ACERCA DE ESTE EPISODIO
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 GUESTKathryn 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.
CHAPTERS00:14 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 MENTIONEDhttps://www.facebook.com/groups/t1dto100
https://www.instagram.com/t1dto100
https://www.linkedin.com/company/t1dto100
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 REVIEWIf you enjoyed this episode subscribe on Apple Podcasts, Spotify, or your favorite podcast platform to ensure that you never miss an episode.
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 THISThe Burden of Diabetes and Self-Advocacy
Diabetes, Nutrition, and Wellness with Jenny and Dana
Disclaimer
The information contained in this program is based on the experience and opinions of the Integrated Diabetes Services clinical team. Please discuss any changes to your treatment plan with your personal healthcare provider before implementing.
MOSTRAR NOTAS 🔗
TRANSCRIPCIÓN 🔗
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Welcome to Think Like a Pancreas--The
Podcast where our goal is to keep
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you informed, inspired, and a little
entertained on all things diabetes.
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The information contained in this
program is based on the experience
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and opinions of the Integrated
Diabetes Services clinical team.
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Please discuss any changes to your
treatment plan with your personal
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healthcare provider before implementing.
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Hey everyone.
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Welcome back to Think like
a Pancreas--The Podcast.
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Today we're gonna be talking about
something that does not get nearly enough
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attention, and this is what it looks like
to grow older with Type one Diabetes.
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My guest is Joanne Milo, who has
lived with T1D for 60 years and just
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launched a brand new project called
T1D to 100, which is a resource website
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for people aiming to thrive with type
one diabetes in every decade of life.
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Joanne is also known for her
long running blog, the Savvy
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Diabetic, and helping to build the
amazing loop and learn community.
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Joanne, welcome.
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It is so good to have you.
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Thank you, Catherine.
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It's, it's great to be here with you.
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It's always wonderful.
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Yeah, you're just so incredible.
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So, um, and just one of my favorite
people and just so glad that diabetes
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brought me to you and to be able to
get to know you because of this, this
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thing we have to deal with every day.
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Is there anything that really sparked
your desire to create this website?
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Yeah, it's, um, well, the way I look at
all of this is everybody's on a journey.
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We're, we're born.
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We live our lives.
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Mm-hmm.
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And then we kind, there's
an end game and then we die.
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I mean, it's, it's just a reality.
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And if you're doing that with T1D,
it's just that much more complicated.
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And, um, I, I think I was maybe in my
sixties and started to have some medical
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issues or surgeries and started to get
a little concerned that... I looked at
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the end and looked at my, my husband
and thought, I don't have children.
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Who's there for me?
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What am I gonna do?
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And, and I talked to a lot of people and
I started to hear older people getting
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frightened of-- they're frightened alone.
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They're frightened of what's going to
happen, who's gonna take care of me?
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And I started to look at that
and thought, there are no answer.
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There's no, nobody's talking about this.
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Mm-hmm.
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Uh, I told a group of friends,
long-term T1Ds, to my dining room
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table, and we sat around about 10
of us saying, what are the issues?
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What are we concerned about?
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What do we think we need help with?
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And came up with a list.
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I chatted with Bill Polanski and Paul
Madden on a Zoom and said, I, I, I really
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think we need to pay attention to this.
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Bill said to me, well, what's the problem?
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You're living longer Isn't
that just wonderful?
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And the answer is yes, of course.
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We're very grateful.
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It's technology that's let us live longer.
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But the reality is nobody knows what
to do with us and no one knows how to
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comprehensively take care of us and
make sure we are safe till end of life.
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And became real clear to Bill and to Paul.
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This is an issue and
nobody's dealing with it.
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No one's looking at it, no one's setting
up safeguards and, and systems that will
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work for us, and very little research.
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And so I thought, we need to do that
and we need to educate ourselves
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because I've learned over 60 years,
we have to advocate for ourselves.
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There aren't that many T1Ds total.
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There are more, there are more
T2Ds, there are more people.
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We have to take care of
ourselves first and foremost.
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And, and I'm used to advocating
and I'm used to being a loud voice
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and say, there's a problem here.
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Um, so we met several times and
we made a list of things that
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we thought were major issues.
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I just started putting it together,
saying, what do we do with this?
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What, how do we get attention?
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How do we, uh, get the research
community lined up with us?
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And so I've connected very, very
well with research community.
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And then on a visit to my endo
on a day, there were just issues.
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And he said, how are you doing?
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I said, I, I'm, I'm tired of this.
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I'm just overwhelmed and tired of it.
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And he said, no, not you.
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And I said, yeah, um, I am struggling.
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And he said, I'm sorry to hear that.
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And then the appointment went on.
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It wasn't even addressed yet.
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I was taking calls from
people going, I'm scared.
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What do I do?
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And I thought, we, we need to address it.
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So, um, that was the beginning
of the decision that we
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need to get out information.
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It's knowledge that helps us plan and
at least not get caught by surprise.
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Truly informational.
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Share the information.
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Connect to the research community,
and then educate caregivers who
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really don't know what to do with us.
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And as an aside, I think
they'd rather not deal with us.
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Um.
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Yeah.
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We're not as, as 10 year olds and we have
far more problems, um, complications,
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issues, uh, comorbidities, and, um, we
are complicated and we take more time
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and it, it piles up and it gets worse.
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So it's like how do we
prepare for that future?
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It seems like so many providers just
have thought of type one diabetes, of
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this juvenile disease, and for so long,
just it seems like they forget that
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people with type one diabetes get old.
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And oftentimes people with type one
diabetes are diagnosed later in life.
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I mean, the amount of people I've
met that weren't even diagnosed
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until they were in their sixties
is... Truly, it's blown my mind.
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I never even realized until I
started meeting so many people.
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Well, I, I was diagnosed in 1965 and at
that time, most of us we were told we
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would not live past age 40 and, and I'm
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terrible.
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71. So that, that number
has gone by the wayside.
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But we weren't expected to be here.
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A lot of women were told not to
have children, um, because of
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the stress and the difficulties.
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Without the technology that just
wasn't even thought of at the time.
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Mm-hmm.
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Um, so we got a lot of
ages who are careless.
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They have no next generation.
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Yeah.
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We are living longer.
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There are way more being
diagnosed as adults.
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And actually, I think the statistics
I recently heard through, uh,
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Breakthrough T1D, there are
more adult T1Ds than children.
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Yes.
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So we've, we've tipped the
scales and the over 60 crowd
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is a fast growing demographic.
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We're still here.
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Mm-hmm.
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And, but nothing is really prepared
for us coming on in such large numbers.
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Yeah.
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Yeah.
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It seems the only way where they've really
paid attention to the adult population
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is with a lot of the technology.
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I mean, majority of the things we use
work better in adults than they do in
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children, but kind of beyond that point,
it's, it's just like a forgotten age.
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So in coming together with the
group in your dining room table,
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what were these ideas that
flourished as you guys discussed?
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Uh, we were furiously taking notes and
it, it boils down to, there were a lot
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parts to it, uh, but it's basically,
um, who's gonna take care of me?
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How do I get prepared, prepared for
emergencies, falls, all the things
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that change of your living situations?
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Where am I gonna live and how?
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What does that look like?
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What's gonna happen to my body?
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And the more I hear it, the more things
are blamed on T1D and long term T1D.
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Doctors aren't always screening for
there, there are lots of issues.
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How do I keep coping?
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Um, as you age, as anyone
ages things happen to you.
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You know, you get conditions.
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You get new diseases.
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You have falls.
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And how do you keep
bouncing back emotionally?
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Uh, as you age, as
anyone ages there's loss.
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You lose your driver's license.
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You lose your ability maybe to
live alone or cognitively you
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lose your, your grasp on things.
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And how do we, we're trained
to control our diabetes.
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That's the big word, is control.
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How do you do, if you're getting tired,
you're cognitively a little bit off,
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you miss a step when you're doing
your, your insulin infusion changes?
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That's all real frightening.
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And then what happens if you're
support network isn't there anymore?
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Partners die.
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Um.
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Yeah.
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Children don't support aging parents
and the technology is confusing.
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And then you have systems, you have
healthcare and hospital systems
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that really are just beginning to
understand, don't pull devices off of
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people when you're in the hospital.
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You know, listen to the patient.
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But that's not everywhere.
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And, um, so we're saying don't pull
devices, you know, work with whoever's
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taking care of you in the hospital.
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Mm-hmm.
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Let them know that it is type one
diabetes, not type two diabetes.
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I, I've had several hospitalizations
and surgeries and I finally said,
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I think we should have a wristband.
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A paper wristband like they
give you in the hospital.
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Um
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mm-hmm.
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Say fall risk or allergic to penicillin.
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I wanted one that said
T1D or Type one Diabetes.
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Yeah.
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And asked to look at the hospital and
they said it would take five years to get
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through compliance to order wristbands,
so I ordered 500 of them for $75.
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Had 'em printed.
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Anytime I go to the hospital, I put it on.
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I share it with anyone
who wants one of them.
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It's easy, easy to do.
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And the last time I was in the hospital,
I was in pre-op and I said, excuse me,
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do you mind if I put on my wristband?
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And they said, you don't need that.
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We, we understand.
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And then they went through their
questions and they said, I see
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you have type one diabetes.
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And I said, yes.
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And they said, do you need insulin?
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And I thought, they don't understand.
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That's what the wrist band is for because
if, if you can't speak, you can hold up
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your wrist and say, Hey, look at this.
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This is important.
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Yeah.
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So it's all these safeguards and
tricks and tips that we can share in
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our community just to make us safer.
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Mm-hmm.
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Um, then there's stories,
people's stories.
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00:11:36,060 --> 00:11:39,689
We wanna know how people do
what they do as they're aging.
208
00:11:39,750 --> 00:11:46,500
One lady I was talking with and she was
living a lovely life and suddenly her
209
00:11:46,500 --> 00:11:51,360
husband had a stroke and died and she
said, I always thought I'd go first.
210
00:11:51,780 --> 00:11:53,699
I think that's what we don't plan.
211
00:11:53,699 --> 00:11:55,530
Our caregiver will be there.
212
00:11:55,530 --> 00:11:56,520
We'll outlive him.
213
00:11:57,150 --> 00:11:57,329
Yeah.
214
00:11:57,329 --> 00:12:01,829
And its not a guarentee and her,
we've written about her journey.
215
00:12:01,829 --> 00:12:06,060
We interviewed her and she's
the epitome of, one of the
216
00:12:06,060 --> 00:12:08,310
fears we have is, what happens?
217
00:12:08,310 --> 00:12:10,020
And how suddenly does it happen?
218
00:12:10,740 --> 00:12:12,209
And how can you be aware?
219
00:12:13,230 --> 00:12:16,110
She didn't know how, what the passwords
were to get into the computer.
220
00:12:16,170 --> 00:12:20,820
She didn't know-- he did the finances
and we interviewed her and that
221
00:12:20,820 --> 00:12:25,110
night, both of us who interviewed
her couldn't sleep going, uhoh.
222
00:12:26,190 --> 00:12:26,430
Yeah.
223
00:12:26,460 --> 00:12:29,130
We better prepared for this.
224
00:12:29,580 --> 00:12:32,880
You don't want these things, but
they do happen and they will happen.
225
00:12:33,060 --> 00:12:39,810
So everything we can do to share that and
help people be resilient in this journey
226
00:12:40,410 --> 00:12:43,260
seems just essential at this point for us.
227
00:12:43,410 --> 00:12:44,580
Yeah, absolutely.
228
00:12:45,240 --> 00:12:50,160
And it really is like-- going into
assisted care, having that plan in
229
00:12:50,160 --> 00:12:52,710
place makes such a big difference.
