Episode Transcript
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Gary (00:18):
Welcome to Think Like a Pancreas,
the podcast where our goal is to keep
you informed, inspired, and a littleentertained on all things diabetes.
The information contained in thisprogram is based on the experience
and opinions of the IntegratedDiabetes Services clinical team.
Please discuss any changes to yourtreatment plan with your personal
(00:38):
healthcare provider before implementing.
Welcome to Think Like aPancreas, the podcast.
I'm your host, Gary Scheiner.
I am owner and clinical director ofIntegrated Diabetes Services, and today's
session is a celebration of Dads withdiabetes and dads of kids with diabetes,
(00:58):
and I'm very excited to be joined by anold friend and colleague, Tom Karlya.
Tom is Vice President of theDiabetes Research Institute.
He's a former producer forD-Life and a longtime volunteer
with Children With Diabetes.
But most importantly,he is a diabetes dad.
His kids, Kaitlyn and Rob,both have type one diabetes.
(01:22):
So, Tom, I only hit the highlights.
Why don't you tell us a littlebit more about yourself?
Tom Karlya (01:26):
First of all,
thank you for having me.
Seeing you and Barb out there.
It, it's like a, uh, the dream teamof people who I've met over the years
just because of your vast experienceand the amount of different ways you
look to constantly trying to helpall of us in the diabetes community.
So I am very grateful, grateful,and honored to be here.
I don't know what else you need to know.
(01:48):
I guess we'll go throughit in our conversation.
It'll come out.
And what's the year?
All the things I've been involved with.
I just, my kids.
I started out this world to be an actor.
That's all I ever wanted to do.
I was working in New York City on a show.
On September 26th, 1992,when my wife beeped me.
Gary (02:04):
Let's just cut it off there.
Your wife beat you?
Tom Karlya (02:07):
Beep, beep.
Gary (02:08):
There is
Tom Karlya (02:08):
beep.
Gary (02:09):
More to it.
Tom Karlya (02:10):
Beep beep.
Gary (02:10):
Beeped beep.
Beeped you.
Gotcha.
Tom Karlya (02:14):
Um, and, and had
a nine one one to call home.
Pulled to the side to a phone booth.
Those of you who don't know what abeeper is, probably doesn't know what
a phone booth is, so I'll explain.
I called in and she said,Tom, you gotta get home.
We're rushing Kaitlyn to the hospital.
They think she has type one diabetes.
Talk more about that in a littlewhile, but that changed my life.
(02:36):
When I got to the hospital where Ilived on Long, long Island at the time.
I lived, uh, three quartersof the way to the Hamptons.
I lived in a place called Medfordand, uh, don't live there now.
We moved to South Carolina about 10 yearsago and, uh, we, we were entrenched in
the, in the, uh, long Island community.
And at the time we didn't know whatthis--whoever knows what diabetes is.
(02:58):
So we found out.
We just threw ourselves,immersed ourselves in as much
education as we could find out.
I made a promise to my daughter that wewould do everything that we could to find
a cure for this disease and to find waysto help people who have to live with it.
And she was two at the time, soI'm sure I was talking to myself.
(03:18):
But it changed our lives.
Uh, I became an advocate.
My first job in the diabetes worldwas for an organization called JDF.
Now, of course, has got, uh, gone througha couple of different name changes,
Gary (03:29):
iterations.
Tom Karlya (03:30):
And, and certainly they,
Gary (03:31):
we won't, we won't even
comment on the newest name.
I don't want to get into theheated discussion about it.
Tom Karlya (03:36):
You know what, for me it's
the same organization with great people.
They, the same great peoplethat have been around.
One of the moms who started that was agirl named Carol Lurie, and I remember
when I left to go to the Diabetes ResearchInstitute and I thought she was, you
know, she was gonna really laced intome when I left, but she, she didn't.
And, and a couple of weeks after Ileft, I got a, a, a piece of mail.
(03:59):
And it was from her and had, she hadher own calligraphy and I opened it up
and she just said, always gets to me.
She said, I'll see you at the finish line.
She said, I'll see you at the finish line.
And so wherever I've worked, and youknow, I always said, it should never be
this organization or that organization.
It should be this organization and thatorganization and that organization.
(04:20):
And look, resources are limited.
Everybody can't give, you know,to everybody all the time.
But I know that when I found the DiabetesResearch Institute, which was really
the only full center of its kind.
I mean, it's an 87,000square foot building.
That's all they do is lookfor the cure for this.
And they have a clinic also.
I knew I had found my home and where Iwould spend probably right up until this
(04:40):
day and still working there just becauseof, of of their belief of that a cure
can be found and if they can't move itup the research ladder, they move it out.
