“Friends for Life” is no exaggeration, come join

Jeff Hitchcock, founder of Children with Diabetes

Unknown

“Friends for Life” is the annual conference given by the largest online resource for families with type 1 diabetes – Children with Diabetes

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 attendedin 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.

Upcoming speaking and travels

I’ve already blown it. I put the “Vacation Responder” setting on my outgoing emails last night and now everyone in my address book has gotten a message! Forgive me.

That said, this spot will go quiet for the next two weeks. 

Today I leave for Raleigh, North Carolina, weather permitting, to attend, and be the Saturday evening dinner speaker, at Diabetes Sisters’“Weekend for Women”. If you haven’t heard about it, check it out for next year. It’s just for us girls: 2 days of bonding, lectures geared toward diabetes and women, activities, great speakers and general diabetes care information. This year’s theme is “Celebrating our Strengths” and I’m delighted to be a part of it.

Then I’m off to Singapore where I’ll be addressing the endocrinology staff of Singapore University Hospital and medical students. Of course, I’m salivating  over the hot stone massage I hope my friend is booking. I had one there the last time I was in Singapore and I practically melted off the table. Of course that was after a ten-hour flight from Sydney. So, it promises to be doubly good after a 20-hour flight from NYC!

From Singapore I’m dropping down to Tokyo to visit friends. I lived there from 1986-1992 and I am always made to feel like an honorary guest when I return. And yes, for everyone who’s asked am I really going after all the destruction and earthquakes, I am. As I wrote on the Huffington Post, Tokyo is like a second home. Plus I have always figured when your number’s up, it’s up, and you can be anywhere.

I’d like to say I know exactly how to handle my insulin and blood sugar on these travels, but I’d like to say that; nothing could be further from the truth. I have no idea given the amount of time zones I’ll be crossing and jet lag and different foods I’ll be eating. And, I’ve never found any really good, clear information how to manage insulin while traveling. 

So I’ll use my usual method: test an annoying amount of times and keep adjusting till I seem to be on track.

So sayonara, be well and see you in a couple of weeks.

 

 

Diabetes Sisters’ “Weekend for Women”

UnknownDon’t miss out! April 29-May 1

Isn’t it time you gave yourself a pat on the back for all you do, more learning in a fun setting, and the joy of mixing with your ‘diabetes sisters?’ 

That’s exactly what’s waiting for you at the 2nd annual DiabetesSister’s (run by the powerful, gentle Brandy Barnes) “Weekend for Women”.

Friday evening April 29 to Sunday afternoon 1 PM, the conference takes place in Raleigh, North Carolina, a little hotbed of diabetes activity. 

The conference is open to gals-only (sorry guys) type 1 and type 2s and features sessions & workshops that deal with issues women care about: body image, pregnancy, spirit, strength, menopause, monitoring, cooking and moving,  relationships, sex and  self-acceptance. You’ll find quite an age range and people from around the country.

Gloria Loring, steamy song stylist from the ‘70’s, now mother of a child with diabetes and advocate for the Juvenile Diabetes Research Foundation and  Ann Albright, a Director at Center for Disease Control, are key speakers. 

I’ll be conducting a “flourishing with diabetes” session Saturday night after our ‘Celebration of Strength’ dinner and many other experts are on board.

So come for a run, some fun and what most of us enjoy most of all, mingling with those who walk in our heels.

Here’s the agenda.  $100 covers the entire cost of the conference including meals. Registration is open to the first 200 registrants, but don’t delay.  Last year registration closed six weeks early, so make your booking now. Then come up to me at the event and say hello. 

The passing of Elizabeth Edwards

Screen Shot 2015-02-07 at 5.11.49 PMKeynote speaker at AADE, August 2008

I’ve been saddened by the passing of Elizabeth Edwards this week. Maybe it’s because I actually saw her just two years ago, she was the key speaker at the American Association of Diabetes Educator’s conference. 

Maybe it’s because she dealt with so much hardship and carried it all with such aplomb and peace, or so it looked to us.

I wrote a piece about my experience of her on the Huffington Post. Here’s the full story.  

My TCOYD Providence weekend

It began with a cold that erupted the night before I was to Amtrak up to Providence, Rhode Island and speak at the Taking Control of Your Diabetes (TCOYD) conference. Don’t even ask about that night’s sleep, or lack thereof.

The next day disembarking at a little train station in Providence – of course I could only think of the popular TV show of the same name a few years ago – I checked into my hotel room, flopped on the bed half comatosed and toyed for the next two hours with venturing out to find dinner or ordering room service. I love exploring new places – and that includes peeking through restaurant windows and the chance encounter with someone at the bar, or a friendly waiter, so my gregarious nature won. It didn’t hurt that the concierge told me I was only four streets from Little Italy.

