Glu

Glu is part of the T1D Exchange, a very significant effort to cure T1. At first glance it is a social media site but there is very much more. 

Glu is a way that you and I and every other T1D household can connect to a Type 1 database and if we choose share our information with the folks trying to find better treatments and cures. 

Your Diabetes May Vary. So Your Diabetes Needs to be Part of the Cure.

Glu is the portal to do that.

At the JDRF Research Summit in DC T1D Exchange gave a presentation that I think is a fantastic overview of thier programs. I video taped it and worked in the slides from the power point. 

I found out about T1D Exchange when they came to our endo appointment.  I have been in the beta test of the site for about a year. Glu is opening soon. Now  is a great opportunity to become involved in the cure process. I encourage everyone involved with T1D to have a look. 

Oh and on Glu I am BadShoe - Connect with me when you join.

Here is an email I was asked to forward to my friends, like you:

Greetings! 
Thank you for all your help so far in being a part of the closed beta test of Glu - a new research-based community for people touched by type 1 diabetes.  

Your feedback has been invaluable and, in the last couple of weeks, we've added Shout Notifications, the ability to track your A1c in the Health Record and the ability to view oldest or newest Discussion posts. There are many more updates in the pipeline and, in the meantime, we'd appreciate your help by encouraging your friends and family who are touched by type 1 diabetes to take part in the beta test and help build the Glu community.  

Please could you forward this email on to them or ask that they email 
info@myglu.org with the subject line "myglu" to get the invite code. They can also text "myglu" to 41411 for a registration reminder. 

Many thanks for all your support so far - we will continue to keep you informed as we approach the full launch.

Best wishes, The Glu Team

Gary Scheiner's Free Pizza Sampler!

Gary, Think Like a Pancreas, Scheiner as a short class on diabetes and pizza as a sample of the way classes at his Type 1 University work. Pizza is a challenge for a lot of folks so why not have Gary help demystify it.

Zen and the Connected Type 1 Diabetes Devices Don’t Exist

I wish they did. I have a radically different view of the technological future of diabetes care. It isn’t as much a Artificial Pancreas as it is a peace treaty between armies of robotic healthcare devices fighting over our data for their proprietary sales gain.

This treaty would make diabetes data available to, and this is the really radical part here, patients. The data will be presented in ways that would facilitate using all the information to help individuals understand how each little bit represents one of the variables that makes any type of diabetes vary.

The treaty would also facilitate patients picking the equipment and using the every day devices they already use to manage their diabetes. Now that may not sound radical but it is the opposite of what happens now. Our every day devices don’t help manage the whole of life with diabetes as our tools don’t share the little bit of information on our lives that they know. In fact they tend to guard our data as a hostage to the continued use of a given device.

I should talk about what prompted this version of my ongoing diabetes information rant. I have a RSS feed for Continua Health. Continua is, in theory, a means of connecting medical devices. Diabetes has been part of the Continua marketing line from its earliest days. Big diabetes firms are part of the Continua Alliance. Diabetes care keeps popping up in the press stories about Continua. Recently Med Gadget had a post about about a health data router for home heath care devices that said “One can imagine this device as being a central control unit for continuous glucose monitors.”

Not if one has ever used a CGM they can’t. Getting past the hurdle that no CGM is bluetooth enabled or Continua certified why would a CGM user want device with less functionality than the CGM’s own receiver? By less I mean less ability to interact like calibrating the CGM. Why would they want to carry Yet Another Device Already. (YADA)

Insulin users carry something to deliver insulin, a pump YADA, a pen YADA , a syringe YADA. They carry a meter YADA. Increasingly folks wear a CGMs YADA. Being normal every day folks they probably carry a cell phone YADA. It sound like a Seinfeld bit - Yada Yada Yada.

In case anyone is wondering those things for the most part don’t talk to each other very well. The solution isn’t Yet Another Device Already. Sadly the trend is to make for more devices and or less choice. Some may say, ‘Our pump displays meter and even CGM readings.” OK but only if we use the proprietary combination of strip meter, CGM and pump. Notice that the marginally usable food database left the pump and went into the meter with one pump so if you want the food data you gotta now carry YADA. Oh and for fun, to get the data out of any device requires proprietary software, running though a special cable, to a desk top PC, running a old operation system you probably don't use anymore.

