With the increasing number of individuals living more than fifty years with type 1 diabetes, Episode 57 of Think Like a Pancreas—The Podcast features Kathryn Alvarez, Director of Exercise Physiology and Teen/Young Adult Specialist at Integrated Diabetes Services, in conversation with blogger and advocate Joanne Milo.
Together, they discuss strategies for effectively navigating the later stages of life with type 1 diabetes like the importance of community support, emergency preparedness, and advocacy for better healthcare for aging individuals with Type 1 Diabetes.
This episode is sponsored by Tempramed, makers of Vivi Cap
https://tempramed.com/pages/vivi-cap-boxd
MEET YOUR HOST AND HER GUEST
Kathryn Gentile-Alvarez, MS, ACSM-CEP, EIM II, CPT, CSNC, CDCES is the Director of Exercise Physiology, Teen/Young Adult Specialist for Integrated Diabetes Services. As a Certified Diabetes Care & Education Specialist and Exercise Physiologist, she specializes in sports performance, technology integration—including open-source and DIY systems—and counseling young people and families affected by type 1 diabetes. Diagnosed herself at age twelve, Kathryn holds degrees in Exercise Physiology from Ave Maria University and West Chester University, and certifications from ACSM and ISSA. Her work focuses on using advanced technology and personalized exercise prescriptions to help people with diabetes manage their health and thrive.
Joanne Milo has lived with Type 1 diabetes for 60 years and just launched a brand new project called T1D to 100. This website is an incredible resource for people aiming to thrive with type one diabetes in every decade of life.
Joanne is also well-known for her long running blog, the Savvy Diabetic, and helping to build the amazing loop and learn online community.
WHAT YOU’LL LEARN:
✔️ More adults are being diagnosed with type 1 diabetes much later in life.
✔️ Community support is crucial for those living with diabetes.
✔️ Aging with Type 1 Diabetes presents unique challenges that need to be addressed.
✔️ Emergency preparedness is essential for managing diabetes as we age.
✔️ Advocacy is necessary to ensure proper care for aging individuals with diabetes.
✔️ Healthcare providers need to be educated about the needs of aging T1D patients.
CHAPTERS
00:14 Welcome and introductions
01:36 The inspiration behind T1D to 100
06:52 Navigating a medical system that wasn’t prepared for seniors living with type 1 diabetes
11:34 Addressing the Challenges of Aging with Type 1 Diabetes
14:44 A new potential role for parents of adult children with type 1 diabetes
16:36 The role of the diabetes community to bring about change in aging care
21:30 The importance of community engagement for seniors with type 1 diabetes
28:51 Creating a Go Bag for Emergencies
32:25 Why you need a personal medical resume
36:03 End-of-life considerations for people with diabetes
37:14 The key to successful aging with type 1 diabetes
49:17 Advocacy and Awareness for Aging with Diabetes
RESOURCES MENTIONED
https://t1dto100.com/
https://www.facebook.com/groups/t1dto100
https://www.instagram.com/t1dto100
https://www.linkedin.com/company/t1dto100
Blog | The Savvy Diabetic
Secrets of the Longest Living People with Type one Diabetes by Sheri Colberg
https://www.amazon.ca/Secrets-Longest-Living-People-Diabetes/dp/1600940188
CONNECT WITH US
🔵Website: integrateddiabetes.com
🔵 Follow on Social Media: @integrated_diabetes_services and @ integrateddiabetesservices on Facebook
🔵To work with the Integrated Diabetes Services Team , visit https://integrateddiabetes.com/how-to-start-the-process/ , or email info@integrateddiabetes.com
SUBSCRIBE AND REVIEW
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Also, leave a review to let us know what you think, and share this episode with others who will enjoy it as well!
MORE GREAT EPISODES LIKE THIS
The Burden of Diabetes and Self-Advocacy
attention, and this is what it looks liketo grow older with Type one Diabetes.
My guest is Joanne Milo, who haslived with T1D for 60 years and just
(00:55):
launched a brand new project calledT1D to 100, which is a resource website
for people aiming to thrive with typeone diabetes in every decade of life.
Joanne is also known for herlong running blog, the Savvy
Diabetic, and helping to build theamazing loop and learn community.
Joanne, welcome.
It is so good to have you.
(01:15):
Thank you, Catherine.
It's, it's great to be here with you.
It's always wonderful.
Yeah, you're just so incredible.
So, um, and just one of my favoritepeople and just so glad that diabetes
brought me to you and to be able toget to know you because of this, this
thing we have to deal with every day.
Is there anything that really sparkedyour desire to create this website?
(01:41):
Yeah, it's, um, well, the way I look atall of this is everybody's on a journey.
We're, we're born.
We live our lives.
Mm-hmm.
And then we kind, there'san end game and then we die.
I mean, it's, it's just a reality.
And if you're doing that with T1D,it's just that much more complicated.
And, um, I, I think I was maybe in mysixties and started to have some medical
(02:07):
issues or surgeries and started to geta little concerned that... I looked at
the end and looked at my, my husbandand thought, I don't have children.
Who's there for me?
What am I gonna do?
And, and I talked to a lot of people andI started to hear older people getting
frightened of-- they're frightened alone.
(02:30):
They're frightened of what's going tohappen, who's gonna take care of me?
And I started to look at thatand thought, there are no answer.
There's no, nobody's talking about this.
Mm-hmm.
Uh, I told a group of friends,long-term T1Ds, to my dining room
table, and we sat around about 10of us saying, what are the issues?
(02:52):
What are we concerned about?
What do we think we need help with?
And came up with a list.
I chatted with Bill Polanski and PaulMadden on a Zoom and said, I, I, I really
think we need to pay attention to this.
Bill said to me, well, what's the problem?
You're living longer Isn'tthat just wonderful?
(03:14):
And the answer is yes, of course.
We're very grateful.
It's technology that's let us live longer.
But the reality is nobody knows whatto do with us and no one knows how to
comprehensively take care of us andmake sure we are safe till end of life.
And became real clear to Bill and to Paul.
This is an issue andnobody's dealing with it.
(03:37):
No one's looking at it, no one's settingup safeguards and, and systems that will
work for us, and very little research.
And so I thought, we need to do thatand we need to educate ourselves
because I've learned over 60 years,we have to advocate for ourselves.
