Monthly Archives: November 2012

DAD in the News

I came across this story about a 10 year old with a diabetic alert dog who was denied access to her school in Oregon.

http://www.katu.com/news/local/School-says-girl-cant-bring-diabetes-service-dog-to-class-179194181.html?tab=video&c=y

The story focuses on the fact that even though public access is a protected civil right under the Americans with Disabilities Act, this particular school is exempt because it is a religious institution. It is an unfortunate story but that’s the way the law is currently written whether you agree with it or not (for the record I disagree).

The video, however, is worth watching. The dog is a close match to what Mya will look and behave like. The reporter does a good job explaining diabetic alert dogs in layman terms as well as the discrimination the girl has faced and will continue to face.

A Doggone Update

In the posts titled How I Got Here Parts 1 & 2 I described the six month journey of discovery from the time I first considered getting a diabetic alert dog (DAD) through the recent decision and commitment to purchase a trained dog. Here is where things stand as we approach the end of 2012.

Mom

On August 31st at Duckhill Kennels in Tennessee, Torngat Island Dream, a British Labrador Retriever, had a litter of eight pups: four males and four females. The sire was Duckhill Boomer.

British Labs differ slightly from their American cousins. According to this blogAn English Lab Retriever is generally more solidly built and more docile, while an American lab is more energetic and may be a better hunting animal.

Dad

The puppies are enrolled in Duckhill’s Puppy Headstart program which teaches them self control, obedience, desensitization, and social skills. Check out the informative and adorable video at the end of this post that describes the program.

Sometime towards the end of December or early January, my trainer, Scott Smith, will assess and choose the best of the four females to be named Mya (pronounced Maya) and bring her to his facility in Hampton Roads, Virginia. Over the next 14 weeks Scott will enhance and reinforce Mya’s obedience skills as well as train her to detect and alert to the scent produced by humans in a state of hypoglycemia or low blood sugar. He may also teach her to alert to hyperglycemia (high blood sugar). Stay tuned for a future blog post in which I interview Scott about his background, his training methods, and his experience placing diabetic alert dogs with children and adults around the world.

If all goes according to plan, Scott will complete training by March at which point I will drive to Virginia and spend a few days bonding and learning to live with a service dog. Mya will be about six months old and her training will be incomplete. She will have a solid foundation but it will be up to me to continue to train her and build her skills as she matures.

I will drive Mya home to what will undoubtedly be four excited boys, two terrified cats, and one tentative but encouraging spouse. Then the real fun will begin as I learn to integrate Mya into every aspect of my life. As a trained service dog she is able to accompany me pretty much everywhere including stores, restaurants, etc. I’m currently in a battle with my employer over the right to bring her to work with me but the law is on my side and I’m hopeful they will just do the right thing. I’ll be documenting my legal battle with them in an upcoming post.

 

Know your HbA1c / Pre-Diabetes

This post is really for my non-diabetic readers. If you are diabetic you are all too familiar with your HbA1c, or A1C as we commonly abbreviate it.

<DISCLAIMER>I am not a doctor and you would be a fool to make medical decisions based upon anything you read online including in this blog. 

When people find out I’m diabetic they typically have lots of questions about the disease. One of the questions/comments I get a lot goes something like this “my doctor says I’m pre-diabetic but I don’t know what that means or what I’m supposed to do with that information.”

Odds are they are hearing this from their primary-care physician (PCP) who is looking at a fasting glucose result which is where the problem starts. The problem is twofold. Part one is that – with all due respect to generalists, internists, and family-practitioners – they typically don’t know much about diabetes besides what they were taught in med-school. I don’t mean to sound harsh but the misinformation I’ve heard from my own PCP and what I hear other people’s PCPs tell them is frightening. In my experience their information is either out of date or too generalized to give them an informed understanding about diagnosis and treatment. So step one if you’ve been told you are pre-diabetic: get yourself to a specialist, aka an endocrinologist.

Step two: demand an HbA1c blood test and ask for the specific result, not just the doctor’s interpretation. The fasting glucose test, in my opinion, is fine for detecting the possibility of diabetes but is useless for diagnosis and treatment. The fasting glucose test measures your stable blood glucose (bg) at one point in time, typically first thing in the morning. The problem is that for some people this can be perfectly normal even though they are experiencing dangerously high spikes in glucose after meals and, as it turns out, it is the spikes that do most of the damage. The HbA1c test uses a clever trick to assess a 3-month average of your glycemic profile from a single blood sample and it is, in my opinion, the gold standard by which diabetes should be diagnosed and monitored.

