When they Die……….the Reflection is in the Mirror

Someone died.
I know you are thinking of a young lady who was taken too soon.  It’s sad, isn’t?
The diabetes community turned their lights to blue candles, as they do, and the outpouring was just everywhere.

It made me think.

Today is also the 5th anniversary since Little Reegan was taken from us.  That’s sad too.  The list is long, Reegan and Kycie who passed before (or due to) their diagnosis and Sophia who passed after her diagnosis; results in the same sadness…..doesn’t it?

I ask, as I always do……but are you angry enough to try to change it?  Are you sad enough to try to make it not happen again?  Are you moved enough to not sit back and wait for others to do the lifting?

Now hear me…….if you have, or are, doing to the best of your ability, I’m not speaking about you.  I do not care how small or how insignificant you think what you do might be, the fact is you are doing something, and something……is not nothing.

I know that each time this happens, each time, each time ANY child dies, and I would do it the same way if was my own; I look into the bathroom mirror and look at my reflection and I say the words, “Are you doing everything you can?”  I do not answer right away. I think of those I know who have been lost and I think of those who I love, and then I think of my two kids who continue onward with this disease.  When I’m done with that thought process, I look at the image looking back at me and I literally ask, “Tom, do you think you are doing enough?”

What happens between me and my reflection will stay that way and yours should too.  The answer should remain yours also along with the actions you take.  No one’s business but yours.   But for the sake of those we need to stop from dying, for those we need to educate so they do not die while not knowing, and for all the those that live every day…….it’s my hope that each and every one of us, alone in the bathroom, ask that reflection, “Am I doing all I can?”

Because if not us…………who will?

Rest in Peace little ones…..your memory will make a difference.
I am a diabetes dad.
Please visit my Diabetes Dad FB Page and hit ‘like’.

Death from Diabetes……A Small Glimmering Light has Arrived

By far, this is the hardest thing that I have been involved both in and with; on our diabetes journey and within our diabetes community.  It is hard.  It is sad.  It is reality.  And quite truthfully it just sucks.

The number one thing that occurs when someone dies in our diabetes community, is the loss of what to do when it happens.  What can we do to help?, is asked over and over again.  What to do, what is right, how to help.  Now there is something with true substance that we can all do when someone passes away.  And unfortunately, it will happen again.  My picture today is the blue candle, but I have added a glimmering light, small as it is, because it is a light that many families will need at their most difficult time, that may now be there to help.  Somewhere to turn when so all alone.

Today is National Bereavement Day and Beyond Type 1 has ONCE AGAIN stepped up, to help our community. I believe that Beyond Type 1 (BT1) is truly one of the most remarkable organizations in existence.  What no one touches…..they hit head on.  Listening to Sarah Lucas, Thom Scher, and/or anyone at BT1 when they discuss diabetes topics, you feel their passion–it becomes tangible; their actions are a force, their actions are quick, their actions have substance.

Today, this wonderful organization has partnered with one of the people I respect most in this battle, Michelle Page Alswager.  Michelle lost her precious Jesse at age 13.  Others may just give in and give up, and truthfully, no one in the world would ever blame them.  Michelle has taken her grief and reached out to help as only someone who has experienced this pain can…….she has made it a rallying cry to help others.  She has been an advocate for years to those who lost someone and, as is their custom (missed diagnosis, Tu Diabetes etc), Beyond Type 1 has stepped in to fill a void, and if you know BT1, you also know they do nothing halfway…….this is no exception.

Jesse Was Here
From their new website page:
Launching August 30, 2018, Jesse Was Here was inspired by Michelle Page-Alswager’s experience after the sudden death of her 13-year-old son, Jesse, from Type 1 diabetes. Grieving the loss of her child, and the potential loss of the diabetes community, she created an online community to support parents who had also lost their children to Type 1 diabetes. By connecting with others who shared her experience, she realized many of those seeking support and opportunities to honor their loved ones, also struggle with unexpected funeral expenses, ongoing medical bills and sometimes even the funds for a headstone. Through her efforts, she discovered many others — not just parents of young children — were looking for peer support, practical information, coping tools and financial assistance. Working together, Michelle and the team at Beyond Type 1 are creating a very special program to serve this unique and deserving community.

