Screening our children for type 1 diabetes, writing adventure books and giving back with Rhodes and Alana Ritenour

Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:00):
This episode of Type one on one is kindly sponsored
by Insulette. More on that later. What I will say
now is that we have a shiny new Instagram page
dedicated specifically to the Type one on one podcast. It's
very exciting, So come and say hi and join our
lovely community at Studio Type one on one. The link
is in the episode description. Hi everyone, and welcome to

(00:25):
Type one on one, a podcast that delves into the obscure,
complex and challenging world of life with Type one diabetes.
I'm Jen Greeves, and each week, with the help of
some brilliant guests, I'll be showing that there is no
normal when it comes to handlink this whopper of a
chronic condition, because we're all pretty much figuring out the

(00:46):
messiness of day to day life with diabetes as we go.
And most of all, even though it doesn't always feel
like it, we are absolutely not alone. Rhodes and Milana
written our are not your average couple, not your average attorneys.
They're also characters of their own book series, The Adventures
of Rhodes and Alana. One page at a time, eight

(01:08):
year old Roads and his best friend Alana explore what
it means to be a child with a chronic condition,
turning the challenges of titewan diabetes into intrepid adventures. And
today we're going to dig into how the series was
inspired by Rhodes's own journey with tite one diabetes after
he was diagnosed in the eighties at just five years old.
But first let's say hello, welcome both of you to

(01:29):
the podcast, and thank you so much, Roads and Alana
for joining me.

Speaker 2 (01:32):
Oh, it's terrific to be here. Jen, thank you so much.
It's an honor to be with you. It was a
pleasure to meet you in Amsterdam. And thank you very
much for having us on your podcast.

Speaker 3 (01:40):
We're so happy to be here. Thank you. That was
a wonderful introduction.

Speaker 1 (01:43):
Oh good, I'm glad you liked it. I wrote it
all by myself. First test done. Did I get your
surname right as well?

Speaker 2 (01:52):
Crushed it? Thank you great.

Speaker 1 (01:54):
I like to check. And you're joining me from Richmond
in Virginia today, which is very excited and it's not
every day I get to speak to two book characters either.

Speaker 3 (02:06):
Well.

Speaker 2 (02:06):
We have loved our work in the diabetes space. Obviously,
it's a project of passion for us being involved in
that community, but then also our children's book series, and
we launched it about four years ago. Alana and I
both were practicing law and were very busy, and Alana
wanted to retire for several reasons, but the primary focus

(02:27):
was to work on our children's book series.

Speaker 3 (02:29):
Yeah, this is something that we've talked about doing.

Speaker 1 (02:33):
Wow, really for years? Was it something that had been
in your mind?

Speaker 2 (02:37):
It was. We had actually written transcripts about twelve years
ago and put them on the shelf, and every once
in a while we'd pull them off and work on
it very vehemently for about six weeks, and then a
major life event would happen, we would change jobs or
have a child, and they would go back on the shelf.
And finally, when our children were eight and six, respectively,
we realized that if we don't get these books out now,

(02:59):
we probably never will because they're the target audience. We
can talk with their friends, and probably what's been most
fortuitous is they've been an internal focus group for us,
and so we really felt like we needed to get
them out. So we published book number one, School Bus Secret.
About three years ago. We published Bully Blues, our second

(03:19):
book in the series. Last year and in about three weeks,
so certainly in May of this year we will have
Zugo's Wild will be our third book in the series.

Speaker 1 (03:29):
Very exciting, and Alad has just showed us. For those
who are watching, you can see the beautiful cover and
the beautiful illustrations as well. And you were telling me
that the actual physicality of the characters is part you,
part your children, which I just absolutely love. How was
it seeing those books for the first time in the flesh.

Speaker 3 (03:49):
If you like, oh, it's just incredible, it's so so fun. Yeah,
our children, because they were the age of our characters,
who are eight years old in second grade. In our stories,
they had images of our children as eight year olds,
and we really wanted to meld our looks so you
could recognize Roads and Alana's physical features. Trying to here,

(04:11):
here's a sneak peak of book three and Roads and
Alana's physical features, so you would recognize it as us
and we could really tell the story had we met
at eight, what our adventures would be like with Rhodes
as the type one and Me AS's best friend. But
we wanted modern characters, right, so we showed our illustrator
pictures of us in the eighties and maybe not the

(04:32):
most relatable dress and look. So then we also provided
pictures of our children and literally the outfit that Virginia
wears in our first book, School with Secret, she wore
to her first day of second grade, with the knee
socks and everything she loves bright colors. She's head to
toe pink. And then the story, Rhodes talks about this

(04:54):
new girl in school that he just met and she's
running up the street and she looks like bubblegum bouncing
down the road because of her pigtails and her pink top.

Speaker 2 (05:02):
Well, and the other thing that that's great too is
my our son looks a lot like I did when
I was eight years old anyway, So getting a giving
a picture of me today and a picture of him,
then you can see the similarities, to be sure, and
we as you, as any reader of the books will notice,
we were very adamant about the bright colors and the
and the wardrobe because it's not only how we dress,

(05:24):
but also once we now that we have our series established,
one of our goals in our business plan is to
ultimately launch a clothing line that will match exactly what
the characters are wearing in each book. So the idea
would be that you could buy book two and have
the outfit that a lot of wears in Book two.
Uh any in both a child's size and an adult size,
so you could you could twin if you wanted to.

(05:45):
But but that's really another story for another day. But
that's why the illustrations are so distinct in our books.
But you know, Jen, the thing it's interesting is we
didn't know each other when we were eight. We didn't
meet until we we finished law school. But the story
of us as eight year old in the fictional series
is much like the story that we live today, with

(06:06):
me trying to manage type one diabetes day in and
day out, and a lot of being my best friend
and support person who's here, who wants to hear about
what I'm struggling with, who wants to help, and so
we're trying to be emblematic of that in each of
the books.

Speaker 1 (06:21):
Yeah, that's absolutely wonderful, And there's just so much in
that I wanted to ask you later, but maybe I'll
ask you now. What was out there for you as
a young child in terms of being able to find
ways that felt relatable to learn about your condition, was
there anything because we have superhero comics, we have whole

(06:44):
Marvel worlds. But getting that information about type one diabetes
about something that you need to know about because it's
your life. As you say, the fashions change and the
friendships evolved, but tite one diabetes is absolutely constant, as
you know, and as I know, and as I imagine
everyone listening knows. So for you as a child, what

(07:06):
was out there for you to kind of relate to
in terms of your type one diabetes?

Speaker 2 (07:10):
Not very much. I was diagnosed about three weeks into
kindergarten as a five year old on October tenth, nineteen
eighty three. And back then they kept you in the
hospital for two weeks till they felt like you knew
how to manage the condition with your parents, and then
they sent you on your way. And there may have
been a one off book, you know, Sally goes to
the hospital or Johnny gets diagnosed with type one diabetes,

(07:34):
but there was certainly no book, TV show, comic book
that had a character who had type one diabetes and
was living life to the fullest. So that was certainly
a motivator for us to get the series started and
get it out in as many hands as possible, and
even today, we haven't found a series that's like ours

(07:55):
that's focused on children who need to be read to
because they're still so young, but also a chapter book
with each page illustrated that can be really interesting for
someone who's just learning to read later in elementary school.
And a market that we didn't expect was Type two.
Grandparents have seen have been buying the book and reading
it too their grandchildren to help them understand about their condition.

Speaker 3 (08:18):
And an audience that we knew we were targeting. Raising children.
We see that every family deals with something, whether it's
a different chronic condition, food allergies, behavioral struggles, emotional struggles, anxiety, autism.
You have children that are dealing with issues that make
them unique, that create challenges, but also are things that

(08:41):
their friends should learn about and they should learn how
they can be supportive and helpful. And so we really
felt like if we could introduce a relatable character with
Type one, which we really think it was for the
first time that children, a broad audience of children would
appreciate his struggles, would learn a little bit about Type one,
but also would relate and see themselves in this character

(09:04):
that's really trying to be positive, persistent.

Speaker 2 (09:08):
With his management, proactive.

Speaker 3 (09:12):
But he struggles.

Speaker 1 (09:13):
You know.