Meandering up the road I found Andino’s. A friendly host set up a special table for me. I didn’t mind that I was near the glass and metal door to the outdoor garden which banged every time a waiter or patron entered or left. No, I was relaxing to Frank Sinatra on the stereo, the aroma of real family cooking and in short order the place filled with boisterous locals so who could hear a door anyway?  I couldn’t finish the house speciality, veal Andino, and truly wished I could have shipped it home on ice. Alas, the true disappointment of travel, you can’t keep your leftovers. Ah, but you came to here about the conference.

300 people got their first taste of TCOYD and I learned from my informal polling that everyone was loving it – learning a lot and duly impressed with the presentations, experts and inspirational speakers. Just to name a few CDE/psychologist Bill Polonsky was there, Urban Miyares – who has overcome every diabetes complication and just keeps going like the Energizer Bunny – was our inspirational luncheon speaker and type 1 race car driver, Charlie Kimball, closed the day. Personally, I think Dr. Steven Edelman, founder of TCOYD and type 1 himself since the age of 15, is amazing. Both in his informational delivery spiked with humor, and his passion, vision and execution of bringing education directly to patients. 

There were 80 health care providers also in attendance for credits and my favorite workshop was the afternoon’s “Diabetes Police and Diabetes Criminals Working Together.” If you’ve heard the term “Diabetes Police” you know these are usually our loved ones who think they’re helping when wagging their finger in our face saying, “You can’t eat that!” I guess HCPs fall under the Diabetes Police banner at times too. The session was comprised of both patients and providers and we spewed forth our irritations with the other to clear the air and then sought solutions so that both patients and providers would take away some ideas from each other how to work better together. 

I was on the afternoon roster of workshops and delivered a program to help us all take more loving actions to better manage our diabetes. I also shared the secret mindset that most who are managing their diabetes successfully use. I also shared some great patient stories from my interviews and “loving lessons” from my book, “The ABC’s Of Loving Yourself With Diabetes.”I’m happy to report there were very few empty chairs and so many people told me afterward, “We all need to hear more of this!”

So, the weekend was for me just as rewarding as for those who attended. There’s little I enjoy more than touching someone else’s life (so selfish). I got a great dinner out of it and got to say “hi” to my fellow peer-mentors and infamous diabetes bloggers Kerri Sparling and Bernard Farrell. Boarding Amtrak to return home the following morning, truth be told, I was only bummed to discover there was no wifi aboard. When they call “All aboard!” doesn’t that include wifi? Otherwise it was a charmed weekend. 

Through conferences and health fairs held in cities across the nation, TCOYD annually brings thousands of people with diabetes, those at risk and their loved ones into contact with national and local medical professionals and others with expertise related to living with diabetes for a day of highly informative and motivational programs. 

Back from the AADE

AADE 8:2010 - 68

I know I’ve just returned from San Antonio because my body is craving guacamole and the smell of fresh mint in those juicy mojitos! Ah, but that’s not what you tuned in for, is it?

The annual diabetes educators conference was a hit with thousands of diabetes educators, nurses, physicians and pharmacists attending the 4 days of lectures, bonding, learning and renewing their credentials, and their spirit. The first evening at the poster event while all were mingling, I asked several CDEs what keeps them going. The answer was always the same, “Making a difference in someone’s life,” and that feeling was palpable.

The meeting kicked off with President, Deb Fillman’s welcome address.  I was extremely happy, and surprised, to hear her talk so emphatically about the need for change. The need for educators and the profession to look outside the box for new ways of working as more will be asked of them. 

Prevention is becoming a big topic in health care and for CDEs. The U.S. Senate’s passage of the health care reform bill late last year includes a provision to establish a National Diabetes Prevention Program. This means an expanded role for CDEs in the prevention of diabetes. Although god only knows how they will do more given the thousands of educators for millions of patients.

Fillman asked the audience to be more adventurous with change in their personal lives, taking on challenges and reaching for more fulfillment and success, as it will flow into being even better mentors and educators. Fillman also spotlighted the AADE’s new online tool, “My AADE Network” which helps members connect wherever they are and create an online community and remote learning.

Rear Admiral and former AssistantSurgeon General, Susan Blumenthal, was the keynote opening speaker. She pressed the sense of urgency upon us that we need to stand up to deal with the obesity epidemic now that’s taking a huge toll on America’s health and economy.  

