From Brigitte

From FatCatAnna

Jesse  Alswager who has had diabetes for 10 years since the age of 3 made a video for a school project back in January of this year.  He has been an inspiration to many young diabetics (and older ones like myself) and between all of that, he is involved in both music and sports. His advocacy has brought him to Washington, D.C. where he spoke before Congress and was honoured for his stem cell research advocacy by Governor Doyle during a State of the State Address.   

Sadly he passed away on February 3rd, 2010, shortly after the video was made due to complications of DKA (Diabetic Ketoacidosis).

It has shocked alot of PWD's, as Jesse and his Mum, Michelle Page-Alswager were (and still are) very involved in the diabetic community.  They raised money for finding a cure for diabetes, through JDRF Ride For Cure and various other organisations.  They basically declared war on diabetes!  Eventually Michelle got into cycling,which proceeded to her becoming a triathlete, then onto Ironman. She came up with the idea of a Type 1 diabetic triathlon team, and a documentary about how they could train for and complete an Ironman started off Triabetes.

To read more about Jesse go to Michelle's website at - http://triabetesdocumentary.blogspot.com/

Jesse you will not be forgotten - we will continue to declare war on diabetes and find a cure!

From FatCatAnna

I don't watch daytime TV that often as I'm a working stiff, but yesterday I recorded the Oprah show - which was all about diabetes.  I had read during the week from other PWD bloggers that they were abit disgruntled that probably the show would dwell on Type 2 diabetes.  That doesn't bother me, as I still clump all the different versions of diabetes as being one, we all are having to deal with living with diabetes whether it be with just pills/diet/exercise/insulin.  Below is a comment that I posted at one of the many diabetic forums I belong to which I find seemed to be highly critical of how Oprah / Dr. Oz brought it to the public viewers ...

I found it pretty good.  You have to remember, it's aimed at the average viewer, who may not have much knowledge of diabetes, and what they have is usually based on incorrect info (e.g. you get it if you're fat, yadda, yadda, yadda). Because of it only being an hour show (with LOTS of ads - not used to day time telly) - they could only really cover the basics, but I personally felt the info put forth was well done.  I think it helped my husband understand about what sugar in our systems does to us with the video that Dr. Oz showed on how the food breaks down in our bodies. Seeing how the "shards of glass" aka "sugar" go thru' our blood vessels if it's not been converted correctly due to our pancreas not squelching out the juice made me cringe (I will never look a broken glass in the same way again).  It didn't help that I was sitting down nibbiling on cookies and an espresso (with sugar) for my evening snack.  Yes, I had taken insulin to cover the carbs aka sugar - so hopefully less "shards of glass" will enter into my blood stream, but still I felt abit uneasy.

What got me crying, and I'm started to well up here as I type thinking about it, was Laureen, a 44 year old Type 1 diabetic who agreed to be on the show (bless her heart) telling us what bad management of diabetes can do to you (and she is a nurse).  It was when Dr. Oz started to remove the bandages from her legs that I really started to sob uncontrollably, and I'm not one to cry that often (I think diabetes makes some of us tough to emotions).  Besides that ordeal, she is also on kidney dialysis, which is something that all diabetics hope to never have to face.   It was so hard to watch, and of course, because of of a PWD friend of mine, Lois, having her leg amputated a few days ago due to mismangement of her diabetes (and she admits she f##ed up), it hit me hard.

So, yes, some of you Type 1's maybe disappointed that not more info was done on " our " type of diabetes, but as we've always known, we are a small majority. In the 60's/70's when I was diagnosed Type 1 was only about 1% of the diabetic population - now it's 10% - crikey.

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Just a footnote - the video link above of Laureen may not be for the faint of heart.  I know I found it very difficult to watch as Dr. Oz removed her bandages ... BUT ... it might  jolt you into realising how serious diabetes is and how if left uncontrolled can lead to life threatening conclusions.  

From dorisjdickson

This article in yesterday's edition of Endocrine Today makes me scratch my head.  First and foremost, had this study been conducted in 1976 in the US and not in Germany, I would have been included in these statistics.  Given that, why did they spend money on this?  What do they hope to attain by learning that ketoacidosis in juvenile onset diabetes is frequent?  Do they think somehow they can prevent the phenomenon? 

I don't think a high incidence of ketoacidosis in true juvenile onset type 1 diabetes diagnosis is particularly preventable.  Why?  Let's start with the fact that the progression of the disease normally goes from 0 to 100 mph very rapidly.  Then continue with the fact that kids normally only go to the doctor for a routine annual physical at most annually.  Then there's the fact that glucose and c-peptide tests are not part of a physical. 

I would expect that glucose testing due to the high incidence of type 2 might be added sooner or later but the real indicator of juvenile onset type 1 is in insulin production and beta cell destruction which would more likely be seen in a c-peptide test.  When does beta cell destruction start in earnest?  Is it consistent? 

There's no way anyone is going to mandate a c-peptide test at a routine annual physical AND force insurers to pay for it primarily because the incidence of true juvenile onset type 1 diabetes is so low relative to the total population.  They are truly more concerned with the incidence of type 2 in the total population.  No big surprise - higher incidence means higher cost means more interest in preventing problems. 

Why do I think that a standard A1C, random glucose or glucose tolerance won't catch juvenile onset type 1 before ketoacidosis?  Because unless someone gets real lucky it happens too quickly for a routine annual physical to catch.  And unlessl you've got a PCP who is really on his/her toes the early symptoms are pretty darn subtle.  That's if you go to one 'just cause.

