Many of the following ideas have been used effectively in online support groups for many years. They definitely work. I've combined these ideas with the health support group structure used for many decades, very effectively, by La Leche League (LLL).
LLL is an excellent model for diabetes activists, because they succeeded very well in promulgating health information that flew in the face of contemporary medical practice without alienating doctors or those who they wanted to reach. Their belief that babies did better if nursed seems tame nowadays, but when they started out in the 1950s, their message was radical.That it is now mainstream is mostly due to their efforts.
For that reason, LLL makes a very good model for those of us with diabetes who would like to save others from the blindness, amputation, kidney failure and heart attack death that is almost guaranteed by the lackadaisical way that mainstream health organizations and family doctors currently treat Type 2 Diabetes.
How to Organize a Successful Group
Look for people who WANT to learn more.
Don't attempt to convert people who are sure their doctor is giving them all the care they need. Look for people who are concerned about their poor blood sugars and know that they need help in improving them. Don't debate people who aren't interested. Just mention that you're holding a support group using some new techniques for blood sugar control that have been very effective. As people in your group succeed, a ripple effect will reach others who might not be interested at the outset.
Don't Identify the Group with any Specific Dietary Approach
Make it clear that no one will be told that they have to eat some specific diet. Stress the group's approach is to help people learn what it is that raises their own particular blood sugar so they can find a way of eating that works to avoid damaging spikes. Tell people the only diet you are interested in is a "low spike diet"--one that avoids blood sugar spikes.
By avoiding the "diet wars" you eliminate the number one reason most people with diabetes turn off to support groups.
Make it clear that you are selling nothing at your meetings and that the group's philosophy includes the idea that no one will ever tell another person what they should do.
Avoid having anyone take a strong leadership role. Let the facts do the talking. Let people share what has worked for them and information that they have found useful, but don't let anyone tell anyone else in the group what they must do.
The job of the group leader is to coordinate the meetings and as the group grows, link up new people with experienced people who act as sponsors and give them one-on-one support outside of the meeting structure if needed.
What to Do at Your Meetings
Hold your meetings at an interval that works for you and other members. Once a week would be great, but even once a month can work.
Plan on cycling through the following four topics, one per meeting. The format should include a brief presentation of the Key Idea followed by an open discussion of the idea by those attending. At the end of the meeting suggest a "homework assignment" which will be used during the next meeting. Explain that participation in these assignments is optional but very helpful. Here is a format that may be effective:
Meeting One: What Are Safe Blood Sugar Levels?What is a normal blood sugar?
Explain what the mg/dl (or mmol/L) blood sugar measurement means. Explain if we define "normal" as the level at which people have none of the complications caused by blood sugar, including an increased risk of heart disease, truly normal blood sugars are in the range 70-87 mg/dl.
Explain that a true "hypo" is a blood sugar under 70/mg but that people who have had dangerously high blood sugars for a long time may feel as if they are having a hypo when their blood sugar is still abnormally high, even over 100 mg/dl though over time, if they keep their blood sugar in the normal range they will get over this feeling and feel normal at normal blood sugar levels.
Explain the difference between what you are measuring with a fasting blood sugar test and with a a postprandial blood sugar test.
Explain what an A1c test is and how the value it reports is related to average blood sugar as measured by your meter. Explain how post-meal spikes and elevated A1c are associated with the development of the various complications.
Discuss the research data suggesting that when people allow their blood sugars to spike over 140 mg/dl (7.8 mmol/l) they are damaging their bodies.
Briefly cite the research showing that neuropathy and retinopathy start to occur when people are spiking to this level on a glucose tolerance test. Explain this suggests that they are also spiking to that same level after every meal which is what actually causes the damage.
Explain that these levels seem to be where organ damage starts even though doctors consider them "prediabetic." so our goal should be to set blood sugar targets lower
than these levels--in fact, at normal levels.Set healthy blood sugar targets
Explain that the key to staying healthy and complication free is to strive to achieve the Joslin Diabetes Center's normal blood sugar values
as their blood sugar targets. Explain that hundreds of visitors to the online support group, alt.support.diabetes have been able to achieve these targets even though many of them started out with A1cs over 13%.
Explain "The 5% Club"
- Fasting: under 100 mg/dl.
- 1 hour post meal: under 140 mg/dl
- 2 hours post meal: under 120 mg/dl
Show them the research demonstrating a straight line relationship between A1c and heart attack risk pointing out how much safer they are with an A1c near 5% rather than 7%. Explain that hundreds of people have achieved A1cs in that range by shooting for the targets discussed above and that they can too.Provide Support
This information can be frightening to people whose doctors have told them that they are doing fine with A1cs in the 8% range or fasting blood sugars in the mid 100s.
So when you present this information assure them that as low as these blood sugar target sound, they are very attainable, and that you know many people with Type 2 diabetes whose A1cs have been as high as 13% who have brought them down to the 5% level within only a couple months using simple the techniques that will be covered in the 4 week discussion series.
Go round the group asking people if they'd like to talk about what their worst blood sugar numbers have been and what improvements they've made already. Let people from previous support group meetings talk about what they have gotten from the support group so far.