(03:58):
There aren't that many T1Ds total.
There are more, there are moreT2Ds, there are more people.
We have to take care ofourselves first and foremost.
And, and I'm used to advocatingand I'm used to being a loud voice
and say, there's a problem here.
Um, so we met several times andwe made a list of things that
(04:19):
we thought were major issues.
I just started putting it together,saying, what do we do with this?
What, how do we get attention?
How do we, uh, get the researchcommunity lined up with us?
And so I've connected very, verywell with research community.
And then on a visit to my endoon a day, there were just issues.
(04:44):
And he said, how are you doing?
I said, I, I'm, I'm tired of this.
I'm just overwhelmed and tired of it.
And he said, no, not you.
And I said, yeah, um, I am struggling.
And he said, I'm sorry to hear that.
And then the appointment went on.
(05:05):
It wasn't even addressed yet.
I was taking calls frompeople going, I'm scared.
What do I do?
And I thought, we, we need to address it.
So, um, that was the beginningof the decision that we
need to get out information.
It's knowledge that helps us plan andat least not get caught by surprise.
(05:26):
Truly informational.
Share the information.
Connect to the research community,and then educate caregivers who
really don't know what to do with us.
And as an aside, I thinkthey'd rather not deal with us.
Um.
Yeah.
We're not as, as 10 year olds and we havefar more problems, um, complications,
(05:50):
issues, uh, comorbidities, and, um, weare complicated and we take more time
and it, it piles up and it gets worse.
So it's like how do weprepare for that future?
It seems like so many providers justhave thought of type one diabetes, of
(06:11):
this juvenile disease, and for so long,just it seems like they forget that
people with type one diabetes get old.
And oftentimes people with type onediabetes are diagnosed later in life.
I mean, the amount of people I'vemet that weren't even diagnosed
until they were in their sixtiesis... Truly, it's blown my mind.
I never even realized until Istarted meeting so many people.
(06:35):
Well, I, I was diagnosed in 1965 and atthat time, most of us we were told we
would not live past age 40 and, and I'm
terrible.
71. So that, that numberhas gone by the wayside.
But we weren't expected to be here.
A lot of women were told not tohave children, um, because of
(06:57):
the stress and the difficulties.
Without the technology that justwasn't even thought of at the time.
Mm-hmm.
Um, so we got a lot ofages who are careless.
They have no next generation.
Yeah.
We are living longer.
There are way more beingdiagnosed as adults.
And actually, I think the statisticsI recently heard through, uh,
(07:20):
Breakthrough T1D, there aremore adult T1Ds than children.
Yes.
So we've, we've tipped thescales and the over 60 crowd
is a fast growing demographic.
We're still here.
Mm-hmm.
And, but nothing is really preparedfor us coming on in such large numbers.
Yeah.
Yeah.
It seems the only way where they've reallypaid attention to the adult population
(07:45):
is with a lot of the technology.
I mean, majority of the things we usework better in adults than they do in
children, but kind of beyond that point,it's, it's just like a forgotten age.
So in coming together with thegroup in your dining room table,
what were these ideas thatflourished as you guys discussed?
(08:08):
Uh, we were furiously taking notes andit, it boils down to, there were a lot
parts to it, uh, but it's basically,um, who's gonna take care of me?
How do I get prepared, prepared foremergencies, falls, all the things
that change of your living situations?
Where am I gonna live and how?
(08:29):
What does that look like?
What's gonna happen to my body?
And the more I hear it, the more thingsare blamed on T1D and long term T1D.
Doctors aren't always screening forthere, there are lots of issues.
How do I keep coping?
Um, as you age, as anyoneages things happen to you.
(08:50):
You know, you get conditions.
You get new diseases.
You have falls.
And how do you keepbouncing back emotionally?
Uh, as you age, asanyone ages there's loss.
You lose your driver's license.
You lose your ability maybe tolive alone or cognitively you
(09:10):
lose your, your grasp on things.
And how do we, we're trainedto control our diabetes.
That's the big word, is control.
How do you do, if you're getting tired,you're cognitively a little bit off,
you miss a step when you're doingyour, your insulin infusion changes?
(09:32):
That's all real frightening.
And then what happens if you'resupport network isn't there anymore?
Partners die.
Um.
Yeah.
Children don't support aging parentsand the technology is confusing.
And then you have systems, you havehealthcare and hospital systems
(09:54):
that really are just beginning tounderstand, don't pull devices off of
people when you're in the hospital.
You know, listen to the patient.
But that's not everywhere.
And, um, so we're saying don't pulldevices, you know, work with whoever's
taking care of you in the hospital.
Mm-hmm.
Let them know that it is type onediabetes, not type two diabetes.
(10:17):
I, I've had several hospitalizationsand surgeries and I finally said,
I think we should have a wristband.
A paper wristband like theygive you in the hospital.
Um
mm-hmm.
Say fall risk or allergic to penicillin.
I wanted one that saidT1D or Type one Diabetes.
Yeah.
And asked to look at the hospital andthey said it would take five years to get
(10:38):
through compliance to order wristbands,so I ordered 500 of them for $75.
Had 'em printed.
Anytime I go to the hospital, I put it on.
I share it with anyonewho wants one of them.
It's easy, easy to do.
And the last time I was in the hospital,I was in pre-op and I said, excuse me,
(10:59):
do you mind if I put on my wristband?
And they said, you don't need that.
We, we understand.
And then they went through theirquestions and they said, I see
you have type one diabetes.
And I said, yes.
And they said, do you need insulin?
And I thought, they don't understand.
That's what the wrist band is for becauseif, if you can't speak, you can hold up
(11:20):
your wrist and say, Hey, look at this.
This is important.
Yeah.
So it's all these safeguards andtricks and tips that we can share in
our community just to make us safer.
Mm-hmm.
Um, then there's stories,people's stories.
We wanna know how people dowhat they do as they're aging.
One lady I was talking with and she wasliving a lovely life and suddenly her
(11:46):
husband had a stroke and died and shesaid, I always thought I'd go first.
I think that's what we don't plan.
Our caregiver will be there.
We'll outlive him.
Yeah.
And its not a guarentee and her,we've written about her journey.
We interviewed her and she'sthe epitome of, one of the
fears we have is, what happens?
