Training Log – Week #8 – The Jesse Story – Why I Ride

Week #8, by the numbers:

0 miles run on the road. 15 miles on the treadmill. 0 miles on the bike, and 4 hours and 15 minutes on the trainer.

I had no two/day workout days. 2 rest days.

Average Blood Glucose: 123

Significant pattern of low blood glucose between 5:15am and 7:45am.

No significant pattern of high blood glucose.

Comments about training for the past two weeks:

I had a lingering cough that seemed to go away when working out.  The indoor workouts due to weather and schedule.  Hoping to break both bad habits this week.

The Jesse Story  – What I Ride

The reality I almost never allow myself to think about, and one in which I am in constant fear of living, or, of my family living, is the one of my friend, Michelle.  Four years ago, on February 3rd (2/3 or 23), she lost her son, Jesse, to Type 1 Diabetes.

I’ll be honest, I don’t like this topic. It scares me.  I could have been Jesse.  I could be Jesse.  Or Trent, Caleb, Hiedi, Caitlyn, Sarah, Chelsea, Brandon, or one of the many others who we have lost to Type 1 Diabetes.

And I have to hand it to Michelle, because she has rallied and faced her circumstances and helped others in the same position.  Leading in a subject matter where the #T1D community needs her.

I choose to ignore this reality and realize it at the same time (if that makes any sense), to maintain my focus on training and riding with the JDRF Ride to Cure program.  JDRF has been the #1 funding source for research on T1D prevention, treatment and cure therapies over the last 40 years.  And the Ride to Cure program is the #1 growing program in the organization.  I believe it’s because it brings the T1D community together with a focus on driving results.  The atmosphere is one of family.  An energy that just can’t be matched.  If you are in the T1D community, you just feel at home.  For those with no connection to T1D, you just get a feeling of wanting to help.

Mile 23 Jersey

 

The jersey worn in the photo above is the Mile 23 jersey, which is part of the memorial to the children we have lost to T1D.  The jersey holds the names of many children, Jesse’s and Trent’s on the shoulders and many others throughout.  The other part is Mile 23 of each of the JDRF Ride to Cure events, which we ride in silence.  We remember those we have lost.  We have lost some battles, but we are focused on winning the war.

Ride Finish with Kids

While the Jesse story is normally the focus, the other half of the story is that of Michelle’s response.  She has stayed in the T1D community and become a leader.  Working with those who have faced the challenges she has.  She works for Riding on Insulin, a non-profit snow boarding camp for those with T1D, empowering children to be active and engaged in the activities they want to enjoy.  She continues to rally with Team Honey Badger, the JDRF Wisonsin JDRF Ride to Cure Team.

Her story of fighting is an example of the mentality of the JDRF Ride to Cure program. Michelle fight’s.  JDRF Ride to Cure fight’s.  In spite of the challenges faced, the people in this community fight, painted in a corner, hungry for information, fists up and ready.

Our kids need us, that’s why we ride, and that’s why I ride.

If you want to know more about the JDRF Ride to Cure program, visit: ride.jdrf.org

Come for a bike ride with me, it’ll change your life.

 

Training Log – Weeks 6&7 – About Being Brave

Weeks #6 & 7, by the numbers:

28.9 miles run on the road.  11.5 miles on the treadmill.  87.3 miles on the bike, and 5 hours on the trainer.

I had no two/day workout days.  2 rest days.

Average Blood Glucose: 122

Significant pattern of low blood glucose between 6:00am and 8:10am.

No significant pattern of high blood glucose.

Comments about training for the past two weeks:

The past two weeks were a little weird, in that everyone in the family was sick, except for me….I’m normally the sick Dad, hiding under the covers for 3 days when everyone else was fine after 24 hours.  Oh well, I’ll take it, just kept on training.

About Being Brave

There’s been a lot of talk in the news and on Facebook this past week about brave people.  The Priests in the Ukraine, standing tall and peaceful among protesters.

Demetrius de Moors, the Atlanta, GA high school wrestler who just did the right thing.

