Author Archives: StephenS

Hello… I’m Stephen. I live in Baltimore, Maryland, USA with The Great Spousal Unit, Maureen. I’ve been living with Type 1 Diabetes since January 1991. I’ve been a pump user since April 2010, and I’m currently wearing the Animas Vibe pump. Also wearing the Dexcom G5 continuous glucose monitor.

I found the Diabetes Online Community in the summer/fall of 2011, and that discovery has changed my life. I started this blog in April 2012, and since then, my diabetes advocacy has continued to grow. Among other achievements, I’ve attended and spoken up at FDA workshops and participated in clinical trials.

I’ve been thrilled to serve as a facilitator for the Diabetes UnConference. And I’ve been honored to volunteer for Diabetes Patient Advocacy Coalition. You should Google both of those.

I’m currently serving as a member of the State of Maryland’s Advisory Council on Health and Wellness, where I am co-chair of the Diabetes committee. In addition, I’m part of the 2018 Reader Panel at Diabetes Forecast magazine.

I’m always searching for the perfect balance between the highs and lows of my blood glucose level and my life… always searching for the Happy Medium.

Anything you’d like to share? Please let me know… I’d love to hear from you.

I’m going to be a guinea pig.

March 19, 2013 – 9:44 am

Well, not a guinea pig really… but I am going to take part in a clinical trial. Where did that guinea pig thing ever start anyway?

Sponsored by the National Institutes of Health (NIH), the idea of this trial is “to assess an investigational simulation-based educational tool for persons with type 1 diabetes”.

Since the trial hasn’t started yet, it’s probably easier for me to tell you what I’ll be doing rather than what it’s all about right now.

When the trial begins, I’ll be starting on a Continuous Glucose Monitor (known to most of us as a CGM). It will be the Dexcom G4™, and I’ll be wearing it every single day for several weeks. During most of those weeks, I’ll be sharing data with the research team on a daily basis. I’ll be telling them about my CGM trends, my insulin usage, my diet, my exercise, how I’m feeling… the whole nine yards.

The information I’ll be giving will be used to fuel an algorithm that will be used to provide feedback so patients can potentially adjust insulin intake or make other adjustments, if necessary, to achieve optimal target BGs in the future. I guess the general idea is to see if an idea like this will achieve positive results. In the end, researchers want to find out if this tool “can be useful in diabetes management with the artificial pancreas system”.

I hope that explanation made some sense, at least. I’ve read everything about it a couple of times, and I’m still waiting for it to sink in all the way. What I can tell you for sure is that I’m very much looking forward to potentially helping other Type 1s through my participation in this study. As I go through the different phases of the trial, I’ll let you know more.

I went for my initial medical screening last week. Not having done this before, I can’t tell you that they are all the same. But I will share my experience on this occasion.

In advance of my visit, I had to complete about six pages of paperwork. Everything from doctors and emergency contacts to all the drugs that I take. You know, the usual. I also had to detail my pump’s basal settings and my insulin usage over the previous week. There were some additional questions in there that I probably shouldn’t share—not because they’re particularly personal, but because of the proprietary nature of the study. Nothing too shocking though. I also had to make sure I familiarized myself with the Dexcom™ online tutorials, so I’d have an idea of what I was getting myself into.

After I arrived and handed over my paperwork, I sat down with the clinical trial coordinator and signed a few important papers, answered a few questions, and asked a few too. After that I had a question and answer session with the endocrinologist working on the study. I don’t want to give short shrift to this part of the screening… there are important parts of the study that they’re covering in these meetings, and I was giving them information that they would need to determine if I was even eligible to participate.

Once I finished these two sessions, it was time to get my blood drawn. Again. Two weeks earlier, I had donated blood. A week earlier, I had blood drawn at my endo’s office for lab tests. And now I had to get blood drawn again for the study. It turned out that my Hemoglobin A1c result was 0.3 percent higher than it was the week before. Still in the good range, but WTF? Maybe they just didn’t take the blood out of the good arm this time. Whatever that means.