(12:08):
And how suddenly does it happen?
And how can you be aware?
She didn't know how, what the passwordswere to get into the computer.
She didn't know-- he did the financesand we interviewed her and that
night, both of us who interviewedher couldn't sleep going, uhoh.
Yeah.
We better prepared for this.
(12:29):
You don't want these things, butthey do happen and they will happen.
So everything we can do to share that andhelp people be resilient in this journey
seems just essential at this point for us.
Yeah, absolutely.
And it really is like-- going intoassisted care, having that plan in
(12:50):
place makes such a big difference.
Like it's not fair to go in and, andhave to give up what you've been using
for years because they'll only allowyou to do MDI or um, take over that
control of, of how you want to navigate.
Oh, put you on a sliding scale.
Oh my gosh.
(13:10):
I learned a lot about options forliving if you aren't able to stay
in your home or you don't want to,
mm-hmm.
Some places have a huge surchargeon type one diabetes patients.
Um, they don't want them,if they do, it costs more.
I, I heard someone gets,gets charged per injection.
(13:33):
Um, I've heard others wherethey don't have night staff that
is authorized or certified todeal with a type one diabetic.
So if you say, I have low bloodsugar, they call the paramedics
instead of giving you some juice.
It's an education process.
It's a change of the system.
And it's also critical that we haveallied health providers who are
(13:56):
knowledgeable about this disease andcan understand the devices and help us.
Mm-hmm.
Um, we, we will need help and there'sa real lack of prepared people.
And, and the issues ofliability if I touch a pump.
So how do we make surewe're safe as we age?
Yeah.
It's such a big thing that the website is,I mean, that's a huge start, but we have
(14:24):
to get that to these healthcare providers'cause they need to make a change.
We can be super prepared, but ifwe grow old, we lose our family
members, even if we have a plan andthey're not willing to follow it,
you know, what, what are we gonna do?
Parents whose kids had, they, theytook care of the kids as type ones, as
(14:47):
children, and they needed to be takencare of, and then the kid goes to college.
This parent with all this knowledgeis kind of put out to pasture.
Their knowledge is not being used.
How do we use those people to be, providesupport for an elderly person who can't
quite remember how to put on a CGM?
Yeah.
And even sit there and step it through.
(15:10):
And even if these people weren'tlike, you know, licensed providers,
how can we get them to help?
I see how that could make such a bigdifference because of course they know
how to insert a CGM and um, yeah, theywould be excellent to join the team of,
you know, these facilities right there.
(15:32):
Not enough and certainly not enough alliedprofessionals that we, we need more help.
And, and with this demographiccoming on so strong, it really
needs attention because people willnot get the support they need and
they'll end up in the hospital.
And that's another burden of,of cost and burdening the system
(15:54):
that doesn't have to happen.
Yeah.
I wonder, did were any, did any ideascome out of ADCS of like, what we could
potentially do to better prepare likeour, you know, hospitals and long-term
care facilities and places like that?
Not, not yet.
I, I, I think it's beginning.
I was on a meeting lastnight with my team.
(16:16):
Mm-hmm.
It was last night and this morning Igot an email from one member saying
she spoke to another, uh, diabeteseducator and they're looking at
how to provide that kind of care.
So it's beginning and it's gonna comefrom our community, and it's going to be
to keep pushing the educators saying, youhave the skills that we're going to need.
(16:39):
You can make money here.
It's okay, you can get coverage,but we're gonna need the help and
we're gonna seriously need it.
And people can do well ontheir devices for a long time.
Uh, but a lot of people are gonna needsome support and, and, and it gets,
bringing back to the, what are someof the issues as you physically age?
(17:02):
Sometimes it's hard to open devicesand I've had difficulty opening CGM
containers, um, I have arthritis and youknow, how do we make those things easier?
Uh.
The, the other issue that came up, andI didn't understand it was an issue,
but it is, is physical geography.
(17:24):
Someone mentioned it in ourearly meetings since, I don't
know what you're talking about.
We've been poking ourselves for50, 60 years with needles and
infusion sets, and we've beenthe CGMs and our skin is damaged.
Our skin gets sick.
We age.
We lose the fatty layer.
Um, where do we stick the devices?
(17:46):
And so we came up with a, an amazingdocument called "Skin in the Game"
of all the community input of thingsthey use that make it easier for your
skin to handle all these devices.
A local university and theirdepartment of dermatology because
the head of the department is a T1D,
mm-hmm.
(18:07):
And, um, he says, how do we validatethat this skin thing is a big thing?
I'm running outta spaces, you know,I've used that for so many years.
So, um, it's just shedding the lighton the-- it's different now for us.
Um, there's another area that we can touchon briefly, but digestion and the way
(18:28):
our bodies handle hypo and hyperglycemia.
Lots of parts of this and we'll bedoing some seminars on it, but bringing
your blood sugar up from low sometimesdoesn't work the way it used to.
Right.
Being that it doesn't work the wayit used to as we aged, let's get
the knowledge out and the toolsthat say, all right, it's changed.
(18:52):
Here's the new way we do things.
And just education.
Yeah, and not even just digestion.
Have you noticed changeswith insulin impact?
Absolutely.
Yeah.
It's, it's your body is shifting and, andchanging and, uh, the liver's involved
(19:12):
and, and your, your, your nervous system.
So digestively, um, I did a, a, apresentation a few years ago with, um,
some experts at Stanford on digestion.
And it's a tricky issue thatnobody wants to talk to.
Mm-hmm.
And talk about.
It's unpleasant.
It's important.
And probably 50% of long-term T1Dsare dealing with gastric issues.
(19:35):
Yeah.
We don't wanna talk about it.
Um, neuropathies are things we'drather deny, but they are real.
And particularly this first wave ofaging, T1Ds didn't have the benefit
of better control, better technology.
Mm-hmm.
So maybe subject, beside the disease,to have more issues of complications.
(20:03):
So is
it's a, how do you handle it?
Yeah, yeah.
Complications in general are just sohard to talk about and it certainly makes
people feel ashamed or embarrassed or, youknow, there's just so many words and yeah,
they don't want, wanna talk about it.
(20:24):
Just, yeah.
I don't wanna go there.
I don't, I don't wanna involve my spouse.
I know.
I just, I don't wanna talk about it.
