My doctors office says that people are not really into diabetic support groups, well how come we can't make it fun like dinner with diabetics,here in the Des Moines area they have them for type 2 but what if your type one, i guess it would be fun to talk to others like myself about diabetes and how they deal with on a day to day basis any input?
Here in the Detroit area I got fed up with the “support” groups that were all geared toward newly diagnosed T2’ so I started a get together at a local Starbucks. Planning on another it September. It’s very casual and we just talk. There are new T1’s, old T1’s, pumpers, syringe users, pen users, CGM users. It’s nice, you should try and get a group in your area together. I just used this site and posted on the main T1 page, the USA Michigan page and the Events page.
I think there is a need for all different type of groups, more formal support groups, social get togethers, general “diabetes” groups and more specific groups for one or the other type and ages and genders. I’m getting ready to have the first meeting of a diabetic support group I am doing, sponsored by the JDRF which is for Type 1 Women. I understand that hospital or doctor’s office type groups would generally be for the newly diagnosed. I’m hoping to have a good mix in my group of ages, length of diagnosis, etc. I actually had lunch with one of the women who is interested in the group but can’t make the first meeting and I enjoyed it so much. If she hadn’t had to get back to work, we could have continued talking for another couple hours. It was my first realtime meeting with another Type 1 (I know several type 2’s) and I couldn’t believe how good it felt to talk about everything that we experience. I even loved watching her pull out her pen and bolus for lunch and realize that nobody at all was paying any attention. When she found a huge hunk of rice hiding under her salad I knew how she felt and encouraged her to go and ask for an exchange.
I definitely disagree with your doctor about diabetic support groups. I think social get togethers and support groups meet different need and many of us might enjoy either or both types of get together.
how do i go about finding diabetic people in my area the doctors office can’t give out that information and yes starbucks would be great because I’m a big coffee drinker,how did u get started with the get togethers?
I used the Tudiabetes site. I posted get together information on the USA - Michigan forum just asking if there’s anyone in the Detroit Metro area interested. Got about 8 positive responses and had about 4-5 people show the first two meetings. I’ve recently posted another get together. I also posted on the main page and the T1 page. I have some friends now in this area and try and send out personal messages to them also. I left a sheet of information with my Endo and asked him if he had a patient who he thought might be interested to pass on the info, don’t know if he did.
This is the 3rd area I've lived in since being diagnosed in 2004 -City of 125,000 -Town 15,000 - Town 2400 and I've found that in Larger Centres, the Diabetes Educators were not interested in helping me start a Support Group(we don't get paid for that, was their answer) until I moved here to Manitouwadge, Ontario, Canada. The Diabetes Educator here, has been very helpful in helping me start our group. She started by putting out a sign up sheet when the "Eye Van" came to town and asked people if they were interested to put their Name, Phone number, email address on it. This way, she didn't have any problem with the Canadian Freedom of Information Act.. Last week, she mailed out a Newsletter for Christmas, and in it put an Announcement letting everyone know about the new Group , listing my Phone number. She also meets with me prior to each meeting, to help me with material, and answers questions. At present we're meeting once a month. Our first Meeting in October 4 people attended, November 7 people attended, December 5 people attend. With people away for the holidays I feel that had an affect our Dec attendance. Hopefully, January will increase again. I've committed to Facilitating it for 1 year to give it time to grow, and then decide what to do from there. At each meeting I start with a Disclaimer, saying I'm just a Facilitator and that they should check anything learned with their DR or Diabetes Educator, then have each person, give a short summary of their experience to date with Diabetes and we then discuss what we'd like to talk about at the next meeting. We started in November with Label Reading, December - Carb Counting. Jan -- we plan to review. I try not to have it too structured with lots of time for discussion and group inter action. So far we've only had Type 2 attend, a mixture of pre diabetes, newly diagnosed and others under 10 years. I hope to have sine speakers in over the next 6 months such as local Pharmacist, Diabetes Educator, Doctor, Canadian Diabetes Association Coordinator etc. Any help that anyone could give me on how to maintain interest, other than consulting the group itself regularly, would be greatly appreciated Hope everyone has a Merry Christmas and all the best in 2011.
I think if you were interested in starting up a social group that met in say a startbucks, your Dr's office would allow you to hang a flyer with your contact info like your phone number or a website. Yahoo groups and meetup.com are great ways to start things like this. I would also try to find other endo offices and maybe whatever your large hospital is. I know in my area, JDRF has started a type 1 adult meeting group, and the next time I get an invitation to an event, I am going to ask the coordinator if she is interested in posting on tuD, they have a large database of names, but their turnout tends to be light, I think a lot of adult type 1's, once we see JDRF, we think fundraisers, and that's not the goal of this group at all. Another issue we have here is geography. It's a large, diverse area, and a lot of people have a hard time traveling more than half an hour, I know I do with my family. Would love to attend every event, but I tend to make the ones closer to home. They try to be fair and circle the 3 large cities in our area. Met some really nice people there.