230
00:12:52,710 --> 00:12:57,480
Like it's not fair to go in and, and
have to give up what you've been using
231
00:12:57,480 --> 00:13:03,600
for years because they'll only allow
you to do MDI or um, take over that
232
00:13:03,600 --> 00:13:07,230
control of, of how you want to navigate.
233
00:13:07,860 --> 00:13:09,330
Oh, put you on a sliding scale.
234
00:13:09,330 --> 00:13:09,990
Oh my gosh.
235
00:13:10,455 --> 00:13:14,865
I learned a lot about options for
living if you aren't able to stay
236
00:13:14,865 --> 00:13:16,635
in your home or you don't want to,
237
00:13:16,635 --> 00:13:16,725
mm-hmm.
238
00:13:16,965 --> 00:13:22,005
Some places have a huge surcharge
on type one diabetes patients.
239
00:13:22,635 --> 00:13:27,765
Um, they don't want them,
if they do, it costs more.
240
00:13:27,855 --> 00:13:32,085
I, I heard someone gets,
gets charged per injection.
241
00:13:33,015 --> 00:13:36,285
Um, I've heard others where
they don't have night staff that
242
00:13:36,495 --> 00:13:41,415
is authorized or certified to
deal with a type one diabetic.
243
00:13:41,415 --> 00:13:44,625
So if you say, I have low blood
sugar, they call the paramedics
244
00:13:44,625 --> 00:13:46,005
instead of giving you some juice.
245
00:13:46,335 --> 00:13:48,045
It's an education process.
246
00:13:48,105 --> 00:13:50,115
It's a change of the system.
247
00:13:50,235 --> 00:13:56,865
And it's also critical that we have
allied health providers who are
248
00:13:56,955 --> 00:14:01,365
knowledgeable about this disease and
can understand the devices and help us.
249
00:14:01,905 --> 00:14:01,995
Mm-hmm.
250
00:14:02,235 --> 00:14:08,805
Um, we, we will need help and there's
a real lack of prepared people.
251
00:14:09,600 --> 00:14:12,510
And, and the issues of
liability if I touch a pump.
252
00:14:12,510 --> 00:14:16,140
So how do we make sure
we're safe as we age?
253
00:14:16,290 --> 00:14:16,830
Yeah.
254
00:14:16,920 --> 00:14:24,600
It's such a big thing that the website is,
I mean, that's a huge start, but we have
255
00:14:24,600 --> 00:14:29,850
to get that to these healthcare providers
'cause they need to make a change.
256
00:14:29,850 --> 00:14:35,340
We can be super prepared, but if
we grow old, we lose our family
257
00:14:35,340 --> 00:14:40,140
members, even if we have a plan and
they're not willing to follow it,
258
00:14:40,590 --> 00:14:42,000
you know, what, what are we gonna do?
259
00:14:43,140 --> 00:14:47,250
Parents whose kids had, they, they
took care of the kids as type ones, as
260
00:14:47,580 --> 00:14:51,930
children, and they needed to be taken
care of, and then the kid goes to college.
261
00:14:52,020 --> 00:14:56,300
This parent with all this knowledge
is kind of put out to pasture.
262
00:14:56,640 --> 00:14:58,140
Their knowledge is not being used.
263
00:14:58,140 --> 00:15:04,470
How do we use those people to be, provide
support for an elderly person who can't
264
00:15:04,470 --> 00:15:06,660
quite remember how to put on a CGM?
265
00:15:06,900 --> 00:15:07,290
Yeah.
266
00:15:07,530 --> 00:15:10,260
And even sit there and step it through.
267
00:15:10,380 --> 00:15:15,660
And even if these people weren't
like, you know, licensed providers,
268
00:15:15,720 --> 00:15:17,400
how can we get them to help?
269
00:15:17,400 --> 00:15:20,790
I see how that could make such a big
difference because of course they know
270
00:15:20,790 --> 00:15:29,670
how to insert a CGM and um, yeah, they
would be excellent to join the team of,
271
00:15:29,940 --> 00:15:32,370
you know, these facilities right there.
272
00:15:32,370 --> 00:15:39,735
Not enough and certainly not enough allied
professionals that we, we need more help.
273
00:15:39,795 --> 00:15:43,665
And, and with this demographic
coming on so strong, it really
274
00:15:43,665 --> 00:15:48,344
needs attention because people will
not get the support they need and
275
00:15:48,344 --> 00:15:49,574
they'll end up in the hospital.
276
00:15:49,574 --> 00:15:54,615
And that's another burden of,
of cost and burdening the system
277
00:15:54,615 --> 00:15:55,814
that doesn't have to happen.
278
00:15:55,935 --> 00:15:56,295
Yeah.
279
00:15:56,505 --> 00:16:02,775
I wonder, did were any, did any ideas
come out of ADCS of like, what we could
280
00:16:02,835 --> 00:16:08,474
potentially do to better prepare like
our, you know, hospitals and long-term
281
00:16:08,474 --> 00:16:10,485
care facilities and places like that?
282
00:16:10,574 --> 00:16:12,165
Not, not yet.
283
00:16:12,300 --> 00:16:13,905
I, I, I think it's beginning.
284
00:16:13,905 --> 00:16:16,099
I was on a meeting last
night with my team.
285
00:16:16,560 --> 00:16:16,980
Mm-hmm.
286
00:16:18,435 --> 00:16:22,395
It was last night and this morning I
got an email from one member saying
287
00:16:22,605 --> 00:16:27,135
she spoke to another, uh, diabetes
educator and they're looking at
288
00:16:27,195 --> 00:16:29,235
how to provide that kind of care.
289
00:16:29,295 --> 00:16:34,365
So it's beginning and it's gonna come
from our community, and it's going to be
290
00:16:34,395 --> 00:16:39,105
to keep pushing the educators saying, you
have the skills that we're going to need.
291
00:16:39,825 --> 00:16:41,025
You can make money here.
292
00:16:41,685 --> 00:16:45,495
It's okay, you can get coverage,
but we're gonna need the help and
293
00:16:45,495 --> 00:16:46,995
we're gonna seriously need it.
294
00:16:47,115 --> 00:16:51,075
And people can do well on
their devices for a long time.
295
00:16:51,975 --> 00:16:56,775
Uh, but a lot of people are gonna need
some support and, and, and it gets,
296
00:16:57,885 --> 00:17:02,655
bringing back to the, what are some
of the issues as you physically age?
297
00:17:02,655 --> 00:17:08,295
Sometimes it's hard to open devices
and I've had difficulty opening CGM
298
00:17:08,295 --> 00:17:16,515
containers, um, I have arthritis and you
know, how do we make those things easier?
299
00:17:16,575 --> 00:17:16,965
Uh.
300
00:17:18,455 --> 00:17:21,630
The, the other issue that came up, and
I didn't understand it was an issue,
301
00:17:21,630 --> 00:17:24,570
but it is, is physical geography.
302
00:17:24,570 --> 00:17:27,150
Someone mentioned it in our
early meetings since, I don't
303
00:17:27,150 --> 00:17:28,260
know what you're talking about.
304
00:17:29,670 --> 00:17:34,500
We've been poking ourselves for
50, 60 years with needles and
305
00:17:34,500 --> 00:17:39,750
infusion sets, and we've been
the CGMs and our skin is damaged.
306
00:17:39,780 --> 00:17:41,130
Our skin gets sick.
307
00:17:41,460 --> 00:17:42,000
We age.
308
00:17:42,000 --> 00:17:43,560
We lose the fatty layer.
309
00:17:44,100 --> 00:17:46,470
Um, where do we stick the devices?
310
00:17:46,680 --> 00:17:51,690
And so we came up with a, an amazing
document called "Skin in the Game"
311
00:17:52,410 --> 00:17:57,510
of all the community input of things
they use that make it easier for your
312
00:17:57,510 --> 00:17:59,820
skin to handle all these devices.
313
00:18:00,300 --> 00:18:03,990
A local university and their
department of dermatology because
314
00:18:04,140 --> 00:18:06,270
the head of the department is a T1D,
315
00:18:06,575 --> 00:18:06,995
mm-hmm.
316
00:18:07,080 --> 00:18:11,970
And, um, he says, how do we validate
that this skin thing is a big thing?
317
00:18:12,210 --> 00:18:16,440
I'm running outta spaces, you know,
I've used that for so many years.
318
00:18:16,440 --> 00:18:22,004
So, um, it's just shedding the light
on the-- it's different now for us.
319
00:18:22,905 --> 00:18:28,575
Um, there's another area that we can touch
on briefly, but digestion and the way
320
00:18:28,575 --> 00:18:31,665
our bodies handle hypo and hyperglycemia.
321
00:18:32,145 --> 00:18:37,635
Lots of parts of this and we'll be
doing some seminars on it, but bringing
322
00:18:38,024 --> 00:18:42,315
your blood sugar up from low sometimes
doesn't work the way it used to.
323
00:18:42,885 --> 00:18:43,125
Right.
324
00:18:43,125 --> 00:18:47,835
Being that it doesn't work the way
it used to as we aged, let's get
325
00:18:47,835 --> 00:18:52,125
the knowledge out and the tools
that say, all right, it's changed.
326
00:18:52,155 --> 00:18:54,705
Here's the new way we do things.
327
00:18:54,764 --> 00:18:56,685
And just education.
328
00:18:57,585 --> 00:18:59,595
Yeah, and not even just digestion.
329
00:18:59,595 --> 00:19:02,475
Have you noticed changes
with insulin impact?
330
00:19:02,595 --> 00:19:03,045
Absolutely.
331
00:19:03,675 --> 00:19:03,945
Yeah.
332
00:19:05,310 --> 00:19:12,240
It's, it's your body is shifting and, and
changing and, uh, the liver's involved
333
00:19:12,240 --> 00:19:14,970
and, and your, your, your nervous system.
334
00:19:15,030 --> 00:19:21,840
So digestively, um, I did a, a, a
presentation a few years ago with, um,
335
00:19:21,899 --> 00:19:24,600
some experts at Stanford on digestion.
336
00:19:24,780 --> 00:19:27,330
And it's a tricky issue that
nobody wants to talk to.
337
00:19:27,330 --> 00:19:28,050
Mm-hmm.
338
00:19:28,215 --> 00:19:28,710
And talk about.
339
00:19:29,520 --> 00:19:30,300
It's unpleasant.
340
00:19:30,480 --> 00:19:31,260
It's important.
341
00:19:31,260 --> 00:19:35,399
And probably 50% of long-term T1Ds
are dealing with gastric issues.
342
00:19:35,909 --> 00:19:36,210
Yeah.
343
00:19:37,020 --> 00:19:38,370
We don't wanna talk about it.
344
00:19:38,490 --> 00:19:43,860
Um, neuropathies are things we'd
rather deny, but they are real.
345
00:19:44,610 --> 00:19:50,879
And particularly this first wave of
aging, T1Ds didn't have the benefit
346
00:19:50,879 --> 00:19:54,540
of better control, better technology.
347
00:19:55,110 --> 00:19:55,200
Mm-hmm.
348
00:19:55,440 --> 00:20:02,220
So maybe subject, beside the disease,
to have more issues of complications.
349
00:20:03,659 --> 00:20:04,169
So is
350
00:20:04,169 --> 00:20:05,699
it's a, how do you handle it?
351
00:20:06,510 --> 00:20:07,199
Yeah, yeah.
352
00:20:07,230 --> 00:20:13,199
Complications in general are just so
hard to talk about and it certainly makes
353
00:20:13,199 --> 00:20:21,149
people feel ashamed or embarrassed or, you
know, there's just so many words and yeah,
354
00:20:21,149 --> 00:20:22,980
they don't want, wanna talk about it.
355
00:20:24,000 --> 00:20:24,720
Just, yeah.
356
00:20:25,260 --> 00:20:26,040
I don't wanna go there.
357
00:20:26,040 --> 00:20:28,320
I don't, I don't wanna involve my spouse.