But don’t just take my word for it, take a look at this study, or if you prefer, the less technical summary. Here’s the punchline:

Glycated hemoglobin (HbA1c) outperformed blood glucose as a predictor of cardiovascular disease (CVD) and all-cause mortality and had similar predictive accuracy for diabetes, data from a large cohort study showed.

Ok, so you’ve got your HbA1c. What does it mean and what exactly is pre-diabetes? Officially, an A1C below 5.7% is considered normal, 5.7-6.4% is prediabetes, and 6.5% and above is diabetes. So if you are in the high-fives (ha, down low, too slow!) or low sixes does that mean you are fine and have nothing to worry about? Sadly not.

The fact of the matter is that any A1C above normal (5.7) increases your risk of diabetes related complications. Take a gander at this chart from the aforementioned study (fear not the statistics and technical terms – I’ll explain it all shortly):

These four charts describe the risk of various hazards associated with levels of glycated hemoglobin – the thing that is measured by the HbA1c test. Charts B through D are the really interesting ones that show, respectively, the risk of coronary heart disease, stroke, and death. In each case the increase in risk starts pretty early – in the mid 5’s – and climbs appreciably well before reaching 6.0.

This excellent article on diabetes and eye disease has this to say about HbA1c:

 

So what does this all mean? It means that pre-diabetes is simply the short range where the risk curve starts to climb. It does not mean that being pre-diabetic is nothing to worry about and can be safely ignored.

Know your HbA1c.
See an endocrinologist.
Let’s be safe out there.

The Joy of Lows

Meter showing 42 mg/dlI was woken this morning by the telltale feeling of dread that typically accompanies my middle-of-the-night lows, but not the usual cold sweats. The meter tells the tale though – 42 mg/dl. Oh, and look at that nightly average of 55. That’s skewed a little by the fact that this is my next-to-the-bed meter that typically only gets used before I go to bed, in the morning when I wake up, and in the middle of the night if I wake up suspecting I’m low. Meters are so cheap these days that I keep one within arms reach at all times – I’ve got at least 6 meter stashes including one in each car, one in the kitchen, one in my backpack, one at work, etc. But I digress.

Unless you’ve experienced severe hypoglycemia you don’t know what hunger is. In an attempt to save itself, the body produces a voracious desire to consume anything that looks remotely edible. As much as I hate the high risk and damage to brain cells that these episodes impart, I’ve learned to find their silver lining.

This is the one time I can eat whatever I want without counting carbs or figuring out how much insulin I’ll need to cover it. It’s a thrilling moment when I open the pantry and let my eyes gaze upon the bounty before me, knowing I can devour whatever I like without guilt. Indeed, thanks to the fogbank that hypoglycemia puts me in I often stand there, gently swaying in the mental breeze, while suffering a long moment of stupefying indecision as I let my eyes taste each bag or box of starch or sweetness.

This time I started off the feast with a big glass of concord grape juice. This is officially “my” bottle in the house because I love the stuff and miss it dearly from my childhood. Needless to say I usually can’t drink anything with sugar so this is off limits except when I need a quick boost of glucose. Trader Joes Dark Chocolate Covered Pretzels provide the main course which mixes nicely with the grape juice and guarantees I’ll wake up with an interesting flavor in my mouth in the morning. I finish it off with a healthy bite of Jello which thoroughly fails to satisfy.

Ok, disaster averted. Now back to bed where I’ll lie awake for an hour waiting for the adrenalin to burn off.

Well THERE’S your problem!

Most mornings my meter greets me with a comforting number in the 90s, occasionally breaking 100 but not much more. So I was quite disheartened the other day to see 136 staring back at me. Hmmm… I did have a small bowl of ice cream while watching Major Crimes with the family (verdict: not as good as The Closer but worth watching) and, although I’m usually pretty good at bolusing for ice cream thanks to the delayed-absorbtion impact of all that fat, perhaps I misunderestimated. Still – 136 was fairly disturbing and gave me a hint it was going to be one of “those” days.

I ate my usual breakfast and took my usual bolus and SWAGged a correction for the overage. I fully expected an hour later to be back in range. But no. 185. WHAT THE FORK! Ok, now I was pissed. Time for some serious rage-bolus action.

This pattern repeated itself throughout the day. Even though I reduced my carb intake and did 40 minutes on the bike I could not seem to get my number under control. When I rang the bell after dinner at 220 even though I took an absurd quantity of insulin I decided this was no normal some-days-your-glucose-just-won’t-behave kind of day.

