Gary, Think Like a Pancreas, Scheiner as a short class on diabetes and pizza as a sample of the way classes at his Type 1 University work. Pizza is a challenge for a lot of folks so why not have Gary help demystify it.
April 30, 2011
April 27, 2011
Phil Southerland - "Not Dead Yet"
In the preface to his book, “Not Dead Yet” Phil Southerland asks, “Who am I to write a memoir when I am still in my twenties?”
'Cause you’re an aggressive, competitive, sometimes cocky, heck of an inspiration. Philbert.
This is the story of an ordinary kid. A kid with some passion and personal ambition who chased a dream and found some unexpected consequences while making other plans. I am not even sure that it is extraordinary that this kid brought type 1 diabetes, literally, along for the ride.
I am a parent to two type 1 diabetics. I find the most amazing thing about kids and adults successfully living with type 1 is their ability to put diabetes in its place. Second, close, but not first. It gets attention but not the title. Diabetes comes second to living life. These folks drag diabetes, kicking and screaming, into their dreams of the future. Dreams that diabetes at first seems to deny, yet in many enables. Dreams of acting, competing, writing, parenting, contributing and yes even professional bike racing.
Phil’s is one of these story. Diabetes, his family was told, would close off personal dreams and aspirations with blindness and early death. Ultimately it facilitated greater opportunities. That the story unfolds in this book.
It is not the story of a master plan but a process of growth to a life beyond, in spite of and because of diabetes. It is a story with a positive supporting cast of halloween candy, Snickers, Oreo Blizzards, Super Big Gulps, burritos and characters that come with them. I encourage you to discover and experience them yourself. They brought me a lot of big smiles.
As a type 1 parent I was particularly interested in reading how Phil viewed his mom’s roll in his life and with diabetes. I carefully make a distinction as we have rolls as parents and in diabetes management but they aren't always the same things. I see type 1 parents’ goal as raising kids to be creative, individuals actively purse their dreams as moral, useful contributors to society bringing diabetes along. That process isn’t flipping a switch and saying “Done!” it is gradual evolution. Seeing that process unfold in Phil’s life from the child, teen and adult’s perspectives is a uniquely valuable view for parents regardless of diabetes.
Phil’s story reinforces my belief that parenting diabetic kids isn’t about numbers. It is about the values that make for creative, active, useful, participant in life. On the rare occasion that Phil’s story talks about numbers it is to make points beyond them. About self care needed to facilitate the dreams. That Phil’s journey isn’t about numbers and is about discovering and channeling passions is a wonderful affirmation of brilliant parenting.
To a dad of two type 1 kids and two kids with their own challenging opportunities Phil hits real close to home when he writes about the risk of the non diabetic siblings becoming the others. That is something the diabetes parenting community doesn’t talk enough about. I worry that I am guilty of falling down in this area but take comfort in the idea that I fall down and stand up for the diabetics too. I hope my lack of parental perfection evens itself out.
A lack of perfection is one of the false gods of diabetes. We make idols to it and pray to those idols seeking comfort in numbers. In doing so we elevate numbers to goals and risk a myopia that totally misses the idea that variation can be part of a healthy learning process. Phil ranged about seeking adventures on a bike. Numbers went along not in the pursuit of perfection but in the support of the freedom to roam.
One of my favorite lines from the book anticipates being less than perfect. It is brilliant, sage and simple advice, “A key part of being a diabetic is choosing trustworthy friends, reliable friends that you can depend on in a crisis.” I submit that is equally true if you take out ‘being a diabetic’ and insert ‘life’ but possibly more true for diabetics.
I think that a similar substitution is true of the book as a whole. It isn’t about diabetes it is about life. As such “Not Dead Yet” is great read for anyone whether they live with diabetes or not.
Through this book Phil becomes a friend. It is clear that, as a regular guy, he expresses friendship through good natured ribbing and honest, brief, airing of differences. So here friend, three hundred odd pages and other than a typo on page 272 (that is OK, I am good for a typo every sentence or two) I loved all but three words. The title.
