New video on T1D in the New York Times

I am wondering what other people think of this video.

I am going to withold my opinion for the moment as I'd like to get an independent read from the community....

I'm just speaking from years of difficulty that resulted from the medical community trying to push me into A1cs that too low for me. I wonder if that isn't a trend that other people have noticed. I have pretty dynamic numbers and some underlying epilepsy that made a low A1c pretty unmanageable/unattainable for me without frequent episodes of loss of consciousness. High 6, low 7, seems to be a good fit, but 5-something doesn't work at all. It took me a long time of fighting with my Doc to get her on board with this. I know it can go against the instincts of some practitioners. I start getting a little nervous at low-6's, which occasionally pop up. "The incidence of unprovoked seizures in the general population is 57 to 63 per 100,000 persons and the incidence of epilepsy is 46 to 48 per 100,000". Its real tough to check BG during a seizure in order to rule out low/high BG as the cause.

When I was first dx'd back in the dark ages there were still ballot measures being proposed--notably one in CA--to deny driver's licenses to people with "juvenile" diabetes. R/NPH was the standard treatment and finger-sticks still a way off, so it was kind of understandable I guess. I remember getting a pamphlet about how we had a duty to fellow juvenile D's (they didn't call it T1 yet) to be careful about avoiding insulin reactions during driving so as not to lose this right. The CA measure didn't pass and I think the whole idea died out shortly after, thank goodness.

I am a skilled "warrior" thank goodness! I believe in that young lady and am rooting for her. I am more afraid of crossing the street when I hit the streets, there is DANGER out there! Diabetes does suck but it is possible to keep the bg managed most of the time so that loading the cannon for battle isn't necessary all the time. I am one who tests a lot because I lack symptoms for lows. If this is the case for Grace then I understand her folks' concern. One way to make it suck less is to not make it a dramafest or a battle.

On the A1c I must say I am happy that my own "medical community" recognizes this measure isn't going to tell me whether I can drive my car or hike a trail right now. My HCP(s) do not push anything, they make sure I have whatever I need to live with my condition and not have to end up with seizure issues, high or low bg, or somplications.

I wish we could help them make it suck less, my thought is that the constant fear of dying needs to be eliminated. What sucks most about all of it for me is the constant need to test before making choices. But then I remember when doing those things was a WAY bigger hassle and really sucked.

Epilepsy would certainly make managing BG much more difficult and higher BG might be more appropriate however I'm not sure they are safer. I don't like A1C targets as much as I think that a better goal with diabetes should be to always work to do better.

Diabetes is work and, if you're doing work, it's a natural human tendency to try to do better (cf. Csikszentmihalyi "Flow") but I don't think that a 7 or even 6.5 or any number set as a goal is the way to achieve a particular number. The way to hit A1C goals is to work your tactical approach within the necessities of your life, whether it's knitting on your couch or running across Canada like Sebastien Sasseville.

An A1C of 6.5 seems to indicate an average BG of 140 or thereabouts. So maybe 1/2 your BG are +/- 10 points of 140 and then 25% equally distributed on either side somehow. If your A1C is 5.2, your average BG would be around 105 so your +/- 10 points, or maybe more realistically, +/- 30 points might be something that people could live with (75-135?) and then the outliers. You hit all lows with treatment quickly, which is much easier to do if you have a CGM, but can be done with a meter, if you have enough test strips. If you have a high, the same thing, you correct it. These outliers can be channeled into the 70-130 realm which, in turn, will increase the amount of time you spend there. I have found, and Clare, Sportster and Terry have also reported that doing this seems to lead to less ups and downs as you can kind of get into a flow state (flowabetes? LOL...) that sort of feeds itself.

When we accept a 180 or 200 as a post meal goal, which may be a very reasonable starting point, you will end up either eating at that level, because we are human and need to eat, or piling on whopping correction boluses, prebolusing, walking the dog and other tactics that we use to fix that sort of problem. It doesn't make it bad but I think that acceptance of higher numbers is more likely to lead to overcorrections which I would suspect are the likely cause of most cases of catastrophic hypoglycemia, which is how I refer to it when you pass out and might die if nobody was around. There are a lot of numbers between 200s, which will get frowny faces from many docs, and 140, which will make them happy and 85, which makes me happy.

