Ok, here’s a quick ask for help. I have been asked to speak to some medical students about type 1 and technology. The good, the bad, how it has affected my life both mentally and physically. Talking points would include where I started and how each advancement has helped me through my 48 years. This will probably be the first time they have had much contact with someone with diabetes, so I want to get it right. So suggestions are welcome and remember these are newbies who don’t have a lot of understanding of diabetes and technology.
My comments here will be mostly about insulin pumps & CGM, although 48 years ago (I’m only 37, so 48 is more than I’ve experienced), so here is what I have to say.
It definitely gives me more freedom than injections, so you can decide what you want & how much to eat on the spot rather than needing to know beforehand. The CGM can also make it easier to figure out how quickly & how much different foods affect you, as well as give you an estimate until you get a chance to do an actual BG. Closed Loop Systems (I usually use the term Auto Mode, since I am a 670G & Guardian 3 user) can also help for overnight & when you are just having little appetizers at a party or other non-meal type scenarios. Being able to upload data from my meter, pump, and CGM for easier analysis by me and my doctor also makes it easier to improve my settings.
It is definitely a pain in the neck (but not a physical pain) to change the infusion set & CGM, especially in the unfortunate scenarios where the infusion set gets blocked or the CGM gives a bad calibration. Some people get more frustrated with this and certain settings than others, how frustrated you get can all depend on the person and scenario. More technology also of course means ordering more supplies, which of course nobody enjoys.
How It Has Affected My Life:
As I said in the good, freedom is a major plus that can change anybody’s life, usually in a good way. My first meter was not easily mobile, which I’m sure is true for you as well (being even older than me), so having the compact meters that look like thumb drives allows us to take them with us when needed, giving more freedom as well. I think the key word here is freedom.
I’m sure that you will have lots of good (and bad) things to say, and I can never say everything here that you can probably say when speaking, so I’m sure you will do a great job. Good luck, it’s good to know that students are hearing stuff from actually existing patients, because nobody can say it better than the people that have actually experienced it.
As a Type 2, I can’t give suggestions on the topics but I have given several presentations in public about how I live with diabetes. I have also performed in community theatre and found some insights gained there have helped.
People generally have short attention spans so keep topics brief and entertaining. Try to look your audience in the eye, connect with them, and if you feel they are losing interest, change the subject. You might have to improvise a bit as well. It is good to have an agenda but don’t be afraid to break from it from time to time.
Be yourself. People can see through you if you try to be anything else. Don’t try to be what you think your audience would want you to be. Even in acting, when we bring what we are into the character, we become believable. You are fortunate in this respect because you don’t have to act. Just be you.
Your audience WANTS you to succeed. They want to be educated by you. Bring that with you. Tell them what it is like to have diabetes and don’t hold back. I believe you will give a great presentation. ~ Mike
Try to explain how hard it is to be diabetic. It’s crucial. Tech and all are side pieces.
Yeah. For me, the impulse would be to go on and on. Get in the details. I could see the students in the back falling over and dropping like flies.
I think the challenge would be to boil this down to a high level that would fit into the timeframe afford a speech. For me, it would either have to be a very high level summary or taking a look at one very specific slice.
It actually sounds tough.
I would be interested to know what you choose to talk about.
If the focus is on technology, would you interpret that as starting with/focus on pumps, cgm ? Or are the faster, newer insulin a techie thing?
Or start with the days we tested urine glucose in test tubes and evolved to visual BG sticks then meters. I was “diagnosed” by pediatrician smelling my breath, and sending me directly to hospital.
I’m thinking of the charts showing evolution of man from apes. But you go from test tubes and syringes to Tandem and 670 pumps with cgm.
Maybe at the start, you ask for a show of hands, how many personally know or live with someone with T1D. Then you judge where to focus.
I would start with a description of what diabetes treatment looked like 48 years ago, back in the days of “daily fatal dose” and T1s are under 18 and all others are T2s and treated with sulfanylureas (sp?). Treatment required a RIGID diet plan with no variability in carbs/meal or timing. Since then, we have (1) improved insulins, both fast acting and flat(ish) basal, (2) meters for users to test, (3) MDI to allow flexibility in life, (4) the discovery that T1 diabetes is an auto-immune disease, and 10% of T2s are actually LADA, and there are lab tests to differentiate, (5) and finally CGMs, (6) pumps, and (7) looping. Other “minor” details are better needles, pens, the myriad T2 drugs (though I personally would focus on T1/LADA since I am LADA), food labelling laws, but computer technology to monitor and track may be worth mentioning. (Internet forums that make it easier for users to share knowledge is another great advance not available 48 years ago.)