358
00:20:28,435 --> 00:20:28,675
I know.
359
00:20:28,794 --> 00:20:30,449
I just, I don't wanna talk about it.
360
00:20:30,449 --> 00:20:32,879
Which, which is totally understandable.
361
00:20:32,879 --> 00:20:32,939
Yeah.
362
00:20:32,969 --> 00:20:37,050
Um, I had that discussion this
morning with my husband because I, we
363
00:20:37,050 --> 00:20:39,870
talked last night and he said, it's
the first time I really understood
364
00:20:40,439 --> 00:20:41,850
an issue, that I was having.
365
00:20:41,850 --> 00:20:43,860
And I said, I don't like to talk about it.
366
00:20:44,070 --> 00:20:46,919
I just, I don't wanna
sound like complaining.
367
00:20:46,980 --> 00:20:48,300
I, but it's real.
368
00:20:48,300 --> 00:20:50,399
And I'd rather not say
those words out loud.
369
00:20:50,730 --> 00:20:51,120
Um,
370
00:20:51,419 --> 00:20:51,540
Yeah.
371
00:20:51,540 --> 00:20:52,169
But they exist.
372
00:20:52,379 --> 00:20:57,689
So maybe if we can share on a website
or uh, a Facebook group where people
373
00:20:57,689 --> 00:20:59,550
can actually feel safe to talk.
374
00:20:59,550 --> 00:20:59,610
Yeah.
375
00:21:00,750 --> 00:21:05,760
It'll help us understand and,
and get some solutions that, that
376
00:21:06,195 --> 00:21:09,225
make it a little bit easier and
feel like part of the community.
377
00:21:09,465 --> 00:21:09,735
Yeah.
378
00:21:10,005 --> 00:21:14,955
I think everything, for most people,
everyone is different, but for most
379
00:21:14,955 --> 00:21:19,875
people to feel like they're not alone,
they have support, they have the ability
380
00:21:19,875 --> 00:21:23,445
to find a community going through
the same things as them means such...
381
00:21:24,045 --> 00:21:28,215
that is probably the biggest thing that
has come out of this, and it's not new
382
00:21:28,455 --> 00:21:32,025
is, is community and social interaction.
383
00:21:32,025 --> 00:21:38,065
I, we just published, um, uh, a
news article about like super agers.
384
00:21:38,225 --> 00:21:42,795
The people that live long and they
have studied super agers and it isn't
385
00:21:42,795 --> 00:21:44,565
what they eat, it isn't what they do.
386
00:21:44,715 --> 00:21:47,505
It's their connection to community.
387
00:21:47,925 --> 00:21:52,155
That is their central
point is stay involved.
388
00:21:52,155 --> 00:21:53,115
Stay connected.
389
00:21:53,295 --> 00:21:57,045
Even if you're an introvert,
stay part of a community.
390
00:21:57,705 --> 00:22:02,800
You benefit so much that
it becomes essential.
391
00:22:02,800 --> 00:22:06,960
So we're, we just put, put
out a, um, document on how to
392
00:22:06,960 --> 00:22:08,250
start your own support group.
393
00:22:08,340 --> 00:22:09,950
How do you find a dia buddy?
394
00:22:10,500 --> 00:22:12,639
How do you reach out?
395
00:22:12,970 --> 00:22:18,750
Um, I, I met somebody who, uh, at
the age of 60 had never met another
396
00:22:18,750 --> 00:22:25,620
T1D, and we invited him to just a, a
little, uh, coffee group that we had.
397
00:22:25,710 --> 00:22:30,929
And he sat there with eyes wide open
going, oh my gosh, you guys understand?
398
00:22:31,590 --> 00:22:35,730
Um, and he's the one that came
up with the name T!D to 100.
399
00:22:36,419 --> 00:22:39,689
He said, do you know, I think
maybe I can live longer.
400
00:22:40,020 --> 00:22:44,340
And it, it was this awareness
that, I'm not alone.
401
00:22:44,730 --> 00:22:44,790
Yeah.
402
00:22:44,790 --> 00:22:50,010
It's a very lonely journey because
everyone's diabetes is different
403
00:22:50,010 --> 00:22:52,409
and unique, but you don't have to.
404
00:22:53,535 --> 00:22:54,875
You don't have to do it alone.
405
00:22:55,325 --> 00:23:01,455
And, and so we're really pushing
the concept of connect in any way.
406
00:23:01,460 --> 00:23:04,845
We, we have the resources of the
communities that are open for
407
00:23:05,025 --> 00:23:07,755
groups and group walks or gathering.
408
00:23:07,755 --> 00:23:07,965
So...
409
00:23:07,965 --> 00:23:12,675
How do we keep people connected
when they get to 80, 90, 100?
410
00:23:12,735 --> 00:23:17,535
Kind of when they're at that point that
they can't get out so much anymore.
411
00:23:18,135 --> 00:23:18,375
Yeah.
412
00:23:18,555 --> 00:23:20,445
Well, thank goodness for Zoom.
413
00:23:20,445 --> 00:23:20,505
Yeah.
414
00:23:20,625 --> 00:23:27,245
Um, there are several Zoom events
that are so warm and welcoming.
415
00:23:27,245 --> 00:23:30,495
A discussion yesterday on how
do you keep them positive?
416
00:23:30,795 --> 00:23:36,645
Because everyone, very often people
like to talk about the dramatic events
417
00:23:36,645 --> 00:23:41,475
that happen or the, the injustice
and, and things that don't go well.
418
00:23:41,475 --> 00:23:47,850
And, and that has a place uh in a group,
there's a sense that you can be uplifted
419
00:23:47,850 --> 00:23:51,900
in a way and at least not feel so alone.
420
00:23:51,900 --> 00:23:54,900
It's like you come away,
go, yeah, I get that.
421
00:23:54,900 --> 00:23:56,190
They understand me.
422
00:23:56,850 --> 00:23:56,940
Mm-hmm.
423
00:23:57,360 --> 00:24:02,550
Um, so it, it's interesting, as you get
into your eighties, you are more isolated.
424
00:24:02,730 --> 00:24:02,820
Mm-hmm.
425
00:24:03,060 --> 00:24:06,450
Um, that's something we're gonna
have to address is, how do we
426
00:24:06,630 --> 00:24:08,760
reach into those people as well?
427
00:24:09,180 --> 00:24:14,250
Um, social media helps and, and
I'm seeing groups with, you know,
428
00:24:14,250 --> 00:24:20,340
50 years plus and, and they,
people join and go, Hey, I'm here.
429
00:24:20,790 --> 00:24:25,680
And it's, it's a, it's a whole interesting
awareness of, I have somebody to
430
00:24:25,680 --> 00:24:28,230
talk to and listen to and be part of.
431
00:24:28,920 --> 00:24:31,440
So it's, it's so, so essential.
432
00:24:31,950 --> 00:24:37,530
Not just diabetes, but, um,
to live well is connection.
433
00:24:37,740 --> 00:24:42,660
And particularly with this disease,
which is so, so, so hard, uh, uh,
434
00:24:43,530 --> 00:24:49,665
people live well with this, but I always
say, it is a tough, tough disease.
435
00:24:49,845 --> 00:24:50,865
It is constant.
436
00:24:51,044 --> 00:24:52,304
You didn't ask for it.
437
00:24:52,304 --> 00:24:53,514
You don't get paid for it.
438
00:24:53,715 --> 00:24:57,014
It costs you money and it's unrelenting.
439
00:24:57,405 --> 00:24:58,605
How do you keep going?
440
00:24:59,294 --> 00:25:02,054
And it's, it's talk to others
that are doing the same.
441
00:25:02,250 --> 00:25:03,405
It it has.
442
00:25:03,615 --> 00:25:04,725
Yeah, I totally agree.
443
00:25:05,205 --> 00:25:10,155
I think doing it alone
is, is really difficult.
444
00:25:10,155 --> 00:25:14,575
Finding the community that also lives
with it is what makes a huge difference.
445
00:25:14,575 --> 00:25:17,790
Cause, you know, talking to
people that don't live it, I
446
00:25:17,790 --> 00:25:19,590
think most of us get frustrated.
447
00:25:20,010 --> 00:25:24,030
I literally live, I talk to people
about diabetes all day, but my family
448
00:25:24,210 --> 00:25:26,610
and my friends are totally clueless.
449
00:25:26,610 --> 00:25:31,260
I mean, they no way could I ever
trust them to do anything for me.
450
00:25:31,410 --> 00:25:31,830
So.
451
00:25:32,010 --> 00:25:32,850
That's interesting.
452
00:25:32,850 --> 00:25:35,040
And, and, and it's not unusual at all.
453
00:25:35,370 --> 00:25:36,965
And, and it's okay.
454
00:25:37,740 --> 00:25:40,990
I don't particularly wanna know
what your problems are either.
455
00:25:41,390 --> 00:25:43,110
I don't live their life.
456
00:25:43,380 --> 00:25:43,620
Yeah.
457
00:25:43,710 --> 00:25:45,780
And I don't like to feel elitist.
458
00:25:45,780 --> 00:25:50,700
Like, if you don't have T1D, you
don't understand, the bottom line
459
00:25:50,700 --> 00:25:53,040
for me is you don't understand.
460
00:25:53,040 --> 00:26:00,020
You can't possibly understand
what 24/7 feels like as a T1D.
461
00:26:03,015 --> 00:26:07,855
I used to say we're 24 hours away from
dead, and, uh, a doctor reminded me, No
462
00:26:07,905 --> 00:26:09,885
you're actually six hours away from dead.
463
00:26:10,305 --> 00:26:12,615
I said, well, thank you for that, but, um.
464
00:26:12,615 --> 00:26:12,945
Thank, yeah.
465
00:26:13,785 --> 00:26:19,995
I said growing old with this disease,
it, it's so very constant that connect
466
00:26:19,995 --> 00:26:24,825
with others who really, truly understand
not to take away from the support
467
00:26:24,825 --> 00:26:29,025
people, the spouses, the parents,
um, they have a different journey.
468
00:26:29,835 --> 00:26:30,015
Yeah.
469
00:26:30,105 --> 00:26:34,605
Um, I, I don't know what it's like to
be a parent of a child with diabetes
470
00:26:34,665 --> 00:26:40,485
and I didn't understand what my parents
went through, and I think I was 35
471
00:26:40,485 --> 00:26:44,775
years old when I finally thanked my
parents for the support they gave me.
472
00:26:44,985 --> 00:26:47,475
Uh, and stopped being
angry at the whole thing.
473
00:26:47,475 --> 00:26:47,835
So.
474
00:26:48,345 --> 00:26:48,435
Mm-hmm.
475
00:26:48,675 --> 00:26:50,355
Um, that's a different journey.
476
00:26:50,535 --> 00:26:50,745
Yeah.
477
00:26:51,075 --> 00:26:51,315
Yeah.
478
00:26:51,315 --> 00:26:54,165
It really is where you're at right now.
479
00:26:54,915 --> 00:26:57,525
Before we dive further
into today's episode.
480
00:26:57,930 --> 00:27:01,140
I want to give a quick shout
out to our sponsor, TempraMed
481
00:27:01,470 --> 00:27:03,570
makers of the Vivi Cap device.
482
00:27:04,260 --> 00:27:07,800
If you use insulin and who
doesn't use insulin, you probably
483
00:27:07,800 --> 00:27:11,550
already know how sensitive insulin
can be to temperature changes.
484
00:27:12,330 --> 00:27:16,800
When insulin gets much too cold or
too hot, it can lose its strength,
485
00:27:17,340 --> 00:27:21,810
and that means higher blood sugars,
along with all the fun symptoms like
486
00:27:21,840 --> 00:27:26,730
headaches, drowsiness, hunger, bathroom
trips, and even blurred vision.
