Tag Archives: diabetes

People are talking: #JDRFSummit Part two.

March 4, 2014 – 9:48 am

Saturday I was one of the many at the extremely well-attended JDRF TypeOneNation DC Research Summit, in suburban Washington. Lots of updates on research all over the diabetes spectrum, and a chance to interact with some of the attendees. Including one I was able to meet for the first time. There was an awful lot packed into one day, so I’ve broken it out into three days of posts. Yesterday, I covered the morning’s presentations. Today, I’ll cover the afternoon talks. On Wednesday, my interactions with summit attendees and a DOC meetup!

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As I said above, there were lots of presentations Saturday. Before the main talks of the afternoon, there was a passionate advocacy update from Cynthia Rice, Senior VP of Advocacy and Policy at JDRF. To this observer, it seems like JDRF is working hard to expand their advocacy. Children’s Congress, Promise meetings with legislators, multiple outreach efforts. JDRF is advocating for all of us living with diabetes. Want to get involved? It’s easier than ever. To sign up, visit the JDRF Advocacy website here. Also, you can get advocacy updates on your mobile phone by texting ACTION to 53731 (JDRF1). Simple, yes?

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After that was one of the best presentations of the day. Dr. Linda Gonder-Frederick, Clinical Director of the Behavioral Medicine Center, part of the University of Virginia Health System. In her talk, she looked at diabetes from a psychological perspective. I remembered meeting her in the course of one of my clinical trials last year. She seemed smart then, and smarter Saturday. A couple of the things she had to say:

“It is well documented that diabetes is the most difficult condition for patients to manage.”

“Think of diabetics like a snowflake… no two are the same.”

According to Dr. Gonder-Frederick, there are four coping strategies that serve PWDs well: Information gathering, problem solving, empowerment, healthy acceptance, dealing with negative emotions, and social support and appropriate help seeking. It’s not a surprise that rates of depression in people with diabetes is almost twice that among non-PWDs. Critical periods for psychosocial risk in PWDs include diagnosis, any time there’s a real change in care or treatment, and the transition from a pediatric medical support system to adult medical support. In fact, she told us that this is the time when most patients get lost in the system. The transition from pediatric to adult care is that hard sometimes.

Honestly, I’m not doing her talk any justice. If you get a chance to hear Dr. Gonder-Frederick speak, I highly recommend it.

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The next two presentations were very scientific, and to tell you the truth, there was a lot of information given in a short amount of time. Let me see if I can give you the highlights from talks by Dr. Eugene Brandon of Viacyte, and Dr. Stephen Miller from Northwestern University Medical School.

Dr. Brandon covered the things that Viacyte is working on in the field of beta cell encapsulation, and how their research is going. The good news is that encapsulation human trials are scheduled to start this year.

Dr. Miller spent some time going over important research into nanoscience and immunology. Specifically, the difference between immunosuppressants and tolerance therapy. The appeal is the hope that immune tolerance therapy could be used to treat autoimmune disease, so (possibly) Type 1 diabetes could be averted altogether.

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Finally, we got to hear Kelly Close of Close Concerns and Diatribe fame. Kelly’s an amazing advocate, and she’s been involved in artificial pancreas trials in both Boston and Virginia. In fact, she was a participant in the study I got booted from in January. It was great listening to her talk about what closed-loop testing is like, and mostly, what it feels like. That’s really what I wanted to hear, and I wasn’t disappointed. It was fascinating listening to her talk about the dichotomy of being connected to medical devices, but feeling normal throughout the night. No lows or highs to sap her energy or make her feel hung over the next morning. She also gave a great roundup on where diabetes technology stands today all over the world. Which is pretty exciting to say the least.

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If you’re thinking it was a full day, you’re right. And that was just what was on stage last Saturday. Wednesday, we’ll talk about my interactions with a couple of the summit attendees, and my meetup with one of my favorite writers.
 
 
 

By StephenS | Posted in Events | Also tagged , , | Comments (2)

People are talking: #JDRFSummit Part One.

March 3, 2014 – 10:13 am

Saturday I was one of the many at the extremely well-attended JDRF TypeOneNation DC Research Summit, in suburban Washington. Lots of updates on research all over the diabetes spectrum, and a chance to interact with some of the attendees. Including one I was able to meet for the first time. There was an awful lot packed into one day, so I’m going to break it out into three days of posts. Today, I’ll cover the morning’s presentations. Tomorrow, the afternoon talks. On Wednesday, my interactions with summit attendees and a DOC meetup!

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The day began with a talk by Bethany Salmon, who is in charge of translational development for JDRF. What does that mean? I was wondering that when the talk started. What I found out was that it means the development and commercialization of therapies for people with diabetes. Those therapies include Artificial Pancreas, smart insulin, beta cell encapsulation, prevention, and restoration of functioning pancreatic beta cells. That last thing, Bethany reminded us, is JDRF’s definition of a cure. Any of the other therapies would be great developments, but they would also mean JDRF is still going to work for a cure.

