June 29, 2008

YDMV on Teen T1s

Links
Inspired by Time Life TV ads, I thought I would collect some of YDMV's musings on teens with type 1 and lump them into a "Best Of" collection kinda like the Newbie section.

So links to a few YDMV essays musing on the T1 teen are collected below. For all I know I contradict myself here and that is perfectly understandable we have 3 teenagers, I can't be expected to have a clue.


Talking with Teens
My favorite teen digression: if you expect your teens to talk with you, you need to have invested time talking with them before they were teens.

What is the Magic A1C
A1C isn't magic. If we pretend it has magical powers and stress about it we will transfer our stress to our kids. Teens need rational parents and stressing about A1C isn't rational.

Dr Freud - Endocrinologist and Teen Motivator
A little Freudian motivation helps get through to teens and it funny too.

Children with Diabetes Friends for Life Conference Session Notes
My thoughts on Children With Diabetes' Friends For Life convention, particularly the patents of teen stuff.

Family ties key to youth happiness
Want happy teens? AP & MTV did a survey that can help. Think about it.

Declaration of Independence
I abuse the work of Messrs Jefferson, Adams and Franklin mutilating their original masterpiece to make the point who's diabetes is it anyway.

Tune Up
Check ups matter and at some point the kids learn to play ya.

Tune Up II: Management
Manage what works well. That sounds almost stupid and it would be if we all did it. Tiger has a swing coach, the lesson in that is we can coach the things that bring us good results.

Cheating
What is cheating and more to the point are who is doing it the teens or the parents?

What is Your Goal?
Here is a hint; it isn’t a number.

June 27, 2008

Software that Works?

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Animas apparently the only pump company with crapware. Amy at Diabetes Mine writes about new and improved Omini pod software today. (And has nothing good to say about their software V 1.0.) In that piece, Amy make the point that new pumpers don't want to loose data.

Neither do old pumpers.

I look forward to better software from Animas. I will be sure to look at the Pod People's at Friends For Life next month.

All the more reason for an industry standard data structure. (Calling Bernard) This is our information and we need to press our service providers to serve us.

If we are lucky making it ours vs theirs is v 3.0. I am not holding my breath.

June 25, 2008

From the News Wire: Fun T1 Gluten Free Baking Story

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Sometimes it just fun to read a human interest story. Like food? Here ya go:

http://www.washingtonpost.com/wp-dyn/content/story/2008/06/24/ST2008062401139.html

From the News Wire: IDDP Milestone & micro Pumps

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Y'all know my interest in JDRF IDDP projects. Well here is some news:

Osiris Therapeutics Inc. (OSIR: News, Chart, Quote ) announced that it has achieved $2 million in milestone payments from the Juvenile Diabetes Research Foundation or JDRF for progress made on a Phase II clinical trial evaluating Prochymal, a mesenchymal stem cell or MSC therapy, for patients recently diagnosed with type 1 diabetes. The payments were triggered when Osiris accomplished certain clinical and regulatory milestones including initiating patient treatments.

http://www.rttnews.com/ArticleView.aspx?Id=639523&SMap=1

http://www.businesswire.com/portal/site/google/?ndmViewId=news_view&newsId=20080625005260&newsLang=en

Now it would be a real milestone if we the walkers who support JDRF had some transperancy in what these milestones are but hey this is progress.

Diabetes Mine is reporting Debiotech and STMicroelectronics have announced the first “evaluation prototypes” of the unique “highly miniaturized disposable insulin pump” they’ve been working on for several years.

June 24, 2008

Bring Your Diabetes to Disney

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Check out the new "Your Diabetes Resource" graphic at dLife.

Disney by yours truly.

How cool is that!

Thanks Kerri

From the News Wire: Biotechs and Patient-Advocacy Funds

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Here is some reporting on the kind of relationship JDRF has with its IDDP program. In fact JDRF is mentioned.

It a good primer on the idea of Advocact Funding Research.

Funding geeks - Enjoy

http://www.signonsandiego.com/news/business/biotech/20080620-9999-1n20groups.html

June 19, 2008

Laughing in the Face of Diabetes

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I am going to talk about humor, sorry if this is too solemn but I am very serious about this.

