stark goals, planned steps, an updated manifesto

I have a friend who’s a personal trainer. He’s not “my” personal trainer; I can’t afford one. And he’s offered helpful tips from time to time, so I felt comfortable asking him for a quick take on a trainer and nutritional adviser with an online presence that I’ve been watching from a distance. My friend responded with a provisional “no red flags,” went on to recommend one of his own evidence-based sources on training and nutrition, and asked a follow up: What was I finding in Trainer X that I hadn’t found elsewhere? Was the potential value I was seeing absent from other sources, or did it contradict them?

I didn’t have a chat-sized answer ready. Apparently I’ve been brewing an answer, because it started to take shape today at the gym, albeit more manifesto-sized than chat-sized. As he enlarged my question, I shall enlarge his: What do I want from type 2 diabetes care and management that I’m not getting? And to what extent are those perceived lacks systemic, affecting all of us living with this chronic and progressive disorder?

I want:
  • my feet to still be attached when I die.
  • to be walking the day I die
  • whether or not I am working, to have a brain capable of doing the work I do now on the day I die
  • to reverse if possible, and otherwise to slow, the recent steady rise in HbA1c, and thus actual damaging levels of blood glucose.
Keeping my eyesight and avoiding stroke or lingering catastrophic heart or kidney disease would be nice bonuses.

I have learned that comprehensive care and management depend most on my own knowledge and efforts. So what can I do to get what I want? Probably at a minimum:
  • Walk every day.
  • Work most days; engage in intellectual activity every day.
  • Build/sustain/replace muscle, i.e., do resistance/weight training. I’ve been pretty persistent at this for the last (and first!) year, with a primary focus on (machine-mediated) leg presses and a secondary focus on chest and shoulder presses to strengthen around a mild persistent repetitive strain injury. I could likely use more frequency, and possibly more variety.
  • Crack the nutritional nut. At the moment, that seems to require more vegetables and minimal refined carbohydrate. With that shift, moderate fat and protein seem largely to take care of themselves; evidence suggests reducing animal sources for both. (So maybe more actual nuts.)

Years of setbacks and recovery demonstrate that my self-care has been a Sisyphean task, with which I can use all the help I can get. Where could I use more focus, discipline, and/or support?
  • I’m not sure why I don’t walk and bike more. I enjoy doing both. There’s some motivational, get-off-my-buttional factor missing.
  • Work. You’d think having walking-around money might be motivation enough. Apparently not.
  • Food. I’ve become much more selective and strategic about what I bring home from the food bank and how I use it. Simultaneously, the food bank has become more selective in what it accepts, and there’s more protein available. It’s been too long since I’ve seen a dietician/CDE, and I have a request for a referral on my list for my primary. A higher food budget might help, too (see “Work,” above).
  • I need to resume the search for a neuropsychiatrist, with the aim of addressing comorbid neuropathy and depression in some potentially integrated way.
Where do I encounter static or resistance as I work toward my goals?
  • I was taken aback to hear one of my doctors—a good and helpful one—say “Since you won’t lose weight…” as if it were out of some perverse willfulness. How about, “Since your insulin resistance keeps you in a state of energy deprivation out of proportion to your energy intake…” Yes, I can lose weight, i.e. fat. I lost a hundred pounds in a year. And that was a full-time job. Bye-bye, 401(k)!
  • That point, finally, brings us back to my friend’s question. What I would like from the physical training world, and the nutritional world, and the medical world, and society at large, is a recognition that my physical symptoms stem from a highly heritable and environmentally-triggered metabolic disorder, the nature of which is not understood—not solely from persistence in the same bad choices US culture generally makes when it comes to diet and physical activity.
  • Along with the recognition that intensive behavioral intervention can improve type 2 diabetic symptoms and put the disease itself into remission, I'd like acknowledgment that underlying physiological processes will be fighting me every step of the way. (See notes on insulin resistance and pancreatic failure, below.)
  • If you are going to presume to help me, I want you to be at least as current as I am on the latest and best scientific evidence about what works and does not work.
  • If you presume to help me, I need you to understand the history of my struggles and what I have learned from them, and the psychosocial and socioeconomic worlds in which I live.
These last two points are common complaints from the diabetes online community (#DOC) and other chronic disease communities.
Apart from my personal goals and struggles, what general improvements would I like to see in diabetes care and research?
  • From the diabetes industry, I’d like less sugar-coating: “a few simple lifestyle choices,” my fat ass! How about a part-time job that runs intermittently from wake to sleep every day?
  • From medicine, I’d like less “good control,” a.k.a. “you’re doing well…for a diabetic” and more “You’ve got decent control. Are you ready to push on toward remission?”
  • I’d also like, from medicine and research, revised standards for screening, diagnosis, and intervention. One hundred mg fasting glucose per dL of blood is not a morbidity threshold (that’s closer to 86 mg/dL); it’s a statistical all-cause mortality cliff. And it’s the diagnostic standard for “pre-diabetes.” To be declared diabetic, you have to step further into the grave—by which time pancreatic failure may be far more extensive than has been recognized.
  • From research, I’d like fewer sham attempts to compare drugs to behavioral intervention that’s so inadequate as to be laughable. And of course, less throwing up of hands: “We tried behavioral treatment, and it just didn’t work!”
  • At all points of care and research, I’d like recognition that in the vicious cycle of insulin resistance and body fat accumulation, it's insulin resistance that can be measured first, prior to the appearance of dyslipidemia and other components of the metabolic syndrome. Evidence suggests I didn't become diabetic because I was fat; I became fat as a symptom of insulin resistance.
  • At all points of care and research, I’d like recognition that the triply symmetrical comorbidities of type 2 diabetes, depression, and poverty complicate any attempt at adequate treatment, whether based on behavior modification, medication, social support, or their clinically suitable combination. Coordinated treatment of mood and metabolism works better than either alone, and social support has demonstrated statistically significant and clinically important benefits.
I’m breaking from usual practice by posting this piece without citing sources. I’ll be back with them, though I’m not sure when. Meanwhile, I’d be happy to hear any of your thoughts that these engender.