Which, which is totally understandable.
Yeah.
Um, I had that discussion thismorning with my husband because I, we
talked last night and he said, it'sthe first time I really understood
an issue, that I was having.
And I said, I don't like to talk about it.
(20:44):
I just, I don't wannasound like complaining.
I, but it's real.
And I'd rather not saythose words out loud.
Um,
Yeah.
But they exist.
So maybe if we can share on a websiteor uh, a Facebook group where people
can actually feel safe to talk.
Yeah.
It'll help us understand and,and get some solutions that, that
(21:06):
make it a little bit easier andfeel like part of the community.
Yeah.
I think everything, for most people,everyone is different, but for most
people to feel like they're not alone,they have support, they have the ability
to find a community going throughthe same things as them means such...
that is probably the biggest thing thathas come out of this, and it's not new
(21:28):
is, is community and social interaction.
I, we just published, um, uh, anews article about like super agers.
The people that live long and theyhave studied super agers and it isn't
what they eat, it isn't what they do.
It's their connection to community.
That is their centralpoint is stay involved.
(21:52):
Stay connected.
Even if you're an introvert,stay part of a community.
You benefit so much thatit becomes essential.
So we're, we just put, putout a, um, document on how to
start your own support group.
How do you find a dia buddy?
How do you reach out?
(22:12):
Um, I, I met somebody who, uh, atthe age of 60 had never met another
T1D, and we invited him to just a, alittle, uh, coffee group that we had.
And he sat there with eyes wide opengoing, oh my gosh, you guys understand?
Um, and he's the one that cameup with the name T!D to 100.
(22:36):
He said, do you know, I thinkmaybe I can live longer.
And it, it was this awarenessthat, I'm not alone.
Yeah.
It's a very lonely journey becauseeveryone's diabetes is different
and unique, but you don't have to.
You don't have to do it alone.
And, and so we're really pushingthe concept of connect in any way.
(23:01):
We, we have the resources of thecommunities that are open for
groups and group walks or gathering.
So...
How do we keep people connectedwhen they get to 80, 90, 100?
Kind of when they're at that point thatthey can't get out so much anymore.
Yeah.
Well, thank goodness for Zoom.
Yeah.
Um, there are several Zoom eventsthat are so warm and welcoming.
(23:27):
A discussion yesterday on howdo you keep them positive?
Because everyone, very often peoplelike to talk about the dramatic events
that happen or the, the injusticeand, and things that don't go well.
And, and that has a place uh in a group,there's a sense that you can be uplifted
(23:47):
in a way and at least not feel so alone.
It's like you come away,go, yeah, I get that.
They understand me.
Mm-hmm.
Um, so it, it's interesting, as you getinto your eighties, you are more isolated.
Mm-hmm.
Um, that's something we're gonnahave to address is, how do we
reach into those people as well?
(24:09):
Um, social media helps and, andI'm seeing groups with, you know,
50 years plus and, and they,people join and go, Hey, I'm here.
And it's, it's a, it's a whole interestingawareness of, I have somebody to
talk to and listen to and be part of.
So it's, it's so, so essential.
(24:31):
Not just diabetes, but, um,to live well is connection.
And particularly with this disease,which is so, so, so hard, uh, uh,
people live well with this, but I alwayssay, it is a tough, tough disease.
It is constant.
You didn't ask for it.
(24:52):
You don't get paid for it.
It costs you money and it's unrelenting.
How do you keep going?
And it's, it's talk to othersthat are doing the same.
It it has.
Yeah, I totally agree.
I think doing it aloneis, is really difficult.
Finding the community that also liveswith it is what makes a huge difference.
(25:14):
Cause, you know, talking topeople that don't live it, I
think most of us get frustrated.
I literally live, I talk to peopleabout diabetes all day, but my family
and my friends are totally clueless.
I mean, they no way could I evertrust them to do anything for me.
So.
That's interesting.
And, and, and it's not unusual at all.
(25:35):
And, and it's okay.
I don't particularly wanna knowwhat your problems are either.
I don't live their life.
Yeah.
And I don't like to feel elitist.
Like, if you don't have T1D, youdon't understand, the bottom line
for me is you don't understand.
You can't possibly understandwhat 24/7 feels like as a T1D.
(26:03):
I used to say we're 24 hours away fromdead, and, uh, a doctor reminded me, No
you're actually six hours away from dead.
I said, well, thank you for that, but, um.
Thank, yeah.
I said growing old with this disease,it, it's so very constant that connect
with others who really, truly understandnot to take away from the support
(26:24):
people, the spouses, the parents,um, they have a different journey.
Yeah.
Um, I, I don't know what it's like tobe a parent of a child with diabetes
and I didn't understand what my parentswent through, and I think I was 35
years old when I finally thanked myparents for the support they gave me.
(26:44):
Uh, and stopped beingangry at the whole thing.
So.
Mm-hmm.
Um, that's a different journey.
Yeah.
Yeah.
It really is where you're at right now.
Before we dive furtherinto today's episode.
I want to give a quick shoutout to our sponsor, TempraMed
makers of the Vivi Cap device.
If you use insulin and whodoesn't use insulin, you probably
(27:07):
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(27:27):
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(27:48):
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So if you want to take one more variableout of your diabetes management, check
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(28:14):
Now let's get back to today's program.
What are some things, and I knowyou recommend this on the website
too, but what are some thingsthat you have prepared for aging?
You know, I think you talk aboutlike your emergency planning and
um, you know what you have for that.
You talk about like health and wellness.
(28:35):
So what would you like encourage people?
The primary push that we've hadfor quite a while, all through
COVID as well, is a go bag.
And what, what we've put up onthe website is a checklist of
what you put into your go bag.
Mm-hmm.
And urgency is, just make a go bag.
Just get a backpack.
(28:56):
Get a bag you like.
Anything that, you know, we say waterproofbecause you may be in a place where
it's raining as you well know today.
Florida.
Um, or that's hard enough tohold two weeks of supply because,
what if there's an earthquake?
What if there's a tornado andyou have to get out quickly?
(29:16):
You have to go to the hospital.
Grab your go bag.
Grab your insulin from your fridge, andgo, instead of having to sweep it into
a bag or figure out what you're taking.
It takes less than anhour to put it together.
Yep.
