You know how challenging it is to live with diabetes. Those days when it seems nothing is going right. You can't control your blood sugars, then you get a bleeder when changing an infusion set and your meter runs out of batteries at the worst possible time. The countless times when the possibility of complications weigh heavily on our hearts. The frustrations of not being able to eat something without first having to do some math.
You get the picture, you know the story.
It's hard to see any positives to diabetes, but they do exist.
Given my love of carbs, if I didn't have type 1 diabetes I probably would have eaten myself to death by now. Despite diabetes I've been able to do pretty much anything I want. And diabetes has led me to things I wouldn't have done without it.
So I see joy is some aspects of diabetes. And it seems I'm not the only one.
I got a copy of Bob Hawkinson's excellent book The Joy of Diabetes, and I've read it twice. I plan to try and do this every other month.
Bob's message is simple but important. Diabetes is serious, but if you take care of it properly then you can have joy in your life despite the big D. His book is also a great high-level overview of type 1 diabetes, outlining what's important without drowning the reader in details. Excellent reading for diabetes newbies.
His book starts six points for a 'Life of Joy'
Accept the disease
Understand the disease, as much as possible
Manage diabetes
Be there for folks who need you
Remember to laugh at myself from time to time
Relax and take charge of my life
For me, this was a quick read. It helped me focus on some important points. I especially liked the idea of ensuring that I will be there for others. The best way to do this is to take charge of my diabetes.
I like the colorful drawings and I especially liked the slightly larger type face. Some might think this makes it more like a children's book - it's certainly approachable enough to be read by teenagers. But this choice of font makes it easy to read and is probably even better for folks who may be struggling with eye problems.
This may not be for everyone, but I see the book (and some magnets he kindly sent me) as great parts of the toolkit I use for living with diabetes. Joyfully.
Etiquette is all about being polite. It's also (for me) is a hard word to spell. I need to practice writing it some more.
Have you ever sat down to eat, you're about to put a bite of food into your mouth and a colleague says "I didn't know you were allowed to eat that"? I've one specific co-worker that's probably said that to me several times in the last two months. And boy does it make me mad. I'm planning on sending her a copy of this nice diabetes etiquette card(PDF) that's been put together by the folks at the Behavioral Diabetes Institute. The card offers 10 suggestions expressed as DOs and DON'Ts. For example
DON’T look so horrified when I check my blood sugars or give myself an injection.
DO realize and appreciate that diabetes is hard work.
DON’T tell me horror stories about your grandmother or other people with diabetes you have heard about.
They're all good points and they may stop you from strangling that person who just won't stop giving 'helpful' advice.
The trials sound very interesting and it looks like they've made a lot of progress. It's also good to see the interest in diabetes that has been generated due to the artificial pancreas project.
This is because of the recent NIH, FDA, and JDRF 2-day collaborative workshop on the Artificial Pancreas. The sessions were recorded. You can see the video for day one here, and for day two here.
The agencies and people involved seem to be taking a very pragmatic approach to combining the individual technology pieces to this puzzle. All of the required pieces of hardware already exist, the hard part is getting the software to work so that insulin and blood glucose controls can be automatically controlled. Thankfully those involved seem to be working to get a solution that's usable rather than a 'perfect' device. Hopefully the early prototypes will quickly inform folks about ways in which the overall approach can be improved.
The CBS piece mentions that the artificial pancreas may be available in 5 to 10 years.Because of approval and regulatory issues, I would guess this is closer to 10 years out. I hope it's a lot sooner than that.
If you're a regular reader, you'll know I've been offline for a few weeks, this was for good reasons. We visited Ireland for a big family reunion and had a wonderful time.
I'm finally back on East Coast Time, but still missing all of my family in Ireland (including my darling grand-daughter) and the wonders of beautiful Kilkee in County Clare in Ireland. I promise to post a few pictures in the next fortnight or so.
In the last two years I've raised funds for Dr. Denise Faustman's research into a cure for type 1 diabetes. This year, the Bike the Miles folks don't have an event as they their fund-raising goal. So I've been preparing to take part in a triathlon and use that as a fund-raising opportunity. For me, that's a big challenge, even if this isn't an Ironman-type triathlon.
So on Saturday September 6th I'll be taking part in the Hyannis Sprint 2 Triathlon on Cape Cod. The triathlon has a quarter-mile swim, 10 mile bike ride and 3.5 mile run. If you're going to be there, I'd love to say hello.
I'd like to challenge you to sponsor my triathlon so I can raise more funds for Dr. Faustman's research. In previous years I started fund-raising in the spring, so I know it'll be a stretch to get more than $3,600. But that's my goal for this year: $100 for each year I've had type 1 diabetes.
I'll do the sweating and you just have to write a check of any size. (If you're a US taxpayer the amount is a charitable donation.)
Your check should be made out to Massachusetts General Hospital with Dr. Faustman Type 1 research in the memo field.