Gary (04:49):
Sure.
Who, who better to be there than theman whose moniker is diabetes Dad?
How did that name come about?
Tom Karlya (04:57):
Actually,
that happened at D-life.
It was a combination of two people.
I, you know what, I had this thought theother day, the late Paula Ford Martin,
the world lost her, we lost, uh, an icon.
She died in very young age of cancerand, and actually Kerry Sparling,
the, I had to answer to Kerry.
Kerry was the, the editor.
And, um, she said, look,we're gonna make diabetes Dad.
You're gonna, you're gonna do ablog for D Life called Diabetes Dad.
(05:19):
And when I left there, then Istarted writing, I started a column
and I started diabetes dad.org.
I remember going to, um, GoDaddy and uhpunching in diabetesdad.org and saying,
I'm sure that's taken and it wasn't.
And I was like, whoa.
So I, um, grabbed that and, and havebeen writing monthly columns since.
It's been a, it's been a joy andwhen I did, when I was at D Life, you
(05:44):
know, when you, you're a televisionstation, everybody wants to talk to
you, so, so when you're in fundraisingand trying to raise money, not
everybody wants to talk to you.
Gary (05:55):
Yeah.
Why... i, I'm surprised Carrie didn'tinsist that you wear a plaid everywhere
and drive a station wagon just tofulfill the diabetes Dad moniker.
Tom Karlya (06:04):
Who, who, who?
I, I never said she didn't say that.
Gary (06:08):
That, that would've looked great.
I could see.
See you doing that.
Tom Karlya (06:11):
It was, it was, uh,
it was that name and I, I, I,
I correct people all the time.
It's a diabetes dad, not the diabetesdad 'cause we're all out there and
some who are parents have kids with it.
And those who are parentswho live with type one.
As you well know, my mantrareally is just don't do nothing.
Just even in your own littleworld, in your own little space,
(06:32):
people say, what can I do?
Well, not everybody is, you know,got a globs and globs of money that
they can just give it out to people.
And not everybody has super amount ofbrains that can research to find a cure.
In your hometown, in your little world,whatever it is, you can make an impact
in your community about this disease.
Gary (06:52):
So we're, we're gonna spend
some time talking about being a
dad to children with diabetes,and then we'll talk a little bit
about being a dad who has diabetes.
That'll kind of be my role.
Why do you feel that?
Dads deserve their own specialtopic and their own special,
special podcast dedicated to this.
Tom Karlya (07:12):
Well, I think to be, to
be quite frank with you, it's why do
we get our own holiday Mother's Day?
There's Father's Day.
There's, because I think there aresituations, there are instances,
there are everyday experiencesthat are unique to us as dads.
How just in regular life, dads and momsare two different, are two different
(07:32):
beings, and I think it's extremelyimportant that they're very well
connected and that and that the kids know.
And in today's world, it's even tougher.
And talking to dads on their level, on alevel that, I know what it's like to be
a dad and have to put up with things thatare different than when they want mom.
(07:52):
It's a different, I think we're,we're, I'm not saying that we're not
emotional, but you know, there, youknow, you think of a mom, you just
think of somebody with open arms to hugand kiss your boo boo kind of thing.
You know, and I think dads are, arenot rough about it, but they're lean.
People seem to think that theycan lean on their dads and they
go to their mom's for emotional.
(08:12):
Now I'm not.
Getting into, you know, whereare we in today's world?
And moms and dads are interchangeablein a lot of different ways.
And that's not my discussion point today.
My discussion point is, is that, and alot of times today, the role of the mom
and or the dad has to take on two rolesbecause there are divided families.
Now there are melted families together.
I was at a conference, this just blew mymind and I dunno if you remember this,
(08:35):
but we were at a conference and, andthere was a guy there and he said, I am.
I'm divorced.
I'm divorced, and I'm herebecause I'm still the dad to my
children with Type one diabetes.
He said, that doesn't changejust because I'm divorced.
And then the next guy spoke too,'cause this was just the dad's group.
And the guy said, I married into afamily with a child with diabetes.
(08:56):
I said, wait, wait, wait,wait, wait, wait, wait.
Are you?
Is the same?
Are you both the parent andthe stepdad to the same child?
And he said, yes.
I just burst out crying because somany times when two families come
together, it's a real struggle.
It's a real struggle when whendiabetes started, diabetes is used
as another wedge and a lot of timesfor the conflicting of the parents.
(09:19):
But these parents, and I'm sure there'sstill things that they have to go
through, but they thought it mostimportant and both of them had their
wives with them, that the child, ifeverybody could just focus on the child
with diabetes, we're all gonna win.
Everyone's gonna win.
