Study on self-management of diabetes?

Hi all

Merry Christmas to all! Today I have been thinking about my friend's Type 2 husband, who doesn't have a clue - just "does what the doctor orders" which is take NPH 2X a day and measure his blood sugar 1x a day! My friend is very dear and if I'm in town I often spend Christmas at their house. Today I'm home, enjoying the Christmas tree lights and the rain and wind outside and making tamales ( tamales are traditional for Christmas in Guatemala where I lived two years and which I miss). The reason I'm home with the tamales and not at my friend's house is that Thanksgiving was a ■■■■■ because her husband hadn't eaten since breakfast, was obviously hypo and was extremely nasty to me. Even though his wife agreed when we spoke of it later that that's what was going on, it's happened before and she'll speak to him, I doubt it made any difference. He is totally stuck in thinking he is doing what he is supposed to because it's what the doctor told him. She being an RN tends to have respect for the medical profession and think I'm obsessive by doing so much on my own.

It seems clear to me that the problem with my friend's husband isn't the outdated insulin regimen (Kaiser saving money?!) or the 1x a day testing but not getting the concept that we are responsible for our own diabetes management and need to be proactive in learning as much as we can. It seems to me I remember reading on here about a study that was done showing how much better results were had by PWDs who were proactive in their own diabetes management. I think presenting a "professional" article, not just my own opinion might really be heard. I'd hate to see my hard-working friend get to retire in a couple years and then spend her time nursing her husband who has had serious complications. Thanks anyone who can find me a link!

...and a Happy New Year!

Tamales--yum! Send some to my house.

A dear friend has a T2 husband who also ignores diabetes. He's not on insulin, tests maybe once a month & takes Metformin. He goes for an A1c regularly, but has no real understanding what it means. His doc says he's doing fine, to lose some weight & keep taking his meds. That's the extent of the education he received. This man is extremely well-read & an engineer. Blind faith in his doctor & not concerned because he doesn't have the "bad" type of diabetes. I didn't even know he had T2 until I told my friend of my T1 diagnosis.

Don't think these are links you're referring to, but they have good info.

http://clinical.diabetesjournals.org/content/22/3/123.full
http://care.diabetesjournals.org/content/24/3/561.full
http://macrocognition.com/LOCKED%20PDF/Klein_Diabetes.pdf

Well he's doing a lot better than my friends father. He does nothing to take care of his T2. It's a good week if he checks his BG once a week. He is supposed to correct with insulin post meal on a sliding scale, but I doubt he even has insulin in his house. He also has terrible rheumatoid arthritis which makes him unable to do much in the way of activity. The two diseases compound each other and it's terrible to see. But it is his decision to behave the way he does; he's a very stubborn/proud man who hates being told he is "broken" or "diseased". He sees it that if he avoids the doctors and such he isn't sick because he isn't acting sick.

Anyway, the best two books (sorry, haven't seen any good articles) are The Johns Hopkins' guide to Diabetes and Think Like a Pancreas. The first discusses diabetes overall, however there is a lot of information on self management. The second is almost entirely based around self management of insulin dosing (under a doctor's supervision of course). Both are written by CDEs (Johns Hopkins' is written by a PhD, MD, and RN and Pancreas is written by a MS in Health Sciences). And all the health care professional I have dealt with so far recommend both books to learn about self management.

On a side note, self management is a fairly new concept. It started catching on and being respected in the mid-nineties and later. It really does smack in the face of modern medicine, where the doctor knows all (in most diseases this is true). However unless an emergency arises I see my docs once every three months. If I am constantly going hypo or my sugars are shooting through the roof I need to know how to manage that without waiting a week for an appointment. However there are many insulin dependent folks who for one reason or another don't want to or won't do this. I was diagnosed at the hospital after a coma. The floor I was placed on was unofficially the diabetic floor. More than 3/4s of the patients diabetic and the woman in the room next to mine lost her foot from complications of unmanaged diabetes. That's a quick wakeup call. My Resident there was a T1 and she spent hours after her shift was over teaching me the basics of self management. When I went to the VA they also preached self management. If they wouldn't I would have sought out a doctor that did. However some people either will not switch doctors or feel that a doc is right no matter what (which is what it sounds like he falls under).

Finally, NPH is an older insulin but it's definitely not outdated. I use it when I'm travelling if I can't get to a VA hospital to get my lantus.. It is cheaper than most other insulins making it ideal for people out-of-pocket who could not otherwise afford insulin. It's an oldie, but it's a goodie. The major downside is that the peaks of NPH are rather unpredictable even day to day in the same person (I can take it at 7 am and peak at 10 one day and 1pm the next day).

Anyways sorry I kinda got on a rant there. Good luck to you and your friends and Happy New Year to you as well!

