Why Live Life in Fear When You Can Live it to the Fullest

CWD Smile Face quitters winnersI heard this statement from a person at the Children with Diabetes Friends for Life Conference in Orlando Florida this week.
“I refuse to let diabetes dictate what I do”.
I like that saying and I like it a lot.  It sort of summed up what thousands of people heard this week at this, the 18th Friends for Life Conference, sponsored by the Children with Diabetes.

When we first became active in diabetes causes after Kaitlyn’s diagnosis, I became the Executive Director of the JDF (now JDRF) Long Island Chapter.  At that time we were one of the handful of chapters chosen nationally to serve as an experiment for a new idea called a walkathon (that for years, was really only run by the March of Dimes) to help increase visibility AND revenue.  The JDF was doing walks before, but they were about to catapult to a whole new level of success.

When I became the Executive Director, the chapter was reeling from the death of a young man named Angelo Centano.   Apparently Angelo had many complications but he also had this incredible spirit, an incredible sense of humor, an incredible disposition, and an uncanny way to get things done despite his many physical limitations.  One day I found a note in my desk and it had a quote on it from Angelo.  It was a simple note, but a powerful note nonetheless:
Quitters Never Win, Winners Never Quit.

I’ll never forgot it.

There are many people who lost their battle against diabetes, many.   You have read about them and so have I, knew quite a few also.  Every single person, no matter their age, that I know who we lost to diabetes was ALSO living life to their fullest when they were taken.  They were not comfortable to just live life in a bubble or on eggshells, THEY LIVED!   I have also felt that the people who choose to believe that they can do ANYTHING with this disease do so and pay homage at the same time, in a way, to those who are no longer with us.

No matter what life throws at us (and make no mistake, we all have something), we cannot avoid how it hits us but WE CERTAINLY can get out there and make sure that we are not stopped…..and we shouldn’t be stopped, ever.  The only thing surpassing all of the incredible knowledge given this week at CWD, all of the wonderfully talented people who did the teaching this week, and all of the great times; is THAT sense of empowerment that even with this disease…….limitation is truly ONLY limited by your imagination.  It’s given to everyone…………………….by everyone.

Today many people said goodbye when they left Coronado Springs to the many, many new friends they all met, and the old friends they have known at this most incredible conference.  They inspire each other to do better.  The push each other to the limit to succeed.  They have instilled in each other the absolute belief that quitters never win and winners never quit………what are you doing to get back in the game?
I am a diabetes dad.
Please visit my Diabetes Dad FB Page and hit ‘like’.

 

Yeah, But….But…They’re on Immunosuppression…..Let’s Just Take a Look….

butWhen it comes to research, there are so many occurrences simultaneously that it’s very difficult, at times, to keep one’s hand on the pulse of so much activity. When it comes to the notion of research in our diabetes world, there is something I have noticed that I want to address. It’s this notion of the immediate discounting of research projects because the patient is on some sort of immunosuppression regime. I get it. More than that, so do the research centers.

Let’s be clear, this is about diabetes research as a whole, and not specifically of the work being done at any one place. I have a very unique perspective because of my constant involvement in the research world, and when it comes to that, I have often shared my thoughts and surely welcome yours.*

The people who undergo clinical trials are, usually, in a very dire position with their diabetes. It’s not as if there is a protocol in place and volunteers are merely chosen because they live with type one diabetes; there is more consideration than just that point. In many cases, due to severe glycemic reactions, these patients are in dire need of intervention. For whatever the reason, people seem to believe that patients in these protocols are just like their loved ones at home but are now on immunosuppression. I know this because I constantly see the comment from the uninformed, “Yeah, but they are on immunosuppression drugs” as if to discount what is going on.

Hypoglycemia unawareness is a very dangerous complication to having diabetes and usually required in many of the diabetes protocols to be involved in clinical trials; dealing with having something placed inside the patient’s body. This is not a phenomena of just having a low blood sugar; hypoglycemia unawareness stops people from functioning in a normal surrounding.  Without warning, to collapse from a low blood sugar…….again, WITHOUT WARNING.  It can make driving, functioning, and in many cases from even living alone extremely difficult. It’s very serious. So is severe hyperglycemia allowing for almost a constant threat of DKA.  Imagine the impact of having high blood sugar and keytones almost always.

