As we wind down the series of interviews with our 2018 DiabetesMine Patient Voices Contest winners, we're thrilled to feature longtime type 1 Terry O'Rourke in Portland, OR, and his beloved 10-year-old diabetes alert dog Norm!
Terry's life is quite the tale -- from his early days of chimney cleaning, to a career as an aviation electrical technician, to living on a sailboat in San Francisco and being an avid skier and bicycle enthusiast at different times of his life. On the diabetes front, he was an early insulin pumper in the 1980s, all the way up to building his own DIY closed loop system now, in his golden years of retirement.
So, Friends: Pull up a chair and grab some coffee or tea to enjoy this fascinating read...
Talking with Terry O'Rourke
DM) Hi Terry, let's start where we always do, by asking how diabetes came into your life?
TO) As of April 2018, I've lived with T1D for more than 300,000 hours. I was diagnosed in 1984 at age 30, so it’s been 34 years now. I was living in Boise, ID, at the time and was an avid downhill skier, and also had a small business that I’d sold to go back to school for electronics so I could be an electronics technician. So I was in my late 20s entering my 30s, going back to school and had all this ambition. I was a pretty good student and would sit in the back of class, understanding the concepts and getting As on all my exams.
And then, Christmas came along, and with out-of-town guests there was a lot of skiing, eating and drinking. After the holidays I went back to the second quarter of electronics studies, and we were starting new areas that weren’t as familiar. I was still sitting at the back of class, but now I couldn’t see the whiteboard in the front. It wasn’t too far up there, so I moved up and found that not only could I not still see the board, but now I wasn’t understanding the concepts. I was baffled, it was like they were teaching in a different language. Of course, looking back, I know that my brain was just overwhelmed with hypoglycemia at the time. I also biked to and from school, and one day I remember that afterward I was just so tired, so lethargic and came inside and just laid down on the floor.
Did you rush to the hospital then?
With my eyesight and feeling the way I did, I went into the doctor and of course they diagnosed me with diabetes. I don’t remember what the number was, but just recall it was very high and that I didn’t have any appreciation for how high it was at the time. I was on the edge of DKA even though I never fully went to it. They told me to go to the hospital on that same day, a Wednesday, and because I was such a dedicated student, I asked if it could wait until Friday until I was done with class for the weekend. There was a risk, but looking back I think it was a slow-adult onset (LADA), so I think that’s what protected me even then from fully collapsing into DKA.
With all the stories of adult misdiagnosis over the years, did they start you on insulin right away?
At the hospital, they kept me for a couple nights and started me on a vial and syringe of NPH once a day. That was the style back then. Eventually, I morphed into twice a day and added some Regular insulin in. It was a general practitioner, and I remember he was a young guy who wasn’t fooled by my age. He did express some confusion at first, about it being more like “juvenile diabetes” than what most my age experienced. But he diagnosed and treated me as type 1, which I appreciate. I could have been put on a whole regime of T2 pills that didn’t work, with spotty results and health that didn’t improve until eventually I’d have gone on insulin anyway. That wouldn’t have made me feel as good as the insulin did.
How would you describe those initial years of learning diabetes in your 30s?
Most of those early years I was paying attention, but I probably could have done better. I started out on BG Chem Strips, where you had to wipe the blood away and it gave you a rough guide in matching up the color on the canister to see generally the range you were in. Certainly not as precise as the current meters. I slid pretty quickly into what’s now considered MDI (multiple daily injections), though at the time it was one NPH dose per day, then two and adding on R for each meal. I then moved to San Francisco in early 1986, and got an endo affiliated with UCSF who told me about the insulin pump as an option about two years after my diagnosis. I resisted for a year, until 1987 when I went back to him to start on an early model. I believe that was a Minimed 504, without any bolus calculator insulin on board – it was really a fancy syringe device.
How did the pump change your life?
I did well with it, and was also active physically with bicycling so everything went pretty smoothly. Of course, that hid some of the habits like eating whatever I wanted and taking insulin for it, but by fingersticking all the time it was something I could manage with 12-18 times a day. I did that for well over a decade. I was manhandling my glucose and beating it up with insulin. I was aggressive, and as a result I had a lot of Lows. Some caught me by surprise, and that shook my confidence. My biggest criticism from those early years was that, even though I was actively engaged in watching my numbers, they were too variable and it just wasn’t in a good place. Over the years, I was upgrading my pumps – mostly Medtronic – and eventually went to Animas Ping in 2008, and CGM (continuous glucose monitor) in 2009. That was a key change for me, before I started turning to a DIY system.
You were just getting started on a new career path at that time too…?
