October 31, 2010

Reasonably Assemble

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We went to the big rally for Sanity and or Fear on the Mall in DC 10/30/10. We were there for the fun and showing up for reasonableness seemed like a good idea.

We stayed over night at Mrs. YDMV’s uncle’s planning to take the Metro in early. There were six of us, Mrs YDMV & I, two of our kids and two friends of our kids’. One of those was technically a boyfriend. When ever I, as a dad mention a daughters boy friend, people ask, 'How do you like him," as if it makes a difference. Well I like him very much. He is great company when ever he is around, not that my opinion makes any difference. 

Oh yeah and just because the rest of us were going that rat bastard diabetes rallied for a little fear. Connor woke up slow, and buy woke up I mean could almost stand up but was totally incoherent. 33. His sister held the juice glass to his mouth and two cups of OJ and a Crispy Cream donut later he was 30. Yippie. More juice more donuts, a half a coke and more time and he started coming up.

A little note of advice: Connor was too incoherent to tell us where his meter was. This is why I always have a redundant one someplace where I can find it. At home and when we travel. Redundancy is a reasonable diabetes precaution.

We headed to the Metro. We got on face outside the city, in fact the second stop in from its distant suburban terminus. It was a little past 9:00. The rally was at noon on a fall wekend . The train was standing room only. I could comfortably step on but was just at the door.


By the time we reached downtown I had squeezed into the center of the car sharing a little flesh to flesh contact with strangers. The train ride was a interesting sociology study. Those on the train, sharing a little contact with strangers, were fairly convinced there wasn’t any more room as we pulled into each successive station full of people wanting to join us. There was a general murmur of discontent as the new folks crammed in convinced that more room for contact was fine. At the next stop the former newbies were openly resentful of the new newbies. Rinse lather repeat.

We were happy to get out of the Metro and up into a cool sunny autumn morning in DC. Few cars, lots of people on foot. Near the mall Yahoo was handing out little plastic megaphones, but using them seemed a little unreasonable, others were handing out stickers and rally towels.

There was a sizable number of folks already there. We set up some chairs because sitting on the ground was a completely unreasonable expectation for an old guy like me.



The group kept building over the next few hours and by the time the thing started we we probably about at the back of the first third of the crowd. There were people on the Mall. People on the steps of the museums along the Mall, people in trees and people on top of the port-a-potties between the Mall and the museums.



Much like the sociology experiment in the trains the lines of personal space were tested and later arrivals were convinced there was space between those who has arrived earlier. We have a fair amount of experience with this phenomenon at Disney World Parades. Our initial territorial stake was made with folding chairs and blankets and was probably an over estimation of our real needs for space. We made reasonable concessions and were were perfectly comfortable.

Another interesting social media experiment played out on the Mall. That many people with mobile devices overwhelm the networks. Nobody’s phone worked. Tweets became the signs those who felt compelled to communicate shared. The rest of us lurked and occasionally actually talked with each other without a handset.

The day was a total joy.



Outstanding music and humor conveyed two main themes. First were perfectly reasonable points about media fear mongering that creates virtual crisis out of political minutia. The second and possible more prevalent punch line promoted religious tolerance for all, and specifically for Islam.

It was a nice day on the mall to peacefully assemble at the seat of our government, poke fun at those who seek to limit the free exercise of religion, expect more discerning from the media, speak freely and for some climb port-a-potties. In short it was a first amendment fest.

The trains were packed on the way out too.

Oh and Connor cut back his overnight basal rates and put on a CGM to get some better overnight data. That seemed like a reasonable response to some a scary low.

October 25, 2010

It is the T1 Community of Course the Monkey is Conducting

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My son was invited to walk with friends from Friends for Life. So was my daughter. They were asked to different walk locations. That's what happens when you have lots of friends. That is a good thing, NO it is a Great Thing.

So I took the boy well know for his parking prowess in the City downtown and Mrs. YDMV took the girl to the Bucks County Walk.

I got this clip of the team my son walked with reaching the finish and breaking out into song. As you can see kids do that in real life not just on Glee. In real life they don't have auto tune but they do have a monkey conducting.



I may have to add break out in song conducted by a guy in a monkey suit to this bit in the disclaimer: If you or anyone you know is a member of a Type 1 family you know they are amiable but stressed out folks who are happy share their experiences with others who "get it," a phrase that here means poke, pee, inject, inspect, infuse to insanity.

I swear I didn't even see the guy in the monkey suit until I showed it to Delaney back home. I did get to see Kelly, Grace, Lucy and Penny and a lot of other wonderful folks too.

So for all the seriousness of living with type 1 I think it is clear we are not all that solemn.

Just look at all those people! To all of y'all who walked somewhere, anywhere Love Ya / Mean It.

October 19, 2010

Read Riva

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Great minds think alike. OK, in my case great is probably over reaching so how about, 'Aspiring minds read the same stuff for inspiration.' That is my way of saying, “Yeah me too!” to Scott Strumello’s words of praise for Rive Greenburg’s pieces on the DRI.

