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Posts tagged ‘inspiration’

Happy World Diabetes Day (no, really)!

If there’s a silver lining to a diabetes diagnosis, it’s the people.

People like Matthew Brown, diagnosed at 2 years old in 1959. He’s receiving an award tomorrow for living with Type 1 for 50+ years, and he graciously agreed to let me post his account of life with Type 1 and why T1 has turned out to be a very good thing. His quick, cheerful emails about how his mom taught him to love life and how wonderful it has been (if nothing else, read his “Summary” below) had me blinking back tears of relief.

His original post is on the site for ConnecT1D – a local group also dedicated to making T1 something that opens doors and brings people together.

Happy World Diabetes Day! And Matthew – thank you (and your mom :)).

 Having Type 1 Diabetes 50+ Years

Matthew Brown

Introduction

I have a fairly long viewpoint of living with diabetes since the age of 2 starting in 1959. As many of you may have heard we used re-usable, large gauge needles (something akin to using an 8 penny nail) and glass syringes that were boiled each day to sterilize. Blood sugars were checked two ways; one by “how you felt” and two, urine “test stripes” with 4 colors; there was no real way to check accurate blood sugars. Other than knowing to eat healthy and exercise regularly, the routine was fundamentally to do the best you could based a lot on gut or how you felt physically.

Though the above tools for monitoring diabetes were not sophisticated, it did not prohibit my living in any shape or form; quit the contrary. My parents put me into situations and opened more doors than perhaps I might not have experienced WITHOUT having diabetes, so in an odd way this event in my life turned out to be a very good thing. I became confident of myself early in life by learning to cope and manage each day. We all have “stories” on things that have happened to us, particularly with ultra low blood sugars that I will not bore you with here. In a twist of fate diabetes opened new horizons to me that may not have existed. To this day, my extensive work overseas in Africa and particularly Asia has a lot to do with the sense of adventure my parents and family encouraged me to go after. Life has always been a very full glass for me regardless of the circumstances. So this is all of our story isn’t it ? Not what we have but how we deal with it.

Another bright note for me that diabetes caused was an “additional” layer or insight into the sensitivities of others. Meaning, my senses were heightened by other’s ordeals; be they physical, mental or emotional. It wired me into becoming a more caring person knowing the day to day, hour by hour living I went through. This too became useful to me in my living as I thought little or nothing of my situation, and it keyed me into others I might be able to help in life in some capacity. While cliché, it’s true, your attitude determines that do not see yourself as a victim but as strong survivor and “opportunist”. Or as some of the top type 1 world athletes tell us they actually have an “advantage” over others as your subconscious goes into overdrive and we seem to leap tall buildings or compete in ways perhaps we would not if we were not presented with this living “opportunity”.

Present

Today as most of you type 1’s know, diabetes has evolved immensely on multiple levels. Insulin I once used from pigs and cows is now available in recombinant DNA born out of human cell growth development. Syringes that were once HUGE in gauge are now very small in gauge (around) and in length, along with machining and lubrication that make taking shots a breeze. Further, we now have very sophisticated insulin pumps, one which I switched to a year ago following 50 years of using syringes with Regular and Lente, then Humalog and Lantus, and now use J&J, Animas One Touch Ping with Humalog. Point is, the options are many for health management.

Tricks of Trade & Experimentation for Living

If I had to pick one “thing” that has worked for me it is this; it comes down to trying different approaches that work very specifically for YOU ! One size does not fit all like it use to in the “old” days of having diabetes (there were LOTS of “NO’s” back then; now it’s about what WORKS for YOU !). Men, women, young, old and literally hundreds of factors including your own gene pool and chemistry make your body into a min-lab. We can definitely learn techniques for good health from doctors, nurses, books, seminars, events and so on; most if not all which I still pursue and use, however in the end it comes down to you figuring out what foods, use of insulin and exercise work for you. I would like to share a couple ideas that have worked for me.

First, I start with my day, whether it is more stagnant or I am going to the gym (which I do daily) or I’ll be biking, hiking or skiing all day. Each is uniquely different for obvious reasons and adjustment to each through increased/decreased insulin use and same with food to accommodate the above is the primary driver. I start with my activity level and work “back” toward then doing number two, figuring out roughly how much food I want to consume.

Second, I generally eat more carbs during the day such as fruit, sandwich bread, yogurt and so on (also with protein in morning and at lunch), and move toward more veggies and protein at night. The result is I get the proper “brain food” via carbs I need for work and energy and can adjust my insulin to get me to my targeted blood sugar (average A1C’s run around 6.5) and reduced variability (keeping “swings” from low to high more stable – these swings as most of you know if kept down overall help prevent the long-term negative affects to kidney, eyes, etc). Then at night, I bulk up on food that fills me with veggies and protein (still eat carbs like non-fat milk, carrot juice, salads etc, but less processed carbs like cereal, rice, pasta which tend to kick in sugars 4 to 8 hours later and impact nighttime BG’s). So day time is more carbs for energy/brain food; nighttime more protein/veggies for BG stability so when I wake up my BG’s are close to the 100 mark. It’s much easier than you think if you have not tried it. Course overall the key is BALANCE of food for good health. And, focusing on healthy foods vs. lots of fried, fatty animal meats, sugar based is really no different at all from a non-diabetic individual.

