Everyone comes to these crossroads [00:41:00] that we have at a younger age at some point in their life You know, you, at 90 you're not what you were at 50, and so that chapter you have to recognize that
This is just a part of life and, it's inspiring that I can meet people like yourself.
Because of this disease and this diagnosis, I've, I've met some of the most remarkable people and it's almost become a gift that, You know, the trade-off of some brain fog and some stiffness doesn't seem to be, such a huge price for the balance of, of all that I've gotten out of it So I've become a better person and more patient, you know, kinder, We, we say, or I say often that rough seas make good sailors. And So you guys are gonna embrace that challenge physically, psychologically, and emotionally, and it's gonna be an amazing story you can tell for the
rest of your life
Ashley Ellis: We have a sticker on our boat that says, "Chosen suffering is a privilege," right? [00:42:00] So I haven't chosen Parkinson's,
it's certainly chosen me. It's a part of my life, but it doesn't define me. But the chosen suffering of this loop, is the thing that, you know, the rough seas will make a good sailor because, we're taking on something and, we're learning and growing in ways that I've never even imagined.
And so, one of the things that I've done even, you know, just thinking about from a rower standpoint, certainly there's groups of cycling and, and boxing and some of the great, opportunities to get into athletics for Parkinson's. I...
It's just such a privilege to speak with someone who, is into rowing, who has Parkinson's, and I think that that's really important. And for me As I've experienced this uncertainty of what it looks like, , what's been exciting is having this experience of the ocean rowing boat and training for what we're doing.
I think that's expanded my mind in terms of flat water versus open water, right? And so one of the things that I've-- was able to do recently is get my [00:43:00] own single, but it's a coastal rowing single. And so then the in-between times when I'm not able to go out, when we don't have a training or whatever, I can take my single, the ocean rowing single, and go out and, experience some of those waters that we're going to be rowing on
and, see what they're like and see what it feels like even just on my own.
And so, as one of the leaders on this team, I have a mindset of making sure that I'm doing everything I can to ensure the safety of the team and, you know, we can't row the whole loop to practice rowing the loop. So just really, getting as much of that learning as we can, and practicing some of those, you know, safety drills together as a team when we're together, but also even just exploring the waterways on my own when I can, is part of what I'm excited to do.
Eric Von Frohlich: Yeah
comfort is The enemy.
We get so focused on being comfortable in order to be happy, and we realize that all of life and all the good things that happen in life is when your boat fills up with water and, you have to flip it back over, or you have to you know, bail it out or whatever it is You [00:44:00] know, it makes you live in the moment. And so that you embrace living in the now is a huge
advantage you have to dealing with this
Ashley Ellis: I think that's true from a physical standpoint, right? Comfort is the enemy, and a mental standpoint, right? 'Cause we're always j- you know, we're growing in strength, physical and mental, and so I think that's a huge part of it. So I feel the same way. It's just such an honor to meet, folks that are, really pushing
That envelope, pushing the barrier and, just really kind of taking the bull by the horns, so to speak.
There's, there's something that, talks about not a bull, but a buffalo. When there's a storm, a buffalo runs into the storm, right? Versus running away. And whe- whether that's because they're like, "Let's just get this over with," or, or they're, like, facing the fear and saying, like, you know, "Hey, I'm not gonna run from this.
I'm gonna run into it,"
right? I think that that's-- Run through it. Exactly right. And so
I think we have an opportunity to do that, as well with Parkinson's and the experiences that we go through, and then just really [00:45:00] relying on each other and, having that community is a big part of it, too
Eric Von Frohlich: Well, this is
exciting. So wha- what's the kickoff date?
Ashley Ellis: We're looking at around
mid-March in 2027, so the clock is ticking. We only have so many months left to get our training in, so we're doing a lot of work to get there. And then we'll be rowing through the summer.
Eric Von Frohlich: And then how do we get the word
out so we can find some extra support for you.
Ashley Ellis: Thank you. So our website is humanpoweredpotential.org. And that is also on Instagram. There's an account on Facebook as well as
LinkedIn. So check out the website. We are Second Wave, Human Power Potential Second Wave,
and so there's a way to donate there. Once we get started with rowing,
There's a way to follow us.
So I hope you can follow along and,
We'd love to, make sure to, have the community, there for us as well, 'cause we're- we'll need the inspiration certainly
Eric Von Frohlich: Yeah,
the support becomes everything, right?
Ashley Ellis: Yeah, when we're tired, when we n- we know we will be, so we're, we're ready for that And [00:46:00] we're preparing for that
Eric Von Frohlich: That's great. So what do you... I mean, I kind of feel like this entire conversation has been inspiration for someone newly diagnosed that this is
something they can deal with. What do you have to say to those people?
Ashley Ellis: It makes me emotional to think about someone who is newly diagnosed, because I just remember how vulnerable that
is. And I just wanna say
there is hope, and it is not over, and this is just , a starting point. And so just keep on moving and just keep on enduring and just connect with a community, connect with people locally or even not locally, even across the country.
But there's hope and, and just keep moving
Eric Von Frohlich: Yeah
the Stoics had it right. The obstacle defines the way, and, you know, you have to overcome it and get through it in order to, define your life. And so it's a beautiful metaphor for what you guys are doing, and I'm inspired to follow the training as well as the, [00:47:00] uh,
The actual journey.
So
Ashley Ellis: We've talked about so many inspiring things, and just there's so many voices out there that inspire. And if it's okay with you, I'd love to just finish with a poem that I was inspired to write when we started this journey and this partnership with
Eric Von Frohlich: Oh, I'd
Ashley Ellis: Is that
Eric Von Frohlich: to, yeah, by all means
Ashley Ellis: It's called Rowing the Ocean of Hope. A team of ordinary souls called by the tide, not for our own glory, but to stand up as a guide. In the roar of the sea where challenges rise, we row together for a cause, hearts unified.
Ordinary hands, extraordinary hearts. We push through the struggle despite where it starts, for those with Parkinson's, for their daily fight. We move with courage, we carry the light. The American spirit that journeyed across the deep carries a legacy which we vow to keep. With Human Power Potential showing us the way, we honor their courage as we journey today.
The winds may howl, the sea may bend, but we have a mission to bring Parkinson's to an end. This disease will [00:48:00] fight back, the tremors are visible, but with movement as our medicine, our strength is unshakable. Parkinson's is the storm, but I am the wave. A ripple of hope, a call to be brave. Our journey is for a cause, rowing under the sun.
With each stroke forward, we have already won.
Eric Von Frohlich: Amazing.
Ashley Ellis: Thank you. Thank you. It, it feeds my soul, and I hope it feeds others, too.
Eric Von Frohlich: I
managed not to cry, although I was really close to it, so
Ashley Ellis: was working on it myself.
Eric Von Frohlich: Yeah
It's funny. I think Parkinson's in a way makes you a little more emotional.
It certainly seems as if, you know, the moments of life that call for tears seem to pop up fairly often, and it's, it's nice to be able to do that with people that, that you feel
comfortable with.
Ashley Ellis: I'm glad to be able to share the journey with people like you