The T1Dialogues – Ep. 12: Dr. Gretchen Good – How to live with diabetes for 50 years
Our guest this month, Dr. Gretchen Good, is a senior lecturer in Disability and Rehabilitation Studies at Massey University in New Zealand. Her teaching and research focus on diabetes, vision impairment and blindness, disability advocacy, and disasters and disability. Mum to two young children who both live with complex disabilities, Gretchen has lived with type one diabetes for 50 years and has experienced a few complications along the way but with the help of technology is managing a healthy, active life.
Watch the entire video down below:
Hi, Gretchen. Welcome to the dialogues.
Hi Pete, Thanks for having me on here. It’s an absolute pleasure.
I’m really excited to have you here with us today. I think you’ve got one of the most interesting, fascinating, long, detailed stories regarding diabetes care. So, why don’t you tell us a little bit about your background and your story?
Okay. Well, a significant part of my story is that I have been on insulin for 50 years, and recently I received a certificate from diabetes New Zealand congratulating me on living 50 years on insulin. I’m not quite sure how you celebrate a thing like that, but talking to you is a way for me to celebrate and acknowledge this milestone. Though I have seen a lot of changes and encountered a couple of complications along the way, it also had a lot of adventures and I am now living a pretty good life that I’m grateful for.
I will get back to your journey and experiences about your life 50 years ago in a second, but before that, I want to ask you that as you’ve got a certificate from Diabetes New Zealand. So how did they even know to send you out a certificate? Is there a registry of people?
They put out a call for people who have lived for a long time on insulin so they get notified when I was approaching 50 years, and my diabetes team wrote a letter acknowledging 50 years for me.
That’s fantastic and it’s actually really cool that there’s a process in place to acknowledge that and it’s really nice to connect with you as well. Tell us where were you 50 years ago when you got diagnosed? And how old were you? If you don’t mind sharing this with us.
I’m not a native New Zealander, I was born in Pennsylvania, US. Grew up in the Detroit area in the suburbs of Detroit. I was diagnosed with type one diabetes when I was eight or nine years old. It was a different time. Then I was hospitalized for 10 days and introduced to one injection a day and urine tests for sugar. Those were all the tools we had to work with at that time. I spent a lot of my childhood being thirsty, feeling unwell, and just winging it. I think we had very few tools to manage diabetes and also parents had so little information to work with. In contrast, it’s wonderful that we have so much information to work with today but it puts a lot of pressure on us to try to maintain really good blood sugar levels. When I was a kid, we were put on one injection a day, we needed to test our urine a couple of times a day and then hoped for the best.
What do you think it is that allows someone with 50 years of type one diabetes who started way back before the development of treatments that we have today? What do you think that allows some people to be healthier than others? Is it the management you’ve had? Is it luck? What do you think about it?
I think it’s luck. I know people who have worked a lot harder than me at maintaining better blood sugar levels, but still, they’ve experienced more complications. So I think some people are protected from complications and others or not, no matter how hard you work at it. We can never blame ourselves for complications that we might experience. You know, we’re landed with this lousy disease, and I think some of us are lucky, while some of us aren’t. I do work really hard and I get mediocre results. Having said that, I had a warrant of fitness at my biannual diabetic specialist session yesterday so with the help of medicine, I’m doing fine with blood pressure, blood sugar, cholesterol, thyroid, etc.
Which of the areas that you’re most focused on at the moment from a diabetes management perspective, health, and morbidity that you want to stay on above everything?
Personally, I’m trying really hard to get my HBA1C down to one point. I need to reduce it in order to keep my funding for my pumps and my supplies. So it’s an odd part of our New Zealand system where some of us have to reduce our HBA1C by a certain amount in order to maintain our insulin pump funding.
That’s fascinating. Do you know if that concept exists anywhere else?
I don’t think so. Well, I know in the States, if you’ve got private health insurance, nobody’s asking you to prove that you’re making the best use of the technology.
Actually, it’s an interesting concept, isn’t it? I mean because one of the arguments that I have for governments is investing in the new technology so I would advocate the government should enable CGMs for all type one diabetics, right? Because it would be a significant investment. There would be a lot of people who would require it, and they’re not that cheap and I think there’s some pretty good economics and some modeling around this to show that if you invest upfront in CGMs that will result in the long term benefits to the patients and will make it a good return on investment and I think maybe Sweden has something like 80% of its population on CGM’s. Because I guess they get that long-term perspective. I think that Newzealand not only pays for it but also wants to see improvement, which I think is not a bad thing.