When applying for a clinical trial these patients, after an exhausting process, have come to the conclusion that living with the immunosuppression drugs outweighs the quality of life they are presently living. Immunosuppression drugs prevent the body from rejecting anything not recognized ‘as self’ and usually not used in children unless their life is in jeopardy.  Understanding that point; if someone needed a kidney transplant, they would be on immunosuppression drugs; a heart transplant results in the same regime and yet, no one states, “ah yes but they are on immunosuppression drugs” because the procedure outweighs where the patient’s physical status is at the time of the transplant.

All things Islet Cell come into mind here. Donated, porcine, stem-cell derived, implantable device, and other means of placing cells in a patient’s body and functioning is an amazing progression to the end game being sought.  For the present, it’s in patients that need a better quality of life than what they have, living with this diabetes complication every day. And it’s just that, a severe diabetes complication.

Now in as much as these protocols occurring around the world are what they are; they are also MAJOR STEPS in every research lab’s Holy Grail. To perfect the process and create a protocol that someday CAN be used in everyone with diabetes, without anything else that must be administered. Of course that is what each lab out there searches continuously to achieve.

I have shared with you all a million times that my regret is that I have been at this for over 23 years. I have learned a few things. I lived in a world before the everyday use of pumps, pork insulin (although people diagnosed after 2005 might be more familiar with the word ‘porcine’ than ‘pork’ or ‘pig’—-oh we have come so far), and when the letters CGM were mere letters that followed BFL. There was a time this world emphatically believed that islet cells COULD NOT EVER function in another human being. IT WOULD NEVER WORK under ANY circumstances was the belief. My question, of late, has always been with so many labs doing SO MUCH regarding the use of Islet Cells; why is not every penny of research money in this world going to perfect the hurdles to MAKE work what we know CAN work?

So the next time you find yourself saying the rhetoric phrase of, “Yeah but they are on immunosuppression drugs……..” perhaps we might all be better served to ask, “Okay, it needs to work for my child to use it, but it does work in some, how can I help to perfect it?”  Of course this is just my opinion and as always, I surely welcome yours.

If it was said that one day we will walk on the moon, and we did; is it not just as important for us as parents to say, one day my child will walk without diabetes.  As it stands now in our diabetes world, we have one small step for man……..it’s the next large leap for mankind that needs all of our attention.

I am a DiabetesDad.

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

* My disclaimer is, as always, that I have chosen to be an employee of the Diabetes Research Institute Foundation which supports the work of the Diabetes Research Institute at the University of Miami Miller School of Medicine.

A Line from an Award Winning Play…….Describes Life.

Our town“Do any human beings ever realize life while they live it?”   One of my favorite plays to both read and to have performed is Thornton WiIder’s Our Town.  Pictured above from over 35 years ago, this one line still resonates with me so many years after I played George, in a truly wonderful production.  How would you answer this question from the classic?

On this night my Brother-in-law, Jon, was joined by other Detectives in their retirement dinner.  For over 30 years he served a community and saw things that he will never talk about and did his job with dignity and honor.  In his ‘thank you’ speech, he emotionally mentioned his Mom, Dad, and brother (a Vietnam War Hero) who are all deceased; and how he wished they were with him on this night.  And perhaps because this is also the 7th anniversary of my dad’s world departure, well it’s a tad emotional.

The people who came before us.  They mean something, they really do.

Your kids are not wearing an insulin pump because it just appeared.  CGMs did not just come into being.  Anything you use today to manage your diabetes did not just magically happen.  Things came about because years ago someone had a vision.  Someone believed that our world could be ‘better’…….and they set out to make it that way.

I stopped counting how many times I picked up the phone to ‘talk baseball’ with my dad realizing that it could not happen.  His voice is silenced.  But I have learned to appreciate the many things he left for us to still enjoy; because they were his, and he gave them to us.

It is this appreciation that makes me realize the things we now have should never be taken for granted and should be understood for what they were/are.  Perhaps not perfect when they were first introduced, but progressed and have been perfected into something extremely useful.  Something that has changed our lives.