Gary (09:34):
Does it bother you that in so
many families, whether it's a nuclear
family, a divorced family, the dadoften plays a relatively minor role
in the child's diabetes care and themother seems to adopt or just take on
so much of the responsibility herself?
Tom Karlya (09:53):
I think it's communication.
It boils down to communicating boththe needs of the parents and the kids.
For example, when Kaitlyn got diagnosed,one of us had to quit their job.
One of us had to quit andone person had to stay home.
She was two years old in our lives.
The only way we were going tomake this work was for one of us
to stay home, and a lot of peoplesay, oh, so your wife stayed home?
(10:13):
I said, wait a minute.
We discussed that.
I didn't walk into this and said, okay,you'll stay home and I'll go to work.
We had a give and take, notjust about the the end game.
What are you feeling?
The fact that my, my wife was, Imean, she was an executive assistant
to New York State Senator andshe's, she was hot stuff when she
worked, so she, she's hot stuff now.
I don't wanna get in trouble, so she,
(10:36):
she was really good at whatshe did was my, is my point.
She was really good at what shedid, so I didn't want to just assume
that that's the way this would work.
I wanted to know not only how wewould do it, I mean that what we would
do, how we would do it, what's yourfeeling, and then it's important for
both parents to constantly check inagain, this is the communication.
I would come home from work.
(10:56):
When I was working two jobs.
I was working for whateverdiabetes organization.
I was going to do the showat night in New York City.
I'd get home at one or two in the morningand I'd come home and my wife would be
on our bed and she would be sleepingwith all informational systems, all uh,
pamphlets and magazines that she hadfallen asleep reading about diabetes.
So, we both immersed ourselves intothis, but at the same time, and I don't,
(11:21):
I am not an easy person to live with.
Don't get me wrong, she's a saint.
But the bottom line is, if you talkabout it, the father doesn't have
to take the off to the, to the role.
However, how much he does, is how much heallows himself to do and help his wife.
I, it, it, it was not so weirdto me to say, stay asleep.
(11:41):
I'll take care of breakfast today, or, or.
You know, even though my time homewas very limited, any spare time
we had, it was all about the kids.
And I think it kept us strong.
Financially?
How we didn't loseeverything is just beyond me.
Anybody who goes through this knows.
Gary (11:55):
The challenge with that
is so many men are not talkers,
they're not communicators.
So when you have a child withdiabetes or any chronic illness,
how do you change that persona?
How do you become someone whocommunicates more and talks more?
Tom Karlya (12:11):
How many men coach baseball
that have never touched the ball before?
They do it because it'simportant to their kid.
It's important to their child.
If you take, if it's important toyour child, you make it important to
you, is my only short answer to that.
There's a lot of things we do.
I mean, I'm not exactly, a petite kindof guy, but yet also when kindergarten I
sat in the same small chair as every otherparent did, I had no desire to do that.
(12:35):
But we do that because it'simportant to our child, and I
think that's what it's about.
Gary (12:40):
I'm sorry, I'm trying to
keep myself from cracking up.
Thinking of you in one ofthose kindergarten chairs.
Tom Karlya (12:45):
It... oh, you go ahead.
Let it out.
Let it laugh.
Gary laugh.
It was very funny.
Gary (12:49):
I just wanna bust out.
Tom Karlya (12:51):
Just what, what, yeah.
And it was, but you know what,but to me that's the answer.
It's, you know, friction andfriction will only get you heat.
So you, you got, you gotta lookat it and say, look, this is here.
I can't make this disease go away.
And you can fight it tooth andnail, or you can do whatever
it takes to make it work.
Whatever.
And that means just that,whatever it takes to make it work.
Gary (13:14):
So how long have Kaitlyn
and Rob had Type one now?
How many years?
Tom Karlya (13:18):
Caitlin was
September 26th, 1992.
And Rob,
Gary (13:21):
You're gonna make me do math.
Tom Karlya (13:22):
What?
Gary (13:22):
But that's 20, 23 years.
There we go.
All right.
Tom Karlya (13:26):
Yeah.
That's 33, that's 33 92.
Gary (13:29):
See, you made me do math.
You see what happens?
Tom Karlya (13:31):
Well, that's because,
well, you should be good at math.
You have to do conversions usually.
Gary (13:35):
I am, but, and,
Tom Karlya (13:37):
and, and Rob
was, was March 20th, 2009.
So he was 13 and he, it'sinteresting 'cause he was diagnosed
four days after my dad died.
Gary (13:47):
Hmm.
Tom Karlya (13:48):
So when I talk to people and
they say, oh, I've had the worst week.
I got a flat tire at the supermarket.
I'm like, oh, they got nothing on you.
I can beat that.
I can beat that.