I remember being particularly thirsty for about 3 months prior to my diagnosis.  But it was hot and I was 12 and spent a lot of time outside.  I was active.  So, thirst by itself just wasn't going to stand out by itself.

Then there was the hungry horror stage which quickly ran into the weight loss stage (10 pound loss of a 72 pound child in one week) which only started one week before diagnosis.  The final stage was what we know as the ketoacidosis stage which to the normal average bear initially resembles a flu.  And who on earth takes their kid to the doctor immediately upon flu symptoms?   Who can get an appointment immediately at flu symptoms?  Two days later ... ya, well that's what got everyone's attention. 

The stench of ketoacidosis, the lethargy and being totally out of it stage.  That was it.  Apparently, I couldn't even walk because I remember my mom carrying me to the car. 

But I had only missed one day of school at that point.  It really is fast.  My birthday was Thursday.  I went to school on Friday.  We moved on Saturday.  I went to a Halloween party on Sunday.  I was notably drinking soda I didn't drink and eating much more than normal.  But again, we had moved on Saturday and I wasn't the type to wait around for someone to unpack my belongings so I was active - translation - hungry.  Who knew?

Monday was All Saint's Day and we had the day off.  I was sick.  My sister was getting me tea.  But again, only it was only day 1 of being sick so who would take the kid to the doctor's.  I'm a kid; I get sick.

Tuesday was the difference.  My sister went to school; Mom went to work and she did not like what she saw when she got home so off to South Shore Hospital she carried me.  Thanks Mom.  Thanks South Shore Hospital.   Thanks Banting and Best.  I felt better in short order.  I remember being quite perky on the trip to the Deaconess/Joslin. 

I do not think my diagnosis could have happened much more quickly.  The early symptoms resemble nothing important, nothing notable.  I had seen commercials pointing out the symptoms and had mentioned them but to repeat - being thirsty during the summer and being hungry when running around is just not remarkable to the average bear. 

So do we demand that extensive tests be run on kids at routine annual physicals just in case?  Urine testing as they do in parts of Tokyo (mostly catching type 2)?  Do we demand A1Cs every three months which MIGHT pick something up?  Will more education of symptoms to parents and PCPS/pediatricians help? 

See I don't think so.  Paranoia is expensive and not all the helpful considering the relatively low number of juvenile onset type 1 diagnoses per year.  (I'm having trouble finding a total number of juvenile onset type 1 diagnosis.)  A 1999 study employing genetic testing and CONTINUOUS beta cell damage testing results in "less severe disease presentation."  Not the word "continous."  There is certainly nothing cheap about genetic testing and there is nothing cheap about continuously looking for autoimmune destruction of beta cells thus rendering the concept unrealistic.

I just don't think there is a simple, cost effective answer to preventing ketoacidosis.  I'm sure parents will disagree with me.  I hear screaming from the rooftops.  However, if this were your business and you had to determine cost benefit, what would it show?  Not much benefit.  The benefit is emotional and, right or wrong, that just doesn't (usually) count in business decisions.  So, in this world of capitalistic, shareholder or taxpayer owned insurance companies, it's not likely to count here either.  Sorry.

Doris J. Dickson

From FatCatAnna

   Well, before I start on my latest bit of dribble to you - the good news on my insulin pump with the delivery message on the weekend - has all been sorted out.  Animas was very surprised that there had been no help for me when I called (they have taken note of what happened).  They were even more surprised I was able to sort through the problem on my own - since usually it is a problem that must be dealt with through their tech department.  They told me I should apply for a job at Animas here in Canada.  I may just do that - but now that I'm starting on another adventure in my “Jill of All Trades " type of work I do - I'm wondering .... "How many jobs can a person have?".  I do love a challenge though - makes life more interesting - and keeps me on my toes.

   My latest adventure in life is going to start next Monday - working in a quaint little cafe in the village of Pointe Claire here in Quebec a few days a week - called Cafe Marmelade. The owner, Eleanor Arless, a Type 1 diabetic like myself, offered me a job the other day when I brought a friend in for a coffee and nibbles.  I am so excited since I love to bake  and create healthy wholesome food for my family and friends.  Now I can learn off of a pro - since she beats me hands down with her tasty breads and sweet baked treats (have sampled a few)!

   Besides working there - I'm going to be helping Eleanor with learning how to carb count - so she doesn't experience all the ups and downs she's been having with her BG's (not fun if  you're wielding a sharp knife at the time).  She isn't very aware of how much insulin she requires for the amount of food she eats which I can relate to.  About 5 years ago - I started to figure out how much insulin I required to shoot up with in order to cover the food I was eating.  Now with the pump - because it's a more precise way of giving insulin - I had to tweak my skills of carb counting a little bit more. Along with the handy programming that I have set up in the pump I’m all set.  Remember though you are still the brains behind what amount of insulin goes into your body with the pump – it only “suggests”.  It was abit annoying in the beginning having to know the "exact" amount of carbs I was going to inhale - but in doing so - it's helped me to have fewer lows - and not do the roller coasters ride of shooting up high.

   One thing Eleanor has recommended to me - for treating hypos - is to mix maple syrup with some water. She vouches that it doesn't rebound afterwards shooting her BG up high.  I'm going to give this a try next time I have a hypo here at home (who carries a jug of maple syrup with them in their purse?).  I may have to buy maple syrup from her since it's a wee bit expensive due to supply and demand.

Bon Appetite!