The exhibition hall, always interesting to me, didn’t get as much traffic as usual and vendors didn’t know why except to suggest the short hours precluded many attendees from spending much time there if they were sitting in on continuous lectures. Also, the bookstore made a decision to only carry ADA publications and those of their speakers doing book signings. Other authors needed to show their own book(s) at their own booth, if they had one. 

I presented Saturday morning a behavioral program titled, “Beyond Motivational Interviewing: What Can Happen When You Catch Someone Doing Something Right.” There were about 100 attendees excited to be introduced to an entirely new mindset and model for working with diabetes patients: a mindset of “flourishing” with diabetes and a coaching model that enables health professionals to work as facilitators with patients, as appropriate, to:

1.  Explore the context of patients’ lives 

2. Play “Strengths Detective” to help patients recall and reconnect with capabilities they’ve used in the past

3. Collaboratively design mechanisms for sustaining healthy habits, causing positive behavior change faster and more sustainably than when only using the traditional model of “telling patients what to do.” 

This is exciting stuff that you’ll be hearing more about. I am currently putting the finishing touches on a curriculum to train health professionals on this mindset and model along with my two partners,Boudewijn Bertsch and Eileen Murphy.

A phenomenal play called, ‘Close to the Heart’ produced by Amylin was one of the conference’s highlights. With real actors in tow, it dramatized a patient getting a diagnosis of diabetes and how she deals with it, along with her relationships with her jealous best friend who is struggling with her diabetes, her supportive, yet pre-diabetic husband, and physician. Even I who have had diabetes for 38 years felt anew this woman’s confusion and pain. 

After the half hour performance Dr. Steven Edelman of TCOYD, Psychologist Bill Polonsky of BDI, heart surgeon Robert Chilton, Dr. Stephen Brunton and host Davida Kruger, certified nurse practitioner, answered questions in a panel discussion. Kudos to Amylin for going outside the box. It was a smash, and I know Amylin has plans to make short videos of it.

The general session closed with an in-your-face presentation by Dr. Michael Roizen, Chief Wellness Officer at Cleveland Clinic about the cost, both physical and economic, of our obesity and diabetes tsunami. Roizen has been an impressive change-agent spearheading the “Lifestyle 180 Program” at the Cleveland Clinic, which was first piloted with Clinic employees and now available to patients.  

One point Roizen made that still resonates is — food is an absolute, you can’t make a deal with food. What you eat is critical to your body and your health and either will or won’t turn on the genes for illness. For instance the sugar in ice cream will change the proteins in your body. That, he says, is a given. You can burn off the calories, but too many unhealthy foods and you’re creating inflammation which creates disease. 

Next year’s conference is in Las Vegas. I think my husband is already booking the hotel and buying his binoculars to look for Elvis.

Orlando, a hotbed of diabetes activity

 

It’s not just the temperature in Orlando that makes it a hotbed of diabetes activity these two weeks, but the enormity of activities going on. 

The American Diabetes Association’s (ADA) 70th annual scientific conference has just drawn to a close. Roche just held its second social summit and Children With Diabetes (CWD) begins today. 

Amy Tenderich over at DiabetesMine has been following and reporting on some of the ADA highlights, start here with opening day and see the next few posts, as is Kelly Close over at CloseConcerns, look down the left-hand column. 

I attended Roche’s social summit where they invited 37 type 1 and type 2 diabetes bloggers and broadcasters to a day of exchanging ideas about meter accuracy, best practices and an open dialog between us and representatives of  the American Diabetes Association and the American Association of Diabetes Educators

These conversations drew fire, well we are a feisty group, about how the patient seems all but lost amid their constituencies, but the ADA was extremely open about the need and desire to turn their battleship org around to be more representative and serving of patients’ needs, including type 1s – and create more transparency. They also obviously took this seriously sending six representatives including David Kendall, their Chief Scientific & Medical Officer. Kendall talked about the ADA’s “Stop Diabetes” campaign which is one of their first steps in being more patient-centric. 

Unfortunately, the conversation with the AADE was less successful. To be fair, many of us felt it was taking place with the wrong organizational person. She seemed unable to put her finger on our concerns – MAINLY the fact that diabetes educators are a dying breed while patients are an epidemic and need them. 

There are only 15,000 educators nationwide, relatively poorly paid and many suffer burn-out and leave the profession. On top of that, it’s hard to become an educator. There’s no direct route, and, a big catch-22. You need to have 1,000 hours working as a diabetes educator with patients before you can sit for an exam to become certified, but how do you get hired as an educator with no experience? After ricocheting these thoughts around we also voiced that we would like to see the organization advocate to improve the track to become an educator. An interesting point was also raised by my fellow bloggers – why not create a track where patient-experts can also be educators in some recognized fashion?  

