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A difficult but important interview with Nicole Smith Holdt. Her son, Alec, died in 2017 just after he came off his parents' health insurance and realized he couldn't afford his supplies. He began rationing insulin and died less than a month later.
Stacey talks to Nicole about how this could have happened and what her message is to the diabetes community and to lawmakers. Nicole will be at the #Insulin4All rally and protect Sept 30 at Eli Lilly headquarters.
More information:
Insulin4All Protest information
NPR: High Price of Insulin Leads to Lethal Rationing
Snopes: Did Alec Smith Die Because He Couldn't Afford Insulin
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It's been 20 years since Nicole Johnson took the crown, becoming Miss America. That was just five years after she was diagnosed with type 1. At diagnosis, her doctors told her she was too sick to continue college, to pursue her dreams of being a journalist and to have a baby. Nicole shares how she overcame that prediction to go on to finish school, compete and win pageants and to have a child a few years later. We’ll also talk about some controversy among the Miss American organization today.
Other Miss America contestants with type 1 include Sierra Sandison and Caroline Carter (click to listen to our previous interviews with them)
Plus, one small step toward a DIY Omnipod Loop. Learn more about OpenOmni.
Stacey also shares a recent issue with Benny's insulin pump and what they did for a backup plan.
This podcast is not intended as medical advice. Please contact your health care provider with any questions.
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1:50 Stacey Welcome
2:45 Stacey talks about the official launch of Jesse Was Here for those who've lost a loved one to diabetes
4:15 Listen to Nicole win the crown in 1998
6:00 Interview with Nicole Johnson
53:15 Stacey talks about OpenOmni (you can also learn more about NightScout here and OpenAPS here)
56:10 Stacey shares their issue when Benny's insulin pump wouldn't charge
Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners!
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Can you pilot a plane when you have diabetes? Our guests this week say absolutely yes! Two private pilots, Douglas Cairns and Thor Dahl, share their stories and explain why they went after a world record recently. They visited the most US states in 24 hours, to show that a T1D diagnosis shouldn’t ground you.
We talk about the current regulations surrounding flying in the United States and other countries and why Douglas and Thor continue to push the limits toward change. Check out Douglas's websites Flying with Diabetes and Pilots with Diabetes.
Plus, a little bit of an editorial this week. Stacey talks about how she posted in her local group about the really widespread use of the word “dread.” She's not a fan - why she wants us to think before we use it again.
Stacey is the MC for the debut of Bike Beyond - The Documentary in Charlotte this Sunday 8/19. We followed them coast to coast last summer. You can hear more about the ride here and more about the plan for the documentary in this episode. Watch the trailer here.
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1:50 Stacey Welcome
5:15 Stacey talks to Douglas and Thor about flying with T1D
38:30 Why "The Dreaded" is driving Stacey bananas - a little bit on language and fear
43:30 Update on Benny's return from sleep-away camp
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It's been more than 30 years since the play & then the hugely popular movie Steel Magnolias came out. It still continues to be a focal point for women, pregnancy and diabetes. When Stacey's local theater announced their production, she decided to put together this round-table of moms who have type 1.
You'll hear from: Kerri Sparling, author of Six Until Me & “Balancing Diabetes.” Melissa Lee, Director of Community Relations for Bigfoot Biomedical & Kyrra Richardson, founder & Creative Director of Myabetic
Kerri, Melissa & Kyrra talk about their feelings around Steel Magnolias, their experiences with diabetes during pregnancy and now as they raise their children.
Resources:
JDRF Pregnancy Toolkit
http://www.jdrf.org/wp-content/uploads/2013/02/Outreach_pregnancy_12-14-12.pdf
Diabetes Sisters:
https://diabetessisters.org/blog/qa-ginger-vieira-pregnancy-and-diabetes
https://
https://
Beyond Type 1: Pregnancy Resources
https://beyondtype1.org/pregnancy/
Plus a big award for a diabetes group that made a big difference last year during those devastating hurricanes. Read the article from DiabetesMine
And Stacey clarifies her the circumstances around her receipt of the G6 system earlier this spring.
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1:30 Stacey welcome - taping from the Friends for Life Conference, so apologies about the rough voice this week!
4:30 Dexcom G6 clarification - Stacey received the system and one month supply free earlier this spring. She explains why she initially thoguht (and told listeners) that she was paying for it. She is now paying for all G6 supplies.
7:15 Steel Magnolias Roundtable with Kerri, Melissa & Kyrra
59:20 A big honor for Insulin For Life USA after their work during last year's hurricanes.
1:02:45 Benny's at camp doing cannonballs (please let that Dexcom stay on!)
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You’re hearing a lot right now about Children with Diabetes Friends for Life. The largest family diabetes conference in the world starts this week. But how did it begin? What's it about? You’ll hear from the founder of the whole event.
(This episode contains excerpts from our interview with Laura in 2015. You can listen to that whole episode here)
Plus, questions from the Facebook Group for Stacey. Some diabetes, some personal.
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1:00 Stacey Welcome
4:30 Excerpts from interview with Laura Billetdeaux
19:45 Facebook Group: Ask Me Anything
40:00 Stacey talks about her latest Audible download
Information about Audible - Get your 30 day free trial and free book here
41:50 Next week: Moms who have type 1 talk about Steel Magnolias
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People with diabetes often live with other conditions as well. Find out about a new campaign called Now You See Me, an effort by the folks at Riding on Insulin to educate about living with multiple diagnoses.