You can either send it to me at my P.O. Box Bernard Farrell P.O Box 937 Westford, MA 01886
Or you can send it directly to the hospital at The Massachusetts General Hospital-East Attn: Lynne Murphy Building 149, 13th Street, Room 3602 Charlestown, MA 02129
If you're doing this to sponsor my triathlon, please send me an email (bernard.farrell@gmail.com) letting me know how much you sent to Mass. General so I can track the level of sponsorship I get.
As always I'm grateful for any support I get in this effort and I do plan to have a page acknowledging all the support I get (let me know if you don't want your name on this page).
The update states that, if you hear a crackling noise or resistence when depressing the plunger of the fill syringe, you should discard the pod and use a new one - using the defective pod could result in under-delivery of insulin.
You should contact Insulet if you've had any problems.
While at the New England diabetes picnic last weekend I talked with two people who were using OmniPods. They're both very happy with it and in real life the 'pod' doesn't seem to present too many problems.
I'd love to try one out, but I think I'm going to wait until the unit's size (form factor) is smaller. Hopefully Insulet is already working on that.
ABC News (GMA) confuses type 1 and type 2 diabetes - again
Today's Good Morning America program had a segment on cutting the risk of Type 2 diabetes.
But they forget to point out exactly WHICH type of diabetes (there are 3 main types) they were talking about. Has ABC forgotten to check even the BASIC facts?
It seems that US news media constantly makes the mistake. Type 2 diabetes is the most common form of diabetes but it's NOT the only one.
Folks, like myself, with type 1 diabetes are then told by folks that we are to blame for our disease. Or that we can 'prevent' it by simply exercising.
What's even worse is that they tried to cover up their mistake by changing the associated text piece to make it clear there they were talking about type 2 diabetes.
I wish they'd consider doing a real piece on type 1 diabetes.
Maybe they could talk about how this disease is being treated in essentially the same way it was when insulin was first extracted in 1922. Or how this disease is sometimes treated as a disability by companies when they're hiring, but then not treated as a disability for the purposes of the Americans with Disabilities Act.
I'd love to see Good Morning America actually talk about the mistake they made and then combine it with a story about type 1 diabetes and its tolls and costs.
Come on ABC News let's have some real coverage of this serious disease.
At the end of April I posted about the Dexcom Open Choice model. I was fortunate to get a loaner model for a short while. Since then I've been waiting impatiently to get the software update.
Dexcom had been offering a new system for an upgrade price. But I really didn't want to spend even more money on my third system upgrade in 15 months. Yes each of these have introduced useful new features, but knowing that they were going to allow you to upgrade for free made me want to wait. Apparently the delay was in getting FDA approval to allow this type of home update for an existing device.
Last week Dexcom contacted me and asked me to try out their software update process. They sent me two CDs with a new system manual and a new version of their DM system software. The upgrade also came with several pieces of paper including an important letter from Dexcom marketing with several steps that you need to complete before starting. I cover those below.
In a nutshell, the software update works well. I am now the owner of a Dexcom Open Choice model and I've switched to the WaveSense Keynote meter full-time. Goodnight OneTouch and the terrible cable (meant to sound like Goodnight Moon). From start to finish the whole process took about 15 minutes, including the download of about 3 weeks of reading from my receiver.
Dexcom marketing has told me that they're going to send upgrade kits to Dexcom Seven customers in order of purchase. Those of you who first bought the Seven will get these first, and folks who bought in February will get them last. They're going to send a letter out next week explaining the process.
There are a few gotchas to this update and I'll explain these as I show you some of the upgrade screens below. I'd recommend reading to the end of this post before starting.
You should:
Download all the readings from your receiver (it'll save time later).
Get the transmitter serial number from the receiver screen that's used to change it. It will be something like JTJLR, and you can see it without changing it. During the software upgrade process your receiver is completely reset. So you'll have to re-enter this number. You'll also have to restart your sensor, or change to a new one.
Make sure your receiver is fully charged. There are dire warnings about disconnecting during the upgrade and the process does drain the batteries some. If your receiver battery went dead in the middle of the update I think this would be a bad thing.
You'll have to connect to the internet to do the update. As part of the upgrade Dexcom gives you a keycode that you'll enter to get the new software. The value is similar to 2ABD-E512-3210 (this is not valid).
When you install the new version of the DM software and run it, there's now a new option under Tools menu in the upper right.
After you connect your receiver the update process starts and you'll see a screen with six steps on it, you cannot disconnect your receiver until all steps are completed.
At step 3 you're prompted to enter the code and the new receiver software is brought to your PC.
You can then download all your data readings from the receiver or just skip this step if you're downloaded beforehand
The receiver update then starts.
Several minutes later the update is done and you now have an Open Choice Dexcom model.
You'll need to re-enter the transmitter serial number and insert a new sensor (Dexcom's advice) or just restart the one you're using (my advice). After the usual 2-hour startup period you can now calibrate using whatever meter you wish. My YouTube video shows how this is done (skip forward to about 3:10).
I did this update five days ago and I've been using my restarted sensor since then. Being able to calibrate with the meter of my choice is a wonderful feature, but I've even more excited that Dexcom can now issue future software changes that we can make at home.
