[00:00:04] Rita Kalyani: 
Welcome to Diabetes Deconstructed, a podcast for people interested in learning more about diabetes.

I'm your host, Dr. Rita Kalyani at Johns Hopkins University School of Medicine.

We developed this podcast as a companion to our Patient Guide to Diabetes website.

If you want a trusted and easy to understand resource for diabetes or to listen to previous podcasts, please visit hopkinsdiabetesinfo.org.

That's all one word.

For today's podcast, it is my pleasure to introduce a patient with diabetes, Leon, who will be sharing his journey living with a disease, particularly focused on self-management of diabetes.

He will be joined by his diabetes educator, Eugene Arnold, who has worked with him very closely and will also be enlightening us on how they have worked together to improve the diabetes self-management over time.

Gene Arnold is a registered dietitian and nutritionist and certified diabetes educator in the Johns Hopkins Diabetes Center since January of 2019.

Welcome, Gene and Leon.

[00:01:12] Eugene Arnold: 
Thank you very much.

Very excited to be here.

[00:01:16] Rita Kalyani: 
Very excited to have you both here too. I wonder if I could ask you, Gene, to start the conversation and perhaps kick it off with a question that you think would help us understand Leon's journey with diabetes.

[00:01:30] Eugene Arnold: 
Okay, perfect.

So, Leon and I, we've been working together for over a year now.

In fun fact, interestingly, we've never actually met in person, right?

So, we've made a whole lot of progress all virtually.

So, this podcast can be a great example for patients who might be hesitant about virtual care, that they can make some serious changes and improvements without having to go anywhere.

So, there's a lot of things that we could discuss. I think for the listeners, I think it would be helpful, Leon, if you were able to share a short background as to like, you know, when you were diagnosed with diabetes, how you felt, et cetera.

And what's kind of led you to this podcast today, being a chosen patient to meet with us, if you wouldn't mind sharing your story?

[00:02:16] Leon: 
It's a pleasure really to be here and to have the chance to speak.

A little bit of my background as far as my diabetes is concerned. I've been a diabetic for over 48 years.

1973, when I became a diabetic, Johns Hopkins used to have classes for new patients.

And going to those classes, I found out that diabetes was very important.

I learned to manage my diabetes from that class.

And one thing I learned, other diabetics that I meet, I try to let them know what I've learned from those classes, as well as from Gene right now.

When I first went into those classes, I learned the fact that managing your diabetes as far as diet and exercise, a combination of both will help you with diabetes.

We also have to look at the fact that diabetes can harm you.

Diabetes can harm you to the extent that if you're not doing what is required as far as managing the diabetes, you could go blind.

And you could also lose limbs.

So that right there made me want to be a stickler to paying attention to my endocrinologists and dietitians at the same time.

[00:03:33] Eugene Arnold: 
Awesome. Appreciate you sharing that you had been to the classes previously, probably a long while ago.

You know, I think I'm very familiar with what might have been covered during that sort of program.

And I'm sure you might agree that the sort of things that you and I have been working together on might be a little different than what you talked about in the class, wouldn't you say?

[00:03:54] Leon: 
Yes.

Yeah, so a lot different, right?

So maybe you could clue the listeners into how your diabetes has changed, you know, over the last 40 years.

What's different now than what you were doing, you know, even 10, 20 years ago?

[00:04:06] Leon: 
When I became a diabetic and going to the classes and taking the information in, I don't think that I was taking it that serious.

I think some of us do that.

Some of us being diabetics, we can listen and sometimes don't take heed.

And when I say don't take heed to the extent that I wasn't following what I was supposed to do.

I wasn't really following my diet like I should.

I was doing the exercise because that's what I do.

So occasionally I would maybe want to have a taste on the weekend; I might want to take a taste.

But I'm saying that so you can understand the fact that doing those things at that particular time wasn't beneficial to me.

So now today, meeting Gene, and Gene having patience with me because of where my diabetes, it was like, it was out of control almost.

It was out of control.

Gene had to have patience and I had to have patience with Gene.

How do we get this together?

How do we get your blood sugars down, your A1C down?

And listening to Gene in reference to different ways of eating and dieting in Cobb County, you know, so all that's a combination of trying to have control.

When we had these first classes at Johns Hopkins, they were very interesting.

But at the time, mentally, I didn't really take heed to it.

And then once I start listening and taking heed to it, to the extent of what the ramifications of diabetes could be, not only to myself, but observing other diabetics that I've met over a period of time, coming in with diabetes to the extent, some of them, at the period of time that I've known them, have lost their leg.

That right there is enough, I would think, for anybody to take heed, you know, to manage your diabetes.

Not only that, listening to your endocrinologist and what he or she has to say.

And also, you know, sometimes you have to pick up and read a little bit.

