Letter to the Diabetes Research Institute

I attended a 5 day intensive course for diabetics called “mastering your diabetes” put on by the Diabetes Research Institute(DRI) in Miami.  I recently sent them a letter.  Here it is……………………

I want to first thank you for developing and presenting the best training for a Type 1 Diabetic that I have experienced in my 32 years of having the disease.  As you know, when I was diagnosed in 1976 at the age of 14 the treatment protocol was much different.  I peed on a strip to check how much sugar I was “spilling” and I attempted to balance my blood sugars with one shot a day of long acting insulin.  Even though my father was a doctor and I had relatively good doctors along the way, life took its twists and turns and keeping up with the advances  in treatment was difficult and sometimes financially impossible.   Also, as long as nothing seems to be going wrong, the tendency is to keep doing the same thing even though the daily blood sugar results are not acceptable.

About 8 years ago I made a decision to address my diabetes with a different attitude.  My level of “mastery” in being able to balance blood sugars kept increasing.  About 3 years ago I went on the insulin pump and I heve achieved an even higher level of mastery.  I have been able to achieve A1C results under 7.0 for three years now.   I became a certified yoga teacher.  I had been practicing yoga for several years and wanted to pursue it deeper and learn the foundational components.  I was using yoga as a metaphor for the balancing act we, as diabetics, must engage in on a daily basis.  I also experienced some profound meditation practices.  I have found meditation to be the cornerstone for the skill that rates paramount as a diabetic; balance.

My career has been primarily centered around training and systems and procedures development and implementation.  I have put down in writing some of my ideas about Diabetes Management in a system perspepcitve.  I have identified an obejective, brainstormed the individual functions and components, put these functions and componenets together to create a system and procedures platform, oultined different implemention strategies and action steps and have constructed a way to measure results.  As a trainer I have learned that you can basically train three things.  You can impart knowledge, you can develop skillls and you can introduce and sell the most effective thought context or attitude that yields the best results.  It is easiest and the least costly to impart knowledge.  It is a little more difficult to work on skills and it is most difficult to enhance attitude.  I have always taken this into consideration when developing training programs and have paid particular attention to attitude in writing about Diabetes.

What we are really doing as diabetics is manually implementing a critical bodily system that has failed.  Therefore, a systems approach is beneficial.  This system that has failed is the system that converts energy for the body.  It is destroyed through an immune system malfunction and there is very little hope for it self correcting.  So, we must get energy into the cells of the body while at the same time walking a high wire act of trying to balance blood sugars within an acceptable range.  My experience is that this is a very difficult act to perform.  And perform we must or we face consequences of not feeling well, going too low, falling into coma, acquirng long term complications, etc.

In my thinking about, documenting and writing about Diabetes I have realized that we are not all at the same place.  So, in my attempts to develop a training approach I have hypothesised that a different approach might be appropriate for people based on where they are at.  In doing this I also realized that the training could be structured in such a way so as incentivize progress or desired outcomes.  Let me explain.  To achieve consistent A1C’s below 7.0 with few lows requires a system and therefore a speific training that is different than achieving A1C’s below 8.5.  It took me 28 years to figure out how to get below 7.0.  I had A1C’s as high as 9.  I know what I was doing then and I know what I am doing now.  I envision a training process that first works on getting below 8 and then below. 7.0.  I am also exploring what it takes to get below 6.5 on a consistent basis.  Perhaps incentives can be put in place for trainees progessing from one training to the next.

There are so many components to this disease and the system that must be put in place, implemented and mastered.  I have considered most of them.  But I will mention just a few that I consider most important.

1. Insulin Delivery:  This is a critical component, of course.  Each component is surrounded by knowledge, adoption and mastery of skill(s) and effective attitude.  My experience has showed me that the insulin pump is the best approach.  I now understand the pump, I have been able to become skillful at using it.  But most important I have been able to surround insulin delivery with an attitude that has made it possible for me to achieve the results that I have.  I will say this much at this time.  When I was diagnosed some 32 years ago I was told…..”take your insulin and watch what you eat and you can live a normal and healthy life.”  The shock of getting diabetes is immense.  All one wants to do is get back to “normal.”  I wanted to be normal.  Being normal, not different and accepted is a primary motivator for any adolescent.  This desire extended into my adult years as well.  I was not enthusiastic to tell other people about my disease.  Current diabetes education, with the exception of courses like yours, is a brief visit to the doctors office.  Usually a quick review of lab results. a short look at inadequate charts and perhaps an adjustment of insulin dosage.  This will not yield A1C’s below 7.  No, normal is out. Normal should not be the objective.  Understanding the system and being trained in how to work the system is critical.

2. Overall General Health and Exercise:  For me it is all about the workout.  I have explored alternative health approaches including, acupuncture, cranial sacral therapy, massage, yoga, meditation, chineese herbs, running, walking, weight lifting and vitamin/supplement therapy.  In my opinion, the Type 1 diabetic must commit him/herself to achieving optimal health and well being along with performing the balancing act of blood sugar control.  I have used the metaphor of a car in my writings.  I see the food we eat as the fuel.  I see the insulin as the accelerator.  I see overall health as the type and condition of the car.  It is my priority on a daily basis to work my body in a way that I am like a new and well conditioned Porsche sports car.  As such I respond best to premium fuel and my accelerator is tight and responsive as opposed to an old truck that is a gas guzzler and which has a loose, unresponsive accelerator.