Stephen Machcinski and James Dickman, Toledo, OH firemen who died in the line of duty.

These are all great examples of brave people.  No doubt about it.  However, I want to share with you what brave is in the T1D community.

IMG_6835The Study Participants-

People like my daughter and my niece, who are participating in TrialNet, a prevention study for those that have a blood relative who is T1D.  They participate because they are asked.  Not because they want to.  They go and allow themselves to be subjected to fasting mornings (without meals) blood work taken, and deal with highly anxious parents the whole time.  They think they are helping me, but in reality, they are helping the people that are years from being diagnosed.

The Parents of Those with T1D –

These parents face every day knowing the potential for disaster.  Essentially, they are helping make decisions about insulin delivery that, if a mistake is made, could kill their child.  The parents have to remain calm, allow their child to grow socially and still face the fact that they are solely responsible for their child’s health until they can educate and transfer care to their child.

The Kids with T1D –

They often don’t feel different, except when their blood sugar levels aren’t correct.  They are looked at differently and treated differently.  By other kids, by other kids parents, by educators and by the school districts.  It is most likely derived by fear, a typical human emotion.  And though not right, it often happens anyway.  But the children with T1D forge on and wake every morning knowing that they will face these challenges.  It takes guts to face the world every day when you know negativity is coming your way.

So – I will continue to train.  For my health, for the example for my children, and to show children with T1D that there is no need to pay attention to the negativity that they will face.  That they should not be afraid to face the day.

 

 

Training Log – Week 5 – What is Mikes Miles?

Weeks #5, by the numbers:

10.4 miles run on the road.  4 miles on the treadmill.  And 4 hours on the trainer.

I had no two/day workout days.  2 rest days.

Average Blood Glucose: 116

Significant pattern of low blood glucose between 6:20am and 8:05am.

No significant pattern of high blood glucose.

Comments about training for the past two weeks:

This past week was broken up a bit with some work travel and some significant cold weather.  I used it as a week to focus on the trainer and improve my cadence during interval work.

Mikes Miles – The Method Behind the Madness

The focus of Mikes Miles is multi-faceted, but let me give you the two main points:

Those families who live with T1D need help in two ways.  They need support for their family.  The need that support in care, knowledge and access to information.

They also need to an organization that is focused on improving the current standard of care and to find a CURE.

Mikes Miles is meant to support these two initiatives.  The Mikes Miles 5k at Cedarvale Winery is an annual 5k and 1 mile fun run (April 12th, 2014 at 10am)  that is organized to raise money for JDRF and to allow the local community to know there is a local resource for those with T1D.

With 80 people being diagnosed daily (40 kids and 40 adults), every community needs a reminder that there is someone local who can help them navigate the choppy waters.  Its a confusing disease to get used to managing, so a little help can go a long way.

The first person my parents talked to when I was diagnosed was a nurse, who was also a mother of 3, and lived with T1D.  She made all the difference in setting my family off down the right path.  Thank you , Jean.  I will always be grateful for your kind a loving words during such a tragic time.

Why JDRF?   Because it is the #1 funder of T1D research in the world.  The organization’s goal is to improve the lives of those with T1D by funding research in the areas of treatment, prevention and cure therapies.  Since I was diagnosed in 1982, research funded by JDRF has changed the way T1D is managed and drastically improved the lives of those living with T1D.  This organization has drastically improved my life.  With the threat of my children being diagnosed, I am proud to support them, and feel confident in knowing they are working to change my life, and ultimately cure T1D.  And it certainly helps that they were ranked in the top 5 in the US by Forbes Magazine last year for most efficient non-profits.  Greater than 82% of the money raised goes towards the mission.

Thanks again to everyone that has supported Mikes Miles (and JDRF) in the past, and I look forward to seeing everyone out at Cedarvale Winery again on April 12th!

Training Log – Weeks 3 & 4 – Motivation

Weeks #3 & #4, by the numbers:

29 miles run on the road.  11 miles on the treadmill.  139 miles on the road on the bike. And 1.5 hours on the trainer.

I had one two/day workout days.  4 rest days.