Anyway, translational development basically means the JDRF team works to identify and accelerate projects. If they see something promising, they’ll provide matching funds for research. What happens then? They hold quarterly meetings with recipients of funding to make sure they’re on target. Recipients of JDRF research grants are held to specific performance milestones for their projects. It’s good to know JDRF is being responsible with the money they’ve raised over the years.

Ms. Salmon also shared a short JDRF video that spoke to me. To me, it’s the perfect video to show at gatherings like this, where some of the people in attendance may be feeling like the diabetes wheels are spinning in place, and they need a fresh pick-me-up. I’m happy to share it with you here:

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Next was a great presentation from Dr. Trang Ly, who was filling in for an ill Dr. Bruce Buckingham, talking about closed-loop testing, and studies to try to help lower instances of hypoglycemia at night. Dr. Buckingham and Dr. Ly work in pediatric endocrinology at Stanford University. I’ve written before about the work they’re doing out there, and Dr. Ly gave us an update.

She talked about research on a low-glucose suspend system like the Medtronic 530g with Enlite. They found that LGS can prevent severe hypoglycemia in most cases, in both children and adults. Makes you wonder why Med-T didn’t try harder to get pediatric approval from the FDA for their device(s).

They’ve done a series of tests (in Australia, if I remember correctly) on predictive low-glucose suspend, where the system predicts a hypo, then shuts off the pump. They started testing with adults, then tested with teens, and progressively younger kids. They start testing with 3 to 6 year olds soon.

She also gave a recap of diabetes camp testing out in California. And she mentioned two studies starting soon: One with kids at Camp Jordan in Virginia, and bionic pancreas testing using a bi-hormonal pump up in Boston. Most moving to me was early on in her presentation though. She had handwritten answers from kids who were asked the question “What do you fear most about nighttime hypoglycemia?”. The answers: “Waking up in a coma and dying”, and “Not waking up”. Those are typical responses… but when you see them in the handwriting of children, who should never have to bear that kind of burden, it really hits you where you live.

And while I’m at it, let me pass along a great big thank you to children and their parents who agree to take part in this crucial testing of closed-loop systems.

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Then it was Dr. Roland Tisch, who’s working out of the University of North Carolina, trying to see if there are options for reversing diabetes (other than, you know, cinnamon and okra). There was a lot covered in his short time on the podium, so you might want to check out his presentation when it gets posted online in a week or so. In short, according to Dr. Tisch, there are three keys to establishing remission in patients with diabetes: 1)Eliminating pathogenic T-cells in islets, 2)Increasing Treg cells to maintain long-term autoimmune protection, and 3)”Normal” immunity has to remain unaffected. In other words, fixing one part of our immune system doesn’t help if the therapy breaks another part of it.

Look for Dr. Tisch’s presentation later to learn more about pathogenic T-cells and Treg cells and why they’re important discoveries, and important parts of the research they’re doing.

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All of this happened before lunch on Saturday. No wonder my head was spinning! Tomorrow, I’ll try to cover the afternoon speakers, and on Wednesday, more about the human interaction portion of this terrific event.
 
 
 

By StephenS | Posted in Events | Also tagged , , | Comments (2)

What’s your fantasy dual-chamber pump hormone?

February 28, 2014 – 9:46 am

Related Post: What else do you want?
 
 
We still have about three more weeks of winter left here in the USA. I don’t know about you… but I could really use a healthy dose of Spring right now.

That has me thinking: I know that dual-chamber pumps have been in development for some time. I believe the idea is for one chamber to be able to pump insulin, and the other to pump glucagon. Or in some cases, the second chamber would pump amylin, which is a hormone designed to help us with gastric emptying.

So… what if I could just, at least for a little while, hook up a little Spring in my hypothetical, dual-chamber apparatus? Late Spring, just after you throw that coat off for the last time, but before it gets blazing hot. Change into your shorts after work, hang out on the back porch all night kind of Spring.

That would be very nice. What else would I like to have infused via my dual-chamber gadget?

Maybe something that could help take the edge off of remembering the depressing episodes of my life. I already lived them once. I don’t want to ever think about them again. Or relive them. Come to think of it, maybe Spring is the perfect antidote for that. Or serotonin. That might help me remember a few things that I seem to forget these days too.

But serotonin couldn’t give me the warmth that I’m looking for. So I’m still looking for Spring in a bottle vial reservoir.

I could certainly use something to motivate me to get to the gym at 5:30 a.m. I’m going, but I’m still dragging myself out of bed to get there. I don’t need anything like an amphetamine. I need something that will make me feel good about getting up and going, but not a performance enhancer.

And I would love something that would help me give exactly the perfect answer to every question, whether it’s diabetes-related or not. Aside from the confidence builder that would be, think of all the money I could make on Jeopardy! Though technically, the questions are answers on Jeopardy, and the questions are answers.

Where was I? Oh yes…

Those are just three things I thought of really fast (‘cause, you know, it’s Friday), that could be really great go-withs to infuse in a double-barreled insulin pump. What’s the fantasy hormone you’d like to include in yours?
 
 
 

By StephenS | Posted in Out Of the Box | Also tagged , | Comments (1)

Like these links.

