One piece of news that came out of the 71st scientific American Diabetes Association conference this past week in San Diego wasn't scientific at all, but may be one of the most hopeful.
As reported in MedPageToday, unpaid, volunteer patients with diabetes took a 25-30 hour training program to help lead other patients to improve their lifestyle habits. And it was a roaring success. Blood glucose monitoring and physical activity increased, blood pressure and body mass index decreased, people ate more fruits and vegetables and stuck better to their medicine regimen.
"The most important resource in my practice is not my colleagues or other physicians, it is the patients we have in our center," said Garry Tobin, MD, associate professor of medicine at Washington University. "We have patients who have had diabetes 50 years and that experience has been able to make them successful in controlling their disease, and this gives them the opportunity to go back out into the community and be successful in helping other people."
Martin Abrahamson, MD, associate professor of medicine at the Joslin Clinic/Harvard Medical School, Boston said, "We are looking into doing similar programs among our patients."
In the US where there are 26 million people with diabetes and 80 million with pre-diabetes and only 15,000 diabetes educators and less and less endocrinologists coming out of med school every year, education will have to come from another source - successful patients.
If you don't know, there is a program called the A1C Champions, which I belong to. If you are a health care provider working with diabetes patients, check it out. It's free and I can tell you from personal experience - the power of patients hearing the same thing you've told them, but from a patient living successfully with diabetes, becomes a source of motivation and inspiration, and often moves patients to action they wouldn't otherwise take.
As usual at the Roche social media summit I had a lovely time gathering with others in this blogosphere and getting to know several people better. This time it was the lovely Wil du Bois and Bernard Farrell.
Wil is a man of all trades: type 1, diabetes educator in New Mexico, truly hearing the call to help those in need, author and advocate. He's also guest posting on DiabetesMine each Saturday.
Bernard is a type 1, technocrat, blogger now with DiabetesDaily.com and hails from the misty shores of Ireland. He said one of the most moving things we all heard at the summit. To paraphrase, it's hard to pick up and play with your child when you fear going low.
As usual, I have to hand it to Roche, maker of Accu-chek products, who still seem invested in this relationship with the social media community, and they see it as a two way street. Todd Siesky and Rob Muller do the heavy-lifting for the summit, and are maestros. And, if I'm not giving away any top secrets, Rob says not only does he like "yearning" music like me, but he produces it. I'm waiting for the proof!
We had brainstorming sessions about making social media even more impactful and were treated to discussions with the President of the International Diabetes Federation, Jean-Claude Mbanya, the President of JDRF, Jeffrey Brewer, and a presentation from CDE/psychologist Bill Polonsky of the Behavioral Diabetes Institute.
In brief: IDF is looking for greater partnership with American diabetes organizations and bloggers and to make their blue circle for World Diabetes Day the international symbol for diabetes awareness. I love the poster they presented that "O is for Outrage." We should be outraged so little attention is paid to solve this epidemic that will take down 1 in 2 people within another few decades. Mr. Brewer explained that while JDRF would no longer be referred to by what those letters originally stood for (Juvenile Diabetes Research Foundation) like "IBM" the letters alone will represent the company. This is largely due to the fact that they realize children with type 1 diabetes grow up and they want to be more inclusive. They're also investing more in management solutions along the way to a cure.
And Mr. Polonsky treated us to a presentation on "safe" and "unsafe" vacations managing our diabetes. Suffice to say if you notice the seasons change before you test your blood sugar you're on an unsafe vacation, my friend.
The other news is that across the road at the San Diego convention center, the American Diabetes Association's 71st Scientific Conference began just as we, housed at the Hard Rock Hotel, ended. Was fun to see so many diabetes faces roaming around the sidewalk.
I however did not stay for the ADA conference, so hop over to DiabetesMine where Amy Tenderich has been, and continues to, cover the conference. The conference ends today but she's collected so much good information she'll be writing about it for weeks to come.
A Swiss approach to healing
As I head out to San Diego for the annual Roche diabetes bloggers social summit, I want to leave you with a beautiful piece of film that looks at the patient-provider relationship from an entirely different angle. The dance floor.