Finally, I met with the principal investigator on the trial. I got a basic explanation of the tasks I was expected to complete for the study. And we had a brief discussion of what I can and cannot blog about regarding this adventure. One of my basic rules applies here: When in doubt, leave it out. I’ll tell you as much as I’m sure I’m allowed to tell you without compromising the study.

Not having worn (or even seen up close) a DexCom™ unit, I’ll be looking for some advice on best practices. Got any ideas? Think about it and get back to me, if you can. The study will commence in about two weeks. Thanks!
 
 
 

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Recipe… From whatever’s left.

March 18, 2013 – 10:09 am

I was away for a couple of days, and when I got back, I realized that it had been a while since I’d been to the grocery store. Since it was Sunday afternoon already, I found it difficult to get motivated to do it yesterday.

So I pulled together a salad for dinner that consisted of pretty much anything that was left that I could put on a salad. This isn’t so much a recipe as it is an exercise in emptying the fridge.

This salad consisted of:

– Lettuce, of course. You can tell from the photo that it’s the last of the head of romaine too. Not the nice, dark, green stuff from when you first bring it home. Oh well… someone has to eat this.

– Shredded carrots

– The last few olives left in the jar

– My last chopped green onion

– Some sunflower seeds

– Last of the turkey lunch meat

– And the last half of a tomato

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It doesn’t look like much, but it tasted really good with a little blue cheese dressing. I’m not even going to guess at a carb count for this, but it ain’t much, I can tell you that. Mostly from the tomato and the dressing, I suspect.

What’s the laziest, craziest thing you’ve ever made from whatever was left in the house?

More about my days away when I can figure out exactly what I want to say about them.

Happy Monday!
 
 
 

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Got Hope?

March 15, 2013 – 1:29 pm

I’ve read a lot of posts and comments on blogs, Facebook, etc. in the last week or so (you know, since the Diabetes Dad/DRI/BioHub dustup) from people who don’t believe there will ever be a cure for diabetes. Trust me… I totally get where you are all coming from. At times, it seems like the cure is so far out on the horizon that there really is no horizon at all, if you know what I mean.

But I can’t go that far.

This is my affirmation.

I’m not looking for it to happen any time soon. I have no idea what form a cure would take. I don’t know if any of the research currently under way will yield any results at all.

But I know that if we never try… we’ll never know for sure. I know that if we never stand up and say, “Hey, nearly 26 million people in this country have diabetes, and over 360 million people globally, and we deserve our chance to find a cure”, we’ll never know for sure.

I dig the new technology. I’m excited about new devices that will make us safer and healthier over the long haul. I love the extra education I’m getting every day. The helpful tips from the Diabetes Online Community, the unique perspective of my endocrinologist, the amazing drug therapies that have hit the marketplace in the past twenty plus years, the improvement in meter technology and CGMs and diet and nutrition.

Still… none of it amounts to a cure.

And you know what? I’m so grateful for the fact that I’m living today with diabetes, in this era, because I have a lot more in my arsenal to fight this chronic condition than anyone who’s ever lived with it before.

Still… none of it amounts to a cure.

In the past year and a half, I’ve learned, shared experiences, met people, asked questions, made mistakes, had successes, and expanded my horizons beyond even my own comprehension and despite my own fears. I’m not sure I can convey in this medium exactly what that feels like, but it feels really good.

Still… none of it amounts to a cure.

I have a healthy skepticism of government, and medical technology firms, and big pharma, and yet I believe that the absolute power of a cure for diabetes would not, could not allow it to be kept a secret for long.

Ever hear the phrase “Prepare for the worst, hope for the best”?

I am prepared to live with my disease for the rest of my natural-born life. I’m not counting on a cure. I don’t see it in this or any other 5 to 10 year time frame I’ve ever lived in. I too look at new presentations of so-called “solutions” with a wary eye. Even disdain.