Keep this as a resource because, the painful reality, it will be needed.  While you’re at it, give a few bucks to them as well because in reality, they can only help with what they have.  If you have ever asked, How can I help that family?—-now is your chance.

Truthfully, I hated writing this article today because it just reminded me of just so much pain I have seen others go through over the years.  But it is comforting to know that people like Michelle are not afraid to walk-the-walk, and organizations like
Beyond Type 1 are not afraid to listen, and step up.

It is what makes being part of the club none of us wanted to join; a little more bearable.
I am a diabetes dad.
Please visit my Diabetes Dad FB Page and hit ‘like’.

Diabetes Disaster Response Coalition is Activated—Hurricane Lane

The Diabetes Disaster Response Coalition was created after years and years of people wanting to do something, AND DOING SOMETHING, but without a cohesive effort so the entire diabetes community knows what to do in the time of disaster.  This is the only time I will speak in general terms about this group…..moving forward, when you see the logo, it will be an indication that there is an update as this column will be turned over for information about a particular disaster.

During times when you want to help, go to the Diabetes Disaster Response Coalition FB page for up to the minute information on how to help.  There is a great body of people involved on this Coalition co-chaired by Carol Atkinson (Insulin for Life/USA) and Kelly Mueller (American Diabetes Association) because that makes sense.  There is a lot of things making sense with this group.  At some point I will fill you in on who is involved but let’s get right to the nitty-gritty with information on what to pass along to your family and friends in Hawaii who might have diabetes concerns.

The most important information is what YOU NEED to do to be prepared to handle your (or a loved one’s) diabetes care during the upcoming storm:
CLICK THIS LINK FOR PATIENT PREPAREDNESS

1. Documentation. Write down type of diabetes you have, other medical conditions, allergies, and previous surgeries. Include current medications, doses, and time you take them along with your pharmacy name, address and phone number.

* Prescriptions. Ask for an extra supply of all medications, including insulin and Glucagon, if prescribed. During an emergency, you are eligible for an emergency override. Call your pharmacy, if they say no, contact your healthcare provider for an altered prescription. Warning: Insurance may not pay for the increased amounts.

2. Insulin. If you lose power and you have unused insulin, don’t throw it out! In an emergency, it is okay to use expired or non-refrigerated insulin. 3. Shelters. A live map of open shelters from the American Red Cross can be found here. You can also contact the American Red Cross directly at 1-800-RED-CROSS. If you find yourself in a shelter without proper diabetes care and supplies, call 1-800-DIABETES.

4. Statewide Updates. Emergency updates and other resources can be found here. Hawaii Emergency Management Agency. http://dod.hawaii.gov/hiema/

The Diabetes Disaster Response Coalition FB will be updated as needed.
I am a diabetes dad.
Please visit my Diabetes Dad FB Page and hit ‘like’.

CGMs Upon Diagnosis Moving Forward? Thoughts?

I’m sure there was a time when people were dealing with their diabetes; and were used to peeing in a cup, boiling water, dropping in tablets to match a color chart, and check the color of urine to see how much insulin was needed, they were content with the procedure because it was really the only choice. You did it this way because that is the way it was.  And along came a study that showed close control of blood sugars could help enhance the life style of those with diabetes and even prolong lives.

What happened?

Well the pharmaceutical business EXPLODED with devices and treatments never seen before in our diabetes world.  What was a 30 minute process, minimum, was now being done in 30 seconds…….but there was a catch.  The individual needed to harpoon themselves 4-8 times daily to produce a drop of blood used to measure the glucose when applied to a strip attached to a meter.  That was the tradeoff.  It was better and faster but to the individual, was it ‘better’ to stab oneself in the exchange of faster and more accuracy?  That is the way it was.

You see if you have been around in this diabetes world twenty years or less, you really do not know anything else but glucometers as THE DEVICE to use.  You became used to ‘harpooning’ yourself because that was the way of the world and you were taught nothing different.

What happened?

An all-out war broke out in the pharmaceutical world to be the fastest meter, the most compact meter, and the most accurate meter.  And work began to improve upon ‘the norm’; to make it so no blood drop was even needed.   A way or a means to check one’s glucose constantly and on a device where the information was sent electronically, constantly……..like predecessor management tools, it seemed like a dream come true.   But it happened and the continuous glucose monitor (CGM) is now a part of our every day life……..for some.

