Growing Old from the Inside Out

I’m not making any great leaps of the imagination in suggesting that sometimes dealing with diabetes makes me feel a bit like this lady:

We’ve all worn that ragged mask now and again, for any number of valid reasons. Blood Sugar. Work. Spouse. Family. Finances. Did I say blood sugar already? Stress is a part of life, especially so when you throw something as routinely uncooperative as diabetes into the fray. Suddenly, a weeping Picasso doesn’t look so bad. At least she’s not lost her mind completely and had the wherewithal to tie a pretty bow in her hair.

No End in Sight

There’s nothing I’ve seen to suggest that the battle for a worry-free life is about to end anytime soon. A recent report from the U.S. Centers for Disease Control and Prevention suggests that about half of all Americans will suffer from some form of mental distress at some point in their life, and if a 2010 list of the top therapeutic classes by sale of prescription drugs is any indication, I’d say they’re on to something. Psychotics and antidepressants take 2 of the top 10.

Like any other health issue, stress can be a result of, or at least aggravated by lifestyle. Positive relationships, good nutrition, plenty of sleep, and exercise can alleviate some or all of the symptoms (sadly not necessarily the source) associated with pushing ourselves past our limits. But what about when the worry is lasting and unavoidable and no amount of a “taking better care of ourselves” will make the dreaded feeling go away?

Wait, it get’s worse, sorta

I’ve been thinking about this because I’ve been missing what I’d hoped would have become an annual treat for me, a weekend away. After my fly fishing trip to the mountains, which came just a few months after Lia’s diagnosis, my mind felt refreshed, rejuvenated, and I was happy. I felt the same way without leaving the house when seven months later Franca and I underwent a nutritional liquid cleanse, at the conclusion of which we both would’ve sworn our bodies had grown younger. As it turns out, that could very well have been the case.

Bring in the Telomeres

In a study conducted in 2004, two scientists from the Department of Psychiatry at the University of California-San Francisco, Elizabeth Blackburn and Elissa Epel, showed that chronic stress may actually make us grow older faster. Their work specifically targeted mothers caring for their chronically ill children and the conclusion they drew was that the chronic stress these women were feeling was actually shaving years of their lives. Big years. We’re talking a shorter lifespan by 9-17 years!

Here’s a short video explaining the telomere.

And also a wonderful blog post explaining it better than I ever could.

Is There Any Good News?

Well, yes, as a matter of fact there is. Exercise, nutrition, lifestyle, all those things I mentioned before, appear to be the answer to lengthening our telomeres and reverse–yes reverse–the aging process. For those of us treating and caring for a loved one with diabetes, we might have to work a bit harder, but the opportunity is there. I just need to stop wishing for that fishing trip and get out there and make it happen.

 

Science Envy

I love science, I always have. I can remember as a little kid sitting glued to the television watching episodes of Nova or Carl Sagan’s, Cosmos, or reading works by Asimov, Bradbury, Clarke, and being enthralled with the notion of exploration, discovery, and observation. Then, anything was possible.

 

 

Like so many others though, as I got older I drifted away from science, or rather, what the playwright George Bernard Shaw once fondly wrote is the venture that “never solves a problem without creating ten more.” Sadly, perhaps that’s the commentary of adulthood, the limits of time, space and attention subjecting the study of science to the status of just one more mind-boggling, homework-laden course the kids were taking in school. And the years went by.

Strangely enough, in the months leading up to Lia’s diagnosis for type 1 diabetes I was enjoying a resurgence of interest in science, brought on perhaps by my reading of the book by Bill Bryson, A Short History of Nearly Everything, or more likely a result of my writing and a literary desire to be accurate and precise with details (it sounds better anyway, than just saying I wanted to know the answer the next time one of my kids asked me a question about the relationship between particle movement and temperature. Still not sure I could explain that one).

Either way, as a writer and now as a father of a child with a chronic illness, I spend a good bit of time reading books and browsing journals with a dedicated science flavor to them. Some I come across go over my head and it’s those presenters and authors who, like Sagan, have a talent for bringing the topic alive and in terms I can understand that bring me the most benefit and also the most pleasure.