The 85 might work for me and my buddies but why not try a number maybe 10 points less or more than what you're used to as a means of practicing to try to get closer to where you can flow with your diabetes and get into a rhythym with it. This is much easier with a pump as, if you adjust your targets, the math is done for you and you can simply roll the dice and see what happens, IF YOU HAVE ENOUGH TEST STRIPS and some carbs lying around, of course. That's the big thing and, if you are testing as you do this, you get very immediate biofeedback and I think that progress can happen. I don't think this happens at higher BG levels as the force of the unknown factors seems to get multiplied there. I'm a very small sample size but when I see a movie where someone is struggling, I want to look at their book, see the numbers and say "hey, maybe chill the basal after lunch" or "increase your AM ratio or whatever to get it somewhere different? I don't actually log anything and am very much a "seat of my pantsabetes" person but I noted that Grace in the video and/ or her mom had what appeared to be an exquisite log. If logging doesn't get you there, what else can you do? Maybe adding some challenge into it, as long as you have the strips.

I think BG testing needs to be considered a civil right. Wipe out the grey market and give them to us.

ooops, sorry for ranting so much....

Just passing along the comment that not everybody's playing cards with a deck of 52 cards...

Appreciate any and all ranting. Good perspective.

ooops, me too! Oh and also sorry for riding a Unicorn of good thoughts on my battle field. I forget that crying is more interesting than smiles. BTW "somplications in my last reply should be complications. Stupid speel cheekers LOL!! What is wrong with having a goal of normal whenever possible? Again, my doc(s) don't frown at this at all.

Here's the really incredible new thing for variable BG. Its predictive capabilities are absolutely incredible. Its long, but towards the end, you can see where they demonstrative incredible predictive modeling for really chaotic numbers. If your really into math, you might like it. If your not that into math, you might want to skip towards the end. Gives me a lot of hope about what is possible. I really didn't think predictive stats were gonna be able to achieve anywhere this, any time soon.

C’mon, Karen, Don’t you like the Everly bros.?

So much of what you say makes sense, acidrock23. Thank you for the thoughtful suggestions.

My own feeling about the video was the Mom laid it on super-thick at the beginning, piling on boxes of lancets and/or test strips onto the heap when both were already sitting there. Which, unfortunately, sort of set the exasperated/exhausted/fatalistic tone for the film. The family may have been coached, and had no say in the editing, which was designed to create drama. But I couldn’t help feeling sorry for how frightened everyone was, and a little angered that much of this fear seemed to be unfairly transferred to the daughter.

She’s 14, right? Yet her parents’ comments indicate they have ruled a CGM out for their child. Hello. T1D is their daughters’ to manage-not theirs. Doesn’t she get a say? Did she? As another poster noted, using one can help you feel more in-control, which is certainly true for me.

So, it was frustrating to watch. But I was diagnosed as an adult, and probably shouldn’t judge as my experience has been different.

Still, why don’t they let their daughter decide if she wants to try a CGM? And if they’re worried about her not hearing it at night, why don’t the parents try a Dex with its new alert features and kept it in their bedroom? What about Night Scout? A critical part of the picture is missing. I’ve loved reading everyone’s take on this.

The reason this bothered me is that the film seems designed to essentially show helplessness. A lot of us have a vested interest in showing just the opposite. I have to prove that I am “fit for duty” for my job every year, that is a subject that has been the source of an incredible amount of stress, fear, and anxiety since being diagnosed with T1-- my interests are in showing that diabetes can never even slow me down or affect my abilities. Therefore it does irk me a little when a filmmaker takes all sorts of artistic license to show what a devastating and debilitating condition it is. (When to me, it is not).

My reaction to this Is probably quite comparable to any member of a minority groups reaction to negative stereotypes of that group-- even if they do not apply to them personally

Lucky you Sam! That’s wonderful! I’m glad you don’t have the severity others deal with. But many people have commented on how similar the video was/is to their life when/while they were/are growing up.

If you’re a T1, you have major organ that doesn’t work, correct? It seems appropriate to me that you should have to prove yourself fit for a job if your job is to protect other people.

Someone already pointed out 2 people can have cancer but have completely different stages and outcomes. Is the one with a more severe case being overly dramatic because theirs is the more severe cancer & their regimine is more intense? Or 2 people with atherosclerosis, one might have more seriously damaged arteries than another.

the other thing to take into consideration is that she is a young female with different hormones that affect her in ways that don’t affect young males. Ask any Endo about T1 teenage girls and puberty & you will get an ear full of information. This young lady will hopefully have children one day, if that’s her desire, and that will also affect her body differently. She will be closely monitored throughout her pregnancy because of this, unless by then there’s a cure.