To me type 1 isn’t about death it is about living. That I have such a different attitude from our family’s experiences than he does from his says a lot about the changes in expectations from Phil’s diagnosis in 1982 to our first twenty years later. So I affectionately recommend to Junior a better title, from last three words, of the first paragraph, on his second to last page.
“I will Live”
The problem with my suggestion is to see that title’s real value, you need to have traveled the previous three hundred and seven pages. Those pages share Phil’s story of how to really live. It is a great ride. I recommend it highly.
I was given an review copy. I intended, after reading, to raffle it off. Having finished it, I want the kids to read it. So sorry you will have to buy a copy.
I understand the book goes on sale Tuesday May 10. There is a Pre-Order link right up there in the spiffy banner the PR folks let me use.
I look forward to sharing comments and spoilers as folks get their own copies.
'Cause you’re an aggressive, competitive, sometimes cocky, heck of an inspiration. Philbert.
This is the story of an ordinary kid. A kid with some passion and personal ambition who chased a dream and found some unexpected consequences while making other plans. I am not even sure that it is extraordinary that this kid brought type 1 diabetes, literally, along for the ride.I am a parent to two type 1 diabetics. I find the most amazing thing about kids and adults successfully living with type 1 is their ability to put diabetes in its place. Second, close, but not first. It gets attention but not the title. Diabetes comes second to living life. These folks drag diabetes, kicking and screaming, into their dreams of the future. Dreams that diabetes at first seems to deny, yet in many enables. Dreams of acting, competing, writing, parenting, contributing and yes even professional bike racing.
Phil’s is one of these story. Diabetes, his family was told, would close off personal dreams and aspirations with blindness and early death. Ultimately it facilitated greater opportunities. That the story unfolds in this book.
It is not the story of a master plan but a process of growth to a life beyond, in spite of and because of diabetes. It is a story with a positive supporting cast of halloween candy, Snickers, Oreo Blizzards, Super Big Gulps, burritos and characters that come with them. I encourage you to discover and experience them yourself. They brought me a lot of big smiles.
As a type 1 parent I was particularly interested in reading how Phil viewed his mom’s roll in his life and with diabetes. I carefully make a distinction as we have rolls as parents and in diabetes management but they aren't always the same things. I see type 1 parents’ goal as raising kids to be creative, individuals actively purse their dreams as moral, useful contributors to society bringing diabetes along. That process isn’t flipping a switch and saying “Done!” it is gradual evolution. Seeing that process unfold in Phil’s life from the child, teen and adult’s perspectives is a uniquely valuable view for parents regardless of diabetes.
Phil’s story reinforces my belief that parenting diabetic kids isn’t about numbers. It is about the values that make for creative, active, useful, participant in life. On the rare occasion that Phil’s story talks about numbers it is to make points beyond them. About self care needed to facilitate the dreams. That Phil’s journey isn’t about numbers and is about discovering and channeling passions is a wonderful affirmation of brilliant parenting.
To a dad of two type 1 kids and two kids with their own challenging opportunities Phil hits real close to home when he writes about the risk of the non diabetic siblings becoming the others. That is something the diabetes parenting community doesn’t talk enough about. I worry that I am guilty of falling down in this area but take comfort in the idea that I fall down and stand up for the diabetics too. I hope my lack of parental perfection evens itself out.
A lack of perfection is one of the false gods of diabetes. We make idols to it and pray to those idols seeking comfort in numbers. In doing so we elevate numbers to goals and risk a myopia that totally misses the idea that variation can be part of a healthy learning process. Phil ranged about seeking adventures on a bike. Numbers went along not in the pursuit of perfection but in the support of the freedom to roam.
One of my favorite lines from the book anticipates being less than perfect. It is brilliant, sage and simple advice, “A key part of being a diabetic is choosing trustworthy friends, reliable friends that you can depend on in a crisis.” I submit that is equally true if you take out ‘being a diabetic’ and insert ‘life’ but possibly more true for diabetics.
I think that a similar substitution is true of the book as a whole. It isn’t about diabetes it is about life. As such “Not Dead Yet” is great read for anyone whether they live with diabetes or not.
Through this book Phil becomes a friend. It is clear that, as a regular guy, he expresses friendship through good natured ribbing and honest, brief, airing of differences. So here friend, three hundred odd pages and other than a typo on page 272 (that is OK, I am good for a typo every sentence or two) I loved all but three words. The title.