In the end, we offered our assistance to help both organizations in any way we can. Specifically with the AADE to link their professional members to more social media. While that idea was warmly received and seen as a benefit to CDEs, allowing them to hook their patients up with us, I hope the AADE also realizes that CDEs can benefit tapping into social media to get inside patients’ heads, and hearts, and follow the trends and news we report on.  

I am impressed by Roche. With their genuineness, commitment and desire to have an open forum with we, who have an open channel to you. And, yes, while we can assume all this will benefit Roche’s sales and marketing, I believe they hope just as much that it will benefit us in getting products we need and want. 

At the 2009 social summit Roche put their toe in the water wanting to learn from us how to enter social media as a “good citizen.” This year’s meeting was heavily weighted on what they believed would be of value to us. Either way you slant it, a pharma better understanding the experience of living with diabetes and doing something with that knowledge can only benefit all concerned. 

To this end, Lisa Huse, Roche Director of Strategic Initiatives, opened the meeting with a recap of the four initiatives Roche has enacted based on what they heard from us last year:

1) “Keep it real” – display the real experience of diabetes, the real blood sugar numbers we get and teach patients what to do with them. I think I heard there’s actually a TV commercial where someone shows a 273 mg/dl on their meter, yea! Then again, I could have been dreaming.

2) Address costs of diabetes – through Accu-check there’s now a 15% prescription discount card and Patient Assistance Program.

3) Advocate for the diabetes community – through their Diabetes Care Project. A coalition of like-minded organizations improving care for those living with diabetes.

4) Help the diabetes community amplify its voice – clearly evident with our exchange with the ADA and AADE. 

Lisa also told us that during this past year of following our blogs and having her ear on the ground with us, she’s come to understand diabetes much more than her first 11 years with the company. As the meeting came to a close I wondered why more companies don’t spend more time, money and attention listening to, and getting to know, their end users. It can only be a win-win.

Personally, for us bloggers in our virtual world, it’s wonderful to get together, to shake a hand, play ping-pong (hope the table’s back next year), give and receive a hug and say to each other, as we hope we say to you, you are not alone

By the way, if you blow up the photo, and notice I’m wearing a lovely blue boot, it’s the result of a freakish accident. Don’t worry, five or so more weeks in my lovely footwear and all will be well. (Thus the hope the ping-pong table reappears next year.)

In full disclosure all expenses were paid for by Roche for this meeting.

A success for “Weekend for Women”

Screen Shot 2015-02-08 at 6.02.55 PM

Okay, I know, a bit of schmaltz with former Ms. America, but for a good cause. I just returned from the first“Weekend for Women” event put on by Diabetes Sisters and sponsored byTCOYD. Actually, the two events dovetailed this past weekend in Raleigh, North Carolina.

Diabetes Sisters was started just a few short years ago by Brandy Barnes, to bring women living with diabetes together and break the isolation so many of us feel. 

As Brandy opened the event Saturday evening she said she couldn’t believe how quickly she was seeing her dream come true as she looked out at the 100 faces staring back at her. 

For there we were: type 1s, type 2s pretty evenly divided, and all ages from early twenties to eighty. I talked with 80 year old Liza, who got type 2 diabetes three years ago and I only hope I have her vitality, and her looks, when I’m 80! Women also came from both the local area and as far away as California, Illinois, New York and Texas.

The event kicked off Saturday night with dinner, socializing and a pampering treatment: massage, nails, hair or make up. 

Sunday former Ms. America and diabetes advocate, Nicole Johnson, gave a truly inspiring talk. She developed type 1 diabetes at 19 and went on, against the wishes of many around her who thought it would be too much for her, to win the Ms. Virginia and then Ms. America title. 

While she is beautiful, her talk – warm, funny and personable – showed she is beautiful on the inside too. And while there was probably no other beauty contest winner in the audience, I think we could all identify with the limitations she talked about that others often put on us and that in mass we turn that around to show just how capable and remarkable each of us is.

The day continued with a host of informational lectures from keeping your heart healthy, feeding your body, mind and spirit and dealing with body image to having a healthy pregnancy and going through menopause. Sheri Colberg was our ending key note speaker and she shared from her book secrets of the longest living people with diabetes. 

As much as we came together to bond, celebrate and learn, it was also inspiring for me to see what Brandy had created bringing us together, and the uncompromising support she appears to have from her beloved type 3 husband and sister. 

