ADA Scientific Sessions; a Lesson in Trust

Landing at San Francisco airport, it was a fearful realization for me to watch two planes come in for a landing at the same time (as in the picture which was taken at the same airport).  It seems that they are too close together to even land safely.  There is much trust between these two pilots; so close.  Being in one of them is a tad uneasy watching them slowly descend on the approaching runway, well I find that as cool as I do fear.  I felt the same thing this week as I went down the escalator into the exhibition hall of the 79th Scientific Sessions of the American Diabetes Association (ADA) in San Francisco.

Two escalators full of people side-by-side, going down two stories right to the entrance of the runway entrance to the hall.  Trusting in the landing.  Finding out what is new, what is exciting, and what is happening around the world of diabetes is also so rewarding.  The ADA, true to form, gave opportunity for sharing, learning, and even allowing some healthy debating for the benefit of all those in our diabetes world.  An exciting flight all around I would say.

One of the most interesting bits of information, I found, was subtle but it was there none-the-less.  It seems that whoever the ‘powers-that-be’ represent, they have declared the artificial pancreas is now officially dead and closed loop, and/or automated insulin delivery, is now the preferred term.  Far be it for me to say anything but I hated the phrase artificial pancreas from the get-go and wrote about it two years ago. (Click link)
Well it seems the world now agrees.

I found it also interesting to find out at the conference that Medtronic has entered into a relationship with nonprofit TidePool, because Medtronic was supposedly the ones with an artificial pancreas. Will it be that the Medtronic 670g will slowly descend from their highly anticipated expectations. Which leads to another interesting phenomena and that is this idea of mixing and matching pumps, cgms, insulins, pens and any other devices.  More and more DYIers (Do it Yourself-ers) are utilizing devices, blue tooth, the cloud, and one young man has a start-up company utilizing devices such as Alexis, your lap top, your watch, and even the lights in your home to help you monitor glucose control.  Better Living Technologies (betterlivingtech.net) was founded by a father of a child with type one.

Gizmos, bells, whistles, and so much more to try to ease the burden of living with this disease.  At the end of the day, it will be up to each individual to figure out what will work for them.  But remember always, and be warned……..I remember distinctly that when the ‘artificial pancreas’ came out it was touted as the closest thing to a cure that there ever was…..it’s not, and it wasn’t.

Be smart…………………….and ask a million questions.

Me? I still want a biological cure……….Me? I still think we will get there.  It does not surprise me that a father of a child with t1d would invent a way to connect your watch with Alexis to control your lights to warn you of low/high blood sugars.  It does not surprise me that many advancements of late, or in process, have someone with diabetes or a loved one with diabetes involved. Maybe, more and more, these same people should be more involved with the research labs for a cure.

As I packed my bags to leave ADA, my head was in a tailspin on the amount I learned and the amount that is occurring in our diabetes world.  Thank you ADA.  Always exciting to be flying so high and coming in for a landing with trusted folks……right on the runway next to us.
I’m a DiabetesDad
Please visit my Diabetes Dad FB Page and hit ‘like’.

Parents: Look at it From Your Child’s Point of View

Me: How often does that happen?
Teenager: 2-3 times a day.

Now I will be the first one to admit that we did not have the luxury of a CGM sending  our child’s glucose numbers to our phone nonstop when Kaitlyn was diagnosed year’s ago.  What happened in the discussion I was presently engaged was that the young lady’s phone buzzed and it was her mother asking her what she was doing about her perceived low, her dad called 30 seconds later.  Both parents called and I was informed it occurs 2-3  times daily, minimum.

Really?

How low are you?
I’m not really…….70.
Did you all ever set some sort of  plan about this?
No, once I go below 80 my phone starts to ring.

Uhhhhhhmmmm……..no, I said to myself.

Unless, at some point, you want to deal  with an explosion and have an absolute revolt on your hands as the pressure cooker inside your child’s head continues to heat up every time you call them, you might want to reconsider a few things.

I get it.  Concern.  Worry.  Fear.  But how would you feel if you were contacted constantly as big brother watching becomes mom and dad asking (or texting), ‘what’s your number, what are you doing about it?’  You would not like it and I can most assuredly let you know, your kids don’t like it one bit.   One mom told me once that her child found it reassuring that she could monitor her and call her constantly.  That scenario just does not add up in my head and ring true to me.

When it comes to these type scenarios, my dear late friend Dr. Richard Rubin’s voice is heard loud and clear.
Choices……boundaries.
With today’s incredible management tools, a conversation needs to occur between you and your child. Discuss that you are their back-up.  Discuss the parameters when you will call (not so sure 70 is the number to discuss as in the scenario mentioned above) them to check that they are okay.  Use this modern technology to enlist a system where one parent calls, one parent contacts the other parent when they know all is back to normal.   Having the nurse, one parent, another parent all serving as drones and hovering over a child is too much.

Trust me.

When my oldest child (without diabetes) received his license, I made it very clear.  Here is how this works; if you tell me you will be home at 11 and your are not, I begin to  think something horrendous happened to you. I can’t help it, I’m a parent.  The freedom of a car is all yours but help me and call me and tell me when you’ll be late.  Do that and I’ll be fine.  Should you not call and you come in late, there will be a discussion.  But he now knew the parameters, the boundaries were set.  And it worked.

It’s no different with your child and diabetes.  If they want the independence to deal with this disease on their own, you WANT to help…..but all must work together.  I do not want to tell you what those boundaries are, you all set them.  It will not be perfect, there will be some adjustments; but if you’re following every move your child is making and you let them know you know every step they are making—–how do they learn?  A recipe for that revolt already mentioned.

