Author: tomkarlya

I read the following statement recently:
CGM technology has reached a point where it’s now the standard for glucose measurement.
Just in case you have been living in a luxury oasis somewhere, you probably know that a CGM is a Continuous Glucose Monitor.  A device worn that checks an individual’s blood glucose constantly (different timing depending on the device).

Now whether you agree with this statement or not, it’s more important to understand the statement in relation to where we are now, as oppose to a time gone by.  CGM is a new term, and new device, in the relative diabetes timeline of events.  Kaitlyn was diagnosed on September 26, 1992, about 30 years ago.  The FDA approved the use of a CGM in 1999.  Without editorial, you now have a choice of devices to be used by a few different companies.  It’s a fabulous management tool for each person’s diabetes tool box.

As the devices in the guise of insulin pumps and CGMs battle for the larger market share by getting smaller, faster, more accurate, less painful, and just about doing everything but serve you coffee in the morning, I keep noticing something that is getting less and less attention.  Do we not want to get rid of this disease anymore?  Have we made it so ‘easy’ to live with diabetes that people just don’t care or do not believe in the “C” word anymore?  Is a cure no longer necessary?

Have people had enough of hearing about a cure and when it will be here that all the discussions surrounding a cure have just fallen into the background and have become nothing more than white noise?

Is the absolute better management tools the accepted buzz on what is important these days.  Sorry, not for me.

I think we need to stop grumbling about the “I was told a cure will be here in 5 years for the last 20 years…….” syndrome, and make sure that cure related research stays on the forefront in the minds of everyone and anyone who have the means to add financial resources to diabetes research. Privately and through the government

The world is an exciting place with so many scientific findings that are slowly being worked into the mainstream of having diabetes.  These tools are fabulous, needed, and more is always wanted.

I made a promise to my daughter, and then to my son as well, that I would stay at the search until a cure arrives….whenever that may be.  It may not be a popular belief, it may even seem like an unreachable star.  But it’s why I continue on my quest to march into hell for that heavenly cause.  You?

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

Resolution?

Usually, by the end of January, any resemblance of a made resolution of early January has disappeared in my life.  I really wish I was better at keeping them.  I always found it interesting when I hear someone with T1D say that their resolution is to ‘do better’ and lower their A1C.  Let’s be clear.  Saying I want to go to the gym more or eat less pizza is a goal that is reachable and it is based on trying to break the cycle of human behavior.  Making a new year resolution on lowering one’s A1C makes me want to say……give yourself a break.

The idea of a resolution is to do better and surely if lowering your A1C becomes a goal, I say good for you but please make sure there is not a self-blaming issue going on.  The A!C, and I have stated this before, is not a report card, it is a gauge.   I am not going to make a resolution to stay within the speed limit, am I?

Should my speedometer be higher than it should be, I take my foot off the gas and car slows to the desired speed…..and I am on my way.  Now should I have a glove compartment full of speeding tickets, the resolution may make sense but for every day life, I think not.  If you are living life where you have seen your A1C rising and rising due to some habits that could use tweaking, by all means make a decision based on that.  But if you have been doing your best, to live life as you should, and the A1C could be in a better place, work at it.  But don’t give diabetes more attention than it deserves.

When people have asked me over the years if I thought they could do x, or do y, with diabetes I almost always responded the same way; could you do it without having diabetes?  When they say, “yes”, I chime in with; “well, there is your answer”.  The same with A1C, would you be saying the same thing if you did not have diabetes?

Now I am surely not saying, here, do not work at your A1C—what I am saying is give yourself a break.  Doesn’t your diabetes get enough attention on a daily basis that to have to use up a new year resolution?  Make a new year resolution to be nicer to people while you are driving……..better yet, might be easier for some of you to lower your A1C.

Someone recently asked me If I had seen The Human Trial, and if I had any thoughts about it?  I told them that I did see it and had no real earth-shattering thoughts to be discussed.  Truth be known, I saw it a few times and my thoughts have been constant and with a single-focus.  They have been on Maren and Greg, the two subjects highlighted in the film.

You see I have lived out this film a few times in my life.