However, it is a challenge because we are struggling to maintain perfect results for blood sugars and on the basis of that one test, they can take away the tool that helps you manage it the best you can.
I suppose if it’s out of your control to some extent, you might end up losing it and it’s going to get worse. Potentially, isn’t it? If they take it away, your management’s going to get worse, and actually, it probably will work against that concept that I just described so how do they justify that approach?
It’s a funding model which is to save money and yes it could be worse. If you are on the right side of the track, you get gold standard treatment and gold-standard technology funded through your insurance but if you’re on the wrong side of the track, it’s a disaster. So there’s a huge polarity in how diabetics can access technology and resources to manage their diabetes. And you know insulin is even hard for people to get in the US even if they have private health insurance that they’re paying a lot of money for.
Yeah, it’s kind of one of my great bugbears. I think my take would be that in the US there are probably more people on the wrong side of the track, so my understanding is that if you get a good cover, good healthcare, good insurance, good access, then you got to be treated well, but actually, it’s just a bit harder for most people to get that. The bar for that is a bit higher than in other countries.
it’s like you either have employment that comes along with good insurance or you don’t. I don’t remember being terribly traumatized or anything when I got diagnosed nor I recall it changing my life dramatically. We sort of pretended we were watching my diet and I got one injection a day for a long time, tested my urine, but life just sort of went on that was hardly disrupted. Teachers weren’t highly aware of what was going on and there was no accommodation for taking an exam where I might test my blood sugars halfway through. None of that was available, which I understand would be very useful and I believe that it’s necessary for people now who are using pumps where you only have short-acting insulin on board. And we need to be on top of what our blood sugars are from hour to hour.
Besides that, I do remember that what gave me the most motivation to work on controlling my diabetes (which only meant controlling my diet to the best of my ability) was going to summer camp for diabetic kids and I lived for that and it was a wonderful part of my summers to go hang out with other kids and camp counselors where we learned a little bit more about diabetes. So, it was a huge motivator for me to work harder. Hence. I’m a strong advocate of peer support groups and camps and for meeting with other people. Obviously, Now we have Facebook and online support to help us achieve that. I think that having access to a peer group is really important.
As in the past, I suppose when there wasn’t as much technology to do, you didn’t have the avenues that you have now to find people in similar situations. So the summer camps must have been really cool. In Australia and probably in New Zealand, we don’t really have Summer camp culture but I think we’ve all seen those movies so this was a kind of summer camp specifically for type one Diabetics?
Yes. In Michigan, my Detroit Michigan Diabetes Children’s Association ran a summer camp. I think I went for about seven summers. We went for two weeks at a time, but it was the highlight of my year. Those friends became really important friends, and that was the only peer support I ever had as a diabetic when I was a kid.
Yeah, that’s so cool. Tell us a little bit about your diabetes journey. I wanna definitely talk about your career stuff because I think that’s obviously important and relevant but I want to kind of just follow the path along your 50-year journey. When you were leaving high school, for example, where were you in terms of your diabetes management?
Management was not improving and at the age of 19, when I was in my first year of university, I had a sudden and dramatic loss of my vision. I was sitting around a campfire on a camping trip, smoke blew into my face and I had a coughing fit from the smoke and had retinal bleeds in both eyes. So what that meant was the diabetic retinopathy had taken hold, and we weren’t aware of it. So there were weak walled blood vessels in the back of my retina, and they both leaked dramatically. Within about two hours, I had a really dramatic loss of vision. Then I took a 10-week term off from the university in which I was a journalism student and went to a blind rehabilitation center in Michigan, learned how to use a white cane, Braille, and learned a little bit more about managing my diabetes as a blind person, and then returned to university and at my jobs as a blind person. I finished my undergraduate degree and went nine years as somebody who couldn’t access print for most of that time and used a white cane for much of the time.
So were you fully blind in that period?
