http://type2diabetestreatment.net/diabetes-mellitus/patient-voices-winner-randall-barker-advocates-for-himself-and-daughter-with-diabetes/
Congrats again to the 10 winners of our 2016 DiabetesMine Patient Voices Scholarship Contest, announced earlier this summer! Over the next several weeks, we"ll be featuring an interview with each, delving into their stories and POVs on the impact that diabetes technology is having on all of us.
This all leads up to our annual DiabetesMine Innovation Summit, planned for the end of October this year in San Francisco. This invite-only forum brings together key movers and shakers in the diabetes industry, regulatory, medical, tech and patient advocacy communities -- and we"re excited to extend a scholarship to our PV winners!
First up, meet Randall Barker, a longtime type 1 in North Texas who also pulls double duty as the father of a daughter with T1D. He was recently profiled on the American Diabetes Association"s blog and penned a guest blog at Beyond Type 1. We"re happy to introduce him here today.
(Thanks to my colleague Mike for his work on this first in our series of interviews.)
An Interview with Randall Barker, Type 1 and Diabetes Dad
DM) Hi Randall, can you start by sharing how diabetes came into your family"s life?
RB) I was diagnosed in May 1991 at age 10. In fact, I celebrated my 25th “diaversary” recently. I wasn’t symptomatic at all, and it was only during a sports physical that additional tests were ordered that led to my diagnosis. My daughter Emma was also diagnosed at age 10, in July 2013. She was also not symptomatic and was diagnosed after irregular results from a random sick visit at the doctor office.
How has that "T1D bond" affected your relationship with your daughter?
My outlook on diabetes prior to my daughter being diagnosed was akin to burnout. When she was diagnosed that all changed. I often say this, "My longtime curse finally became my blessing."
We have a very close relationship since she became diagnosed. We both go through the daily tasks associated with being a PWD (person with diabetes), but having that direct family member who is also a PWD seems to help. We live in a very rural community (population about 6,600), yet in my daughter"s grade of about 120 kids there are four T1Ds. She has friends who are T1, but it"s different when an immediate family member is living with this.
Do you help each other out with day-to-day BG control issues?
Yes, we actually have a system of checks and balances where we each keep each other accountable when it comes to diabetes. She comes to me for experience and with questions and any issues that come up. For me, it"s sometimes difficult. I want her to have all the freedoms she wants, as well as experience, but I don"t want her to tread too far. It"s a thin line that I walk, I try not to impose so much that it will cause her to resent diabetes like I did growing up. At the same time though, I have to play the enforcer and not allow her to self-destruct.
One thing that makes it easier for her I believe is the tech aspect that I have knowledge of. She has had issues with her pump and other devices before where these problems are easy fixes for me. So that"s always nice.
Is your daughter OK with being open about your mutual diabetes, or does she find it embarrassing?
At times I do embarrass Emma, but for the most part she goes along with whatever I do. When she was in the 5th grade she welcomed the idea of having a "school walk" for diabetes at her school. We did one with the ADA and her school raised over $3,000. Fast forward that one year to when she was in 6th grade and junior high, and she begged me not to have one at her school. I respected that because I didn"t want to embarrass her. She does get involved with the community walk that I direct now, and she enjoys it.
What do you do professionally?
I am a laboratory operator and chemist. Unfortunately my field is not on the medical side of chemistry, but rather it deals more on environmental things. I work in a lab at a power plant, so my job deals with the chemistry of the water coming into the plant, being used by the plant, and leaving the plant. I"m heavily involved with other environmental elements related to the plant as well.
What are your thoughts on the state of diabetes technology and innovation?
Currently things are exciting and there seems to be some promising progress being made. I"m excited to see the "closed loop system" or Artificial Pancreas is expanding clinical studies and seems to be getting close to another round of Phase II trials. I"m also excited about the encapsulation project from ViaCyte. While neither one of these are cures, I feel they are progress in the right direction.
I also am pleased with the "explosion" of CGM systems and remote monitoring capabilities. I feel that the NightScout innovation really pushed the big-name Pharma companies to work on better systems in regards to CGM and remote or cloud-based monitoring. I personally am not afraid to "hack" a piece of medical hardware to achieve a result, but if I don"t have to then that"s even better.
Yes, do-it-yourself diabetes tech is booming! Can you tell us about a time when you went all MacGyver?
I was a user of the NightScout system not long before Medtronic released their own version (Minimed Connect). It was nerve-wracking to "hack" a piece of equipment especially a medical device.
Can you tell us about starting a diabetes non-profit? What is the goal of the group you created?
I started my own nonprofit agency to assist with raising awareness of diabetes in the local communities around me -- as I live in an area that is over two hours away from the big-name groups like the American Diabetes Association and JDRF.
Each year, I organize a 5K run and walk that centers around diabetes called "TEXOMA D.R.A.W.," where D.R.A.W. is the acronym for Diabetes Run And Walk. There is quite a story behind that event. When my daughter was diagnosed, I really jumped on the ball as far as trying to raise awareness. In trying to do that I started this event to be very similar to the ADA "Step Out" or JDRF "Type One Walk." So, with help of a small group of volunteers we organize this event from looking for sponsors to logistics and everything else. This will be the 3rd year for the event, held in November. While not a huge event, we attract participants and crowds of 200-350 people -- which always amazes me.
What do you do for both the ADA and JDRF in your area?
Even though their chapters are not right in my territory, for the past three years I"ve served on the World Diabetes Day Symposium Committee. This is an event organized by the Committee and the Dallas chapter of the American Diabetes Association. It brings in vendors as well as people who have an association with diabetes. Various medical professionals and experts give speeches. There"s typically a roundtable discussion with some of the area employers who usually speak on some sort of medical topic.
Currently, I"m also a mentor for JDRF. When a new family in the area has a family member that is diagnosed with type 1 and they reach out to JDRF, then I"m typically the first contact to interact with them. I got a chance to work on the "Promise to Remember Me" initiative where my daughter and I both spoke to U.S. Congressional and Senate members about issues related to diabetes.
Wow! Any other diabetes advocacy efforts we should know about?
I"m an active member of a local pediatric diabetic support group know as the "Sugar Stompers"!
And for the past two years I"ve served as the "patient representative" on the Regional Diabetes Board for United Regional Health Care System in my area.
I also serve as a certified peer instructor for DSME classes and help teach classes in the community in a program known as DEEP, for Diabetes Empowerment Education Program. These courses help provide skills to diagnosed diabetics typically who are type 2.
Please tell us why you decided to enter the DiabetesMine Patient Voices Contest this year?
I am always looking to expand my knowledge when it comes to diabetes. Even though I"ve been diagnosed over 25 years, you are never too old to learn something new. With the way the advancements are happening, I"m excited to learn about anything new coming up on the horizon. And I hope I can help pass on what I learn.
What are you most excited about for the DiabetesMine Innovation Summit?
One of the things that excites me the most is simply the chance to meet an incredible group of people who seem to have as much passion as I do about advocating and raising awareness. Also some of the people I hope to meet can pass on ideas to always put a positive spin on diabetes, which is so needed.
Thanks, Randall. We"re excited to include you in the Innovation Summit and the lively discussions that will surely take place there!
Disclaimer
This content is created for Diabetes Mine, a consumer health blog focused on the diabetes community. The content is not medically reviewed and doesn"t adhere to Healthline"s editorial guidelines. For more information about Healthline"s partnership with Diabetes Mine, please click here.
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