My dad loved science and medical advancement.  That interest was passed on to me………and I love learning all I can regarding what impacts my children and their living with type 1 diabetes.  I think of him with each new development in our diabetes world because he left that love to me and it has served me beyond measure……………..I only wish I could have one day to talk to him about all of this exciting stuff again.  Even an hour, I would take.   Even a minute.

The main character answers the question posed above, in the play, when he responds;
“No……………………………… Saints and poets maybe…they do some.”

Sigh
I miss you Doggie Daddy……….still.

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

 

Please DEAR GOD, What Will it Take……UK Tribunal Hears of Death Due to Missed DX T1D.

Clair TaylorI AM SO ANGRY.  She is gone.  It happened in 2012.  Now a Medical Practitioners Tribunal Service in Manchester, UK, is hearing the case to see what can be done about it.  Claire Taylor was a talented dancer and baker who wanted a career as a dietitian as her older brother Andrew had Type 1 diabetes.  Even with this knowledge, her diagnosis was missed being sick for up to two months prior to her death.

Read the entire story here.

What will it take for us, here in America to realize THAT THIS IS A PROBLEM here as well?  On a day I read that d-mom Debbie George was hugely successful in California with a Resolution passed 38-0 for better diabetes education; I’m reminded that too many do not find this subject important enough to tackle.

I plead with you,  Be in contact with anyone and everyone you know in this diabetes world.  We have an ADA conference approaching and an AADE conference approaching……please organize a group of people in the same room to discuss, at least, the missed diagnosis of T1D.  Even if we do not come up with solutions……please let’s just not talk about it thinking it will just ‘go away’.   It will not.

I have hugged parents who have lost their child needlessly. I have talked to top professionals in this field who say that diagnosis of T1D upon DKA is rising.  We pride ourselves in America as being leaders——PLEASE TAKE A LEAD from our friends in the UK…..let’s open a dialogue on trying to stop diagnosing T1D by being diagnosed in DKA.  This is one wound we can, and should, take everything in our power to prevent before the knife cuts the flesh.

Please pass this along to anyone you know in these organizations……..a dialogue can surely continue what has started in ten different states already.

What will it take?  PLEASE let’s open a dialogue.  It’s getting so tiring.  Why MUST it always happen again, and again, and again.  Take action—-ask the organizers of these conferences to hold a discussion……a simple discussion on this topic.  We cannot begin if we do not talk about it……..I assure you it will not go away!!!!!…….and in the meantime it will cost more people their very lives……..needlessly.

I am a DiabetesDad.

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

 

 

 

 

http://www.mirror.co.uk/news/uk-news/seriously-ill-teen-diabetes-died-7556080

Impossible………Really Means “I’m-Possible”…….to Make a Difference.

PossibleI’m always touched by the strength of families who do so much to make “Hope” a reality.  The biggest hope I will always have is for a cure for this disease.  I know, I know, I KNOW so many say that they are tired of hearing about a cure.  It has been promised so long.  The doctor said way back when it will be in just a few years.  I heard all of that also…..I also do not have an ostrich complex with my head in the sand.  I know the time upon the clock.

And still……..

The DRI had their walk last weekend at Marlins Stadium.   Thousands upon thousands were in attendance.  And wherever and whoever you support, you attend these grass-root-type-events also.  The next time you are at one, do what I do.  I look around at all the families that have been diagnosed more recently than in our household.  I look at the little faces who want a cure……….need a cure.  That hope NEEDS to stay alive UNTIL we get there NO MATTER how long it takes.

The fire in me will never die until we reach that goal we sought from the beginning, a cure.  Management devices are great, and ever-changing, but my goal has never changed since I stood by Kaitlyn’s bedside and promised her that we would get there.  Where is that promise in the world today?  Will we, collectively, be happy with just better management tools?  I welcome these management tools.  I do.

I have seen some of the most incredible advances in this area.  We were there before pumps were in everyday use; we were there when CGM were merely three letters of the alphabet;  glucometers took 90 seconds to give a reading; there was no computer chip on a test strip; insulin was made of pork……and much, much more,  We welcomed all of these wonderful advances.