Speaker 3 (09:13):
In our first story, the story goes that Rhodes is
meeting Alana for the first time, and he has that
internal dialogue as an eight year old, which so many
children do. Should I tell her? Is she going to
be grossed out? When I prick my finger here on
the street? I think my blood sugar's dropping? And the
first story, he's not on a CTM. He's got to
prick his finger. She's will she help me? Is she

(09:33):
going to run away? I mean really basic second grader
type thoughts, and he ultimately says, look, if she's going
to be my friend, she's got to know about this,
and so I'm just going to tell her. And thankfully
in the story, Alana embraces it the way you would hope.
She's curious, she's amazed, she's impressed with what he does.

(09:56):
She wants to learn more about it, and she really
wants to be helpful, and she soaks when she gets
to provide the snack, like, oh, you need something for
your blood sugar? Here, I've got something.

Speaker 1 (10:05):
Do you want this?

Speaker 3 (10:06):
So it's a story that we hope will play out
with friends and friendships.

Speaker 2 (10:11):
Yeah, the idea really is to normalize the chronic condition
and educate about it, but also show that you can
with the right support and the right friends around you,
you can live life to the fullest. And while our
lived experience as diabetes, it is emblematic of any chronic condition.
And we actually address bullying in book two Bully Blues,
And you know, like Alana say, if you're asthmatic, or

(10:32):
you have food allergies, or you're on the spectrum, that
could be you. Roads could be you as well. And
in book two it turns out that the young baseball
teammate who is bullying Roads for having to take breaks
to check his blood sugar and get snacks and see
his parents ends up having a food allergy.

Speaker 3 (10:49):
Yeah, don't give too much away because we want her
audience to buy the.

Speaker 2 (10:52):
I should have given a spoiler alert, but I actually,
you know, gave that much away, but I didn't say
how it ends. I didn't see how onions.

Speaker 1 (11:00):
Yes, and I mean to buy the book for all
of these reasons. And you mentioned there about it being
second grade thoughts, but actually these are thoughts I still
have when I'm introducing quote unquote my type one diabetes
as part of me to new people I'm meeting when
I'm traveling, or I've talked about it through dating endless times.
That is another podcast in itself. But you have to

(11:24):
bring this into the relationship because it is a big
part of your life and opening up those conversations, like
you say, whether it's type one diabetes or something else,
normalizing those conversations is such a powerful message. So congratulations
to you guys on that, and also just something that

(11:45):
universally resonates, I think, which is incredibly helpful. So it
really struck me how prominent Alana as a friend is
through these books because it's Rhodes's condition, of course, but
as I just said, like there are other people impacted
by this. You know this well, Alana as the partner

(12:06):
of someone living with type of diabetes, I think it
can be quite a tricky thing to address for the
person living with it, to articulate those needs. I'm wondering
in relation to how you guys met, whether you can
tell me a little bit about how diabetes was brought
into the conversation.

Speaker 2 (12:26):
Yeah, yeah, absolutely true.

Speaker 3 (12:28):
When we first met, I knew nothing about diabetes. Let alone,
type one diabetes, autoimmune conditions. I didn't know anything about
what the day in India out management. And actually there's
a funny story because early in our dating life, I
invited Rhodes to come meet my parents and he came

(12:48):
and had lunch at our house and my family and
my parents they didn't know anything about it either. And
during lunch, his pump was going off and it was beeping,
and then he was checking it and my mom me
aside into the other room and she said, why is
he constantly on that pager? You know, drug dealers are
on their pagers all the time. And I was in mom, Mom,

(13:09):
I think it's okay. I don't think he's selling illegal drugs.
He told me it's an insulin pump, and I don't
know why it beeps constantly, and I don't know how
it works, but I assume he needs to check it
while he's eating because it has something to do with
his blood sugar. And that's all I knew. And so
then years go by and I need to learn everything

(13:31):
there is to learn about it, and you know, you
talk about dating and marital decisions, and I've been asked before,
what did you what did you think about making that commitment.
Did it make you question whether you wanted to move
forward in the relationship, whether you would take this on

(13:52):
for a lifetime. And honestly, my impression of Rhodes was
that his Type one diabet made him who he is,
helped to make him who he is and makes him
someone who is formidable against anything that life would throw
at us. Because is he perfect in his management? No.

(14:14):
Does he struggle with his management, yes, but does he
for the most part keep a positive attitude and is
proactive and he doesn't let it stop him. I thought, well, gosh,
this he's gonna be a good partner because he's not
gonna let things slow him down or stop him. And
so at the end of the day, it was a

(14:36):
positive thing that made him who he is.

Speaker 2 (14:41):
Yeah, I mean, I feel like there's I've always tried
to really remain positive, and thank you for saying that.
I think there's a special place in heaven for Type
one parents and those who choose to marry a type one.
But I think it's easy for me as a person
who's always had incredible support, always had access to the
latest and greatest technology, always been ensured to be positive,

(15:04):
and I realize it's awful easy for people who don't
have those privileges to not be positive, but for me,
because I've been privileged to have those luxuries and it's
helped me stay positive. I've also been blessed not to
have any complications, and so I've been able to sort
of discern certain parts of my life and certain characteristics
that I have that I have not in spite of diabetes,

(15:30):
but because of diabetes. And I know, Jen, you've lived
with it for some time, thirty years, it sounds like,
and you have to learn self discipline, you have to
learn mental and physical toughness, you have to learn perseverance.
There's just a lot of skills. And that's another book
for another day that we're working on actually, but that's

(15:50):
sort of the way we've tried to sell it to
our children and sell it to our friends and family,
that you can take a negative and you can turn
it into a positive if you really look it the
right way. And fortunately for me, I'm very blessed. That's
how Alhna looked at it from the get go.

Speaker 1 (16:05):
It's just really beautiful to hear you two talk about
each other in this way. I actually have quite a
lot of listeners who have been diagnosed as adults, so
they're learning this new lexicon for themselves, this new life
for themselves that looks very different to the one they
were used to living before, and to introduce that to

(16:25):
other people is very hard. As I said, I still
do that because I'm freelance the nature of my life.
I introduce myself to people all the time. And I
think that's so reassuring for people who are new to
this or are adapting to it to hear. And it's
so beautiful that you guys have that for each other

(16:46):
as well and have spread that through the community and
the family and friends impacted, because it isn't just us
in this, like you say, the parents, the friends, the
wider family, grandparents, all of that.

Speaker 2 (16:58):
You know, it's really we hear from people quite often
about diagnosis as you're a child versus an adult, and
we're seeing, of course, a proliferation of adult diagnosis, which
no one's exactly sure why that's changed so much, but
it's the fact of life. And on one hand, if
you're diagnosed like I was at five, I certainly have
memories that were pre diabetic memories, but not many, not

(17:21):
many in their fading, and so this has always been
a part of my life for the most part, And
so on one hand, as an adult, it's sort of
a easier to manage and easier to talk about because
you don't really know any other way. Of course, you
kind of wish you'd been diagnosed as an adult because
you could have had all that life without it and
you're at greater less risk of ultimately having complications. But

(17:43):
when you're diagnosed as an adult, or I think could
be even worse as a teen, when you're dealing with
all the other things that teenagers have to deal with,
it's really difficult because you know how to live another way,
and you know how to introduce yourself in another way,
and having to always have diabetes be such a part
of your life and an integral part of you and
having to nuance and change into that, I can understand,

(18:06):
would be very difficult, which is versus me. It's always
been part of me, and I know it's probably not
politically correct in some circles to refer to a person
as a diabetic because there's so much more and they
shouldn't be labeled as their by their disease or their
chronic condition. But I'm proud to call myself a diabetic
because it's such an integral part of my life and

(18:27):
it's part of who I am.

Speaker 1 (18:29):
Yeah, I can really relate to that as someone who
has lived with it for a large percentage of their life.
But also, you know, we're here. It's kind of made
me who I am. All those things you talk about, resilience, adaptability, empathy,
the awareness that everybody has something. I don't dismiss the

(18:51):
realities and the challenges and the times that makes me
so afraid. But there is so much other stuff as
well that I don't think I would have acknowledged for
myself or developed for myself without type one. So this
probably is a good point to take it back to
your diagnosis, if that's okay. Rates. I don't know if

(19:12):
you remember much about that time.