The solution is that all the devices need to talk a common language. Continua is right about that part. Then the data can be combined to make something that resembles sense. Meter data by itself only has value in as point in time. CGMs are good at stringing those points in time together and making trends. Knowing the amounts of insulin taken would help make sense of those trends as would what was eaten (and a lot of folks enter that into a bolus wizard on their pump.) The data exist it just needs to play nice. Set the information free! Common language is the start of a treaty.

In a glorious world somehow activity, stress, hormone cycles and a partridge in a pear tree. Oh and a button to just reject freak events would be handy too.

The Continua model is data is collected sent to an electronic health record and via some mysterious process (using YADA above) doctors will have the time and be compensated for looking it over and making recommendations. If that happens, and that is one big ass if, I am sure the doctor will be using some kind of data collection device with logic tools that sift out relevant data and trends.

Why not keep that local? People living with diabetes are there own primary diabetes care giver. Cut the loop short. Get the logic into the users' smart phones. The phone they choose to use not some goofy medial phone.

Artificial pancreas fans are saying OK - why not just make the whole thing automatic? Make it all just work without any patient input. My answer is that there is value in knowing. There is value in being cognizant of the implications of what specific choice and events do to the individual. As in, wow that really work well maybe I should try to do that more often or opps that wasn’t so great how can I avoid doing the same thing again or wholly crap six hours after a really physical work out I crash and burn like the Hindenburg.

More awareness of how one live life is better than less. I think that is true on the purely physiological level and that the physical has a big impaction the emotional and spiritual levels too.

Around the DOC: Sports BS

Fall sports seasons are about to start. This brings changes to many family's lives. For those managing  type 1 the increase activity means your diabetes may vary in new and exciting ways.

Our friends at diaTribe have a great article by diabetes management guru Gary Scheiner on how to minimize the variations sports brings to the diabetes part of life. That way the excitement can stay on the field.

Check it Out.

Food TV's Easter Candy Trifecta

You have heard of a Turducken right?

Delaney and I were watching Food TV. We watch a lot, big fans. Anyway they had on a segment about Easter candy. They came up with the Easter candy version of Turducken; jelly beans stuffed into a Peep, packed inside a hollow chocolate bunny.

Now that was funny.

Wonder how many carbs that is?

DING - Oh the HORROR!

My reputation was dinged, on line, in a forum.

C’est la vie.

It seems I was a little too candid in a reply about what I put in my diabetic kids’ Easter baskets. I said, “Jelly beans, chocolate, malted milk eggs, etc.. and bolus.”

Apparently that wasn’t the correct answer. Opps too bad. That what I am doing anyway.

Candy didn’t cause our kids to be type 1. It isn’t going away because they are. I needed to learn this but it is a lesson I learned early. I didn’t know much about diabetes; OK I didn’t know jack squat about diabetes before Connor was diagnosed.

I know a lot more now than I did then. This is a lesson was learned before he was released from Children’s Hospital of Philadelphia - Kids with diabetes are kids and entitled to the joys of being a kid.

Candy on holidays is part of being a kid. Candy based holidays are important and among the many things CHOP taught ua are these two: He is trick or treating. He is eating his candy (as part of his scheduled carb intake.) They released him on the morning of Halloween with solemn instructions to trick or treat that night.

Be a kid.

Trick or treat, chocolate bunnies, candy canes and sometimes even stopping for donuts on the way home from church, even though it is a four mile detour the wrong way. They part of life.

I’ll happily take my dings.

Dr Freud - Endocrinologist and Teen Motivator

Getting type 1 teens to take care of their diabetes is a challenge. That teens see themselves as immortal isn't much of a new flash. They rebel against their parents. That they rebel against their diabetes care can be a side effect of that natural process of separation.

My friend Barry over at the Children With Diabetes forums wrote humorously about a technique he used. He brilliantly create something useful from all the "little blue pill" commercials on TV. There are long term consequences of diabetes that strike immediate fear into the hearts of even the immortal teen gods of Olympus, like needing ED pills. So Barry brought that up. Everyone has seen the commercials, teens included. He theroy was teen may not be afraid of death but needing ED pills! That is a consequence to avoid.