[00:06:10] Rita Kalyani: 
Leon, I think you have hit the nail on the target when you talk about all the different resources that you've had and that you found beneficial to you over the years.

I'm glad to hear that you listened to your endocrinologist and that you've worked so closely with Gene.

You know, often it's hard to come and have multiple visits for your diabetes.

For those people who may not be as familiar with why you need to see a clinical educator, such as Gene, can you share what you would recommend about why it was beneficial to you?

[00:06:45] Leon: 
Like I said, for the period of time that I have been a diabetic, coming back and forth to Hopkins for different appointments and for the endocrinologist, for my dietitian, that's kind of like what you would say, repetition, you know.

And with all that, it was important to be able to do those things and be acquainted or introduced to those educators.

And this is what we have to think as far as being a diabetic is also think of the time and patient that our endocrinologist has to put in to try and keep us on straight lines.

[00:07:25] Eugene Arnold: 
Are you willing to share what your daily life is like in terms of diabetes self-management?

We've implemented a number of new technology, right?

And you're doing great.

It might be helpful for the listeners to hear, you know, what your day-to-day is like and what your routine in terms of your diabetes self-management is.

[00:07:43] Leon: 
My day-to-day management has changed somewhat from the beginning to where it is at now.

In the early stages, they didn't have an end pen.

I have an M pen now.

They didn't have G6 where you can monitor your diabetes by phone.

Before all this technology came in, you had to really pay attention to what you were doing as far as your diet is concerned.

And then you test differently.

You had to prick your fingers all the time, and sometimes that can be a little like, hey, wait, I don't want to do this today.

My fingers are sore or something like that.

But we're here now working with my dietitian and my endocrinologist, introducing this technology really makes it a lot easier.

I want to go back to something that Gene said.

Some patients are maybe kind of very coming into the hospital, but now you don't have to come into the hospital.

You can do this virtually like we're doing now.

You can control yourself if you want to, just as well as coming into the hospital to see your endocrinologist or doctor.

[00:08:51] Eugene Arnold: 
So just to clarify for everybody listening, Leon had mentioned the in pen.

It's a smart insulin pen.

Essentially what is done is the user will enter their blood sugar and they will also enter, you know, whether they're eating or not.

And it comes with a smartphone app that can help the patient have a more accurate insulin dose.

Somebody might not be totally sure how much to take, when to take it, etc.

It can help somebody remember to take a dose.

Maybe you don't remember if you took it.

You can look back at your app and it will tell you.

And the Dexcom G6, that's a continuous glucose monitor for anybody who doesn't know, and we're actually able to look at Leon's glucose readings in almost real time.

You know, these are reports that he and I will go over at every visit and find out, you know, what's working, what's not.

You know, Leon, we'd like your comment on this, but I think, you know, having that deep dive hour to hour, you know, what happened at 6 o'clock yesterday, I think that that's been a critical part of our success.

[00:09:46] Leon: 
That 6 o'clock hour was, I wouldn't say I'm going to use the word critical, but not critical.

I just want to use that to the extent that what we had to go through in order to be on track where I should be with Gene would like for me to be.

So that meant, do I eat bacon and eggs for dinner?

Or do I constantly add a little bit more, let's say, starches, which I didn't pay too much attention to, but the starches in the bread that I was eating throw me out of control.

The starches raise your blood sugar.

Talking to Gene, discussing it with him, you know, I keep eating, but my blood sugars keep going up.

Gene says,

maybe we need to eliminate 2 slices of bread or three, because I'm a bread eater.

Really, I'm really a bread eater.

Speaking on their terms and listening to him and following his advice, I noticed that there was a difference.

And another thing that I was doing, this is at night before I go to bed, with the G6 in my end pen, I would eat a little bit before going to bed.

I would eat peanuts.

Gene would sometimes say because of the peanuts, they're a little bit longer, they're a little slower than raising your blood sugar.

I was eating peanut butter crackers thinking that I needed to eat that.

But I found out, again, with Gene, that eating a peanut butter cracker would raise my blood sugar.

I used to eat three or something like that before I go to bed.

Then I found out, Gene and I discussed this, maybe we need to just eat one.

One thing, I think a lot of us being diabetics should also have that emergency kit with us right at hand, that you can reach just in case that blood sugar drops down low.

You have a piece of candy, Starburst, something like that, and maybe a peanut butter cracker, which maybe take your blood sugar up slow and not fast, because if you eat more than three, it will raise your blood sugar.

You know, discuss what to eat at dinner, and then also what to do at night, at bedtime.

What I'm saying is, because of Gene, as well as myself, it's a team.

It's a team effort.

He may be the star of the show, but I'm just a participant.

Then I have to follow the instructions that are necessary for me to be a better patient.

And that's what I'm trying to do, be a better patient, following instructions.

I hope some of the discussion that we're having will help other diabetics understand the importance of what we have to do as far as managing, and this is what it is, it's managing our diabetes.