Third, then put in whatever amount of insulin matches the above two; first activity then food to get me to my target BG followed by insulin “matching”.

Experiment

I would say beyond the above “routine” of activity, food then insulin matching, the next component is to TRY many varied approaches. We are not necessarily talking about doing reckless things here; we are discussing trying different food options that work for your unique body. For me, some foods have been great such as cottage cheese, my “leveler” food, and others like fig Newton’s that I can count on repeatedly for fairly exacting BG outcomes if desired for a snack. Each of you has your favorites that work for you.

Food exploration is one means, but so is insulin use. In some cases I will use my temporary lowering of basal rates on major biking, skiing and hiking days, and others I’ll load up far more on carbs; and in some cases combine and tweak both for ultimate outcome. I discovered that while I do tend to eat a lot of carbs hiking, after going in for a VO2 testing (oxygen body use) I was still far too low, so I’ve added an additional 60G of carbs per hour with excellent results. I also worked up my own custom basal/bolus split at lunch (I will not give mine here as I cannot recommend using my formula for you); the outcome is my post lunch BG’s 90 minutes to 2 hours are always hovering around 100 vs. the spike around say 200 with eventual drop to normal BG level. It took me a while to do this, but it’s amazing what you can do if you want.

I’ve turned my body into a lab most of my life; I also mentally make it a game or some challenge, goal or whatever vs. something I “have” to do. It’s all in the mindset. And, I throw in a big dose of humor and give myself grief when I really blow it “jeez you goof Matthew…..next time…” which takes all the seriousness out of it and life. Lastly, I tend to isolate the above variables one by one to not confuse my analysis and progress; minor adjustments are easier to track, though you can try more stacked approaches if you have a good grasp which change is affecting your final goal. Becoming adept at seeing more variable changes at once takes some time and practice, but again, it’s about moving forward and trying new things.

Summary

As strange as this is going to sound I have BENEFITTED from having type 1 diabetes. It has made me a strong, confident person who cares deeply about others via the subconscious impact this situation has brought about. Course, this all comes from how we choose to live with this situation – victim or survivor, looser or beneficiary, challenged or gifted, an embarrassment or a role model, defeated or hope to others in this world ? What is your choice ?

Once that one simple but important choice is made, the rest is “mechanics”. During my entire life I have never felt bad having or living with diabetes; I had no time for thinking about it, there was too much life to live ! Once, when I was around 12 years old, I lay in bed and asked the question “why” not in like “why me” self pity question, but just “why” and the answer that came back to me was “why not”. That simple little platitude put things to rest very quickly. “Water under the bridge” so to speak is really that simple; it just IS !

The opportunity for living an incredible life as a type 1 is now quit amazing. The knowledge and tools at our disposal are immense. All we need is some curiosity, willingness to learn, a desire to live a wonderful life and moving forward. The rest honestly is nothing more than modifications or adjustments. The JDRF, ADA and now this organization, ConnecT1D, provide unlimited avenues for education, motivation and endless forums for making our lives that much more spectacular to celebrate.

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Highlights from CWD Technology Conference in Seattle

I went to the CWD Focus on Technology conference in Seattle last weekend and floated away in a hazy cloud of hope. It’s true – only smart, hilarious, beautiful people live with T1, and meeting so many in one place at one time was incredible.

Three talks hit on the main issues we struggle with most of all right now: meal spikes, sleep, and sanity.

Strike the spike! 
This was Gary Scheiner’s session on getting mealtime spikes under control (his Type 1 University offers this course online). It was a great sanity check, and using one of the techniques the next morning made breakfast a lot less grisly.

Causes behind meal spikes (i.e. “We’re pre-bolusing big time, so why the f*#& are BGs still screaming sky-high afterwards?”)
* Synthetic insulin still isn’t rapid enough to keep up with most food digestion, except for really low GI foods.
* Type 1 diabetics digest food faster than people with functioning pancreases – so again, the insulin is too slow to keep up. Kids digest food even faster – hence the nasty spikes.
* How cruel is this? – the pancreas in T1 diabetes produces glucagon when it’s least needed, right after meals, adding to the spike.
* Lows before a meal accelerate emptying of the stomach, which means the meal spike will hit even harder.
* Breakfast spikes are the worst, partly due to not having much insulin in circulation from nighttime basals. At lunch and dinner, basals are higher and there’s usually extra insulin in circulation from earlier snacks or corrections.