This is the kind of conversation about diabetes that makes forums like Children With Diabetes' so valuable and at the same time entertaining. Why not surf over and join in?

Jim Vail of the pump maker Animas Corporation gave a talk with a similarly inspiration to the teen boys at the Children With Diabetes - Friends For Live convention last July. It took a day or two to get out of my son why he had a sudden appreciation of blood swings as being as important as A1C.

It was Jim's genius and it was hysterical.

Even kids who are proud of good averages (a1c) often miss the point that wide variations in blood sugar, even with a good A1C, can have negative long term effects. Hell just saying something as dull as "negative long term effect" is enough to make their eyes glaze over. So Jim doesn't say that. He asks what is an average human being? Well since half of the human race is male and half female Jim suggests "that average is an even mix 50/50 mix of gender specific parts, one of these, one of those.... say one breast one testicle."

Simply "average" suddenly seemed significantly less important to my teen who now was preaching the idea that minimizing variance was key. Jim got through where we had failed.
Jim and his compatriots from Animas are a big part of why this convention is so successful. I recommend the convention to all T1 parents.

So here's to Barry and Jim - guys who can still think like teens, brilliantly harnessing the the raging hormones in the quest form better blood sugar control.

A Little Help From Your Friends

Just after our first diagnosis we got a great email from friend we didn't know was type 1. We were in that wildly fluctuating state of shock, denial, confusion and determination that all parents new to Type 1 experience. This friend knew that we needed some reassurance and chose humor as the way to do that. He used a brilliant strategy of injecting laughs into a time when we had precious few of them. I have shamelessly try to follow his lead since.

This is roughly the story he told.

Like any type 1 kid he did fair number shots. Being a typical boy he was curious and playful with the things in his environment.

Much to his delight he found that if he used toe nail clipper to cut the needle off the syringe it made a particularly effective covert tool to squirt water on classmates.

Now I think I made it clear by the use of the pronoun ‘he’ that this individual is male. So it should come as no shock to anybody with experience at being male that this is just one of those things that we males are genetically incapable of not taking to ludicrous extremes.

Being a male in good standing and with the particular lack of forethought that adolescences ads to the mix he achieved the kind of extremes that guys love to talk about over beers for years to come.

With a little R&T tinkering he found that if he used the toe nail clippers as small pliers he could bend a small angle on the needle to allow for even more concealed around the corner squirting.

These concealed weapons achieved great success. In an entrepreneurial society, like ours, such success is rewarded in the marketplace.

Consider the business model, the cost of good sold is negligible with insurance covering the purchase of syringes. The supply is plentiful with multiple daily injections. Only minor skilled labor was required in the transformation the medical device into the covert squirted. It is practically pure profit. Who can blame the young man for capitalizing on such an opportunity?

Initial sales were outstanding even at the low, low price of twenty five cents a squirter. Sadly anti free market regulators took notice when modified used syringes started showing up all over the school.

His unique access to the building blocks of the product brought administrative queries his way. At this point our success story comes to a crashing end. The budding business is shut down by do gooder regulators in the form of the school principal who for some odd reason objected to syringes all over his school. Our budding young businessman was sentenced to served time in detention.

There are a few morals to our story. First, obvious to all us right wing reactionaries, is that big government interference ruins the business economy. Next probably is that sharps really do need to be carefully handled. Most important for me however is that we need to laugh at diabetes like everything else.

When you're down, it is great to have a friend remind you that serious and solemn are different things.

Off the New Wires

Here's a few news releases I thought were interesting:

'I'm a Happier Person Than I Was Before'
Actress Elizabeth Perkins of Showtime's 'Weeds' Shares Her Story of Diagnosis, Treatment, and Coping With Type 1 Diabetes in Hollywood

See:
http://www.earthtimes.org/articles/show/im-a-happier-person-than-i-was-before-actress-elizabeth,256759.shtml

I think everyone with a T1 family member understands, “I felt completely overwhelmed that first year…” I also think this is brilliant and I need to learn a similar lesson about rest, “"I really learned to listen to my body and to know what I needed. And there are times I need to rest, and before I never allowed myself to do that."


