Update on One of Our T1D Kids…..One Who REALLY Gets it Right!!!

JesseThe village kids call him ‘Alto’.  The Spanish translation is tall.  But Jesse is much taller than just to play basketball.  Jesse is much taller because when many people might shy away from this type of opportunity, Jesse embraced it.

Embraced it indeed.

Being in a village called Juan Dolio is not exactly the quick pace of New York.  This village, on the southern coast of the Dominican Republic, is far away…..from……well….everything.  Where coconut palm trees grow in the sand and the water is bluer than we know.  But also where 99% of the villagers show up in clothes that are torn and without shoes; seeking medical care coming from houses with clay floors.  In 1998 Hurricane Georges destroyed the entire village.  Little was left to even rebuild to the little resort community it once was.

Jesse is part of a hand-picked group offered to come to this area to help.  It’s not mandatory and I’m sure Jesse would rather be in his apartment back in Buffalo where he attends school and will graduate in June with his RN BSN.  But Jesse is on a mission.  A mission with Missionary Score International to help others, including medical care, and that’s where Jesse comes in.  He is in that field and is very helpful to this small community where medical care is a huge luxury……..of need.

I have known Jesse for some time.   He’s not actually one of my kids, but he is one of all of our kids.  One of our kids with type 1 diabetes making a difference.  He is your regular 23 year-old and does what many young man his age like to do.  He’s not perfect; who was at age twenty-three (surely not me)?   But Jesse is also one of those young men who act beyond his years and quickly steps-up when someone needs help.  Having T1D since age 9 makes you aware pretty quickly in life that fair is a word that can surely be/work against you.  Jesse would have none of it.  Not only does he live life to the fullest, he gives back when so many more say, I’m just too busy.

So for this week he gives of his time, voluntarily, to help those who are less fortunate than he, and who live life as only he may have read about when he was younger.  People who have less and need medical care more.  And even when he is done for the day, he finds time for a basketball game with the village kids.  Where he allows the six who face him alone, to score ten quick points before he beats them 11-10.

Jesse understands fun, work, volunteerism, giving, enjoying, long hours, quick rests, laughter, and balancing diabetes; and many, including myself, are very proud of his efforts.  A tall order for some, but not for a young man the village kids……..call ‘Alto’.

I am a diabetes dad.

Please visit my Diabetes Dad FB Page and hit ‘like’.

 

NEWSBREAK Report: T1D in Children Rising; and a Woman You NEED to follow “Closely”.

Going upKelly Close’s DiaTribe published a very interesting finding based on a recent study in Diabetes Care……it states (according to DiaTribe);
“……..more US children and adolescents have been diagnosed with type 1 diabetes in recent years: the disease’s annual prevalence in a large, insured population increased 53% between 2002 and 2013, from 1.48 to 2.33 cases per 1,000 people. The study used data from insurance companies to survey the rate of diabetes in ~10 million US children and adolescents younger than 18 years old, so it does not tell us how diagnoses of type 1 may be changing in adults. It is not clear why type 1 diagnoses are increasing so rapidly.”

Now if you look at those stats a little more closely, it used to be that 1.48 cases per 1,000 were diagnosed with type 1 diabetes (T1D), and the new study shows that it is now 2.33.  Now in dealing with percentages, that means that almost an additional person per 1,000 cases is being diagnosed with T1D.  THAT’s alarming.

You can read Kelly’s full assessment/article by clicking here.

Click the link and read her article; pay close attention to her conclusion.  It will shake your cage and reinforce what many have stated for some time.  And if you do not follow her, you should.  Kelly has an incredible talent to call things as they are, usually with little sweetener (pun intended).

If you do not know Kelly, I can tell you that she is a shoot-from-the-hip kind of writer; and probably one of the most knowledgeable people on what is happening in our diabetes world.   Little, if anything, gets by her and/or her team.  She has taken her battle with diabetes (of over 25 years) and her desire to know every/any-thing she can, and after she ferociously learns for herself, she graciously shares with the world what she finds.

Kelly is also the same person who meets you with a warm smile (one of the biggest smiles I know) when you see her at one of the many conferences dealing with diabetes, taking place annually.  It’s not ‘unusual’ to see her and/or members of her team running from one session to another to capture, for us, what is going on.

Diabetes.  She writes about all aspects of diabetes.  ALL.  You may not agree with everything that is written, and truth be known, you shouldn’t.  I have often felt that if you want to be amused, you read the comics; if you want to learn, read writers who challenge you to think and to learn for yourself.  Writers should open a dialogue; and Kelly is the master.

