December 30, 2011

Nothing is Easy

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Some of my T1D friends in the DOC (Diabetes Online Community) have said that they think it is more difficult to be the parent of a T1D child than to be diabetic. Maybe. I doubt it but I do think being a parent bring with it a different set of stresses.

As a parent our kid's lives are more dear to us than our own. I have yet to meet a parent who wouldn’t trade places and take the diabetes to free their kid of it if they could. That just the way parenting works. No news there.

I think one of the bigger stresses that parents face is in due course letting the diabetes be their kid’s. That in part means separating our worry about diabetes from our love of our kids and letting them get on with figuring out how to manage it, in their lives, as their diabetes.

A big part of this is trying, and we all will fail at this trying, to appreciate that nobody is a perfect diabetic and so when our kids diabetes varies our job is to not freak out or worse project judgment.

That ain’t as easy to do as it is to write. Here is one way to help, find other parents and commiserate. Vent your diabetes frustration with them not at your kids and when you do that venting no blaming the kids just vent your emotions.

Nothing about diabetes is easy. Not having it. Not being a parent. The truth is the medical professionals who teach diabetes care, teach us management techniques and processes. Few teach the emotional side of living with diabetes, that is tough on everyone. So find an outlet.

This is part of what what the Diabetes Online Community community is here for. It is part of why CDW or TuDiabetes are great online destinations. I hope it is part of why you read YDMV.

Consider Jonah’s comment on this post.

If you're going to ask about blood sugar readings and the kid's a teenager, be really careful about how you ask. From my parents, I'd probably hear that as a judgment part of the time, especially if it's a high or low that they ask about, and especially because they don't do my diabetes care.

Nothing is Easy.

December 26, 2011

#TwoBits - Sorry @CharlieKimball, Thanks @MrMikeLawson

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Here's two quick bits. I spoke at a parents support group last week. There were two boys playing quietly in the back. I gave them each a Charlie Kimball car and showed them this:


http://thebetesnow.com/?p=110

Needless to say they enthusiastically reenacted the event. The moms and dads were concerned about the noise. I couldn't have been happier. Sorry Charlie, your die cast effigies  got trashed in the service of making small boys happy.

How to eat dinner with a diabetic:

http://youtu.be/fYQcBgYm9V4

Good stuff. My advice; Play with your toys and eat with enthusiasm. 

December 15, 2011

Prom King!

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So I'm sitting here heavily marinated in caffein studying for a bio exam in my masters program. I am particularly focused improving my knowledge of the endocrine system of all things. You would think that a guy involved with the diabetes online community would do at least OK in the endo section.

You would be wrong. It seems my interest in the field and what is on the test diverge. Significantly.

So, I'm sitting here sucking back coffee trying to memorize what gland, makes what hormone, to do what, to some fictitious patent named Sam, when I get a Facebook notification: I was appointed Prom King by one of my classmates. Here is the proof:


I found it hysterical. You may ask how is that possible? Simple. Bribery. I make printable documents of our online lectures to study and I share them with who ever may want a copy.  Now if I can only bribe my way into King of DProm....

... and remember all this non D endo. stuff for tomorrows exam. 

Schooling to Think Like a Pancreas - Free

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Gary Scheiner, CDE, author of Think Like a Pancreas and all around good guy is offering his Type 1 University online classes FREE in January. I think this is a GREAT deal for anyone who is looking to kick their diabetes management up a notch, particularly if doing so is part of resolution making for the New Year.



Classes on the schedule for January are:
- Mastering Pump Therapy
- Blood Glucose Control During Sports & Exercise
- Advanced Carb Counting
- Getting the Most from Your Continuous Glucose Monitor
- Weight Loss for Insulin Users
- Hypoglycemia Prevention & Management
- Strike the Spike: After-Meal Glucose Control
- Managing Pregnancy with Type-1 Diabetes
Practical Pramlintide – Making Effective Use of Symlin

Curious but not ready to commit to a full one hour class?

Think Pizza.

Gary has a short class on pizza with type 1. It runs about 10 minutes. Maybe start there and if that seems effective take another class or two in January for free.

Here is a little promo for the Pizza class:


For more visit http://type1university.com.

Full disclosure: I shot and edited these, and another, short ads for Gary. There were no fees involved but Gary did buy lunch.