487
00:27:27,870 --> 00:27:31,440
What's tricky is that those
unexplained blood sugar swings can
488
00:27:31,440 --> 00:27:35,160
often be linked to insulin that's
exposed to the wrong temperatures.
489
00:27:35,910 --> 00:27:38,520
That's where the Vivi Cap
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490
00:27:39,540 --> 00:27:43,170
It's a simple pocket size device
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491
00:27:43,170 --> 00:27:45,390
pens in extreme temperatures.
492
00:27:46,170 --> 00:27:47,190
No charging.
493
00:27:47,310 --> 00:27:48,450
No ice packs.
494
00:27:48,780 --> 00:27:53,700
Just pop your pen inside the
cap and it's ready to go 24/7.
495
00:27:54,659 --> 00:28:00,990
Vivi Cap is FDA registered, TSA approved
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496
00:28:01,379 --> 00:28:03,540
It's super easy and super flexible.
497
00:28:04,169 --> 00:28:08,699
So if you want to take one more variable
out of your diabetes management, check
498
00:28:08,699 --> 00:28:12,749
out Tempramed's Vivi Cap at tempramed.com.
499
00:28:14,070 --> 00:28:15,810
Now let's get back to today's program.
500
00:28:16,560 --> 00:28:19,649
What are some things, and I know
you recommend this on the website
501
00:28:19,649 --> 00:28:25,230
too, but what are some things
that you have prepared for aging?
502
00:28:25,379 --> 00:28:30,570
You know, I think you talk about
like your emergency planning and
503
00:28:30,574 --> 00:28:32,610
um, you know what you have for that.
504
00:28:32,970 --> 00:28:35,760
You talk about like health and wellness.
505
00:28:35,910 --> 00:28:39,210
So what would you like encourage people?
506
00:28:39,420 --> 00:28:43,140
The primary push that we've had
for quite a while, all through
507
00:28:43,140 --> 00:28:45,600
COVID as well, is a go bag.
508
00:28:45,840 --> 00:28:49,380
And what, what we've put up on
the website is a checklist of
509
00:28:49,380 --> 00:28:50,919
what you put into your go bag.
510
00:28:51,440 --> 00:28:51,830
Mm-hmm.
511
00:28:51,830 --> 00:28:55,170
And urgency is, just make a go bag.
512
00:28:55,170 --> 00:28:56,580
Just get a backpack.
513
00:28:56,910 --> 00:28:58,230
Get a bag you like.
514
00:28:58,290 --> 00:29:02,580
Anything that, you know, we say waterproof
because you may be in a place where
515
00:29:02,580 --> 00:29:04,650
it's raining as you well know today.
516
00:29:04,830 --> 00:29:05,070
Florida.
517
00:29:06,350 --> 00:29:11,730
Um, or that's hard enough to
hold two weeks of supply because,
518
00:29:12,150 --> 00:29:13,470
what if there's an earthquake?
519
00:29:13,530 --> 00:29:16,800
What if there's a tornado and
you have to get out quickly?
520
00:29:16,920 --> 00:29:18,030
You have to go to the hospital.
521
00:29:18,090 --> 00:29:19,500
Grab your go bag.
522
00:29:19,560 --> 00:29:25,350
Grab your insulin from your fridge, and
go, instead of having to sweep it into
523
00:29:25,350 --> 00:29:27,390
a bag or figure out what you're taking.
524
00:29:27,990 --> 00:29:31,530
It takes less than an
hour to put it together.
525
00:29:32,010 --> 00:29:32,219
Yep.
526
00:29:32,429 --> 00:29:35,520
On the website we have
pictures of people's go bags.
527
00:29:35,520 --> 00:29:38,429
They come in all different
colors and directions.
528
00:29:38,429 --> 00:29:41,790
I did a Zoom with Nicole
Johnson, who was the first Miss
529
00:29:41,790 --> 00:29:44,100
America wearing an insulin pump.
530
00:29:44,310 --> 00:29:49,590
And we talked about go bags and she showed
her go-bag, which was this beautiful
531
00:29:49,590 --> 00:29:53,429
tote bag with the logo of Miss America.
532
00:29:53,429 --> 00:29:56,490
And I said, you don't wanna use that
'cause someone's gonna steal your bag.
533
00:29:56,879 --> 00:29:59,459
They don't want-- it's a beautiful bag!
534
00:29:59,459 --> 00:30:03,149
But whatever is durable enough
that you can grab and go.
535
00:30:03,449 --> 00:30:05,760
And even if it's not emergency.
536
00:30:05,760 --> 00:30:09,389
Suppose someone calls you and say,
I have two tickets to go to Paris.
537
00:30:09,389 --> 00:30:10,139
Do you want them?
538
00:30:10,139 --> 00:30:11,550
You have to leave in an hour.
539
00:30:11,790 --> 00:30:12,060
Just grand.
540
00:30:13,445 --> 00:30:13,865
You can.
541
00:30:14,004 --> 00:30:15,570
It doesn't have to be a drama.
542
00:30:15,870 --> 00:30:21,300
What came up in a meeting last
night was you can also set up a mini
543
00:30:21,300 --> 00:30:25,500
go bag um, and, and I'm beginning
to realize how important this is.
544
00:30:25,500 --> 00:30:30,179
Anytime you leave your house and you're
gonna be gone for more than an hour,
545
00:30:30,659 --> 00:30:30,750
mm-hmm.
546
00:30:30,990 --> 00:30:35,580
What if your insulin infusion
site fails while you're out?
547
00:30:36,030 --> 00:30:39,899
What if you get a flat tire and
you're waiting for the tow truck and
548
00:30:40,784 --> 00:30:42,750
you, you need to change something?
549
00:30:43,379 --> 00:30:51,405
Um, a little kit that has insulin
infusion set, uh, syringes and,
550
00:30:51,659 --> 00:30:54,480
you know, and sugar grab it and go.
551
00:30:54,600 --> 00:30:57,600
Too many people who should
know better don't have these.
552
00:30:57,600 --> 00:30:58,050
They say,
553
00:30:58,350 --> 00:30:58,679
Right, exactly.
554
00:30:58,679 --> 00:30:59,220
I won't be gone.
555
00:31:00,090 --> 00:31:03,629
And don't know if you're
not gonna be gone long.
556
00:31:04,169 --> 00:31:05,370
Right, exactly.
557
00:31:05,730 --> 00:31:07,260
And you never know what's gonna happen.
558
00:31:07,290 --> 00:31:09,600
I mean, and this is for all ages.
559
00:31:09,600 --> 00:31:13,620
This isn't even just
for the aging population.
560
00:31:13,725 --> 00:31:17,205
I mean, everybody, I think,
should have this go bag.
561
00:31:17,205 --> 00:31:18,165
And I love the name.
562
00:31:18,165 --> 00:31:19,485
I just love this "go bag".
563
00:31:19,875 --> 00:31:20,325
Um.
564
00:31:20,595 --> 00:31:20,655
Go.
565
00:31:20,655 --> 00:31:24,135
Yeah, I mean, I have like a little
pouch, but I do forget to grab it
566
00:31:24,135 --> 00:31:28,335
sometimes, even though it's literally
hanging right in front of my door, so.
567
00:31:28,335 --> 00:31:28,995
Mm-hmm.
568
00:31:29,001 --> 00:31:31,275
Also, like you, you mentioned syringes.
569
00:31:31,275 --> 00:31:36,555
I mean, keeping syringes like
everywhere so that, um, like for
570
00:31:36,555 --> 00:31:39,465
me, like me, if my pod's gonna fail,
I'm gonna pull my insulin outta my
571
00:31:39,465 --> 00:31:41,385
pod and inject until I can get home.
572
00:31:42,195 --> 00:31:43,815
Diabetes is stressful enough.
573
00:31:44,445 --> 00:31:50,475
Don't let something that's not in
your expectation happen and then make
574
00:31:50,475 --> 00:31:54,645
your life a little bit worse when all
you need to do is go get this cute
575
00:31:54,645 --> 00:31:56,145
little bag and carry it with you.
576
00:31:56,265 --> 00:31:56,385
Yeah.
577
00:31:56,625 --> 00:31:58,125
It's not that difficult.
578
00:31:58,275 --> 00:32:01,665
It is a reminder that you have diabetes,
but that's not the point of it.
579
00:32:01,665 --> 00:32:07,275
The point of it is to reduce stress
and the things are unforeseen
580
00:32:07,275 --> 00:32:08,535
because you don't foresee them.
581
00:32:09,885 --> 00:32:13,515
They happen when you don't expect
them and don't need them or want them.
582
00:32:14,085 --> 00:32:14,265
Um.
583
00:32:14,270 --> 00:32:14,440
Mm-hmm.
584
00:32:14,595 --> 00:32:17,715
And it just takes the away
a stress just a little bit.
585
00:32:18,015 --> 00:32:20,415
So we have, we have checklist for go bags.
586
00:32:20,865 --> 00:32:27,285
Um, I also always recommend have
your medical data in one place.
587
00:32:27,285 --> 00:32:29,235
How you take care of your diabetes.
588
00:32:29,505 --> 00:32:32,745
The medication lists that
you, whatever it is you take.
589
00:32:33,225 --> 00:32:35,325
How you take when you take it.
590
00:32:35,835 --> 00:32:36,345
Um.
591
00:32:36,975 --> 00:32:38,955
The list of your healthcare providers.
592
00:32:39,285 --> 00:32:44,205
So if an emergency comes up and you
end up in the hands of a medical
593
00:32:44,835 --> 00:32:50,385
environment, you, you don't have to, uh,
remind them what your surgeries were.
594
00:32:50,385 --> 00:32:51,524
What your medication are.
595
00:32:51,585 --> 00:32:52,095
It's right there.
596
00:32:53,055 --> 00:32:55,725
So yeah, we have pages
that you can fill in.
597
00:32:55,815 --> 00:32:58,815
You can scan 'em in and put
'em on a, on a flash drive.
598
00:32:58,815 --> 00:33:00,735
You can load 'em on your phone.
599
00:33:01,155 --> 00:33:04,845
There's a way also... so that's what
we call a personal medical resume.
600
00:33:04,845 --> 00:33:06,945
Just have your stuff in one place.
601
00:33:07,305 --> 00:33:09,195
Update it every six months.
602
00:33:09,825 --> 00:33:13,514
Um, and maybe we'll put a reminder
on, you know, it's time to update.
603
00:33:14,175 --> 00:33:14,325
Yep.
604
00:33:15,645 --> 00:33:19,305
Just you have the stuff
available and ready to go.
605
00:33:19,785 --> 00:33:19,875
Mm-hmm.
606
00:33:20,115 --> 00:33:25,215
Set your... people have mobile phones
these days that you can set up Android
607
00:33:25,245 --> 00:33:28,185
or iPhones for emergency access.
608
00:33:28,215 --> 00:33:32,055
Most people don't know that and so
we have instructions for both phones,
609
00:33:32,685 --> 00:33:35,385
um, on how to access that and put in.
610
00:33:36,135 --> 00:33:41,205
So emergency personnel or anyone that is
helping you can get to your information.
611
00:33:41,205 --> 00:33:41,294
Mm-hmm.
612
00:33:42,105 --> 00:33:46,395
So it's just tips and tricks and
things that we don't think about,
613
00:33:46,395 --> 00:33:49,485
but as a group, we have thought
about them and we are adding things.
614
00:33:50,205 --> 00:33:50,294
Mm-hmm.
615
00:33:50,534 --> 00:33:52,094
To make it, just make it easier.
616
00:33:52,094 --> 00:33:52,844
It's hard enough.
617
00:33:53,415 --> 00:33:53,679
So, yeah.
618
00:33:54,225 --> 00:34:00,705
Yeah, thinking of like this emergency
folder of, of our information just is
619
00:34:01,064 --> 00:34:05,534
so helpful because, you know, a lot of
the healthcare systems, they do have,
620
00:34:05,715 --> 00:34:10,815
they can eventually access all of your
historical things, but that takes time.