Gary (13:57):
16 and 33 years.
Have you, have you discovered oruncovered any silver linings to having
children who have type one diabetes?
Tom Karlya (14:06):
No.
I, I think children are justa silver lining in themselves.
Whatever it is, mine havediabetes, somebody else can make
500 feet, uh, baseball, 500 feet.
It's watching them thrive.
I mean, there was this doctor put his armaround me when Kaitlyn was probably six.
I could still see uswalking down the hall.
I could smell the hall.
I can do everything.
He said, listen to me.
(14:27):
You should hope for college.
I, I went, uh, I'm sorry.
He said, you should hope for college.
He said, this is a na.
You don't know how nasty this is in 1995.
This is a nasty disease.
I said, are you saying she's going to die?
He said, no, I'm just saying you have tobe ready for whatever life throws at you.
I said, thank you, doctor.
And I looked, I'm square in the eye.
I. Honest truth.
I said, you're no longer our doctor.
(14:49):
I said, we're through.
Gary (14:49):
Now, before or after
you punched him in the nose.
Tom Karlya (14:52):
Well, believe me, we've
learned, we've learned to curtail
those, but yeah, so I said, you'reno, you're no longer our doctor.
And I remember, you're gonna get meto do this, but she graduated with her
doctorate nurse practitioner headinginto a world of practice by herself.
I looked up to the sky, I said,I hope you're listening 'cause
I got a couple words for you.
Gary (15:11):
That's cool.
Tom Karlya (15:12):
It's just, so
let's take this full circle.
Watching them excel.
I wrote, one of my articleswas Life with an Asterisk.
Every single thing, my son, mydaughter, my friend Gary, so many
others, they do it with an asterisk.
If you understand what that asteriskmeans, it's gonna help a lot of ways.
Gary (15:32):
Do you think having Type one
has benefited your kids in any way?
Tom Karlya (15:36):
Okay, let me, let
me go to my wife for this.
Um, I asked my wife, I said,would you change anything?
She said, you know, of course I don'twant them to live with this disease, but
she's got a lot of outlook like I do.
She said they have becomewho they've become because of
everything they have to deal with.
So she said, I'm not so sure thatif we pull that part of the equation
(15:56):
out that they become who they are.
Now physically, of course shesaid that's the easy part, of
course they'd be better off.
But it's just however, youhave to have a whole different
lifestyle to take care of you.
I, I'm surprised, I think, I thinkGod's got a great sense of humor.
'cause I'm sure he looks at me and says,we're not gonna give him type two and
we're gonna see what he does with it.
'cause you would think a guy by hissize has got type two diabetes, but
(16:18):
I don't, it's just he's like, well wetook two of their kids with type one.
Well probably should hold off with him.
The truth of the matter.
Gary (16:25):
But who would wanna read a, a
blog by someone who just calls himself,
dad, you gotta be diabetes dad.
Right?
Tom Karlya (16:30):
Well, well, it's, well,
and it's an adjective I wear, I wear
proudly and, and, and not because ofme, but because of my kids and being,
being in this, in this world becauseof, of people like, like Gary and so
many others out there who do things withthis asterisk that are just amazing.
And even even parents who dotremendous things where they could
(16:51):
have just turned and walked away.
I mean, I, I, you know, and I just,Gary Hall just was a, is an Olympic
swimmer, was an Olympic swimmer.
He won more medals after he was diagnosedwith Type 1D diabetes than before.
Gary (17:04):
He won no medals
before he was diagnosed.
Tom Karlya (17:06):
No, he did.
He actually did.
It's happened there.
Gary (17:08):
Well, not a gold.
Tom Karlya (17:10):
Yeah, that and that way
Gary (17:11):
there was this Russian
swimmer he could never beat.
Tom Karlya (17:15):
And then when he
got diagnosed, 'cause he thought
his, his career was over.
Now his dad was an Olympian and he, heworked real hard at it and he got, you
know, he ended up with 10 Olympic medals.
Now, fast forward to today, the firesin California ruined Gary's house
and burned every one of his medals.
So they're unrecognizable and hejust-- there's a picture out there,
(17:35):
you can see it, it's online, wherethe Olympic Committee called Gary, I
don't know what country he went to.
They gave all 10 of the medalsback, all 10 of the medals back.
I cried.
I cried.
I cried.
I cried.
Because it's one thing to do thingswith an asterisk, but then you lose
it and then somebody else comes alongand says, we recognize who you are.
(17:56):
And there's a lot of,and it, you know what?
You don't have to be on an Olympic team.
You could be on a little league team, youcould be on a lacrosse team every time.
Gary (18:03):
You can graduate
college, you know, graduate.
I have to tell my patientsthis all the time.