Well, I was not able to read print as my vision fluctuated a lot, and used the white cane. I had a series of eye surgeries, a lot of laser treatment for retinopathy, a retinal reattachment, cataracts, and secondary cataracts. So I have gone through about 23 eye surgeries. But in the same year when I lost my vision, I got my first glucose meter so that was a dramatic change in my life. All of a sudden, I could manage my diabetes, could change the insulin, regulate my diet because before that, I was just doing urine testing alone and there was no way to manage blood sugars.
It must have been devastating being blind.
Well, I’m sure it was but my experience of it was quite different as I just kept plowing ahead. I returned to university, I hitchhiked, I had some big adventures and I kept my jobs, I was a summer camp counselor. I also kept my job at university, where I was an assistant to people with disabilities, kept up my studies with my books tape-recorded. So that’s how I finished my journalism degree as a blind student and I just kept going. I was 19 and I didn’t see the big picture. I wasn’t devastated about my future life as a blind person. Somehow I just kept going. And even though those were some really difficult times, I also had some of the most fun times of my life at university.
Wow!! that’s really incredible. I think it definitely speaks to your resilience and your perspective. What do you attribute that to?
Oh, probably was just that denial. It’s just a drawn sense of denial.
Yeah, I understand that. I think as diabetics, we all probably have a little bit of that. You know, we have this thing that we have to manage every day, and we just kind of get on with life. Indeed, you could call it denial but I think you can also probably see it as strength, acceptance that keeps you moving on. I think that there are many diabetics out and it’s really great to hear these stories and experiences. How did your blindness then get settled?
Well, I finished my undergraduate journalism degree as a blind student, and then I joined a voluntary service for two years. It’s sort of based on peacebuilding but it’s domestic within the United States and I spent two years working in prisons, food banks and had some wonderful experiences in that volunteer corps. Then I went on to get a master’s degree in blind rehabilitation so I had learned about the rehabilitation process personally and I learned about teaching people adaptive, daily living skills, etc.
I was still a blind student doing my master’s degree and then I got a job in a blind rehabilitation center working for the Vermont Association for the Blind and Vision Impaired as a peer counselor and a vision rehabilitation teacher. I had some final eye surgeries, which gave me a dramatic return of vision. I had cataracts removed and my retinas had improved over the years, probably due to the good blood sugar control that the glucose meters had given me so those glucose meters really changed my life. I was able to use those and manage my sugars better. I was able to read down the eye chart, got a driver’s license, and continued my work as a blind rehabilitation specialist.
How is your vision now?
My vision has been stable since then. Fortunately, I can read, drive and do almost anything I need to. I do have significant nighttime difficulties with my vision, but I’m just very fortunate. My vision has stayed stable all of these years.
It was sort of a gradual overtime experience?
I had sort of a gradual improvement. When the cataracts were removed, the day after cataract surgery, I could see and read down the eye chart that I hadn’t been able to do for nine years. I remember the feeling about getting back my vision was more stressful than losing my vision because I didn’t know whether I could rely on that vision any longer or not. I had learned how to do things non visually, and all of a sudden I had a vision that I wasn’t sure I could rely on and that became challenging. But over time, I learned to trust that vision and to use it again to drive safely. It was a trust experience. By that, I mean, you had this vision and you weren’t sure when it was going to go again.
Yes. Wow, That’s amazing. What was it like seeing your friends and family again? You must have had friends that you maybe had never seen.
I remember being very startled at seeing the dust particles in a Sunbeam that really threw me off because I hadn’t seen that as an adult. But I eventually have learned to trust that vision and rely on it and remained stable, and I’m incredibly grateful for that.
Do you remember any of the reactions from your friends and family?
That was a time in my life when I was moving around rapidly and within a year of the return of my vision, I immigrated to New Zealand. So, what has frightened the families when they’ve come to visit me in New Zealand, was when I drove them around on the left side of the road.
So how did you plan to move to New Zealand?
Moving to New Zealand was when I was seeking an adventure. I was working as a professional in the field of blindness and the Royal New Zealand Foundation of the Blind was advertising for people with professional certifications for 18 months job contracts and I took the opportunity. So, this was before the advent of the internet so I knew very little about New Zealand. I had seen pictures in the encyclopedia of what I thought were palm trees, and so I believed that I was coming to a warm country. When I came here, I didn’t intend to stay in fact, I came for an 18 month job contract, but I loved New Zealand. I landed in Wellington. I loved my work at the blind foundation and after that contract came to an end, I found an opportunity to work in another field of disability “vocational rehabilitation” for a job placement agency for people with disabilities called Work Bridge here in New Zealand. And that was a wonderful opportunity that gave me a permanent position and permanent residency here in New Zealand. A few years later, I got an opportunity to come work at Massey University, where I am a lecturer in rehabilitation studies so I’m able to pursue my passions, research and teach in disability and rehabilitation, and able to maintain my passions and to live in this amazing country, which is so beautiful. It has turned out to be a great opportunity for me.