February 26, 2014 – 10:09 am

First, a couple of great deals from companies run by PWDs (People With Diabetes). Then a couple of posts that you’ll want to pay close attention to.

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Ethan Lewis at Level Foods has let me know that his Level Life Protein Bars and Shakes have made it to the shelf in your local Target store! He says you can find them in the Diabetes aisle. I don’t know what a Diabetes aisle really is, but I’m thinking you’ll find them near the pharmacy.

But wait… there’s more! You can pick up a coupon for $4.00 off your purchase by clicking here.

But wait… there’s more! Ethan’s also holding a contest on Facebook this month. Find your Level Life products on the shelf in your Target store, take a photo, and upload it to their Facebook page. Once you do, you’ll be entered into a contest that includes weekly prizes like a $50.00 Target gift card and Level Life hoodies. Still a couple of days left… get to Target and remember to take your phone.

Also: Be sure to watch this space for a Level Foods giveaway in the near future…

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From Christopher Angell at Glucolift comes great news: They are now fully stocked again with the best-tasting, low-chalkiness glucose tabs anywhere. You can get all flavors, in all configurations. And if you order soon, you can get 20 percent off any order over 50 dollars by going to BuyGlucolift.com and using the coupon code GLISBACK.

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Allison at The Blood Sugar Whisperer wrote the quintessential definition of what advocacy is all about. She reminds us that advocacy cannot be quantified. It doesn’t have to be flashy:

“Being a diabetes advocate means making a difference in the life of someone with diabetes. There’s no qualifier on that.”

So true, so true. If you haven’t yet, I encourage you to go read what she has to say. See if it doesn’t charge you up.

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C, writing over at C’s Life With D, is a Registered Dietitian and a Certified Diabetes Educator. She’s starting to wonder why a lot of people online seem to be making sport of bashing their CDEs.

She has a point, and I’ll even go so far as to say there’s a lot of Diabetes Online Community bashing going on about healthcare professionals in general.

I think if you read her piece, you’ll start to see why we all (myself included) need to cool our jets.

Like with the Miss Manners dustup last week, it’s important (at least for me) to remember that we should all be allowed to say what we want about a newspaper columnist’s advice, or about our professional care team. But with great freedom comes great responsibility. Try to mentally put yourself at a party where both sides of an issue are present. Remember that whomever you’re speaking to now has the opposite point of view of the person you’ll be speaking to in five minutes. What do you say? What will you say if you have five more minutes to think about how you’ll say it?

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It’s a busy week here. If you’re in the Mid-Atlantic, don’t forget about the JDRF Type One Nation DC Research Summit taking place in Bethesda, Maryland on Saturday. Find out more and register at jdrfsummit.org.

Happy Wednesday!
 
 
 

By StephenS | Posted in Like these links | Also tagged , , | Comments (0)

We’re not EVER perfect.

February 24, 2014 – 9:26 am

I feel kinda silly posting this on the same day that Scott E. posted something very similar over at Rolling in the D… But, what the hell? Here it is.

But be sure to go over and read Scott’s post too. You’ll probably get more out of it anyway.

This story is nothing that should shock you. But it’s something that happened yesterday, and I think it’s an important story to tell.

I suspect I don’t get a huge amount of viewers here, but I do recognize there are some. Somewhere between some and huge is where my viewership is right now.

Anyway… It’s easy as a writer, and the person who basically oversees everything that gets posted here (after all, it’s my blog)… It’s easy to make everything about my life seem perfect and special. It’s even easy to make it seem like those moments where I’m not perfect are not exactly my fault.

Well, yesterday, I woke up, remembering I needed to change my infusion set. I had about 5.5 units of insulin left in my reservoir. Of course, those of us with a Medtronic pump know that 5.5 units means that you really have (probably) many more units than that left.

Knowing this, I had breakfast without changing my set. And I had a couple of chores around the house to take care of, so I didn’t change my set after breakfast either. I also didn’t change after getting my hair cut, or even after lunch. It wasn’t until we were nearly out the door headed for a movie that I finally remembered to do my set change. At this point, my pump was probably showing something like this for five hours or so:

DSC00856

So apparently, just in the nick of time, I finally got that set change in. The reservoir had a little insulin left, because it was still pumping, but once I pulled it from the pump I could see there wasn’t much.

It wasn’t an epic fail, of course, but it’s something that happens in the course of day after day, year after year living the diabetes life. You’re bound to forget something now and then. You’re likely going to make a mistake once in a while. How do I know this? Because I make mistakes too.

Don’t let it get you down. Don’t let it make you feel like someone you read occasionally has his shit together, and you don’t. Because that is simply not true.

Instead, just pick up and move on. With diabetes, it’s good to be able to remember things. But don’t spend any time feeling bad about one thing or one day. Don’t ever let something from yesterday cloud the joy you’re seeking today.

By the way, we did make the movie. Monuments Men is a good one. Great acting all over the place.
 
 
 

By StephenS | Posted in Additional Inspiration, Diabetes | Also tagged | Comments (7)