So if you are always trying to figure out what is real and what is not; what are facts and what is rhetoric; what is the truth and what is mere fabrication….give yourself a New Year’s gift and follow Kelly’s DiaTribe more closely.  In a few months you will feel more educated, and in the know, about what so many merely think they know.

I am a diabetes dad.

Please visit my Diabetes Dad FB Page and hit ‘like’.

 

 

A Message for You!!!!

Happy New Year 2016A really good friend wished me a happy New Year and stated that the hope was that all my wishes would come true in 2016.

Interesting concept.

I found myself asking if I had ‘all my desires’ as a bucketful of wishes or is my wish the same as it was on September 26th, 1992, and only to be doubled on March 20th, 2009.  The same wish every time I blow out my birthday candles.  The same wish anytime I wish upon a star.  The same wish I have every time I break a wish bone.  The same wish in my nightly prayers.

A cure, for my two children.

It’s a promise I gave my kids and it’s the foundation for everything I do.  I’m deeply involved in this diabetes world.  I wish I was not, but I am during almost every minute of every day in some shape or form.  I’m energized by this diabetes world around us.  And in as much as I believe in the efforts of the Diabetes Research Institute, being involved as I am, also allows me the privilege of seeing so many wonderful things out there which I see with an open mind with a drive to learn more.

I see what I see, through your eyes as well.

I thank you for that.  You teach me so much.  You have opened my eyes to so many worlds of research, initiatives, efforts, education, management tools and energy to make this diabetes world palatable that I, otherwise, would not have in my life.  Your energy drives me.  Your knowledge challenges me.  Your passion humbles me.

Thank you for allowing me to share in your life.  We are in this together and our one and only competition must always be; diabetes.  To make a difference in this diabetes world and to just ‘not do nothing’.

I wish all of you the best 2016, and may it take you one step closer to whatever it is you seek in your life; for you, for your family, and for those you love.

Happy New Year!

Much love, respect, and admiration always,
Tom

I am a diabetes dad.

Please visit my Diabetes Dad FB Page and hit ‘like’.

 

Tyson’s Family Shares a Story on Saving a Life……..Are you ANGRY ENOUGH…….to Help?

Tyson IrbyAs this year ends, I am still driven by how far this year has taken us in the battle against missing the diagnosis of T1D and the diagnosis while in DKA.  It’s a battle that can be won.  And THAT battle is a series of wars in every state.

What can you do?  I believe this battle can be fought on many fronts and with many, many, willing and eager participants.  If I start to list them, I will miss some and I DO NOT want to do that, but know they are out there.  They are out there advocating, spreading the word, and creating resources for others to use.  The question remains and will always remain, what will YOU do about it?

Now to be clear, if your plate is full and you have the initiatives you find important in this diabetes battle have ‘filled’ your plate ; fine.  Thank you for not doing nothing.  But if you are still looking for something to do; you have many approaches from which to choose to help solve this problem.  One approach is meeting with your legislator for possible action in the form of a law regarding this issue.  There will be some more tools about this upcoming and there are many out there already.   It’s a powerful means to try to make sure that no one else passes away from undiagnosed T1D ever again.  It will take time, like it took us time in North Carolina.  And it may only be a step, but any step is a good step to build upon.

Another approach is now.  Right Now.  There are many means to download posters and spread the word in any community.  Others have shared theirs (if you have any, please share as a reply to this post on this page so all have the information from which to choose) and I have discussed many times what is available at www.getdiabetesright.org that Kim May (a dMom) and I have made available.  But there can never be too many reminders

I have also shared a REALLY POWERFUL note that can be sent home from school nurses created by the National Association of School Nurses.  This has been sent out to 33,000 people in their data base……but we can help.   I wrote about it and you can read about it and download it here.    Enlist school groups for community service.  Boy Scouts, Girl Scouts, After-School service groups, Chamber of Commerce—-create an army to distribute the letters and/or posters which can be hung anywhere; and you can do it with little money (cost of poster to be copied), or have someone with a printer donate a hundred for you to distribute.

People are discussing many things on a larger scale from PSA’s to other initiatives; these are all good—-in fact they are better than good, they are GREAT.  Many will take some time.  But one person, can do something or start something now.

Tyson Irby recently lost his battle by not being diagnosed.   I have been in touch with Tyson’s Family and this was shared with me last night;
We heard a story today of a mother, who heard Tyson’s story,  that took her daughter in because she was going to the bathroom more than normal. Her sugar level was 600, and she is type one. Maybe Tyson’s story saved her life.