On the website we havepictures of people's go bags.
They come in all differentcolors and directions.
(29:38):
I did a Zoom with NicoleJohnson, who was the first Miss
America wearing an insulin pump.
And we talked about go bags and she showedher go-bag, which was this beautiful
tote bag with the logo of Miss America.
And I said, you don't wanna use that'cause someone's gonna steal your bag.
They don't want-- it's a beautiful bag!
(29:59):
But whatever is durable enoughthat you can grab and go.
And even if it's not emergency.
Suppose someone calls you and say,I have two tickets to go to Paris.
Do you want them?
You have to leave in an hour.
Just grand.
You can.
It doesn't have to be a drama.
What came up in a meeting lastnight was you can also set up a mini
(30:21):
go bag um, and, and I'm beginningto realize how important this is.
Anytime you leave your house and you'regonna be gone for more than an hour,
mm-hmm.
What if your insulin infusionsite fails while you're out?
What if you get a flat tire andyou're waiting for the tow truck and
you, you need to change something?
(30:43):
Um, a little kit that has insulininfusion set, uh, syringes and,
you know, and sugar grab it and go.
Too many people who shouldknow better don't have these.
They say,
Right, exactly.
I won't be gone.
And don't know if you'renot gonna be gone long.
(31:04):
Right, exactly.
And you never know what's gonna happen.
I mean, and this is for all ages.
This isn't even justfor the aging population.
I mean, everybody, I think,should have this go bag.
And I love the name.
I just love this "go bag".
Um.
Go.
Yeah, I mean, I have like a littlepouch, but I do forget to grab it
sometimes, even though it's literallyhanging right in front of my door, so.
(31:28):
Mm-hmm.
Also, like you, you mentioned syringes.
I mean, keeping syringes likeeverywhere so that, um, like for
me, like me, if my pod's gonna fail,I'm gonna pull my insulin outta my
pod and inject until I can get home.
Diabetes is stressful enough.
Don't let something that's not inyour expectation happen and then make
(31:50):
your life a little bit worse when allyou need to do is go get this cute
little bag and carry it with you.
Yeah.
It's not that difficult.
It is a reminder that you have diabetes,but that's not the point of it.
The point of it is to reduce stressand the things are unforeseen
because you don't foresee them.
They happen when you don't expectthem and don't need them or want them.
(32:14):
Um.
Mm-hmm.
And it just takes the awaya stress just a little bit.
So we have, we have checklist for go bags.
Um, I also always recommend haveyour medical data in one place.
How you take care of your diabetes.
The medication lists thatyou, whatever it is you take.
How you take when you take it.
(32:35):
Um.
The list of your healthcare providers.
So if an emergency comes up and youend up in the hands of a medical
environment, you, you don't have to, uh,remind them what your surgeries were.
What your medication are.
It's right there.
So yeah, we have pagesthat you can fill in.
You can scan 'em in and put'em on a, on a flash drive.
(32:58):
You can load 'em on your phone.
There's a way also... so that's whatwe call a personal medical resume.
Just have your stuff in one place.
Update it every six months.
Um, and maybe we'll put a reminderon, you know, it's time to update.
Yep.
Just you have the stuffavailable and ready to go.
(33:19):
Mm-hmm.
Set your... people have mobile phonesthese days that you can set up Android
or iPhones for emergency access.
Most people don't know that and sowe have instructions for both phones,
um, on how to access that and put in.
So emergency personnel or anyone that ishelping you can get to your information.
(33:41):
Mm-hmm.
So it's just tips and tricks andthings that we don't think about,
but as a group, we have thoughtabout them and we are adding things.
Mm-hmm.
To make it, just make it easier.
It's hard enough.
So, yeah.
Yeah, thinking of like this emergencyfolder of, of our information just is
so helpful because, you know, a lot ofthe healthcare systems, they do have,
(34:05):
they can eventually access all of yourhistorical things, but that takes time.
It's not like they can just hop onand right away they have all your
history, but if you bring it along,like you're, you're setting yourself
up for potentially better outcomes.
Yeah.
I have a little clear cover littlebinder and it's in, there's one in
my car, there's one in my Go bag.
(34:26):
When I've been in the hospital,I put it on the nightstand.
And it says, "read this. I have typeone diabetes." It's big and it's bold.
Whether they're gonnaread it, I don't know.
But if they come in and ask a question,you can refer to it and say, Hey, this,
these are my settings on my insulin pump.
Mm-hmm.
This is, these are the medications I take.
(34:46):
These are the ones that are centralmedications, not just supplements.
Um, because they don'tyou, but you know, you and
Yeah, but also you can't speakclearly for yourself a lot of
times in a hospital situation.
So you thought and...
Your advocate may notknow all the details.
Right.
(35:07):
Exactly.
Yep.
It, it, it just, it takesa little preparation.
I don't know how to help people carveout the time to do it, uh, but I think
it's an intention that you say, youknow, I just wanna feel a little safer.
I want that problem to be gotten rid of.
I'll take a half an hourand pull it together.
(35:28):
Mm-hmm.
It's just, it's a planning thing.
A lot of people don't like toplan and I understand that.
Right.
But a lot of peopledon't like stress either.
Let's see if we can reduce the stress.
Aging alone is stressful becausethis topic, it's difficult.
It's just really, really difficult.
Nobody really wants to facethe fact that we won't be here.
(35:50):
As far as I know, that's a reality andwe, and we will all be on that path.
So, one more topic, and I think it's justimportant to say real quickly, mm-hmm,
towards end of life and if in hospicecare, this is something I just learned.
Um, there is a thinking thatyou withhold insulin at end of
(36:11):
life and that is possibly theworst advice that can be given.
I never thought about it because Ididn't think about that part of life.
You will, it will, you will end yourlife, but it will be a bad way to go.
So you should have written into yourwishes, do not withhold insulin.
Yeah.
But it happens.
(36:32):
So this is all just trying to makethings as easy, least stress and make
you feel as good as possible for allthe days you have left going forward.
Yeah.
It's just,
yeah.
Be set up to succeed and to be as happy aspossible, because that's what you can do.
(36:53):
Right.
Yeah.
That's in our, in our own control.
What are some things that you think,just kind of in all of your discussions,
has been like, have you found anytrends for what has helped lead
you guys to aging so well with T1D?
