Juicebox Podcast: Type 1 Diabetes
Episode #1683: T1D to 100
Date: November 17, 2025
Host: Scott Benner
Guest: Joanne Milo, founder of T1D to 100 (t1d2100.com), living with type 1 diabetes since 1965
Overview & Main Theme
This episode features a thoughtful conversation between host Scott Benner and Joanne Milo, a 71-year-old type 1 diabetic and founder of a new resource website for aging adults with T1D—T1D to 100. Their discussion centers on the unique challenges faced by the aging T1D community, the lack of existing support systems and planning, and practical, obtainable strategies for preparing for life’s later stages with diabetes. Throughout, they emphasize the importance of preparedness, community, resilience, and advocacy.
Key Discussion Points & Insights
1. Aging with Type 1 Diabetes: “Nobody Saw Us Coming”
- Joanne shares her diagnosis story from 1965, when she was told she wouldn’t live past 40.
- The landscape of type 1 diabetes has changed—many now live long, full lives, but the healthcare system wasn’t prepared for their longevity.
- There is a lack of research, planning, and resources for seniors with T1D.
“Nobody saw us coming, nobody planned for us. Nobody knows what we need.” — Joanne (02:34)
2. Building a Supportive, Informational Community
- Joanne’s initiative for T1D2100 began with a group discussion at her dining table to share fears, concerns, and specific challenges of older adults.
- The process involved identifying “buckets” of issues and solutions, creating resources like checklists and cheat sheets.
- Emphasis on actionable advice—being prepared, not just identifying problems.
3. The Critical Role of Preparedness
- Joanne advises making “go bags,” compiling medical information, identifying advocates, and preparing for surgeries and unpredictable emergencies.
- Real-life stories of sudden change (e.g., a friend losing her husband overnight) underscore the importance of advance planning.
- Checklists and customizable resources are available on her website.
“So this weekend I went to Walmart, bought a backpack and made my go pack—and it just made my heart sing.” — Joanne (09:56)
4. Unique Challenges: Living Arrangements and Institutional Care
- Barriers to access in retirement communities and long-term care—extra charges for T1D, lack of trained staff, frightening protocols.
- Risk of mismanagement in nursing homes and hospitals, such as calling 911 for nighttime lows instead of treating them.
- Advocating for system change, understanding legalities, and identifying T1D-friendly facilities.
5. Shifting Priorities: From Tight Control to Safety
- As T1Ds age, priorities shift from aggressive A1c targets to minimizing severe lows and fall risk.
- Hypoglycemia becomes more dangerous and harder to recover from with age.
- Emotional challenge of “letting go” of strict control after decades of being taught to pursue it.
“We were taught the word control... And now that we have the technology, we can get tighter and tighter control. At one point my endo said, ‘Joanne, what’s your point?’ And it’s like, ‘Well, because I can and I’m supposed to.’” — Joanne (19:44)
6. Risks of Cognitive & Physical Decline
- Elevated blood sugars, risk of brain fog, and increased incidence of mental decline among older T1Ds.
- Physical issues: diminishing dexterity, vision, skin changes affecting device use.
- Example: Difficulty opening CGM sensor containers and needing aids like rubber bands (51:12).
7. The Essential Power of Connection & Community
- Maintaining social connection is a key trait among “super agers.”
- Online support groups, local gatherings, toolkits for creating and moderating support communities.
“The biggest thing is, you keep moving and you connect... it’s what gives you a sense of safety and a network.” — Joanne (23:18)
8. Barriers to Advocacy & Provider Understanding
- Doctors and care providers struggle to manage T1D in aging adults due to lack of time, training, and validated resources.
- Joanne underscores collaborating with researchers—bridging lived experience and empirical evidence to impact care standards.
“They do not have a clue what to do with us... and we’re not that great, as we get older, to represent ourselves. And the healthcare provider has 15 minutes to help us.” — Joanne (27:00)
9. Systemic Issues: End-of-Life Care and Protocols
- Shocking realization: some protocols advocate withholding insulin at end of life, leading to inhumane and painful deaths via ketoacidosis.