But I refuse to give up on the idea altogether. Hoping for the best means hoping for a cure. I will keep hoping for a cure, if for no other reason than to keep hope alive for the next generation.

Because the next generation deserves hope too.

Because this generation deserves hope too.

Because… while I’m bombarded on all sides by glucose issues and possible complications and the next fundraising pitch disguised as The Greatest Thing Ever, I refuse to let any of it take my hope away.

This is my affirmation.
 
 
 

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#JDRFSummit 2013, Part Two.

March 13, 2013 – 9:51 am

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There was a lot of information shared during the Summit last Saturday (don’t miss Part One), and not all of it was during the formal sessions. But I’ll begin with that, in the second part of the day, and cover some other things at the end. So if any of this starts to bore you, remember to check out the end of this post.

The second part of the day started with Roy Beck from the T1D Exchange. Roy is founder and Executive Director of the Jaeb Center for Health Research in Florida. Right now, T1D Exchange operates in three parts: A Clinic Registry, with over 65 clinics participating and 26,000 individual participants; A Biorepository, sharing and exchanging meaningful data related to diabetes; And MyGlu.org, which “is an active and diverse type 1 diabetes (T1D) online community designed to accelerate research and amplify the collective voice of those living with T1D”. Roy revealed some very interesting statistics that they’ve compiled from their participants. As in… All of the T1D Exchange participants were averaging home BG monitoring at least 5 to 6 times per day. But also in the data is the fact that none of the participant age groups had hemoglobin A1c results under 7.4. The numbers were better for those using a pump, but overall, they still averaged 7.4 or higher in all age groups. Wow.

To finish out the day were a couple of Andersons. Daniel Anderson, PhD, talked about new materials and drug delivery systems as they relate to possible islet cell encapsulation. The idea is not to create a little pancreas, but to create lots of little pancreases to start doing what the original gave up on a while ago. Drug therapy would have to come up with something that would keep the beta cells from coming under attack after the surgery to encapsulate, but still be able to detect glucose, and help foster an environment that would produce insulin.

Randy Anderson, PhD, provided a lot of detail about commercial development of drug/bio products to treat and possibly cure diabetes. He told us that there were 12 products related to diabetes in commercial development back in 2004. Today there are 94. He spoke about Roche’s Diaport idea. And his feeling is that the best hope in this area would probably be something called a Curative Hematopoietic Stem Cell transplant. His description kind of went over our heads at the table we were sitting at. Plus, we wondered about the availability of viable stem cells. But the ideas expressed were interesting, and I want to do a little more investigation about this.

Okay… Yesterday, I mentioned a few brushes with D-celebrities:

In the exhibit/vendor space, I came across Christopher Angell from Glucolift and his dad. Always ready with a smile and a handshake, I was happy to see they were doing well. But I need to remember to catch up to them early, before they sell out of everything.

I met Amy Ryan, who’s out promoting her book, Shot: Staying Alive With Diabetes. It’s the first D-book I can ever remember reading (other than one on my day of diagnosis– but that’s another story), and I’m enjoying it so far. There may be more in this space about it later.

I got an unexpected surprise in meeting Scott Strumello and Bennet Dunlap. They were in the exhibit space talking Diabetes Advocates, Diabetes Hands Foundation, and Friends for Life. Always nice to put a face with a name, and Scott asks great questions.

Oh, and I inadvertently got to meet Miss America 1999 and T1D Nicole Johnson, the event moderator. At the lunch break I realized I had left my meter in my truck. So I headed across the room since that was the general direction I needed to go. I stopped to say hello to Molly McElwee from the UVA Artificial Pancreas team, and then I turned and practically ran into Nicole. She said “Here’s a guy who looks like he knows what he’s doing”, and asked if I would snap a photo of her and a fan. So I did. I feel a little guilty about admitting this, but I sort of messed up the first one just so I would have to take a second:). Don’t ask me why I didn’t get a photo for myself. It just didn’t occur to me at the time.