And yet, and still, with all I have seen in my life,  I take each breath searching for the one and only thing that will make me sleep peacefully at night.  I think we need to get back to what every parents REALLY wants.  I think we need to end this thinking that something which can be grasped is so unreachable.  I think we need to stop listening to voices that  say, “Well sure the cure is important but we need to give all of our focus to a better device”.

Yes, we do need to give focus to better devices………but an equal and even thrust MUST ALSO BE GIVEN to VOICES pushing for a biological cure, where ever you believe that to be.   We walked on the moon…..the vision was given, work was thrust toward that end, and it happened.  Impossible just means I’m-Possible to make a difference.

Does a cure for our children deserve any less?  Do our children deserve any less?

I am a DiabetesDad.

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

 

Parents, Like Protecting Lions, are the Diabetes ‘Blue’ Circle of Life

Blue Circle of LifeThe call comes in.
Another child is diagnosed with type one diabetes.
Another family is impacted and changed forever.
The call comes in.

I’m surely not an island when it comes to this type thing, many take the call when it  happens.  We have been there.  We become the ‘one’ people call for whatever the reason; for however the reason.  People hear of someone being diagnosed and they say, “….you need to call my friend, they are very involved……and they can help you.
The call comes in.

I hate those calls.  I certainly don’t mind helping in any way I can but I also am well aware……well aware too much what is about to happen in a household I do not know. I have been there……twice……I wish I never became aware.

One would almost think it gets easier.  It doesn’t.  All of the memories come rushing back to ‘that’ September 26th, or ‘that’ March 20th when my kids were diagnosed.  I now know what I know because going through it educated me like nothing else I could ever learn.  Nothing else compares.

That’s said, there were others helping us also in 1992.  Barbara, Faye, Karen, Marie, Jon, Charlie, Joe, Rhoda, Jane, and many others.  You see this is what we do, we are parents.  Someone was there for us and we are there for others……..it’s the Circle of Life. It’s the Blue Circle of Life in our diabetes world, something we would never see in the Lion King, but it’s there none-the-less.  You have helped someone else because someone helped you.

Read these words from the song, carefully:
It’s the Circle of Life
And it moves us all
Through despair and hope
Through faith and love
Till we find our place
On the path unwinding
In the Circle
The (Blue) Circle of Life  

These words are us.  Share how your circle came about and how you continued it.
Today I say thank you to everyone out there who took the time to be part of this Diabetes Blue Circle of Life……and I thank those who were part of ours, so long ago but still remembered, when we needed it most.

I am a DiabetesDad.

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

 

 

 

 

Kids Who ‘DO’ Because They Care for YOUR Child with Diabetes

Hands togetherI have stated often that “I have to do this”.  For my kids, I would do anything and I do not merely get up in the morning, I pretty much jump out of bed because I know something GREAT will happen in this cause that has, in essence, chosen me.  It is pretty much the largest percentage of my day.  I have chosen the Diabetes Research Institute for the majority of my energy, both professionally and on my own to support, and you may have chosen something or somewhere else……and that’s just fine.

But we do what we do because there is passion in our hearts and a flame in our souls…..right?   But do you not just love observing the world around us and all those WHO CHOOSE to support the same cause as we do.  Do you not just marvel at the passion so many others show who do it because they believe as we do without the same connection we have to this diabetes world.

There are so many that ‘do’ and last night was a huge example of such an effort.  I was honored to attend, and be asked to address, the capacity-packed stands at West Broward High School for their annual DiaBEAT THIS! event sponsored by their student organization S.O.A.P. (Student Organization of Anatomy and Physiology).  I wondered, after last year, if the ‘wow-factor’ could possibly be repeated again this year.  How they ever out-do themselves each year is just beyond me……but they did—–and big time.

It’s not just the education about type one and type two which is everywhere you look throughout the building; it’s not just the fun-loving completion of the basketball games; it is not even the ‘magic’ of each performance from toddler to razor-sharp dancing, cheerleading, and music of the student body; no it’s more than all of this……it’s a unified spirit that, quite frankly, is rare at this magnitude.  This spirit creates an energy unlike anything I have witnessed before.

