THE STORY OF ONE FAMILY'S JOURNEY WITH TYPE 1 DIABETES AND CELIAC DISEASE.
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Wednesday, April 18, 2012

Transforming Lives - Notes

Transforming Lives:  Diabetes Today and Tomorrow was an incredible outreach conference event sponsored by the JDRF Desert Southwest Chapter.  Today I'd like to share some of the notes Mr. Rose and I took during our conference experience:

H. Peter ChaseH. Peter Chase, MD is the Executive Director, Clinical Director, Director of Pediatric Clinic, Emeritus and is currently Professor of Pediatrics at the Barbara Davis Center for Childhood Diabetes, University of Colorado.  Dr. Chase studies the use of continuous glucose monitors in youth and the development of algorithms to prevent hypoglycemia using a closed loop system and screens family members of patients with type 1 diabetes to detect those at high risk for possible participation in prevention studies.  He is the well-known author of the three most frequently used family education books using the Pink Panther character as well as over 300 research articles and book chapters.  Dr. Chase will deliver the opening keynote.

The day started with an opening keynote by Dr. Peter Chase.  Dr. Chase authored Understanding Diabetes...also known as "The Pink Panther Book".  "The Pink Panther Book" was an instrumental tool for Mr. Rose and I after Sugar was discharged from the hospital following her diagnosis in 2005.  I read it from cover to cover, highlighted many sections, earmarked numerous pages, and carried it with me in her diaper bag everywhere for the first several weeks.  It truly was the foundation for our crash course in Type 1 Diabetes management.  After coming home, I could barely remember anything we learned during her hospitalization.  Thank goodness for "The Pink Panther Book"!  Suffice to say that, for me, the opportunity to hear Dr. Chase speak was quite an honor.
  • A1c target goals that he believes lead to the best chance of life without diabetes-related complications: 
  1. Ages 6 years and under:  7.5% - 8.5%
  2. Ages 6 years thru 12 years:  Less than 8.0%
  3. Ages 13 years thru 19 years:  Less than 7.5%
  4. Over 19 years:  Less than 7.0%
  • Noted that DKA is the leading cause of death in people with Type 1 Diabetes who are less than 30 years of age.
  • Discussed importance of not over treating low BG's, and reminded audience that a BG of 80mg/dl is a NORMAL BG.  80mg/dl requires treatment if the person is believed to be dropping further (i.e. "feeling low", other physical symptoms, or an accurate CGM reading indicating that blood sugar is dropping). Stated that a "true low" BG is less than 60mg/dl, and emphasized that everyone spends part of their day in the 60mg/dl - 70mg/dl range.
  • Reported that globally the incidence of T1D is rising at a rate of about 3-5% per year.  It is believed that "something environmental" can be attributed to the rise.
  • Also reported his research indicates that approximately 75% of "bad lows" occur at night.
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Lauren Woodward TolleLauren Woodward Tolle, Ph.D. is a licensed clinical psychologist in Denver, CO.  Lauren completed her doctoral work at the University of Nevada, Reno and postdoctoral work at the University of Colorado School of Medicine. Lauren also has a Master’s degree in Applied Health Psychology from Northern Arizona University. Lauren’s research interests include evaluating clinical outcomes of evidence-based practice in primary care as well as pediatric settings.  Lauren has conducted research and published in the area of improving diabetes management and family communication for adolescents with type 1 diabetes. She greatly enjoys working with this population. In her spare time, Lauren enjoys spending time with her family including her newborn son, Liam, in beautiful Colorado.

Next, I attended "The Teen Age:  Managing Type 1 Diabetes During Adolescence".  I don't have very many notes from this session, because Tink had become restless in the KidZone and I was called out to tend to her.  (She just needed her mama for a bit...well, at least until Cherise offered up her snazzy iPhone and found a Dora show for her to watch.)