They will get older, they will go to college, they will move away.  They will have to figure this all out on their own.  Going from being a constant drone to doing nothing is no good either.  Yet, I constantly hear from parents who tell me that once their kids left for school it was so hard to communicate with them.   That’s the key.   If you are “all over them now” you are not communicating; you are dictating.    THAT’s not healthy for you or them.

When it comes to all of these great management tools, communicate, set parameters, and balance are also tools to add into their diabetes management toolbox.  It’s their disease, help THEM own it.   Trust me, you will all be better in the long run.

I am a diabetes dad.
Please visit my Diabetes Dad FB Page and hit ‘like’.

When it Hurt Too Much to Write

Hi there.
It has been a while since I wrote, but I’m still here.
One of the happiest times in my life was discussing my articles with my mom.
She was my sharpest critic but make no mistake, she was quite proud of the forum I now have.
My mom loved to write….she always did.
When I started this column she took great pride in the work and she loved that people were responding; there was a reaction.  Mom like that people commented.  That I made some friends and that I pissed some people off.  She said writers should not be friends with everyone.  “Never forget that”, she would remind me.

And all of a sudden………she was gone.  May 19th.  The Friday before the Preakness, she was picking the horses she would instruct my brother to place her wages.  And she would go to bed never to awake again.

Shortly after she died I rattled off a few columns.

I was proud of myself for writing some well received columns.  I can do this, even though mom is gone, I can do this.  I kept telling myself.

Uhm……..nope.   Almost instantaneously, the desire to write was gone.  No matter how many times I sat at the keyboard….all I could do was stare.  A few times, tears rolled down my cheeks.

Many times writers write not even knowing if anyone is even reading…..not too unlike a radio DJ talking into a microphone not knowing if there are ten thousand listeners, or not even one.  Nothing came to me.

My mom was the most incredible person and when she would like something I wrote, she would say, “That was really just from you.  It was your heart talking.”

So I sat down at the keyboard tonight……..and I wrote.

It’s just me, a DiabetesDad……..and his heart talking.  We’ll see where it goes.
I am a diabetes dad.
Please visit my Diabetes Dad FB Page and hit ‘like’.

 

Our Changing Diabetes World…….We are no Longer in Kansas.

As I walked through the Scientific Sessions of the American Diabetes Association’s 78th meetings and exhibit hall I can only think that when we started this journey in 1992, never did I think we would be where we are today.  Both ideal management tools and research science looking to cure this disease seems to be at an all time high.  Twenty different posters/discussion talking about immunology and transplantation (cure searches); more new products than I have ever witnessed (treatment), and so many NOW interested into the psyche of diabetes.

We truly are no longer in Kansas.

Years ago there were huge players in this space and most of them were selling, improving, and touting the latest and greatest in the world of blood glucose meters. You could not walk five feet without a sales rep meeting you in the aisle and inviting you into their booth to ‘show off’.  This weekend, I had to actually look for these companies.  No doubt about it, the Continuous Glucose Monitor (CGM) is here; and will in the not-too-distant future be the norm for checking one’s blood sugar.

One comes out with a non-calibrating CGM, another follows. One comes out with ‘a better’, smarter insulin, another follows.  And underneath it all, so many are speaking with the knowledge that Amazon and Google are definitely at the trade show and absolutely in stealth mode.  Once they come onto the market, the diabetes market will be changed, once again, forever because they will come with whatever they come with done and ready to go.  Both of these companies have the money in their R&D that they do not need to sell anyone on anything “in the works”, they will come with a full-blown market sweep once they enter the diabetes world……whatever that may look like, no one knows.  But many say it’s coming.

This is all good for those of who us are parents, or more importantly those who have diabetes, and will see the results of this market crunch to be the best, the first, and/or the elimination of competitors in a product world that has become so hugely and technologically advanced,
Some tidbits:
>The new implantable glucose sensing machine is indeed an implantable chip that is easily inserted under the skin, but one must still wear a transmitter attached with removable tape, placed over the ‘under-skin’ planted device-to send the data…..so it is not as if you are eliminating wearing a device.  But to be fair and clear, the transmitter comes off and goes on very easily: it’s called Eversense, made by a company called Senseonics.
>Much concern on the psyche of diabetes in kids over the contact and connection of parents to their kids with various electronic devices.  Parents need to set boundaries because the kids will rebel (and are) because of the constant monitoring of a child’s every move.  This is a growing concern.
>Apps.  Oh my.  The world of diabetes Apps is growing and growing and every one of them swears that the patient will be better in control and their A1C will be reduced merely by using the APP being hawked.  One exception to the mass race of the app world  is BlueLoop.  Actually created by a mom of a child with T1D, it surely will be useful for parents and schools.  That said, as useful as it can be and is to personal use, it is, and should become, an ABSOLUTE “MUST HAVE’ of every camp in the country. It most assuredly will lessen a huge paper workload and time-consuming aspect of diabetes camping, and at the same time allow medical professionals to be called upon if/as needed.  If you have anything to do with a camp whatsoever, run….do not walk…..to their site and arrange a call or a meeting.  BlueLoop is a game changer.

So there will be more in the weeks to come, including a sit down interview with Dexcom’s President and CEO, Kevin Sayer,  But for now, realize that the discovery of insulin is less than a hundred years ago.  The ADA has done an incredible job of bringing the entire world to one place in Orlando this week.  I know all of these better management tools and the all elusive biological cure is not coming fast enough for any of us; but not being in Kansas and landing in a tornado of diabetes, I can tell you that I have seen a bit of OZ and the Emerald City is indeed getting closer in better management and biological cure efforts.  We all just need to continue with the courage, brains, and heart to cross that field of poppies.
I am a diabetes dad.
Please visit my Diabetes Dad FB Page and hit ‘like’.