Average Blood Glucose: 127

No significant pattern of low blood glucose.

No significant pattern of high blood glucose.

Comments about training for the past two weeks:

These past two weeks were a hodge podge of getting out when I could and enjoying time with family.  Certainly maintained fitness, and spent more time on the bike (due to being off from work for the holiday).  Sure enjoyed it.  It’s good to break up training with something like this every now and then so you don’t burn out.

 

Motivation:

There are a number of motivating factors, but let’s start with the obvious one:  I hate having to figure out how many carbs are in my cake, so I don’t mess up my blood glucose levels.  I just want to enjoy the piece of cake.

Here are some stats about living with T1D from the Dawn Study (http://www.dawnstudy.com/) completed by Novo Nordisk.

2010 – New Jersey: 1 million people living with Diabetes, $9.26 billion in Direct Medical and Indirect Societal costs.

2010  – USA: 32 million people living with Diabetes, $299.3 billion in Direct Medical and Indirect Societal costs.

40% of family members report a high level of diabetes related stress.

61% of family members are worried about hypoglycemic (low blood sugar) events

These facts are true on the general scale, and they hold true in my life.  My family members are worried about my health, now and in the future.

But these items are NOT my true motivators.  When I am tired and don’t want to train, I think of my kids.  Abby-BloodDraw2

I have talked about how my kids are in JDRF funded prevention studies.  Jacob is in TRIGR (http://trigr.epi.usf.edu/) and Abby is in TrialNet (http://www.diabetestrialnet.org/).  Both are producing antibodies know to cause the development of T1D.  Abby is producing all 4 and Jake is producing 2.  What the TrialNet research results to date tell us is that it is most likely just a matter of time before Abby is diagnosed, and Jake will most likely be diagnosed at some point in his life.

I can’t stop it from happening.

There is no cure.

So, what’s a father to do? (A Type A nut-job, control freak of a father at that?)

I’ve teamed up with the most aggressive folks in the world of treatment, prevention and cure therapies:  JDRF (www.jdrf.org)  There is no better organization focused on improving the lives of those living with Type 1 Diabetes.  Not to mention, they were listed as one of Forbes Magazines Top Five Non-Profits last year because of their efficiency rating.

I’ve worked with my JDRF team mate, Scott Kasper, to start Hope on 2 Wheels.  Riding between camps for children with T1D, this ride team is focused on motivating kids to live successfully with T1D.  We partnered with Riding on Insulin (http://ridingoninsulin.org/), a non-profit program that has snowboard and BMX camps for kids living with T1D.

Support the research, support the kids who are currently living with T1D, and now to test the system.  The system?  Yeah, my body.  My T1D body.  Push the envelope, and do it while my kids are young and impressionable.

They need to see their T1D father push the envelope, swing for the fences.  Fail, overcome failure, and succeed.

I need to push my physical capabilities, so I know how a T1D body will react.  Because its different, no doubt about it.  Training, fueling, recovering…..its different than someone without T1D.  So, I am going to experience it, so that when my kids get to high school and college, and participate in athletics, I will be able to speak to their focus, drives, and hurdles. If they don’t participate in athletics at those levels, then I have merely provided for a life lesson in facing adversity and overcoming.

It’s starting to work, too.  The kids in the neighborhood decided to sell lemonade a couple of weeks ago (because it was in the 60’s!).  My daughter asked or talked most of the kids in to donating their profits to the JDRF.

IMG_6602

 

So, its great that $9 is being donated to the JDRF on behalf of the kids of the neighborhood.  However, I am just excited that my daughter understands how important JDRF is in our lives.  She thought she was just helping me and others who currently live with T1D.  She didn’t even realize that she was helping herself.

That’s why I’m training for long distance triathlons.  That’s what motivates me.

Thanks for everyone’s support!

Training Log – Week #2

Week #2, by the numbers:

25.2 miles run on the road.  8 miles on the treadmill.  And no time on the trainer.

I didn’t have any two/day workout days.  2 rest days.

