Tuesday, December 28, 2010

Wish list . . .

WishListI’m hoping you can help me out with a little wish list of sorts.  No, I’m not talking about what you wanted to see under your tree on Christmas morning.  Or what you hoped for during the eight nights of Hanukkah.  I’m not even asking about what you’d like the New Year to bring.  Nope, what I want to know is this . . .

If a brand new Adult Diabetes Outreach Program was starting up in your area, what would you wish for it to include??

You see, the dinner meeting I referred to in my last post was with a small group of T1 ladies and our local JDRF Outreach Coordinator (who is also the fabulous mom of a T1 daughter).  Our mission?  To work with JDRF to coordinate a local T1 Adult Outreach Program.  Our area is lacking any kind of group like this and we’re all very excited to be working on getting one up and running. 

Our first step - besides spending a large amount of time just socializing and enjoying each other’s company - was to brainstorm for ideas on what this program can and should include.  Obviously, we are hoping to make this group a huge success!  And who better to help us brainstorm for ideas than all of you?  Some of you may already be involved in programs such as this, and I’d love it if you would share your advice and experiences.  And most of you probably have thoughts about what a great Adult Outreach Program should or shouldn’t include, and I'd value your input!  Please leave your comments here - or if you’d rather go “off-the-record” you can email me at Karen@bittersweetdiabetes.com.

As we work to bring our T1 Adult Outreach Program though the planning stages and into reality, I’ll continue to blog about the process.  I’m hoping others will be interested to hear what we’re doing . . . and perhaps inspired to start up an outreach group in your own area!

11 comments:

  1. We don't really have an outreach, but we do have an adult T1 support group. But it sounds like you already have that.
    If I were reaching out to adults, I'd probably try to get some people to do pump info classes or CGMS info classes and maybe some question and answer sessions w/ a CDE or something. And some regular support type stuff. Have people come speak about the online community.

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  2. Thanks for your input, Cara!! No, we don't actually have a formal T1 support group - although there are a few of us that meet for dinners on a regular basis. The group we are working on with JDRF will hopefully be a combo of support / outreach! So any and all ideas and input are greatly appreciated!!

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  3. No matter what the form, I find being with other adult T1 people is always beneficial. There are always things to say. Moderated is best, as some people do not understand the concept of allowing others to speak.
    Also, having resource people (Pump, Insulin "footprints", CGMS, Obtaining Health Care) speak and answer questions would be very interesting to most.

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  4. Hmm, I am not sure since this idea in itself seems awesome enough. I guess just lots of opportunities for meet ups. Not necessarily speakers and agendas as much as time to really get to know one another.

    And Bacon, there must be bacon. ;)

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  5. Sounds similiar to what we're doing here in Indy. The local JDRF Outreach Committee formed a sub-comm about a year ago focused on Adult Type 1 outreach. Basically, we're getting together for a D-Meetup every couple months to just hangout, talk about upcoming events, rant and rave about JDRF and D-topics, connect with others, and whatever else might come up.

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  6. I love this! Here are my thoughts:

    A buddy program that matches the newly diagnosed with someone who has been there and can give tips on getting through the mundane aspects of day to day life with diabetes. Things like "Should I buy a bigger purse?" and how helpful a scouting trip to the grocery store can be when you're just learning to carb count.

    A directory listing each person and their treatment methods to include pumper/MDI/Oral meds (including brands), CGM usage, etc so that when an individual in the group is trying to make a decision about a change in treatment, she can contact someone with real experience.

    Physician reviews, both the doc and the office staff!!

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  7. I am just saying "hi" b/c I heart you Karen! I know I don't have any answers for this list. xoxo

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  8. I'll second Fiona's comment on a buddy program. The amount of info someone newly diagnosed needs to digest is massive, and physicians just aren't doing a good job of conveying that to their patients (and they aren't even able to touch the "living with the disease" aspect in the way we can.)

    A sidenote to say that there really should be a similar list for d-parents, I think, because nobody is better able to help support the parent of a newly diagnosed child than someone who's already been through the wringer and survived it. I can't even imagine having to go through the fear and trauma of it alone.

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  9. I'm on the outreach committee of my local JDRF, and supposedly if they have newly diagnosed adults contacting them, they'll put them in touch with me or the other adult T1 on the committee. So far, I haven't been contacted.

    I love that you have that group (and wish I lived closer so I could participate), and I hope you can make it all bigger and better. I don't have any ideas of advice though because I haven't figured out how to find other adults with T1 in my own community. I always feel like somehow I'm the oddball for wanting to hang with other 'betics since I can't seem to find anyone else.

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  10. I live in a very small town so I was excited to open my paper one day to see a diabetes support group. But it was a totally weird hours when people and I were at work. So I would suggest it be at a time people can come. I love your idea about getting together for dinner with others with diabetes. I may have to do something like that here. I just think it's helpful no matter where you live to get together with people to know you are not alone in your struggle and day to day like with diabetes.

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  11. I think any opportunity to get to hang out with other diabetics is very rewarding. Wish I was closer to you!

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