Monthly Archives: May 2014

Another #ChampDAthletes medal winner! Meet Cecelia.

Yay!!! More medal winners!

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Our eleventh Champion Athlete With Dibetes is Cecelia Lodge. Cecelia is also a diabetes writer, and you can read her story at the blog Tutoo Sweet. In addition to being the writer of one of my favorite blogs, Cecelia is a runner.

She ran during her middle school years on the cross country team, and continued to run through high school. More recently, she started running again prior to getting married a couple of years ago.

Now stop me if you’ve heard this before, but…

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Back in 2013, she was training for another run when she started showing all the classic signs of diabetes. She received her diagnosis, spent a couple of nights in the local hospital, and then:

She finished her first half marathon one month later.

That’s pretty inspirational folks. And I really loved the e-mail Cecelia sent me. I’m going to run it in its entirety here, in the hope that it will inspire you too.

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Hi!

I came across your blog post today about the athletic achievement medals you are awarding to those with diabetes. I read a previous post of yours a few weeks ago regarding this, but I was hesitant to nominate myself because, well, it felt awkward 🙂

I guess it seemed self-serving to offer up myself as a nominee, but once I thought about it a little more, knowing maybe just one person who finds my story through this could be encouraged changed my mind. It’s definitely not about the medal. It’s about showing others who live with diabetes that might be discouraged or scared or worried to follow their dreams, no matter how big or small, and that they can and will accomplish them… and come out on the other side stronger than ever.

Anyway, with that said, I am pretty proud of my achievement. I completed my very first half marathon in November 2013- a month after I was diagnosed with type 1 diabetes.

If you are interested in reading the story, I’ve blogged about it here:
http://tutoosweet.blogspot.com/2014/02/my-first-half-marathon-part-1.html
http://tutoosweet.blogspot.com/2014/02/my-first-half-marathon-part-2.html

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Way to go Cecelia! You are a brave and inspirational person, and completely worthy of the title Champion Athlete With Diabetes.

So my advice is: Be an inspiration. Not just for yourself or your loved ones. Do it for the people you haven’t met yet, who will identify with you and be inspired too. Because they will.

To find out more and start the process of minting your medal as a Champion Athlete With Diabetes, click here or on the medal photo in the top left corner of this page.
 
 
 

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May #DSMA Blog Carnival: People trump Proprietary.

The May DSMA Blog Carnival topic has required a lot of thought on my part. And to be honest, I’m not through thinking about it yet:

This is a grassroots initiative calling for diabetes data and device interoperability — so that we PWDs have full access to our own data, can share it as we like, and can use on whatever apps or platforms we choose without being locked into some proprietary product from just one manufacturer. For the month of May, we’d like to know:

Why does open D-data & device interoperability matter to you? How might your life improve if open data were the norm?

I originally wrote about this in a story about an interoperability conference I attended back in February.

To me, the problem with “proprietary” software (or “proprietary” anything else, for that matter) is the very ideal of proprietary: To continue sole ownership of and profit from a device, or an algorithm, or something else, forever. Or at least until the next proprietary thing can be developed that will replace the original. By nature, something proprietary is designed to be kept proprietary by its owner not just now… but for generations to come. Never ever shared.

But these companies paid for their product to be developed, right? They should be allowed to profit from it, as much as they want, right? Who am I to suggest they open up their code?

I’m all for profit. I love profit. Proprietary and profit go together like bacon and eggs.

Unless you keep kosher. And there’s the rub with “proprietary”.

Not everyone is the same. Some of the people in the world are blessed with bodies that have fully functioning pancreases. Some are not, and they are People With Diabetes.

Some People With Diabetes are blessed with wonderful insurance plans that pick up a large part of the cost for a new insulin pump, continuous glucose monitor, or test strips. Some are not, and they struggle to afford even the daily insulin they need to survive.

Some people never have to worry about where their blood glucose is headed at any given time. But there are People With Diabetes who deal with hypoglycemic unawareness, something that keeps them from being able to recognize life-threatening lows and treat them in time. For these people, a continuous glucose monitor, the best one they can lay their hands on, is a daily life-saving instrument that they cannot do without.

Some people are lucky enough to have access to world-class healthcare resources, where doctors and nurses can look over them whenever necessary to help them manage those times when they might wind up in the hospital. And some people wind up in the emergency room, waiting desperately for care, because the hospital they have access to still writes down every last statistic about every patient, then manually enters all of that data into a computer, then photocopies the paperwork and files it away in a vault somewhere… instead of accessing a standard system that includes all of the patient’s medical history, their prescriptions and doses, pump and CGM data, and their doctor information, leaving doctors and nurses free to, you know, actually practice medicine.