Because I mean, I look at you, I knowyou, you go to Pilates and you are
(37:16):
living like a great life, um, from aphysical activity standpoint, and you're
enjoying the things that you wanna do.
Is there, like, do you feel like, youknow, it's, there's things that you did
that led you to be able to age so wellalready, even, you know, you didn't have
all of these tips, so how'd you do it?
The overriding thing for me is to try tolive as best as possible in, in gratitude.
(37:41):
I, I am, when things go wrong,and, and quite honestly, they're
going wrong at a faster pacethan I can actually keep up with.
But when they do go wrong, I, I veryoften go to, but I'm still lucky.
I, first of all, I live in thiscentury, not the previous century
where the technology wasn't there.
Or I'm grateful that,that the sun is shining.
(38:01):
I, I sometimes have to reachfor the gratitude, but it just
kind of makes me feel better.
All the research says keep moving.
Just if you look at anything on zones orwhat the long agers do, they keep moving.
Don't sit, don't sit and watch tv.
(38:22):
Somehow get up and move and interact.
And so also stay connectedin the community.
Um, in, in my Pilates class, I'veheard instructors say, we do this
exercise not because if you fall,it'll help you get up and it's when
you fall, it'll help you get up.
(38:43):
Yes.
As we age, we have nerve damage.
We have proprioception falter, andwe are far more prone to falls.
Mm-hmm.
Uh, if vision issues, or you wearbifocals, you're prone to falls it.
If you're used to charging through lifeand you go fast, you're gonna fall.
(39:05):
It's all these little parts and you don'twanna fall because that will set you back.
So be strong or make sure you're, youhave some level of fitness 'cause that'll
help you get off the floor if you fall.
Um.
Yeah.
And as we age, veryoften we don't hydrate.
(39:26):
That's, that's, that's a toughone to kind of make that habit,
but make sure you're hydrated.
Yeah.
Drink whatever fluid you can,but just make sure you hydrate.
Um, there's, they're basic thingsand I guess the other one is sleep.
Um, sleep can be challenging.
You age, uh, there are issues ofsleep apnea and, and what those
(39:48):
are, but take care of those things.
'cause sleep is essential.
It's where your body rechargesso it basic things, but you can
get overwhelmed and not do them.
So maybe we can, as acommunity, help help each other.
Stay on a healthy path.
(40:09):
Yeah, yeah, absolutely.
I love, you know, help each otherand hold each other to that.
But yeah, I read when I was probably,I dunno, I wanna say like 18.
Sheri Colberg wrote a book.
It was like 50 Secrets of the LongestLiving People with Type one Diabetes,
and I found it to be very inspiring.
(40:31):
Some of the stuff now is, you know, it's,it's an older book now, but I think the
overall message is still so important fromwhat you get out of it because that's,
that's pretty much what the book says.
These people have stayed active andmade physical activity such a, like
(40:51):
given it such a spotlight in their life.
So definitely.
Make it as simple as possible.
Reward yourself.
If it isn't a thing you like to do,uh, find the things that you do.
Like these are, these are all the thingsthat are out there and you hear them.
Um, how do you makethem part of your life?
(41:12):
How do you actually do it?
Yeah, yeah.
Actually put it on your, on your calendar.
And if you don't, keep a calendar, keepa calendar and, and you know, I, I write
in the days I have Pilates class and Iwrite in days when I have activities.
Um.
Mm-hmm.
This is all the smart things.
It's not whether you have diabetes or not.
These are just the smart things,but particularly for your cognition
(41:36):
and your wellbeing with diabetes,because you do take care of yourself.
I told the group last night, anyone herewho's lived with this disease over 50
years, you've done something really well.
You've really.
You know how to organize yourself.
You know how to pay attention.
You know how to live in realityand take your medication.
(41:58):
So kudos you, you did a great job.
And just keep doing that andfeel good that you actually have
those skills that got you to 50years, and that was no easy feat.
It's like these little celebrations.
These little milestones that you reach.
Yeah.
Appreciate yourself for that.
(42:18):
Absolutely.
Mm-hmm.
Yeah.
I love that they give those,you know, like those little
coins, those milestone coins.
Um, I know Friends for Life does it.
I think there's some otherplaces that give them out too.
Joslin does.
Um, I have them all, um.
Yeah, right.
I look at mine like,yeah, that's a long time.
(42:39):
Joslin used to give a goldwatch when you hit 50 years.
And I was so looking forward to that.
I go to Joslyn in Boston.
Every Christmas I would go thereto readjust my insulin needs.
And I, it was a hard time asa teenager, but it was smart.
Um, but when I got to 50 years, I,oh, I'm gonna get my gold watch!
(43:01):
And they stopped giving goldwatches because so many of
us were living that long.
I thought wait, wait.
That was wrong!
How 'bout my watch?
And so then they giveyou a brass medallion.
It's not a gold watch, but it's not.
Yeah.
That's not, still not the same.
That's, yeah.
You, you need that gold.
(43:22):
You need a gold watch.
You do, you have, youcertainly earned a gold watch.
I think we need to make that happen again.
And gotta get, gottaget you that gold Watch.
My husband, he actually boughtme a vintage, um space Watch
that was created in the year thatI was diagnosed with diabetes.
(43:42):
It was a 1965 watch, so it's avintage watch, um, for my 50 year
because he goes, okay, you didn'tget your gold watch, but here you go.
Oh my God, that is amazing.
You have to celebrate andrealize how well you've done.
Days are not easy and there are otherthings that are really not easy, um,
(44:04):
that you get through them is remarkable.
I also think a lot of how we'vedone so well is because we
do pay attention to exercise.
We do pay attention to food.
It, it's been something that'sbeen drummed into so many of us.
So I wonder if I didn't have type onediabetes, um, would I be overweight?
(44:26):
Would I uh, uh, see, I see my family,who, who don't have T1D and I'm healthy.
It's a reminder.
Um, and that you're doingit again, celebrate that.
It's,
I remember like growing upon cosmic brownies and-- Oof.
So yeah, learning about the food.
Never, I don't, I don't know that itever would've happened without T1D.
(44:48):
And sometimes we'll go get a sandwich andhe'll come back from buying the sandwich
and I'll have a candy bar and I'll starteating the candy bar before lunch and go,
I don't understand why you're doing that.