I thought it was nice to see that the family doesn’t shrug it off like it’s a cake walk and is making her responsible. It’s a team effort in our home too. I noticed some people decided to comment about the mom being a helicopter mom, which I didn’t get at all when I watched it. One of her teachers commented on the same site as the video about her being a mature, smart & wonderful girl. Her teacher didn’t have to do that but I was glad she did. Her mom doesn’t follow her around school all day. They were working on the video together. Hasn’t anyone seen a mom & daughter making a cooking video or other video together? Geesh…

Clearly, the film has caused people to think about T1 issues, which is always a good thing. And the thinking I've been doing about it helped me resolve some of my initial negative reaction to the video. I may be repeating what others have said, but I'll say it again nonetheless. I think we get so used to convincing ourselves that T1 isn't a big deal, we forget that it is a big deal. All of us spend a great deal of time regulating part of our body chemistry that is very difficult to regulate manually. We all would love a cure, but if the only message the non-T1 folks see is that T1 is no big deal, then they'll also think, a cure is no big deal. But we know it's a huge deal!

It's almost impossible to convey to non-T1 folks just how incessant dealing with T1 is and I think being more dramatic than some T1s might believe is necessary is how the film is helping convey that message. I'm currently reading Breakthrough: Elizabeth Hughes, the Discovery of Insulin, and the Making of a Medical Miracle by Arthur Ainsberg. It's about Banting, Best, and the other boys. Back then, it was clear that diabetes needed focused research and attention. People were starving to death before everyone's eyes. Now it's much more subtle, but the same research and attention is necessary, so movies like this are one way to make people realize we still need a CURE not just a treatment.

Well put!

i am the one who made the helicopter mom comment. if i were the mom of a diabetic child, i would most probably be a helicoptor mom. saying that, it was an 8 or ten minute video. i cannot say that this mom is smothering her child after watching a ten minute video, i have no idea.

if it was unclear in my post, i want to make it clear here: i think that children who are made to think that they are sick, vulnerable and are convinced that they must be taken care of by others are going to be negatively impacted. i cannot say that i wouldnt be the same in caring for my child, whether my child liked it or not.

i think maybe those of us with t1 cannot appreciate what it must be like to be the parent of a t1, or a spouse, carer. i am so glad its me with the t1 and not a child of mine. i rarely worry about my own safety. well, not rarely, but not very often. if i had to care for someone with this, i would be constantly second guessing myself.

Thank you for posting the link. The video touched deeply. I don't have Type 1 and I'm not a teen, but I came away with an understanding, if you will, of fear...of the constant (because I'm a parent?).
It is very feasible for this family to have known that many to have succumbed to lows, since there's a likelihood that Grace has met many other children with diabetes through camps and groups affiliated with the JDRF.
My heart goes out to the whole family, as they are embarking a time when Grace is wanting more independence, and nearing a day when Grace will go her own way.

Alex’s mom does bring up a good point that we may have to be a little more realistic about the model. Its complicated and we will have to trouble shoot it someday, probably. That’s gonna be hard if we aren’t realistic about all the variables that are involved in making the numbers come out right. We are all playing cards with a deck that’s less than 52 cards, unless your liver sends you greeting cards informing you of its weekend plans like mine does. (just teasing) It is super awesome that your able to do that, Sam, and that diabetics can fly planes. You all continue to keep me optimistic about what is possible.

Sam - I took a writing class many years ago and the professor used a metahphor to demonstrate the nature of the "truth" and its sometimes conflicting aspects.

She told us to imagine a city mansion surrounded by a fence and a dense hedge. At various intervals in the hedge were openings to permit seeing the mansion. At each opening people could observe the various facets of the mansion. When these various perspectives are compared, they, of course, do not agree with each other. In some cases the perspectives are contradictory. But they all view one facet of the truth or the totality of what this mansion comprises.

Your perspective of the social side of diabetes as it relates to workplace competence is valid. It seems crazy to concede weakness because it undermines your whole perspective. I get where you're coming from. In fact I take pride that a fellow PWD can go out into the world each day and shoulder tremendous responsibility. We are no less capable than anyone else!

The larger "truth" however subsumes your perspective and also includes the vulnerable side of diabetes. It is no less real than your competence and confidence. I don't think either of these perspectives is false. I just think they are facets of a larger reality.