Thanks for the info, guys. It's interesting to me, Suftromi, that you said you learned self-management at the VA, as that is where my friend (the wife of the type 2) works and she doesn't seem to "get it" any more than he does. I'm like you; I just go to my PCP to get prescriptions. If something came up I couldn't handle, I'd get an endo, but so far with reading and this site, I've learned what I need. Interesting you mention the Johns Hopkins book - I'm assuming you have a later addition. My ex-boss who was a type 2, gave me the Johns Hopkins book edition from about 15 years ago when I was diagnosed. I read it cover to cover and then went back to it again when I was looking for answers as to why my "type 2" diabetes was progressing so fast. It was too old to talk about LADA but it did have a chart that listed characteristics of type 1 and of type 2 that started me on the search that led me to the correct diagnosis.

I was actually thinking of giving Joe Blood Sugar 101 because it is basic, but I have my doubts he'd read it. He doesn't even want to talk with me about diabetes; it just doesn't interest him! (maybe it scares him but he'd never admit that). The only inroads I've made is when he told me he thought I was "obsessed with diabetes", I said "maybe so, but I'd rather go too far in that direction than just go to the doctor every couple months and end up losing a leg or my eyesite". He responded "that makes sense" but I don't know that he thought anymore about it after that. I thought if I could find that study specifically about self-management it would get both of them interested enough to look further than the doctor's door!

I understand some people do ok with NPH, but it's erratic coverage isn't great for someone who never tests! (Hence Joe's awful behavior on Thanksgiving!)

I believe we may have the same copy. Mine is the 1997 edition. It does only talk about 1&2, but it describes the two types well and in plain English which is why I recommend it. For insulin dependent T2 and 1.5 much of the information for T1 is applicable, especially where the discussions on insulin therapy are concerned.

On the VA - I've had some interesting discussions with veterans from different VA regions and hospitals - apparently all is not equal at various VA hospitals. Here in Phoenix my PCP is the director of the main outpatient clinic and head of the endo department meets with me after each appointment for a few minutes to ensure I have everything I need and I understand everything. I'm prescribed ten test strips a day on which I have a copay of a few dollars a month. This is in contrast to the northeastern regions where some vets I talk to wait six months to see an endo and are only allowed two strips a day. It's unfortunate that they are so wild in their treatment (and this applies to everything else, not just D) but it is a government system....

Your friend sounds a lot like my friend's father. One thing you can shoot for is getting him to make small improvements. Perhaps a full self management regimen is a bit too much. Compare persons A and B. A has great control, rarely going above 190 or below 75. Works out every day, eats perfect, doses on the nose every time. For her adjustments would be in the perfection range. Working out half units before bedtime to get her morning sugars perfect etc. Now B on the other hand drinks, smokes, never works out and pounds a quart of ice cream a night before bed. The adjustment for B would be a LOT simpler. Start with dropping the ice cream! If you tell B "Hey, let's work on getting those morning sugars right" he is going to get very dissapointed and keep eating that ice cream. But cut down/cut back on the ice cream and he'll see an improvement and slowly, very slowly he'll feel better which will make him want to do other things.

On the NPH, has he asked to switch to Lantus? My PCP and Endo both kept me on NPH till I asked to switch, simply because I was doing ok on it. It wasn't till I complained that I never knew exactly where the peak was that they switched my normal daily dose to Lantus. Assuming his insurance covers it (don't see why they wouldn't if they cover NPH) He could probably be switched. I'm guessing he takes two shots of NPH a day and if he's normal he wants to reduce his injections. Mention to him he could probably do one injection of lantus a day. It might interest him enough to ask his doc.

On the threats of complications, some people feel they're invincible. I used to (and still do to some degree which is why I learn and do as much as I can for this).

Well, to a certain degree, the type of paper you are asking for is a "non starter." For the most part, the medical profession has no interest in a study that suggests that the patient be at the center of managing a chronic condition. That being said, there are articulate writers who can explain things in ways that logically make sense. One of those is Jenny Ruhl at bloodsugar101, her book is also available on Amazon. The focus of most self management is testing (so called self monitored blood glucose) and diet control (generally through carb restriction).

In the end, someone who is an engineer and very analytical can readily put together the tools necessary to do self management. What is hard is making them realize the consequences of long-term elevated blood sugars and the difference between what the doctors provide and what they can achieve by taking an active role in their own care.

The meter does not lie!

In many ways diabetes self management is an engineering problem. Try something, test, refine, test again etc. Perhaps the Bloodsugar 101 book would work. The eat to your meter approach is the application of basic logic or engineering principals to the management of diabetes.

But in the end, without self motivation nothing will work.

FWIW, I am totally not mathematical nor am I an engineer. I don't think that you 'have' to be either, you have to be willing to accept that you are playing a 'numbers game' and play it? I think that you can play it with an intensity level akin to H2H Fantasy Baseball? One bad week isn't going to kill you but you really have to keep up an intensity level to 'win'. Maybe though 'winning' and 'losing' shouldn't be goals as much as 'improvement'?