Imagine gathering in a room with fellow patients and providers to dance. Imagine how much more open everyone immediately becomes, how much more trusting and real as bodies bump up against each other. Doctors were as surprised as patients at the joy and openness they felt and how everyone lost their label of patient or provider and become a fellow person. From there, and then outside the dance room, interaction comes from a much more real and connected place.
Imagine this quality of relationship with your care-giver. Once you do, you can imagine what this project discovered, that both care-giver and patient saw each other differently, the quality of the relationship changed and both were able to better nourish and advance the wellness process.
Benedetta Barabino created this project in Switzerland where she lives. Benedetta holds a PhD in biology and a creative and curious mind from which she is always working on out-of-the-box projects to advance the healing process.
I met Benedetta at the annual International Diabetes Federation World Congress conference almost two years ago where I was impressed by a similar project she was working on: having patients and providers work through blocks and barriers and advance healing through scripting and directing a play of their disease experience.
Crazy stuff? Not so much when you consider what we're doing isn't working so well and that creative expression - whether dance-therapy, art-therapy or acting - can open a door to healing we seldom expose ourselves to.
By the way, the dance classes continue in Switzerland. Enjoy the video.
A month ago I was asked to create a video about the value of having a personal support network living with diabetes.
I immediately reached out to tens of patients to ask whether they had a support network, who was in it and what it gave them.
I got answers like:
My sorority sister and college roommate has been my friend who has listened when everything about diabetes has been a "bitch" from diagnosis to 36 years later. She has consoled, encouraged me, kicked my butt when I needed it, laughed at crazy things, cried with me when it just got to be too much...all the time letting diabetes be the smallest rather than the biggest part of who I am.
My husband is my life line. Without him I might not be here to type!!!
My grandchildren, when they are with me are always reminding me to take my blood sugar or my shot. They like doing it for me and it is such a motivation for me because they are learning with me.
My entire family helps me - My wife reads the back label of all purchases at the grocery, my grown children drink “preppy micro-brew beer” but always have light beer in the house for me, during family celebrations my 87 year old mother always makes sure there is fruit for dessert.
From the moment of my diagnosis, my partner Dan has been there. He held my hand in the emergency room (I was in DKA), told me that he would help with all of the new eating habits, and has been there ever since. He helps with meal planning, keeping an eye on the barristas at Starbucks (um, she said no syrup), and always kindly saying "you seem low." He also never does the peeking at my meter - he respects my privacy but is always willing to help if I'm high or low.
What I know from the answers I received and my own supportive partner - who carries glucose tabs and sweeTarts wherever we go as back-up, points me toward interesting articles and is always ready to listen when I'm on the edge of burn out - is the rock bottom value of having people in your life who are there for you.
The video I wrote and recorded will actually be a series of three - 1) Introduces the value of having a personal support network and helps you assess who's in yours, as well as what you could use help doing; 2) 10 tips on how to communicate effectively to have family, friends and acquaintances join your support network; and 3) 10 tips how to leverage others' help and support to maintain healthy habits. I will keep you posted when and where they're available.
For now, however, I couldn't resist showcasing my excellent audience during my recording session. Truly, they were mesmerized; they didn't make a peep or move a muscle!
Last week Michelle Obama and the US Agriculture Department replaced the 20 year old food pyramid with a simple icon, “My Plate.”
My Plate is now the quintessential guide for healthy eating: a plate divided into quarters of slightly varying sizes representing how to create a healthy meal. It contains a larger quarter for vegetables, slightly smaller for grains, and slightly smaller for both fruits and protein. The hope is that it will help eaters avoid oversized portions and eat more nutritious meals.
Agriculture Secretary Tom Vilsack said after almost 20 years of preaching nutrition through a food pyramid that USDA officials now say was overly complex, obesity rates have skyrocketed. The new symbol is simple and gives diners an idea of what should be on their plates when they sit down at the dinner table.
In fact, it appears only one quarter of people who recognize the food pyramid ever used it. Further surveys show people are confused about what they should eat and most have no concept of portion sizes or balancing calories for weight control.