But the wheres and whys and how-comes and this-and-thats of diabetes take my interest in a science to a new, intriguing level, where it’s not just for enjoyment or enlightenment that I read and follow the research surrounding the treatment, prevention and cure. It has in our home a real and hopeful application.

Science and a real world connection. Envy, indeed. Granted, there’s more that a father might wish, but what more could a little boy ask for?

The Genius of Intuition

There is something I just don’t get yet. For as long as we’ve been administering Lia’s insulin through a pump we routinely find ourselves relying on intuition when determining her dose. A word problem of how this happens might look something like this:

Lia and her dad are on a field trip to visit a Native American settlement that had been founded and recreated along the banks of a very old river. It is a three hour car ride from school, for which they program a +30% temp basal. They arrive and while watching a documentary film of the tribe, Lia indicates she’s feeling shaky. Fearing a low, they apply an alcohol swab to her finger and check her blood. It reads 331. To bring it down, the pump suggests a dose of 4.10 units of insulin. The two of them talk and decide that 4 units is just too much, especially for the way she is feeling. They agree on a dose half that number. They finish the film and go outside and stand in the rain to watch a demonstration of primitive hunting, after which it is lunchtime. Ninety minutes has passed since Lia received the dose. Before eating, she checks her blood and the meter reads 64. Lia and her dad share a perplexed look with one another. With almost one full unit of insulin still on board, what might have happened had they given the full amount?

It may be that Lia is still honeymooning, though her endocrinologist thinks not. It may be the first reading was just wrong, perhaps her finger wasn’t cleaned properly, maybe it was a meter accuracy issue.

Or it could be that treating diabetes isn’t really just a matter of science. It requires more than mathematical logic and the relationship of quantity, patterns and conjecture, but must also take into account the most primitive and genius of the human condition, the element of instinct.

Not to take anything away from science. It is science that made the field trip that Lia and I were on even possible, without it the village would’ve stayed lost forever. But just as emotion and intuition were certainly a part of the people of that great settlement, and possibly even its demise, I wonder where in the complex world of artificial re-creation does the word hunch fit in.

On November 14, World Diabetes Day, Juvenile Diabetes Resource Foundation Advocacy is hosting Type 1 Talk in an effort to bring type 1 communities together from across the country for a lively and engaging discussion on various pertinent topics. To join the talk on Facebook and host or find your own Type 1 Talk event click here.

If you too use intuition for treating diabetes and would like to suggest your own question for the moderator or cast your vote for Without Envy’s suggestion, click here before the end of the day today, October 22, and under topics search: emotion.

The Beginnings of a Long-term, Long-distance Relationship

It is difficult for me to write about the research being done by the Juvenile Diabetes Research Foundation and others like them. This is partly because of the science involved and the fact that I have not yet fully educated myself on the terms and studies being done to cure and treat diabetes. To pretend to know what I mean when I say the community is working hard to use anti-CD3 therapies to preserve the function of beta cell insulin production in newly diagnosed cases would be a disservice to myself as a writer and to you as a reader. I don’t have any idea what it means or what it involves. Writing about research is difficult also because when I write I try my best to look at the words I use as if it is the first time I am seeing them. That way, the emotion in them is fresh and visible, and hopefully it is that way too for you when you read them.

Diabetes, however, is a disease with a history, and as such is no easy thing to write about. With history comes eyewitness accounts, expectations, and above all else, context. All of these are things that can derail good writing, but context especially can ruin the results. For instance, within the same year that insulin was discovered, explorers uncovered King Tut’s tomb in Egypt. Since then, science has revealed that the young Egyptian pharaoh died as a result of a leg injury and a bout of malaria, not of murder as was long suspected. The discovery of insulin, therefore, taken in the context of this shared history with a mummified king seems to have fallen far short of its potential. How is it researchers can unmask the cause of death of a three thousand year old boy-king, and not unlock the secrets that will rid the world of diabetes?

I don’t know, but fortunately there are others stepping up to explain it. One of those is John Brady, a chairperson and member of the international board of JDRF. I recently had the opportunity to meet and listen to John speak at a research update hosted by my local chapter.