Maybe?  I think not…..I think absolutely.   Reegan’s family has shared the same stories. So has Kycie’s Family.  The word WILL IMPACT.  This is a one-story initiative.  One tells two, tells four, tells eight, and on and on and on.  While the BIG STUFF is all being worked on, let’s learn from Tyson’s Family , Reegan’s Family and others——GET THE WORD OUT THERE however it takes.  While the BIG STUFF is being worded on, the poster seen, the letter from the nurses office received CAN AND WILL change a life.

Much has been done, much will be done, BUT MUCH CAN BE DONE NOW.  Have you ever heard those commercials that end with a line that states something like, “…..someone’s life may depend on it” ?  In this initiative, that statement is absolutely true.

Please, for the new year, just “Don’t do Nothing, someone’s life may depend on it.”

I am a diabetes dad.

Please visit my Diabetes Dad FB Page and hit ‘like’.

 

Bye-Bye Bayer

BayerHaving two kids living with diabetes means I’m…..well the father of two children living with diabetes.  As such, all sorts of things come to our house, mostly via the US Mail.

We received a notice the other day that stated;
Bayer AG (“Bayer”) is pleased to announce that it intends to sell its diabetes care business to Panasonic Healthcare Holdings Co., Ltd. (Panasonic). a company which is backed by funds……blah…..blah…..blah….blah.
Panasonic will operate the Diabetes Care Business under the new name of Ascensia Diabetes Care……
There is also a highlighted blue box that states our information will be given over to Ascensia……and also information where to find press releases and further information….blah….blah……blah.

The sale of the company was for 1.13 billion dollars according to a June Wall Street Journal report.

June—–either I am late to the party or this got by me somehow, but I just received the letter this week (and I know others have written about this already).  Is this a good thing.  Does Bayer still care about us?  Will Panasonic?  Does anyone?  They are “pleased to announce……”…….are we?

I’m not a big fan of change, I also understand that Budweiser no longer owns Budweiser; meaning that I get that in the corporate world mergers and acquisitions are as natural as the sun rising and the sun setting.  But I also know that when we entered the diabetes world, our lives became unglued.  One would have thought that there was some consistency with the corporate world surrounding the so many who need care; medical care…….right?

But when so many things get tilted, changed and thrown around……whether Asante Snap closes their doors, certain insulins will no longer be made, or even Bayer will cease being……well Bayer…….does anyone else ask……where are we in the mix?  We being the people who either have or have loved ones with this disease…….where are we?

We are set adrift to find what we need to find to stay alive…….and we will.  I bet if we wanted something from a company…..and we all got together and said we will buy your product no more unless you listen……..they would take notice……….or not; they could easily just sell off that division so they did not have to hear anymore can’t they?

I think we should be, and need to be, more of a partner in this diabetes battle with diabetes companies and not merely ‘users of products’……..yes?

I am a diabetes dad.

Please visit my Diabetes Dad FB Page and hit ‘like’.

 

Our Diabetes World NEEDS a Smokey the Bear……..any Takers??????

Smokey the BearThere is this commercial presently running on television in the United States.  It’s a commercial warning that your child could be at a very high risk of a fatal disease by merely casual contact of their peers.  At first I thought it was a fairly decent commercial warning of a potential hazard.

Of course it was more.  It was actually a commercial to get you to have your child vaccinated with their drug.  There are other commercials out there like this.  Many have to do with flu shots as well.

This got me to thinking.  There are many other commercials created for the only reason……..they are needed.

Many great PSA (Public Service Announcements) commercials are actually products of the Ad Council.  The Ad Council, by their own mission statement; Identifies a select number of significant public issues and stimulate action on those issues through communication programs that make a measurable difference in our society.

Hundreds of Ad Agencies, Sponsors, Media Partners, Corporations all have joined forces and have been responsible for some of the greatest campaigns…….well…..EVER.  Their longest running campaign, lasting over 70 years, has been those surrounding Smokey the Bear.  Worldwide has been their success on relaying the truthful impact that “Only You, Can Prevent Forest Fires.”  Simple.  Hugely effective.  Fun.  A message worth gold.

There have been so many initiatives within our community of late.  Issues of importance that need public awareness.  Imagine if there was an Ad Council for our diabetes world?  If all the companies gave one or two individuals, along with a few other advocates, and joined together and became the ‘think-tank’ for messaging on issues pertaining to diabetes.

Once a year we would meet at….let’s say……the ADA Annual Scientific meeting……and decide two or three messages and an ad campaign would be created.  Maybe even create one PSA annually to benefit T1D, one to benefit T2D, and one generic for whatever else is needed.  Let’s call ourselves The Diabetes Initiative for Ads to Better Enlighten, Teach, and Engage Society; or The D.I.A.B.E.T.E.S Council.