December 13, 2011

@JDRF New Research #TwoBits

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JDRF announced two research initiatives today. The first is a study of seeking to Reduce Cardiovascular Risk in Adults with Type 1 Diabetes. From the release:

New York, NY, December  13, 2011-JDRF-funded researchers have begun enrolling adult patients with type 1 diabetes (T1D) in the REMOVAL study, to test whether metformin-a drug commonly used to treat type 2 diabetes-could help prevent or reduce the risk of cardiovascular complications in people with T1D. 
The REMOVAL study (Reducing with MetfOrmin Vascular Adverse Lesions in T1D) is a multi-center, international trial that will study 500 patients with T1D aged 40 or older, a patient group known to be at higher risk for cardiovascular disease, one of the leading causes of death associated with diabetes. A study from the United Kingdom has shown that people with T1D aged over 40 are at much higher risk for cardiovascular disease, including heart attack and stroke.
The second is in conjunction with the firm ViaCyte and looks at Encapsulated Beta Cell Replacement Therapy for Diabetes. (This look like an IDDP but my reading of the release is not clear. I will see if I can get confirmation.) Yes it is in fact an IDDP* From the Release:
Existing cell therapies such as islet and pancreas transplantation have the potential to cure T1D by restoring normal islet function and normalizing blood glucose levels in people with T1D. Because the number of cadaveric human donors for pancreatic islets is limited, ViaCyte’s program will provide a replenishable supply of functional insulin-producing cells. Furthermore, packaging the cells in a device (“encapsulation”) creates a physical barrier around the cells and has the potential to protect the transplanted cells from immune rejection, and may eliminate the need for chronic immunosuppressive drugs. The ultimate goal of this partnership is to help patients with T1D restore their ability to regulate blood glucose, thereby reducing or eliminating the need for constant self-management and administration of insulin.
The three-year series of preclinical studies being co-funded by JDRF will help ViaCyte prepare the information necessary to apply for regulatory approvals to study the system for safety and efficacy in people with T1D.
For more see JDRF's New Room online.

Why these matter:

Most folks living with type 1 are adults. Our first goal as parents of T1D kids is to have the grow to be T1D adults pursuing their lives interest. I have heard the figure tossed around that 85% of T1Ds are adults, seems about right. So it only makes sense to study how to keep T1D adults health.

Cure can mean a lot of different things to different people. To me, in the broadest sense it is to return the biological production of insulin. That may or may not include turing off the autoimmune response that killed off the beta cells in the first place and from the little (very little) I know of how immunity works that is no small think. Encapsulation get around that problem with magic star tech like shields that protect the Starship Insulin-producing-cell from attack by evil T cells. ... or something like that. Getting beta cells is no easy matter either. This project addresses both the shield and production of beta cells form stem cells. May the Force be with you, wait wrong sci-fi flick but you get the point and the point is Live Long and Prosper.

*For some background on IDDP you can see earlier post in YDMV. 
http://www.ydmv.net/2007/07/over-last-few-months-i-have-seen-number.html
http://www.ydmv.net/2007/10/apparently-somebody-does-know-how-this.html
http://www.ydmv.net/2007/10/5-easy-pieces.html

iBGStar Blood Glucose Meter for iPhone Now Approved in U.S.

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From the News Wire:
iBGStar blood glucometer attachment for the iPhone, developed by AgaMatrix and commercialized by Sanofi, has received FDA approval.  The iBGStar uses the iPhone as a beautiful visualization tool to keep track of glucose readings, food and insulin intake, and exercise.http://medgadget.com/2011/12/ibgstar-blood-glucose-meter-for-iphone-now-approved-in-u-s.html
Sanofi Press Release




Prior YDMV posts on iBGStar:
http://www.ydmv.net/search?q=ibgstar

December 12, 2011

YDMV Nominated at WEGO

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Award: Advocate for Another (http://info.wegohealth.com/advocate-2011)  
Reason: Bennet is a father of two type 1 diabetics and has been an exceptionally active member of the DOC since he started blogging back in 2007. He's got advocacy credentials - fundraising for the ADA and JDRF, attending social media summits for Roche and Medtronic, meeting with politicians on a state and federal level - but more than that he offers the perspective of a dad trying to help his kids become well rounded people for whom diabetes is only a small part of their lives. Despite all his work, he consistently flies under the radar - which I'm sure is by design. He never conflates his experience as a caregiver with that of his Type 1 children. His humor, passion and intelligence as - for both his family and the DOC at large - part of the invisible support structure that provides individuals with a safe space to learn and grow.

Congrats! We hope you’ll join in the excitement and take a moment to nominate your own favorite Health Activists for any of the 10 Awards and share the program with your online community.