I have a guiding principal here at YDMV and in life, serious and solemn aren't the same thing. Life should be fun and at times silly. Doesn't mean you don't give it your all. YDMV also means sometimes you forget about the fun because of the D and V parts.

Diabetes breads depression. It is well documented that people with D suffer from higher rates of that other D. I would bet cash money to all comers that the parents of type 1 kids have elevated rates too. When it becomes clinical see a professional. Until then see the rubber chicken on the silly side of the path of life.

Yes, I take the D care very seriously; but I see no reason not to laugh about it. In fact I think that one key goal for newbies it to get to the point where diabetes is second in their lives. The point where having a life other than diabetes is primary for a moment and they have made diabetes second. It still there, they are still doing the stuff, but it part of the background habits and rituals of a life.

You know you are getting there when you forget a bolus. It is hard to roll with the punches the first time you forget. But you remembered you forgot right? Or you did a blood test and it was out of whack, but you remembered to test. You are doing the behaviors. Cut yourself some slack. Congratulations on getting back to a life.


I remember reading an essay by John Cleese. It was on the Wall Street Journal editorial page many years ago. Even he was astounded by how much he was paid for funny advertising. His point was to value humor. His example was if he could get you to laugh you would be more inclined to remember and trust the message he was trying to get across. Now I don’t know more serious places than the Wall Street Journal editorial page and this was where I saw someone first separate the idea of serious and solemn.

Being perfectly serious, we need to remember how to care for diabetes, maybe we will do better at that remembering if it is something we allow ourselves to laugh about.

They say laughter makes you live longer. The point of diabetes care is much the same if more immediate, live longer. The key point is to really live, to laugh and love. Without laughter what is life anyway?

There are those who think joking around in diabetes conversations is an off topic sign of a lack of seriousness. To me laughter is not only on topic it is a mandatory part of the topic. It is a sign of life.

The funniest guy I know is my Type 1 son Connor. I hate his diabetes. A cure would be beyond wonderful. If the all powerful diabetes god offered to cure him in exchange for his sense of humor; no way could I even consider it. It would be a cure at the expense of the heart and soul of his life.


I am seriously sorry for the solemnity of this exposition. So here’s a corny joke;

Why did the diabetic cross the road?

To get to the rubber chicken vendor on the other side.

June 18, 2008

Disney dLife

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Check it out I'm published at dLife!
(Yeah I thought they had better taste than that too.)

June 17, 2008

Team Type 1 Completes Race Across America

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Annapolis, Md. — As dawn broke in Annapolis, Md., Tuesday, Team Type 1 completed the Race Across America (RAAM) with a runner-up finish in the eight-person team division of the non-stop, transcontinental race.

Team Type 1’s official finish time was five days, 13 hours and 40 minutes.

Full story at

http://www.ppolnews.com/?id=83269&keys=RAAM-Southerland-diabetes-Annapolis

June 16, 2008

Let’s Dance

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Once again I’ll take a chance

And turn circles in your telephone dance

How long it has been this way I can’t recall

For training and service you may record my call.

The menu choices may chance

Option 3 you may rearrange

Once again I’ll take a chance

And turn circles in your telephone dance

Sadly I know the steps

The nothing’s changed since I first called you reps.

From the beginning it has been the same

You don’t know my address or my name

Once again I’ll take a chance

And turn circles in your telephone dance

My call is very important I’m told

So important I should stay here on hold

I wish we could talk face to face

Without you sending me to some other place

Once again I’ll take a chance

And turn circles in your telephone dance

If there were just someone there

I would pretend that you really care

Talking to a person would be nice

I know we’ll never talk twice.

Once again I’ll take a chance

And turn circles in your telephone dance

June 13, 2008

More on Ping

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Amy over at Diabetes Mine writes about interesting stuff that she noticed at ADA’s diabeties-a-losa.

One was “From Medtronic, a prototype of a “baby monitor” device that connects wirelessly with the
Guardian CGM system. The idea is that parents would purchase a unit they could plug into the wall and place on their bedside table to view and monitor junior’s BG levels all night. The long-distance wireless signal pickup is enabled by a small powerful transmitter that you plug into the wall in your child’s bedroom, or any room where they will spend time. These look like the little charger packs you plug into the wall to recharge your cell phone, without the wires connecting to the phone of course. Theoretically, you could have one in every room in the house so you could always keep tabs on your child’s CGM results. Could be a Godsend! But still in prototype stage. And although pretty isn’t a priority here, this concept was definitely not touched by the “consumer design” push yet. The unit they were displaying in the Medtronic booth was beige and brown and very “hospital-ish” in its look and feel.”