Yes, before going back to school for electrical technician studies, I cleaned chimneys and owned a chimney sweep business that I sold that in '83. I’d never found a job that I really wanted to do in life, but discovered pretty quickly that I didn’t want to clean chimneys for a living -- it’s not the healthiest profession, and climbing up ladders onto roofs chimneys with snow and ice, it’s a business for a younger man.
I saw a newspaper story about a job in electronic components, and it seemed hands-on and something I could learn. It was a clean job indoors, and it seemed like there would be a demand for that profession. But it was 1985 there was a recession, so I eventually took a job in Seattle and worked for an aerospace component manufacturer before taking a job with United Airlines in December 1985 as an aviation technician.
Did diabetes ever interfere with those jobs?
I took a physical for the UA job, and one of the questions was “Do you have diabetes?” I responded yes and was worried they’d let me go as a result, but it didn’t disqualify me. Although later I wanted to take a position out working on the line on the aircraft at the San Francisco terminal, and I learned they wouldn’t let me do that with type 1 diabetes. Even with my tracking my blood sugars so much, airlines – just like elevator and escalator manufacturers – have a duty to passengers and can’t take those kinds of risks so have been conservative. I was technically a mechanic and technician working on a shop bench, but I was also able to do different work like writing and being involved in union negotiations.
You’re retired now?
Yes, I retired in 2011. I was struggling with diabetes at the time and then got a gastro diagnosis that threatened my whole retirement dream that I’d had. I was saving for retirement for many years going back into my 20s, and as I got to this point I thought it was all in jeopardy because of poor health and my diabetes. So I decided at that time, I was going to do whatever it took – and because I was retired, I started reading more and spent more time on DOC (Diabetes Online Community) sites like TuDiabetes learning so much more about diabetes. Honestly, I have learned more from the DOC than any doctor in all my years of living with diabetes.
That part is great to hear! Can you tell us more about dealing with gastroparesis?
I’ve had stomach problems my whole life, but it was a period of time in roughly 2007 when it became much worse. My insulin just wasn’t working like it used to, and sometimes it wouldn’t move my BG number at all. During this five-year period, I had gained about 20 pounds, and just wasn’t feeling well. I was just lost, and went through three endos in five years and none of them helped me. None of them ever brought up gastro or insulin resistance in type 1, and didn’t consider it a factor.
So after an endo in San Francisco ordered a stomach-emptying test that came back negative, I flew down to the Mayo Clinic in Phoenix and was diagnosed with gastroparesis in 2012. He used the words “moderate, yet significant.” This all caused problems with diabetes. Now I’m doing fine with regular eating and my stomach can handle eggs and breakfast meats in the morning, and chia pudding and more protein. I was worried about this progressing complication, but it’s not as bad as I had once feared. I’m trying to count my blessings.
What did you think about all the doctors who hadn’t mentioned gastro before then?
It was a fallacy to believe that I could trust the doctor, and I realized then that they just don’t know what I know. That doesn’t diminish the expertise they have, it just helped me finally realize that I have a competence in living with diabetes that outstrips their insulin-dosing competence.
So you turned to low-carb eating?
Yes, that was a huge breakthrough for me. I knew about it, because there was a lot of controversy and conflict over that way of eating. I had been reading about it on TuDiabetes for a whole year, and it wasn’t until my gastro diagnosis that I eventually signed onto it. I jumped in with both feet, and was surprised at how easy it was to transition and amazed at the blood sugars that resulted from low-carb eating.
I’d already had a CGM for a few years at that time, and watched the averages and variability come way down. I realized I didn’t have to watch the clock for my eating schedule, but with higher protein and fat could be satiated for hours. That was an amazing revelation for me, and then I went through a period where I resented that the medical community hadn’t given me a heads up about this. Not to say there aren’t doctors that recommend and understand low-carb, but I was ill-served during that time.
How did your diabetic alert dog Norm come into your life?
The process actually started years ago when I had a severe low blood sugar resulting from a bad infusion site and stacking insulin doses from my pump and injections. It was a major event and total confidence-buster, and I wondered for a while if I was even safe for society. After that, I wanted to step up my game. I went on a CGM in 2009 and also learned more about diabetes alert dogs. I didn’t think a dog could really detect a Low, and thought they’d just alert you based on learned behavior from what they observed. I learned more and decided to go through training with a non-profit dog training agency in March 2010. There were seven people in my class for 10 dogs that would be paired up, and most of them come from the leader dogs for the blind.
Aren't there pretty strict rules about the behavior of dogs trained as medical companions?
Yes, Norm is one of those who is “dog-distracted” in that he can’t ignore other dogs, so he was dropped from that guide dog program and career-changed for people with diabetes. He was born in April 2008 and he was two years old when placed with me, so now he’s a little over 10 years old.