The event was sparsely attended, a result perhaps of a plethora of same information easily pulled from the web and not from a lack of interest in the subject matter. I suspect many are like me, armed with only inspiration, and not proven scientific knowledge. Certainly, with a population of nearly one million in the region in which I live there is no shortage of diabetes patients or caregivers. Nonetheless, if the dozen of others like me in attendance of the one hour debrief is indicative of the other two sessions there is, it might suggest, a dearth of interest in face-to-face communication. Sadly, that’s to be expected: where the internet gains in information sharing it loses in direct personal involvement. Let’s hope that the spirit for receiving such news has not dampened amongst its strongest supporters and those who would benefit the most and that the slight turnout was a matter of timing and inconvenience.

That said, I found the update to be both reassuring and a tad bit troubling. First, the work being done is astonishing. I can only hope that it translates into something useful and concrete in terms of a cure for my daughter’s diabetes. But listening to Mr. Brady speak I could see how someone who is familiar with the history of the disease and has been around diabetes for a long while could grow weary of all the pledges. It’s like telling your kid you’ll play catch with them but never getting past the front door. A promise is not the same thing as action, and eventually, the kid will quit asking.

Mr. Brady prefaced his discussion with the comment that JDRF changed its strategy in 2004 and moved from a position of passive funding to one of active management. This was necessary, he claimed, in accelerating the discovery, development and delivery of a cure. The preceding environment was apparent. Throughout his talk, he referenced still-inconclusive studies that had been decades in the making. Though exceptional in both terms of treatment and cure, such lengthy trials with no immediate plans to bring to market don’t sound exactly promising to the father of a newly diagnosed child. They were needed available yesterday.

But as even as the scientists working on an ancient murder case discovered: yesterday’s not everything it seems. It’s tomorrow that’s often the torch bearer of better and brighter news.

Knowing Beans

Meanwhile, we were very hungry for information. We knew very little about diabetes and what we did know consisted mostly of what we had learned from my father’s type 2, which he suffered after a long while of poorly managing his congestive heart disease. Even that, because we did not live nearby, was limited to the occasional finger prick or food preparation around meal times. More often his diabetes was kept like tens of millions of others: quiet.

But where to begin? Who and what that I read could be trusted? A web search on the term diabetes alone generated 66 million results. Type 1 Diabetes yielded a little bit smaller return at 17 million. Children with type 1 diabetes, just over 4 million. In fact, you could drill down as far as you liked — cure, symptoms, treatments, statistics, research, diet, behavior, life expectancy — and still come up with millions of possibilities. And that too was part of the problem. What exactly was I looking for?

Up until then, and really the entire year prior to Lia’s diagnosis, I had been on somewhat of a fence in my life, though even that analogy, I feel now having written it, is inadequate in that it suggests I was discontented or directionless. I wasn’t. I was actually quite happy working as a writer, doing what I love best to do, and spending more time with my family than I had ever been allowed when working an outside job. But the economy, the wars and domestic affairs, were both pushing and pulling at me. I wanted to be engaged in what was happening in the world around us for myself and my family’s sake, but at the same I fancied withdrawing to a simpler life on some mountainside, writing novels no one would ever read and our family pretty much tending to itself. It was never likely to happen, with children involved even self-reliance is better in moderation. So we settled instead on a garden, which brought us some independence, good health, and much learning and work to do. Toward that end, my wife and I threw ourselves into the task, determined, in the words of Thoreau, to know beans.

But the knowledge of growing a vegetable patch is much different than the knowledge needed to fight diabetes. With a plant there is a natural order of events. The seed in the soil once nurtured becomes the tiny shoot, which sprouts leaves, gathering nutrients from the sun, and in time bears food. It is a very deceptively simple process, one for which it requires little help. My job mostly was to prevent any intrusion into the process, then get out of the way and let nature take its course. Diabetes is not that way. You do not set the seed and forget about it.

But really, where do you begin to know diabetes?