Average Blood Glucose: 107

Pattern of low blood glucose: Between 1:40am and 9am.

No significant pattern of high blood glucose.

Comments about training this week:

I was tired.  I mentioned it last week, but I was focused on trying to address the middle of the night low blood glucose levels.  I was successful for a few of the nights, but not all of them, and the unsuccessful days lead to tired and a lack of energy for the two/day workouts.

So, in order to make the workouts more efficient, I made Wednesday’s workout an interval workout and today’s long run included up tempos.  This helped me at least work on increasing VO2max without getting the significant work in.

Fuel Choices for Workouts:

So, let me give you a little background.  When our kids were born, Breigh, an anthropolgy major, decided that we were going to live like our ancestors….for the most part.  So, if we can’t hunt it, or gather it, we don’t eat it. (There are many exceptions, but we have significantly reduced the amount of manufactured food we consume.)

 

 

 

 

Kale Infused Recovery Smoothy

The above is a kale infused recovery smoothy that I used this past week.

Ingredients:

Protein powder, carrots, orange, kale, coconut water, coconut milk, strawberries, pineapples, mango, banana and coconut……..and chia seeds.

I am not sure what all of the ingredients are doing for me, except for the following facts:

1. I consume this beverage (or something like it) within 30 minutes of finishing a workout or long run/ride.

2. My body recovers quicker as a result of getting this fuel into my body.

I am fortunate to have support of my wife, and her knowledge about food that I have relied on her for this knowledge base.  She’s also a great workout partner during those days when you don’t always wanna go….

Snow Run

 

Because she’s as competitive as ever, as soon as I think about whining, she’s there reminding me of why I’m doing this. (More about motivation next week!).

Here’s a Sample Day of Eating:

Last Sunday, December 8th – (I do pretty good, but I need Breigh’s help, as you’ll see below)

12 Mile Run in the morning fueled by 12 oz. of ginger ale and 1 piece of pizza about 20 minutes prior to the run.

Post run – 30 gram recovery smoothie made of Banana, coconut milk, vanilla protein powder, Trader Joe’s Peanut Butter, pumpkin butter.  I also had a cup of coffee.

Lunch – Trader Joe PB and Pumpkin Butter sandwich on multi-grain bread

Snack – Homemade bean soup (w kale, of course) and yogurt (See below)

Good Soup

 

Dinner – 1/2 cup of pasta, 3 meatballs, and extra sauce

Snack – Multiple apples, 3 bites of pumpkin pie, piece of extra dark Trader Joe’s chocolate.  (I was fighting going low, constantly lowering my basal rate at the same time)

Hopefully, this gives some insight into an average guy who’s trying to do some above average things.

Next week –   “Who in their RIGHT mind would choose to compete in 1/2 Ironman and Ironman?”

Training Log – Week #1

So, here’s what we have so far, by the numbers:

25.4 miles run on the road.  7.1 miles on the treadmill.  And 3 hours on the trainer.

4 days of two per day workouts.  1 day of 1 workout.  2 rest days.

Average Blood Glucose: 118

Pattern of low blood glucose: Between 3:50am and 10:45am.

No significant pattern of high blood glucose.

Shiv-Workout

 

So, first things first.  I have GOT to make a change to my basal rates so that I don’t go low at 4am.  Waking up to the CGM has me tired and I drastically need to get better rest.  My only complaint about the workouts is that I am tired.  But I won’t be as tired if I am not getting up to treat lows.  Also, my body will be getting the rest it needs, and I’ll be better prepared for the next workout.

Second, I must adjust my basal rate for the evening between 6pm and 9pm.  5 of the 7 days, my trend has me dropping between those hours, and 2 of the nights I started workouts with my blood glucose dropping.  Well, it wasn’t dropping, really, its just that there was a slight down trend (not arrows) and as soon as my workout started, I was dropping like a rock.  This just about ruined these workouts.  If I’m going to take this time from my family and work out, I need to make sure that every one is efficient and I get out of it what I need for performance.  Otherwise, its just wasted time.

So what’s coming this week?

Multiple 2/day workouts.