To me type 1 isn’t about death it is about living. That I have such a different attitude from our family’s experiences than he does from his says a lot about the changes in expectations from Phil’s diagnosis in 1982 to our first twenty years later. So I affectionately recommend to Junior a better title, from last three words, of the first paragraph, on his second to last page.
“I will Live”
The problem with my suggestion is to see that title’s real value, you need to have traveled the previous three hundred and seven pages. Those pages share Phil’s story of how to really live. It is a great ride. I recommend it highly.
I was given an review copy. I intended, after reading, to raffle it off. Having finished it, I want the kids to read it. So sorry you will have to buy a copy.
I understand the book goes on sale Tuesday May 10. There is a Pre-Order link right up there in the spiffy banner the PR folks let me use.
I look forward to sharing comments and spoilers as folks get their own copies.
April 26, 2011
What's In a Number?
I just read a comment from a parent who was disappointed by an A1C, in a kids full into puberty. It had gone up a half a point to the lower 8s. The parent was upset. Here is my reply:
This is the problem with numbers. They miss the point.
If there had been no number, you may well have been pleased to hear the doctor say that you, both of you, are coping with the swings of puberty as well as your endo could expect. That you are adapting and making changes appropriately. You could take pride in hearing nobody could have managed the diabetes better. You could have felt great about an active life style, that while it adds to the challenges of blood sugar management now, is a great life style habit that most Amarican's lack and will contribute greatly to years of healthy living.
I say it all the time, our goal as parents is to raise kids to be creative, actively purse their dreams as moral, useful contributors to their communities bringing diabetes along for the ride. None of that is about any one BG or A1C number. It is all about long term focus most of which has little to do with diabetes per se. All the diabetes management is a means to an end and that end isn't numbers it is quality of life that can't be expressed in a number.
Numbers aren't the point.
Raising kids to become great young adults is the goal.
Numbers, at best, are a means along the path to that end.
Be proud of every step to the real goal. You're doing fine.
This is the problem with numbers. They miss the point.
If there had been no number, you may well have been pleased to hear the doctor say that you, both of you, are coping with the swings of puberty as well as your endo could expect. That you are adapting and making changes appropriately. You could take pride in hearing nobody could have managed the diabetes better. You could have felt great about an active life style, that while it adds to the challenges of blood sugar management now, is a great life style habit that most Amarican's lack and will contribute greatly to years of healthy living.
I say it all the time, our goal as parents is to raise kids to be creative, actively purse their dreams as moral, useful contributors to their communities bringing diabetes along for the ride. None of that is about any one BG or A1C number. It is all about long term focus most of which has little to do with diabetes per se. All the diabetes management is a means to an end and that end isn't numbers it is quality of life that can't be expressed in a number.
Numbers aren't the point.
Raising kids to become great young adults is the goal.
Numbers, at best, are a means along the path to that end.
Be proud of every step to the real goal. You're doing fine.
April 19, 2011
Type 2 Autoimmune - Say What?
A Standford / U of Toronto study suggest that type 2 may have roots in an autoimmune process.
That link is http://med.stanford.edu/ism/2011/april/engleman.html and in part it says:
The significance is that this suggest a new process for type 2, an autoimmune process. The study suggest treatments based on this autoimmune reaction that are new ways of addressing type 2, specifically an antibody called anti-CD20. This antibody is already approved for use in humans to treat some blood cancers and autoimmune diseases.
Daniel Winer, DM of Stanford says, “We are in the process of redefining one of the most common diseases in America as an autoimmune disease, rather than a purely metabolic disease.”
As regular readers may have guessed, mice were involved in the studies. How this translates to humans is an open issue. This statement warented it own paragraph in the relaease: "Despite the treatment’s effectiveness in mice, the researchers caution against assuming rituximab will work in humans with established type-2 diabetes."
More Studies are require.
YDMV.