There is just no question that West Broward High School is incredibly adept at tapping into each student’s strength.  They live by the notion that the greater whole is only the sum of the parts……and ohhhhhh those parts……talk about a chain with no weak link in the entire length.

The energy is not just in the building; it grabs you, bear hugs you and charges you up from your toes to the top of your head; because the energy is in each person.  Students and faculty do not just say hi to you, they high-five you, fist bump you, and give hugs as readily as any group you will ever meet.  With the exception of the obvious age gap, the barrier of student/teacher is blurred of a hierarchy that can just be explained as a ‘we are’ attitude.  This is our school, all-of-our-school, and ‘we are’ West Broward High School.

From students who stop and pick up a piece of paper on the floor, to a faculty that sweeps if needed, to a student organization that decides it’s better to give back, but like everything they do at this wonderful school they only know how do things one way—–and when they give back they give back one hundred and fifty percent.

My eyes were wide open last night observing an incredible spirit; my ears were open last night enjoying beautiful sounds; my spirit was renewed last night by a group of kids and faculty who ‘just get it’; and above all my heart was touched last night, as a father of two kids who live with diabetes every day and really want a cure, by a community who said loudly they care and together we can all…….DiaBEAT THIS!

I am a DiabetesDad.

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

 

We Are Our Children’s ‘Diabetes Training Wheels’!!!!

iNSULIN Training wheelsAs I traveled to work yesterday, I came upon a man who was teaching his child how to ride a bicycle.  With his one hand he grabbed the seat, and the bike leaned at an angle to the left as his son made his way down the street leaning heavily upon the training wheels as the little boy tried his hardest to upright his ride.  I’m sure within the next few weeks he will be enjoying his new right-of-passage around the neighborhood and the training wheels will be removed.

When our children are young and they become diagnosed; clearly we, as parents, once again teach them the way to stay upright.  We become their training wheels for which to lean heavily as they attempt to get it right.   The reason that the man could teach his child is because, I’m sure, he too had to learn how to ride a bicycle.  Hard to teach something unless you’ve done it…..right?  Downright almost impossible, how can you teach something unless you know from experience?

By now you know where I am going with this I’m sure.

What you have done since diagnosis is amazing.  Not only did you teach your child, you had to teach yourself.  And YOU HADE NO ONE to lean on as heavily as your child needs to lean on you.  You had to get your self up to speed pretty quickly.  And you did.  Now at this for over 22+ years, admitting doing very little for my kids at this point, I still wonder whether it will ever be done…..right.  Buy I know they surely know so much more than when we started.  That’s our goal isn’t it?

Take a look back today and realize that your child is doing as well as they are because of you.  Your knowledge, sweat, and tears have got them to the point where they are upright on their own, or will be soon.  You did that!  You were their training wheels for them to lean on as they learned…..and as it goes on a bicycle, there will always be new roads to explore.  Think about it.

I am a DiabetesDad.

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

 

When I Used To Sing To You…..A Poem the Night You Were Diagnosed.

Kaitlyn JObWhen you were born, I used to sing to you.
I picked a great song, one from Broadway of course,
It was called “Nothing’s Gonna Harm You”
I would sing it to you
When I used to sing to you.

When you were hurting, I used to sing to you.
It was from Sweeny Todd, the Broadway hit.
You liked it very much.  It soothed you.
I would sing it to you
When I used to sing to you.

When you were cranky, tired, or in pain, I used to sing to you
I’m your daddy and we do that for our little girl
My job is to protect you, and to make you smile; daddy’s job.
I would sing to you
When I used to sing to you

I loved the words, the ones I used to sing to you.
Nothing’s gonna harm you, not while I’m around.
Nothing’s gonna harm you, no baby girl, not while I’m around.
I would sing it to you
When I used to sing to you.

You remembered well when I used to sing to you.
The night you were diagnosed and in the hospital.
You looked up at me and said, Daddy sing!
I wanted to sing it to you
I truly wanted to sing to you.

