Tag Archives: diabetes

So, how’s that clinical trial going?

May 3, 2013 – 9:17 am

Funny you should ask.

First, let me bring you up to speed: I started participating in a clinical trial back in the middle of April. Participation means wearing a Dexcom™ G4 continuous glucose monitor (CGM), and giving daily updates (keeping a diary, if you will) about glucose readings, boluses, meals, how I’m feeling that day, and a host of other things. If you want to read about it, here’s a link:
http://clinicaltrials.gov/ct2/show/NCT01767831?term=iBOLUSED&rank=1

Okay, so how’s it going? Pretty well so far. I should tell you that we’re taking a break from the study for a short time so web developers can work out some details with the website we’re accessing. Our group in this study is the first to use this system, so it was inevitable that we’d run into a blip here or there.

But I am getting first-rate information on how my glucose is trending on a daily basis, and which foods really help or hurt my BG management. Hint: being away last weekend and eating out for every meal meant mostly high readings all day Saturday and Sunday. Being home this week and eating homemade meals has meant significantly lower readings and lower variability too. Too bad, ‘cause I like eating out. But I also like cooking for myself, so life’s a balance, I guess.

Also, I’m starting to think about my answers to all of the questions I’m asked when I log on daily and give my information. I’m thinking about meals and exercise, and stress and other things that I’m giving information on. I suppose that’s part of what they’re trying to find out in the study.

At any rate, I’m still happy to be participating, and I’m finding the CGM to be more of a help than a nuisance. As the study rolls on, I’ll give you what information I can without compromising the trial.
 
 
In the meantime… in case you’re interested in participating in a trial of your own (and not the legal kind), here are a couple of places to start:

From the USA’s National Institutes of Health:
http://clinicaltrials.gov/

Also, the Clinical Trials page on JDRF’s website lists a number of helpful links:
http://jdrf.org/research/clinical-trials/
 
 
Have a great weekend!
 
 
 

By StephenS | Posted in Diabetes | Also tagged , , | Comments (1)

A whole lotta stuff.

May 2, 2013 – 9:27 am

It’s no secret that all of us diabetes-folk accumulate a lot of… stuff.

I wonder… are we the hoarders of the patient world?

I mean, we have tons of things that we rely on each day. Think about it:
 
 
For blood glucose management:
– Meters
– Test Strips
– Continuous Glucose Monitors (CGMs)
– If you’re wearing a Dexcom™, a CGM receiver
– How about a backup meter?
– Backup test strips? You know, the ones you really hoard because your insurance company doesn’t think you need backup?
– Throw a couple of extra meters in there (at least), because you know you never get rid of the old ones the second you get a new one

For insulin delivery:
– Insulin (of course)
– Syringes
– Or Pen needles
– Or a pump
– Or all of the above
– Infusion sets for your pump
– Reservoirs for your pump

Wow, look at that list! And we’re just getting started.

For treating lows:
– Glucose tabs
– Juice
– Honey (one of my favorites)
– Nutella (not one of my favorites, but to each their own)
– That year old candy from a restaurant that’s always in the bottom of your pocket (or pocketbook)

Some additional extras:
– A Glucagon Kit
– Alcohol Wipes
– All of the stuff you carry your D-stuff in (I’m not talking about the plastic grocery bag crap I carry my stuff in… I mean the cool accessories, like you get here or here.
– Documentation—A medical bracelet or necklace, a card in your wallet, information for schools, doctors, TSA screening agents, etc.
 
 
That’s a lot of things to keep track of, just so we can live our lives with diabetes. That’s it—I live a full, happy life with diabetes (and a lot of diabetes-stuff) along for the ride.

Is there anything I’ve left out? Let me know.
 
 
 

By StephenS | Posted in Diabetes | Also tagged , , | Comments (4)

Manning Diabetes Symposium, part two.

April 30, 2013 – 9:50 am

Just in case you’re wondering, I did not receive anything for attending this symposium, or for writing about it. I paid my fee to attend, I drove to Charlottesville, and I made (and paid for) my own accommodations.

DSC00782

Going to the Manning Diabetes Symposium at the University of Virginia Medical Center was an amazing experience. To be honest, I was a bit worried about being in the same room with all of the brainiacs in attendance. I was surprised when I received my badge for the symposium and saw that it had my name and my blog address on it. Instantly, I thought Oh No, they’re going to know I’m a writer! Then I thought… Cool!

I was speaking to someone about a month ago, and they were talking about being in meetings with industry executives and other very important people in their field, and wondering sometimes whether they really belonged. I said this, and I really believe it: We all deserve to be in the room. We deserve to be part of the discussion. We shouldn’t take our participation for granted, but we definitely deserve to be there. If you get a chance to attend something like this, I encourage you to go and be part of it. After all, they’re talking about things that are very important to you. Don’t you want to know what’s going on?