Speaker 2 (19:14):
Actually, I was very fortunate. I did not go into DKA,
but I did have all the telltale symptoms I was,
But luckily my parents were just on it and we
caught it soon enough that I wasn't technically in DKA.
But I was going about my business, very active five
year old kid, and I was going to the bathroom
a lot. I was drinking a lot of water. I

(19:35):
was lethargic, I hadn't really lost any weight yet, and
my parents took me to the pediatrician.

Speaker 3 (19:41):
And we're wedding the bed. As a potty trained kindergartener
who was going to school and was very capable of that,
your parents noticed that you were consuming so much water
that you wet the bed a couple of nights, and
so it was just sort of an ordinary let's take
you to the pediatrician because something seems off.

Speaker 2 (19:59):
Yeah, there's actually funniest side about that. When I started kindergarten,
apparently each family was asked to put send in a
bag of clothes for their child in case their child
had an accident at school. And so my parents had
sent in just some you know, awful clothes that I
would never wear because they didn't expect I'd ever have
to wear them or that I would, and they didn't
expect to ever get them back. And so there's very

(20:20):
few pictures of photographs of me at that time in
my life. People have asked us who are who are
doing podcasts or doing public publicity for our books, Hey,
do you have any pictures of you as it newly
diagnosed kid? I think there's one I'm sitting in my
hospital bed with a bunch of flowers around that people
sent and for some reason, there's a naked baby doll
in that picture. But we found a picture the other

(20:43):
day when we were going through some stuff of me
with a red shirt, a red plaid shirt on and
these just awful orange plaid shorts.

Speaker 3 (20:53):
And they're like six sizes too small.

Speaker 2 (20:55):
Six ties is too small. I look like a Vienna sausage,
and so the well, so then we looked at it,
and we looked at the back of it. In the
back of it said October nineteen eighty three, and so
I had been to school and had wet my pants
at school and had to use the shorts that my
mom had sent in that were awful and didn't match
or anything. And that apparently when we got home, for

(21:17):
some reason, they took a picture of me, and I
have that is my second picture of the diagnosis period
of time. But that was another thing that was I
wet my pants at school, which I had never done before,
and so my parents took me to the pediatrician. The
preediatrician took my blood sugar. I don't know what it is,
what it was I wish I did, but he knew

(21:38):
right away that it was probably type one diabetes. We
did not know what that was. We didn't know the symptoms.
We just knew something wasn't right, which was the impetus
for us to go see him. And he said, you
can't even go twenty minutes home to get your belongings.
I need you to go right across town to the
hospital now. And so that's what we did, and they

(21:58):
kept us for two weeks, and we had a parade
of doctors and nurses who came through who are terrific.
I still see some of them today, forty one years later.
But with the thing that I remember mostly was probably
that my mother was a school teacher, and so there

(22:19):
was a parade of her colleagues that came by to
see us during those two weeks, and some of her
students came by to see us too, which was really meaningful,
and much like in the book when Rhodes first meet
Solana in Book one, I had no idea how I
was going to be received when I went back to
kindergarten because some of these kids I had only known
for three weeks before I had to leave for two.

(22:41):
But I was just welcomed back with open arms. They
had made banners to welcome me back. There were balloons,
and I was just so embraced. And I'm blessed to
say that I have had very few interactions in forty
one years of people who weren't supportive, who bullied me,
or I can't remember being bullied. And the coaches and
the teachers and the guidance counselors and the school nurses

(23:01):
were all terrific. So ultimately got back home. And the
thing that I that I remember most, and this last
year when I was chairman of the had the privilege
of being chairman of the National Board of Directors for
the American Diabetes Association. I told this story a lot,
which is I had to check my blood sugar regularly,

(23:22):
and we had a vial of test strips, and so
you'd pull a test strip out and you'd stick your
finger with a really wide needle, and you would put
a glob of blood on the test strip, and my
mother had to look at her watch for a minute,
and when a minute happened, you would take a cotton
ball and you would take the blood, dob the blood

(23:44):
off of the tip strip. You would wait another minute,
and then you would turn the vial over, and the
vial on the back of the veal had four or
five colors that all represented a range of blood glue
coats of about forty or fifty points. So if it
was blue, it may be somewhere between one forty in
two hundred. You know, if it was red, it may
be somewhere between two hundred and two fifty. So if

(24:04):
you managed to do all those things right, you only
knew within about fifty points of how how your blood
sugar was. My mother actually went to a local jeweler
while I was in the hospital and bought a watch
that had a second hand so she could do this
for me. Fast forward to when I was out of college,
the technology had certainly changed a lot. I was still

(24:26):
doing shots and sticking my finger when I got out
of college. But then fast forward to today, where I
wear an insulin pump and have a continuous glucose monitor
that's reading my blood sugar every one to five minutes
and conveying it to my insulin pump, and then my
insulin pump clicks into action. It's been shocking and it's
amazing to see how the technology has changed. Thanks to
the good work of organizations like Breakthrough t one D

(24:48):
and the Ada ATTD that we are where we are.
We still need that alusive cure to be sure, but
we've come a long way.

Speaker 1 (24:57):
Yeah, it really plays my mind and it still does.
What was your day to day?

Speaker 3 (25:03):
Like?

Speaker 1 (25:03):
I'm just curious because as you describe those stories, obviously
it's so different to what we deal with today, Like
you say, looking at our phones and things like that.
Did you have a very strict regime? Did you have
to eat the same things every day? Obviously these fingerpricks
took minutes rather than seconds. Do you remember moving through

(25:24):
school and what that was like.

Speaker 2 (25:27):
I remember having a lot of alcohol pads everywhere because
my hands were seemingly always dirty and we needed to
check my blocher all the time. On a baseball field,
on a golf course, wherever we happen at.

Speaker 3 (25:37):
School, you still like to play in the dirt, there
were a lot.

Speaker 2 (25:39):
Of alcohol pads that kept my fingers clean to stick them.
I remember that my parents were always always had snacks
for me. They wanted me to be self sufficient from
a very early age, so from about five to twelve
they were very involved and then my pediatric innocronologist an
incredible human being from the University of Virginia Medical Center,

(26:02):
doctor Bill Clark. He said, when I was twelve, I
had to do it all on my own, and so
basically from that point forward, my parents were certainly there
to help, but I ran to show myself and it
was just a matter of taking shots when I needed
to and sticking my finger when I needed to. As

(26:23):
we've said a lot in our diabetes support group, which
we founded in twenty ten, diabetic diet and diabetic protocols
are really good for the whole family. So my mother
and father ate what I My brother's twelve years older,
and when he was around, he ate like I.

Speaker 3 (26:42):
Can comment on this because I'm the cook in the family.
I wouldn't call myself a chef by any means, but
I enjoy it and I have always been interested in
nutrition and healthy eating, and so this was something I
was happy to take on. And it has been a
little bit of a challenge with Rhodes to get him
outside of the box, because I do think you and
your family must have had routine in when you ate

(27:06):
and what you ate, because roads will literally eat the
same thing for breakfast lunch and probably dinner. And when
I first met him, he literally ate the same thing.
There's a rap he would make, like with a low
carb rap with Deli meat and cheese and maybe some
lettuce and heat for lunch. Every single day. He wants

(27:29):
his you know, higher protein yogurt every morning. And then
for dinner he would make himself a salad. And he
would when we first started dating, and he'd say, come
over for dinner. You know, you assume that if you
come over for dinner on a Monday, and you come
over for dinner on a Thursday, maybe you would eat
something different. Well, when you came over with roads and
he said, do you want to have dinner with me,
we would eat the same. I mean it was like

(27:50):
Groundhog Day every time you came over.

Speaker 4 (27:53):
And he said, you know, I baked chicken on Sunday
night so that I have it for the week, and
then I make this salad and he would rough cut
up vegetables and he would have this giant salad that
you would eat out.

Speaker 3 (28:04):
Of a mixing bowl. Oh that which she was, you know,
its own issue. But he would create this massive salad
of vegetables and this chicken, and he was delighted to
eat it every single night. And I think it's the
routine of I know how many carbs are in this,
I know how my body handles it. And I suspect
when your mother would see that your blood sugar was

(28:27):
in a decent range after a certain meal, she would say, Okay,
we're wropping.

Speaker 2 (28:31):
That meal must have worked.

Speaker 3 (28:32):
So you eat the same thing. And that's true.