Riva has two wonderful pieces up at the Huffington Post on the DRI and research to find a cure. Like Scott I encourage you to go read them and will tempt you with little bits that I found wonderful:

From Part 1 a frank and honest the answer to how long will it take to find a cure:
Q ... 38 years ago I was told we'd have a cure in five to 10 years back then. Are we any closer?

CR: We are much closer, there's been more progress in the last five years than the preceding five decades. It won't happen tomorrow, though, and I hate to over-promise because so many people have been disillusioned. But I'm still working with the same enthusiasm and determination as if the cure will be within the next three years.
From Part 2 a touching look into the feelings of a researcher

Q: What's your biggest challenge?

CR: Besides funding, it's the blocking of a physician or scientist when he has the ability to cure one individual. The soldier in Afghanistan is a perfect example; If I were following existing rules to the letter, I really shouldn't have done the transplant because I didn't have the needed approvals in place at the time.

In the current regulatory environment, if you have a patient with diabetes or cancer you can only treat using randomized, evidence-based medicine, or findings from a major trial.

I went into medicine to be able to help one person at a time while concentrating my efforts on developing a cure for millions.

Scott and I found different parts of Riva's articles quote worthy. I hope you will go read them both and share the parts that you find quote worthy. I look forward to seeing a lot of links back to Riva around the DOC as we are all inspired by her articles on DRI's work.

As a parent of two type 1 kids my thanks go out to Dr. Ricordi and the DRI. As one of the many who hope to benefit from his work I just want the guy to know it is OK if he takes a little time to go fishing and de-stress a little (A reference to part 2. You'll have to read it yourself.)

LY/MI Doc.

October 18, 2010

theBetes:NOW goes Psychedelic

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Friends for Life as the Woodstock of Diabetes: Peace, Love and Insulin a short featuring Joe Solowiejcyk.


October 13, 2010

Unfortunate Events

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When the kids were medium sized we loved reading Lemony Snicket’s Series of Unfortunate Events. They are delightfully unpleasant. So much so that on one trip to Disney World the boys were excited to take a midday break from the parks to have a chapter or two read to them in the hotel while their little sister napped.

One of the catch phrases a bully in those books uses is “Cake Sniffer.” The series of unfortunate post lifting events that I wrote about yesterday took an amusing Lemony Snicket like turn shortly after that post went up. The Cake Sniffing sight I wrote about in Yo Ho yesterday lifted Yo Ho in its full glory and re-posted it. Now that is just moronic.

However their encroachment upon one of Kerri’s post about her child is more than copyright infringement. It is an obscene intrusion upon the innocence of a child I hold as dear as a niece. Copying that post was a lot more than moronic.  Following Kerri’s lead of more polite public discourse I will refrain from the short descriptive words that communicate the intense guttural repulsion I feel for that intrusion.

I have been asked in emails about this site. I don’t link it because beyond giving it any sense of dignity links to a site are a component of search engine ranking. These unfortunate Cake Sniffers don’t warrant that cyber recognition.

I did however send a fax and letter of notice of copyright infringement to the Cake Sniffing site’s host. I also forwarded a copy of the pertinent information needed to file a similar letter to the copyright holder of SixUntilMe.com. A recipe for filling a complaint as it were, in case she didn’t have time to look it all up. (Hey Web crawler! See that link there? One more in the thousands that reference SixUntilMe.com.)

If anyone else needs said recipe to whip up an infringement notice to these diabetic cake sniffers drop me an email bennet (at) YDMV (dot) net.




YDMV Note:
As I was typing this bit up, my fax spawned the following email: 

Hello,

This message is to acknowledge receipt of your DMCA complaint.

We may respond to your notice by removing or disabling access to material claimed to infringe, and/or terminating users of our services. If we remove or disable access in response to such a notice, we will make a good-faith attempt to contact the owner or administrator of the affected site or content so that the owner or administrator may make a counter notification. We may also document notices of alleged infringement on which we act. As with all legal notices, a copy of the notice may be made available to the public and sent to one or more third parties who may make it available to the public.

In order to ensure that copyright owners do not wrongly insist on the removal of materials that actually do not infringe their copyrights, the safe harbor provisions require service providers to notify the subscribers if their materials have been removed and to provide them with an opportunity to send a written notice to the service provider stating that the material has been wrongly removed. [512(g)]. If a subscriber provides a proper "counter-notice" claiming that the material does not infringe copyrights, the service provider must then promptly notify the claiming party of the individual's objection. [512(g)(2)] If the copyright owner does not bring a lawsuit in district court within 14 days, the service provider is then required to restore the material to its location on its network. [512(g)(2)(C)]

If it is determined that the copyright holder misrepresented its claim regarding the infringing material, the copyright holder then becomes liable to the OSP for any damages that resulted from the improper removal of the material. [512(f)]


Regards,

Network Security Administrator

October 12, 2010

Yo Ho

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One of my blog post was highlighted on a site with a number from Kerri’s, Caroline and Cherise at Diabetes Daily, and some other fine DOC folks. It would be an honor to be in such outstanding company if it were not for the whole walk the plank nature of the thing.