At CWD’s Friends For Life last summer Medtronic had a session where they were using some of us parents as a focus group for some kind of a think like the baby monitor Amy talked about.

There are rumors that I started a riot in the session when someone from MiniMed suggested, in response to a parent’s comment about using information to adjust basal rates, something along the lines of ‘well you know only the child’s doctor can make changes in therapy.’ If suggesting pitch forks, torches and other mob supplies counts, then the rumors may, have have some, small, basis in fact. Regular readers will be shocked.

I don't have have much nice to say about ugly brown boxes. I will leave the professional design matters to Amy. She is brilliant on that issue.
I did write about the focus group in one of my early entries here at YDMV. I likened it to the “machine that goes ping.”

In my mind, an admittedly strange place, the lack of patient focus is the design issue equal to the ugly brown box. Medtronic, Cosmo, Animas, Dexcom, Abbott, Omni and a Partridge in a Pear Tree will all come out with different proprietary versions of a machine that goes ping.Or more precisely a machine that listens to the machin that quietly goes

Apparenly a volume knob on the first machine wasn't enough. No a whole new machine was neeeded.

Sarcasm aside, my point here is our data is our data. Data needs to be the property of patients. These little brown boxes from different vendors need to play nice together. That is: they need to speak the same language. The point isn’t to differentiate commercial interest with proprietary products and lawsuits. Our data should be in an open source standard so whne we invest in tools, they work together.

The internet works because someone, possibly Al Gore, maybe not, made TCP/IP a standard. Standards will help new product gain acceptance from consumers and insurers. The point is better care. Oh and providing better care makes a market bigger. Rising tide? All boats? Laffer Curve?

The real point is so the kids in the sand box can play nice with others. D or non D.

Home of the Deranged

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Home of the Deranged
(To the tune of Home on the Range)


Oh, give me a home where blood sugar doesn’t roam,
And the kids and teenagers play;
Where seldom is heard a diabetes word
And my head is not cloudy all day.

Test test in the range,
Where the kids and teenagers play;
Where seldom is heard a diabetes word
And my head is not cloudy all day.

How often at night when the room isn’t bright
In the light from the glittering meter
Have I stood there amazed and asked as I gazed
If their glucose falls between 80 and 130 mg/deciliter

Test test in the range,
Where the kids and teenagers play;
Where seldom is heard a diabetes word
And my head is not cloudy all day.

Where kids are in range, and ketones aren’t strange
and the parents get to sleep through the night
That I would not exchange a home in the range
For all of the cities so bright

Test test in the range,
Where the kids and teenagers play;
Where seldom is heard a diabetes word
And my head is not cloudy all day

June 12, 2008

Finding Barbara Feldon

Links
Hands up, who watches a lot of reruns on cable?

Don't you wish Get Smart was still on. Well with the movie it probably will be.

What a great show! Interestingly it has a lot in common with diabetes – It is all about Control, KAOS and screw ups.

People who don’t know Jack about diabetes have this impression that blood sugar is easily maintained in a narrow range. Some times I secretly do too.

As if!

Unrealistic expectations of control make for a lot of chaos. Great confusion and disorder follow from the assumptions of the uniformed or worse those who should know better. You don’t have to go far to find either.

Ask about any T1 family about a trip to the emergency room for a sick day. You know; low BG, ketones, the pukes…

I am not saying every hospitals trip goes bad but we all have had or know of trips that make Agent 86 look smart. All that is needed is an IV with some sugar to get the BG up, give some insulin and break the ketones. Nope. BG keeps falling and the ER doesn’t have a clue. We can talk ‘till we are blue in the face, they are the hospital and we are patients (or as they see us, the morons.) As a result we get to deal with KAOS. We may as well be in the cone of silence.

Been there, done that, dread going back.

KAOS Agent: Look, I'm a sportsman. I'll let you choose the way you want to die.
Maxwell Smart: All right, how about old age?

Oh it is so easy to be all smug and think I don’t do stuff like that.

