About Us
Identify health issues unique to people aging with Type 1 Diabetes (T1D).
Promote solutions to sustain safe and comfortable environment for people aging with T1D.
Raise awareness of health issues encountered by people with T1D to healthcare providers.
Interface with the diabetes research community and as well as the medical professionals to explain and validate our issues and solutions, as well as support our efforts to educate the T1D aging community.
Why we started this group:
I’ve lived with T1D since 1965, diagnosed at age 11. It was in the “dark ages” for diabetes management, without all the remarkable technology available to us today, to “control” and “tailor” our insulin needs to our diabetes demands.
About 10 years ago, I was faced with health challenges that required several surgeries … and I started to experience the perils of being hospitalized as a person with diabetes. It was not a good realization. Hospitals took away my control and put me at great risk … and I was scared. I worried that I would be helpless and at the mercy of the healthcare system. I worried about what was going to happen as I got older, less capable of managing my technology, and lost my support network.
These are fairly normal concerns for us as we age,. EXCEPT, we have the added burden of managing Type 1 diabetes, including keeping up with technology, coping with insurance and pharmacy orders, where would weI be able to live, plus all the what ifs (what if I lose my vision? what if I fall? what if I can’t take care of myself) … SO MANY WHAT IFS!
A group of my local T1D friends gathered in my dining room to discuss just these concerns, worries, fears. What could we do, as a group of passionate, caring T1Ds, to identity the needs of us aging T1Ds. Most of us had been told upon diagnosis that we would probably not live past age 40.
And yet, here we are, still living, still thriving and enjoying life, well into our 60’s and more.
What would we need, going forward, to feel safe, to feel prepared, to feel relaxed and calm and empowered.
WHAT WE ARE DOING NOW?
We’ve spent a great amount of time, simply defining our concerns and fears. And then we looked at solutions and tools to help us live our best lives into old age, with confidence.
Our team includes T1Ds, researchers, healthcare professionals. We are driven to find the best answers to aging gracefully with diabetes … look to the research community to validate our solutions … and then share them with other T1Ds, our medical teams, our diabetes educators, and our loved ones.
I use Omnipod Dash with iAPS/Trio plus alternating between Dexcom G6 and G7 … plus Anubis G6 transmitter.
I’ve been married to Richard for 23 years, love my westie named Hey Buddy (who is enjoying his senior years).
I’m VERY concerned about all the issues of aging with T1D … and helping our community plan and be prepared. Absolutely love the enthusiasm in this group!!! :sparkling_heart:
Iris Adam: Born & raised in Wyoming, I am one of six siblings, four of whom have lived with type 1 diabetes (T1D). We use varies therapies: Dexcom CGM plus syringe, Tandem pump or Omnipod DASH/DIY Loop.
For many years, I worked at the University of California, Irvine, in the Henry Samueli School of Engineering, where I was the Director of Accreditation for engineering programs. In retirement, I’ve added genealogy, Bridge, travel, a little golf and a lot of hiking.
My husband & I have raised two amazing daughters, and now have five adorable grandchildren!
Marion Barker: I was diagnosed with T1D in graduate school at age 23 in 1979. Over the next 36 years, I transitioned from NPH & regular to MDI, from urine test strips to fingerstick meters. During that time, I got married, managed 3 pregnancies and helped raise 3 children. We now have 3 grandchildren. So far, I am the only one in the immediate family with T1D.
I started using Loop in 2018 and continue using it today.
I retired in Feb 2021 from a career in the aerospace industry. My final jobs there involved Flight Software for space instruments, along with testing and data analysis tasks. Now that I’m retired, I can devote more time to volunteer work on Open-Source Automated Insulin Delivery systems like Loop, editing LoopDocs and supporting the Loop and Learn team.