The thing that profit-protectors fear, I think, is that we’ll suddenly go away as customers the minute they open up their platforms. But here’s the thing: I would still want to wear an insulin pump. People would still want CGMs to monitor their blood glucose. I’m going to need insulin as long as I live with Type 1 Diabetes.

Your customers are not going away, profit-protectors. But… How would the lives of both groups of people described here be changed, if the standard of medical software development was focused on the patient… No—On all patients? What other discoveries (and sources for profit) could be discovered by playing with the rest of the kids in the sandbox and making people healthier?

Understand me: Profit is great… capitalism is a good thing. But not at the expense of any of my fellow People With Diabetes. People trump proprietary every time. But don’t fear, profiteers. Open platform or not, your products, and your customers, are not going away anytime soon.
 
 
This post is my May entry in the DSMA Blog Carnival. If you’d like to participate too, you can get all of the information at http://diabetescaf.org/2014/05/may-dsma-blog-carnival-4/
 
 
 

Happy Memorial Day! Sunday Snapshots.

Today is the Memorial Day holiday here in the USA, a day set aside to honor the courageous men and women who have served, and are serving, in the Army, Navy, Air Force, Marines, and Coast Guard. That includes my niece Jessica and my niece Beth, both currently serving in the United States Army.

In addition to solemn remembrances for those who have fallen in America’s conflicts, this weekend is the unofficial kickoff of Summer here in the States. Maureen and I and Boomer the dog spent Sunday morning at Fort McHenry, located on a point in Baltimore’s harbor. In addition to being the birthplace of The Star Spangled Banner (America’s national anthem), Fort McHenry is absolutely the best, least discovered picnic spot in the entire city. Lots of open space, great views of the harbor from three sides, and a walking/jogging/bike path around the whole thing.

Instead of boring you with even more words, I’m just going to let these photos roll, while wishing you a Happy Memorial Day. Enjoy!

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Finally… As we were driving away from the fort, we caught a glimpse of a cruise ship in the distance, getting ready for its next outing. Every time I see a ship like this sitting in port, I wonder where they’re heading next. Who knows? But they’ll probably have a great time.

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Didn’t you mention something about a clinical trial?

Yeah, so I started a new clinical trial almost two weeks ago. This one, like the others, is being conducted out of the Center for Diabetes Technology at the University of Virginia, and also at UC Santa Barbara and the Mayo Clinic in Minnesota.

If you missed any of my other references, I’ll tell you straight out: This trial has an artificial pancreas element to it. That’s exactly how I’m describing it, because really, the trial is literally weeks worth of work by myself and others to prepare for about 36 hours on a closed loop artificial pancreas system. Here’s the sequence of events as I know it right now:

First, I went to Charlottesville to get screened for the study. This meant going through a physical, getting blood drawn for an A1c, having an EKG performed, the whole nine yards. We also went through the consent form (about 20 pages or so), and I submitted my medical history. This included things like confirming I was Type 1, that I’m not currently seeking treatment for things like alcohol or drug addiction, listing any hospital stays I’ve ever had, and listing out all of the medications I take on a daily basis, and in what amounts. The hardest part about these visits is that my BGs get so ramped up driving down to Charlottesville that I’m always running high when I arrive. The Jersey Turnpike has nothing on Interstate 81.

After the screening visit, I drove back home (more stress—I don’t know if I made it below 200 mg/dL all day) and waited for the phone to ring, telling me whether I had been accepted or rejected from the study. I had been rejected from two previous AP trials (different reasons), so I wasn’t holding my breath over this one. But I was accepted, and I was thrilled.

The following week I started a week of data collection by inserting a Dexcom sensor. I also started using a meter given to me to specifically be used for this trial. And I started keeping a daily diary. It included information on whether I was sick, whether I did a pump site or CGM sensor change, how I was feeling, how stressed I was about hyperglycemia and hypoglycemia, and whether I worked out that day. In addition, I needed to record times, BG fingerstick numbers, and carb counts of everything I put into my mouth. For an entire week. At the end of the week, I uploaded pump, CGM, and meter data, and faxed the daily diary info to the research team.

What was the purpose of all this? So the team at UVA could use my data to help build an algorithm specifically for me. When we finally get to the point where I’m hooked up to the closed loop system, the algorithm will work to help anticipate BG trends and carb intake, and make updates to insulin delivery as a result. Cool, yes?

So what’s next? Next are two separate admissions in the Center for Diabetes Technology’s research house in Charlottesville. I don’t know which visit will be which yet, but I do know that one of the visits will involve being on the closed loop artificial pancreas system itself, and one visit will not. The idea, as I understand it, is for the team to compare results on the closed loop system versus results from an open loop system in which I’m making decisions on my own, just like I do today.

