doing a little research...

[dragonsden923]

Hi everyone! I'll have to make this introduction quick, but hopefully i will have more time soon to tell you a little more about me. My name is Allison, and i'm a type 1 diganosed 15 years ago at the age of 11. Its been a rocky journey, especially the last few years, but i started pumping in september, and things finally seem to be going well

I'm new to forums such as this, but decided that it was time i started really communicating with people who know what i deal with on a day to day basis. i get plenty of support from friends and family, but as we all know, unless somebody has diabetes they don't really comprehend how it feels.

And now i have a request...my thesis project for school (going for my BA) is going to be an animated educational video for kids who are newly diagnosed, and i would like some feedback from people who were diagnosed when they were children, or who are close to people who were diagnosed. Specifically, i'd like to know:

What were some of the methods that were used in your diabetes education?

Is there anything you did or didn't like about those methods?

What would you have done differently?


Any feedback you can give me will be greatly appreciated!! and don't feel limited to the questions i have posted...tell me anything you think might be relevant!

Thanks everyone, hope to hear from you soon!

[morrisma]

Welcome and good luck on your project.
I was diagnosed 18 years ago and given almost no information that I can recall. The fact that I was in a high sugar fog probably has something to do with my lack of memory but I really received almost nothing until I started insulin nearly 2 years later after the honeymoon faded.
Mike

[dragonsden923]

Thank you Mike. Your experience sounds very similar to my own. I don't remember being told a whole lot when i was first diagnosed. Mainly just the nurses giving me an orange and a syringe to practice with.

[Dewey]

Hi Allison, and welcome to the forums. I was diagnosed 26 years ago at age 9.

Much like you, Mike and others who were diagnosed a while back, I learned to inject the orange. I think the question of "what would you do differently" is kind of a difficult one, because the knowledge we had back then as compared to now seemed way more limited. I would have liked to start using a blood checker (meter) sooner than I did, but the costs for them were higher back then, making them more difficult to obtain.

I think we did pretty well, given the situation and the means we had then. We had a local support group, which was wonderful. Families could communicate with one another about their doctors, treatment regimes, etc.

That said, I do wish that we had internet support groups back then also, as there's a wealth of information I've been able to obtain and learn on the 'Net. I'm just glad I've been lucky enough to have experienced both over the years. :)

The one biggest thing I would have done differently over the years, is getting an insulin pump way sooner (and seeing the doctor who helped me get on a pump way sooner!). The comparison of control through pumping vs. MDI (multiple daily injections, for those who don't know) is and has been phenomenal for me. There is another technique I'd love to try as of yet: The Untethered Regimen...but without the insulin I once used (& liked) on the market (Ultralente), I'm leery about trying it.

Hope this is of some help and please keep us posted on your progress with your project. Once again, welcome to the forums. :)

[SugarLife]

In the youth hospital they had a specialised diabetes team. When you made an appointment they would schedule endo, diabetes nurse and dietist in one block, so you only had to come once and see them all (this was great for parents, too, as they would have had to take time off from work etc., though I soon went by myself, as I was 12 when I was Dx-ed).

They payed a lot of attention to how I was coping with diabetes, like how things were at school etc. They adviced my mother to let all my teachers know and tell them that I should always have permission to eat in class and to go to the bathroom when needed. They had special teen's meetings that were educational and helped you get in touch with other young diabetics.

In the methods they used, they used a lot of pictures to explain what they meant, such as a diagram showing a human body in which there were small sugarcubes (glucose) and keys that opened the cells for them (insulin), the cells pictured with little doors that were unlocked by the keys. Another body was shown in which there were only a few keys left and a lot of sugarcubes piling up - this was to explain what diabetes was. Then they would explain that through injections the body was provided with keys again and the sugarcubes could enter the cells and I would have more energy! The pictures had bright colours and were on posters that hang in the room, so I would never forget how these basics worked and why I was there.

One thing that I didn't like very much was that the doctor said, on my first appointment: 'You don't have a disease, your body has a defect.' He meant to say that I shouldn't think of myself as being sick, but as someone who's body needed some help, but to me he was saying that I wasn't whole, that I lacked perfection (and I was a perfectionist then even more than I am now).

I don't know how they explained things to younger children, because some of the diagrams, e.g. of how Mixtard vs. Insulatard and Actrapid (comparable to Lantus and NovoRapid, which are much better for most people) worked, would have been too difficult for them.

The whole (youth) hospital was painted in bright colours (some calm colours, too, but a lot of bright things), there were toys in the waiting rooms, it was all very child-friendly. This made me feel welcome.

They taught me to inject by showing me how they did it on me once, then taught me how to do it myself without actually injecting and the next morning I had to do it by myself. No oranges or anything, because they said those felt different from a human body anyway. It worked great, I was really scared the first time and took ages before I would inject, but when I saw how easy it actually was, all went well. Later I developed a needle phobia, but that's another story.

After some time (they took things one step at a time) they gave me a schedule with two hands and a human body, where I could mark where I had injected or taken blood for a test. This helped me spread those. When one was full (and I had used all the different spots) I could start with a new one.

Well, this was all I could think upon for now - it's a bit of a mishmash, as I was thinking 'out loud', I hope it still helps.

[SugarLife]

I wanted to add that they were very clear from the beginning that diabetes was permanent, and they continued to mention this sometimes. They also confronted me, but not too often, in a gentle, matter-of-fact way with the possibility of later complications, but they never used this to scare me or motivate me to take care of myself - that would have been against their philosophy.

[Emm]

What were some of the methods that were used in your diabetes education?

My education was SLACK for a long time! My doctor basically told me nothing. I didn't even get offered a meter or told to get one. Just told to 'watch my diet' (not even told what foods to watch) and to see him regularly for tests.

It was many months later when I finally saw a diabetes nurse and she taught me a lot more. I didn't have an orange to practice on though - I actually did my first injection into the air, and my second (moments later) right into my belly. Quite pleased I didn't have to use an orange, I would have felt like a right idiot lol.

My true education came from forums and web pages though... forums more than anything else. No doctor could ever replace the education you get from people who are also going through it!

Is there anything you did or didn't like about those methods?
I didn't like anything about the way I was taught about diabetes until I started researching myself.

I have to give a couple of thumbs up to my diabetes educator though, who mentioned counting carbs and other 'modern' things that my doctor had no clue about.

What would you have done differently? If I was the 'teacher' (doctor or whatever) I'd have made time for a real explanation. I'd have recommended books such as Using Insulin, Think like a Pancreas etc. I'd have mentioned carbohydrates, that's for sure!

One thing I want to change about everyone's diagnosis is the mention of complications. I don't like that they bring on a fear of what 'might' happen, and then pressure us to keep our A1cs low. We end up with a fear of lows and a fear of highs and no idea what to do because we're missing so much information!

Admittedly this is one of my sore points... I don't really know that doctors could make it much easier, they are lacking in info themselves and of course lacking in time. Perhaps every newly diagnosed diabetic should be sent a link to the forums!