Surely there are enough companies to be involved that would make this extremely worth while.  And who would win?  The millions out there who have diabetes.
How cool would it be to see PSAs running and at the end a logo is show and the voiceover says; “The preceding was made possible through the D.I.A.B.E.T.E.S. Council”?

Send this article to someone in a leadership position at a company you know.  Tell  them to reach out to me and we will get the wheels moving.  Anything good begins with just an idea……any takers?

I am a diabetes dad.

Please visit my Diabetes Dad FB Page and hit ‘like’.

 

Twas the Night Before d-Christmas 2015

Santa Claus And The MoonWith special apologies to Clement Moore.   I present a tradition……an updated, ‘Twas the Night Before D-Christmas

‘Twas the night before Christmas, when all through the house,
Not a creature was stirring, not even a mouse.
The stockings were hung by the chimney with  prayer,
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; the so much diabetes clatter,
So many were still wondering what was the matter.
Away to the news wires we ran in a flash,
Devices getting hacked might it all crash.

As costs continue to rise on everyone’s supply,
So many wonder how they’ll get by.
D-bloggers continue to write of these capers,
It certainly can’t be left to all the newspapers.

Why many wrote on test strips and accurate numbers,
Who made the decisions on these stupid blunders?
To those with diabetes these really are not funny,
You’re playing with lives; it’s not about money.

As parents search for the docs and schools that really do care,
So much about this disease just doesn’t seem fair.
But as we turn and realize the continual fear,
I have some wishes for so many this year.

When you look outside at the fresh fallen snow,
Or out at the sea where cold you don’t know,
Think of those who inspire and soon you’ll see,
Those things have changed in the past and will continue to be.

Innovations like getting supplies to those in foreign lands,
There is AADE, IDF, and a Foundation of Hands.
There were great ideas to help our kids grow,
Even promising news from Ed Damiano.

We work very hard for a managed d-life to be,
And there is much help like CWD.
There was JDRF continuing in closing the loop,
And the ADA’s Stop Diabetes is still really a scoop.

There was TCOYD and programs were pooled,
And DRI’s BioHub news became very fueled.
There are so many camps that continue to say,
Spend a week with us for an even better today.

From Faustman, ViaCyte more news than ever before,
And stopping missed diagnosis will be the next score.
So as the year ends and criticisms comes quick,
Good things will come, and not all from St. Nick.

So listen carefully as you think of all that is run,
There is so much more work that needs to be done.
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 will stop it all when 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 is Santa’s toy bag for sure,
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 out of sight,”
The Happiest Christmas ever, and to all a good-night!

I am a diabetes dad.

Please visit my Diabetes Dad FB Page and hit ‘like’

 

It’s a Classic Tale We Have All Heard………….But Have We Listened?

Scrooge Carrying Tiny Tim in A Christmas CarolDo you think the majority of the people involved in this diabetes world choose not to be involved in diabetes causes?  Do you believe hat more people are interested in living their life with diabetes and that, in itself, is enough of a sacrifice to ask any one person; or one family?

I have stated before that compared to the number of people who are impacted by diabetes, and this includes immediate family members, there probably is just a small amount that choose to be active; and I will include those who are in the online community.

From a numbers stand-point, if there are almost 30 million people with diabetes and we add just a two-person-per-family exponential concern; that states an army of about 90 million people who have diabetes or have an immediate loved one dealing with it, are out there.  That’s a lot of people.

If you look at the entire online community and every diabetes organization you can think of, what is the number of people we are talking about…….4,5,6 million people tops?  So if six million people choose to be active in any sort of cause, advocacy, fund-raising initiatives…….where are the other 84 million?  And let’s be real generous and say 10 million are active, where are the other 80 million people?

So what does that tell us?  I believe that everyone makes their own choices.  Everyone decides what to do or what not to do……it’s their choice.  So if my numbers are anywhere near correct, is it safe to say that most people who battle T1 or T2 diabetes (and their loved ones) are more interested in just being acclimated into……well……life; and not to become any sort of advocate?

And the bigger question is are they wrong to feel that way?  Since this is the holiday season, is Scrooge’s comment a fair one from Dickens’ A Christmas Carol when he states; “It’s enough for a man to understand his own business, and not to interfere with other people’s.  Mine occupies me constantly.”

Is it enough to only be concerned with one’s own business?

When Marley’s ghost visit’s Scrooge, he reminds him that ‘mankind’ is/was their business and more time should be taken with the welfare of that same mankind.   It’s a true statement to think that, yes, our business of diabetes does occupy us constantly.  In fact, in some cases it is safe to say that we are almost consumed by the ‘diabetes’ around us.  But the question still remains, “If we do not help ‘ourselves’…..who, for goodness sake, will”?