Speaker 2 (28:35):
And the other thing, Jim, what you'll appreciate is in
the in the eighties and nineties, it was not it
was not a carb counting movement. I didn't know about
carb counting. I didn't hear about it. I didn't have
that anything.

Speaker 3 (28:47):
It wasn't on the back of food packages.

Speaker 2 (28:49):
I did not have that inculcated until I was out
of college. And it was about sugar. And so oftentimes
our plate was a vegetable, a small starch, and a
lean protein. And it looked, you know, and it looked
everything was the same color. You know, there's a chicken breast,
there is a doll, there's a half of a baked potato,

(29:10):
and there is a cauliflower cauliflower. And so you were
talking about trying not to eat sugar. Whatever that means.

Speaker 5 (29:20):
So when I started introducing like exotic things, you know,
like my feelies ucradiated. So we occasionally eat beets and
he was like, ooh, what's that rednus Indian food Asian
stur fry.

Speaker 3 (29:32):
You were like, I'm not sure about this.

Speaker 2 (29:35):
But no, it's but it's all been great, and of
course it's now it's easier to manage this. We count
carbs and we have our pumps. But we would never
have thought about and I think about all those years
that I wasn't managing as well as I could because
I didn't have that knowledge. It certainly wasn't my parents' fault.
Maybe it wasn't even my fault, but because we didn't
know any better. And I will say that you ask

(29:55):
about the day to day, the most difficult time for me,
the highest A one c's I had were during puberty
when hormones were changing. I don't know that I was
ever really pushing back on the disease and really not
sort of doing what I was supposed to, but it
certainly was a period of time where I was focused
on other things and had a lot of distractions. And

(30:18):
so I would say from like eleven to fourteen was
probably the time where my control was not nearly as
good as it was up to that time and after.
I don't think I ever rebelled against management, but if
there ever was a time I was close, it was
probably then.

Speaker 1 (30:32):
Yeah, there's just so much that resonates there. We don't
know what we don't know, the lack of carb counting.
When I was diagnosed, to your point about the sugar
versus carbs, I was told in the same breath that
I could never eat sweets again, that I had to
eat a seventy percent carbohydrate diet. So the logic there,

(30:53):
even from the professionals, to see how far that's come
now is quite incredible. That's what I was advised. I
had to starchtarge my way through life, but no sugar.
But as we know now, starch ends up with sugar
once it's broken down by the body. So it's really

(31:13):
interesting to hear. And equally with the hormones. That's sort
of where my path went, similar to yours, probably further away,
but I was just doing what I'd always done, but
I was living in a completely different body by the
time I was seventeen eighteen, you know, with the hormones
and everything, and the regime that I'd had since I
was a child didn't fit me anymore. But I was

(31:35):
still doing the same thing, So I had the same
understanding as you that I quote unquote thought I was
doing the right thing. I certainly wasn't prioritizing my one diabetes,
don't get me wrong, but it really resonates there what
you're saying. What you did mention was your positive outlook
and the support you've had since you were diagnosed at

(31:57):
that young age. Do you think you know you speak
about the baseball and obviously you've gone on to have
an incredible career. Do you think that the attitude of
the people around you and the adults when you were
diagnosed and through your childhood year has contributed to that
in the sense of it not holding you back and
you've been quite accepting of it and being able to

(32:19):
go out and go after your dreams and your interests
and your hobbies and your sports alongside living with type
one diabetes.

Speaker 2 (32:26):
I don't think there's any question. I think that the
acceptance of people I admired of me as a diabetic
inspired me to not feel different or disadvantaged or out
of the ordinary or weird, and so it just allowed
me to be be a part of me maybe what

(32:46):
made me different in a positive way. But having that
around me really inspired me to try to treat others
who are different, treat them well as because of the
way they witness to me. But I think that if
I had had a probably even one, certainly a handful

(33:06):
of people who had made me feel less than equal
or it made me feel different and as an outlier,
I think it would have probably had a negative impact
on my positivity and a negative impact I would on
how I managed the disease. It would have made me
wish I didn't have it more. It would have made
me want to hide it from other people so they

(33:27):
wouldn't bully me. It would have made it would not
have a lot empowered me to start volunteering with the
eighty eight at an early age, to get other people
to talk about it, or go to camps or walks
where there are other people who are dealing with the
same thing that's so important for you to have those
kind of conversations. It would have probably pushed me into
my shell, but instead it pulled me out. And I

(33:49):
think there's probably a lot that you could point to
me being an extrovert. It empowered me to be an
extrovert to talk about my diabetes. In all things, it
never inhibited me from talking about other things because I
have they have this underlying condition.

Speaker 3 (34:02):
And I think I think credit is also due to
your parents, because I don't know this is a product
of just your parents parenting styles in the eighties. But
they expected everything of you that they expected of your brother.
And they expected you to continue doing your chores and
continue prioritizing your life. And you loved golf, and you

(34:22):
traveled and did went to golf tournaments. And there was
never a discussion that you weren't going to be able
to do that, or you weren't going to participate in
all the sports. You weren't going to play high school baseball,
You couldn't be a picture if you wanted to do.
It was just you will do those things, and you
will have all the expectations of you know, working your
hardest in school and in life and going to church

(34:45):
with us. And it was it was never allowed to
be an excuse.

Speaker 2 (34:51):
Or justification for not doing something.

Speaker 3 (34:53):
Yeah, it was.

Speaker 2 (34:54):
It was really And you're right, they do deserve a
lot of credit for that it was a it was Look,
if you've got to be your best in school, you've
got to do your best in sports, whatever it is
you're doing. And if it means that you have to
prepare more because you've got to manage your diabetes so
that you can be at your best on all these
other fronts, that's up to you and you've got to
be the one to manage that. And so by them,

(35:18):
it's like a lot of things. If you said a
high expectation on a kid, they're probably going to meet it,
if not exceed it. And I think that's probably there's
probably a lot to be said for that. And I
think that that expectation that they put on me to
manage my disease so that I would be ready to
manage these other parts of my life, as we said earlier, Jen,
it's taught me to how to try to take that
same tact to other components of my life, our marriage,

(35:42):
raising our children, practicing law, working for a health system,
volunteering in the eighty eight in the diabetes space, whatever
that is. I think probably all started with hey, kid,
you got to manage your disease so that you can
be effective in the other fronts, and so we still
try to do that today.

Speaker 3 (35:58):
And I'll just say there's some component also view of
not always expecting perfection. Like I think something that you
learn and you can probably relate to Jen is you
could do everything right in a day and you ate
the right breakfast, you got up an exercised, but then
you had a stressful zoom call and all of a sudden,
your blood sugars through the roof and you're like, what
the heck, how is this happening? Or you know you're

(36:19):
you're getting sick, and so your blood sugar spikes, and
so there is also that component of Okay, I tried
my best and at some point I just can't. I
can't fix this. I'm just going to be high this
afternoon and I'm going to have to deal with it.
And so it's also a relatable lesson in your life
hasn't been perfect.

Speaker 1 (36:37):
You haven't.

Speaker 3 (36:38):
You don't crush everything. You're amazing, you don't crush everything
in your life, but you learn to sort of accept
it and say, I'll maybe I'll get it on my
work hard and I'll maybe I'll get it next time.

Speaker 2 (36:49):
And I think it also also compels you to put
a higher standard on other people. Hey, you know they
don't have a chronic condition, so they should be at
their or they do have a chronic condition and they're
empowered to manage it and be at their best. But
it also while holding people to a high standard and
expecting a lot out of them, you also give them

(37:10):
grace because you realize that something could be going on
in the background, something could be going on at home.
They could have missed their meds, they could have not
afford their meds, whatever it is. So you expect a
lot out of people, which is what the attack we
try to take with our kids, but you also give
somebody grace if they can't quite get there.

Speaker 1 (37:26):
Yeah, beautiful messages. Side note, I really hope this is
one of the zoom calls that's raising left.

Speaker 3 (37:32):
No at all, No, not in the least. This is
good for our souls. Conversations with you same absolutely stape.

Speaker 6 (37:43):
This episode of Type one on one is sponsored by Insult,
the makers of Omnipod tube free insulin pump therapy. I've
personally used POD therapy to manage my type one diabetes
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(38:03):
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Speaker 1 (38:23):
I'm curious, as you're saying all this a lot of
how this has shaped you as someone who is taking
this on as well, and you have children, how like
what you've learned through being with Rose, Because there's so
much in this and you guys are such a team.
I'm just curious for the parents that are listening or

(38:44):
the partners that are listening. From your point of view.