I heard about the “Plate Method” when Maudene Nelson, registered dietitian and diabetes educator at the Institute of Human Nutrition at Columbia University, reviewed a myth for my book, “50 Diabetes Myths That Can Ruin Your Life and the 50 Diabetes Truths That Can Save It”. In myth number 26, "There is one specific diabetic diet I should follow" Nelson called “the plate method” for creating healthful meals magic. It's in the Tips Box on page 142. She gave a little more specific instruction:
Fill half your plate with any variety of colorful veggies low in carbohydrates, such as asparagus, broccoli, Brussels sprouts, eggplant, carrots, or cauliflower. Fill one-quarter of your plate with carbohydrate-dense foods such as potatoes, rice, beans, corn, or legumes, and fill the remaining quarter with lean protein such as chicken, fish, lamb, pork, or beef. Meals made with the Plate Method naturally contain a moderate amount of carbohydrates, little fat and cholesterol, and a good amount of fiber.
Funny thing is with the exception of fruit on my plate, I use fruit for snacks, this is how I typically eat. Dinner is chicken or fish, beans and a green veggie.
Seems Mr. Vilsack should have come to me years ago!
This year's conference is in Orlando, July 5-10th, and you should consider coming if you have a child with diabetes or if you are an adult with type 1 diabetes. Registration is open for 11 more days - till June 17th.
While for many years Children with Diabetes has been, and continues to be, the "go-to" online resource for parents and youngsters. And, Friends for Life, the "go-to" annual conference for parents and their children - this year there is something new - adults with type 1 diabetes are invited. That's my group, and I can personally attest to the fact that as a type 1 adult I often feel invisible. But show up and you will feel as though everyone in the world has type 1 diabetes as you bump into pumpers and glucose testers at every turn - and that's in the hallway and the lecture halls, not merely the Exhibition Hall!
Friends for Life was the second diabetes conference I ever attended in 2007. It was amazing for me to walk into an environment of 2,500 people who were affected by type 1 diabetes.
This year I'm presenting two programs and one workshop on Thursday and Friday mornings: "Flourishing with Diabetes," "iDSM: inspired Diabetes Self-Management" and a Roche-sponsored session, "P is for Perfection and Knowing It's Not the Goal." All will give you tools to better manage your diabetes, and be happier in the process. Here's the impressive conference program schedule.
In some odd way I have always identified as a child with diabetes having gotten it at the peculiar age of 18; not yet an independently functioning adult, yet living away from home attending college and so bereft of everyday family support.
What stands out to me about the support for type 1 diabetes is it was begun by parents. Juvenile Diabetes Research Foundation (JDRF) was begun by parents who gathered to share their grief, questions and experiences about raising children with type 1 diabetes, and then began to advocate, and then created the most powerful type 1 research organization in the United States. JDRF remarkably dedicates $.85 cents of every $1 raised directly to research for a cure.
Children with Diabetes was started by a parent, Jeff Hitchcock, whose daughter Marissa got type 1 at 24 months. Searching in vain for information online about diabetes and children, frustration and purpose led him to start his own web site in 1995. In 2000 Laura Billetdeaux, whose son Sam got type 1 at eight years old, urged for an event that would bring families together so every year they pack their bags, as do thousands, and head to Orlando, Florida where Disney World is also on the conference agenda.
And each year Laura is at the helm, with staff and volunteers, organizing the conference. This year I happen to know personally, that she does it with the organizational skills of a drill sergeant and the warmth of someone who has just become your new best friend.
If you have a child with type 1 diabetes, you will find no other bonding experience and wealth of information like this. I know the same will be true for type 1 adults this year. Remember, you can register until June 17.
As Jeff likes to quote Elliot Joslin, "The person with diabetes who knows the most lives the longest." And, as Jeff and Laura prove every year, there is nothing like being in a place where you are understood and supported.
New book by Ginger Vieira
Two posts ago I wrote about Ginger Vieira who's making a very impressive footprint in the DOC (diabetes online community).
Today my interview with Ginger about her book, "Your Diabetes Science Experiment" is on the Huffington Post. Here's the link.
She's got a lot of great information about exercise and managing those nasty fluctuations in our blood sugar.