Sabrina Reed (with Mac & Cheese): I’ve had T1D for 38 years and seen the many awesome changes in technology to help us manage this disease. After several years of having “site issues” with insulin pumps, trouble-shooting the issue with every possible solution (different site cleansing techniques, different infusion sets, different insulins, allergy testing and seeing many doctors of different specialties) with no ease of pain or discomfort, my doctors and I have concluded that I am allergic to all liquid insulins. For now, I have temporary relief from severe reactions by mixing insulin with a steroid and taking via shot instead of pumping. Unfortunately, we don’t know how long this might help and what further issues are down the road for me and my future with diabetes. This makes me especially interested in sharing information on skin and site issues within the T1Dto100 group and all the other concerns the group addresses because growing older with diabetes is very complicated.
Jack Griswold: Hallo, I am Smiling Jack Griswold and I am approaching 69 years with T1D. I am NOT Looping because of two main requirements: I insist on using Apidra insulin (I tried all the others) and I insist on using stainless steel (SST) cannulas (I get 4 days from them). Unfortunately, the majority of available pumps don’t meet that criteria. Sure, I could use a 10+ year old Medtronic pump….no thanks. Ha!
I took over a former CarbDM T1D group when Covid19 began and have monthly in-person and Zoom rendezvous. I write a monthly “Smiling Jack’s T1D newsletter” which has a plethora of links to all things with diabetes.
I still mountain bike and get a lot of exercise daily.
Life Is Still GOOD, even with T1D. All the best, Smiling Jack
Maddy Arnstein: I live in NYC with my two cats and have lived with T1d for 62 of my 64 years of life. I work part time as a special educator for the NYC DOE and privately. My interests for this group include: how to access social-emotional support as we age for ourselves and our loved ones, insurance coverage for home health aides and at-home nursing care, and facilitating communication among all our health care providers to create wraparound treatment plans.
Glenn Weber
Jim is 66 years old and has been T1D for 54 years. I live in the Canadian Rocky Mountains near Banff Alberta and have a love for outdoor activities. I am always grateful to be able to ski and hike and cycle despite decades of diabetes. Having good control is tougher as I age, and I am glad to be part of the T1D to 100 discussion!
Barb Giammona: I’m Barbara Giammona, T1D for 22 years, diagnosed at age 42. I Loop with Omnipod and Dexcom G6. I am so grateful to have been connected with @Joanne Milo through her Diabetes GNO group many years ago, which lead to me progressing through all the latest technologies until I landed on Loop. Lifechanging!
I am retired now, after nearly 40 years in the Technical Communication field. My husband Chris and I have been married almost 38 years. We split our time between two homes in Southern California (Palm Desert and Irvine) and a summer place in Ocean Grove, NJ. We spend a lot of time looking after my aging parents. We each pursue many hobbies individually, but hope to soon find a joint mission for the retired chapter of our lives.
I am very excited to be part of the T1D to 100 initiative, as this is an area where I feel we can make an important difference in many lives. And perhaps I will someday write the Great American Novel!
Theresa Hastings: Hi! I’m Theresa Hastings, T1D for 25 years and got active in the DIY online community around 2018, but really picked up in the last few years while managing social media for a few diabetes organizations, like DiabetesMine and Journey Biosciences. Now, I manage social media for Integrated Diabetes Services by day, while having the pleasure of navigating the creation of a new DIY app, Trio, alongside some brilliant and selfless developers and volunteers by night.
I have a bachelors of science in psychology, which allows me to do anything and also nothing.
I’ve been married to my amazing husband, Matt, for 18 years. He is a geologist who travels the world and sometimes takes me along. We have 2 kids, Jackson (14) and Abby (11) who are turning into the most empathetic and kind people. More than this momma could ever have hoped for.
We currently live in South Carolina, but have lived in a few other places, like Georgia, Colorado, and Nevada. Who knows where we will end up next!
Jack Kouloheris: Hi , I’m Jack Kouloheris, T1D for 13 years (diagnosed late in life at 50!) I’ve been involved in the T1D online community since diagnosis, initially learning and now trying to give back.
I started using Loop about 5 years ago , with Dash & Dexcom G6.