I have to remind them, you know, thethings that you accomplish day in
and day out, you don't see these asaccomplishments, but you've done them
living with a 24 7 chronic, pain inthe ass disease that has no foreseeable
cure and you're still managing toaccomplish everything you do and smile.
(18:26):
So this is not like a baseball asteriskwhere they use steroids and you put an A.
Tom Karlya (18:30):
Correct.
Gary (18:30):
This is, this is a good asterisk.
This means you did it despitesome challenges that other people
just don't have to deal with.
Tom Karlya (18:38):
Not only they have to,
they have no idea what they are.
They have no idea.
I'll never forget what we have now.
I have a lot of, I got, mymother had, she had a, a
twenty--twenty-three grandchildrenand I think 34 great grandchildren.
I mean, when we had family functions, butwe would, I'll never forget that-- we were
at functions at my mom's house, a party,and Kaitlyn was just off the charts with--
(19:02):
her body, was all rigid and stiff and,and my sister-in-law at the time, she just
said, we have no idea what you go through.
We have no idea what you gothrough, and the world doesn't.
That's why, and also we don't.
I never, for one second thought,I had a living clue what my
daughter and my son go through.
And I told them this, I don't,I can't because I don't have it.
(19:27):
Conversely though, you have no idea andmay you never have an idea on being a
parent with a child with this disease.
It.
Gary (19:36):
When I meet with parents, I
explain to them that, you know, I've
lived with diabetes almost 40 years now.
That is nothing compared to beinga parent of a child with type one,
because not only do you have a lot ofall the responsibilities and work and
effort that goes in, parents also feelaccountable for every little thing.
My blood sugar goes high.
I am like, screw it.
(19:56):
I'll get it down eventually, you know?
But a parent sees a highblood sugar in their child?
They take it very personally.
So it it, it is more challengingbeing a parent of a kid with type
one than it is living with it.
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(20:45):
And now back to our program.
Now you're, tell us about,you have articles you write.
Tell us about how people can getresources and information about being
a good dad with kids with type one.
Tom Karlya (20:57):
Well, not to be all and all,
but if anybody wants diabetes dad.org, you
know, there's usually a monthly column.
I'm always looking for people to give meideas on what they look at, but I think
if you're out there in general, one of,lemme give you my favorite place to go.
There's a guy on, on Facebook, hisname is Tim Brands, and Tim has done
dad's battling, dad's battling diabetesD-Dads for a, a long, long time.
(21:20):
And Tim is, he's about as regular guyand he, it was, the thing that was
really in imp impeccably encouragingabout him is, you watch this one
child got it, then another childgot it, then another child got it.
I mean, and he still runs this websitewhere, and he, he makes it really
emphatically correct what-- what yousay in that room stays in that room.
(21:43):
And you know, sometimes again, dad's,there's a, there's a whole bunch
of, of problems that dads need tonot only talk about, but understand.
There was one mom that I, shesaid, no, my child has slept in
our bed since uh, he was diagnosed.
And somebody at the meetingsaid, how long was that?
He said, two years.
And another father said, I'd divorce you.
He said, you, you can't,can't be in your bedroom.
(22:05):
Mm-hmm.
The bedroom is for the parents andit's just, you can deal with anything.
You have to work through it.
I didn't wanna say, talk aboutit, you gotta work through it.
It's never that easy.
We just talk about.
Gary (22:14):
Well, shifting gears a little
bit, anything you wanna ask me
as, as a dad Who has type one?
Tom Karlya (22:21):
Yeah, there is.
Um, I wanna know, wasit, you know, sometimes.
Parents are, you know,they're a certain way.
So by osmosis, the kidspick up who the parents are.
Was there ever a time where youhad to say, this is what Daddy has?
To your kids.
Gary (22:38):
It's interesting.
I have four kids and because I'vehad type one long before any of them
were born to them, I, I think it wasjust natural that dad has diabetes.
Um, he, you know, at the time, earlyon, he would prick his finger a lot.
He might give shots, he might wear a pump.
To them it was, it was kind of naturaland, you know, they grew up seeing that.
(23:02):
It's sort of like if you growup in another country, you just
learn the language naturally.
It's like immersion therapy.
So I feel like my kids were immersedin my diabetes from the get go.
It wasn't a lot I felt I had to explainto them, but when they were old enough,
I did teach them about what diabetes is.
(23:22):
Uh, 'cause now there're concernsabout the hereditary factor and
whether they were gonna get it or not.
You know, why doesn't mom do this?
Why do you have to do it?
So that, that I did teach them, youknow, just some of the background.
And as a diabetes educator, I, I'vegotten good at explaining things
in terms people can understand.