Good Luck!
I go to a pump support group maintained by a local hospital, and with a CDE facilitating it. We are pretty informal, and talk about more than just pumps. However, being a small city (Reno, NV, with about 250,000) there are just not that many people on pumps who want to come.
We've had speakers, some of whom have been good, and some of whom just spout garbage (mainly dietitians!), but all in all, it's been fun.
The way the group gets new members, is that anyone with a new pump start-up, or who is thinking about a pump is given the information and invited to come. Or maybe make it available to all Type 1's (I'm the only Type Weird in the group!)
I used to go to another group at another hospital, and it was all older Type 2's on oral meds (I was in my 40's at the time), or diet, and mostly obese and the leader (a large woman herself) would say things like "Never go on insulin because it will make you gain weight!" and I got tired of it, and stopped going. Insulin not only didn't make me gain weight, it made me feel a WHOLE lot better -- I didn't want to argue with her, though -- SHE was the leader!
I guess groups are what you make of them -- it would probably be easier to start a Type 2 group just because there are so many more of them, and they are, as a rule, less well-educated than Type 1's, but that doesn't mean they don't want to learn more. It's just that their issues can be very different from Type 1.
If you want a Type 1 group, you will have to work harder, and it might help to have endo's or hospital CDEs on your side.
If you want to make a generalization about how well-educated Type 2s are, please, oh please, supply something besides your opinion. Thanks. In the meantime, I will try not to lose my temper.
Sorry I upset you. That's why I said "as a rule", NOT meaning everyone. The Type 2's on the e-mail lists and websites (which means YOU!) are by far more educated than the general population of Type 2's. I have met SO many Type 2's who think they can just pop a pill and forget about it. And if you say anything about it, they say that's what their doctor told them to do. Plus there is a lot of literature on non-compliance in Type 2. Which is compounded by the fact that a good number of doctors don't think testing is necessary for Type 2's -- there was a British study that showed that testing did not improve A1c's, but I think it was because the patients involved were not educated about how to use the results of testing.
In the minority communities, there are a lot of people who are very fatalistic about diabetes, and don't believe they can prevent complications, and so, don't even try.
This is not just opinion -- I read widely about diabetes, but don't take notes, so I can't quote sources. But if you want to look it up yourself, please do.
Most diabetics don't get near the education needed. From what I've read here & from T2s I know personally, it appears that T2s receive less time & education from healthcare professionals. A travesty that many are told next to nothing, as well as given misinformation & told it's their fault. My T2 friends believe all is fine as long as they take their pills & try to lose weight. They're relieved they don't have the "bad" kind of diabetes & don't see theirs as a life threatening diease. When I told a close friend that I was diagnosed, she mentioned her husband was T2 for years. I expressed concern & she said, "Oh, it's not a big deal. Lots of people have it. He takes pills."
I was talking with a girl at work whose husband is type 2, and he is having retina surgery for his diabetic retinopathy. I asked her if she knew what her husband's A1c was, and she said she had been to every one of his doctor appointments, but she had no idea what an A1c was. Boy, did I educate her. = ) Crazy, the misinformation out there is.
Natalie,
I think you meant to say that many type 2's have been UN or MIS educated( see Gerri's and Baby Tee's posts). However, I am sure what we have here in the DOC is not totally representative of the educational level of persons with any type of diabetes. You have to be somewhat more, if not educated, then more willing to learn and make changes in your diabetes care when you take the time to consult an on-line source.
The problem is in the misdiagnoisis and miseducation :Many type 1.5, LADA are missed by medical personnel and suffer with ineffective treatment for Years; Many type 2's are given outdated, ineffectual medication paradigms and very limited information about nutrition and exercise. Some type 1's have not ever been to see an endo and are still following outdated, less than optimum treatment regimens. I agree with Gerri, It IS a travesty of misinformation and "blame the patient".
Natalie, as an African-American I ,too, am well-aware of the fatalistic viewpoints of diabetes that many of my community share. They are surpised that I have an active life and am not on disability with 43 years of diabetes, many telling me of family histories of pain, suffering , and long drawn-outl death. That IS diabetes to many. I want that perception to stop, as well as a decrease in the number of many unwell diabetics who are examples of what COULD ( does not necessarily HAVE TO happen.
I would like there to be support groups that are culturally and socioeconomically sensitive to the needs of the participants, with consultants and facilitators who are at least familiar with current modes of treatment. We could have separate sub-groups by types.