That link is http://med.stanford.edu/ism/2011/april/engleman.html and in part it says:
Nearly all type-2 diabetes drugs marketed today are designed to control a patient’s high blood sugar levels — a symptom of the body’s inability to respond properly to insulin. However, the researchers found that anti-CD20, which targets and eliminates mature B cells, could completely head off the development of type-2 diabetes in laboratory mice prone to the disorder and restore their blood sugar levels to normal.As I understand this release, and let me be clear - I don't understand it, T cells and B cells inflame fatty tissues. This results in fat cells growing so rapidly that they exceed their blood supply and begin to die. To clean up the dieing cells the immune system creates macrophages. This process of inflammation, dieing and clean up inhibits the remaining fat cells ability to respond to insulin.
The significance is that this suggest a new process for type 2, an autoimmune process. The study suggest treatments based on this autoimmune reaction that are new ways of addressing type 2, specifically an antibody called anti-CD20. This antibody is already approved for use in humans to treat some blood cancers and autoimmune diseases.
Daniel Winer, DM of Stanford says, “We are in the process of redefining one of the most common diseases in America as an autoimmune disease, rather than a purely metabolic disease.”
As regular readers may have guessed, mice were involved in the studies. How this translates to humans is an open issue. This statement warented it own paragraph in the relaease: "Despite the treatment’s effectiveness in mice, the researchers caution against assuming rituximab will work in humans with established type-2 diabetes."
More Studies are require.
YDMV.
April 18, 2011
Tea and Crumpets News Network: Minimed Enlite
News and comments on diabetes products from Europe is getting to be a regular staple of YDMV. On one hand it is good that new products are coming to market. On the other it is less than awesome that these things are not available here. It speaks volumes about the state of regulatory affairs that innovations for better care are happening in Ye Olde Countries and not in the the Colonies of the New World.
Our good friends at Shoot Up have a post up on the new MM Enlite sensor. Sort version of the story; smaller, less harpoon like inserter, six day life. The folks at Shoot Up are doing there best to get'm to try'm. Stay tuned to the Tea and Crumpets News Network (TCNN) for a review. Click over to the other side of the Atlantic and read up:
http://www.shootuporputup.co.uk/2011/04/the-age-of-enlite-enment/
http://www.shootuporputup.co.uk/2011/04/let-there-be-enlite/
Editors Note: It may be wise to click out now. All that follows is a pointless and silly rant.
Somehow the brain trust in Regulatory Prohibitions on Communications Division (#NotIntendedToBeAFactualStatement) of the FDA doesn't quite appreciate that information is fungible.
I can hears some alert readers, who haven't had coffee yet, asking, "What the heck did he just say, fungus-able? Information has a fungus, is that like a computer virus? Honey! Do we have Norton Anti-Virus updated? "
Don't get you knickers in a knot. Fungible means easily replaced with an other identical item. Money is fungible. Any one dollar can be use just like the next. Information is easily replaced with... other information. Nothing is as exchangeable as words.
Information that is prohibited by the FDA here is easily replaced with information from other sources. So while MM can't say Jack Diddly to anyone in the U.S. of A. about a new sensor (and for the record it was actually funny to listen to the verbal gymnastics that they went through not to say anything about new products at #MdetronicDAF), we can read our friends across the pond who can say something about the new sensors. The information get fungible-ed... er... something like that.
There in lies a problem: Information isn't as fungible as money.
Now folks, far be it from me to suggest that Bloggers are possibly flawed. (Other ones. Not me, of course.) It seems that instead of having patients rely on some kind of 21st century whisper down the lane it would be better if the vendors could come out and offer comments and or corrections on the misstatement that may work there way into blog-o-sphere mishmashes.
So in an effort to sort out the mess I am making here (a mess that is kinda making my point along the way) there is not a Regulatory Prohibitions on Communications Division at the FDA as far as I know. There are new sensors and meters available in Europe that aren't through the FDA black ops process (Black Ops = #NotIntendedToBeAFactualStatement.) More innovations including CGM enabled pumps are on the way into European markets and simultaneously US regulatory delay. I think we would all be better served if y'all didn't find out about these things solely from 'reputable' unofficial sources like say, me.
Seriously, I know better than to trust me.
