Here here, Richard!!! Do you think there are more, different, or better ways that we can spread truths about diabetes? I love suggestions :)
StAilbe, do you know about our group for people with diabetes and depression? It's got 448 members and is a pretty active group. I wonder if it might be helpful to you?
Nell, we don't want you to leave! I am GLAD to read your feedback, and I think you make some really good points. It sounds to me like we have room to improve the messaging we send out during fundraisers, so it is clearer to people exactly what their donations go toward (it's more complicated than it sounds, but that doesn't mean we can't do a better job of it!).
I agree whole-heartedly with your point about the search function, and I know a lot of others here do, too. We're working on it! Unfortunately, it has to do with the platform upon which the entire site is built, so improving it is a complicated project that's taking time.
I love TuDiabetes and go on it frequently. My only problems really are technical.
Like many have said, an improved search function would be great. Also, although I love the idea of the “groups” and I think they go a long way towards fostering a sense of community with the people on the site based on their shared experiences, I think a restructuring of the Discussions section could be useful. I realize it would be a huge technical undertaking, but I can’t help but feel that a more traditional forum platform would be easier to navigate and make posts, respond to threads, etc. Like I said, I know it would require restructuring everything, but I would love some way that the “groups” system could be integrated into a more traditional-looking and traditional-acting forum.
Hi Nell,
Thank you for letting me know how much you appreciate TuDiabetes and that you'd like any donation you make be designated for this program. I am sorry to hear that you were discouraged from doing this in the past.
Donations need to go to the Diabetes Hands Foundation because that is the organization that runs TuDiabetes. The foundation is recognized by the IRS as the nonprofit organization and has 501(c)3 status. TuDiabetes is one of three programs the foundation runs.
You (and anyone else who wants to) CAN designate your donation to DHF be used to support TuDiabetes or any of our programs. Yeah, it makes more work for us but that's our problem not yours.
If you mail us a check simply write "Designated for TuDiabetes" in the memo line. It also helps if you include a short note calling our attention to your wishes.
If you use our online donation form put the words "Designated for TuDiabetes" in the In Honor/Memoral field after clicking the radio button next to In Honor.
I hope this clears things up. If you (or anyone) have any other questions or concerns about fundraising for TuDiabetes and DHF feel free to contact me via email to corinna@diabeteshf.org or with a post in this thread.
With warm aloha,
Corinna Cornejo
Development Manager, Diabetes Hands Foundation
I agree with Rick about the amount of balance between Type 1 & Type 2. As a type 2 (on insulin pump) I find that there have been a tremendous number of benefits for me, especially since I went on the pump. This site has provided a more consistent resource, with feedback from other users, than any other Diabetes site that I've found.
I find that feedback from Type 1s is helpful to me, as is feedback from type 2 - I would not say that there are more benefits for one type over the other.
I also agree with the opportunity to improve search. It works okay today, but there is room for improvement. This is pretty common on other forum sites that I've seen on the net.
Most importantly, I want to thank the staff and the Diabetes Hands Foundation for making this resource available for us. It is what we all make it, but without the enablement that you've all provided, we would not be able to make it as great as it is. Thank you! :)
Emily, Riva Greenberg wrote the book "50 Diabetes Myths That Can Ruin Your Life and the 50 Diabetes Truths That Can Save It". That may be the longest book title I have ever seen, but the book is excellent!!! I would recommend taking one myth at a time and thoroughly explore it on TuD. Myths and annoying things people say about D is always a popular topic in all D groups. I see it so often on Facebook. A few days could be allowed for each myth, and then another one could be posted. If this program was advertised ahead of time, to all members, we might get off to a good start. It would pick up in popularity and the whole thing might be very educational. Members then could be requested to post their own annoying things they have heard others say.Later on this could become one of the GROUPs so it could be ongoing, or it could just be in the discussion sections. Riva's book might be an excellent source for getting the myths. I am sure we could come up with more, later on.
This site "did NOT" meet my needs, which was actually very surprising, since I interact on forums/boards (professionally) and have always had overall good/positive experiences. Let me know if you distribute an anonymous survey, and I'd be glad to include details---I wouldn't even dream of mentioning them here/now (knowing well from my past -bad-experiences I'd be torn apart again)...
Hi and thanks for ab great initiative. However as a foreigner I note you have missed an important area. Namely:
tudiabetes (The Group) Must be relevant to a wider potential membership bass, (The World)!