Speaker 3 (38:47):
Well, it's thank you, it's Parenting is one of the hardest,
is the hardest job I've ever done, and there's no
question in that, because you want to raise good little humans,
but you realize they see everything you do and they
absorb everything that's around them, and we're not perfect, and
we try hard, but they see all the successes and

(39:10):
the failures. But I do think one thing that we've
made a point of doing is having them be a
part of life with diabetes. So and Roads is especially
good at this. He you know, they've seen him checking
his blood sugar, they've seen him putting his insertion sites in,
they see him making food choices, they see him having

(39:34):
lows and having to tell the people around him I
can't talk right now, hold on, I gotta treat this.
I'm not feeling so hot. And it's part of their
experience that they are learning that it's possible to live
with this disease and manage it, and it requires a
lot of work and a lot of preparation. So I
think that's good that we try to involve them in

(39:59):
life with diabetes. And it's caused me as a parent
to say, as we were going down the road of
having children, realizing that because we have a parent with
type one, our children are significantly more likely to develop it.
It's something that I've always had in the back of

(40:19):
my mind that if I can ease the transition in
any way by giving them some tools, then you know,
you see, the children that are mad, are just angry
at this disease, and you've robbed me of the life
I had before. So if I can give them some tools,
we talk about carb counting. So it's just kind of

(40:40):
a part of our ordinary discussion. When child says, Mom,
can I have another cookie? The first question I ask is, well,
what's the serving size? And so they at seven years
old could check a box and say, oh, it's two cookies,
and I already had two cookies. Yeah, but you already

(41:02):
had two cookies that you know, and we know how
many carbs are in that, So that's let's let's let's
go have something else. And so then they're already thinking
in terms of how can I do that equation? You know,
a serving size is this, that's how many cookies I get?
How many carves in that? And so that I'm thinking,
then it would it would be easy to do that
next step of I need X amount of insulin. So

(41:24):
whether that ever occurs, and they will need those skills,
whether either child is ever diagnosed, it's because there's some
normalcy to the life with type one, and again they're
good skills. I think I'm making this child have a
healthy respect for a healthy lifestyle. So exercise is important,

(41:47):
Eating in moderation is important. Eating a colorful, healthy, low
carb diet has its advantages. So there are so.

Speaker 2 (41:55):
Many sugary drinks are literally off the table.

Speaker 3 (41:58):
It's the positive things that we can bring to their lives.
And they silly junk and they eased. Your basket still
had candy in it, So we're not we're not trying
to keep them from experiencing things like Rods has never
had cotton candy? Do you think that's weird?

Speaker 1 (42:14):
Never had it as a brit I don't think it's weird,
but I'm not sure if that translates across the ocean.

Speaker 5 (42:22):
Everybody, almost everybody, the American child has had a big fluffy.

Speaker 2 (42:26):
And they have it all over their face and down
their arms. But almost everybody that I've said I've told
that to a person has said, you're not missing out.

Speaker 3 (42:34):
A say that.

Speaker 2 (42:35):
Adults say you're not missing out as much if they're
if you hadn't had another have you had it?

Speaker 1 (42:41):
I have had it.

Speaker 7 (42:42):
I actually remember the first time I tried it, because
it is something you see in the movies all the time,
and I think there was a fair or something here
and it was then my dad was like okay. I
remember just being a bit like okay, okay, like having
the ice cream, yeah yeah, yeah yeah, And I.

Speaker 3 (43:01):
Knew about cotton candy recently. Actually it's so much air,
there's so much fluff that the amount of sugar carbons
from sugar is actually much less than you would expect.

Speaker 1 (43:11):
Oh, so we got to watch out for the high
pos on that one.

Speaker 2 (43:15):
Yeah, you're right, your bowl is too much for cotton candy.
Then you might have the bottom might fall out, But no,
their situational awareness is very high when it comes to diabetes.
What I need to do, what Alana does for our family,
and were very much all in it together. And you
know they do heartwarming things all the time. Like Rhoades had,
I actually have it right here on It just happened
to have it here on my desk. He had an

(43:37):
assignment at work at school that said, if you had
one hundred dollars and you couldn't keep it, what would
you do? And he wrote, if I had one hundred
dollars and I could not keep it, I would give
it to a place, a place called JDRF to help
cure my dad's Type one diabetes. Then I can tell
other people that they should donate to JDRF.

Speaker 3 (43:57):
Now breakthrough too.

Speaker 2 (43:58):
Then the scientist might found out. Then the scientists might
find out a cure and we could celebrate and and
he he did that. We didn't, we didn't prompt him
to do that. And actually last year, Virginia Grace had
a similar assignment. It was a reading comp assignment where
they were given certain facts and they had to write
a little story and it was a genie in a bottle,

(44:19):
and she said that she would use one of her
wishes to cure diabetes. And I actually opened up my
last board meeting as chair of the ADA with that
story because she actually had apparently read our children's books,
because she said that she wanted to cure diabetes, and
then she had a period, and then she put in

(44:39):
other chronic conditions. So she was looking out for me first,
but she was thinking about other people too, So they
are very attuned to this. And you know, when when
we started this work, I can remember as a newly
diagnosed diabetic going to the local chapter of the American
Diabetes Association and stuffing envelopes for a mailer for a

(45:02):
walk or for a gala or something to raise money
for a cure. And so here we are forty years later,
and I'm blessed to be on the eighty A board
and all along up until about twelve years ago, I
was really trying to find a cure for myself and
selfishly and now to the point where we're really focused
on trying to trying to do everything we can still

(45:23):
focus on a cure, but it's really for them so
that if Heaven forbid, they're every diagnosed, we can flip
them to a cure really quickly. And I think we're
getting closer and closer. But it's amazing how tune they
are to sort of the life we have to lead
and how supportive they've been. Just like those kids that
welcomed me back into my kindergarten class.

Speaker 1 (45:43):
Wow, that really says it all. I'm so touched by that.
That must have I don't know how that made you
feel as parents, but my goodness be if you needed
a little boost that you're doing a good job with
parents that'll do it right.

Speaker 3 (45:59):
You need that booth as you question every day as
a parent, Am I am I doing right? Am I
helping them be everything they can? Uh? It's a fine
line between breaking their spirit, not wanting to do that,
but also wanting to keep them in line.

Speaker 2 (46:17):
Well, and you know that's in our support group, that's
who we probably and Also when we make appearances at
walks and galas and go to galas, the groups that
probably come up to us the most are the newly
diagnosed parents and they're just really scared and they're they're
up all night because they care so much and they
want they don't want their kids to go too high

(46:38):
or too low at night, and they're learning about all
these new technological tools they're all they're also trying to
manage their other children who aren't diagnosed at least yet.
They're working, they're doing all the things that anybody would do,
but but they have this new thing and so with
life and death, that's life and death that they're having
to manage. And so that's that's part of our passion

(46:59):
and keeping support group going, is to reach those newly
diagnosed parents and families because they're the ones that I
think are probably struggling the most.

Speaker 1 (47:09):
Yeah, yeah, absolutely. It strikes me that you mentioned there.
You know, you're selfishly in search of your own cure,
and I think we're all here based on our own experience.
So I don't think that's a negative thing, because it's
the stuff that changes us, that drives us forward. In
my experience to want to help or share a message
to others. But this was you from a very young

(47:31):
age and it's continued throughout a very busy, very successful career,
you know, raising children, founding the support group, and being
on these boards like that's that's a lot a lot
what motivates you or has motivated you since a young
age to keep wanting to help, to keep getting this
message out there and sharing your own experience with a

(47:55):
view to helping others.

Speaker 2 (47:58):
There has to be some reason or that I was
diagnosed with diabetes, or there has to be some way
that I can turn it into a signal or a
way to make it into a positive. And I can't
help but know a lot about diabetes management because I

(48:18):
have to deal with it every day, and so to
some degree, it would be selfish if I didn't share
what I've learned, as long as I give the caveat
that I don't have all the answers and that I'm
not perfect myself. Just being able to practically share what
I've learned in forty one years, I feel like is
not only something that gives me satisfaction, but it's almost

(48:43):
a duty. And I've said a lot of times that
my service on the eight board is a privilege, but
it's also really a duty and it.