The treatment of course is important, critical, in fact, so in the first days home from the hospital we relied on the material provided by the pediatric endocrinologist’s office, which taught us the basic survival skills we now needed: dosing insulin, counting carbs, recognizing the signs of low and high blood sugar. For a more detailed picture, we devoured The First Book for Understanding Diabetes. Narrated by the Pink Panther, it delved deeper into nutrition, complications, self-management, and general support. In preparing for Lia’s return to school and the creation of a 504 plan on her behalf, we adhered almost verbatim to the School Advisory Toolkit for Families published by the JDRF. To prepare her classmates, I met with them during lunch one day and we read and talked together about diabetes. They asked questions and I answered them best as I could.

There were other sources, of course. Personal accounts, research updates, clinical trials, articles and books on food, treatments, d-kits, and tips on coping. Works of investigative journalism by Hirsch and by Hurley. Blogs by Kerri and Patricia and Leighann. We exhausted the internet, the library, the educators, and all that we learned was and is still not enough. But at the same time it’s a bit much and overwhelming. It’s almost like being on that fence again, straddling two worlds, one that seems dead set against you and the other that makes you feel safe, protected, and cared for.

Still I wonder: with raising a garden there’s an end, a harvest. At the end of knowledge is what? Empowerment? Inspiration? Action?

As a parent of a child with diabetes, I can honestly hope it’s all three.

Hope

I mentioned hope. In the days following Lia’s diagnosis, one of the first things we noticed in our efforts to understand diabetes was the plethora of information out there. Looking back through my internet search history for one day last week out of 289 different web pages I had visited for the day, eleven had nothing to do with diabetes. These were local or national news sites, social media or one of my kids surfing the web for a movie to watch. The other 278 were in some way connected to furthering my understanding of the ins and outs of this challenging disease.

Toward that goal, I’ve purchased or borrowed or checked out of my local library no less than a dozen books dealing with diabetes. I’ve watched web logs and spoken with family and friends of families and friends who’ve been touched by diabetes. Talked with nurses and doctors and pharmacists. Attended classes with educators. Read brochures and booklets and periodicals. Watched videos of children discussing their diabetes. And since bringing Lia home from the hospital, I’ve been part of an on the job training program like none other I’ve ever experienced.

Needless to say, I’ve learned a lot.

For instance, I learned that insulin must be stored in a refrigerator, not in the car in the hospital parking deck where it may sit for twenty-four hours. I’ve learned the importance of checking your pharmacy order for errors before you leave the store and not days later where you’re likely to discover they gave you the wrong test strip.

I’ve learned that if you make homemade pizza every Saturday night in order to enter figure the carb content of a typical serving, you need to know the weight of that pizza in ounces or 100 gram increments, not in terms of she eats two slices.

Also I’ve learned in relation to foods that vegetables and legumes are good for people with diabetes unless, of course, you’re talking about potatoes, corn or lime beans, which are technically fruits and have a high carbohydrate content.

I’ve learned that it matters where you inject and when you inject and whether you pinch the skin or not. That three a.m. blood sugar readings can keep you up the rest of the night no matter the number.

I’ve learned that Type 1 Diabetes makes up only about 10% of the seventeen million Americans diagnosed with the disease, the rest have Type 2, and that insurance does not consider either one life-threatening despite the fact that diabetes is the fifth leading killer of Americans and that a hundred years ago before the discovery of insulin, and thousands of years before that, the lifespan of a child post diagnosis of type 1 diabetes was measured in days, not years.

But I digress. I intended to speak about hope, not impediment. But the two as I’m learning are in fact intertwined. Obstacles spur hope, hope, in turn, illuminates the obstacles. To be sure they are what drive researchers all over the world in their focus on the prevention, cure and treatment of diabetes and its complications. Studies into self-regulating insulin, the artificial pancreas project, continuous glucose monitoring systems, which was cited in 2008 as one of the Top 10 medical breakthroughs by ABC News.

The list goes on: regeneration of insulin producing cells, cell replacement therapies, immune systems response studies, metabolic triggers, gastrin combination therapy, the growing global burden diabetes presents to the international community.

For someone so new to diabetes and still struggling with the sheer weight of the diagnosis, it is reassuring to learn there’s a wonderful community out there overcoming the obstacles one by one, learning in much the same way as we’re doing ourselves, through study and trials and errors, and an endless supply of hope.

Click here to learn more about the research being done for Type 1 Diabetes. To become a part of this community and donate toward finding a cure, please see here.