I started the song and my whispers broke into tears.
I could not stop that harm from coming.
To this day people ask me why I do what I do,
I answer, it’s a promise I made to a little girl
When I no long could sing
The way I used to sing to you.

I am a DiabetesDad.

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

 

 

 

Do Not Let Diabetes JUST Be a Crap-Shoot

Dice thrownThere was a really funny episode of the old Odd Couple television series when Tony Randall (as Felix) writes the word ‘a-s-s-u-m-e’ on a blackboard and he proceeds to circle the word in sections.  When you assume, you make an ‘ass’ out of ‘u’ and ‘me’.  Oscar was completely dumbfounded; it was probably more poignant than funny but a lesson for all.

In our diabetes world we can, or should, never fall prey to ‘assuming’ anything.  Remember we all knew little, if anything, when our children were diagnosed with type one diabetes.  How much more do you even know today?  Is it enough?  Do we only ‘assume’ we know.

I find it baffling to see so many resources to protect our kids and, yet, people not having a clue that they exist.  But then again, I’m also baffled how anyone with flu/virus-like symptoms is not tested to see if they are in DKA….such is life in the real world.  But that said, in today’s social media world where if a celebrity sneezes the wrong way it is captured and shared a million times, it would make one think that diabetes education is so readily available with a huge library of social media diabetes education of resources.  But is it?

Where is the disconnect?

If, at the simple touch of a button, families have access to the world of education in diabetes, why are kids missing 50 or more days of school each year; have not a clue the difference between a CGM and an insulin pump; dealing with an ever-increasing amount of DKA cases (after diagnosis) and do not know what an islet cell is…….why is that?

Years ago, and I have shared this before, we would have schools participating in a theatre education program.  Schools would come in to see the show I was appearing in New York City and we would have a Q&A afterwards.  On one memorable occasion a young lady stated,  ‘I’m trying to be an actress, what advice do you have?”  My friend Glenn rattled off a list of questions about how prepared she needed to be and she could not answer that she had done one thing he mentioned.  ‘This is not a hobby, you are nowhere as serious as you need to be.’  The room became awkwardly quiet.  He finished by saying that this may sound a tad harsh but those that do best in the business of ‘acting’, work very, very, hard….and if you are not willing to do the work, REALLY do the work…….don’t start.

How much more than a career, are the lives of our children?

When a newly diagnosed parent of a child with diabetes comes online we share with them how our heart breaks for them, we are so sorry that they are now part of this club, we cry with them…….but do we need to do more?  With two kids battling this disease, believe me I have the scars, just as you do.  I know we have to place our arms around those families when newly diagnosed.   But we ALL KNOW too well how hard this can be and the only way to neutralize the many things that can go wrong, and will go wrong, is education.  For the parents, for the child, and for the family.

Do we suggest that?    And yet, it could be the single best advice we can give when someone is glazed over from the shock of being diagnosed.

We do not have to list the millions of things they need to know when we first speak to a newly diagnosed family but we can tell them that the only thing that can help them battle this disease, with the impact needed, is to do everything they can to educate themselves.  Hug them, cry with them, BUT DO NOT LET THEM leave your presence until you tell them that they MUST EDUCATE themselves about everything they can.  The mother must.  The father must.  Include the grand parents if they are willing as well.

Education is the equalizer in diabetes.  EDUCATION IS THE EQUALIZER IN DIABETES.

Because this disease is not a crap-shoot-hope-for-the-best disease.  The only chance to get through it is to know, and know all you can.  And even with that, nothing is guaranteed.  Learn this, no matter what you do in this world, something can happen to your child with diabetes.  Should that incredibly miserable day EVER occur, and when you are by yourself looking in the mirror, I assure you that you will ask, “My God did I really do everything I could?”  Don’t wait for that day to occur, look in the mirror and ask yourself that question TODAY.  Do not answer for the online community, or for your spouse, or for the world around you—-look at yourself and answer for only you.  And if that reflection says anything but “yes, absolutely”, than get yourself into gear and learn what you need to learn.

Camps, Children with Diabetes Friends for Life, support groups, online resources there is a limitless supply of how much you can learn.  Do everything you can…….and even after that……a few prayers of hope will be in order.

I am a DiabetesDad.

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