621
00:34:11,205 --> 00:34:14,384
It's not like they can just hop on
and right away they have all your
622
00:34:14,384 --> 00:34:17,924
history, but if you bring it along,
like you're, you're setting yourself
623
00:34:17,924 --> 00:34:20,295
up for potentially better outcomes.
624
00:34:20,384 --> 00:34:20,565
Yeah.
625
00:34:20,565 --> 00:34:24,255
I have a little clear cover little
binder and it's in, there's one in
626
00:34:24,255 --> 00:34:25,924
my car, there's one in my Go bag.
627
00:34:26,205 --> 00:34:29,505
When I've been in the hospital,
I put it on the nightstand.
628
00:34:29,505 --> 00:34:35,550
And it says, "read this. I have type
one diabetes." It's big and it's bold.
629
00:34:35,700 --> 00:34:37,290
Whether they're gonna
read it, I don't know.
630
00:34:37,330 --> 00:34:41,070
But if they come in and ask a question,
you can refer to it and say, Hey, this,
631
00:34:41,400 --> 00:34:43,260
these are my settings on my insulin pump.
632
00:34:43,590 --> 00:34:43,770
Mm-hmm.
633
00:34:44,130 --> 00:34:46,620
This is, these are the medications I take.
634
00:34:46,950 --> 00:34:51,330
These are the ones that are central
medications, not just supplements.
635
00:34:51,480 --> 00:34:55,170
Um, because they don't
you, but you know, you and
636
00:34:55,200 --> 00:34:58,740
Yeah, but also you can't speak
clearly for yourself a lot of
637
00:34:58,740 --> 00:35:00,900
times in a hospital situation.
638
00:35:00,900 --> 00:35:03,660
So you thought and...
639
00:35:04,230 --> 00:35:06,540
Your advocate may not
know all the details.
640
00:35:06,540 --> 00:35:06,750
Right.
641
00:35:07,170 --> 00:35:07,770
Exactly.
642
00:35:07,980 --> 00:35:08,220
Yep.
643
00:35:08,220 --> 00:35:11,700
It, it, it just, it takes
a little preparation.
644
00:35:11,700 --> 00:35:18,090
I don't know how to help people carve
out the time to do it, uh, but I think
645
00:35:18,090 --> 00:35:21,630
it's an intention that you say, you
know, I just wanna feel a little safer.
646
00:35:21,630 --> 00:35:25,150
I want that problem to be gotten rid of.
647
00:35:25,280 --> 00:35:27,960
I'll take a half an hour
and pull it together.
648
00:35:28,170 --> 00:35:28,260
Mm-hmm.
649
00:35:28,500 --> 00:35:29,790
It's just, it's a planning thing.
650
00:35:29,790 --> 00:35:32,400
A lot of people don't like to
plan and I understand that.
651
00:35:33,030 --> 00:35:33,270
Right.
652
00:35:33,870 --> 00:35:35,550
But a lot of people
don't like stress either.
653
00:35:36,000 --> 00:35:38,485
Let's see if we can reduce the stress.
654
00:35:39,060 --> 00:35:43,530
Aging alone is stressful because
this topic, it's difficult.
655
00:35:43,710 --> 00:35:45,960
It's just really, really difficult.
656
00:35:46,530 --> 00:35:50,550
Nobody really wants to face
the fact that we won't be here.
657
00:35:50,940 --> 00:35:55,950
As far as I know, that's a reality and
we, and we will all be on that path.
658
00:35:56,310 --> 00:36:01,215
So, one more topic, and I think it's just
important to say real quickly, mm-hmm,
659
00:36:01,755 --> 00:36:06,825
towards end of life and if in hospice
care, this is something I just learned.
660
00:36:07,035 --> 00:36:11,505
Um, there is a thinking that
you withhold insulin at end of
661
00:36:11,505 --> 00:36:16,065
life and that is possibly the
worst advice that can be given.
662
00:36:16,305 --> 00:36:20,235
I never thought about it because I
didn't think about that part of life.
663
00:36:20,475 --> 00:36:24,525
You will, it will, you will end your
life, but it will be a bad way to go.
664
00:36:24,525 --> 00:36:29,535
So you should have written into your
wishes, do not withhold insulin.
665
00:36:30,165 --> 00:36:30,615
Yeah.
666
00:36:31,275 --> 00:36:32,265
But it happens.
667
00:36:32,385 --> 00:36:39,555
So this is all just trying to make
things as easy, least stress and make
668
00:36:39,555 --> 00:36:44,255
you feel as good as possible for all
the days you have left going forward.
669
00:36:44,475 --> 00:36:44,745
Yeah.
670
00:36:44,835 --> 00:36:45,375
It's just,
671
00:36:45,435 --> 00:36:45,585
yeah.
672
00:36:46,800 --> 00:36:53,070
Be set up to succeed and to be as happy as
possible, because that's what you can do.
673
00:36:53,280 --> 00:36:53,550
Right.
674
00:36:53,880 --> 00:36:54,120
Yeah.
675
00:36:54,360 --> 00:36:56,190
That's in our, in our own control.
676
00:36:57,750 --> 00:37:03,120
What are some things that you think,
just kind of in all of your discussions,
677
00:37:03,270 --> 00:37:08,850
has been like, have you found any
trends for what has helped lead
678
00:37:08,850 --> 00:37:12,040
you guys to aging so well with T1D?
679
00:37:12,300 --> 00:37:16,350
Because I mean, I look at you, I know
you, you go to Pilates and you are
680
00:37:16,350 --> 00:37:21,090
living like a great life, um, from a
physical activity standpoint, and you're
681
00:37:21,090 --> 00:37:23,400
enjoying the things that you wanna do.
682
00:37:23,910 --> 00:37:27,600
Is there, like, do you feel like, you
know, it's, there's things that you did
683
00:37:27,780 --> 00:37:32,010
that led you to be able to age so well
already, even, you know, you didn't have
684
00:37:32,010 --> 00:37:34,120
all of these tips, so how'd you do it?
685
00:37:34,980 --> 00:37:41,399
The overriding thing for me is to try to
live as best as possible in, in gratitude.
686
00:37:41,545 --> 00:37:44,970
I, I am, when things go wrong,
and, and quite honestly, they're
687
00:37:44,970 --> 00:37:48,029
going wrong at a faster pace
than I can actually keep up with.
688
00:37:48,299 --> 00:37:53,229
But when they do go wrong, I, I very
often go to, but I'm still lucky.
689
00:37:53,250 --> 00:37:57,180
I, first of all, I live in this
century, not the previous century
690
00:37:57,180 --> 00:37:58,770
where the technology wasn't there.
691
00:37:58,830 --> 00:38:01,710
Or I'm grateful that,
that the sun is shining.
692
00:38:01,770 --> 00:38:05,370
I, I sometimes have to reach
for the gratitude, but it just
693
00:38:05,370 --> 00:38:07,470
kind of makes me feel better.
694
00:38:08,220 --> 00:38:11,069
All the research says keep moving.
695
00:38:11,220 --> 00:38:18,600
Just if you look at anything on zones or
what the long agers do, they keep moving.
696
00:38:19,049 --> 00:38:21,509
Don't sit, don't sit and watch tv.
697
00:38:22,545 --> 00:38:26,355
Somehow get up and move and interact.
698
00:38:26,805 --> 00:38:29,295
And so also stay connected
in the community.
699
00:38:29,805 --> 00:38:34,515
Um, in, in my Pilates class, I've
heard instructors say, we do this
700
00:38:34,515 --> 00:38:41,025
exercise not because if you fall,
it'll help you get up and it's when
701
00:38:41,055 --> 00:38:43,125
you fall, it'll help you get up.
702
00:38:43,125 --> 00:38:43,215
Yes.
703
00:38:43,395 --> 00:38:46,155
As we age, we have nerve damage.
704
00:38:46,155 --> 00:38:52,785
We have proprioception falter, and
we are far more prone to falls.
705
00:38:52,785 --> 00:38:53,805
Mm-hmm.
706
00:38:53,811 --> 00:38:58,815
Uh, if vision issues, or you wear
bifocals, you're prone to falls it.
707
00:38:59,085 --> 00:39:05,445
If you're used to charging through life
and you go fast, you're gonna fall.
708
00:39:05,535 --> 00:39:10,725
It's all these little parts and you don't
wanna fall because that will set you back.
709
00:39:10,725 --> 00:39:17,985
So be strong or make sure you're, you
have some level of fitness 'cause that'll
710
00:39:17,985 --> 00:39:20,055
help you get off the floor if you fall.
711
00:39:20,055 --> 00:39:20,115
Um.
712
00:39:20,865 --> 00:39:21,315
Yeah.
713
00:39:22,470 --> 00:39:26,130
And as we age, very
often we don't hydrate.
714
00:39:26,520 --> 00:39:31,020
That's, that's, that's a tough
one to kind of make that habit,
715
00:39:31,020 --> 00:39:32,820
but make sure you're hydrated.
716
00:39:33,090 --> 00:39:33,150
Yeah.
717
00:39:33,150 --> 00:39:37,080
Drink whatever fluid you can,
but just make sure you hydrate.
718
00:39:37,650 --> 00:39:41,820
Um, there's, they're basic things
and I guess the other one is sleep.
719
00:39:42,270 --> 00:39:43,920
Um, sleep can be challenging.
720
00:39:44,160 --> 00:39:48,630
You age, uh, there are issues of
sleep apnea and, and what those
721
00:39:48,630 --> 00:39:51,630
are, but take care of those things.
722
00:39:51,660 --> 00:39:52,920
'cause sleep is essential.
723
00:39:52,980 --> 00:40:00,780
It's where your body recharges
so it basic things, but you can
724
00:40:00,780 --> 00:40:02,280
get overwhelmed and not do them.
725
00:40:03,330 --> 00:40:06,870
So maybe we can, as a
community, help help each other.
726
00:40:08,220 --> 00:40:09,540
Stay on a healthy path.
727
00:40:09,870 --> 00:40:11,280
Yeah, yeah, absolutely.
728
00:40:11,280 --> 00:40:15,810
I love, you know, help each other
and hold each other to that.
729
00:40:16,260 --> 00:40:21,870
But yeah, I read when I was probably,
I dunno, I wanna say like 18.
730
00:40:22,049 --> 00:40:23,820
Sheri Colberg wrote a book.
731
00:40:23,850 --> 00:40:28,770
It was like 50 Secrets of the Longest
Living People with Type one Diabetes,
732
00:40:28,800 --> 00:40:31,440
and I found it to be very inspiring.
733
00:40:31,500 --> 00:40:36,270
Some of the stuff now is, you know, it's,
it's an older book now, but I think the
734
00:40:36,270 --> 00:40:41,610
overall message is still so important from
what you get out of it because that's,
735
00:40:41,670 --> 00:40:43,140
that's pretty much what the book says.
736
00:40:43,740 --> 00:40:51,540
These people have stayed active and
made physical activity such a, like
737
00:40:51,540 --> 00:40:53,350
given it such a spotlight in their life.
738
00:40:53,400 --> 00:40:54,569
So definitely.
739
00:40:54,600 --> 00:40:56,759
Make it as simple as possible.
740
00:40:56,940 --> 00:40:58,109
Reward yourself.
741
00:40:58,109 --> 00:41:02,775
If it isn't a thing you like to do,
uh, find the things that you do.
742
00:41:02,775 --> 00:41:08,805
Like these are, these are all the things
that are out there and you hear them.
743
00:41:09,375 --> 00:41:12,225
Um, how do you make
them part of your life?
744
00:41:12,325 --> 00:41:13,505
How do you actually do it?
745
00:41:13,884 --> 00:41:14,345
Yeah, yeah.
746
00:41:14,345 --> 00:41:16,705
Actually put it on your, on your calendar.