So I'll, I'll use analogies that, thatthey can relate to and explain it in, in
(23:47):
terms that are understandable for them.
So I think any parent who has type one,whether it's a mother, father, or you
know, other family member, you haveto bring it down to the child's level
and really put it in terms that, thatthey can understand and relate to.
We've, we've had funwith it over the years.
I remember when the first CGMscame out and I had a dexcom, STS.
(24:11):
This is the first Dexcom.
It was a three day unit.
I would misplace that handheldreceiver all the time, or at least I
thought I was my, I had two daughtersat the time and I had a deal-- dad
lost his Dexcom, you know, whoeverfound it first, got a dollar.
A dollar, then was good money.
They would scour the house andthose kids were really good.
(24:32):
And then I learned later on, after theygot a little older, they confided in me.
They said, dad, you didn't always lose it.
Tom Karlya (24:42):
Yeah.
Yeah.
I said they took it, they took it.
It's like, it's like what?
Years ago when the, when theglucometers used to be you, you put
your finger and you put a drop of blood.
Even the fact I'm saying itused to be this whole thing,
conversation just amazes me.
Put a broad, a drop of blood ona meter, a little flashing light
and it would give you you readingof your, of your blood sugar.
I didn't know this till yearslater 'cause a lot of kids went to
(25:04):
camp diabetes camp and at diabetes
the girls told each other that acertain color nail polish gives you a
certain, you see certain reading on,on, on, on, on the, uh, glucometer.
It was, uh, so they keep the stripand when they go, you know, then the
mother take, of course they, whenthey went to the doctor, you know,
eventually the, you're gonna payyour dues 'cause the doctor says,
(25:25):
uh, why is your A1C, you know, 8.75?
And, and mom's like, can't be.
Gary (25:30):
I'm wondering if Kaitlyn ever
drew her little brother's blood just
to get a normal reading before he wasdiagnosed, just to make it look good.
Tom Karlya (25:38):
Well, she did.
She and, and I, I cannot, I cannot tellyou the closeness of him and his sister.
He's, uh, she's, he justturned 30, she's 35.
So there's a good five yearsdifference between them.
And when she was probably 18,he gave her a birthday card that
anybody would just fall on theirknees 'cause this kid doesn't...
Gary (26:00):
nice.
Tom Karlya (26:00):
He just said, I, I
would not be here without you today.
And the fact that she's now.
Treating patients and now works forthe medical network here in South
Carolina dealing with type one diabetes.
I mean, she's, but.
He could never pullthe wool over her eyes.
She'd be like, try.
Gary (26:18):
Yeah.
It, it is a special bond.
Honestly.
It's, but when I'm at meetings,conferences with a lot of other people
with diabetes, there's, there's a oneness.
There's this, there is a bond.
This kind of, this unwrittenunderstanding we have with each other.
That you know, people who don'thave the disease, it's very
hard for 'em to understand.
But parents are the same way.
Parents have a bond.
(26:39):
Yeah.
And they, they connect with each other'cause they know, they can look at each
other in the eye and know, yeah, my kidshad lows at 3:00 AM now my kids called
me from school 'cause they're Sugar's400 and they've got a test and they deal
with that kind of stuff all the time.
How did you, I mean, I've got challenges,but you know, it's not like that.
I'll get, I'll have a high and lowblood sugars and it does affect things.
(27:02):
I hate getting lows, especiallywith my kids when I'm
interacting with them and I'll,
Tom Karlya (27:06):
so I was about to ask you,
I was gonna say, can you share with us
when you've gone through a lower high,where later you're like, oh, I don't
know who that was, but I gotta go...
Gary (27:14):
yeah.
Tom Karlya (27:15):
Well, did
you go back and visit it?
Gary (27:16):
The lows.
They're annoying, butI, I can deal with them.
The, the really high bloodsugars, they change my mood and my
personality to a certain extent.
And I tend to become a bitshort-tempered and rude.
And I'm just not myself.
You know, I'm not a nice guy to be around.
I'm not Mr. Charming like I always am.
Tom Karlya (27:34):
Of course.
Gary (27:35):
Yeah.
So that's not good with kids.
Kids don't, they don't understand that.
My wife now, when I'm in a bad mood, shejust says, check your damn blood sugar.
She knows something's up.
So do you circle back with.
Just say, look at that.
Sorry.
Tom Karlya (27:47):
Tell me, tell
me, tell me about that.
What do you do?
Gary (27:49):
Yeah, I'll apologize to them later.
I'll say, listen, I, I apologize ifyou know what I said didn't sound
like me, or if it hurt your feelings.
I wasn't really myself.
'cause my blood sugar was very high andI don't blame the diabetes, but It's
kinda like Carrie says, diabetes doesn't,uh, define me, but it does explain me.