3. Checking Blood Sugars:  I test an average of 10 times per day .  I get 300 strips a month from my pharmacy.  I have used the Dexcom CGM system.  I would wear it all the time except that I have an issue with a second port.  I am physically active and perhaps my skin is sensitive.  The second port is a problem for me.  I wish they could put it all in one port.  That aside, a system is made up of essentially 2 things.  First, what needs to be accounted for.  Second, feedback.  The blood results are feedback.  The feedback is used to make adjustments.  I cannot get below 7.0 without checking 10 times per day or wearing a CGM.  Not possible.  Not enough information.

4. Relationships with others:  The people around us and who love and care for us are affected by our diabetes.  As we become masters at balancing on the high wire they are able to relax.  They are like spotters for us.  They are there when we fall and they are always worrying about us.  I see this most in parents of children with diabetes.  If they see us achieving desired results our relationships become better.  It is important for us to realize the kind of co-dependant assoications we have cultivated and take responsibility for them and transform them.  I see this to be a very important aspect of the training.

Again, thank you for your course.  You imparted a lot of knowledge, introduced critical skills and whether consciously or not you enhanced all of our attitudes.  I think this was done mostly by your demonstration of patience, perserverance and compassion for us as trainees.

I believe that it is my purpose to help others with this disease.  With all that I have been through and all they I have put myself through I consider myself lucky and blessed to now be in a position to impart my experience and my understanding of dealing with this disease.  It is a complex disease and it is a difficult task.   But there are breakthrough opportunities with this disease that can transform an individual from hopelessness to victory.


A Letter to My Insulin Pump Trainer

As you know, I have been doing a lot of writing and research about my own relationship to Type 1 Diabetes.  I have studied and practiced yoga and meditation in an attempt to find a metaphor for the balancing act we must engage in 24/7.  I have explored alternative “body work” like acupuncturecranial sacral therapyChinese herbs, supplements, and other modalities.  The results I have realized especially over the last 3 years have been significant and profound.  My A1C results have been all under 7.0 and when I am really on it I am below 6.5.  Beyond the numbers I have achieved a paradigm shift in my degree of certainty I am able to apply to my life.
I know that my purpose is to help others with the disease and those affected by it which is everybody.  When I went on the pump and you trained me I was ready.  I had 28 years under my belt and I had already been on track to gain better control (balance) over things.
Here are my initial thoughts……..

As a trainer I have learned a few things:

You can basically train 3 things.  You can impart knowledge.  You can introduce and develop skills.  And you can impart and enhance the thought context or attitude which maximizes the ability to “get the job done.”  Most training is focused on knowledge and skill development.  Current diabetes and pump education training is as well.  Most trainings deal with the different attitudes of the trainees as best as can be dealt with and then there is hope that the knowledge and skills stick.  In the development of my training protocols I have made the assumption that attitude is at least 80% of the battle.  I have therefore ingrained throughout the training process tasks and exercises that challenge current attitudes and mold desirable ones.  One of the most important things I have learned in my 32 years in dealing with this disease is that my attitude is the most critical component.  The challenge lies in theAcceptance of the situation at hand.  And it is a persistent and sometimes insidious situation that Type 1 Diabetes presents.  Therefore, I have thought about and written about the optimal attitude for training for this disease.  For example, going on the insulin pump is a change in the insulin delivery function of a system that includes many other functions.  Perhaps going on the Animas pump is an opportunity to present a training that is a whole system training.  It is really the only way it will work for most people, I believe.  Some will get it.  You are probably getting the most motivated diabetics with the best adjusted attitudes.

Acquiring Diabetes at the age of 14 vectored in a lot of fears, insecurities, worry, adjustment, relationship and social challenges.  All of these things combined with the constant presence of the disease and its ups and downs naturally has an affect on the way one thinks about things and does things.  Over the past 7 years and especially the last three I have gone inward to push against the negative and find the positive.  I have realized a level of acceptance that I never thought I could achieve.  And that has yielded a higher level of responsibility – The ability to respond to the task at hand.  We, as type 1 diabetics are always walking on a high wire, trying to stay in a range.  We will fall out of the range often.  The pump is one of the best tools in assisting us in our balancing act.  But it is only one tool.  Persistence, Patience, Faith, Courage, Restriction, Compassion make up a few of the foundational pillars of being able to stay up on the wire
and perhaps, more importantly, being able to get back up when falling off.  These attributes can be ingrained throughout the Animas training program to both their clients and extending out to their caregivers.  These are the ingredients that make up the optimal attitude for a type 1 diabetic.  It is a bold approach but when one considers the present state of diabetes education and training it is a badly needed approach that, in my opinion, will increase sales dramatically.  And when you increase sales you are going to be lowering the A1C of the Type 1 Diabetic population, reducing complications, easing the worry and concern of parents, siblings and friends, and enhancing the performance of primary care physicians and endocronologists.  That is a noble mission with very cool results.