That's No, no, no, no.
Mm-hmm.
And he goes, well, I like it.
And, and we're, we maybe have a littlemore control on that, and we will,
(45:08):
I'll have a bite after lunch, butfirst I'll eat, okay, fried food.
So I said, you just don'thave diabetes now do you?
You're just... he said, "WellI was hungry." I understand.
Most of us did learn somereally good health habits.
Mm-hmm.
Because type one diabetes, so.
Mm-hmm.
Yep.
(45:28):
And I'm definitely grateful for that.
Portion size.
Um, I learned that, um, at JoslinClinic and I mean, it was so detailed
that they would cut off pieces,like parts of a piece of bread so
you have the right number of grams.
I went, well, that's a littleextreme, but some people did that.
Um, but understanding portion size andconsistency and, and a lot went into what
(45:53):
got us here this many years down the line.
Mm-hmm.
You also learn long term youcan do everything right and
not get the result you expect.
This disease is capricious.
It is un unexpected.
Rude.
Unreliable.
You, things happen.
(46:13):
I watched a little video reel of alittle girl saying, it's not perfect,
but you can be as good as possible.
You can do the best you can.
And, um, it's an understandingthat it's not, you are not
gonna be perfect every day.
This disease doesn't let that happen.
Mm-hmm.
Uh, and yet you can keep going.
So it's, it's just that awareness.
(46:35):
Yeah.
Yeah.
Absolutely.
And I love that a littlegirl was saying it.
Yeah.
It's just that reminder that thisdisease doesn't let you be perfect.
Right.
Uh, it just doesn't, lifedoesn't let you be perfect.
So, um, the disease disease
just follows that, that path and.
It sure does.
You do everything rightand everything goes wrong.
(46:57):
Mm-hmm.
And, and there are days, there aredays where you can explain it and, and
you don't, try not to beat yourselfup and you try to get back on track.
Um, and you give yourself somegrace on that period of time.
Mm-hmm.
Yeah.
Yeah, absolutely.
Giving yourself the grace.
It's just such a good way to sayit, but it's what we have to do.
(47:19):
We have to give ourself grace.
And maybe humor.
It is all, if you were sitting a hundredfeet above watching everyone on earth
doing all these things and getting allstressed, you'd say, oh, calm down.
It'll all work out.
Some, some perspective of it,it'll work out or it won't.
(47:41):
But stressing on it doesn'tbring it any easier.
Making it easier.
Yeah.
It doesn't change it either.
You know, getting, getting upsetif anything is just gonna make it
worse because you got some stress.
Yeah.
It'll just like, you need more insulin.
Yeah.
Yeah.
I think, I don't, I love, like, Ilove the pages where they use humor to
(48:04):
kind of cope with type one diabetes.
So that's, that's kind ofmy, that's my type of people.
That's what I like to use.
So, it's sometimes a littledark humor, but it works.
So yeah, it's just makes everything,I don't know, humor makes everything
a little bit easier to, to manage.
It does.
And I think you bring it back tojust, community sometimes helps
(48:26):
you see the humor and when you justare so deep into, this is horrible.
Absolutely.
Giggle is, yeah but, you know,from the other side, it's kind
of... so it's helpful to haveother perspectives sometimes.
Yeah.
And you, I have to say, arejust so absolutely incredible
(48:46):
at getting a community together.
I know you have a Facebookpage for T1D to 100.
The Loop and Learn community is just, ofcourse, I've been a part of that for a
long time, but it's just, it's so amazing.
It's like, you did that.
Like, it's just so, I can't waitto see what the community becomes
for, you know, the T1D to 100.
(49:07):
I just see it grow, growing.
We've been up for three weeks.
Uh, the Facebook group is, is growing.
It's going, it's, it'sfaster than I anticipated.
Um.
We're touching a nerve of peoplewho are saying, yeah, you're right,
I don't know what to do as I age.
I need help.
And, um, people are just comingout saying, how do I help?
(49:30):
How do I get involved?
Um.
Mm-hmm.
And we're looking at a, a groupthat focuses on advocacy because we
do need to help organizations andhospitals understand what we need.
We need nursing schools tounderstand what we need.
Um, all of this is advocacy.
We need some pressure on, um, fundraisingorganizations to acknowledge that
(49:52):
we are a large group of people.
Um, most of the large groups thatdo fundraising don't focus on aging.
Um.
Right.
We're not as cute on the,as as poster children I see.
You're absolutely adorable.
So I can't agree with, Idisagree with that one.
But it, it, it's, we're just not thecute little ones that they parade out.
(50:17):
And maybe they should haveus all come out with walkers.
I don't know.
We, we need a, a place at thetable in, in congressional, um,
pressure and, um, making changes,otherwise changes will be made and
we don't have a seat at the table.
So it's, we are pulling togetheran advocacy effort, trying to get
the voice loud enough to say, payattention to this demographic.
(50:40):
We're not huge.
We are not type twos.
And even they require that advocacy.
So part of those thingswe're trying to do as well.
Type one, is so incredibly unique.
And right now there is not nearlyenough taught in school about it.
(51:00):
So it's like, it either needs to startgetting taught so that people can be
better cared for, or we need to come upwith a way that we can get those people
that were parents of a type one to beable to go in and, and help people.
Some kind of easier path thanbecoming, you know, this,
(51:23):
getting these certificationsor whatever's necessary now.
Yeah.
And certifications would absolutely help.
It, it was, would kind of regulatethe knowledge base, um, so everyone's
kind of on the same page and itwould've reduced the liability.
People are there, thepeople have the knowledge.
With more and more people aging intothis category, the help will be needed.
(51:47):
The there, there has tobe a change in the system.
So we advocate for the change.
Hopefully we can get into thenursing schools so that they
teach the proper information.
A lot is still being misinformed.
Yes.
So it's education.
It's community.
Again, it's having a voice andsharing that and it's our goal.
(52:13):
I kind of have three-pronged ofapproach, which, which is help the T1D.
That's my primary, youknow, help my people age.
Mm-hmm.
Greatly and as happily as possible.
Then interact with the researchcommunity who will validate our concerns.
They'll study it.
They'll say, what are you concerned about?