Same thing.
I take responsibility for it myself.
(28:10):
I'm not gonna say it's becauseof diabetes has happened.
No, I behave this way because my,because I, my blood sugars got
outta control and that's on me.
I, i, I do want them to know itwasn't how I really felt at the time.
We do change.
Low blood sugars?
They're, they're a problem too,especially when you're playing with
kids, when you're taking care of them.
Uh, it can be a real challenge taking thekids to amusement parks and have my pump
(28:34):
site come out and have to go to the car,get a syringe, and give shots all day.
You know, that sort ofstuff's just not much fun.
Um, but yeah.
Yeah, there are.
There are challenges.
It does help me though.
Tom Karlya (28:45):
I was gonna ask you the
perks that it done anything like
that that it done anything like that?
Gary (28:49):
One of them comes home from
a party or comes home from trick or
treating on Halloween, and there's somestuff that looks pretty good to dad.
I've, I've faked some lowblood sugars over the years.
I, I'm, I'm not, I'm not ashamed.
Uh, I'll do what it takes to getthose treats and... Dad really
needs this chocolate bar right now.
(29:10):
It's for his health.
Or if I'm eating something-- andyou've been there, you're eating
something and you're really,
Tom Karlya (29:16):
I have no idea what,
Gary (29:16):
you love it.
You're eating something you love.
And the kids are like,dad, can I have some?
And I'm like, no.
My blood sugar's low.
I gotta, I need this right.
Tom Karlya (29:28):
You are so bad.
You are so bad.
Gary (29:30):
All right.
So yeah, I gotta try tokeep the sense of humor.
I mean, I think that's important.
So we start taking things too seriously.
It doesn't help anybody.
Tom Karlya (29:38):
Well, I think, I think,
I think there's a lot to that.
I think there's a lot when you canlaugh together at anything I. Because
you, you certainly cry together a lot.
Yeah.
And so when you, when you, when youlaugh, I mean, is it still a fear of
yours that your child could be diagnosed?
Gary (29:54):
Absolutely.
My kids have some other autoimmune issueslike hypothyroid, so it is something
I'm, I'm watching statistically.
If a dad has type one diabetes and the momdoesn't, the children have a four to 5%
risk of developing it in their lifetime.
And if the mom has it, it's about 2%.
But still it's worthwhile havingthe kids checked to see if they have
(30:18):
antibodies that cause type one diabetes.
If you have multiple antibodies,the chances of developing
type one go up exponentially.
And now we have a lot of things we cando to slow delay or even prevent the
progression towards insulin requirement.
So I encourage dads tohave their kids checked for
(30:39):
antibodies as well as siblings.
You know, if, uh, you have achild with, with type one, the
siblings should all be checked.
In fact, the parents should be checked.
If you're an adult with type one,your siblings should be checked.
First degree relatives of people with typeone should all be checked for antibodies.
I don't want people puttingtheir head in the sand.
I think empowerment is important.
Tom Karlya (31:01):
Absolutely.
And, and to, to be very clear on that,you need to be checked, not just once.
That auto antibody can happenat any time, so you have
Gary (31:09):
That's true.
Tom Karlya (31:10):
When we checked Rob,
Rob spiked when he was probably
three or four years old, hespiked to like 400 something.
And then it came rightback down to normal again.
And then we went to, they said, you know,people said, don't worry about, well, we
checked him of course, and it was nothing.
And then Dr. Skyler, who's probablyone of the foremost endocrinologists
in the world, who's at the DRI, Iwas talking to him and he said, he
said, you gotta, you what you need--
(31:31):
you have to make sure youcheck that every year if you're
not checking that every year.
My point, so if you are gettingto check, make sure you, you
keep it as almost an annual.
Type of thing, so,
Gary (31:41):
yeah.
Yeah.
And is there an easy way that peoplecan be checked for antibodies?
Tom Karlya (31:47):
Well, there, there are
a lot of trials out there actually.
I know Abbott is doing a, uh, Dr.Mettagini is doing a wonderful work
with Abbott to, to check about theautoantibodies and what's there
and, and... that's another thing.
One of my biggest things that I've beeninvolved with in my advocacy has been
the missed diagnosis of type one diabetesbecause it's, it's missed so often.
(32:07):
It's a stomach flu.
It's a stomach virus.
You know, there was Regan Rule, there wasKaisies, there was, there was all these,
these young people who died at very youngages and not to scare people, you know,
school nurses-- who are on the front line.
If a child comes in and they're,and they're throwing up, it doesn't
necessarily mean it's a stomach virus.
Probably 90% of the time more it is,but at least get it on the parent's
(32:31):
radar that, that if it doesn't go away,they should probably, you know, check.
