Quick Survey - I'd love your help!

[tkim 8]

Hi all, my name is Tricia, and I am a fourth year medical student at Lake Erie College of Osteopathic Medicine (LECOM). My father was diagnosed with type 2 diabetes 15 years ago, and I'm very passionate about diabetes research. I am currently conducting a study on diabetes self-management education programs and barriers to access. If you are over the age of eighteen and have been diagnosed with Type II diabetes, please take a few minutes to complete my survey. The survey will not ask for your name or for any other information that could be used to identify you. I sincerely appreciate your help, time and participation!

https://www.surveymonkey.com/r/diabeteseducation2018

 

By the way, Tony approved this survey.

[princesslinda 2,839]

Just took your survey

[meyery2k 22,835]

@tkim - Took your survey

[TX_Clint 16,968]

Survey done!

[ran23 7,692]

me too.

[Dave_KC 3,010]

I actually did the survey when the original link was posted. 

 

[Kit 26,596]

I did it, but I have one concern.

 

Maybe this is just me, but the survey seems to carry the bias that the only way to manage diabetes well is to obediently take all the classes and follow all of the advice.  Except for those who are lucky enough to have doctors and the like who are more up to date on the subject, following those classes is actually a recipe for very bad control, lots of medications, and a really rough time.

 

The clinic I was referred to only held the classes around mid day during the week.  For one hour every day for 5 days in a row.

The clinic was a little over an hour away from work.  Which would mean I would have to miss 3 hours a day for 5 days in a row in order to take the class.  They also held a 1 5 hour class on a Saturday three times a year.  Thankfully I was diagnosed right after one of those classes.  By the time the next one rolled around I had figured out what I was doing.

 

The dietitian I was sent to, and who helped run those classes, gave me a diet that didn't even get me to the basic ADA guidelines let alone to anywhere near control that statistically avoids complications.  Thankfully I instinctively caught on to the concept of eat to your meter.  I kept dropping things from my diet because I reacted to them so badly.  Things I had been told to eat, that I had been told by professionals were what diabetics had to eat.

 

By the time I found this place, I was eating between 800 and 900 calories a day and still couldn't get my fasting readings under 120.  (I was 84 this morning.)

 

I don't want to rain on your parade, but we get a lot of people coming in here asking us to take surveys which all pretty much ask the same things.  Are you good and follow medical advice, or are you obese, lazy, and sit around all day eating Dorritos and chocolate.

 

Which takes me back to my first question about built in bias.  You mentioned in your post that your father was diagnosed diabetic.  I can understand that can inspire interest in the subject and passion about it.  But the majority of the medical establishment is horribly out of date when it comes to diabetes management.

 

If you are truly passionate about the subject, I invite you to browse the forums here.  Read about real diabetics lives, struggles.  What we eat, out activities.  Our frustrations, successes, struggles, and joys.  We are the real thing.  Not what we're supposed to be.  not what the ADA says we are.  Not what a less than 15 question survey can impart.

 

If you are truly interested in the subject, join us, learn from us, pass what you have learned on to others, help let people know that there are other options than starvation and ever increasing medications.  This is what is really important and helpful to others.

 

[adiantum 31,592]

I also referred to their bias & the dangers of it

[TX_Clint 16,968]

I left a similar content in the survey. I wasted half a day on one of those classes. The stupidity of it upset me to the point of changing doctors. I figured that if he set me to sit through that garbage he’s not going to treat me for anything.

[Fraser 7,379]

The class I was fortunate to take (it disappeared in hospital merger) was 2.5 days of lectures, from doctors nurses nutritianist, a trainer etc. all in a 100 plus page binder.   Plus two hours with the trainer individually, plus individual sessions with a nutricianist, phsycholgist, a nurse, who as a type two, a a trip to the supermarket. Plus one day we had a huge buffet, two pick real food from, we had count carbs and meter reading in front of the class

then once a month group sessions as long I wanted.  Yes we started with the ADA guidelines, but then ADJUSTED choices by eating to your meter. The classes worked really well for me, my doctor had to give me a prescription for the course and insurance paid the $700.00. We counted every Carr, food choice and meter readings before and after meals. 

 

Of of course most people just did not finish the class. But I credit it for my great numbers without medications 

 

i have also also taken the standard course, a couple of hours and plastic food. Standard carb amounts.  Now that was a waste.

[meyery2k 22,835]

All of this makes me glad I found DF

 

[Kit 26,596]

I sure am. It gave me the encouragement to try something different instead of keep doing as I was told and feeling like a failure. 

 

My doctor encouraged me to get a salad at the store deli that was chock full of sugar, hfcs, and dried sweetened cranberries. 

[meyery2k 22,835]

Yesterday at Rotary we had a diabetes educator visit us.  One striking visual was a simulation of "normal" blood and blood that circulates through a person with uncontrolled diabetes.  The "uncontrolled" sample was thick like syrup.  That really impressed us.