Some things, perhaps, differed slightly but the story was the same.  In 2013 I wrote, Diabetes Jeopardy Answer #29 for D-Month: Without them, We Would have No Idea what Would Work to Help Those with Diabetes.  In that article almost ten years ago, I highlight the story of my late and dear friend Kenny, along with Gary, and Rita.  All had undergone islet cell transplants.  Going where no one had gone before.  There was no movie on their lives.  There was no tugging at your heart as you watched them undergo a scientific procedure that was unproven.  No sharing how they entered a dark black hole with absolutely no guarantees what would await them on the other side. No viewing audiences to cheer them on.  It was just them. Science. Unknowns. Dreams, and that was it.

As I watched The Human Trial, my heart went out to Maren and Greg.  They are 2022 heroes and both should be treated as nothing less.  To take one’s body as a whole, and say; “…..take it.  Use it. Learn from it.”  The entire movie was one I have seen before.  What Vertex (now the owners of Viacyte) is looking to achieve is what those who have gone before have worked toward, a means to have a person with diabetes off of insulin with insulin producing cells working full time, or for a length of time, where blood sugars are normal again.  Whether in a pouch, in a device, a new line of cells, a new derivative of stem cells, but some means of insulin being produced again.

All were with some sort of immunosuppression, most ended up back where they started.  Most involved where the project failed and they ended up back on insulin.  If you’re nodding your head as you are reading that the project failed, it’s here where I want; rather; where I need to stop you.  The projects have most certainly NOT FAILED.  As I watched the film and saw Maren and Greg with the frustration as if they somehow let us down.  The pain of why “did I bother doing all of this in the first place”?  Back they went, to the worlds they knew before undergoing such a trial.  As we watched, did we just think, “Wow, too bad for them?”

When it was decided we would go to the moon and back, it was understood that we were going where no one had gone before; failure was not an option.

What The Human Trial film’s writer, Ms. Lisa Hepner, did is she pulled the curtain away on the glamor perception of research and allowed us to see just two lives that have agreed to go where no one has gone before.  To be involved with research, the very word meaning, again, ‘re’—to search.  To search again and also,  as many times as it takes to get it right.   To jump off a cliff with no means of climbing back once the leap is made.  But fail?  Oh no dear friends, I can share with you from first-hand experience that this project was by no means a failure.   Well, it does not have to be.  But that is not on Maren or Greg; just like it was not on Gary, Rita, Kenny, and so many others back over ten years ago—you see, that’s all on us.

Here’s what I know.  Back over ten years ago, no one fully appreciated that we could actually take an insulin-producing cell that did not actually belong to them and implant it in their body, and it would work.  It would create insulin.  Too much screaming and fighting about being on immunosuppression drugs as if that made the accomplishment anything less than it was, a huge success.  If the Diabetes Research Institute along with others had not done that work well over ten years ago, I can assure you that the chances of Vertex doing what they are doing today would stand little chance of moving forward.

So please join me in asking, okay, what next?  How do we make it better?  How do we make it work better and longer?  We know it works, but it needs fixing, dare I say tweaking.  Give those who need it, the money to go to the next step.  Let’s not wait another ten years.  Let’s sink every cent we can in making this all work the way it should.  Why do we give a ticker-tape parade for walking on the moon but to Maren and Greg, who gave their entire self to journey into the darkest hole imaginable, jeopardizing family, work, and possibly even their own lives………….with barely saying thank you. And if the Motion Picture Academy of Arts and Sciences (their name alone says it all joining art and sciences) does not see Ms. Hepner’s Picture as the truest example of Documentary with a nomination, that will truly be their loss.

Kenny Bernstein is a man I can never talk about without tears coming to my eyes.  I remind you all that when I asked how it felt to be able to eat whatever he wanted without the fear of diabetes after his islet cell transplant, he gave me his huge smile and he said; “It feels great, Tom.  But I didn’t do this for me. I did it for your Kaitlyn.”

Indeed he did.  Now is the time to turn on everything we can to advance what Kenny and others did over ten years ago, and Maren and Greg did more recently.  It works. The rocket takes off.  Now we have to get it to the moon and back safely.  Do THAT for my Kaitlyn, my Rob, your loved ones, and the millions like them.

I am a DiabetesDad.

With special apologies to Clement Moore.   I present a tradition……an updated, ‘Twas the Night Before D-Christmas for 2022

‘Twas the night before Christmas, when all through the house,
Not a creature was stirring, not even a mouse.
The meters, CGMs, and supplies were put away with such care,
In hopes that Santa would bring the cure with him this year.

The children were nestled from head to their feeties,
While thoughts in their head were no more diabetes.
And mamma in her ‘kerchief, she prayed for the cure too,
A dad still wonders what else could he do.