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Friday’s lectures began with information from three heavyweights in the diabetes research arena: Guillermo Arreaza, MD from the National Institutes of Health (NIH) and the National Institue of Diabetes and Digestive and Kidney Diseases (NIDDK); Dr. Richard Insel, Chief Scientific Officer at JDRF; and Marc Anderson, Senior Program Officer for the Helmsley Type 1 Diabetes Program, part of the Helmsley Charitable Trust. They all covered what they’re about and what they’re working on right now. Dr. Insel, in particular, gave a very compelling presentation. I’m very appreciative of what these three groups do to research and study diabetes, therapies, and new technology.

What they didn’t talk about, and what I’m concerned about for the future, is this: I have a good job, with good benefits. So I have access to new therapies and new technology when it’s available. But there are many in the USA who do not. And there are many around the world for whom a diabetes diagnosis amounts to a death sentence. I’d like to know what these three organizations are doing to study or address that.

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Then there were two compelling talks focused on genomics and diabetic complications. Jesus Flores, MD and PhD from Massachusetts General Hospital and Harvard Medical School, covered the work that his group is doing on research and analysis of genome-wide association studies of Type 2 Diabetes. In addition, he leads research for the Diabetes Prevention Program, studying genetic variants on the development of diabetes. And those are just two of the things he’s involved in.

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Rama Natarajan, PhD from City of Hope in California gave a super presentation on Epigenetics in Type 1 Diabetes and its Complications. That description sounds pretty nerdy, and it might be hard to understand, but trust me: I was hanging on every word. Honestly, if I was looking for someone to speak at a diabetes conference, she would be near the top of my list.

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Then it was on to Immunointerventions and Cellular Therapy. Presenting was Dr. Kevin Herold, Professor of Immunobiology and Medicine at Yale University; Dr. Camillo Ricordi from Diabetes Research Institue; and Dr. Matthias von Herrath, VP and Director of Novo Nordisk’s Type 1 Diabetes Research and Development Center. They each gave tons of information related to studies designed to identify potential targets for cellular and immune system therapies for the treatment of Type 1 Diabetes. I’m skeptical when it comes to this kind of research, but I’m glad that they’re all involved in it. We need to explore every available possibility, and this is one of those possibilities.

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So now, let me back up to Thursday evening. There was something called a Poster Session. Maybe you’ve heard of this, but I had never seen it before. Basically, there was a separate room containing about a dozen bulletin boards. On each side of the bulletin boards were posters containing information on diabetes studies recently completed or currently underway (including the one I’m participating in! I felt special). Next to about half of the posters were people who were leading or directly involved somehow in the studies. It was great to read about important investigations being done and then speak to the experts who were getting their hands dirty in the research. It was absolutely the best part of the symposium for me.

Here’s a tidbit: A study was done looking for a link between certain personality traits and management of blood glucose. The results? People who tested as “conscientious” has more lows and were at higher risk for lows than others in the study. People that tested as “industrious” had higher BG variability. People noted as “independent and achievement oriented” had fewer normal range BGs, had a higher BG risk, and had higher BG variability. People who tested as just “independent” had significantly lower BG variability. And people with “openness and understanding” had fewer lows, but fewer normal range values. They were at a lower risk for lows, but higher risk for highs. Didn’t see all that coming, did you?

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So that’s it. Thanks to everyone who organized and presented this sypmosium. I’m very glad I could be there. If you have any questions about any of the presentations or the presenters, please let me know.
 
 
 

By StephenS | Posted in Events | Also tagged , | Comments (0)

Manning Diabetes Symposium.

April 29, 2013 – 9:47 am

MDS

I was back in Charlottesville last Thursday and Friday. Not because of my clinical trial or for medical screenings, or anything like that. This time I went to attend the Manning Diabetes Symposium. This is a meeting of very, very smart people who spent parts of two days talking about the great diabetes research taking place in various parts of the world.

Seriously, I was the only one there that didn’t have a ton of letters after their name. In the sessions, the speakers would cover their topic then take questions from the audience, many of whom were presenters at the conference too.

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Day one was devoted partly to islet beta cell stress and islet pathology and potential targets for therapy. Basically, they’ve nailed down the development of diabetes to beta cell stress, leading to insulitis (inflammation of the islets), which leads to pre-diabetes, then destruction of the beta cells resulting in diabetes. Can anything be done to stop this process, or possibly reverse it? They’re working on it. Interesting insights from Dr. Raghu Mirmira, Eli Lilly Professor of Pediatric Diabetes and Director of the Pediatric Diabetes Research Group at Indiana University, Indianapolis.