747
00:41:16,720 --> 00:41:21,255
And if you don't, keep a calendar, keep
a calendar and, and you know, I, I write
748
00:41:21,255 --> 00:41:26,295
in the days I have Pilates class and I
write in days when I have activities.
749
00:41:26,415 --> 00:41:26,775
Um.
750
00:41:27,465 --> 00:41:27,555
Mm-hmm.
751
00:41:28,725 --> 00:41:30,525
This is all the smart things.
752
00:41:30,525 --> 00:41:32,115
It's not whether you have diabetes or not.
753
00:41:32,115 --> 00:41:36,045
These are just the smart things,
but particularly for your cognition
754
00:41:36,285 --> 00:41:40,275
and your wellbeing with diabetes,
because you do take care of yourself.
755
00:41:40,575 --> 00:41:45,495
I told the group last night, anyone here
who's lived with this disease over 50
756
00:41:45,495 --> 00:41:47,535
years, you've done something really well.
757
00:41:47,595 --> 00:41:48,765
You've really.
758
00:41:49,860 --> 00:41:51,750
You know how to organize yourself.
759
00:41:51,750 --> 00:41:53,670
You know how to pay attention.
760
00:41:54,120 --> 00:41:57,780
You know how to live in reality
and take your medication.
761
00:41:58,170 --> 00:42:01,290
So kudos you, you did a great job.
762
00:42:01,470 --> 00:42:05,820
And just keep doing that and
feel good that you actually have
763
00:42:05,820 --> 00:42:11,250
those skills that got you to 50
years, and that was no easy feat.
764
00:42:11,550 --> 00:42:13,230
It's like these little celebrations.
765
00:42:13,230 --> 00:42:16,200
These little milestones that you reach.
766
00:42:16,920 --> 00:42:17,100
Yeah.
767
00:42:17,100 --> 00:42:18,420
Appreciate yourself for that.
768
00:42:18,630 --> 00:42:19,470
Absolutely.
769
00:42:20,070 --> 00:42:20,370
Mm-hmm.
770
00:42:21,030 --> 00:42:21,240
Yeah.
771
00:42:21,240 --> 00:42:23,700
I love that they give those,
you know, like those little
772
00:42:23,700 --> 00:42:26,460
coins, those milestone coins.
773
00:42:26,520 --> 00:42:27,960
Um, I know Friends for Life does it.
774
00:42:27,960 --> 00:42:30,630
I think there's some other
places that give them out too.
775
00:42:31,660 --> 00:42:32,610
Joslin does.
776
00:42:32,700 --> 00:42:34,975
Um, I have them all, um.
777
00:42:34,980 --> 00:42:35,940
Yeah, right.
778
00:42:36,000 --> 00:42:38,220
I look at mine like,
yeah, that's a long time.
779
00:42:39,950 --> 00:42:43,830
Joslin used to give a gold
watch when you hit 50 years.
780
00:42:43,860 --> 00:42:45,830
And I was so looking forward to that.
781
00:42:45,860 --> 00:42:48,130
I go to Joslyn in Boston.
782
00:42:48,299 --> 00:42:52,350
Every Christmas I would go there
to readjust my insulin needs.
783
00:42:52,350 --> 00:42:56,640
And I, it was a hard time as
a teenager, but it was smart.
784
00:42:57,270 --> 00:43:01,710
Um, but when I got to 50 years, I,
oh, I'm gonna get my gold watch!
785
00:43:01,980 --> 00:43:05,040
And they stopped giving gold
watches because so many of
786
00:43:05,040 --> 00:43:06,390
us were living that long.
787
00:43:06,390 --> 00:43:07,799
I thought wait, wait.
788
00:43:07,799 --> 00:43:08,490
That was wrong!
789
00:43:08,490 --> 00:43:09,089
How 'bout my watch?
790
00:43:09,799 --> 00:43:14,490
And so then they give
you a brass medallion.
791
00:43:15,000 --> 00:43:17,130
It's not a gold watch, but it's not.
792
00:43:17,130 --> 00:43:17,140
Yeah.
793
00:43:17,140 --> 00:43:17,700
That's not, still not the same.
794
00:43:20,790 --> 00:43:21,420
That's, yeah.
795
00:43:21,420 --> 00:43:22,500
You, you need that gold.
796
00:43:22,500 --> 00:43:23,520
You need a gold watch.
797
00:43:23,580 --> 00:43:26,700
You do, you have, you
certainly earned a gold watch.
798
00:43:26,700 --> 00:43:28,319
I think we need to make that happen again.
799
00:43:28,770 --> 00:43:32,045
And gotta get, gotta
get you that gold Watch.
800
00:43:32,045 --> 00:43:38,265
My husband, he actually bought
me a vintage, um space Watch
801
00:43:38,595 --> 00:43:42,884
that was created in the year that
I was diagnosed with diabetes.
802
00:43:42,884 --> 00:43:48,255
It was a 1965 watch, so it's a
vintage watch, um, for my 50 year
803
00:43:48,345 --> 00:43:51,075
because he goes, okay, you didn't
get your gold watch, but here you go.
804
00:43:51,495 --> 00:43:53,565
Oh my God, that is amazing.
805
00:43:54,194 --> 00:43:59,415
You have to celebrate and
realize how well you've done.
806
00:43:59,625 --> 00:44:03,674
Days are not easy and there are other
things that are really not easy, um,
807
00:44:04,035 --> 00:44:05,955
that you get through them is remarkable.
808
00:44:06,194 --> 00:44:10,215
I also think a lot of how we've
done so well is because we
809
00:44:10,215 --> 00:44:12,825
do pay attention to exercise.
810
00:44:12,825 --> 00:44:14,505
We do pay attention to food.
811
00:44:15,015 --> 00:44:18,705
It, it's been something that's
been drummed into so many of us.
812
00:44:18,705 --> 00:44:26,205
So I wonder if I didn't have type one
diabetes, um, would I be overweight?
813
00:44:26,235 --> 00:44:32,685
Would I uh, uh, see, I see my family,
who, who don't have T1D and I'm healthy.
814
00:44:33,194 --> 00:44:34,305
It's a reminder.
815
00:44:34,515 --> 00:44:37,575
Um, and that you're doing
it again, celebrate that.
816
00:44:37,665 --> 00:44:37,995
It's,
817
00:44:38,085 --> 00:44:42,075
I remember like growing up
on cosmic brownies and-- Oof.
818
00:44:42,884 --> 00:44:45,075
So yeah, learning about the food.
819
00:44:45,075 --> 00:44:47,995
Never, I don't, I don't know that it
ever would've happened without T1D.
820
00:44:48,555 --> 00:44:53,055
And sometimes we'll go get a sandwich and
he'll come back from buying the sandwich
821
00:44:53,055 --> 00:44:57,464
and I'll have a candy bar and I'll start
eating the candy bar before lunch and go,
822
00:44:58,035 --> 00:44:59,595
I don't understand why you're doing that.
823
00:44:59,654 --> 00:45:01,154
That's No, no, no, no.
824
00:45:01,424 --> 00:45:01,515
Mm-hmm.
825
00:45:01,545 --> 00:45:02,955
And he goes, well, I like it.
826
00:45:03,585 --> 00:45:08,235
And, and we're, we maybe have a little
more control on that, and we will,
827
00:45:08,654 --> 00:45:12,585
I'll have a bite after lunch, but
first I'll eat, okay, fried food.
828
00:45:12,975 --> 00:45:15,825
So I said, you just don't
have diabetes now do you?
829
00:45:16,025 --> 00:45:20,565
You're just... he said, "Well
I was hungry." I understand.
830
00:45:20,685 --> 00:45:24,705
Most of us did learn some
really good health habits.
831
00:45:24,710 --> 00:45:24,790
Mm-hmm.
832
00:45:24,870 --> 00:45:27,375
Because type one diabetes, so.
833
00:45:27,380 --> 00:45:27,470
Mm-hmm.
834
00:45:27,549 --> 00:45:27,630
Yep.
835
00:45:28,665 --> 00:45:30,735
And I'm definitely grateful for that.
836
00:45:30,795 --> 00:45:31,695
Portion size.
837
00:45:31,935 --> 00:45:37,485
Um, I learned that, um, at Joslin
Clinic and I mean, it was so detailed
838
00:45:37,485 --> 00:45:41,715
that they would cut off pieces,
like parts of a piece of bread so
839
00:45:41,715 --> 00:45:43,245
you have the right number of grams.
840
00:45:43,245 --> 00:45:45,975
I went, well, that's a little
extreme, but some people did that.
841
00:45:46,634 --> 00:45:53,475
Um, but understanding portion size and
consistency and, and a lot went into what
842
00:45:53,475 --> 00:45:56,145
got us here this many years down the line.
843
00:45:56,295 --> 00:45:56,384
Mm-hmm.
844
00:45:57,375 --> 00:46:02,985
You also learn long term you
can do everything right and
845
00:46:02,985 --> 00:46:04,515
not get the result you expect.
846
00:46:04,725 --> 00:46:07,035
This disease is capricious.
847
00:46:07,035 --> 00:46:09,285
It is un unexpected.
848
00:46:09,285 --> 00:46:09,495
Rude.
849
00:46:10,440 --> 00:46:11,370
Unreliable.
850
00:46:11,370 --> 00:46:13,230
You, things happen.
851
00:46:13,500 --> 00:46:17,279
I watched a little video reel of a
little girl saying, it's not perfect,
852
00:46:17,430 --> 00:46:19,200
but you can be as good as possible.
853
00:46:19,350 --> 00:46:22,140
You can do the best you can.
854
00:46:22,200 --> 00:46:26,250
And, um, it's an understanding
that it's not, you are not
855
00:46:26,250 --> 00:46:27,420
gonna be perfect every day.
856
00:46:27,420 --> 00:46:29,520
This disease doesn't let that happen.
857
00:46:30,180 --> 00:46:30,330
Mm-hmm.
858
00:46:30,505 --> 00:46:33,359
Uh, and yet you can keep going.
859
00:46:33,480 --> 00:46:35,460
So it's, it's just that awareness.
860
00:46:35,640 --> 00:46:35,910
Yeah.
861
00:46:36,180 --> 00:46:36,420
Yeah.
862
00:46:36,420 --> 00:46:37,080
Absolutely.
863
00:46:37,080 --> 00:46:38,670
And I love that a little
girl was saying it.
864
00:46:38,790 --> 00:46:39,060
Yeah.
865
00:46:39,089 --> 00:46:43,710
It's just that reminder that this
disease doesn't let you be perfect.
866
00:46:44,430 --> 00:46:44,700
Right.
867
00:46:45,029 --> 00:46:48,000
Uh, it just doesn't, life
doesn't let you be perfect.
868
00:46:48,060 --> 00:46:50,970
So, um, the disease disease
869
00:46:50,970 --> 00:46:53,009
just follows that, that path and.
870
00:46:53,009 --> 00:46:54,120
It sure does.
871
00:46:54,359 --> 00:46:56,790
You do everything right
and everything goes wrong.
872
00:46:57,509 --> 00:46:57,779
Mm-hmm.
873
00:46:58,710 --> 00:47:03,569
And, and there are days, there are
days where you can explain it and, and
874
00:47:03,569 --> 00:47:07,460
you don't, try not to beat yourself
up and you try to get back on track.
875
00:47:08,294 --> 00:47:11,774
Um, and you give yourself some
grace on that period of time.
876
00:47:11,805 --> 00:47:12,464
Mm-hmm.
877
00:47:13,064 --> 00:47:13,305
Yeah.
878
00:47:13,634 --> 00:47:14,685
Yeah, absolutely.
879
00:47:14,805 --> 00:47:16,064
Giving yourself the grace.
880
00:47:16,095 --> 00:47:19,214
It's just such a good way to say
it, but it's what we have to do.