- The need for explicit directives and informed planning to ensure humane treatment in late-stage and palliative care.
“There is a thinking that you withhold insulin. That is about the worst death. It puts people into ketoacidosis... So we have a document saying, specify that you do not want insulin withheld.” — Joanne (32:09)
10. Practical Tips for All Ages
- Encourage preparedness no matter what stage—go bags, mini go bags for short outings, checklists for travel, skin care for device wear.
- Joanne’s website is organized into six clear categories: preparedness, living arrangements, coping, body changes, advocacy, and research.
Notable Quotes & Memorable Moments
- On the lack of preparedness:
“Maybe we don’t have a plan today for people like you because they weren’t planning for people like you.” — Scott (03:28) - On shifting care priorities:
“When you’re 75 and 85, you’re solving for—I don’t want to die today, right... my bigger problem is not falling over today and gone.” — Scott (19:08) - On resilience:
“My husband and I liken aging to being in heavy surf with a lot of lumber in it. And you get your footing and you’re standing, and then the wave comes, and then there’s a piece of lumber that knocks you over and you have to get back up, and you have to get back up mentally and emotionally to feel—you can take it on again.” — Joanne (20:48) - On community support:
“I think it could possibly be half of all this... connection and not feeling alone, that sort of feeling.” — Scott (24:03) - On the device industry:
“If you’re over 60, you may have trouble opening... CGM containers. I have trouble, and people call me and I say, do you have a rubber band?” — Joanne (51:12) - On dissemination of knowledge:
“Sometimes people say my podcast is for white ladies in their 30s and 40s who have time to worry about these things... But it is always in the back of my head that I’m not reaching everybody that needs it.” — Scott (37:22) - On actionable preparedness:
“Small amounts of effort save huge amounts of time and huge, huge problems later. Just do this little thing right now and you won’t be fighting with a 250 blood sugar for the next four hours.” — Scott (45:32)
Timestamps for Key Segments
| Timestamp | Segment | Summary | |-----------|------------------------------------|-----------------------------------------------------------------| | 02:12 | Joanne’s diagnosis & longevity | Her early prognosis & why there’s a lack of support | | 04:51 | Creating T1D2100 | How the website and resources started | | 07:10 | Preparedness | Why seniors need to plan for emergencies | | 10:32 | Knowledge as empowerment | Information as the first step towards safety | | 16:43 | Provider gaps & shifting priorities| Difficulty in accessing knowledgeable care as a senior | | 17:46 | Cognitive decline & looser targets | The risks and changing recommendations for tight control | | 23:18 | Social connection is key | The value of support groups and connection | | 32:09 | End-of-life care risk | The need to specify insulin use at end of life | | 36:34 | Travel tips & positivity | Planning for travel and focusing not just on worries | | 46:13 | Accessibility of the website | T1D2100’s design with older users in mind | | 47:08 | Advocating research & upcoming events | Involving research community and upcoming webinars |
Resources MENTIONED
- Website: T1D to 100 (t1d2100.com)
- Six main sections: Preparedness, Living Arrangements, Coping, Body Changes, Advocacy, and Research
- Community-driven checklists, cheat sheets, and support group resources
- Community: Facebook and Instagram (search “T1D2100”), and LinkedIn group
- Upcoming Event: Webinar with leading T1D/gerontology researcher (Dr. at Harvard Joslin)—see site for details
Call to Action
- For Listeners:
- Explore T1D2100.com for resources no matter your age
- Advocate for yourself and start discussions with your care team about future needs
- Join the online and social communities for support and information
Tone and Style
The conversation is candid, compassionate, and practical, rich with both empathy and determination. Scott brings humor and warmth, often reflecting on broader life parallels, while Joanne offers wisdom, realism, and a proactive approach rooted in lived experience.
Closing Note
This episode is an invaluable resource for anyone with type 1 diabetes (and their loved ones)—especially those thinking ahead to living well, preparing for the unexpected, and aging with resilience. Joanne Milo’s insights and resource-building are helping to pave the way for a better supported future for older adults with T1D.