(52:33):
Um, I'm speaking at a conference,uh, next week, uh, at Harvard Joslin,
and, and my husband is as well,because he is the caregiver of a T1D.
So let's get the voiceof what our needs are.
Let them research it, validate it, andlet's take that into the healthcare
community and say, this is the reality.
(52:54):
This is how you need topractice the medicine.
This is how you, to provide care.
So it's, it's a kind of athree-prong approach and, um, that,
that's our goal is to be loud.
It's so good.
Like, thank you, so much for havingsuch a great voice that you're
willing to travel to these placesand give these talks and create these
(53:20):
sites and, uh, make the difference.
We're all the experts.
We are the experts.
We, you, you can't live with something24/7 every single second and not come
away with some expertise and thatwe can share it and that someone's
willing to listen and make changes.
Mm-hmm.
For us is really pretty essentialso that we deserve to be safe.
(53:44):
We deserve to be taken care of as we need.
And, um, we have to helpthose who are gonna do that
understand what those needs are.
Absolutely.
If they don't know, we'll help 'em.
I, I, I mentioned in mytalk to ADCES, just ask us.
Ask anybody who's lived withthis disease for a while.
We'll talk to you.
(54:05):
We have a lot to say and we will helpyou understand what the needs are.
Mm-hmm.
So we, we welcome that opportunity.
Some great researchers out there.
Amazing people.
Yeah.
I'm really, I'm really, reallyglad that you're going to these
conferences and people are, people aredefinitely hearing you, so thank you.
Is there anything that youfeel like everyone with type
(54:28):
one diabetes should know?
If you could tell everybodyone thing, what would it be?
Top of my head?
Make a go bag.
I, I think it's kind of check your,how well you're coping with this
because it's so, so, so constant.
And
mm-hmm
keep on track.
It'll, it'll help youhappily make your go bag.
(54:49):
It will help you, um, stay level whenyou're talking to your care providers.
Uh, it just, this disease is hardand so how do we make it easier and,
and help each other stay connected.
Eat food you like periodicallythat isn't on your list.
You know, just be as happy aspossible and, um, but connect.
(55:11):
Absolutely connect.
That's great.
I love that.
So I think this is, this isonly the start and hopefully the
listeners today, um, feel inspired.
You know, with you're a parent, you know,your, your child's gonna grow up and not
have you one day, you know, get involved.
It's never too soon to get involved.
(55:33):
I think that sometimes we forgethow fast life can, can go by.
Be, be the difference.
It has to be-- you know, if, ifyou don't do it, who's going to?
Joanne's going to.
But we need to, you know, we needto come together and, and do it.
So hopefully we will, you know,people are gonna be inspired by you.
(55:54):
Well, thank you.
I just hope people set some attentionand say, yeah, we, we just need to
make it a little better for all of us.
We, we live in a chronic, crazy worldright now, and, and there's a lot of,
um mm-hmm, concern and unhappiness,but we can do something about this
stuff that affects us so, so directlyand others who need our help.
(56:14):
So reach out.
Be part of the community and come visitus and, and ask us what your questions.
We're on Facebook right now.
We're growing.
We're on Instagram.
I'm learning about socialmedia, um, also on LinkedIn.
So we're trying to get theword out that we're here.
And where do they find you?
Can you tell 'em what the, whatthe social media pages are called?
(56:37):
And also what's the website, URL?
We can link it in the, in thepodcast description as well.
They're, um, T1Dto100.com.
Put that in.
You'll find us.
Just so you know, um, doing our graphicsfor the website was real interesting,
uh, exercise in, what is the imageand the, um, essence of what we're
(57:00):
trying to convey to the community.
And it's that we're on this journey.
Everyone's on a journey.
It's their own journey.
And you can be, it's like a river andyou can understand it's gonna flow.
It's gonna take a lot of funny turns,and sometimes you'll have, um, running
streams and you'll have rocks in there.
And you are on your own journey.
(57:22):
Make that journey as smooth aspossible, as understandable.
And if you get thrown out of thecanoe, get back in the canoe or
whatever your way is of navigating.
How do we navigate this together andbe as safe as possible and, um, enjoy
the journey as much as possible?
That's the goal.
(57:42):
So we have this sense of a, of, of,kind of like a river, and that's
kind of our goal of we're all here.
We're all doing this.
Let's, let's do it as well as we can.
Yeah.
And that's like the perfect imageryof everything you just said.
Like, I mean, what a great quoteand image to, to give to everything.
And the website is beautiful.
(58:03):
It is very nicely done.
So.
That was a, that was a project ofpassion to figure this one out.
Um, thank you.
That people feel safe in it and, um, andenjoy what they're reading and learn.
Yeah.
Well, I really enjoyed,uh, this conversation.
It's always such a pleasure to talkto you, get to, to hear about what
(58:24):
you're doing and, um, you know, youare, you're truly incredible and
just greatly appreciate your time.
Perfect.
And thank you so much forwhat you do in our community.
So.
It's wonderful.
Thank you.
Thank you, thank you.
Well, um, and thank you to our listenersfor joining us today on the Think Like
a Pancreas--The Podcast, and we willlink Joanne, the T1D to 100, uh, all
(58:50):
the social media platforms and we'lllink the website in the description.
So make sure, if you haven't seen those,check 'em out, join the social media
pages and you know, come on, engage.
Um, Joanne's gonna be verywelcoming on, on those platforms.
So thanks again for listeningand we'll catch you next time.
Thanks everyone.
(59:11):
Thanks for tuning in to ThinkLike a Pancreas--The Podcast.
If you enjoyed today's episode, don'tforget to like, follow or subscribe
on your favorite podcast app.
Think like a Pancreas--ThePodcast is brought to you by
Integrated Diabetes Services.
Where experience meets expertise, passionmeets compassion, and diabetes care
(59:32):
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.
In glucose management, the self-carestrategies, the latest tech,
sports, and exercise, weight loss,type one pregnancy, and emotional
(59:52):
wellbeing, we've got you covered.
We offer consultations inEnglish and Spanish via phone,
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Visit integrateddiabetes.com oremail info@integrateddiabetes.com
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On behalf of Think Like a Pancreas--ThePodcast, I'm Gary Scheiner,
(01:00:14):
wishing you a fantastic week ahead.
And don't forget to think like a pancreas.