881
00:47:19,214 --> 00:47:20,595
We have to give ourself grace.
882
00:47:22,004 --> 00:47:23,745
And maybe humor.
883
00:47:23,805 --> 00:47:28,754
It is all, if you were sitting a hundred
feet above watching everyone on earth
884
00:47:28,754 --> 00:47:31,995
doing all these things and getting all
stressed, you'd say, oh, calm down.
885
00:47:31,995 --> 00:47:33,015
It'll all work out.
886
00:47:34,725 --> 00:47:40,455
Some, some perspective of it,
it'll work out or it won't.
887
00:47:41,024 --> 00:47:44,745
But stressing on it doesn't
bring it any easier.
888
00:47:44,745 --> 00:47:45,285
Making it easier.
889
00:47:45,495 --> 00:47:45,705
Yeah.
890
00:47:45,944 --> 00:47:47,654
It doesn't change it either.
891
00:47:47,745 --> 00:47:50,595
You know, getting, getting upset
if anything is just gonna make it
892
00:47:50,595 --> 00:47:53,085
worse because you got some stress.
893
00:47:54,015 --> 00:47:54,285
Yeah.
894
00:47:54,524 --> 00:47:56,024
It'll just like, you need more insulin.
895
00:47:58,035 --> 00:47:58,455
Yeah.
896
00:47:59,055 --> 00:47:59,325
Yeah.
897
00:47:59,685 --> 00:48:04,125
I think, I don't, I love, like, I
love the pages where they use humor to
898
00:48:04,365 --> 00:48:06,375
kind of cope with type one diabetes.
899
00:48:06,375 --> 00:48:09,255
So that's, that's kind of
my, that's my type of people.
900
00:48:09,285 --> 00:48:10,515
That's what I like to use.
901
00:48:10,575 --> 00:48:13,965
So, it's sometimes a little
dark humor, but it works.
902
00:48:15,045 --> 00:48:19,605
So yeah, it's just makes everything,
I don't know, humor makes everything
903
00:48:19,605 --> 00:48:22,005
a little bit easier to, to manage.
904
00:48:22,065 --> 00:48:22,424
It does.
905
00:48:23,235 --> 00:48:26,295
And I think you bring it back to
just, community sometimes helps
906
00:48:26,295 --> 00:48:31,035
you see the humor and when you just
are so deep into, this is horrible.
907
00:48:31,995 --> 00:48:32,415
Absolutely.
908
00:48:33,825 --> 00:48:37,464
Giggle is, yeah but, you know,
from the other side, it's kind
909
00:48:37,485 --> 00:48:41,865
of... so it's helpful to have
other perspectives sometimes.
910
00:48:42,045 --> 00:48:42,285
Yeah.
911
00:48:42,465 --> 00:48:46,785
And you, I have to say, are
just so absolutely incredible
912
00:48:46,785 --> 00:48:48,465
at getting a community together.
913
00:48:49,575 --> 00:48:52,695
I know you have a Facebook
page for T1D to 100.
914
00:48:52,785 --> 00:48:56,835
The Loop and Learn community is just, of
course, I've been a part of that for a
915
00:48:56,835 --> 00:49:00,075
long time, but it's just, it's so amazing.
916
00:49:00,075 --> 00:49:01,065
It's like, you did that.
917
00:49:01,155 --> 00:49:04,455
Like, it's just so, I can't wait
to see what the community becomes
918
00:49:04,455 --> 00:49:07,615
for, you know, the T1D to 100.
919
00:49:07,685 --> 00:49:09,315
I just see it grow, growing.
920
00:49:09,945 --> 00:49:11,895
We've been up for three weeks.
921
00:49:12,045 --> 00:49:15,135
Uh, the Facebook group is, is growing.
922
00:49:15,135 --> 00:49:17,925
It's going, it's, it's
faster than I anticipated.
923
00:49:18,375 --> 00:49:18,825
Um.
924
00:49:19,575 --> 00:49:23,174
We're touching a nerve of people
who are saying, yeah, you're right,
925
00:49:23,355 --> 00:49:25,005
I don't know what to do as I age.
926
00:49:25,245 --> 00:49:25,995
I need help.
927
00:49:26,174 --> 00:49:30,404
And, um, people are just coming
out saying, how do I help?
928
00:49:30,404 --> 00:49:31,575
How do I get involved?
929
00:49:31,725 --> 00:49:32,025
Um.
930
00:49:32,025 --> 00:49:32,115
Mm-hmm.
931
00:49:32,595 --> 00:49:36,585
And we're looking at a, a group
that focuses on advocacy because we
932
00:49:36,705 --> 00:49:40,935
do need to help organizations and
hospitals understand what we need.
933
00:49:40,995 --> 00:49:43,785
We need nursing schools to
understand what we need.
934
00:49:43,964 --> 00:49:46,484
Um, all of this is advocacy.
935
00:49:46,484 --> 00:49:52,964
We need some pressure on, um, fundraising
organizations to acknowledge that
936
00:49:52,964 --> 00:49:55,005
we are a large group of people.
937
00:49:55,125 --> 00:50:01,245
Um, most of the large groups that
do fundraising don't focus on aging.
938
00:50:01,484 --> 00:50:01,815
Um.
939
00:50:01,875 --> 00:50:02,174
Right.
940
00:50:03,134 --> 00:50:05,984
We're not as cute on the,
as as poster children I see.
941
00:50:06,585 --> 00:50:08,205
You're absolutely adorable.
942
00:50:08,205 --> 00:50:11,475
So I can't agree with, I
disagree with that one.
943
00:50:12,630 --> 00:50:16,980
But it, it, it's, we're just not the
cute little ones that they parade out.
944
00:50:17,160 --> 00:50:19,140
And maybe they should have
us all come out with walkers.
945
00:50:19,200 --> 00:50:19,680
I don't know.
946
00:50:19,950 --> 00:50:24,900
We, we need a, a place at the
table in, in congressional, um,
947
00:50:24,960 --> 00:50:29,520
pressure and, um, making changes,
otherwise changes will be made and
948
00:50:29,520 --> 00:50:31,080
we don't have a seat at the table.
949
00:50:31,200 --> 00:50:36,570
So it's, we are pulling together
an advocacy effort, trying to get
950
00:50:36,570 --> 00:50:40,200
the voice loud enough to say, pay
attention to this demographic.
951
00:50:40,470 --> 00:50:41,340
We're not huge.
952
00:50:42,000 --> 00:50:43,500
We are not type twos.
953
00:50:44,010 --> 00:50:46,470
And even they require that advocacy.
954
00:50:46,470 --> 00:50:49,920
So part of those things
we're trying to do as well.
955
00:50:50,730 --> 00:50:53,220
Type one, is so incredibly unique.
956
00:50:53,220 --> 00:51:00,600
And right now there is not nearly
enough taught in school about it.
957
00:51:00,810 --> 00:51:05,190
So it's like, it either needs to start
getting taught so that people can be
958
00:51:05,190 --> 00:51:12,645
better cared for, or we need to come up
with a way that we can get those people
959
00:51:12,645 --> 00:51:17,055
that were parents of a type one to be
able to go in and, and help people.
960
00:51:17,475 --> 00:51:22,865
Some kind of easier path than
becoming, you know, this,
961
00:51:23,025 --> 00:51:27,105
getting these certifications
or whatever's necessary now.
962
00:51:27,165 --> 00:51:27,435
Yeah.
963
00:51:27,705 --> 00:51:30,225
And certifications would absolutely help.
964
00:51:30,465 --> 00:51:35,445
It, it was, would kind of regulate
the knowledge base, um, so everyone's
965
00:51:35,535 --> 00:51:39,435
kind of on the same page and it
would've reduced the liability.
966
00:51:39,525 --> 00:51:41,715
People are there, the
people have the knowledge.
967
00:51:42,195 --> 00:51:47,785
With more and more people aging into
this category, the help will be needed.
968
00:51:47,785 --> 00:51:50,475
The there, there has to
be a change in the system.
969
00:51:50,475 --> 00:51:52,905
So we advocate for the change.
970
00:51:53,145 --> 00:51:55,755
Hopefully we can get into the
nursing schools so that they
971
00:51:55,755 --> 00:51:57,525
teach the proper information.
972
00:51:58,875 --> 00:52:01,695
A lot is still being misinformed.
973
00:52:01,995 --> 00:52:02,085
Yes.
974
00:52:02,085 --> 00:52:03,435
So it's education.
975
00:52:03,435 --> 00:52:04,365
It's community.
976
00:52:04,365 --> 00:52:11,025
Again, it's having a voice and
sharing that and it's our goal.
977
00:52:13,560 --> 00:52:17,560
I kind of have three-pronged of
approach, which, which is help the T1D.
978
00:52:17,580 --> 00:52:20,970
That's my primary, you
know, help my people age.
979
00:52:20,970 --> 00:52:21,060
Mm-hmm.
980
00:52:21,390 --> 00:52:24,150
Greatly and as happily as possible.
981
00:52:24,600 --> 00:52:30,030
Then interact with the research
community who will validate our concerns.
982
00:52:30,420 --> 00:52:31,200
They'll study it.
983
00:52:31,200 --> 00:52:33,060
They'll say, what are you concerned about?
984
00:52:33,570 --> 00:52:38,360
Um, I'm speaking at a conference,
uh, next week, uh, at Harvard Joslin,
985
00:52:38,430 --> 00:52:43,450
and, and my husband is as well,
because he is the caregiver of a T1D.
986
00:52:43,470 --> 00:52:46,620
So let's get the voice
of what our needs are.
987
00:52:47,010 --> 00:52:52,050
Let them research it, validate it, and
let's take that into the healthcare
988
00:52:52,050 --> 00:52:54,780
community and say, this is the reality.
989
00:52:54,780 --> 00:52:57,360
This is how you need to
practice the medicine.
990
00:52:57,600 --> 00:53:00,390
This is how you, to provide care.
991
00:53:00,780 --> 00:53:04,880
So it's, it's a kind of a
three-prong approach and, um, that,
992
00:53:04,880 --> 00:53:08,180
that's our goal is to be loud.
993
00:53:08,930 --> 00:53:09,790
It's so good.
994
00:53:09,975 --> 00:53:14,415
Like, thank you, so much for having
such a great voice that you're
995
00:53:14,415 --> 00:53:20,355
willing to travel to these places
and give these talks and create these
996
00:53:20,355 --> 00:53:23,235
sites and, uh, make the difference.
997
00:53:23,355 --> 00:53:24,445
We're all the experts.
998
00:53:24,464 --> 00:53:25,515
We are the experts.
999
00:53:25,694 --> 00:53:31,305
We, you, you can't live with something
24/7 every single second and not come
1000
00:53:31,305 --> 00:53:35,985
away with some expertise and that
we can share it and that someone's
1001
00:53:35,985 --> 00:53:38,865
willing to listen and make changes.
1002
00:53:38,870 --> 00:53:39,069
Mm-hmm.
1003
00:53:39,150 --> 00:53:44,700
For us is really pretty essential
so that we deserve to be safe.
1004
00:53:44,730 --> 00:53:48,000
We deserve to be taken care of as we need.
1005
00:53:48,600 --> 00:53:51,779
And, um, we have to help
those who are gonna do that
1006
00:53:51,839 --> 00:53:53,430
understand what those needs are.
1007
00:53:54,240 --> 00:53:54,930
Absolutely.
1008
00:53:55,259 --> 00:53:56,790
If they don't know, we'll help 'em.
1009
00:53:57,214 --> 00:54:01,439
I, I, I mentioned in my
talk to ADCES, just ask us.
1010
00:54:01,500 --> 00:54:04,020
Ask anybody who's lived with
this disease for a while.
1011
00:54:04,020 --> 00:54:05,069
We'll talk to you.
1012
00:54:05,310 --> 00:54:10,049
We have a lot to say and we will help
you understand what the needs are.