Very much technology related: 48 years ago we didn’t have home bg testing. I don’t know exactly when that happened for you, but for me it was a completely revolutionary turning point in the early 1980’s. EVERYTHING before that was stone knives and bearskins.
Tell them how we used to go to the doctors every 3 or 6 months to get a bg test and at best the doc would call back a day or two after with the number.
No A1C’s back then either (not that matters much to hour-by-hour control) but heck nobody back then knew whether complications were caused by high bg or (as my doc believed) impurities in insulin. It wasn’t until the 1990’s that the DCCT results came out.
Oh, and exchange diets, not carb counting. Stone knives and bearskins, man!
One extra thought is that it would be useful to say When each change occurred, so that the med students get a notion of how fast (!) the technology is changing. How many times have I seen people on this forum frustrated by various medical professionals who have an antiquated notion of how to treat diabetes! Each advance was a big game changer: home BG testing, MDI, better insulins, A1C testing, pumps, CGMs, and now looping.
This hits on one of my first thoughts. Diagnosis. Too many people, of all ages, are un-diagnosed or mis-diagnosed.
I’d also introduce them to Looping (@Terry4 and many others can offer some suggestions) and to the #WeAreNotWaiting movement.
For those of us diagnosed 50 years ago, it wasn’t that fast !!!
Keep in mind a low percentage of type 1s have the latest tools, although surely increasing over the past years. Use by Type2s and LADA is even slower to keep up.
I agree that from a patient’s viewpoint, progress wasn’t that fast. However, from a doctor’s viewpoint, progress is definitely fast enough that “what I learned in med school” will be inadequate “real soon”, so keeping up with changing knowledge and technology is important.
The concept of LADA was introduced in 1993, but I was misdiagnosed as T2 in 2015, even though my BMI was ~25 and there is a strong history of T1 in my family (mother and 2 brothers). I even questioned it at the time and asked for an insulin blood test to try to differentiate between low production vs insulin resistance. Only after my brother (diabetic since '67) mentioned “Type 1.5 (aka LADA)” did I know to specifically ask for the antibody tests to get me correctly diagnosed. Doctors should get the message that this is a changing field.
What would the world be like if we could get good information from our doctors, instead of having to rely on other diabetics?
I think this is much more relevant to an audience of medical students, and therefore of much more interest to them, than a recounting of treatment changes over the decades, which may be engrossing to us but really isn’t that interesting to most of the non-D world.
Also for medical students, maybe a discussion of the many ways patients get information and ideas these days – such as from forums like this – and therefore we not only try things out for ourselves but also appreciate doctors (nudge, nudge) who collaborate with us, rather than take an attitude of “This is what I learned in my two-week endo rotation, so this is what you must do.”
Echoing this. Of all the things I would try to impart to a group of non D-specialist medical professionals, this one stands above all others. The whole point of the “Type 1” “Type 2,” as explained to me back when I was dx’d with “juvenile diabetes” at the age of 28 in 1983, was to break down the automatic assumption that if you’re not a kid, it’s “Mature onset,” that is, insulin-resistant, not insulin-deficient diabetes with all the treatment consequences that entails. And yet instead of having that effect, they have basically just mapped the new terms onto the old misunderstanding and continued business as usual.
In a nutshell: “Please stop assuming the single factor of age is sufficient to rule out a Type 1 diagnosis.”
As a rhetorical strategy, you might consider using this discussion as a narrative frame, along the lines of “I asked my DOC buddies what they would most want you to know and here’s what they said”–kind of an easy way to get it down to a short list of bullet points.
And speaking of the DOC, I would say that in my case that is far and away the single most life-altering tech development, because it was the avenue for learning about all the others–pumps, CGMs, different insulins etc etc–and also for emotional support. I went 20 years without ever meeting another T1, and now I’m in communication with hundreds of them.
Well T1 and T2 weren’t terms being used at all 35+ years ago.
It was “Juvenile Diabetes” and “Adult-Onset Diabetes” for most of the century, and then a little later “Insulin Dependent” and “Non-Insulin Dependent”.
But all the monikers come with stereotypes. I am actually thankful the stigma of the monikers and their stereotypes is not as severe as it was when I was a kid. It’s still not perfect by any means. But so much better.
True. But now being the other side of 50, there are times I’d rather like to be a Juvenile again.
Remind them diabetes is different for everyone and it takes doctor and patient to find the right treatment.
Also remind them that the patient is really the one responsible for staying alive and ultimately decides what’s working for them.
You and me may not be juveniles anymore, but our diabetes still is!!!