Also speaking was Dr. Alberto Pugliese, Head of the Immunogenetics Program at Diabetes Research Institute in Florida. He spent a lot of time talking about JDRF’s nPOD program, a program that provides, without cost, rare and difficult to obtain tissues beneficial to their work in (hopefully) curing Type 1 Diabetes. The nPOD acronym stands for Network for Pancreatic Organ Donors with Diabetes (don’t know what happened to the extra D, but what the hey). Anyway, it’s a very interesting looking program, and I invite you to check it out at
http://www.jdrfnpod.org.

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Also on Thursday was a lot of artificial pancreas talk. First off, from Dr. Bruce Buckingham, Professor of Pediatrics Endocrinology at Stanford University, information on camp and in-home studies designed to try and measure reductions in nocturnal hypoglycemia related to the AP. In short, they were successful and they plan to do more studies in the near future.

In addition to that, Ed Damiano, PhD from Boston University came and spoke about all of the great AP research and trials they’re doing up in Boston. This was mostly the same talk I heard back in February at the Children With Diabetes Focus on Technology conference in the D.C. area (you can read about it here). I really liked the fact that during the question-and-answer session afterward, he made a real point of saying that artificial pancreas technology is a great thing, but it’s far from the perfect solution. I liked the question-and-answer portion with him anyway. He’s very passionate about the work they’re doing up there, and he really is an intelligent person who seemed to be very forthcoming and a step ahead of the questioners the whole time.

Finally on Thursday, there was Dr. Eric Renard, who is doing AP work at Montpellier University in France. He brought us up to date on current developments in Artificial Pancreas technology and testing, including what’s happening in Europe, where their testing is a little further along than it is here in the USA.

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After the talks, there was something called a Poster Session, which I’ll talk a little more about tomorrow because it was very cool. I’ll also cover what was presented on Friday before the end of the conference. This was a very educational couple of days and I can’t wait to tell you about the second half.

Just in case you’re wondering, I did not receive anything for attending this symposium, or for writing about it. I paid my fee to attend, I drove to Charlottesville, and I made (and paid for) my own accommodations.
 
 
 

By StephenS | Posted in Events | Also tagged , | Comments (3)

Post-mortem on Monday morning’s low.

April 24, 2013 – 11:00 am

I really wrestled with whether I should write again about my severe low early Monday morning. In the end, I’m writing this wrap-up because when something like this occurs, it’s important that I (and The Great Spousal Unit) examine what happened, and if I can, do something about it. Only then can I move on.

So here are some bullet points on Monday morning’s hypo event:
 
 
– First of all, many thank yous to everyone who left a comment here or on Facebook. I appreciate the fact that you were so concerned for my well being. Even when I’m making stupid mistakes. Read on…

– Looking back at my pump, I saw the most obvious problem… I bolused twice for dinner. Once before dinner (which I forgot about), and about an hour later. I remember thinking that I hadn’t bolused, and like an idiot, I didn’t check my pump and bolused again. Plus, my glucose was really climbing at that point, and I was very concerned after being high in the afternoon. On top of that, I bolused for a snack about an hour and a half after dinner. So yeah, I seriously stacked my boluses. I won’t ever bolus again without double-checking the pump first. I’m feeling really, really stupid about this. Really, there’s just no excuse.

– I was fighting really high BGs all day Sunday (in the 300s), with the breaks from that only coming just before meals. The morning spike was probably due to a high carb breakfast. I had a low carb lunch, but later found tubing that was clamped off by my pump’s belt clip. I changed the tubing, and worked on fighting the highs off the rest of the day. I was sinking pretty good before dinner, then had another large post-prandial spike an hour later. When I went to bed, I was still at something like 218 mg/dL, but I really had way too much insulin on board at that point.

– I slept through all of the Dexcom alarms. Or, I slept through turning them off. I don’t know. I do know I remember one alarm early on (probably around 1:00) that I heard. I turned it off, ate a few Glucolift tabs, and went back to sleep (I know, I didn’t check the BG). I don’t recall hearing another alarm. Maureen sleeps next to me, and she doesn’t recall hearing an alarm either. But she was sleeping as soundly as I was.

– Speaking of the Dexcom… I’m getting some very useful data on how my glucose trends through the day. That’s the good news. The bad news is that I’m obsessing over it too much. I don’t want to say I’m treating solely based on what I’m seeing on the receiver’s display. I’m not sure I’m ready to be honest with myself about that. But Maureen mentioned just today that I “need to stop paying so much attention to that thing”.

– I have a nice bruise on the side of my head, and a cut on my ear. Probably from falling out of bed, but I really don’t know. I guess I should be happy that’s all the physical reminders I have from this.
 
 
The final analysis: It was an epic fail on my part. I cowboyed my way through the day instead of being patient.

Many times, I’ve commented on blogs and told people in person that you can’t worry about the past. It’s only a reference point. What counts is making the most out of today and tomorrow.

Now I have to go practice what I’ve been preaching.
 
 
 

By StephenS | Posted in Lows | Also tagged , | Comments (3)