Speaker 3 (48:50):
Really gives us hope. Roads, Like I think one of
the reasons we are so positive. I mean, this disease
is awful, Like you have to say, it's awful, relentless,
it's difficult, it's as we said, it's life and death.
We're not we don't want to cherrycode it because it's
not something that we want Roads, our children or anyone

(49:10):
to have to live with. But the positive attitudes that
we have, we think is because of all this work
that he and I have done, because it gives us hope.
Because by by volunteering and organizations that are are collecting
money donations from companies and individuals and families who aren't

(49:32):
affected by this disease, and you see the amount of
generosity that goes into funding research and clinical trials and
these hopes for a cure. I mean, that's that's what
gives us hope. That's what gives us motivation to press forward,
to keep Roads healthy for as long as possible, to
work for a cure, and to volunteer a time because

(49:52):
we you've got to say, you have to say positive,
you have to be hopeful, or it really could overwhelm you.

Speaker 2 (49:59):
Yeah, that's that's right, right. I mean, I feel like, sure,
it'd be great not to have diabetes. We would be
active in another in another way, on working on something
else in our community. That would be terrific. But since
we are stuck with diabetes, that's what we know the
most about, and I feel like that's where we can
have the most impact. And to Lana's point, if you

(50:23):
just think about how crazy our world is and how
there are a lot of bad people out there, if
you want an experience that you can feel good about
yourself and good about the world, go to a breakthrough
type type one diabetes gala and see the people who
are doing the best they can to raise the children
who have it, and how generous they are in the

(50:45):
same boat, rowing it in the same direction, trying to
chase this elusive cure. And you think, gosh, if this
could just be a microcosm of the world, we would
all treat our neighbors differently, we'd all be better people,
we wouldn't have so much political unrest. So going to
something like that, or or a diabetes camp or diabetes

(51:05):
walk or ride, the people are there supportive, and they've
got banners that have their children's names on them, and
people are being so supportive. That gives us hope, but
also makes us feel a lot better about the world.
And it's a place where we feel like we actually
have the knowledge to contribute, whereas I think there's plenty
of things that we could get involved in where we
wouldn't know up from down.

Speaker 3 (51:25):
Well, I'll just say one last thing is we have
the pleasure of going to a diabetes technology conference recently
and that's where we met you. And you know, you
hear a lot of negative things, maybe about big pharma
or corporations that are industry industry, but then you go
to one of these conferences and you see the brilliance

(51:47):
and the dedication of the people that are working for
not just the cure, but for the technology that makes
our lives better, and that are developing the new cgms
and the new insulin and the new products and everything
from the stickers that help keep the cgms on and
the amount of work ethic and smarts that are going

(52:09):
into developing all these products for diabetics, and it just
makes you feel so good. It makes you feel good
about the industry that they are making improve making constant
improvements to make our lives better.

Speaker 2 (52:21):
I think that's right, And Jena, I think if you
see all these people who've dedicated their lives to move
the ball on a cure, on a better technology, on
a better protocol for care. We know so many certified
diabetes educators and nutritionists who have helped people like me.
You almost owe it to them to be involved in

(52:44):
the community and help their effort because we've benefited so
much from what they've done on both the technological space
and the human interest space.

Speaker 1 (52:54):
Yeah, it's a beautiful thing to hit what you're doing.
And credit to you guys for being part of that message.
And we do need hope when the alarms are screaming
and we're wishing we weren't going through this for ourselves,
for our children, for whoever. And to echo your experience,
mine's been exactly the same. I do the stuff with

(53:17):
the community, and then I do have touch points with
the companies, and I've been so heartened that people who
don't live with type one and who do you said it,
dedicate their lives to making our lives better. And there
is heart in that. Yes, there's science and there's technology,
but it comes from humans and that to me says everything.

(53:43):
And further to your point about the wet that you're doing,
and we touched on it with the book, you're not
only helping people affected by this condition, but I think
getting these messages out there and normalizing what people with
type one diabetes go through bridges that gap between what
you know it is and what other people think.

Speaker 3 (54:02):
Is m.

Speaker 2 (54:05):
Very well put. I think there's two there's two nuances
to that. One is, if you're not in the middle
of managing type one or in a family that is,
it's hard for you to know what they're going through.
So we're going to expose that, and we have exposed
that in the children's book series. The other thing that
most people don't know is the difference between type one
and type two diabetes, and that's clearly exploited in the

(54:26):
book because of the character has type one. But we're
what we're very excited about is the first three books.
Necessarily there's a lot of character development. You need to
people need to know who Roads is and what makes
him tick. People need to know how great Alana is
and what makes her tick. Books four through whatever are

(54:47):
going to be a lot less about character development and
more about adventures, and so diabetes will become less and less.
You'll still see roads we're in a pump. You'll still
see Alana making sure that he's going to be okay
and get through the at the adventure du jour, But
it's going to be less and less a part of
the book because it can be it can be in

(55:08):
your life as a young person.

Speaker 3 (55:09):
Yeah, we wanted to tackle something that was very important
to us in each one of the books that we
could feel like we were educating the population, as you're saying,
giving them a little tidbit. So again, in the first book,
in school Bus Secret of the Adventures of Rhodes and Alana,
Rhodes talks about the fact that he is type one
and this conversation and what it means to prick his

(55:30):
finger and check his blood sugar and then give himself
insulin so very basic. In the second book, we felt
it would have made such a difference on Rhodes's life
if he had had the ability to be screened and
they had known that type one diabetes was coming. And
the fact that we have this technology now and it's

(55:51):
available to everyone, whether or not you have type one
diabetes in your family, you know if you have a
one in fifteen odds or greater because you have someone
in your immediate or extended family with type one diabetes,
and you could know whether you have the auto antibodies

(56:11):
and track it before it's coming and perhaps even take
therapies to slow its progression. Wouldn't you want to know?
But people don't know about it, So we built that
into the second story, where Rhodes in his eight year
old voice, tells his buddy that they're don't you know,
you know, how did Why didn't your parents know? And

(56:32):
so he talks about the symptoms and he's like, you
don't know. You can't see the attack that's going on
in your body. My fighter cells were beating up my
pancreas cells and we couldn't tell that was happening. And
his friend's horrified, and he said, you know, I got
screened for my food allergies, and that's how we found
out I was allergic to peanuts. It sounds like your

(56:53):
screening was the same thing. And he said, exactly, it's
like relatable that you could go get your blood tested
and you could find doubt whether that internal battle attack
is happening, so we love that component. And then in
the third book, Rhads goes on a CGM and so
he gets to talk about going on a school field
trip without his parents because he is independent. I mean,

(57:15):
his mom is still watching on the app from home
and tracking his blood sugar and his insulin dosages. So
there's a there's an illustration of that. But Roods is
like feels like a superhero. He feels like a bionic
man because he can.

Speaker 2 (57:28):
Talking to a GMM.

Speaker 3 (57:29):
And so we explained the technology. So as Rhad said,
we like wanted to develop those key touch points in
the first three books and then from here we'll see
where it goes, what kind of fun adventures they can
they can do.

Speaker 2 (57:41):
And we really wanted to show also that you know,
for children who don't have access to a CGM, that
in books one, in books two he could manage his
diabetes by sticking his finger. And then he transsitions in
book three into that latest and greatest technology and he talks.

Speaker 3 (57:56):
About the shots he took before he went on a pump.
So we're we are to expose families and people who
don't know about diabetes all the different ways that you managed,
you can manage diabetes.

Speaker 2 (58:09):
And you know, we're also very hopeful that as new
technology comes out, we can introduce that to the characters,
things that we don't know about and can't even fathom.
And of course we expect there to be a book
in the next three to four years where Roads is
cured and goes to the hospital or wherever you're going
to go to get your infusion or whatever you're going
to get, but that the series can continue after he's cured.

Speaker 1 (58:33):
Yeah, so much in that this is so well thought through, Like, wow,
hats off to you guys for this.

Speaker 3 (58:41):
It's been decades. We've been planning this for days.