Intervals, Sub LT’s and long runs/rides

Focus on Fueling (for performance & recovery) – My wife said she’s bringing back the Kale and Beet Juice Smoothie……what did I get myself into?  I thought steak was the recovery meal?

Stay tuned to see who wins….

The Thanksgiving Plan

As a boy, I always enjoyed Thanksgiving because I got to see my extended family…..Aunt, Uncles and Cousins.  Growing up in Western PA, we didn’t see them often, but Thanksgiving was one of those times when we went to visit my Grandparents and the family in Eastern PA.

I looked forward to these vacations every year, and the smell of roasted turkey in the oven takes me back, no matter where I am.

IMG_6412

Ironic, yes, that I was diagnosed with an autoimmune disease the day after Thanksgiving, and it is my favorite holiday.  That part hasn’t escaped me.

It all started the day after Thanksgiving, 1982, and every year, I try to celebrate the fact that I am alive, and living healthy.  This year was no different and I celebrated with a group ride with my wife and some of our friends. I celebrated with a family fun run at the Haddon Township Turkey Trot.  I celebrated with a stop at the local bike shop (more about my stop at Action Wheels later).  I celebrated with a little family skate at the local rink.  I celebrated with an impromptu 2nd Thanksgiving dinner with some of the family members I had dinner with on Thursday night.  It will long be known as the “Pie and Ice Cream Milk Shake” Mexgiving.  (Some of us had black bean burritos and the others had left overs).

There were significant conversations this weekend about blood glucose levels and specific insulin requirements (especially for said milk shake).   You see, everyone who lives with T1D, conducts biochemical experiments multiple times a day that will lead to success or failure of that day.  Every person is different in terms of biological make up, and then throw in their own personal preferences and lifestyle decisions surrounding food and activity?  Yeah, not exactly predictable.  So, how does someone living with T1D come across predictability in their life?

I use exercise.  Best prescription a doctor could give me.  I believe some form of exercise is good for everyone.  Move it or lose it.  Find something that makes you happy and go out and do it.

Feet

Here are my reasons for exercise:

  1. I like it
  2. I like the way it makes me feel
  3. I like doing things outside with my family
  4. It helps me deal with my potential “milkshake problem”
  5. It helps me increase my sensitivity to insulin
  6. It helps me deal with my multiple pre-dispositions to cardiovascular disease
  7. It helps me “feel” normal (non T1D)

I am thankful for the T1D wisdom that has been shared with me from the time of diagnosis to my recent conversations with my JDRF Ride to Cure buddies and my Hope on 2 Wheels Team.  The stories and management techniques they have shared have been incredible.  However, it is a knowledge base that is tough to document.

I believe that we need to find a cure.  So, Breigh and I organize a 5k run to raise money to fund research for a cure, and better treatment for those living with T1D. (You can follow us on Facebook here:  https://www.facebook.com/mikesmiles.jdrf?fref=ts )  We participate in the JDRF Ride to Cure with the South Jersey Ride Team as part of this effort.  You can find out more about the JDRF Ride to Cure program here: ride.jdrf.org

I believe that those living with T1D need to be inspired.  So, my friend Scott Kasper and I, started Hope on 2 Wheels to inspire those living with T1D to challenge themselves with the goals they always wanted to achieve. (You can follow us on Facebook:  https://www.facebook.com/hopeon2wheels , Twitter: https://twitter.com/hopeon2wheels , or on the WWW:  http://ridingoninsulin.org/teams/hope-on-2-wheels/ )

I also believe that those living with T1D need to hear the stories and the information.  How is it done?

Except, that a middle aged man’s life isn’t normally all that exciting.  So, it’s time to turn the screws a little and make it more fun.

2014 – 70.3 Triathlon goal (1/2 Ironman distance)

2015 – 140.6 Triathlon goal (Full Ironman distance)

So, for the foreseeable future, I will be writing about my training, racing and living with T1D under a non-typical lifestyle…… training for triathlons.