I’ve never had a dog before, but I think he’s like the “Lamborghini" of dogs. When I sleep in, he doesn’t come wake me up and he’s just well-behaved and responds to commands well. And he’s good looking, too! He also makes me more social with people and strangers on the street than I’m inclined to be otherwise. I’m pretty liberal with people interacting with Norm, as long as they ask. He’s trained to alert for anything under 100 mg/dL, and the advantage of that is there’s more opportunity to get treats for alerting to a Low. Ten years in, he’s better now than he has ever been on obedience, physically and in Low blood sugar alerting.
How is his accuracy compared to your CGM?
If I had to pick, I’d choose my CGM over Norm for blood sugar alerting, and all the data and insight it offers. Neither one is perfect, so having more than once source in case of Lows helps me.
But importantly, he doesn’t lag like CGMs do. They are 15-20 minutes behind fingersticks, but Norm can beat a fingerstick by 15-20 minutes. One time when I was living on a boat, my CGM didn’t go off for a Low but Norm jumped up onto my bunk to alert me. My CGM said 89 and I thought it was a false alert, but I rolled over and did a fingerstick and saw a 39… it was that period of rapid-falling and Norm knew it. I got up and treated my Low and gave Norm a bunch of treats, it was like a midnight party because he had such a good catch. And then by the time we were going back to bed, my CGM caught up and started beeping. There are maybe one or two of those a year, when I’m not paying attention to my CGM, and he’ll give me alerts.
Wait, you lived on a boat…?
Yes, I lived on a sailboat for 15 years after buying it in 2001. I was living in the Bay Area and while making a decent wage, that area was just too expensive in housing costs during that dot-com boom. I was renting and didn’t own a house after going through my divorce, so with landlords raising rent each month, it was nuts. I didn’t want to commute 90 minutes twice a day and spend all that money, so a guy who I worked with mentioned living on a boat in Hawaii before moving to LA and San Francisco at marinas. My hesitation was getting sea sick and not being comfortable if it’s cold and damp, but I learned more and found workarounds to each issue. I took sailing lessons to figure out I wasn’t going to be seasick, and was able to get a dehumidifier for the boat. I reduced my rent from roughly $1200 a month to $300 a month, and only 10 minutes from work.
Wow! How did you later get into DIY technology and building your own Loop system?
Someone on TuDiabetes asked me about do-it-yourself technology, but I wasn’t ready. He offered me an old Medtronic pump and served as my mentor. I first tried the OpenAPS version, but ran into problems and it wasn’t coming together. Then in mid-2016, he told me about a new different system called Loop that was just coming out and was a lot easier to set up.
I was able to get the hardware with the old pump and a RileyLink (communicator box), and pump supplies to get this started. It was great almost from the get-go, without many challenges in using it. I had also been following Dr. Stephen Ponder’s “SugarSurfing” mindset of being flexible without a set target, and that helped me in working with this DIY technology. Now, I am using less insulin, don’t have much glucose variability, and have time-in-range about 90% from 60 to 140 mg/dL.
Sounds like the DIY tech has made quite the difference for you...
Yes! When the #WeAreNotWaiting movement got its start (in 2013), I’m sure that some people didn’t understand where this energy came from. Diabetes patients have a distinct perspective from medical practitioners and others who claim to represent our interests. Instead of waiting for the right champion to come along, this cohort of competent patients and their close allies decided that they would not patiently sit on the sidelines and wait for that breakthrough scientific discovery or treatment. Instead they chose to pursue their own goals and agenda. Their success has been considerable and concrete. This movement has made my life better.
Since November 2016, I’ve been using an automated insulin dosing system that enables me to get a good night’s sleep every night. I usually wake up with blood glucose in the 70-99 mg/dL range. I am healthier and more optimistic about my future due to this movement’s existence.
What would you want to say to the diabetes industry, about what it can do better?
We need an industry of compassion, one that is confident enough to show new adopters that yes, these tools make life easier but no, you won't be lingering on disaster for a bit without them. I think healthcare providers and medical equipment companies should recognize the energy, knowledge and competence of the patient community. Things have changed for diabetes patients. We will never go back to being merely the subject of medicine and business pursuits. We can and will help move the interests of the larger diabetes community forward in a meaningful way. I invite you to reconsider the value of patient participation in your practices and enterprises.
What are you looking forward to at the DiabetesMine Innovation Summit?
I'm eager to learn about the many issues that affect people with diabetes. I rarely get to interact with industry, regulators, or doctors outside of a forum like this. Knowledge is power. I'm looking to learn what I can from this select group of people. Norm's looking forward his usual two bowls per day of his dog food. And any the treats he earns when he warns about a hypo!
Wow, what an incredible life you've had, Terry! We are looking forward to seeing you and Norm at the Innovation Summit in a few weeks.