Speaker 1 (58:45):
It's interesting you say about making sure people know about
fingerprecking and things, because it's so easy to think online
that everyone is hooked up to incident pumps, et cetera.
But most people are on md I through choice or
otherwise through no choice. And my insolent pump completely broke
when I was on a plane quite recently. It was

(59:06):
a few years ago now actually, but everything shut down,
like do not resuscitate, completely gone. Because I was on
a plane, I had absolutely everything I could possibly need
with me, the backup injections, the backup fingerpricker, etc. And
I was just like talking to myself on this flight
because obviously there was a moment of panic. And then

(59:26):
I was like, Jen, you did it like this for
eighteen years. You're gonna be fine. And actually, at that
point I was very grateful that I had that frame
of reference. I'm not saying that we would ever go back,
but the way I have to kind of shift my
perspective around these things that happened. But it's a really
good point that you put that out there. I want

(59:49):
to come back to screening because I know that your
advocates are screening and this is a new world if
you like talking about things that we can't even fathom,
and what you've witnessed in your diabetes lifetime is phenomenal
and sort of nodding to the fact that there's so
much more to come. The trajectory you're on now that

(01:00:10):
again is so hopeful. It's true, but for people who
don't know, you can now take a test for the
auto antibodies that are the marker of type one. And
I know your advocates for screening, and you even had
your children screened as well, and that's how our passed
across because I'm doing some work in that world. So
I'd love for you to touch on how you found

(01:00:32):
out about it, the decision to put it in the book,
but also the decision to screen your children as well.

Speaker 3 (01:00:38):
Yeah, thank you. So going back to our volunteer work,
it was actually due to the fact that I was
involved in formerly jd Orf on a board now Breakthrough
te D and they start every meeting with a mission
moment where a scientist comes and they tell you a
little bit about what's the ladies and greatest and so

(01:01:00):
I feel like I had an inside track when the
children were two and four, So seven years ago, did
I do that math right to screening because it wasn't
being widely talked about then. And I heard about this
and I approached Rhodes with this information, and it is
an interesting conversation to have with a diabetic parent because

(01:01:26):
my perspective was, Wow, we can get this information, we
could know in advance of a clinical diagnosis. Wouldn't it
be great? This is a no brainer. And Rhodes ultimately
got there. But I think I did not factor in
that human emotional component of the potential for guilt of well,

(01:01:51):
but if we find out he does have the auto antibodies?
Is that because of me? And so then it sent
us down that rap. The whole of researching the statistics
and trying to get you know, what are the odds
and then understanding that because as a having a Type

(01:02:13):
one parent puts you in the category of one in fifteen,
but then if you have a father with type one
and a father who was diagnosed before the age of ten,
then that doubles, so then you're looking at one in seven,
one and eight. So that doing our research, getting that information,

(01:02:33):
having the heart to heart conversations got us to the
place of having the information like how grateful would you
have been had your family had some time to prepare,
to educate yourselves, to get a handle on the management,
to talk with, find a good undercrinologist. You didn't have

(01:02:53):
one in your small town. You had amazing people, but
you did not have a big hospital system. You had
to find a drochronologists and drive to it. So having
that time to.

Speaker 2 (01:03:05):
Build out your team ultimately need to rely on Yeah,
there's a lot of practical reasons that ultimately swayed me.
Of course, the logical, the easiest, the most low hanging
fruit is if you know ahead of time, it can
really help you not develop DKA as you're transitioning from
the first from stage one, first stage to second stage

(01:03:28):
and then third stage, of course is full blown type
one diabetes. As you're making that transition from two to
stage two to stage three, you can catch it in
time so that you don't go through DKA. And of
course that the studies now show that in addition to
the damage that can do to your body, it's also
easier to manage. Not easier, that's a terrible way to
put it. It's less difficult to manage and keep your

(01:03:49):
blood sugar and range. If you haven't gone through DKA
in your life, then if you did spend time in DKA, well.

Speaker 3 (01:03:56):
I'll say, we're not doctors, but we have spoken with doctors,
and so we made a point of doing some research,
but then also communicating asking the questions of his under chronologists,
seeking out pediatric under chronologists, having the conversations with scientists
who are developing treatments, and trying to get as much

(01:04:17):
information as we could. And that's how we garnered these information.
We actually read a study, a pediatric study that was
done of children who had been diagnosed in DKA and
you look over their lifetime and it just becomes they
had more highs and lows. The study concluded that it
was more difficult for them to keep their blood sugar

(01:04:39):
in range. They were less likely to have blood sugar
in range over the course of their lifetime. So I
grasped at those little things because he's very analytical, so
I was able to present hey, read this study, Hey
have this conversation, asked these questions. It gave us this
information that made us very confident in the decision.

Speaker 2 (01:04:56):
Yeah, and I think also to Lana's point, it helps
you get ready if if that day ultimately comes. And
then of course now with with products on the market
that can delay the onset. Uh, And you think, right now,
the studies are very promising and showing a two to
three two two three year delay maybe more. And if

(01:05:18):
you put that in perspective, if you can if if
someone is does the testing and shows they're predisposed and
that they're a candidate for the therapy and decides to
pursue it, that's a lot of ifs. But if that
if you're ever there and you think about what three
years can mean to someone's life, that's middle school. And
if if a kid can go seventh, sixth, seventh, and

(01:05:41):
eighth grade without developing type one diabetes or or put
it off to after puberty, that can be a game changer.
And and since we're pretty adamant that within the next
five years and for real this time, within the next
five years, within a certain amount of time, there's going
to be either a biological or technological cure for type

(01:06:04):
one diabetes. The longer that you put off the onset,
the closer you get to when we ultimately have that
biological technological cure.

Speaker 3 (01:06:13):
So so and Jen, I just want to say, so
we did finish that close.

Speaker 2 (01:06:16):
That loot.

Speaker 3 (01:06:17):
We checked when our kids were really little, and at
the time there was a product. This is in the US.
I don't know if it's available across internationally, but we
were able to order a product that came to our
house and there was an at home fingerstick test, and
so it came to our home and we were pricking

(01:06:37):
their We pricked their fingers and we just put dried
blood drops in little circles and it was a folded
up postcard and we shipped it away and then you
get the results. We also participated we know, continued talking
with doctors and just because you get negative auto antibodies
at one age, we decided that we wanted to re screen.

(01:06:58):
It sounded like because we screened, so yeah, we had
negative auto antibodies, it would make sense to continue rescreening them.
So we actually were able to enroll them in the US.
We have a trial net study, which is a research
of program, and so we were able to enroll them
as the children of a type one and so they
were able to go in annually and have just a

(01:07:18):
blood draw for the auto antibodies. So they would go
in and have a blood draw and we bake it
a day of it, so when the kids go in
to have their blood drawn, they get a lollipop and
they have enthusiasm and they understand the importance of it.
And we want them to be understand what they're doing
and to be part of the decision now that they're

(01:07:40):
a little older, but it's something that they have wanted
to do. They have wanted to screen, they've wanted to
have the information so that they can prepare for it.
And so there are lots of avenues and now you
can just go to your physician. You could go to
your GP or your pediatrician and say I'd like to
be screened. I have an autoimmune can in my family,

(01:08:01):
whether it's type one or not, or I am aware
of this and it's something I want to be screened for.
And your doctor can order like they would check your cholesterol,
they can order a blood panel and get the results
of an anybody screening. So there are so many more
ways to do it, even today, seven years later, that
if you have the desire to do it, you can

(01:08:23):
get the information and then take it from there.

Speaker 1 (01:08:29):
Yeah, thank you for laying that out, because this is
a new world and I don't think that many people
know about it. And thank you as well for articulating
the many sides of it, because information is incredible, but
it can be confronting, and you touched on it there.
I sort of liken it too, Like I was a

(01:08:54):
hard no on anything to do with incident pumps for
a very long time. And now that we wear sensors,
glucose sensors, certainly in the UK as kind of a standard,
I think that builds a bridge sometimes to the idea
of having something technological on your body. But at first
I was like, I don't I don't want that on me,

(01:09:16):
but what it gives me and the information and the
decisions I'm able to make from that sensor is incredible.
But it's not always clear cut, right as you kind
of illustrated there.