“I do not want to wear something all of the time?”
“I’d rather do it the old-fashioned way with a meter.”
“Being attached does not seem right to me.”
And if you did not always use a CGM……that is your call.

But we bought up a generation of kids who knew nothing else when it came to harpooning themselves to obtain that drop of blood…..it almost seems archaic, doesn’t it?  But they surely accepted it as ‘the norm’.  It’s time to bring up a new generation of kids.  Kids who know nothing else but wearing a CGM………because it makes sense.   The glucometers are becoming less and less and more people are on a CGM than ever before.  Sure we need glucometers, but now they are mostly a back up.

It makes sense that there is something that can alarm when you are low and warn you.  It makes sense to have a management tool almost the time you are diagnosed that can help prevent those swings from low to high and back low again that leaves the person with diabetes feeling like that they are in a spiral in all sorts of directions.  It makes sense to wear something that checks one’s blood sugar constantly.   I’m sure when the choice was to pee in a cup instead of harpooning yourself, it seemed likely to stay with the old way, it was easier………but we now know it was NOT better.  Was it?

It’s time to once again challenge ourselves with something better and not necessarily easier. A CGM should be given as soon as a diagnosis occurs.  We need to ask those questions once again?  From the moment one is diagnosed.

What do you think?

I am a diabetes dad.
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’.

This Year’s Lisa Award Recipient. Only One and the Only One Awarded Twice….Here’s Why.

For years, each June, I have given out my Lisa Awards.  Lisa passed away in 2009 at the age of 36 and she taught me, and this world, about the Power of one person.  Usually I acknowledge a few people who have taught this world the power of one in the diabetes world because that is the world I live.  Lisa’s battle was with cancer but her message was, and still is, about one person making a difference.  I promised her husband (my dear friend) that I would do this annually in honor of my friend.

This weekend being Father’s Day, and this column being ‘DiabetesDad’…….I’m hoping you will indulge me to a little selfishness this year.  This year my unknown world of cancer and the world I know of diabetes comes together as I give this year’s Lisa Award to just one person, and probably the only one who will ever receive it twice.

Paula Ford Martin.

Paula has cancer.  You can read about her fight at Living with Stage IV.  But as an author and television producer, Paula has also influenced the world of diabetes as few others.  The two worlds have now intersected.  Almost as if my world, and Lisa and Mark’s world, overlapped.

The first day I walked into my interview to be part of the dLife Family, a CNBC TV show all about diabetes, it was a day of filming. We were back stage when Paula and I first met and after our meeting I went home and started doing computer searches on all the people I had met that day.  Paula, it turns out, was a powerhouse writer with awards and a diabetes knowledge that was extremely impressive.  Most impressive.

I would come to work side-by-side with this woman for years.  I would come to learn so much being her partner at dLife.  I would also come to love her.  As dear a friend a person could ever know, despite being about as polar opposites as possible.  She is hard rock and a motor cycle, while I walk and listen to Barry Manilow; her eye rolling of my likes in music vs. hers was a very common occurrence.  “Really Tom, that’s music to you?”  Opposite.

She did have a wonderful match when she met Tim, an absolute soul mate.  She and Tim would marry and her life, along with her children (who she fiercely loves) became absolutely complete.  Shortly thereafter, fate stepped in; her journey began and Tim has been there every step.

There are four people responsible for me being called ‘a’ (not to be confused with ‘the’, there are millions of us) DiabetesDad and on the platforms I’ve been blessed to be part; Jeff Hitchcock, Kerri Sparling, Monica Dennis, and Paula Ford-Martin.  All have played a role in this process and it’s too long-a-story to explain today…..but here I am, warts and all, due to their urging, education, guidance and on many occasions-patience. (Turns out that not everyone should write as they speak; who knew)

Paula has the most artistically editorial refined code of ethics of anyone I’ve ever met.  Her going face-to-face with anyone who wanted otherwise is known to those who worked with her.  In the worst situations, find humor.  In the coldest story, find warmth.  In the toughest and most stressful of situations, find humor.  We did that more than I can count.