You can pick up a meterfor a couple of bucks now.
Gary (32:37):
So trialnet.org is
the website you can go to.
You can learn all about your optionsfor getting screened and TrialNet offers
free screening all around the country.
And it's a, it's a, it'sa smart thing to do.
Tom, I want, I wanna wrap up.
If you have one piece of advicefor dads of kids with type one,
what would it be?
Tom Karlya (32:58):
Be there, be there as
much as I say, just don't do nothing.
You can use that in your child's life too.
Be there, be there for yourchild, be there for your partner.
Be there because if you're not, youimmediately take away a, any 50% of
the chance of them having a as normallife as they could possibly have.
(33:18):
If you're not in your child's life, ifyou, I don't-- divorce, not divorced,
whatever it is, if you are not there,50% of their opportunity is gone.
So stay in their life, be there.
And then anything else that you have tofigure out that you have to do, can do,
will do support research, take up theball games, do what, whatever it is.
But you can't do that unless you're there.
Gary (33:40):
Yeah.
That's something you saidearly on in our discussion.
Not everybody is independently wealthy.
Not everyone can donate gobs ofmoney to the cause, but you can
volunteer your time and you can bethere for your child to assist them
and guide them and nurture them.
Um.
I think what you said about having open,honest communication with your partner
(34:01):
about the, the roles and responsibilitiesis very important, and even people who
aren't comfortable communicating that waywith a partner, you need to do it because
as you said, it's important to your child.
It's very
important.
Tom Karlya (34:17):
And never forget the story
of the kid who's on the beach and he,
there's this 10 million starfish and hepicks up a starfish and he throws it.
You know, an old man sees a starfishand he throws it back in the ocean.
He walks 20 feet, picks up anotherstarfish, and he throws it back in the
ocean, sees another starfish, picksit up and throws it back in the ocean.
He does this for about a mile and ahalf, and he comes across this little kid
(34:39):
who's been watching him the whole time.
He says, old man, what are you doing?
There's millions of starfish there.
He said, you think you'remaking a difference?
And he answers, I am inthe ones I'm throwing back.
Gary (34:50):
Mm-hmm.
Tom Karlya (34:50):
So, so you can't
be everything to anybody.
Everybody pick what you can.
You know, I did this, there's a mom fromTexas, her name is Kim May, and we started
this thing called Get Diabetes right.
Here's something you can do, youdon't think you can do anything.
Go to get diabetes right.
In there you have posters and flyersthat you can print off, and all
it is is about diabetes awareness.
(35:12):
We get no money for this site.
We don't do, all we have are educationmaterial that people can download,
print it out and put it up in thelibrary, put it up where we put
it up around town because somebodycould see that and be, you know,
and then maybe they'll, it'll click.
So education is is never ending,and we have to constantly look for
ways to let people know that thisdisease can sneak up on anybody.
Gary (35:37):
Yeah, right on Tom, and to you
and all the other dads out there,
whether you have a child with typeone or live with type one yourself,
we love you and if you, there'sanything you ever need, you reach out.
Our, our team at Integrated Diabetes ishere to help whatever your needs are.
Tom Karlya (35:54):
And you have
been, I've called on you.
I've called on you whenwe've had people in need.
And Gary, you certainly have beenthere and, and we appreciate all
the work that, that you do not onlyhear, but in your practice as well.
Gary (36:05):
Thanks for putting your trust in us.
So thank you Tom.
The links you mentioned are gonnabe in our show notes, so I am Gary
Scheer reminding everyone out thereto keep thinking like a pancreas.
Tom Karlya (36:16):
Happy Father's Day.
Gary (36:17):
Thanks for tuning in to
think Like a Pancreas, the podcast.
If you enjoy today's episode, don'tforget to like, follow or subscribe
on your favorite podcast app.
Think like a Pancreas-- the podcast isbrought to you by Integrated Diabetes
Services where experience meets expertise,passion meets compassion, and diabetes
(36:37):
care is personal because we live it too.
Our team of clinicians all livingwith type one diabetes understands
the challenges firsthand.
We're here to help no matterwhere you are in the world.
From glucose management to self-carestrategies, the latest tech,
sports, and exercise, weight losstype one, pregnancy and emotional
(36:58):
wellbeing, we've got you covered.
We offer consultations inEnglish and Spanish via phone,
video, chat, email and text.
Wanna learn more?
Visit integrateddiabetes.com oremail info@integrateddiabetes.com
to schedule a consultation.
On behalf of Think Like a Pancreas,the podcast, I'm Gary Scheiner,
(37:20):
wishing you a fantastic week ahead.
And don't forget to think like a pancreas.