I was having a conversation with someone recently, someone who is not ‘really’ impacted by diabetes.  They stated, “Have you looked online, ever, at the diabetes community….never have I seen so much bickering with people who should be of support to each other.”

Ouch.

There are many things you can do to help others.  There are many things you can do to help yourself while you help others.  But the simple truth is if you choose to do nothing, nothing will get done.  How much or how little you do is your call but know this; if we as a community do not uplift each other and support each other, we are destined to implode.

Perhaps we should just start with realizing there are differences in belief, management, styles, concerns, abilities; and start with a respect that the person we are speaking with is in the same battle as everyone else; even if they choose to do battle differently than us.  Maybe we should hold each other up a little more in support, as oppose to knocking each other down.  What on earth does that gain?  It’s not a matter of one winning but more of a realization that when that happens, we all lose.  And believe me when I tell you that the world outside of our inner diabetes circle………..sees it.

Scrooge also said, “We’ve been no worse than the next man, or no better if it comes to that.”   We can live like Scrooge lived, if we choose to, as well.  It’s our choice.  But also know that when he did not believe in those around him and refused to change his ways; three ghosts appeared to him to show him why he should.

I would rather not be visited by anyone when I sleep, much less three ghosts, how about you?

We might be better off not waiting for that to happen and to live with the attitude of ‘the little lame boy’ (notice the person living with something insidious is the same one to remind us) Tiny Tim, who chose to live life thinking of others and hoping that “God Bless us; God Bless us Everyone” should be the rule of the day.

Methinks he has a point.

I am a diabetes dad.

Please visit my Diabetes Dad FB Page and hit ‘like’

Here’s a Secret About Our Kids………….A Secret You Probably WELL KNOW Already.

You-Are-the-Greatest-BalloonIt has been an incredible week.  So much has happened and I’m truly blessed with just…..so much good.  I guess the biggest news is that Kaitlyn graduated from University from Rochester’s Intensified Nursing Program…….Cum Laude no less.

She had received her undergraduate degree from Stony Brook and worked for two years and also was an EMT—-much of this has been written about before.  She does a lot.  Kaitlyn has never given 99% to ANYthing she has ever done——it’s 110% or…….none.  She is the new RN BSN in the Department of Pediatric Endocrinology and Adolescent Medicine at Strong Hospital in Rochester…..THIS was a good week.

I have stated it a million times, our kids do everything in life with an asterisk.  They achieve everything in life with an asterisk.  And only we, as parents, know exactly what that asterisk represents.  Sometimes I think our kids with diabetes do not even know what that asterisk is because they just ‘get on with their lives’ whereas we, as parents, watch from a mile up.  We see everything.  We know EXACTLY what they go through.  We know exactly the road they take.  We know the struggles.  We know the perseverance.  We know the tears.  We know the frustrations.

SO when something really good happens, we get THAT MUCH MORE excited than most parents….because we know.  Deep down inside, we know that others who do not have the challenges of living with an insidious disease do not achieve success in the same way our kids do.  When our kids succeed it is exponentially that much more powerful……..to us.

We could never share that with those who do not understand because……well….they would not understand.  It’s ‘just’ diabetes…….right?  But we know.  I do not have to explain to you all what I am feeling because you know it too.  A high mark on a test, a goal on the soccer field, graduating law school, or becoming a nurse who will now help others live as she lives…….with diabetes.  You understand that……don’t you?

So good news in our house.  And in a house that has diabetes in it, success is always just a little sweeter.  And that pun is deeply intended…….because we know……don’t we?

I am a diabetes dad.

Please visit my Diabetes Dad FB Page and hit ‘like’.

 

Today is THE LAST DAY to Get a Letter from Santa……Your Kids will LOVE IT!!!!!!

Santa wants youTIME IS RUNNING OUT FOR THIS, THE FIFTH YEAR!!!!!!–get your child’s personal letter from Santa today–last day is midnight tonight….and help fund diabetes research at the DRI.
For details click the link below:
www.SantaClausDRI2015.org

ONE MOM WHO RECEIVED A SANTA LETTER THIS YEAR WROTE:
“She got her letter today-it was absolutely fabulous!! SUPER impressed with all of the details and the fact that you guys talked about her YouTube T1 Diva videos! J LOVE IT!!!!!”

ACT NOW
It must be done by midnight tonight (Tuesday).

I am a diabetes dad.

Please visit my Diabetes Dad FB Page and hit ‘like’.