Recommended post-meal targets:
* Kids under 5: Under 250
* School age kids: Under 220
* Teens: Under 200

We hit these targets less than 10% of time, and a Yale blind study on peaks found the average after breakfast was 293, after lunch was 291, and after dinner 280 (yay, we’re normal!). Doctors, seeing the spikes, often recommend a lower carb ratio – which just causes a crash after the meal.

What to do?
* For older kids, Symlin (off-label) or amylin.
* Bolus for the entire meal up front, but split it and eat the second half an hour or so later. (This worked on Luke – we held off on milk, the worst offender, until he was in the car for the commute to pre-school, and the spike was very gentle.)
* Use physical activity after the meal to speed up insulin absorption and slow digestion (could be something as gentle as walking the dog).
* If a low before the meal is causing a rebound, use a temp basal for 2-3 hours.
* Protein, fat, and fiber help by slowing digestion (low GI foods), as does vinegar. 2t of vinegar have a fatty acid that slows gastric emptying and can lower spikes by 50 points. Sourdough bread, strangely, is low GI due to the this acidity.
* Consider avoiding pure protein, because protein by itself raises blood sugar (on average, half of protein grams turns into carbs, but hard to predict). Having a few carbs with it prevents conversion.

He wasn’t a fan of pre-loading morning basals to blunt the spike, since you’re then locked into a certain time and # of carbs.

Is it Safe to Sleep at Night? (Bruce Buckingham)

The answer, in short (recent JDRF ad aside), was “yes.” Based on many blind studies, it seems it takes 3-5 hours at or below 50 to cause a siezure. So a sensor lag of 5 minutes is not an issue – hypo minimizer trials at Stanford had proven effective and safe without causing hyperglycemia.
I approached Dr. Buckingham after his talk to ask – is it sane for us to be up as much as we are at night, with a T1D 3-year-old? “Oh,” his face fell. “The little ones are so volatile.” Sigh. Which led me to the keeping-your-sanity session –

It’s Not Just a Numbers Game (Joe Solowiejczyk)

This was the first time I’d heard Joe speak, and I laughed so hard I cried through most of his talk. If you haven’t heard him, check out his presentation on CWD!

He talked about finding balance between giving yourself a break (like scheduling “diabetes depression days”)   and making care a non-negotiable with kids.

“What do you say when they say they don’t want to test, because it hurts?” one parent asked. “Of course it hurts!” he bellowed in a thick Long Island accent. “If you enjoy this, you’re sick, and you need help! But they need to do it. They need to test, write down their BGs, and take their boluses.”

“How do you respond to the teenage ‘You just don’t get it?'” another parent asked.  “Don’t make the mistake of treating her as a rational human,” Joe shot back, “She is not! You don’t need her good housekeeping seal of approval! You say, you’re right, my darling, I don’t, and I don’t care.”

He wasn’t a complete hard-ass either, though. Other suggestions for helping kids deal included driving over their (back-up) glucose meter in front of them and saying, “Wow, that felt good!”; praising them for having a meltdown about diabetes (feeling safe enough to do so); and the hardest – ff your kid worries, don’t tell him not to worry. Tell him hoe brave he is, and that sometimes you worry, too. Allow kids to have their feelings, but don’t try to fix it. Just be there for them. That’s the hardest and easiest part of parenting a kid with T1D.

JDRF Seattle Sweden Diabetes Day – Sept. 24

This sounds bland but is a really fantastic opportunity to hear about the latest in T1 research nationally and internationally. If you live in Puget Sound, sign up now!

JDRF puts this on every year and pulls in top researchers, CDEs, pump and CGM reps, and other experts. Last year’s line-up included updates on the artificial pancreas; best practices for diabetes management by Ragnar Hanas (author of Type 1 Diabetes – best book I’ve read on T1 management); a joint US/Sweden epidemiological analysis of T1 increase, prevalence, etc.; future Medtronic plans; a keynote by Jeffrey Brewer (the man is an incredible speaker) on JDRF’s future direction; and I’ll just stop here. It was amazing.

There’s time for Q&A with each talk as well. My favorite question was from a woman who noted that beta cell count increases during pregnancy, so – aside from encouraging her 18 year old daughter to get pregnant, what other options were out there for increasing beta cells…?

Register here.

JDRF NW got a larger room this year so more can attend (it filled up immediately last year) – it’s again at the Microsoft Commons on the Microsoft campus in Redmond.   There will be on-site care (Kids Zone): contact the JDRF Northwest Chapter office at jdrfnorthwest@jdrf.org or call 206-838-5153.

I want this on my wall!

Amy over at Free Snack has a talented family and wicked sense of humor (thanks to Jen for connecting us!). Maybe she can be convinced to get this and other art on her site out into the world – I want this on my wall!