Babies needed for diabetes study
Children's Hospital of Orange County is seeking infants and pregnant women to participate in a diabetes study.

To be eligible, the baby must have a parent or sibling with Type 1 diabetes.

CHOC is one of nine hospitals in the country participating in the study to examine whether omega-3 fatty acid naturally found in some foods can prevent Type 1 diabetes. The screening involves a blood test.

Pregnant women in their third trimester and infants up to five months old are needed. For more information, call 714-532-8613.

http://www.ocregister.com/life/diabetes-women-pregnant-1959955-type-infants

Newbie Advice

This is the first in what I intend to be a few short bits on tips for newbies. Hopefully I can pass on some mildly useful advice with a bit of humor to help folks new to type 1 or at least give’m a small chuckle. Comments and corrections are appreciated.



Listen up Newbie!
Newbie Advice: The Long Run
Newbie Advice I: Insulin Resistance
Newbie Advice II: Pain in the Alliteration
A Little Help From Your Friends
A Little (More) Help From Your Friends
Newbie Advice III – Why aren’t we in The Caymans?
Newbie Advice IV: Never Buy a Meter
Fatherhood and Trenches
Snickering All the Way
I know one of your fears.
Who Best to Say You Will Be Okay.

Newbie Advice I: Insulin Resistance

If you are new to type 1 I hope you like mind games. Diabetes is all about the mind games.

Welcome to the club! While you master the secret handshake, I’ll spill the beans on one of type 1’s little mind games. It has a lot of mind games so it is not like I am depriving you of a surprise by letting one out of the hat, you will get plenty of them.

I call this one “Maybe the Doctor was Wrong.” The professionals call it insulin resistance. (The professionals call a lot of stuff by funny names but that's another post.)

When that first diagnosis happens, you start taking insulin with a needle. Relatively large amounts. I’ll explain relative to what, here in a few seconds, that’s the whole trick. For now you don’t know jack and don’t know a trick is at hand. If you are like I was mostly you’re working past your needle phobia (I HATE needles,.)

You are doing what the doctor says. Doing what the doctor says is a good plan, I recommend it. You are doing it and in a few days, maybe a week, you start running low. A lot.

You get a little panicky because at Children’s Hospital they beat into you that lows are dangerous. This is all so new.., and you’re worried you doing it wrong... and you tried to do everything right... and your trying to chart trends... and your sister’s cousin’s friend says you can cure diabetes with cinnamon... and you didn’t really believe it but you put a little in the apple sauce... and NOW YOU HAVE LOWS!

WTF!

So you cut back on the insulin. You have talked to the doctors office about this and you’re using less now than before.

You’re still run low. You cut back more.

Next thing you know you are hardly using any insulin compared to what you started with. (See that is the relative I was talking about, well that and your sister’s cousin’s friend) You think, “Maybe it isn’t diabetes. Maybe it is some funny cold like thing that looks like diabetes but goes away in a week or two! Maybe there is something to the cinnamon in the apple sauce. Maybe the Doctor was Wrong!”

Sorry. No such luck. It is Diabetes.

Welcome to the club. Diabetes loves mind games, this is one of its games. Your sister’s cousin’s friend hasn’t got a clue but diabetes is having a huge laugh tricking you into thinking they may.

Here is the deal. Initially people are resistant to injected insulin. They just don’t use it well. Also the poor beleaguered pancreases is still putting out a little insulin of its own and with injected insulin, that the body is becoming less resistant to, the need for injected insulin has declined, to almost nothing. In some cases, just the long term stuff.

It doesn’t last all that long – just long enough for the mind games to really work you over. In time you start seeing the numbers go up and you slowly work more insulin into the program. The net effect may be little more than to help make you crazy.

I didn’t learn this game; really believe it was a mind game, until after the second kid’s diagnosis.

You are brilliant if you come away with from it with the idea that what worked yesterday may not work today - Your Diabetes May Vary.

More YDMV Newbie Tips: http://www.ydmv.net/2008/01/newbie-advice.html