All in all, a great day filled with lively discussion, some of it over my head at times, but nonetheless very enlightening. Also, the lunch talk with my table mates, who are parents of Type 1 kids, was worth the trip all in itself. It might not seem like it, but I’m hearing that T1D kids are growing up in the USA with increasingly less stigma tied to diabetes. In other words, while things are far from perfect, they’re living more normal lives than similar kids have ever lived. Here’s hoping their lives will someday include a cure for this curse upon us all.
 
 
 

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#JDRFSummit 2013, Part One.

March 12, 2013 – 9:39 am

Saturday was a beautiful, sunny early March day. And I spent it inside, at the 2013 JDRF Type 1 Diabetes Research Summit. As I mentioned in last Friday’s post, it was a day filled with lots of discussion and presentations on Artificial Pancreas development, islet cell research, and more. Also, a few brushes with D-celebrities. Many thanks to the local JDRF people who made this event happen. I don’t know how you did it with so few volunteers, but it was great.

Diving right in…

We were welcomed by Tad Wood, Executive Director of Maryland’s JDRF chapter, and a wicked bike rider. Look for him at the ride for a cure in Vermont later this year. Our moderator throughout the day was Miss America 1999 and fellow T1D Nicole Johnson, who stressed how cool it was that there were so many families in attendance (there was a separate children’s program). She talked about our “AHA” moments, and I suppose there were more than a few for some at this event.

Bill Parsons, JDRF International board member and chief of staff to congressman Chris Van Hollen of Maryland, gave the JDRF “Less Until None” speech. The idea is to systematically remove the burden of diabetes until a cure can be found. That means making diabetes less of a burden for patients, less invasive, with less complexity. That would be nice.

Next up was the Artificial Pancreas team from the Center for Diabetes Technology at the University of Virginia. They covered a lot of the ground that I’ve already covered in this space (click here for more). What was really interesting to me were two things: One, I enjoyed looking around the room and watching the look on people’s faces when it clicked and they finally understood what all this Artificial Pancreas stuff meant. Two, the part about the remote monitoring that I wrote about in this post. When parents saw this, there was an immediate reaction. In short, parents want this like now. Later, at the question and answer session with the panelists, they were asked if they had contemplated releasing the remote monitoring prior to any AP approval. It wasn’t said, but I’m thinking this is not happening right now, even though it would be great. First, for it to work the way it’s designed right now, it requires an AP device, which hasn’t been approved yet. But, I’m wondering… could there be an app for that in the future? In other words, the CGM data uploads to an app on your mobile phone in real time, and the information is made available in a secure way through mobile technology. In theory, it sounds doable to me, but it would also require resources from the AP project to work on this piece alone. My guess is that JDRF is not funding something like that right now, but again, it would be great.

Also included was a talk from clinical nurse trial coordinator Molly McElwee, another Type 1 who spoke about her own experiences working on the project. She spoke about her worst day with diabetes (she described her talk as her own “Diabetes Naked”, in front of everyone). She took the low she experienced from that day, her pump and CGM data, and they put it through an AP algorithm at the center. In the algorithm, she would have received an alarm 37.2 minutes prior to hitting the 70 mg/dL mark, telling her she was trending down quickly. How cool is that?

Now, let’s get into islet cell talk. Chris Newgard, PhD, spoke with a great deal of passion about the research that’s being done to both discover why islet cells die in people with Type 1 Diabetes, and why it’s been so difficult to figure out how to successfully implant islet cells and make them expand. He feels they’re getting closer, and there are a few possible ideas being investigated. Including something that looks a lot to me like the BioHub thing that everyone was complaining about last week. I have my doubts, frankly… but even if islet cell transplantation or expansion of functional cells doesn’t happen, they’re still learning an awful lot about this important aspect of Type 1 Diabetes.

All right… I can see that this is getting long already. So there will have to be a part 2, hopefully tomorrow. So much to share with you.
 
 
 

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