Pump settings normal? Check. Big air gaps in the tubing? Nope. There was only one thing left to check: the infusion site. It “felt” fine laying flatly against my skin. I had no choice but to pull it, violating my obsession with stretching how long I can go between site changes.

I could almost hear hear Jamie saying “well there’s your problem” through his walrus-styled mustache. The cannula was kinked back on itself and clearly never punctured the skin. So where was all that insulin going that I had been shooting all day? I’ll never know.

How I Got Here, Part 2

In part one I gave I gave a not-so-brief summary of my diabetes diagnosis, struggles with hypoglycemia, and how the idea of a diabetic alert dog entered my consciousness. This post will pick up where that one left off and explore how I went from thinking about a DAD to eventually committing to buying one from a trainer.

Having gotten the green light to explore a DAD I started educating myself about them and service dogs in general. DADs are a relatively new phenomenon and there are few good authoritative sources. There have been a number of high-profile stories in the media about how these dogs are helping children and adults and this has led to some misleading and potentially harmful misconceptions; some of which are being spread by what are, in my opinion, unscrupulous trainers looking to make an easy buck.

I spent hours reading websites and forums and having in depth discussions with trainers about their programs. As I expected this turned out to be the easy part of the process. I’m an engineer so I’m very analytical by nature and after long consideration was able to make some important decisions, the first of which was that I would buy a trained dog rather than train my own. While I liked the idea of training a puppy of my choosing which would save considerable money I decided that it’s a bit like home dentistry – it’s not terribly complicated but the stakes are high. Considering the role a dog would come to play in my life and the high level of obedience and focus I feel is necessary this decision ended up making itself.

The second important milestone was narrowing the list of candidate trainers to two: Scott Smith  or Mary McKnight at Service Dog Academy. Both Scott and Mary exude a dedication to their craft and a deep understanding of how dogs learn garnered from years of training. In the end I settled with Scott primarily because he was geographically closer and seemed to always have a free minute to answer questions which I deemed critical for post-sale support which I will surely need.

The most difficult barrier I had to get through ended up being in my head. Diabetes is one of many invisible disabilities. Besides the insulin pump clipped to my belt, you would never know I have a chronic disease that threatens my long and short term health. Being accompanied by a service dog wearing a vest that reads “Service dog. Do not pet” is a bit like waving a neon sign over your head saying, “I have something wrong with me and I can’t cope on my own.” Some people will stare, some will politely ask questions, some will ask not so politely and others will try to stop me from entering their business with my “pet.” (Service dogs are allowed to accompany their trainers into public establishments under the Americans with Disabilities Act.)

Thus, the decision to get a DAD is also a decision to become an advocate for diabetes and service dogs in general, and an active defender of my rights and the rights of other service dog teams. My anonymity and strong preference toward privacy will be threatened on a daily basis. This was a pretty big pill to swallow and while I’ve made peace with the idea I’m still pretty terrified at the thought of it.

On top of all this I realized that having a dog with me 24/7 is a bit like caring for an infant. Everything takes much longer and you have to haul around lots of extra gear. Getting in and out of the car takes longer. I need to think about toileting schedules all day. A dog requires lots of exercise so I’d be taking walks at least three times a day with lots of energetic playtime in between. Dogs need brushing, and petting, and cuddling… wait this is starting to not sound so bad.

The truth is that for all the challenges I will face having a new constant companion, there will be many benefits that are hard to quantify but can make a profound difference in quality of life. One day I came across this post on TuDiabetes. Terry’s eloquent words resonated within me and helped clear the fog that mired my decision. Don’t misunderstand: I know that life with a DAD will not be all rainbows and unicorns. There will be times when I will question my decision and there will be times when I want to give up. But I also believe that a DAD will help reduce the risk I face from hypoglycemia and otherwise improve my life in ways I can’t predict.

And that’s how I got here.

How I Got Here, Part 1

The decision to get a diabetes alert dog has been long and winding. This is how I got here.

Like many MODY PWDs I was diagnosed later in life – in my case when I turned 40. Circumstantial evidence suggests that I was diabetic for many years before this but it had simply gone undetected. After diagnosis I spent 2 years trying to find an endocrinologist who understood MODY and to find a course of treatment that would work. In my case that meant insulin. I used a pen for a month and, being a gadget-loving kind of guy, quickly switched to a pump. I’ve been a pump-lovin-fool for five years and a 24×7 CGMS user for four years having spent a year on the Medtronic CGMS (useless IMHO) and then three on my trusty Dexcom (priceless). I recently switched from a Minimed pump to the Animas Ping in anticipation of their integration with Dexcom and its promise to reduce my pocket inventory significantly.