I have a PhD in Electrical Engineering and have been working for IBM for the last 42 years.
I have been married to my husband, Ken, for 34 years. He’s also an electrical engineer and Professor of Electrical Engineering. In our spare time we enjoy travel and seeing shows on Broadway. We live in the Hudson Valley, about 30 miles north of NYC
Ellen Broadman: Diagnosed with T1D at age 66 – eight years ago. Use Dexcom G7 and Omnipod Dash with Loop 3.4.1
I retired from a 39-year career as an attorney and enjoy art, music, listening to books, and spending time with family and friends.
Stephen Woodward: T1D diagnosed 8/1970, happy 17th birthday
I have worked as volunteer in the SF bay area representing JDRF and ADA at diabetes events. Help run Silicon Valley as a board member. Currently living in Tuolumne, CA
Active in multiple T1D group meetupss hosted by Breakthrough T1D, DYF, Smiling Jacks, and more. Act as Group expert in the Juicebox Podcast:Type 1 Diabetes Facebook group with +50k members. Interview on podcast in epesode #828
Retired after a career in Instructional Design and the retail world.
Gail Devore: My biggest worry, right now, is Medicare (I’m one year away from eligibility) and how to make sure everything is covered without having to jump through the ridiculous hoops I do now – and whether or not needed supplies are covered. I’ve tried helping other people get Pods, but they are apparently only available through DME which makes them too expensive to use. I am already stressing over it, so am hopeful we can as a group provide some tips and tricks for navigating Medicare’s limitations and benefits.
Laurie Harper: My life changed on 9/5/1955, during a Labor Day picnic in the beautiful Adirondack Mountains in Northern NY. As a 2 year old I was lethargic, drinking a lot of water and filling my diaper. Fortunately living in a small town, our doctor saw me right away and tested my blood sugar, which was over 850. Dr Bellair, told my parents he didn’t know what to do for me and recommended I be taken to Boston to what is now The Joslin Clinic part of Beth Israel Hospital. That was a life saving decision for me.
Until age 18, I visited Joslin regularly and even have a letter from Dr Joslin which states I may live longer than originally expected. That was written in 1964. Fortunately for me, I’ve successfully navigated many challenges including the birth of 3 children and cancer, 10 years ago. In 2005, I was asked to be part of the original Joslin 50 Year Medalist Study and have returned a few times for further research studies.
Now that I’m retired, I travel quite a bit and am active in a few social media spots. Recently I was invited to be an Administrator in the Joslin 50 Year Medalist FB group and am active in another FB group, Type 1 Diabetics for 50+ Years Group, which also has a Utube channel. My interview was number 7. :stuck_out_tongue_winking_eye: . Previous to that interview I did one with Stacy Simms of Diabetes Connections.
My husband and I enjoy hanging out with our 8 grandchildren and he has been my rock since 1972. He now has T2Diabetes as did and do several of his family members. I hope to improve and increase resources for people who require insulin, both T1 & T2Diabetics. My feeling is the larger numbers would get more attention from our representatives. Appreciate being part of this group and hope I can be of value to its mission.
Meredith Gansrow: President of The Sage Creators, LMT, Reiki Master, Artist
Martin Scivier: I have 70 years lived experience of living with diabetes. Having being diagnosed with Type 1 in 1954 aged 5.
Living in London I am privileged to have my diabetes needs covered by the NHS at no cost to me the user.
Currently using a DIY closed loop system for the administration of insulin which my pancreas declines to do.
I am interested in the total care of the older person with diabetes Especially in UK care homes. An area where safe quality care of those with diabetes is often lacking.
In 2022 I became a #dedoc° voice as a #dedoc° voice virtually attending #ATTD2022 & #EASD2022 conferences. I was privileged as an #dedoc° alumni, to attend in person the #ATTD2023 conference in Berlin, #ATTD2024 in Florence & Diabetes UK Professional Care conference in London.
Ally Hughes
Anna Kahkoska
Nancy Allen