See that’s the rub. My friend would never ask his doctor for anything, because he doesn’t have a clue he can or should. I actually don’t think it would be too honest to “bribe him” with going from two shots to one because he probably needs a bolus as well!

That does make sense, bsc, I just thought I remembered such a paper or such a study being mentioned. Yes, I have been thinking of giving him bloodsugar 101 but don’t know if he’ll read it. But maybe I’ll do it anyway and hope for the best.

Yep, it’s that pesky self-motivation (or lack thereof) I’m dealing with, BadMoon. I’ve tried a bit using my Motivational Counseling skills a bit and seen the tiniest light going on - maybe I needto do a bit more of that, keeping my frustration to myself while I do! (that’s the hard part)

The problem I have with using an 'engineering' paradigm (ha ha, pun!) is that that presupposes that there's a solution. There is sort of a solution, which is to test but as you age, doses change, life changes (job, family, other medical conditions) etc. crop up that are going to turn an 'engineered' solution on it's head? I can see significant changes in my daily BG AVG from very small adjustments to basal rates or carb ratios but I see them in both directions? Sometimes I need a shade more and other times I need a shade less. I don't think that I'm unique in that however I think that mentally thinking that a solution is engineerable will lead to disappointment somewhere down the road. I try to save as much disappointment as possible for when those $#%^&* sensors make blood pour out of my abdomen and other things.

To me, it's more of an art than a science. Which may, perhaps, also be my excuse for not writing anything down, other than what the CGM/ pump keep track of?

So you are the “bad” diabetic too Gerri! This summer, I was drafted into being on a committee to raise money to build a playground for the kids in my development. One of the women there said she was diabetic so I asked her what kind – she did not know that there were different kinds. As the summer progressed, I found out that she was planning on having the weight loss surgery to reverse her diabetes. She kept saying that her diabetes was good, so finally one day I asked her what her A1c was – that is not normally I would ask someone but I got tired of hearing her say she was a good diabetic and she was obviously someone that did not even know what that implied. The maintenance guy happened to be standing in the room and heard me ask her. He laughed & said that she didn’t even know what an A1c was. Then she said she knew what one was but did not know what her number was.

Hi -

It is difficult - although not impossible - to have much faith in self-management when you only test 1x per day and use NPH as a basal insulin. You don't have much information and you have minimal tools. A book like the "Joslin Diabetes Manual" by Richard Beaser might open your friend and her husband up to the possibilities of playing a more active role. It will require quite a few more test strips though....

Maurie

Thanks, Maurie.

It's all according to your personality. I write software all day. I see a problem, write a solution, test, fix problems, test, fix again etc. I have come to accept that in a complicated application perfection may never be reached. Another bug is always lurking somewhere in the future.

The human endocrine system and all the outside variables involved in determining what blood sugar is are so complicated that I don't expect perfection.

The thing that helped me the most after diagnosis was the approach promoted on the Blood Sugar 101 website. It's just an application of the scientific method or logic. Research, set goals, eat, test, adjust your food, test again, and on and on.

So to me, blood sugar control has the characteristics of an engineering problem, albeit one with no permanent solution.

Having said that, I don't pretend to believe everybody thinks the way do. Viva la difference. I thought it was a useful analogy given that the gentleman in question is an engineer.

Well, that’s true, I was mostly saying that it is not entirely necessary to be engineery about it? The testing and data part of it is certainly scientific but it seems as if there’s always a bizarro ‘spin the (insulin) bottle’ part of it too?

Your statement "To me, it's more of an art than a science." is a useful way of dealing with the fact that sustained perfection is unattainable for most of us.

Hello Zoe:

I have no link, but it does sound familiar? What was your friend nasty about specifically? You being there? Your opinion? You seeing him like that? You talking with his wife? Your ideas being very different from his understanding of what is right? All kinds of possibilities...

Does his WIFE understand what happened? RN's also have ancient ideas sometimes...

Stuart

No, the nastiness was nothing related to diabetes or talking to his wife. It was trivial things like my being "in his way" at the buffet table or turning off the tv. We irritate each other normally so I was the recipient of his barbs, but it was the degree of overreaction that clued me in that something was going on. It isn't what he was nasty about, but the strength of his responses and that it was out of character.

Yes, when I put out to his wife the next day my thoughts that he had been hypo, she hadn't overheard the exchange, but absolutely agreed that that was what was happening. For a normally very knowledgeable RN she does have very outdated ideas about diabetes, but in this case she was completely in agreement and said she would talk to him. Whether she'll encourage him to test more than once a day or talk to his doctor about putting him in a more updated insulin regimen and whether he'll take to heart anything she says is a whole other story!