1013
00:54:10,319 --> 00:54:10,410
Mm-hmm.
1014
00:54:10,950 --> 00:54:13,439
So we, we welcome that opportunity.
1015
00:54:13,709 --> 00:54:15,299
Some great researchers out there.
1016
00:54:15,299 --> 00:54:16,379
Amazing people.
1017
00:54:16,500 --> 00:54:16,770
Yeah.
1018
00:54:16,890 --> 00:54:20,189
I'm really, I'm really, really
glad that you're going to these
1019
00:54:20,189 --> 00:54:24,839
conferences and people are, people are
definitely hearing you, so thank you.
1020
00:54:25,305 --> 00:54:28,845
Is there anything that you
feel like everyone with type
1021
00:54:28,845 --> 00:54:30,015
one diabetes should know?
1022
00:54:30,135 --> 00:54:34,065
If you could tell everybody
one thing, what would it be?
1023
00:54:34,185 --> 00:54:34,935
Top of my head?
1024
00:54:35,175 --> 00:54:36,245
Make a go bag.
1025
00:54:36,555 --> 00:54:40,335
I, I think it's kind of check your,
how well you're coping with this
1026
00:54:40,335 --> 00:54:42,615
because it's so, so, so constant.
1027
00:54:42,615 --> 00:54:42,705
And
1028
00:54:43,275 --> 00:54:43,965
mm-hmm
1029
00:54:44,880 --> 00:54:45,765
keep on track.
1030
00:54:45,860 --> 00:54:49,165
It'll, it'll help you
happily make your go bag.
1031
00:54:49,185 --> 00:54:54,285
It will help you, um, stay level when
you're talking to your care providers.
1032
00:54:54,435 --> 00:55:00,525
Uh, it just, this disease is hard
and so how do we make it easier and,
1033
00:55:00,585 --> 00:55:02,985
and help each other stay connected.
1034
00:55:04,005 --> 00:55:07,215
Eat food you like periodically
that isn't on your list.
1035
00:55:07,215 --> 00:55:11,235
You know, just be as happy as
possible and, um, but connect.
1036
00:55:11,295 --> 00:55:12,105
Absolutely connect.
1037
00:55:12,345 --> 00:55:12,915
That's great.
1038
00:55:13,215 --> 00:55:13,665
I love that.
1039
00:55:14,385 --> 00:55:20,310
So I think this is, this is
only the start and hopefully the
1040
00:55:20,310 --> 00:55:23,460
listeners today, um, feel inspired.
1041
00:55:23,520 --> 00:55:28,320
You know, with you're a parent, you know,
your, your child's gonna grow up and not
1042
00:55:28,320 --> 00:55:31,230
have you one day, you know, get involved.
1043
00:55:31,230 --> 00:55:33,360
It's never too soon to get involved.
1044
00:55:33,450 --> 00:55:37,935
I think that sometimes we forget
how fast life can, can go by.
1045
00:55:38,670 --> 00:55:40,020
Be, be the difference.
1046
00:55:40,020 --> 00:55:43,830
It has to be-- you know, if, if
you don't do it, who's going to?
1047
00:55:44,040 --> 00:55:45,030
Joanne's going to.
1048
00:55:45,360 --> 00:55:49,950
But we need to, you know, we need
to come together and, and do it.
1049
00:55:49,950 --> 00:55:54,060
So hopefully we will, you know,
people are gonna be inspired by you.
1050
00:55:54,440 --> 00:55:54,930
Well, thank you.
1051
00:55:54,930 --> 00:55:58,950
I just hope people set some attention
and say, yeah, we, we just need to
1052
00:55:58,950 --> 00:56:00,750
make it a little better for all of us.
1053
00:56:01,200 --> 00:56:04,560
We, we live in a chronic, crazy world
right now, and, and there's a lot of,
1054
00:56:05,050 --> 00:56:09,960
um mm-hmm, concern and unhappiness,
but we can do something about this
1055
00:56:09,960 --> 00:56:14,580
stuff that affects us so, so directly
and others who need our help.
1056
00:56:14,580 --> 00:56:16,260
So reach out.
1057
00:56:16,260 --> 00:56:21,430
Be part of the community and come visit
us and, and ask us what your questions.
1058
00:56:21,430 --> 00:56:23,400
We're on Facebook right now.
1059
00:56:23,400 --> 00:56:24,150
We're growing.
1060
00:56:24,150 --> 00:56:25,320
We're on Instagram.
1061
00:56:25,560 --> 00:56:29,910
I'm learning about social
media, um, also on LinkedIn.
1062
00:56:29,910 --> 00:56:32,700
So we're trying to get the
word out that we're here.
1063
00:56:32,700 --> 00:56:33,660
And where do they find you?
1064
00:56:33,660 --> 00:56:37,110
Can you tell 'em what the, what
the social media pages are called?
1065
00:56:37,110 --> 00:56:39,390
And also what's the website, URL?
1066
00:56:39,450 --> 00:56:42,180
We can link it in the, in the
podcast description as well.
1067
00:56:42,510 --> 00:56:46,130
They're, um, T1Dto100.com.
1068
00:56:48,450 --> 00:56:48,930
Put that in.
1069
00:56:48,930 --> 00:56:49,740
You'll find us.
1070
00:56:49,890 --> 00:56:54,330
Just so you know, um, doing our graphics
for the website was real interesting,
1071
00:56:54,420 --> 00:57:00,160
uh, exercise in, what is the image
and the, um, essence of what we're
1072
00:57:00,160 --> 00:57:03,040
trying to convey to the community.
1073
00:57:03,060 --> 00:57:04,740
And it's that we're on this journey.
1074
00:57:04,800 --> 00:57:05,940
Everyone's on a journey.
1075
00:57:06,060 --> 00:57:07,290
It's their own journey.
1076
00:57:07,860 --> 00:57:11,700
And you can be, it's like a river and
you can understand it's gonna flow.
1077
00:57:11,700 --> 00:57:17,190
It's gonna take a lot of funny turns,
and sometimes you'll have, um, running
1078
00:57:17,190 --> 00:57:19,380
streams and you'll have rocks in there.
1079
00:57:19,980 --> 00:57:22,200
And you are on your own journey.
1080
00:57:22,350 --> 00:57:26,640
Make that journey as smooth as
possible, as understandable.
1081
00:57:26,640 --> 00:57:30,360
And if you get thrown out of the
canoe, get back in the canoe or
1082
00:57:30,360 --> 00:57:33,420
whatever your way is of navigating.
1083
00:57:33,900 --> 00:57:39,330
How do we navigate this together and
be as safe as possible and, um, enjoy
1084
00:57:39,330 --> 00:57:41,190
the journey as much as possible?
1085
00:57:41,910 --> 00:57:42,660
That's the goal.
1086
00:57:42,660 --> 00:57:46,770
So we have this sense of a, of, of,
kind of like a river, and that's
1087
00:57:46,770 --> 00:57:49,140
kind of our goal of we're all here.
1088
00:57:49,350 --> 00:57:50,400
We're all doing this.
1089
00:57:50,460 --> 00:57:52,950
Let's, let's do it as well as we can.
1090
00:57:53,070 --> 00:57:53,430
Yeah.
1091
00:57:53,430 --> 00:57:57,240
And that's like the perfect imagery
of everything you just said.
1092
00:57:57,240 --> 00:58:01,935
Like, I mean, what a great quote
and image to, to give to everything.
1093
00:58:01,935 --> 00:58:03,345
And the website is beautiful.
1094
00:58:03,495 --> 00:58:05,175
It is very nicely done.
1095
00:58:05,355 --> 00:58:05,745
So.
1096
00:58:05,805 --> 00:58:09,285
That was a, that was a project of
passion to figure this one out.
1097
00:58:09,285 --> 00:58:09,865
Um, thank you.
1098
00:58:09,865 --> 00:58:15,795
That people feel safe in it and, um, and
enjoy what they're reading and learn.
1099
00:58:16,575 --> 00:58:16,905
Yeah.
1100
00:58:17,115 --> 00:58:19,605
Well, I really enjoyed,
uh, this conversation.
1101
00:58:19,605 --> 00:58:24,285
It's always such a pleasure to talk
to you, get to, to hear about what
1102
00:58:24,285 --> 00:58:28,425
you're doing and, um, you know, you
are, you're truly incredible and
1103
00:58:28,545 --> 00:58:30,315
just greatly appreciate your time.
1104
00:58:31,935 --> 00:58:32,115
Perfect.
1105
00:58:32,115 --> 00:58:34,605
And thank you so much for
what you do in our community.
1106
00:58:34,605 --> 00:58:34,815
So.
1107
00:58:35,175 --> 00:58:35,835
It's wonderful.
1108
00:58:35,985 --> 00:58:36,525
Thank you.
1109
00:58:36,825 --> 00:58:37,755
Thank you, thank you.
1110
00:58:38,175 --> 00:58:43,035
Well, um, and thank you to our listeners
for joining us today on the Think Like
1111
00:58:43,035 --> 00:58:50,805
a Pancreas--The Podcast, and we will
link Joanne, the T1D to 100, uh, all
1112
00:58:50,805 --> 00:58:54,765
the social media platforms and we'll
link the website in the description.
1113
00:58:54,765 --> 00:58:58,815
So make sure, if you haven't seen those,
check 'em out, join the social media
1114
00:58:58,815 --> 00:59:02,025
pages and you know, come on, engage.
1115
00:59:02,445 --> 00:59:06,375
Um, Joanne's gonna be very
welcoming on, on those platforms.
1116
00:59:06,615 --> 00:59:10,125
So thanks again for listening
and we'll catch you next time.
1117
00:59:10,130 --> 00:59:10,590
Thanks everyone.
1118
00:59:11,085 --> 00:59:14,475
Thanks for tuning in to Think
Like a Pancreas--The Podcast.
1119
00:59:14,565 --> 00:59:18,825
If you enjoyed today's episode, don't
forget to like, follow or subscribe
1120
00:59:19,215 --> 00:59:21,015
on your favorite podcast app.
1121
00:59:22,065 --> 00:59:24,735
Think like a Pancreas--The
Podcast is brought to you by
1122
00:59:24,735 --> 00:59:26,505
Integrated Diabetes Services.
1123
00:59:26,985 --> 00:59:32,055
Where experience meets expertise, passion
meets compassion, and diabetes care
1124
00:59:32,055 --> 00:59:33,945
is personal because we live it too.
1125
00:59:34,590 --> 00:59:38,280
Our team of clinicians, all living
with type one diabetes understands
1126
00:59:38,280 --> 00:59:39,509
the challenges firsthand.
1127
00:59:40,259 --> 00:59:42,540
We're here to help no matter
where you are in the world.
1128
00:59:43,200 --> 00:59:47,009
In glucose management, the self-care
strategies, the latest tech,
1129
00:59:47,310 --> 00:59:52,860
sports, and exercise, weight loss,
type one pregnancy, and emotional
1130
00:59:52,860 --> 00:59:54,420
wellbeing, we've got you covered.
1131
00:59:55,050 --> 00:59:58,259
We offer consultations in
English and Spanish via phone,
1132
00:59:58,259 --> 01:00:00,180
video, chat, email and text.
1133
01:00:00,870 --> 01:00:01,545
Wanna learn more?
1134
01:00:01,995 --> 01:00:08,250
Visit integrateddiabetes.com or
email info@integrateddiabetes.com
1135
01:00:08,640 --> 01:00:09,990
to schedule a consultation.
1136
01:00:10,710 --> 01:00:14,499
On behalf of Think Like a Pancreas--The
Podcast, I'm Gary Scheiner,
1137
01:00:14,850 --> 01:00:16,770
wishing you a fantastic week ahead.
1138
01:00:17,009 --> 01:00:18,870
And don't forget to think like a pancreas.