Why would I make this investment in time and money?  Great question.  Let’s first review the hurdles I have to face:

  1. I am 37 years old.
  2. I have a full time job.
  3. I am married with 2 children.
  4. I have exercise induced asthma
  5. I live with Type 1 Diabetes

These are significant hurdles.  I will need to balance my time and responsibilities.  However, the information I will gain will be invaluable.  Information such as: how far can I push myself, what do I need to do to manage blood glucose levels through the extreme training conditions, what style of diabetes care works for the different events, what types of devices work best for the different events, etc. etc. etc.

The effort is worth the information.  You may have seen previous blog posts regarding my children’s likelihood of developing T1D.  I especially want this information so that I can be prepared for helping them manage T1D the best they can as they face whatever challenge they decide they should.  With T1D or not.

And awaaaay we go.

2010 Philadelphia Marathon

2010 Philadelphia Marathon

Thanksgiving – My Favorite Holiday

It has always been my favorite holiday. The meaning is just……right…..

Ok, ok, there seems to be some lack of clarification about where and when modern day Thanksgiving started, and why. However, its really simple, as far as I’m concerned.

Thanksgiving is just that. A day set aside to GIVE THANKS.

(My dad always told me to keep it simple)

I remember the days when I was young and my family would get together for the holiday. Sometimes we were fortunate to have my Mom’s side of the family travel to see us and spend a couple of days. We didn’t see them much, so the constant movement in the house of Mom, Aunt Pat and Gram making dinner was always the basis of the excitement for the weekend. The smells would fill the house and provide for an aromatic environment which I loved.

Thanksgiving 1982 was one for the books. It’s where my family life got real, real quick. The day after I was diagnosed with T1D at the age of 6.

My family’s reaction?

Mom: I’ve heard of this before, what do we do?
Dad: what is this and what do we give him to get rid of it?
Older Brother(Age 10): thanks for getting rid of him for a while.
Younger Brother (Age 2): well, his age speaks for itself.

The atmosphere in the family changed. Both of my parents were tense, my older brother was walking on egg shells and me? I don’t know, I was home sick for the first night, but after the nurse brought me a snack, I settled right in.

The month of November is Diabetes Awareness Month, but for me, it’s a month of giving Thanks. I’m thankful for having the parents that treated me like a normal kid and forced me to love successfully. They sacrificed many things so that we could afford the healthcare I needed.

I am thankful that I had access to healthcare and was fortunate to have a top notch endocrine taking care of me. From the RN’s, CDE’s and Endo’s, I was well educated and had info when I needed.

I am thankful for the JDRF, and the many volunteers who have sacrificed time, energy and significant dollars to fund research since 1970. This changed the landscape for care, management, lifestyles and long term health outcomes for those living with T1D.

Without all of these, I would not be a healthy adult with a great family. I don’t know where I would be, what I would be doing, or what I would be capable of doing.

I am Thankful.

November is Diabetes Awareness Month, so starting the day after Thanksgiving, on my 31st anniversary of diagnosis, I will begin sharing my story of living with T1D. Not the pretty, painted picture I want everyone to see, but the truth……

The good and the bad. The truth.
Through daily living, working, working with my wife to raise our kids, training and chasing my athletic dreams. Try to set a good example for our kids and trying to manage T1D all the while…..so that I can see my kids grow up and enjoy retirement with my wife.

So stay tuned, we’re gonna learn a little and have some fun while doin’ it.

“No one ever finds life worth living – one has to make it worth living.” -Winston Churchill

Lets make somethin’

TrialNet – Prevention Stage Begins

IMG_4937

 

The box came in the mail the other day.  It needed to be refrigerated and the study coordinator was a little anxious to know when I had received it.  The truth is, I didn’t want it, or to have to think about it.

But I knew I had to open it, and prepare myself to have the conversation with my daughter.

IMG_4938The box of bottles of pills, either the placebo or the active drug, the instructions and a pill box. It was really that simple.  Keep them in the fridge, take one every day, and let us know if your child gets sick.

But the emotion tied to this is much greater.  While I have never really been upset that I live with T1D, I don’t wish it upon anyone else, and I certainly don’t wont my daughter to live with it.