Learn more:
Check out all the awards (and nominate others!)http://info.wegohealth.com/awards-2011/
Download our quick sharing templates: http://info.wegohealth.com/awards-sharing/
Want to help pick the winners? Apply to be part of our Judging Panel:http://info.wegohealth.com/awards-jury/

December 9, 2011

Merry Christmas and Happy Campers in the New Year

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Delaney loves Setebaid. Setebaid, diabetes spelled backwards, is her diabetes camp. There is no longer Abby Normal. She is loud, crazy, loud happy, loud, one of the crowd, loud, normal.
Held in the farm country of central Pennsylvania it is about a two hour drive from home. On the way out she is excited and has been know to make “are we there yet?” comments.  On the trip home the first thirty minutes is crazy excited and happily recounts camp adventures, typically involving much riotous and loud carrying ons. She then falls asleep, exhausted from the week of being a normal kid with other normal kids, all of whom just happen to also be type 1.
Part of camp stays with her year around. More than just texting other campers, it pop up in conversations as a touch stone. "At camp my friends and I ...." Some of those conversations now are about wanting to be a counselor in the not too distant future when she is old enough to be one. Because their influence lasts, diabetes camps matters.
Camp has been a Christmas present from the grandparents some years. If you know a grandparent of type 1 who is looking for an outside the box holiday gift maybe a week at camp fits the bill. If not and money is tight many camps also have financial assistance. 
Camps fill up. Now is the time to think about next summer. 
If diabetes camp isn’t right for the type 1 child in your life, maybe Children With Diabetes Friends for Life convention is. Either way, or both, finding a place to be the normal one is a wonderful experiance for a kid with diabetes. 
I would love to hear about your diabetes camp and why it matters. Post a comment here, link your camp blog post or share the URL of your camp. Diabetes camps are wonderful. Now as the air gets cold, it is a great time start thinking about camp next summer and to share their glory.
Need some help finding a camp near you? Here’s a few links. I welcome more such links as comments. 

The Diabetes Education and Camping Association
Or on Facebook at 
Children With Diabetes Camp Page

December 6, 2011

Love Ya / Mean It Robin

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Joy is a wonderful thing. Mostly it is a choice. First to choose to be joyful and second then, maybe, to choose to share it. 
It may even be more than choosing, perhaps joy is something one creates. I love joyful creative people. Nobody embodies that more than the woman who coined a phrase I have joyfully cribbed - Love Ya / Mean It.
We are not talking blind love here, Love Ya / Mean It means something far more significant. LY/MI is loving past foibles and idiosyncrasies. Loving not in spite of them. It is more that the things that our loved ones do to make us crazy are the very things that make them the unique individuals we love. 
It is a spectacular thing to simply love people for who they are. I try to open my heart that way. For me it is a process that requires a conscious effort. For years I would watch Robin and marvel that she was able to do it with an inborn grace. 
I got to know Robin through Disney fan sites on the internet. She wrote loving, hysterical stories of trips to Disney, warts and all. I love those stories and I love Robin.

I made some pins once with LY/MI on them. The plan was to sell them and raise a few bucks to help her have another Disney vacation, so she would write stories and we could all share in the joy laugh. At the time Robin was delivering Pizzas in frozen Maine to make ends meet and maybe save a little for a trip. When I told her the plan she simply said that she wanted them money to go to diabetes care. Delaney had just been diagnosed and she felt that was more important. So Robin.
Robin left this world yesterday. I am confident that she left it a better place for her care, her humor, and her ability to find and share joy. I pray for comfort to all the hearts she touched that will be broken by her passing, her magically blended family, her friends, maybe even the odd grasshopper that terrified her. We are all better for how Robin touched our lives.
If you would like a look into the joy Robin found and shared and maybe get a real feel for LY/MI some of her stories are on BadShoe. (Some of the links out and photos no longer work but Robin's Magic is still just as strong as ever.) In the beginning of one of her 2004 collection of stories she wrote, “Because that is all life really is, a series of great adventures.”
Thanks again for sharing your adventures Robin, 

December 4, 2011

Wonka with Type 1

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Connor played Willy Wonka this weekend in the school fall play. We are still trying to figure out how many carbs are in a chocolate river. One of the first consumes where I didn't see the pump cording. What really matters is that he is focused on what he loves, performing. 