There are a number of factors that put me at high risk for heart disease and that scares the bejeesus out of me. My dad had a heart attack at the ripe old age of 46 (I’m now 47). He survived but I swore I would do whatever it took to avoid that fate. So I’ve always been very aggressive with managing my health and diabetes is no exception. Once I learned to control my glucose with insulin I set a goal of maintaining as close to a normal A1C as possible – specifically I set my sights on the five club.

This has not been a trivial task and I have not always been successful, having recently ballooned up to 6.4 before redoubling my efforts and getting it back down to a 5.9. When I originally told my endo about this goal he was supportive but cautioned me that I was going to experience lots of hypos – they were simply unavoidable. Needless to say he was right.

Hypoglycemia is especially troublesome for me because I have hypoglycemia unawareness – I don’t usually feel any symptoms until I’m in the low 40s. I haven’t yet had a seizure or passed out but I’ve certainly come close. These events terrify me. As a dad of four wonderful boys I have a lot to lose.

My CGMS has been very helpful and I expect this technology to continue to improve. But it isn’t good enough. It often sounds the alarm much too late and false alarms so frequently that I’ve learned to ignore it more often than not. In my opinion CGMS is a fine tool for visualizing trends and understanding how my body responds to various foods. It is also crucial for monitoring my overnight glucose so I can fine tune my basal schedule. However it is a too blunt an instrument for detecting the sudden spikes and crashes that make this disease so much fun to live with day after day after day.

Now, some people who know me well might suggest that I planted the idea of a diabetic alert dog in my wife’s brain while she slept. You see I have always loved dogs and had a spectacular German Shepherd who was my best buddy growing up. As an adult I’ve always wanted a dog, but my wife… well not so much. I’ve tried numerous times over the years to convince her but it was no use. So I’ve learned to live vicariously through other people’s dogs and settle for our two lovable cat’s Emily and Finnoglio (the ‘g’ is silent).

Finn and Emily. Emily is the calico. They are siblings.

The truth is that as scary as my hypoglycemic episodes are for me, that fear is nothing compared to what my lovely wife, Cathy, experiences. And rightly so – for she feels powerless to help me deal with these lightning strikes waiting to happen and the consequences for her and our children are no laughing matter. It has reached the point where I sometimes don’t tell her about my really bad lows for fear of worrying her. Sometimes she finds out anyways and naturally gets angry because I’m not being truthful with her, the net result of which is her frequently asking me if I’ve checked my blood or, if I’m behaving strangely (which I do quite a lot regardless of my blood glucose) if I am low. (I hate the verb ‘to nag’ because it has such negative connotations and allows no room for the perfectly reasonable and loving motives a person might have in exemplifying it. So I won’t say she nags. It is not an ideal situation no matter what you call it.)

And so it was with great surprise one day that Cathy asked me if I would consider getting a diabetic alert dog. We had recently learned of this phenomenon from an article we read somewhere but I never considered it seriously. At first I thought it was a cruel joke but she was entirely serious and had given it careful thought. Her motivations were twofold. She obviously liked the idea of a safety net that an alert dog could provide. She also liked the idea of having someone else nag (oops, I said it!) me to check my blood, knowing that it would be pretty hard for me to get mad at a lovable, furry face no matter how persistently he or she alerts.

Over the next several months we talked about the idea at length. I did a lot of soul searching and thinking through the practicalities of how such a change would impact my life. All this and more in How I Got Here, Part 2!

 

 

First post

Wow. Sure is quiet in here. All this empty space – it seems to echo. Let’s see if we can add some color to this blank slate.

This blog will wander among my various interests, excursions, and ambitions (see About Me for details) but will have a central theme of my life as a PWD (person with diabetes) and my journey through life with a hypo alert dog.

Hypo alert dogs, also called diabetic alert dogs (DADs), are service dogs that have been trained to detect low blood sugar and alert their owner early enough that they have time to intervene and hopefully avoid a precipitous plunge. As I start this blog I have committed to a trainer to purchase a trained dog and if everything goes right she will become my constant companion five months from now. The process that brought me to this decision has been long and winding and will be the subject of a future post.

Ok. That seems like enough for a first post. Up next: How I got here.