Yeah, pretty fortuitous, I think New Zealand gets a lot of accolades for many reasons. They handled COVID 19 quite well. I suppose New Zealand is fortunate for having you there because it sounds like you’ve given a lot back to the communities and people in need in general.
Well, thanks, Pete. That means a lot. My passion is to improve the lives of people with disabilities and I hope that I get to do that in my current job by educating and informing the students who will become professionals, providing services, developing policies and educating everybody else. So I’m just promoting disability awareness, inclusion, and equity for all of us like for people living with long-term health conditions, people living with blindness, etc.
I am now a very proud mother of two children who live with complex disabilities, including Down syndrome. So I become a very strong advocate for children with disabilities as well.
I guess having children with disabilities is going to spur on that interest in advocating and improving the lives of people with disabilities. But was it the blindness, or which part of you that wanted to contribute in this way to the world around you? Where did that come from like the desire to support and give back?
Well, a lot of it is self-interest. I mean, I’m researching and teaching about disability. First of all, I view myself as someone living with diabetes and chronic health conditions and I perceive it as a disability that not everybody does. Some people classify that differently and that’s my primary personal disability. Vision impairment came on top of that, but that was a result of diabetes. I became a vision rehab teacher, I took a couple of years to explore if that was really going to suit my personality and my skills before I pursued it. I didn’t want to just do it because I was disabled and blind myself rather I did do some research and look into other careers, and I shadowed other vision rehab teachers to see if that’s what I wanted to do. I had thought about going into social work, but I enjoy rehabilitation so much, working side by side with people for practical problem solving and I love that part of rehab to just finding alternative ways of doing things and solving problems creatively. I get to pursue my passion in that area, and I’ve been able to do it for a long time now.
Are there any examples you can think of for someone who’s coming to receive assistance and the change that assistance has enabled?
Well, when I was a service provider, most of my clients were older women who had gradually and recently lost vision but I had the joy of working with them to try to get them back to the activities they loved doing. The definition of rehabilitation is returning to your previous life roles. So what I loved is helping these people to get back to what they loved doing. Getting involved in things like maybe going back to the senior center and playing cards with their friends after I had taught them how to use Braille, playing cards or large print playing cards or the right magnification and working with their environments, teaching their card-playing mates that they weren’t cheating, showing people what it might be like to have cataracts, glaucoma, retinitis pigmentosa, diabetic retinopathy, etc. So just changing environments, as well as teaching people the skills to get back to doing what they love doing. Some of the fun stuff I had done that helped a woman figure out how to gather her goose eggs without being attacked by her goose, and she had to carry her white cane in one hand and a bat in the other to keep the goose away, Another instant when I was helping a man to figure out how to safely shovel the snow off his roof and Vermont as a newly blind person, rigging up magnification devices to help somebody pan for gold and that’s some of the stuff that I got to do as a blind rehab teacher. This is what I teach my students to do at Massey too,
When you’re teaching students, what are the principles that you teach them that enable them in those situations to come up with solutions and support individuals better for example, as a layperson trying to support them?
Yeah, well, we’re just trying to teach client-centered goal setting which is a really important part of what I teach. It has to be the person’s idea of what their dreams and goals are, so don’t dismiss them, don’t have preconceived notions about what a disabled person can or can’t do because you don’t know what that individual has within them. Just never say No to your dreams.
That’s really interesting. I think that health care overall can probably learn from those basic principles. Because if we look at healthcare historically, It is kind of being a bit about what a doctor thinks and the best outcome for you. But I think that the system now is starting to flip around to a value-based system, a patient-centered system where patient-reported outcomes and what a patient wants as their outcome. I think that probably other specialties could learn some things from you in that area.
Yeah, I do wish we could teach every student about disability awareness, the importance of inclusion, and never saying no to creative problem solving and that disabled people can do anything.