All of this is not to say that I do not value the goals of the FDA or a regulatory process. I believe there is great value in safe devices (#IntendedToBeAFactualStatement). I like all parents of kids with T1 diabetes want the best for their kids. That starts with safe. I also believe that efficient markets crave information and that it is not detrimental to safety of patients or markets to have factual information responsibly shared by the people who know that information best. Best, in this case, would include the folks who make said devices.
Our good friends at Shoot Up have a post up on the new MM Enlite sensor. Sort version of the story; smaller, less harpoon like inserter, six day life. The folks at Shoot Up are doing there best to get'm to try'm. Stay tuned to the Tea and Crumpets News Network (TCNN) for a review. Click over to the other side of the Atlantic and read up:
http://www.shootuporputup.co.uk/2011/04/the-age-of-enlite-enment/
http://www.shootuporputup.co.uk/2011/04/let-there-be-enlite/
Editors Note: It may be wise to click out now. All that follows is a pointless and silly rant.
Somehow the brain trust in Regulatory Prohibitions on Communications Division (#NotIntendedToBeAFactualStatement) of the FDA doesn't quite appreciate that information is fungible.
I can hears some alert readers, who haven't had coffee yet, asking, "What the heck did he just say, fungus-able? Information has a fungus, is that like a computer virus? Honey! Do we have Norton Anti-Virus updated? "
Don't get you knickers in a knot. Fungible means easily replaced with an other identical item. Money is fungible. Any one dollar can be use just like the next. Information is easily replaced with... other information. Nothing is as exchangeable as words.
Information that is prohibited by the FDA here is easily replaced with information from other sources. So while MM can't say Jack Diddly to anyone in the U.S. of A. about a new sensor (and for the record it was actually funny to listen to the verbal gymnastics that they went through not to say anything about new products at #MdetronicDAF), we can read our friends across the pond who can say something about the new sensors. The information get fungible-ed... er... something like that.
There in lies a problem: Information isn't as fungible as money.
Now folks, far be it from me to suggest that Bloggers are possibly flawed. (Other ones. Not me, of course.) It seems that instead of having patients rely on some kind of 21st century whisper down the lane it would be better if the vendors could come out and offer comments and or corrections on the misstatement that may work there way into blog-o-sphere mishmashes.
So in an effort to sort out the mess I am making here (a mess that is kinda making my point along the way) there is not a Regulatory Prohibitions on Communications Division at the FDA as far as I know. There are new sensors and meters available in Europe that aren't through the FDA black ops process (Black Ops = #NotIntendedToBeAFactualStatement.) More innovations including CGM enabled pumps are on the way into European markets and simultaneously US regulatory delay. I think we would all be better served if y'all didn't find out about these things solely from 'reputable' unofficial sources like say, me.
Seriously, I know better than to trust me.
All of this is not to say that I do not value the goals of the FDA or a regulatory process. I believe there is great value in safe devices (#IntendedToBeAFactualStatement). I like all parents of kids with T1 diabetes want the best for their kids. That starts with safe. I also believe that efficient markets crave information and that it is not detrimental to safety of patients or markets to have factual information responsibly shared by the people who know that information best. Best, in this case, would include the folks who make said devices.
April 14, 2011
Carb Counts and Beyond
Lesson From Toy Story
Pixar’s Toy Story has had a huge impact on our family. We are fans. Geeky, buy the behind the scenes book about the art of Pixar, fans.
We went to Disney World’s Halloween Party dressed as Toy Story characters. Twice. Well Kelley was Tinker Bell the first year.
That takes me to geekdom and beyond.
All those years ago Buzz Lightyear has some sound advice, to infinity and beyond. It seems like carb counting stretches out indefinitely. That’s not a bad thing. It means looking to a long healthy future and dragging diabetes along - like slink dog’s rear end. Some times it waddles along fine. Other times it come shooting up and rebounds past where you want it.
I think folks in the diabetes universe are light years ahead of most folks ‘casue we read the sides and backs of food packages. We are carb counters. So since we are reading all these labels anyway why not glance at something in addition to the carbs? Just pick one and see if you're getting what you need or too much of it.
Consider salt.