I want our kids to grow and to be all over their diabetes. I want them to manage it like I worry about it. Oh and while I’m wanting stuff, I want them to be nice to their little sister too. (If you don’t know what Joe Solowiejczyk says about this scenario is worth the price of admission to find out.)

If we give our kids the responsibility and trust they can exceed our expectations particularly if we are looking for their successes. There is the key, look for success not failure. We need to offer much more praise than the other kind of feed back. They may slip up, so did Agent 86.

Maxwell Smart: Sorry about that, Chief.

But I can be my worst enemy. I can obsess over numbers, forget that kids are kids and that they need to do kid stuff. Kids stuff includes Easter candy, Trick or Treating, sleep overs, cup cakes and the more than occasional milk shake. The bad blood numbers average out.

Yes - the swings are bad but in the long run, my grown child in therapy ‘cause dad drove me nuts’ is worse. If I get too stupid about the number stuff, I’m going to give them a complex.

Better I deal with my stuff. And (in theory) I get it.

I shouldn’t be one of the people who have the impression that blood sugar is easily maintained. I should know better. I need to try to keep that in mind, particularly as I hand that responsibility over to my kids.

Chief: How can we believe a man who would sell out his friends?
Siegfried: Dumkopf! Who else are you supposed to sell out? You can't betray enemies!

I don’t need to act like I have this impression that managing blood sugar is easy. They will forget bolus. They will under and over bolus. They will miscount carbs. They will forget set changes. They will learn. I need to be OK with that. I need to see that they are being kids first and managing their type 1 well too.

Some days the meter will read 99. I always liked 99. In the mean time:

Chief: Max, you realize that you'll be facing every kind of danger imaginable.
Maxwell Smart: And... loving it.

June 10, 2008

LY/MI Amy

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Amy asked that her follow blogger link this video. So here you go Amy - Love Ya / Mean It

Pumps are not about insulin infusion

Links

Pumps are part of holistically improving the quality of life for families dealing with type 1 diabetes. It is not about the bells and ringers on the pump. It is about how bells and ringers help provide better control or the same level of good control with more flexibility or good control with less effort by those doing the controlling.


It is about integrating the tools of management into a life. Yes having a life.


There is a concept.


Most of T1 families know the day our lives changed.


The pump is one of the tools for getting a life. Others are; the comfort and ease of use of the set, diabetes information management, the logistics of supply chain, warranty, service, aesthetics, upgrades and more.


If someone wants to sell you a pump ask about their, set, software and business practices. Ask them how they propose to help out. How do they deal with 3:00 am. Ask them if a human being will answer the phone at 3:00 pm.


I want better control of basal rates in growing children. That will require stronger integration of BG, basal rates and time than anything I have seen offered yet. I expect to be able to choose my tools, meters, cgms, pumps so it would be a huge help if the industry came up with some data standards.


Bernard Farrell said this about that:

One of the key parts to this (and the thing I've been preaching about for a while) is a unified data standard for diabetes data. Something that all device makers (pumps, meters, CGMS) follow. That would make it possible to actually take data from several devices and combine it into a single package for graphing and analysis.

I'm still hoping.


That Barnard, he's a smart guy. Here is his proposed diabetes data standard. What is significant here is this is a user who would benefit a standard not the standard practice of a corporation seeking to benefit from restricting users to only their proprietary information protocol. That is so outside the box that I doubt there are many that get it.


Better control from improved basal rates made possible by data management. Not one thing about a glossy gizmo on a pump. That may sound hard to sell but then again it is not about selling a pump it is about improving the quality of life.

June 9, 2008

From The News Wire: Insulin production in long-term T1

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Insulin production found in some people with long-term type 1 diabetes

A significant proportion of people who have had type 1 diabetes for over 50 years may still have the capacity to produce insulin, according to results of a study presented today at the American Diabetes Association 68th Scientific Sessions.


http://www.endocrinetoday.com/view.aspx?rid=28711

It is like, Your Diabetes May Vary LOL

Free?

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So one of the replies to Pump hardware Upgrades. (or lets start a riot who's got pitch forks and torches) took me to task. In short the poster felt upgrade fees are just fine. It is a well written free market type reply and I'll do it the respect it deserves and quote it here so more folks get to see it.

Anonymous said...