Remembering this year; and things we did see,
Like advancements and such were coming to be;
Away to the D-Community to see the latest big bomb,
Although in Europe it was great to see a brand new Dexcom.

As costs continue to rise and wallets get thin,
The fight continues for lower costs of insulin.
The community raised voices loud and concise,
At least our seniors will see a lowering of price.

It was great to see new warriors come to the government halls in mass,
Like Chicago’s 45^th, that bought in Jennifer Ladisch Douglass.
It was a hugely tight race, it was exciting, and fun,
Now a new representative, and yes, she has type one.

Others will take the lead and we will all see
Better products, more work, and good advocacy.
Better pumps, insulin, and CGMS by the score,
There’s plenty coming and we’re screaming for more.

Could it be that this COVID mess is finally fading out,
Our cries for change will get loud cuz that’s what’s it about.
But onward we go staying positive all the way,
There’s so much to do, and it all starts today.

Fighting for many and trying to be fair,
Coverage for one, coverage for all, even with Medicare.
Human trials, products, not just for our self,
Diabetes tattoos, even CGM for an Elf on a Shelf.

The war against the cost of healthcare being so high,
Will get louder still and the masses will cry.
Something will get done we’ll come near and go far,
Our voices will be heard, our actions on par.

New science will show with new trials to start,
Provention Bio may bullseye with their new dart.
If anything stalls it, it will become a crime,
The proof will come, come it will also take time.

Many stepped up to help and grabbed at the ball,
Helping some was no good, it had to be all.
Helping others and giving so very deep,
Hours and days they all went and went without sleep.

When you look outside at the fresh fallen snow,
so many are doing and so many you don’t know,
Think of those who inspire and soon you’ll see,
Things will move forward and continue to be.

The life is not the greatest fighting this disease.
Continue to ask as you drop to your knees
That things will get better and rightfully quick,
Good things to come, and not all from St. Nick.

So listen carefully as you think what needs to be done,
If you have an idea, take it and run.
Don’t leave it to others; it’ll be just a few,
“Don’t do nothing” is what you really must do.

And if you think you’re done, tired, and feeling sort of sore,
Think of your loved one with diabetes, it’ll make you do more.
And if not for you, it will be for their sake,
We won’t stop at all till they get a break.

And then, in a twinkling, one day we’ll hear on the roof,
The prancing and pawing of each little hoof.
And the only thing needed in Santa’s bag for sure,
Is when diabetes is gone because of a cure.

So we will all continue to work, the ‘where’ is up to you,
But you have to make the decision on something you’ll do.
And one day we’ll scream and exclaim, “diabetes is gone from sight,”
The Happiest Christmas ever, and to all a good-night!

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

Jean Kuczka was a teacher in St. Louis who died at the hands of a very troubled youth. She gave her life as a teacher. She knew what it was like to give back to our youth. She was protecting what she valued most, her students, and it cost her, her life.

In an instant her life was snuffed out while she was doing what she loved, teaching. She once wrote, I cannot imagine myself in any other career but teaching. Many of her former students are stating how much she meant to them as they try to come to grips with this horrendous tragedy. Jean loved to teach.

Jean was active in so many things and when her son was diagnosed she took to the roads to make a difference in JDRF’s Ride. In fact she was preparing to participate in ride #15 at the Amelia Island Ride to Cure Diabetes. Now as many people know, I have two kids with T1D and have been with the Diabetes Research Institute Foundation for a long time, and on this day, I made a donation to Jean’s Ride to benefit the JDRF. BECAUSE THAT’S WHAT JEAN WOULD WANT. Join with me.

I did this because Jean had a dream. A world without T1D for her child and the millions who wait for a cure. Her upcoming ride was a huge part of that dream and how she intended to make a difference. Her dream was cut short because of an assassins bullet. This is not about organizations. This is not about anything else but helping Jean keep her dream alive. So click this link. Join me and make a donation to Jean’s page supporting the great work at the JDRF. Wouldn’t it be great if it becomes the most amount ever raised by a rider in JDRF history! I have always said, just don’t do nothing, well…….in this case please don’t do nothing. Please just give a few bucks in honor of a woman who had, as her highest priority, our youth.

Her life meant something. Let’s show the world that the diabetes community cares. One of our own has fallen. Let’s hold her life up as an example of all that is good. Please give a few bucks to her cause. Let’s Jean’s wish of a successful ride……..be the best one ever. Thank you for caring.

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