The amount we get in the diet from the shakers on the table and in the kitchen is probably less than 10% of what Joe Schmo eats. And while we worry about the carb counts of restaurant menus they are really burying us with salt too. Have a look at these dishes. WTH like we don’t have enough issues already. http://health.yahoo.net/experts/eatthis/saltiest-foods-2011
Come to think of it the movie popcorn is probably less than health food. That said, the mental health value of movies with the kids last to infinity and beyond.
Pixar’s Toy Story has had a huge impact on our family. We are fans. Geeky, buy the behind the scenes book about the art of Pixar, fans.
We went to Disney World’s Halloween Party dressed as Toy Story characters. Twice. Well Kelley was Tinker Bell the first year.
We were all Zurgs the second time. Yes I made all the costumes.
That takes me to geekdom and beyond.
All those years ago Buzz Lightyear has some sound advice, to infinity and beyond. It seems like carb counting stretches out indefinitely. That’s not a bad thing. It means looking to a long healthy future and dragging diabetes along - like slink dog’s rear end. Some times it waddles along fine. Other times it come shooting up and rebounds past where you want it.
I think folks in the diabetes universe are light years ahead of most folks ‘casue we read the sides and backs of food packages. We are carb counters. So since we are reading all these labels anyway why not glance at something in addition to the carbs? Just pick one and see if you're getting what you need or too much of it.
Consider salt.
The amount we get in the diet from the shakers on the table and in the kitchen is probably less than 10% of what Joe Schmo eats. And while we worry about the carb counts of restaurant menus they are really burying us with salt too. Have a look at these dishes. WTH like we don’t have enough issues already. http://health.yahoo.net/experts/eatthis/saltiest-foods-2011
Come to think of it the movie popcorn is probably less than health food. That said, the mental health value of movies with the kids last to infinity and beyond.
April 13, 2011
DOC, Meet Julie
I would like you all to meet Julie. She is working on a study of adult siblings of type 1s. She could use the Diabetes Online Community's help. So please consider this a very clear and direct suggestion to go to this link to learn more: http://siblingresearchstudy.blogspot.com/
Anything other than a clear and direct suggestion to that link would be bad, so I will not write any folksy self deprecating jokes that would get her fired.
Thanks for your help.
(If anyone asks say some other respectable diabetes site refereed you, it is probably better for her that way.)
Anything other than a clear and direct suggestion to that link would be bad, so I will not write any folksy self deprecating jokes that would get her fired.
Thanks for your help.
(If anyone asks say some other respectable diabetes site refereed you, it is probably better for her that way.)
Kelley Kunik Clashes With Craptacular non Kardashian Kraken
Meat Monster Marketer Mauled
Bloated Burger Burned
I was gonna write about spectacularly stupid food at restaurants. Actually I wrote a bit but friends Kelly’s blog post today is hysterical. Better than what I have in the can so go read it:
Craptacular, Craptacular: The Meat Monster Edition - RELEASE THE KRAKEN!!
Bloated Burger Burned
I was gonna write about spectacularly stupid food at restaurants. Actually I wrote a bit but friends Kelly’s blog post today is hysterical. Better than what I have in the can so go read it:
Craptacular, Craptacular: The Meat Monster Edition - RELEASE THE KRAKEN!!
April 12, 2011
Accu-Chek Aviva Expert - UK
Here is a fascinating little piece of diabetes gear, a meter with a bolus wizard for the MDI crowd. Hop on over the Shoot Up or Put Up for a review of a device I am fairly sure nobody in the US is talking about. I'm betting heavy on the FDA's rules is the reason why.
Anyway Tim's a good enough guy, except for the puns, so here's a link the the UK review, including the image Tim pinched from Roche and I took from him.
Anyway Tim's a good enough guy, except for the puns, so here's a link the the UK review, including the image Tim pinched from Roche and I took from him.
April 9, 2011
Go Watch This. Please.
It is funny.
Kelley and friends at NYU made it. They won 2nd place in a competition with it.
Now there is a who gets the most views on You Tube thing happening.
So please bump up their hit count.
Thanks.
Kelley and friends at NYU made it. They won 2nd place in a competition with it.
Now there is a who gets the most views on You Tube thing happening.
So please bump up their hit count.
Thanks.
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