There’s another “Weekend for Women” in the works for next year and it may even happen sooner than expected. If you’d like to participate you might want to stay current on the Diabetes Sisters web site.  

2,000 amazing book signings

All smiles

With little fanfare, my husband turned to me about two months ago and said, “Wouldn’t it be something if we gave away your books to the speakers and member nations who’ll be at the International Diabetes Conference this year? After I rolled my eyes I said laughingly, “It sure would.” And, I’m here to tell you it was!

1,000 copies of “50 Diabetes Myths That Can Ruin Your Life and the 50 Diabetes Truths That Can Save It” and 1,000 copies of “The ABCs of Loving Yourself with Diabetes” made their way to Montreal where they were on display last week in the Exhibition Hall of the IDF as my gift to all those who work to make life better for people with diabetes. The books were accompanied by thisletter that expresses my appreciation.

By noon the second day of the conference all the books had been handed out and are now heading back to libraries, clinics, hospitals and patients as far away as China, South Africa, the Philippines, Russia and most everywhere in between. The IDF has more than 200 member countries around the world.

For an author who rarely sees the impact of her work, chatting with those who surrounded me, seeing their delight in the colorful and unique pages of the ABC book, hearing them agree how we only talk about negative emotions in diabetes rather than strength, joy, appreciation and pride, was thrilling. Seeing their smiles glance over the playful cover of the 50 diabetes myths book that dispels a huge myth right on its cover was also a thrill.

So much so in fact that when the books were gone by 11:30 AM the second day I felt bereft. It had been so fulfilling to talk to so many who are working tirelessly every day in diabetes that I wished I had brought another 2,000 books! 

I did spend a fair amount of time at the many behavioral sessions offered at the conference where I heard confirmed the value of story-telling in helping patients in their healing process and that most behaviorists in the field are currently advocating motivational interviewing and patient-centric methodologies. I actually find both a step in the right direction but at the same time not quite the right step. Motivational interviewing is a directive approach where the HCP largely directs the conversation and intent rather than without prejudice openly exploring  the patient’s ideas for options, and as pointed out in one presentation, the HCP can bring his or her own prejudices to the process and a number of other blocks. Also, while most HCPs need to become more patient-aware, making the patient/doctor interaction patient-centered, too heavily weights the interaction on the shoulders of the patient and minimizes the HCP’s contribution. I am well aware of these approaches and working on a behavioral intervention that moves patients further and will be unique to the diabetes world.

Back to the conference, while it was a chore to leap out of bed early the first morning and walk a half hour in the cold to the conference center for the 8:30 AM session, it was the session that resonated most deeply with me and was most akin to the work I’m developing. 

It was given by Dr. Jean-Philippe Assal who spoke with the knowledge of a physician, the understanding of an educator and the eloquence and wisdom of someone who has evolved in his study of patient/physician interaction and human nature to understand that treating patients with diabetes is as much art as science.  

Dr. Assal also presented a remarkable video about gondoliers developing their skills to maneuver the waterways in Venice and comparing the development of those skills to how we develop the skills needed to live successfully with diabetes. An incredible metaphor and one that can only be recognized by those who look beyond the traditional care model.

The second day of the conference my husband and I found ourselves to our good fortune lunching with Dr. Assal, his wife, Tiziana, an education specialist, and their assistant, Benedetta Barabino, a biologist who is working in stage directing to help patients and physicians work through blocks and barriers. Needless to say it was a stimulating lunch centered around how the patient must be regarded as an equal expert to the provider as he/she is the expert on his/her life, and that working together the best outcomes can be achieved. 

One outcome that was immediately achieved over lunch is the husband and I have an invitation to visit the Assals at their Geneva home. Hmmm…I wonder how long it takes to get to Geneva from Brooklyn?

20th World Diabetes Congress

Just landed home from two weeks in the U.K. where I’m collaborating with an expert in behavioral intervention to help patients better manage diabetes. This promises to be exciting new work in the coming months and something I’ll be writing more about. 

Off again tomorrow morning to theInternational Diabetes Federationconference taking place this year in Montreal. The conference brings together the top researchers in diabetes from around the world. It begins this Sunday, the 18th and finishes on the 22nd. I’ve never been to the IDF conference so it promises to be enlightening. 

If you happen to be there check out the display area where my books will be available. 

Now that I’m still on U.K. time which means I’ve been up forever and the room is beginning to spin, I’m going to say come back next week when my travels will be limited to my walk around the park and shlepping groceries home from the local market