Dr. Woodward Tolle authored a workbook titled Help with the Hard Stuff.  This workbook is designed for T1 teens and their parents to work through over the course of 9 weeks.  Here's the description from Amazon:
Help With the Hard Stuff is a workbook designed for teens diagnosed with Type 1 diabetes and their parents. Living with Type 1 diabetes is difficult enough for adults, but for teenagers it adds to the already increased stress of social pressures, self-awareness, and responsibility. This workbook can help the whole family better understand basic diabetes information and important facts associated with good diabetes care. It also provides evidence based cognitive-behavioral strategies that can be helpful in facilitating health behavior changes, such as when problems arise with treatment adherence. Help With the Hard Stuff is designed to assist in making the transition in care from parent to adolescent smoother and more successful. It does this by addressing key factors that are associated with better adherence such as self-monitoring of blood glucose, coping effectively with a chronic illness, gaining social support, improving family communication. It also assists parents in learning how to provide autonomy-promoting support and provides a glossary of commonly used terms in addition to a section with resources for more information.
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Gary ScheinerGary Scheiner MS, CDE is the Owner/Clinical Director of Integrated Diabetes Services.  A certified diabetes educator, masters-level exercise physiologist and person with type 1 diabetes, Mr. Scheiner has dedicated his professional life to improving the lives of people with insulin-dependent diabetes.  Mr. Scheiner has authored four books:  You Can Control Diabetes, Think Like a Pancreas, The Ultimate Guide to Carb Counting and Get Control of Your Blood Sugar.

Meanwhile, Mr. Rose attended "Managing Blood Sugars During Sports and Fitness Activities". Gary Scheiner authored Think Like A Pancreas, another book I would consider to be one of the most helpful tools I've encountered in preparing me for the journey of raising a child with diabetes. I've also attended several of Gary's online classes through Type 1 University, and not only do I find him to be a wealth of valuable information, but he's an awesome presenter as well! 

  • Optimal BG for strength, stamina, speed/agility, flexibility, safety, and mental sharpness is 140mg/dl.
  • If exercising for greater than 90 minutes, small snacks should be taken without insulin coverage during the duration of activity.  (An example would be a couple jelly beans periodically while exercising.)
  • Once the temperature reaches 90 degrees, insulin begins to break down, and lose it's effectiveness.
  • Other variables that affect exercise:
  1. Active insulin
  2. Insulin site
  3. What has been eaten
  4. When it was eaten
  5. Emotional state
  6. Temperature and humidity
  7. Pain/Discomfort with activity
  8. Amount of activity


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Manny HernandezManny Hernandez heads the Diabetes Hands Foundation, a nonprofit that connects, engages and empowers people touched by diabetes through its social networks, TuDiabetes.org (in English) and EsTuDiabetes.org (in Spanish) and programs like the Big Blue Test and No-SugarAdded Poetry. Diabetes Hands Foundation offers information and support to nearly 200K people around the world every month.
Cherise ShockleyCherise Shockley was diagnosed with Type 1.5/ LADA (Latent Autoimmune Diabetes of Adults) in 2004. She is the Founder of Diabetes Social Media Advocacy (DSMA) a real-time communications resource for the diabetes community, their family members and caretakers. She is moderator of the DSMA twitter chat (diabetessocmed.com), and co‐host of “DSMA Live” (blog talk radio show). Cherise is a contributing author to “MY SWEET LIFE: Successful Women with Diabetes.” 
Bill WoodsBill Woods  is the founder of 1HappyDiabetic.com a website that encourages people with diabetes to live a happy and healthy life.  Mr. Woods  was awarded the 2009 TuDiabetes.org Creative Mind award voted on by the diabetic online community.   His award winning videos for “Making Sense of Diabetes” led the way in spreading awareness of diabetes through internet video creation.

NEXT UP:  The DOC: Diabetes Online Community!  HOLLA!  WOOT WOOT!  I had the honor of introducing these awesome speakers to the audience :)  And they had some pretty interesting things to share...