For obvious reasons most of the current conversation use terms, brand names, and titles not common outside the United States. For tudiabetes to have more relevance to a wider diabetic community this needs to change. Currently I see no recognition of this, which frequently limits the groups usefulness to me. As a well traveled member (working in 23 countries 4 continents) I cope reasonable with this. Most non US residents will find this a barrier!
I think you should revise your list. Thank you. Albert (muleman)
You multiply by 18 to convert!
I find this site amazingly helpful. I have learned so much, heard about new products, posts by others that answered my questions and met some very inspiring people. And when I have been completely rattled by D, the people here have been supportive and helpful. What I really want from this site is that support--to me and from me to others.
I have been "torn apart" like alexmac, so I want this site to be respectful. I have had problems once or twice. Sometimes it was a really mean response. When that has happened I usually stay away for a while, to lick my wounds, so to speak, but I always come back. We are all here to help each other. If my opinions are not yours, AND if your opinions are not mine, so what? It does not hurt to listen to another point of view without rancor towards the poster.
What you are doing is not new - it is actually a throw back to the distant past. It was the standard treatment forty years ago, when one injection a day of basal insulin was a standard treatment regime. It requires one to eat food and balance exercise against that basal curve and not the other way around. This is sometimes called "feeding your insulin", since it is your insulin injection that determines when, what and how much you should eat at any time of the day. There were also no blood BG tests back then, so urine testing was the only way to check for high BG.
Speaking from first hand experience, it is possible to keep one's BG relatively stable in this way, but it is really limiting in terms of making food choices and meal and exercise timing - you need to eat or exercise when your insulin tells you to, and not when you choose to. If you don't use basal doses of fast acting insulin to cover large meals, then your only other alternative is to use exercise to push down your BG when it is peaking. So I would often go for long runs after eating my meals, even if I would have preferred to exercise at another time.
All in all I did not like this regime at all, and far prefer to check BG and exercise and bolus for meals that I can eat when and in the amount that I choose. But that said, I have spoken to older T1's who were happy with the basal-only approach they learned decades ago, and have stuck with it and continue to make it work for them to this day. So if your son is one of them and makes it work for him, that's great. But you should be aware that there may be advantages to him of switching to a more modern basal/bolus insulin treatment regime.
And I would suggest that testing only once or twice a day is a really bad idea, because it may be covering up frequent highs and lows that balance out to a respectable A1c. The acid test for whether this scheme is really working well is to test every hour or half hour for a few days, and see what his BG is really doing. You may be surprised.
One more thought: When I am following a discussion, it would be nice to have the hyperlinks to the pages at the top and bottom of each page.
I am not on chat much but I do check by it coming into Tud. sometimes.. The moderators or just support team that is on there is just WONDERFUL. That is just one of the many things Tud does so well.Thank you !!
I agree with Nell, and won't give money unless I know where it is going, and when I looked to find info on Tu, I found nothing. How big is the budget here? What are expenses and how much income and from where? How much money comes from selling direct advertising? How much money comes from allowing third party advertisers to track visits here? Who on staff is paid and who is volunteer? How much are the principals paid? All information that might be uncomfortable to disclose, but which would be well worth discussing if you are serious about competing in the crowded field looking for charitable donations.
Also, Lessil, please see an earlier answer I gave to you in this thread which you may not notice since it is now buried a couple pages back. And by the way, that is one of my pet peeves about the way the site's software displays discussions here - that it is easy for posts to be lost and never seen by the people you are trying to respond to.
And I agree with the need for an improved search function - maybe it could be added fairly simply by providing a detailed search page that allows specification options like searching from a given contributor, within certain groups or forums, within a certain date range, etc. I can't even find my own posts that I made a long time ago, although I'm know they're buried in the database somewhere.
I too feel there is a balance between Type 2 and Type 1 here.
I need that, a community that is non judgmental...I also need a community in which I feel relatively safe. Where what I say, even if my comments are rather generic, will not be twisted to harm my character.
I have, here at Tu, gathered many dear friends....have found a calling to support and conversely have BEEN supported numerous times.
I agree that a quickly accessible library of information is needed....at your fingertips. It's counterproductive as a Care Team member to have to search for info/groups etc while on chat if someone needs it "right away".
While having a chat full of wise, experienced adults is greatly appreciated and even integral to the way the chat functions, as a teenager with type 1 diabetes, I would love to be able to chat with more people my own age who can truly understand the difficulties of dealing with diabetes in this generation. Perhaps making the website more teen-friendly could be a big improvement?
Lessil, you do realize that this thread is about how to improve TuDiabetes?
Lessil Richards, What all that got to do with how tudiabetes can be improved?
Start a Teenage Group Here! but then would you use it?