Suggest this "Homework": Ask people to measure their blood sugar three times the next week. Fasting, 1 hour after dinner and 2 hours after the same dinner. Also ask them to find out what their most recent A1c test result was if they have had one.
Meeting Two: Your Meter Can Save Your Life. How to use Blood Sugar Testing to Get Much Better Control. Learn when to test to see what is causing blood sugar to rise
Explain that testing once a week or fasting doesn't give you the information you need to bring down your blood sugars, because it doesn't show you what is raising
those blood sugars.
Explain that testing after meals does
give you that information. It allows you to see what foods are raising your blood sugar to dangerous levels so you can adjust your food intake to where it no longer causes damaging spikes.
Stress that no one can tell you what to eat to get normal blood sugars. We each have very different metabolisms, and a food that works very well for one person's blood sugar may send another person's blood sugar into the danger zone. Only by testing your own blood after your own meals will you discover what foods your own body can handle. Discuss meter accuracy.
All meters sold nowadays are much more accurate than the manufacturers claim they are and that inexpensive drug store meters are fine for people who don't have insurance coverage. Explain that carbohydrates, both starches and sugars, turn into sugar in the body and raise blood sugar.
Explain that "complex carbs" still get digested and all the carbohydrate they contain gets into the blood stream and raises blood sugar, though in the case of very slow carbs, like pasta or some sugar alcohols, it may take anywhere from 3-6 hours for you to see the spike they cause with your meter, so that testing at 1 or 2 hours may miss the spike they cause, which is why nutritionists erroneously suggest they are good for people with diabetes. Suggest that they keep a blood sugar log
noting what they ate and what their numbers were.
Suggest strategies for testing when you can't afford too many strips, for example. Test 1 hour after lunch one day, 2 hours after eating the same meal another day.
Open the meeting to questions about blood sugar testing and meters.
Homework: Suggest that for the next couple days they make no changes to their eating patterns but merely test as often as they can 1 and 2 hours after eating different meals and note down the numbers they see. Then in the following period, suggest they work on improving their numbers on a specific meal by using a smaller portion or by substituting a less carb-rich food. Ask them to bring their testing information in to the next meeting.
Week 3 - Discussing Results and Suggesting Improvements
Go around and ask everyone to describe what they ate over the past week that gave them the best numbers. What gave them the worst? What change did they make that gave them the best improvement in their blood sugar numbers?
What food surprised them? Did they see an impact from decreasing portion sizes? What substitutions worked? Discuss some effective strategies you have used to lower blood sugars after meals
like cutting back on carbohydrates or changing portion sizes. Ask people with good control to share their strategies.
Use the 12 Step approach: Simply describe what you do that works for you. But make it a rule that no one in the group will ever tell another person what to do and no one should offer suggestions to another person unless that person asks
This meeting is a good time to discuss topics like why blood sugars are often highest at breakfast and some suggestions for a non-spike breakfast. Also ideas for what to eat at restaurants, parties, work lunches, etc.
Homework: Based on the numbers they saw in the previous period, each person in the group should set a blood sugar target for themselves that would represent an improvement for them, and start working towards it.
Week 4 - Using Medications to Achieve Blood Sugar Goals
Prepare a handout listing the common oral drugs used for diabetes and what it is that they can and can't do.
Drugs to cover briefly would be Metformin, Avandia, Amaryl, Byetta.
Stress that these drugs rarely let people with Type 2 diabetes achieve healthy blood sugar targets unless they also modify their diet to avoid spikes.
Explain that metformin is now the drug that doctors are supposed to prescribe for people who can't get good numbers with diet alone, and that helps with weight loss and lowers triglycerides reducing cardiac risk.
Explain that Amaryl may raise cardiac risk and that it is known to cause extreme hunger and weight gain.
Explain that Avandia may reduce insulin resistance but by forming new fat cells and causing weight gain and that in some people it also causes dangerous swelling and may cause heart failure.
Explain that Byetta is very helpful to some people in controlling blood sugar so that it may be worth a try, but warn that it is probably not a good idea to keep taking it if it raises blood sugars which some people report it does.
Explain that if you improve your blood sugars by changing how you eat, and find you are seeing low blood sugars, you may need to ask your doctor to change your drug dosages,
especially if you are on Amaryl or Lantus.
Explain that insulin is the most powerful drug available to control blood sugar and that used right, it always works.
Unfortunately, it's often not used right. Stress that insulin shots don't hurt and are much less painful than blood sugar testing lancet sticks. If someone wants to demonstrate a painless shot, let them.
Briefly explain the difference between basal and bolus insulin. Explain why the usual Type 2 regimen, which is basal Lantus only, may not prevent dangerous blood sugar spikes after meals.
Suggest that people who cannot bring their blood sugars down to normal levels ask their doctors for a referral to a CDE or endocrinologist who can put them on a properly designed insulin regimen.
Open the discussion to let people comment on drugs they've tried and the results they've gotten. Let people who have questions about a drug ask them.
Homework: think what the most useful information you've gotten out of this cycle of meetings has been and jot it down. When the cycle starts back up, you can share this with the group.
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