  • Social media isn't a fad.  It's a fundamental shift in the way we communicate.  
  • If Facebook were a country, it would be the THIRD largest populated country in the world.
  • Together the DOC has completed and shared petitions, participated in the Big Blue Test, and battled misconceptions in the media.
  • Ways to evaluate social media resources:
  1. Does it agree with clinical standards?
  2. Are there accessible and readable privacy policies?
  3. Are there controls on sharing personal data?
  4. Are there honest disclosures?
  5. Are there any voluntary accreditations?
It was fun to see some familiar faces during the presentation, even though they weren't there in person... Hi Kelly, Mike, George, and Scott!


And I laughed when my Facebook page popped up there...


Anyway, the DOC session was fun to watch unfold after several conference calls spent piecing it together.  I thoroughly enjoyed every moment of the time I was able spend with my friends, and hope to have the chance to hang out with them again :)
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Aaron KowalskiAaron J. Kowalski, Ph.D., oversees JDRF-funded research aimed at accelerating the delivery of therapies that will help keep people healthy while living with type 1 diabetes, minimizing their risk for developing diabetes complications, as well as therapies that will help those who have developed diabetic complications. Dr. Kowalski is an internationally recognized expert in the area of diabetes technologies and has been a leader of JDRF’s Artificial Pancreas Project, a multi-million dollar initiative that began in to accelerate the progress toward a closed-loop automated insulin-delivery system. He has authored numerous articles in the field, including a landmark study in The New England Journal of Medicine which revealed the effectiveness of continuous glucose monitors in type 1 diabetes. Dr. Kowalski has traveled widely across North America and abroad describing diabetes research progress, and is known for his ability to translate science into easily understandable concepts.  Dr. Kowalski will deliver the keynote research update.

Dr. Kowalski delivered the closing research keynote address.  I have to admit that I didn't take many any notes as I was captivated by the oddly familiar inspiration happening inside.  I remember attending research updates shortly after Sugar's diagnosis, and feeling empowered and motivated.  Somewhere in the last few years, I lost my ability to feel those things about research and technology.  I mean, I've kept up with it, but I often find myself building a wall around my bubble of HOPE.  Rather than allow it's energy to permeate my heart and soul, I tend to turn off the switch and move on with the day-to-day grind of raising a child with diabetes.

It felt good to feel hopeful again.

Anyway, I had the pleasure of hearing Dr. Kowalski a few years ago, and remember thinking that he was so personable and easy to understand.  Sometimes "research chat" gets over my head and intimidating, but both times now that I've heard him, that hasn't happened.  I'd highly recommend anyone take the opportunity to hear him if you have the chance.

I found comfort when he discussed the Artificial Pancreas Project.
I found comfort when he discussed micro/macro encapsulation and beta cell regeneration.
I found comfort when he discussed potential vaccinations to prevent T1D from developing.

I found HOPE (again) in Treatment, Cure, and Prevention.

This is Part 2 of a 3 part series.  Stay tuned as I share my closing thoughts and personal impressions. More on Transforming Lives...


Part 1:  Transforming Lives - Overview 
Part 2:  Transforming Lives - Notes
Part 3:  Transforming Lives - Closing Thoughts
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6 comments:

  1. Great post Wendy! You had an AMAZING line up of speakers (above and beyond the fantastic DOC personalities)!

    Thanks for taking so many notes and sharing with us. :-)

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  2. Thank you soooo much for sharing the info. that you gathered from this conference! I would have loved to have been there :) Looking forward to reading more!!

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  3. Wow! What an awesome event! Next time I will have to take a run out to the AZ to join you all! AWESOME!

    Thanks for posting this! Cool stuff indeed!!!

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  4. Thanks for sharing, Wendy...sounds like an awesome conference! :)

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  5. informative! entertaining! infotaining! thanks for sharing. :)

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  6. Loved reading your notes...thanks for always thinking of us and allowing us to read them!

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While I'm happy to share our experiences with what works, and what doesn't work, for the management of Type 1 Diabetes and Celiac Disease in our house, please do not mistake anything you read here for medical advice. Decisions regarding your/your child's health care should be made only with the assistance of your medical care team. Use any information from this blog at your own risk.