We were both Executive Producers on a show that would open the gates to learning and understanding this diabetes world and it’s Paula who walked with me step-by-step.
“This is good.”
“This is not.”
“Do this, try this, ask this, follow-up with, do not back down, let’s try this, yes you can, what if we try, can you believe……..and in her recent writings she has changed the world as she shares her battles Living with Stage IV.  Her successes, her fears, her bucket list, her wants, her hopes…..all with humor and compassion continuing her teaching and inspiring to all of us.  She’s most deserving as my sole Lisa Award Recipient this year.  She’s a human force in the Power of One.

Her writings have changed the world touching the lives who are inspired by her strength and willingness to fight, even when no strength seems to be available.  So this year, my Lisa Award goes to Paula Ford Martin, again.  In her most recent writing on her blog, Paula writes;
:……but Tim told me a few days later that Dr. Chiang felt 6 months to a year was a reasonable expectation for me to still be on this earth. Of course, that doesn’t fit into my plans. I want at least a year to see my “babies” cross those stages and get their hard-earned diplomas. I know that the doctor doesn’t have a crystal ball and is just making an educated guess, but it did rock my world a bit to hear that answer. It’s also, strangely, given me a renewed sense of purpose. My goals haven’t changed, so I’ll just have to do what I can to make sure the medical timeline aligns with the goals.

There is no actual Lisa Award.  It’s just space of acknowledgement here in my column.  I’m going to change that and create an actual award and only give it when someone earns the Lisa Award Recognition twice.  Paula, my sweet and powerhouse friend, I will present yours at the reception after ‘your babies’ receive their diplomas.  Meet me there…….okay!

I love you friend.  Keep fighting.
I am a diabetes dad.
Please visit my Diabetes Dad FB Page and hit ‘like’.

Voices of Marjory Stoneman Douglas H.S………The World Will Hear

A few weeks after the tragic shooting at Marjory Stoneman Douglas High School in Parkland, Florida, I spoke to the parents of the two young men who have played a huge role in entertaining the crowd at our walk.  You see this family had to deal with their children being in the thick of it all, seeing things no child should ever have to see or experience.  It makes one shutter to think about it.

“So I am thinking the boys would be okay to skip this year……..”
Scott, their father, cut me off immediately.
“Tom, these kids are from Marjory Stoneman Douglas High School, we don’t skip out on anything.  Their little sister still has type one diabetes.  The boys will be there.”

Not only were they there, they crushed it.  One of the boys is our DJ and one is the ‘drone master’ taking pictures in real-time.  They are incredibly talented young men who go forward…..in the face of adversity. They are not merely good…….they’re incredible.

Heroes.

Before my kids were diagnosed, so many already know that my life was the theatre.  Being part of the NYC theatre scene as an actor was my life and even fortunate enough to be in one show for 14 years.  I watched a segment of last night’s Tony Awards, a celebration of theatre, as they introduced Melody Herzfeld.  She is the Drama Teacher for the Marjory Stoneman Douglas High School Drama Club who sat with so many students locked away in her office……staying away from danger.

That got my attention real fast.   A hero.

Every day she teaches students to set their emotions, all their emotions, and release them through the arts; giving all an equal voice to be heard.  As she stated in her acceptance speech as she was being honored; “…….letting the stronger be our collective voice supporting the rest needing time……..wanting to be heard.”

Not only did the Tony Awards Show tell her story,  but they introduced us once again, to some really special kids.  It must be a trait in the kids from this school; they do not just live life with their talents, they make ‘crushing it’, an art form.  High School kids being thrust upon the stage of the Tony Awards is nerve-racking enough, but asking them to sing in front of the biggest names to have ever graced the Broadway footlights is enough to buckle any knees.  But these are not just any kids, are they?  They are the kids from Marjory Stoneman Douglas; a school that does not know the meaning of halfway.  Listen.

Click here.
More Heroes.

So my world of diabetes and my love for the arts both being taught a huge lesson by true heroes, I am humbled.

I have come to the conclusion that this school never does anything half way which may have been the very same attitude that has taught the rest of the world that this school………..does not skip out on anything.  They are MSD kids; MSD STRONG.  Perhaps we should take notice of their voices…….and allow them to be heard.
I am a diabetes dad.
Please visit my Diabetes Dad FB Page and hit ‘like’.