But that is what parenting is all about.  “Manning Up” to the things your kids need you to.  “Stepping Up” to the plate when your kids need you.  Doing what you can to protect your children.  My emotions, weaknesses and fears don’t count here.  They don’t mean a thing. The only thing that matters is whether or not Abby is ok.  That’s it.

So, my wife and I had the conversation with her, and it went something like this:

Me: “Abby, your study is a little different from Jake’s”

Abby: “Aww man, do I have to go for more blood work already?”

Me:  “No, your study requires that you take a pill once a day.”

Abby:  “Oh, that’s it?”

IMG_4940

 

And it was that simple.

One step at a time, one pill a day.  Immeasurable amount of HOPE here at the Chadwick house.

A Parents Biggest Nightmare

We knew.  We knew it was a possibility.  For either Jake or Abby, one or the other.  Or both.  And both is still not out of the question.

We intended on participating in the TrialNet study, with my old friends from Children’s Hospital of Pittsburgh, because we wanted to give back, we wanted to stay aggressive with our kids IN THE EVENT something were to happen.

The TrialNet study (http://www.diabetestrialnet.org) is a prevention study that is broken into two phases:  1. Observation, and 2. Active Prevention.

Abby has been in the study since 2010 and gets annual blood work to test for the Antibodies that are known to kill islet cells and cause T1D.  The antibodies are called: GAD65, ICA, ICA512, and MIAA.

As a child of someone with T1D, your chances of developing T1D is 4-5%.  Once you produce two (2) of these antibodies, your chances go up to 50%.  Both of my children have been developing two (2) antibodies for the last couple of years.  At this point, Abby’s body is attacking itself.  The immune system is producing four (4) antibodies that are very successful at killing islet cells.

It is not a matter of if, it is a matter of when.  What do you say to your 7 year old daughter about this?

IMG_4811

Reality –  There’s an incredible amount of emotions that my wife and I have experienced over the last month since we received the results.  And she hasn’t even been diagnosed yet.  It could happen in the next day, or not for 10 years.  The likelihood is that it will happen sooner than later, but there is no way to know.

The reality is that my wife and I have the ability to get our head wrapped around the idea of her living with T1D.  We are not going to be surprised by the diagnosis, and we can plan (as much as one can) for the day when it happens.

The reality is that there is better information and better technology than when I was diagnosed in 1982.  Outcomes for those living with T1D are fantastic.

The reality is that none of this matters to a mom of a T1D at 2am when they are testing their child’s blood glucose levels.  None of this matters to the child with T1D when they just want to fit in.  None of this matters to a women with T1D who wants to have healthy children of her own.

Parenting a T1D:

I have had a unique perspective, living with T1D for the last 30 years.  However, I have not had my mother or father’s experience.  I have never had to go to work after being up half the night worrying about my child’s high or low blood glucose levels.  I have never had to have a conversation with my daughter about how to talk to their coach about having T1D.  I have never had to support her as she wonders if boys will ever ask her out on a date.

Truth is, my wife and I have a lot of parenting to do.

The Prevention Part of the Prevention Study:

TrialNet’s active prevention portion of the study randomize’s Abby into one of the two groups in the study: active drug, or the placebo.  It is double blind, so we will not know what she is receiving.  The drug is oral insulation, and taken orally every day, has shown to have the ability to postpone diagnosis up to seven years.

Oral insulin supposedly acts like a vaccine to temporarily keep the active antibodies from destroying the islet cells.

I HOPE that this is all for naught, and my daughter is the 1:1,000,000 (I’m making this number up, as I hope there’s a chance it won’t happen) that doesn’t get the disease.

I HOPE oral insulin is a good answer for my daughter.

I HOPE I am prepared to help my daughter navigate the world of living with T1D as my parents did for me.

I HOPE for a cure.  As soon as we can get it.  But until then, we will fight to fund the research needed to improve care, and possibly prevent the diagnosis for all those who are diagnosed or will be.

5k2ndPlaceAbby