I've been a diabetic for 48 years and have no complications.

Other doctors, when I tell them that I've been a diabetic for that period of time and no complications, they really can amaze you, you've been doing good.

That's what I want.

Other outpatients, when I say outpatients, because we are family, we are family.

We all are one; we're diabetics, no getting around it.

We're diabetics and being diabetics and because of the team that we have at Johns Hopkins Hospital and the concern, the interest that you have in us can't put it in the dollar and cents form no more than you care.

[00:13:02] Eugene Arnold: 
You've had diabetes for over 40 years, longer than I've been alive.

You still went and saw a diabetes educator who is younger than you've had diabetes.

So, what about the visits with me or visits with me were different than prior visits you've had that helped you?

Because you had been going to visit, you have been receiving care for years and years and years and years.

And we started working together and it wasn't always easy, but we've made some really, really solid progress.

For people with diabetes who might be apprehensive about seeing a diabetes educator, what is your message to them?

You know, why should they see a diabetes educator?

[00:13:36] Leon: 
It's just like going to school.

I mean, use it like that.

It's just like going to school.

We're in a stage, we're becoming a diabetic, we're in a stage of learning.

When we're introduced to an educator, previous educators, I think with Gene, the period of time that I've worked with him, it's really been a close relationship.

And like I said, you know, he'll call me up and he'll check on me.

We may make an appointment.

We'll juggle it around to his schedule, my schedule.

And I think that's important.

Gene is really close to me.

He's really, really close to me.

And he shows concern.

And see, that makes a difference too.

As a patient, you don't get that feeling from your doctor.

Wherever that may be.

I think that also has an effect on the response that one gets in trying to be cured.

If you don't have that feeling of trust of the person that you're working with.

And I have that feeling with you.

And I would think that he doesn't only work with me like that.

I would think that he works and cares for all of his patients like that.

I really do.

I really appreciate him.

I've told him this many times.

[00:14:51] Eugene Arnold: 
Thank you very much and we do our best.

[00:14:54] Rita Kalyani: 
Leon, thank you so much for sharing your experiences with diabetes self-management and how that's changed over the 40 plus years that you've had diabetes and especially benefited not only from your close relationship with Gene and the diabetes coaching you've received there, but also with the new technologies that clearly have also helped as well to manage your diabetes at home.

You talked about the emergency kit and I just wanted to elaborate on that being the glucagon emergency kit that we often recommend for people with insulin, just in case of low blood sugars at home.

We do have a video on the website about that for anyone else that is interested in learning about that.

I did just want to ask you one last question.

For those people who are newly diagnosed with diabetes, who are overwhelmed and concerned about what a life will be like living with diabetes, what advice or words do you have for them?

[00:15:50] Leon: 
My advice to those that are just becoming aware of being a diabetic is to pay attention, listen, because all this is a part.

Pay attention, listen, and understand the importance of following directions and understanding what diabetes can do to you to the extent of having problems if you don't do what is required.

I would say to those that are diabetics now and may be apprehensive of working with the endocrinologist, educator, I would just say, do the best you can.

Listen and follow instructions.

It's one thing that I learned a long time ago, and I'm going to take you back a little bit.

My mom used to say,

You have to be in a house at nine o'clock.

Well, sometimes I'm outside playing and I forget that it's nine o'clock.

So when I go back home, my mom would say, I told you to be in a house at nine o'clock.

It's after nine.

It's a minute after nine.

So you are late.

So you have to follow instructions.

From what my mother told me about being on time, that stayed with me all of my life, and even now.

When I went to high school, I had to be at school at eight o'clock.

Not a minute after eight.

When I joined the military, the Navy, you have to be on time.

So I say all that to say to my new family members as diabetics, pay attention, be on time, and follow instructions.

I just hope that from what we gather here will help other diabetics understand the importance of what we have to do as far as managing, and this is what it is, it's managing our diabetes.

[00:17:46] Rita Kalyani: 
Thank you for those final wise words, and your mom sounds like an amazing woman as well.

I'd like to thank you, Leon, for sharing so candidly your patient journey.

We truly appreciate it.

And thank you, Gene, for your exceptional care of Leon, which he clearly appreciates, and for also sharing your insights as a diabetes educator.

Thank you both for your time today.

[00:18:07] Leon: 
It's a pleasure to be here, and thank you.

[00:18:12] Rita Kalyani: 
I'm Dr. Rita Kalyani, and you've been listening to Diabetes Deconstructed.

We developed this podcast as a companion to our Patient Guide to Diabetes website.

Our vision is to provide a trusted and reliable resource based on the latest evidence that people affected by diabetes can use to live healthier lives.

For more information, visit hopkinsdiabetesinfo.org.

We'd love to hear from our listeners.

The e-mail address to reach us is [email protected].

Thank you for listening.

Be well and see you next time.