So you’re lecturing at the moment?
Yep. I am lecturing in health sciences, rehabilitation studies, disability, public health
That’s really, really cool. Well, let’s go back maybe just talk a little bit about diabetes management like where you’re at the moment, I think where we left off your diabetes story, You had gained vision again. Do you want to kind of go back to there and just kind of take us through? How many years has it been from then to now? Like the experiences that you’ve had and how your management has improved?
Yep. Well, it’s been about 30-40 years since my vision improved and since I got my first glucose meter, but that was life-changing technology. And since then, I have seen improvements in the blood testers. Then came the insulin pump, which was a huge change in technology that allowed me better control than I’ve ever been able to get. It’s very difficult to control diabetes. I used to work full time at it and only got mediocre results but the pump was an amazing tool for me, and I funded that myself for 20 years. Then, of course, more recently, I’ve been using the freestyle libre, the continuous glucose monitor. That has again allowed me to improve things, HBA1C, and to feel better to be able to exercise without the low sugars. I’m grateful for the technology, and every time there’s a change in technology, I gotta have a wonderful honeymoon period where I have really good control, and then things back up just a little bit but the pump and the Freestyle Libre have really enhanced my life remarkably.
I was reflecting on this just yesterday about this concept called “Beginner’s mindset”. It’s kind of a yoga principle as well, like in yoga, you never really become an expert. You always feel like you’re still on day one in many senses. I think diabetes sometimes is a bit like too and there’s no perfection. I’m never going to achieve perfection because you’re never ever gonna be an expert and you never really feel like you’re ever going to solve the problem. You just continue to learn every single day. For example, I have to kind of almost reassess and come up with a new plan and this constant tweaking could become frustrating for many people with diabetes as well as the thought that you might never win. So one of the things that diabetes has taught me is to not be too hard on myself and failure is okay.
I’ve spent a lot of years feeling guilty, and I gave a talk at a local diabetes group called “Bad Diabetic” (title of the talk was “Bad Diabetic”) because I often do feel if my numbers are not good and there are complications that arise, that it’s my fault. I think we’re all just doing the best we can at any given point. I get frustrated when other people police other diabetics to get perfect results. I think we’re all doing the best we can with what we have. We might need more support, more education, and better technology.
That’s a pretty good point. I would like to wrap up this discussion and would like to ask you that what’s the latest or recent improvement that you’ve made? So, for example, for me, it’s being that overnight stuff where I’ve had to actually adjust my diet. Therefore, my attitude has always been like “I could eat what I want and I could manage it with insulin.” But, at the moment it feels like that’s not the case, I need to let go of the attitude and start to be a little bit more cognizant of how many carbs, etc. that I’m eating particularly before bedtime for my evening meal. Also, I had that attitude, “Well, I could eat what I want because I’m managing it well” but I’m wrong. I have to adjust my diet a little bit which is really hard for me to do because I used to think that I’m good at this so I can eat what I want. This has been one of my realizations lately is I have to actually adjust my diet a little bit.
Yeah, I’m also working really hard on that HBA1C but when I get that better, I feel better. I have been working on low carbs and I’ve got my breakfast and figured out where I can eat low carbs to keep my blood sugars decent throughout the morning. There are a lot of factors that you need to consider in your management. Similarly, I’m trying to introduce low Carb to my lunch to get the rest of the afternoon sorted out. So those are the battles that you have to run all the time and it’s a hit or a miss situation. One day it’ll work, and the next it doesn’t, so it’s about having the patients look back and understand your patterns. In addition, those Facebook groups are my lifeline at the moment because people discuss this with me and It’s really a helpful circle.
Well, It would not be erroneous to say that after 50 years of diabetes journey, the game doesn’t change, it’s not like you know anymore or you do any better. It’s still the same process, and it’s still doing minor tweaks. So I think it’s a really great way to finish off today. And Gretchen, thank you so much for the work that you do and the contribution that you make to the world around you. I think you’re a really great example and your story is fascinating. Again, I am really grateful to have you on the podcast today.
Thank you, Pete. And thanks a lot for what you do for informing everybody and working on insulin availability for everyone. That’s so important. So thank you for your work in that area.
It’s a pleasure to chat with you and have a nice day. We’ll surely connect soon. Thanks again!!!
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