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Stacey talks to professional snowboarder and founder of ROI Sean Busby who lives with T1D and Lupus. It took Sean a long time to let an accurate type 1 diagnosis and even longer to determine he has lupus. He shares the story of that journey, explains how he got back to competitive snowboarding and why he started Riding on Insulin.
We find out more about ROI from Mollie Busby. When she and Sean aren't skiing and snowboarding and teaching kids how to love the outdoors, they live in a Yurt in Montana!
Visit Beyond Type 1 for more information on the #NowYouSeeMeCampaign
Find out more about the Charlotte ROI/JDRF event we talk about
In our Know Better segment.. A new study about adults, type 1 and other autoimmune conditions.
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1:45 Stacey Welcome
4:30 Interview with Sean Busby
43:00 Know Better: study about type 1 diabetes and other autoimmune conditions
47:00 Community Connection with Mollie Busby
1:02:00 Stacey shares her Riding on Insulin story
Where will Stacey be?
May: Lilly Blogger Summit
May: JDRF One Challenge with Riding on Insulin
July: Children with Diabetes Friends for Life
October: Children with Diabetes Falls Church
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Stephan Shaul was diagnosed with type 1 as an adult and says finding the diabetes online community changed his life. Stephan writes the blog Happy Medium and hosts the podcast, Diabetes By The Numbers. He recently joined Maryland’s Advisory Council on Health and Wellness and is part of 2018 Reader Panel at Diabetes Forecast magazine.
Stacey also speaks to NBA All Star Dominique Wilkins. Diagnosed with type 2 just after he retired, Wilkins is now working with Dario to educate people about diabetes.
More about Dario in this episode from 2016
In our Know Better segment, new guidelines for adjusting insulin dosing based on the Dexcom CGM.
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2:00 Stacey Welcome - Brec Bassinger wins Fear Factor
5:00 Interview with Stephen Shaul
35:30 Interview with Dominique Wilkins
49:30 Know Better - new guidelines on dosing from Dexcom
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JDRF's President and CEO Derek Rapp joins Stacey for a wide-ranging interview. We talk about everything from stem cells to insulin prices to what JDRF is doing for adults with type 1. Rapp has headed up JDRF since 2014 and has a son with type 1. He shares his story and answers your questions.
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Note: This interview was taped before the Special Diabetes Program had been extended. SDP is the program that gives $300 million for diabetes research to the National Institutes for Health. Stacey & Derek talk about SDP and we left those questions in to give you a better idea of what the program is all about.
In our Know Better segment, Stacey gets personal about a health procedure she had recently and talks about self care. She references this article about stress and parents of children with chronic illness. And she explains how a colonoscopy can be a perfect way to spend Valentine’s Day. Really.
Plus, #DPodcastWeek wraps up with a promo for Diabetes Daily Grind's Real Life Diabetes podcast.
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2:00 Stacey talks about her past involvement with JDRF and shares a story about Dr. Mark Parker (read here), the retiring head of her local endocrinology practice.
4:15 Interview with JDRF's Derek Rapp
47:15 Feedback from last week's episode. Should people with T1D be wary of marrying someone else with it? We got a comment about increasing the genetic risk for children with T1D and that sparked a great discussion in our Facebook Group.
50:00 Stacey talks about her recent health screening and stress among T1D parents
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Lawmakers are starting to take a closer look at the price of insulin. Nevada became the first to pass a law last summer regarding transparency and Colorado may soon do the same. Stacey talks to Colorado State Representative Dylan Roberts about the bill he’s put forward and how it could change things. He also shares his very personal connection to type 1.
In our Community Connection this week, adventurer and solo sailor Erin Spineto takes on a new challenge. She's making a comedy web series about T1D? We’ll explain what A Bad Case is all about.
And Know Better this week about efforts to make the the Omnipod system part of the open source artificial pancreas project.
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3:40 Catching up on previous guests: Stacey talks about the Diabulimia conference happening this November and announces that fitness coach Christel Oerum has become an American Citizen!
6:00 Interview with Rep. Dylan Roberts
26:00 Interview with Erin Spineto
36:30 Stacey talks about OpenOmni efforts
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He's lived with type 1 for more than 56 years and was one of the first people ever to use an insulin pump and later a CGM. In fact, Yerachmiel Altman was one of the first people to make the switch from two shots a day to what we now call multiple daily injections (MDI) almost 40 years ago. Altman is an engineer and computer scientist who worked for d-tech companies. Now, he wants to help educate kids and adults about living with type 1 through books and games.
We talk about "The Moose and the Pump," "I Can Help Take Care of Me," and Altman's concept for a board game, Insulinopoly. He also shares the changes he's seen in technology over the years and his hope for the future.
Also this week, Noah’s March is at an end. We first met this family when they set off from florida to Washington, crossing the country for diabetes awareness and to raise money for research.
Plus, if you're thinking about those New Year’s resolutions, find out how Diabetes Strong can help you start 2018 off in a great way.
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2:30 Stacey explains the podcast is now available on Spotify and goes through other ways to listen.
5:00 Stacey talks about Diabetes Strong and how to sign up for the January challenge
6:30 Stacey announces the Dexcom #WarriorUp charity campaign raises $100,000 for diabetes charities
8:05 Interview with Yerachmiel Altman
33:15 Interview with Noah's March
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