Of the ER, the Web and Perfection

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A very dear friend is embroiled is some online nastiness over her blog, diabetes and a trip to the ER. It illustrates one of the sad things about reaching out and sharing as an e-patient, some folks thrive on being superior, and thrive on negativity.
I don’t know what it is that motivates them. I don’t much care. I do know that there is a difference between pettiness and being constructive. I know that an am fiercely loyal to my friends and I make no claim of being un-biased in my regard for them. 
I have twice been to the ER with a child experiencing serious abdominal pain. The kid in question being type 1. As a result of that insulin production inability, there was extensive conversation between the physician and us about diabetes care. This included, at the doctor’s request, detailed information about A1C. I don’t know how it was relevant but apparently it was. I therefor presume that if I had not had those number handy they would have drawn blood to calculate them since they ran a bunch of other far more costly, timely and intrusive test.   
One of the very many mind tricks diabetes does is inventing new variations on the game of This is Your Fault. Diabetes is diabolically adept at this. I haven’t met a person or parent living with type 1 who hasn’t been sucked into the vortex of this game. 
When you are in the ER and someone in scrubs asks about control, diabetes takes the game to a whole other level. It makes a great NFL two minute drill look lethargic. Diabetes covers the whole field in two second. 
So when the Doc asked about A1C, and even though I knew the numbers were good, had been good for a long time and I know diabetes rat bastard mind games, I went straight to the guilt over not being a better parent, as measured by A1C. I felt my shortcomings with diabetes, particularly my willingness to the let the teen self manage put him in the ER. 
In those seconds, diabetes covered all 100 yards, scored a touch down, two point conversion, took a penalty for excessive celebration and even while winning big, kicked onside, recovered for another TD before the clock ran out. It brought game and crushed. The game was simple, it was my failure to be a perfect diabetes parent that put my kid in the ER in excruciating pain. 
On the second trip, when they did take out his appendix, we refused to let the hospital manage his diabetes. Specifically: no change in insulin, no change in delivery method, no steroids, no kidding. The folks in the pressed lab coats with embroidered names were not happy and I had to sign a bunch of papers as a result of their displeasure. 
I am leaving out details but feel free to post comments and criticize based on your assumptions and partial knowledge of the situation. I will read them and may respond just don’t expect me to care too much about your presumptions. 
The point here is diabetes plays the Perfect Number Drill as part of the This is Your Fault game. It defines perfect quantifiably and is often supported by a medical industrial process that behaves as if it believes in a numeric definition of perfection is actually and perfunctorily obtainable. 
It isn’t and it isn’t what the goal is anyway.
The goal of being diabetic is to do what one can, to be someone who finds and shares motivation to keep doing what they can. They know that perfect numbers are not possible even while they get sucked into the Two Second Drill. Sure diabetics may get sucked into diabetes mind games. Hopefully they know how to come out of it with only a few dozen points run up in the process. The are human, they feel the emotions but they bounce back and in part they do that by sharing. They know that others are there for them and that in turn they will be there for others. 
The perfect diabetic would be one who shares imperfections as the reality of diabetes while being focused on the joy of life outside the diabetes game. Perfect doesn’t exist but there are some who play the game very admirably. 
Then there are arm chair quarterbacks. They have no skin in the game but they think they have something to say, that's fine, but why the {obscenities deleted} listen to them? 



PS: to the DOC and Kerri in particular. Love Ya / Mean It


December 1, 2011

FDA Guidelines on AP

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Thanks Scott Strumello for the email tip that the FDA has issued Guideline for Artificial Pancreas. I will be giving them a good reading and if you are so inclined here are some links:

Reuters: FDA: Diabetes device plan may help patients faster

FDA: Draft Guidance for Industry and Food and Drug Administration Staff - The Content of Investigational Device Exemption (IDE) and Premarket Applications for Artificial Pancreas Device Systems

FDA: Press Release

Three great Guys in #Two Bits

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Time for two bits I liked from around the DOC. Both are about great guys and one is written by a great guy making three great guys in two bits.

First up Scott Johnson tells the story of Medtronic's Lane Desborough. Like Scott I met Lane at the Medtronic Diabetes Advocates Forum and like Scott I was very impressed. Scott does a spectacular job of explaining why.

http://scottsdiabetes.com/2011/12/lane-desborough-chemical-engineering-diabetes


Today's second bit is me being a few days late: Novo Nordisk has extended sponsorship of Charlie Kimball's ride in Indy Car No.83. I am looking forward to seeing Charlie in the New 2012 Indy Car. Hopefully he will share a little about as he get some time in it.

http://www.indycar.com/news/show/55-izod-indycar-series/50981-novo-nordisk-extends-kimball-team-deal/

Here is to Lane, Scott & Charlie.