Maybe I'm just in a grumpy mood, but I don't see what's wrong with paying for pump upgrades. Are you saying that because you paid one time for a device, you should get all future versions of it for free? From the company's perspective, that's not really fair. They spend lots of money to develop new features, and they can't exactly just give it away. Not to mention that the upgrades are still often cheaper than buying a whole new pump (I've only had my first pump for less than a year, so I'm not 100% sure how much upgrades are).

I just find it hard to grasp that people expect to get this expensive technology for free.


I think that is a fair reply and I appreciate the grumpy mood comment for it humor value, heck I a grump myself I understand grumpiness is an artform.

My response is:

Bennet said...

No I am not saying I paid once for the device, I am saying I am paying for it 4 or 5 times. The pump is 5-6 grand and parts are 4-5 grand a year. Over a 4 year period the are making a 20 to 25 thousand dollars in sale revenues.

A hundred bucks a year in upgrade credit in that 4 year deal is 2% or less.

Maybe I am a little grumpy but from the consumers perspective 20 to 25 thousand plus $400 for an upgrade doesn't seem fair.

I don't expect it to be free. I don't expect to pay exorbitant rates either.

Look at the real world of tech devices other than say proprietary medical devices. The life span of devices is well less than 4 years. Hell the cycle span of an iPhone is one year.

Most manufacturers will subsidize hardware for consumables. Look at inc jet printers, cell phones, ISP, etc. They subsidize equipment to get an annuity.

I find it hard to grasp 25,000 in revenue as free. Oh wait we have two kids on pumps so that 50Gs.

Free?

From the News Wire: T1 Blood Test.

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With the ADA Scientific Sessions going on the news wire will be buzzing.

Here is one one on technology for an early T1 detection.

Washington, June 9: A reliable, highly sensitive diagnostic blood test that identifies Type-1 diabetes patients in time for early intervention is around the corner thanks to the development of a new technology.

http://www.dailyindia.com/show/248023.php/Blood-test-to-identify-Type-1-diabetes-on-the-anvil

also

http://money.cnn.com/news/newsfeeds/articles/primenewswire/144273.htm


Other News:
Generex Biotechnology Commences Patient Dosing For Pivotal Phase III Trial Of Generex Oral-lyn For Type 1 Diabetes
Generex Biotechnology Corporation (NasdaqCM:GNBT), the leader in drug delivery for metabolic diseases through the inner lining of the mouth, has commenced dosing of patients in a Phase III clinical trial of the Company's flagship product, Generex Oral-lynO, an oral insulin spray.



http://www.medicalnewstoday.com/articles/110418.php

June 7, 2008

Investing in a Cure.

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I look at contributing to Type 1 research as investing in our kids futures.

When investing it is best to follow ye olde adage, "don't put all you eggs in one basket." In short - diversify your investments. I have a fancy smancy degree in finance. I used to be able to do all the math too. Anyway I can say with some basis in academics that the adage is close to Modern Portfolio Theory (MPT.)

OK I learned MPT so long ago it is now probably Ye Olde Portfolio Theory now.

Readers of YDMV know I watch the business of T1 care. I think there will be a number of incremental type 1 breakthroughs on a variety of approaches that address a different parts of a very complex issue.

I don't think there will be a single 'THE CURE.' I want to believe in a magic bullet, just like I want some 400 share investment to explode and make me financially secure. I know that neither is likely. So I say spread it around. In investing it is called a diversified portfolio. My approach is like buying a mutual fund. I look for a way to give to a broad number of alternatives.

For me a good 'mutual fund' will have a low expense ratio. They will invest in a diversified pool that represents a lot of different T1 issues and approaches to those issues. Like every T1 issue. Your Diabetes May Vary.

For me JDRF is currently my 'mutual fund' of choice for supporting Type1 cures. Like a mutual fund I keep an eye on what they are doing.

Faustman is great and so are some others. I can certainly see putting an egg in those baskets too if you are inclined to weight you portfolio in those directions.

I remain convinced that a diversified portfolio of research is the best approch to the risks associated with any one approach showing promise but falling short.

In all honesty I don't just give to JDRF I invest in some T1 medical companies as well. I currently have a few shares of Biodel and Dexcom. Probably not smart investing (not well advised under MPT) but if nothing else I get to read their 10Ks.

Full Circle

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Connor is moving from elementary school to high school. It is right of passage here, just like it is in a lot of places. He gave his class valedictory talk yesterday. He did a great job.