Highlight is a more than kind, is little deal is more like a wholesale pirate job. From what I can tell the site has content that is noting but posts lifted from other, smashed onto a blog that exist to serve up ads from DoubleClick oh and some links to books at Amazon. The site takes privacy fairly seriously in that whoever set the thing up keeps their identity well hidden.

They say imitation is the sincerest form of flattery. I am not so sure. Not so sure this is imitation but that aside I feel more flattered by the friendship and welcome that the DOC gives in abundance than anything imitation could offer. I would be easy to focus on feeling taken by this experience but that would miss the point. The real point is my life has been greatly enriched by our community. In no small part by all the people who like Kerri lead lives that are not defined by diabetes but in part explained by it.

That explanation is that through our shared experiences we have learned to honor others struggles with and beyond diabetes without simplistic formulas. We have learned to be more human. The serious crime here would be if parasitic sites discourage people from participating in the online community.

Our community is important so important that it attracts charlatans. Perversely that is high praise.

October 11, 2010

The Circle of Life is a Small World

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As a parent, I have tried to find roll models. People who exhibit the attitudes, behaviors and character I hope my kids well grow to share. As often as not it is for my benefit. I like to know what influences parents used to helped these folks get where they are so I can shamelessly copy those practices.

I started when the kids were really little by ask the parents of those of my peers who I respected how they brought up families they way they did. Side note here, if you really want to flatter someone ask’m something like, “So your kids are what I want mine to grow up like, how did you pull that off.” I completely tongue tied a friend’s mom asking that. It was awesome. Surprisingly or maybe not the responses were very similar. Practice faith, put the family first, eat meals together at the table, do stuff together.

Not being particularly original I employ the same strategy as the kids grew. When the kids showed interest in studying the film industry or criminal justice - one stop shopping with a friend who has a masters on the later and a movie in wide release this weekend. Curious about growing up with type 1. There are a lot of you out their who’s brains I have picked.

I didn’t stop seeking roll models when the kids were little. A few years back, at FFL, Delaney and I had a very nice conversation with professional bike racer from Australia. She was a glorious roll model for a ‘tween girl, outgoing, confident, a professional athlete, type 1, personable etc. Her name was Monique Hanley.

Fast forward a few years. The kids are getting bigger, so I start looking for people I can who can I learn from as motivation for my soon to be young adult type 1 kids. I met a local woman who runs marathons with type 1. She spoke highly of a group in Canada who do all kinds of great stuff. The leader of that band of crazy Canadians was interviews over at DiabetesMine, one of her roll models in starting the crazyness, Monique Hanley.

So I don’t know which Disney song to sing here. Is it “It a Small World” when a woman from Australia has as a trans-continental influence or is that Just the “Circle of Life” with diabetes?

Either way here’s to Monique.

October 6, 2010

Change Just One Thing.

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Kerri is an inspiration. She has a lovely bit about changing just one thing about diabetes. Go Read it.


I'm curious - what kind of marketing wiz asks a question like that? It is as if they may, if they get an extra latte, find the energy to make just one little change in the diabetes universe but don’t know what that should be.

How about the medical-industrial complex making continuous change.

They could start by staying current. Yes this would mean the FDA approval process would have to keep up too.  But every time some industry dude points a finger at the FDA for being too slow the other four are pointing back saying. "Hey industry! How slow were you in bringing the application to the FDA?"


I have heard industry people say they were waiting for clarity from the FDA. Great business plan, if you would be so kind as to tell the diabetes to wait too that would be just peachy. In the mean time we are still living with it and tools stuck in a prior time.

For example, the desktop software that supports our pumps is at best a warmed over set of macros built in a Microsoft Office application. It shows that it was originally developed in Access even if it now runs in something else. To my mind it lacks any real sense of being a useful tool for managing diabetes.

As if to demonstrate its marginality the pump manufacturer no longer includes the software in a new pump start kit. They tell me that too many were being thrown out so they figured they wouldn’t go to the expense of including it with the pump. They will support patients with a free copy if they fill out a form. Call me crazy but wouldn’t it be a more effective means of supporting clients to make the software so good it was helping them sell pumps?

It would be awesome if patients could choose tools that work together to support their lives with diabetes from what ever vendor provides the best tool to support the patient's particular life style. If the meters and pumps and CGM all spoke a common language we could. Instead data formats are used to separate devices by brand. This tower of technological babble hinders looking at the various components of care as interrelated parts of the balance of life with diabetes.

Let me be clear. That data is ours. We use it to manage lives with diabetes. It isn’t your marketing tool. It is patients' health.

It would be great if the software and devices stayed current with the technology in our homes. If it worked on the PC or Mac of our choice with the current operating system. For the record compatibility isn’t running and old copy of Windows XP booted on an Intel Mac. Lots of us use mobile devices too - catch up.

All that is indicative of the just one thing I would like to see changed.

It isn’t technology.

It is how industry sees patient lives. Patients live dynamic lives. We don’t stay in one place. Kids with diabetes grow. Children become adults. Women with diabetes have babies. Lives change. One size doesn’t fit all. One change isn’t enough.

Keep up.