 

Most of her information was good.  She demonstrated how many sugar packets were in a can of Arizona Iced Tea by showing 1 serving and then explaining that a can of that stuff is 3 servings.  She emphasized label reading and macro counting and understanding what portions are.

 

She was not really bullish on low carb but she did mention that rice, pasta, grains, and so forth can make it more difficult for us to control our glucose.

 

Being in Hawaii with rainbows, she promoted eating the colors of the rainbow which had much more fruit than we would probably like to see but one could eat a rainbow of vegetables.

 

Overall, much better than I expected, and I think it could get someone at least started on the right direction.  She also suggested eating to the meter which would likely demonstrate that fruits are not a good idea.

 

When I explained that I found LCHF worked well for me, she was surprisingly accepting of it.  She told me she believes in whatever works for someone.  Refreshing thinking from what I have heard about these educators.

 

I have shared my story with her and hope to be able to present to one of her gatherings to show what someone with diabetes can actually do about it.  It is one thing to tell us what to do but another to see someone that does it.  It worked for me by seeing what you guys did here

[Kit 26,596]

Mike, what a gem.  I got a hostile reaction from one of my doctors when I mentioned the idea of eating to your meter idea.  Doctors should applaud the idea of patients keeping a close check on their numbers and adjusting their own diets based upon how they react to certain foods.  Of everything, that is likely the single most valuable tool we have.

 

You did remind me, there was one valuable thing I took away from the dietitian.  That was careful label reading and the tricks manufacturers do.  Like a pack of almonds is 1.6 servings.  Or, from someone someone else here said, a single cookie is 2 servings.  Or a can of soup with 2.5 servings.  What am I going to do?  Save that half serving for when I might want to open another can of that soup again?  Part of me wishes manufacturers weren't allowed to do that, to screw with their serving size on the labels to make their numbers seem better.  

 

I like the term eating the colors of the rainbow.  I actually try to do that as much as possible given my limitations.  A lot more green than other colors, but I do get in some reds and yellows.  Blues\purples normally have to wait for berry season in the summer. 

[Diana_CT 13,809]

My comments are that you do not ask any questions about outcome and self-management. So I wonder what data you are going to collect, is it just those who were offered training and accepted verses those who who were not offered the training?

I would have thought at the very least you would ask what was your initial A1C and your current A1C.

Another question I had since you identified as a medical student at a college was this approved by an IRB?

[Dave_KC 3,010]

11 hours ago, Kit said:

I sure am. It gave me the encouragement to try something different instead of keep doing as I was told and feeling like a failure. 

 

My doctor encouraged me to get a salad at the store deli that was chock full of sugar, hfcs, and dried sweetened cranberries. 

 

I yanked the dried cranberries off my salad at IKEA today...  gave them to my kids. 

[TX_Clint 16,968]

As long as it’s not too many cranberries it might be ok. But, I’d do like you did. Best to be safe. Now those darn croutons that I’m sure I told the waiter not to put in my salad are a real no, no.

[Dave_KC 3,010]

I'm a confident crouton remover!  

[Dave_KC 3,010]

I received a session at the doctor's office by one of the nurse practitioners on "how to eat now that you have diabetes."  There was some useful information, but having already used the Atkins diet for weight loss, I was pretty familiar with counting carbs, and limiting them.  So, I'd been on times with 20 to 30 net carbs and knew I could live on those levels of carbs.  

 

It's interesting that normally she expected people to follow a detailed regimen and record all their carbs to train them.  I had explain and showed enough knowledge that she didn't think I needed to present them the information.  

 

And I had already shown marked improvement in my numbers.  

 

But the reality is I've always gone dramatically lower than the 165 carbs a day recommended.  And I'm convinced that's a good way to be using expensive meds the rest of one's life and die of diabetes complications.  

 

Now I'm doing around 30 grams of carbs a day, moderate protein, plenty of fats, and having my morning numbers below 100, sometimes 90 nearly every morning.  And my last A1c, without meds, was 5.0 (and I was eating more like 50 at my last appointment.  

 

That's why I'm concerned about the nature of diabetes education and it being inadequate to actually help people.  

[tkim 8]

Hi all, thanks for your comments. The purpose of my study is to see if there are barriers to accessing these programs, not if they are helpful. There are many ways I could have gone about researching self-management education programs, but I chose access as the main purpose of my paper. Because my survey is anonymous and doesn't ask for any identifying information, I received IRB exemption from my institution. The survey is meant to identify the barriers that patients face in receiving these programs. I appreciate your time and thanks again for partaking in the survey. 

[Dave_KC 3,010]

Fair enough, but I'd suggest listening, and possible for a future paper or work in your studies, you might think about what we've said here.