He looked good too.

A new suit, shirt, tie, shoes, belt, etc… That all was an unplanned expense but it was a good investment. He’ll need a suit for dances in high school next year. Apparently a bunch of his older sister’s friends are expecting him to escort them to dances.

I have to admit the kid has charisma. How else can you explain the senior girls working up dates with a freshman?

Well he did look good too.

This was a particularly satisfying event for us. There he was on the stage being introduced as the valedictorian by the same administration that did everything in their power to kick him out because we insisted that his diabetes care be guided by established best medical practices by his doctors through us.

He would have been too. They had sent a certified letter ten days before the first day of school two years ago saying he and his sister were out. They knew we were arriving back in town that day, we had one of the school principal’s daughters with us in Disney World.

The letter was clear. Our kids were out. Period. Non negotiable. The school administration had called a special meeting with the church board that night, sure in the assumption that the board would affirm their action.

Thank God that this church is not its paid leadership. The board didn’t support the administration. Led by some courageous lay leaders, health care professionalism, in the person of a superb school nurse, was introduced to the school. The first visitor to the nurse was not the daily visits one of our diabetic children but the young daughter of one of the board who stood up for our kids. The irony was not lost on the nurse, us or that board member.

So as I see it providence showed its hand through those board members. Connor went full circle from being out to being his class’s choice as their spokesperson.

Here he is – he looks good too.

June 4, 2008

Pump hardware Upgrades. (or lets start a riot who's got pitch forks and tourches)

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I think the practice of charging for pump hardware upgrades is a crock. Particularly the practice of charging more the longer you have been a client particularly if you buy your consumable supplies from the manufacturer.

I say we start insisting on affinity programs the recognize the value of an ongoing relationship.

We buy a pump. It is a few grand. We buy supplies. That another few grand a year. Yeah insurance pays some of, or if your lucky most of, those costs.

OK Who makes the choice of brand M vs A vs P vs C? We do. Who chooses where to buy all those consumables? We do.

Who pays the fee for upgrades? We do.

Bull.

We send a huge payment up front and a monthly annuity for four years to a company. In those four years they will come out with new and better products. How do they treat us. Stick us with a bigger bill for upgrades the longer we have been loyal customers.

What is up with that?

Even the airlines are smarter than that.

Who gets the frequent flier miles, the sales woman who chooses the flight or her company. The system is designed so she does. The company rewards the decision maker. The more she decides to use one airline the more they reward her.

Airlines are about the lowest level of customer service satisfaction in the know world. How can they get that the more the consumer brings to the relationship the more good stuff they get and pump companies don't?

I think we should get some kind of frequent pumper miles. Some kind of an upgrade credit for the amount of disposable sets and stuff we buy.

Then come renewal time we would already be using the latest and greatest and wouldn't feel the need to shop around.

The difference between the airlines and the pump folks is simple. Airline passengers can change airline every trip. The airline has to try to compete every day.

Big pharma, compete, your kidding right? They have a 4 year sale cycle.

June 2, 2008

EZManager is worse than I thought - don't use it to upload.

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I don't think it comes as news to anyone that I think Animas' EZManager is junk. After all one of my recent Blog entries was a copy of a letter I sent them two years ago about it.

I have been trying to get the guy, Dennis, who is said to be in charge of EZmanager on the phone but he hasn't returned any of my voice mail messages.

I'll let y'all know how that works out.

In the mean time if you need to upload pump settings - DON'T DO IT. I just tried it and it didn't upload basal rates into the new pump properly. Instead of uploading the basal profile I had just saved from the old pump. It up loaded the first rate (midnight) and set the pump flat at that rate all day.

Totally unacceptable.

I entered the basals by hand. Checked a few times. Enering them by hand is a pain in the butt. Not as much as the software that is meant to do it.

I can't recommend this software to anyone. If you do use it be very careful in checking your settings. There were others, significantly less important than basals the didn't up load properly as well.

I like the Anamas pump, I like the people, EZManager is such total crapware that I think unless it is changed dramatically we will need to shop around when the warrant is up.


7/1/08 Update - A new version is in the offering. I have no idea if it is any good. see: http://ydmv.blogspot.com/2008/07/from-news-wire-animas-announces-ping.html