The biggest hurdle to face is letting the medical professionals realize that they have to be open to teaching their patients that diabetes is a condition that can only be managed successfully by the patient him/herself, with team input . This is opposed to a "Do as I say do and Don't ask too many questions" approach .Diabetic persons need to be told that they CAN initially do many things on their own, As time passes and they learn more with education and trial-and-error ,they MUST do self-managment as independently as possible.,for the rest of their( hopefully active, fulfilled) lives. I think this is the major piece of education and acceptance that should be targeted, in small support groups..
No diabetic should be held to the assumption and negative postulation of '"It is too hard to take charge and make positive changes, so why try to teach it?" ( from the medical point of view). Or,"Why try to DO it ?"( from the person with diabetes' point of view).
Just my take on the matter. I do not currently attend a diabetic support group, but may start to go to one. I may even, once I have retired, START One. I am kind of passionate about this (
Can U tell? (LOL)
God Bless,
Brunetta
I help run a local diabetes support group in northern virginia. I make announcements in the Virginia group. At our last two sessions we had a presentation by a Dr. Wong of http://retinaeyedoctor.com/ and a tour of Whole Foods with their corporate nutritionist. Most support groups seem to be an outreach of diabetes educators, but mine is patient led. Yes, there are many newly diagnosed diabetics (usually T2s) who show up looking for support, but the heart of any group are people who come back time and time again. There are others on this board who also help with support groups.
Hi derry,
Just a thought, but if you're interested in starting some kind of diabetic-related group that would meet for coffee/dinner you could check out http://www.meetup.com/ If there isn't already a group in your area listed, start your own and post a link on your page here.
I had looked at meetup, but it is a pay service and would have cost me a non-trivial $ out of my personal pocket every month. There are many listings of diabetes support groups, I post mine here and on diabetesdaily and diabetes.org forums. I also have had my group listed in the following sites:
http://www.defeatdiabetes.org/support_groups_virginia.htm
http://www.jdrfcapitol.org/support-groups/
http://www.dlife.com/diabetes/locator/search.html
http://www.isletsofhope.com/diabetes/support/main_1.html
I also list my group on the event calendars at dlife and diabetes.org.
If you look through those listings and are unable to find a local support group, let me know. I have further resources.
I'm in a support group in St. Louis for type 1 women only. It is a great group of ladies, we frequently have a topic of the month, bring in speakers on whatever WE want to talk about and share our ups and downs. It is reassuring for me to know I'm not the only one going through whatever, and I get to hear strategies from other women that I'd never thought of.
Something about being among your own kind............
My group was started, more or less, through JDRF. A diabetes educator, who is also a type 1, is our moderator. I'd recommend a good support group to any diabetic. And not all of them are good, unfortunately.
I'll back up Cara on this one, I've been to a number of groups. The most common kind is an outreach group with strong lead from a diabetes center or CDE. It is often run as an educational group. Personally, I don't want that. I have very little interest in that. I want to talk to other diabetics about what we have in common, about dealing with the stress and complications of our lives and often people just want to talk about how they are feeling with other people who understand.
My concern with making a generalization like "type 2 diabetics are less educated" is that it
a) doesn't differentiate between medical education, which is given (or not) by the medical community, and the educational level that the diabetic may have already attained. I think people assume that type 2 diabetes is completely avoidable, and that it is therefore a disease that you get through ignorance of how to eat, how to exercise, etc. I have several advanced degrees, I ate right and exercised daily. My problem is that I ate low fat, and ate probably 60-70 percent of my diet from carbohydrates before this happened to me. Guess what? That doesn't work for people who are genetically cut out for metabolic syndrome.
b) pins on the person with diabetes, or the community with diabetes in the case of certain groups, the misinformation that is provided to them by the medical community. And that's just not fair. Doctors feel they have to intervene more with Type 1s because the consequences of not doing so are immediate and dire. They are more laissez-faire with Type 2s and they ought to be just as vigilant about prescribing meds, sending people for education, directing them onto the internet if they have internet access.
Hi Cara - We could be sister groups. I started a Type 1 Women's Group here in the SF Bay Area, also with the support of the JDRF. So far we keep ours pretty unstructured and haven't run out of things to say. In January we are going to be having a potluck at a member's house to get together more informally. I love the group and agree that it is a really great experience to be with people who are going through what you are. They even inspired me to start the process to get a pump! (It had been in the back of my mind, but hearing the women in the group talk pump made me realize it was possible for me as well!) I encourage anyone wanting to start a type 1 group to work through JDRF. They put out the word through their networks and it really helped get the group going.