My first admission is next week. Wish me luck! Actually, no… wish the dedicated team of researchers, developers, doctors and nurses luck. They’re doing the hard work of creating something that could be a game changer in terms of insulin therapy for people living with diabetes. Remember this: In all of these studies conducted, there have been zero overnight lows. My hope is that I can help further research into this and other advancements that are making the lives of the newly diagnosed better than I ever could have imagined at my diagnosis back in 1991. You and I are worth the effort.

I’ll try to give as much of a play-by-play account of what’s going on as I progress through the trial. Watch this space and Twitter for more.
 
 
 

Our latest #ChampDAthletes medal winner drives really, really fast.

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Our latest Champion Athlete With Diabetes medal winner is NASCAR Nationwide Series driver Ryan Reed!

Ryan drives the number 16 Roush Fenway Racing Drive to Stop Diabetes℠ Ford Mustang presented by Lilly Diabetes (how’s that for getting all the sponsors in?). This is his second year on the Nationwide circuit, and his first full year driving every week.

I was able to chat for a few minutes with Ryan over the phone last week as he prepared for his first start at Iowa Speedway (he finished 16th).

First, ‘cause I’m a guy, I asked him about racing stuff: How things were going with Roush Fenway Racing in his first full year. I congratulated him on being ranked 10th on one of the most competitive racing series in the world (he moved down to 12th after Iowa, but that still means there are about 38 drivers behind him in the standings). He mentioned how things were going well, about as well as could be expected, and how it’s great being associated with such a professional organization. He’s just trying to learn all he can so they can continue to improve. What were the goals this year? Just want to continue to do well and make everyone happy. Sounds like my life, only 150 mph faster.

Then we talked a little about diabetes. Diagnosed three years ago at age 17, what was the initial feeling like after diagnosis, and how did it then feel once he got to a point where he knew he could still do anything he wanted to (except make insulin)? Well, the diagnosis was about the toughest time of his life. Since then, it’s been about learning as much as he could so he could confidently go behind the wheel again. He learned a lot at USC’s Clinical Diabetes Program under the direction of Dr. Anne Peters. They’ve also worked with Type 1 Indy Car driver Charlie Kimball. And that, along with the support of family, was just what he needed to get his confidence back. I would also add that getting the support of one of the most successful race teams in the country means others have confidence in him too.

So… what does race day look like for a driver with diabetes? It begins by making sure his Dexcom is working properly. The receiver is mounted to the dash in his race car so he can always see how his BG is trending. He has a special way to stay hydrated while he’s driving, with a dual unit that allows him to either drink water or a high glucose drink, depending on whether he’s trending higher or lower. If necessary, there’s a dedicated member of Ryan’s pit crew that has been trained and is ready to deliver an insulin injection.

I should also mention that Ryan is founder of his own non-profit, called Ryan’s Mission, that works to build awareness of diabetes and support those living with and affected by diabetes. According to the American Diabetes Association, “The Drive to Stop Diabetes℠ campaign, through Ryan’s Mission 501(c)3, will donate 100 percent of all net-proceeds to the Association.”

Yet another example of inspirational achievements from an athlete living with diabetes. Ryan Reed, we salute you!
 
 
So… what about you? How great would it be for you to say you earned the same medal that Ryan Reed received? I encourage you to nominate yourself or the special Athlete With Diabetes in your life today.

Four simple things will mint your medal, and only the first three count:

1. The athlete receiving the award must be living with diabetes.

2. The athletic event must have taken place in the last six months. For now, we’re going with a pretty loose interpretation of the word “event”. If you feel you’ve accomplished something important to you, that’s an event. ‘Nuf said.

3. Send me an e-mail at champswithdiabetes@gmail.com. Tell me your name, name of the athlete (it’s okay if it’s you), and your address (gotta know where to send the medal). Most important, tell me what athletic goal was accomplished, and when. Extra points if you tell me how you felt accomplishing the goal. Full disclosure: I reserve the right to use your testimonial here, on Twitter, and on Facebook. I will not use your name if you don’t want me to. As always, I will never share private information.

4. When you receive your medal, it would be great if you post a photo of it around the athlete’s neck. You can send a Tweet to @ChampsWithD (hashtag: #champdathletes) or post it on the Champion Athletes With Diabetes Facebook Page.

If it’s a big deal to you, it’s definitely a big deal to me too. I want to support you, or support the Athlete With Diabetes in your life. Send an e-mail for your award today.
 
 
 

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