Speaker 2 (01:09:29):
Everybody has to come to it on their own terms,
with their own lived experience. Like you, I didn't put
maybe for some of the same reasons. I didn't want
to wear an insulin pump for a long time, and
part of it, I'm sure was vanity, but part of
it was I felt like I was doing well enough
with shots and fingersticks. And I also do think that
part of it was a technology. Technology really hadn't come

(01:09:51):
along enough to feel like you could fully rely on
your twenty years ago. But this was in two things.
So I didn't go on a pump until after college.
I was less concerned about having something on me after
college and when I was in the workforce, and it
was still ten years until cgms were worth wearing. And
then I added that ultimately too, but everybody has to

(01:10:14):
come to the decision of what to do with their
care at the right time based on their lived experience.
Screening is not for everybody, But we ultimately concluded after
some real discernment that it was right for our family.

Speaker 1 (01:10:26):
Yeah, it's exciting to me that we have these opportunities,
like you say, for children and adults not to go
into DKA and these very traumatic entry points into a
world of type one that, until the point you need
to know about it, a lot of people don't know
anything about it. You know, why would you in a

(01:10:47):
lot of cases. Yeah, incredible that it's written into the
books as well, like part of history now, you know,
with roads and a ladder. So we've sort of alluded
to what's next for them, But I just want to
ask briefly, like, what's the response been like as you've
built out this world, as they're going on their adventures,
what kind of conversations have you had with people who

(01:11:07):
are touched by type one and otherwise you.

Speaker 2 (01:11:10):
Know it's been The response, of course, has been very heartwarming,
and it's interesting how sort of the tears of audience
have sort of presented themselves. We always wanted the book
to be an adventure series, not a book about diabetes,
not a book about a diabetes character, but an adventure
series where a character happens to have diabetes or chronic condition.

(01:11:31):
And so at first there were a lot of folks
that even close family and friends, who thought, well, the
book wasn't for them, because this was a book about diabetes.

Speaker 3 (01:11:41):
It's so nice that you did that for your community,
for your children, for those people in your circles.

Speaker 2 (01:11:49):
Good for you, Good for you. But once it got
in their hands, or better yet, in their children's hands,
and they realized it was an adventure series that could
entertain while also maybe teaching you something that you know
you were learning, the audience and the interest has really
really bloomed, really blossomed once people get by the idea
that it's not a book about diabetes or about a

(01:12:12):
diabetetic character. And like I said, after now that we've
done so much character developments in books one through three,
the next few books will be even more straight adventure series.
But it has been so it's been heartwarming to sort
of see over the time that our primary audience, no doubt,
is a diabetes community, and it was well received by them.

(01:12:32):
But then there was a second trunch of people who
didn't know anything about diabetes but had heard about the
book or knew us or saw us on social and
bought it. And then the third trunch was much older people,
like I said, most of whom had been affected by
type two, who didn't really know how to talk to
their grandkids. In this climate of iPads and disinterest in

(01:12:54):
all things and distraction, they were able to use the
book as a tool to teach their grandkids about thebes.

Speaker 3 (01:13:00):
You can get our book as an ebook for Kindle.
That's true, so if your kids only read their books
on the computer. One thing I'll say, jen is that
I had a lot of conversations with parents on the
screening front, and they were very set in their decision.
There are some parents that say, you know, I just

(01:13:24):
don't want to know because I don't want to worry,
and I didn't want to persuade them. I just presented
our situation and why it made sense for us. But
what's been incredible is giving the book to the family
and then hearing that the children actually will say, Mama,
I didn't know that we could do that. We got

(01:13:46):
to test my little brother. He doesn't want to go
to the hospital. I hated being there and getting poked
for the first time. We could teach him how to
poke his finger at home. Holy cow. When that hits
you as a parent and you hear it from that
literally the mouths of babes of wow, we could spare
my sibling, my cousins, my friends at school from the

(01:14:10):
trauma of that sort of dramatic diagnosis to giving them
this information and that the kids are the ones that
are telling their parents, so let's find out. Oh that
it like sends shivers all over.

Speaker 2 (01:14:23):
Minduse you're always the best advocates, but then it's.

Speaker 3 (01:14:26):
Like they're doing the work for us.

Speaker 1 (01:14:30):
Incredible, wow, very powerful as well. This has been such
a hopeful conversation. I think hope is the word. You know,
there is a lot that we go through and deal with,
but you guys at testament to what is possible and
what can be put out there in the world to
make this more positive and more hopeful. Please please tell

(01:14:52):
everyone where we can find you and where people can
get hold of the books as well.

Speaker 3 (01:14:56):
Thank you so much. Well, you can visit Rhodesanalana dot
com and that's the web address for our books and
they will send you to links you can buy if
you if you purchase books on Amazon or I know
Amazon ships internationally in the US. Barnsandnoble dot com head

(01:15:16):
carries the books so international, internationally, global online book retailers
all have access to the Adventures of Roads and Alana,
so you can just search for that title against School
Bus Secret and Bully Blues. The first two books are
out and Zoo Goes Wild book three we're expecting to
launch early May, so in a matter of very soon.

Speaker 2 (01:15:40):
And you can you can follow us on social media too.
If you just look at look for Roads and Alana,
you'll find us on all the social media channel.

Speaker 3 (01:15:46):
That's right on Instagram and Facebook, and you can follow
Roads and Alana there as well, and it'll take you
to our support group page, which is Thediabetes Support Group
dot org, where we have posted videos of us sharing information,
tips and tricks from living with someone with diabetes or

(01:16:07):
living with diabetes for forty years, and so you can
watch our videos where we hopefully are encouraging and teaching
some of the things we've learned.

Speaker 2 (01:16:15):
Yeah, we're very proud of our support group. We, like
Alana said, we're not doctors, but we have a lot
of practical experience and we focus on the positive and
proactive management. And the content is one and two minute
videos about diabetes management from my perspective as a diabetic
from Alana's perspective as a support person. Those videos get
posted on social and on the website and then become

(01:16:37):
part of our library, and so a lot of times
when we meet newly diagnosed families, we send them to
our website and our library, where you can search on
a topic and find a one or two minute video
about it, and if you can't, you can you can
tag us and we can make a video about it.
So and most of the sharing happens on that site
and also through our social media channels to make it
a fully functioning on online diabetes community.

Speaker 1 (01:17:02):
Amazing, And I'll add all that information in the episode description.
I've got my.

Speaker 3 (01:17:10):
Love it there we are.

Speaker 1 (01:17:13):
I can just imagine as well. We didn't touch on
your career because we've covered so much ground, but it
sounds like you're having a lot of fun becoming book characters.

Speaker 3 (01:17:22):
Oh my god, Straws, who was you know when we
said we were we were both practicing lawyers, and we said,
we really want to get these books done. This is
something that we we want to see happen before our
children get too old. And we sort of looked at
each other and we didn't have to draw Straws, I said,
I'll do it. I'll do it. I'd love to do this.

(01:17:43):
I was a transactional lawyer. I wrote contracts, so writing
was in my bones, and so I said, I can
translate this into producing children's books. So it's been really
really fun.

Speaker 2 (01:17:56):
It's it's you know, it's It's been a lot of
hard work, credit a lot of running through a lot
of brick walls, running up up a lot of steep
hills to get us through. But what we've learned in
producing the first two books really helped us, we think,
in bringing a good third product to market, and we're
excited to see where we go from here. Yeah.

Speaker 1 (01:18:15):
I'm excited to see where these adventures take you. And
I can't wait to be wearing my Alana T shirt
as well.

Speaker 2 (01:18:21):
It's going to be fantastic.

Speaker 1 (01:18:23):
Maybe I'll get a roads one. Why not?

Speaker 2 (01:18:25):
I love it, A.

Speaker 3 (01:18:26):
Plushy like a stuffed Alana Dahl.

Speaker 1 (01:18:28):
Maybe there you go. I love it. I love the
way you're doing, I love the message you're spreading. Thank
you so much for talking to me today. I really
appreciate it.

Speaker 2 (01:18:37):
Thank you so much for having us Jim, we really
appreciate it. And thanks for all you're doing to spread
the good word in the diabetes community and beyond.

Speaker 1 (01:18:43):
Thank you appreciate I hope you enjoyed this episode of
Type one on one. Please remember that nothing you hear
on this podcast should be taken as medical advice. I'm
definitely not a healthcare professional. If you like what you hear,
hit subscribe and do leave a little review on iTunes
if you have time. It really helps to spread the

(01:19:05):
word about type one diabetes. And thank you so much
for listening.

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