Note: I currently own shares in Dexcom. I try to make sure this ownership doesn't influence what I say about their products and technology.
Vista Therapeutics has licensed some Harvard University technology that uses nanowires to look for proteins in your blood. These are small wires, about 10,000 could fit inside a hollow human hair.
According to TR this is initially targeted at inpatient use and it's very early in development. Eventually they may be able to create implantable glucose sensing devices...but don't hold your breath.
I stumbled across the Pharma 2.0 blog recently after getting a Google News alert about a posting there.
Bunny's post is about the influence that certain key people (patient opinion leaders) have on others. In her post, she explains
These are individuals who are well-versed on their disease and are influencing thousands of others with their writing. I’m not saying that KOL’s (Key Opinion Leaders, usually refers to physicians) are on the wane, but industry should start paying more attention to this new generation of influencer.
She lists several well-known bloggers and me. I can't really think of myself as in the same league as the rest, so I'm grateful for the compliment.
I have to agree with her. For someone living with a chronic disease I'm much more influenced by what I learn from friends online and in real life. That's because their experiences are based on the tricks they've learned from managing this irritating condition.
Doctors and CDEs are important, however unless they also have diabetes they can only advise and guide based on the experience they've had in dealing with hundreds of patients and in their study and reading. I don't trivialize any of this, but living with the disease does give an empathy and connection that can't always be appreciated.
Medtronic clearly sees a lot of revenue potential in future devices. According to Reuters, they are planning to spend 35% more this year on their next generation of diabetes devices. According to the article they want to make these
simpler to use and more effective in managing the disease
I do hope they also consider other design aspects like the fun factor and how they look. Ease of use is definitely important, but I'd also like a device package that doesn't necessarily look like another mobile phone. I'd also like to move away from the Henry Ford-like approach to diabetes devices. "You can have that in any color as long as it's black or blue".
As a long-time Minimed pump user, I moved to a Cozmo last year because I just didn't see any innovation in what Minimed were doing. The design of the sensor for their CGMS is just plain ugly and way too large.
Do you want proof? See klil's picture from the Diabetes 365 project. How did they manage to make something this big? Have they checked out what Dexcom managed to do?
Despite my cynicism, I think this commitment from Minimed is a good thing. They're the big dog of diabetes devices and if their additional spending produces innovative designs, it's a sure thing that competitors and start-up companies will take up the challenge.
While I'm talking about device design, I hope you've had a chance to see Amy's post about the recent DiabetesMine design contest.
My latest video shows how I used the Diabetech HomeCheck A1c test kit to test my A1c at home.
This is the second time I've used this kit to check my A1c levels. Total cost for the kit is $35.34 including shipping to my home and shipping the test sample back to the Diabetech labs.
In the video I show how to use this simple kit. In the video I mention a form that needs the test date not your birth date. My mistake.
I mailed the test to Diabetech on Tuesday and last night, 3 days later, I got the results back my e-mail (I can also ask for them by postal mail) and they showed my A1c had improved from 7.6% in November to 6.8% in May.
It's a great improvement and I really like that I can do this so easily at home. Total time from ordering the kit to getting the results was 10 days. Pretty good and I really liked the results I got.
Full disclosure: Kevin McMahon, the CEO of Diabetech, is a blogging acquaintance of mine. I've paid in full for both these tests and did this review without being asked to by Kevin. I like the product and admire the work that Diabetech has done to make diabetes management easier.
He's going to post the interview once he's had a chance to transcribe it (be patient, this will take time).
Dr. Faustman did an excellent job of explaining how they arrived at the approach being trialled, to use BCG as part of a possible type 1 diabetes cure. The current trial (and remember that many trials fail) is to determine whether a low dose of BCG has any effect on the bad T-cells. The trial completion and trial results won't happen until sometime next year. Remember, these are phase 1 trials and many phase 1 trials fail.
I asked her how much it would cost to complete phase 2 trials. The price tag is $25 million. That's a lot of fund raising and asking people for support.
They can't do trials in multiple centers because the equipment they've developed for testing results is not portable. In one case they moved a piece of equipment across the lab. It took 9 MONTHS to recalibrate it and get it working again.
We saw the equipment (no photos allowed). It's complex and large. The size of a full sized fridge on its side. To take a blood sample and extract the T cells takes an entire day. This is not fast work. They're doing it in a methodical and painstaking ways. At the same time she's taken some bold steps to move forward when others might have held back.
Each time I've met Dr. Faustman I've been impressed by her ability to clearly explain complex processes and experiments in layperson terms. She clearly understands the urgency of this work, but she needs to do it 'the right way' so that the results cannot be questioned. Remember when her original work was published in 2001, 2002 a lot of scientists did not believe the approach would work. It's now been replicated in several other labs.
I know the timescales aren't fast enough for any of us. This type of scientific experimentation takes time and a lot of effort. The lab has had delays in the past because they were waiting for funding. The best way we can speed the process up is to continue to fund the work.
I'm hoping to run in a triathlon later this year and use that for fund-raising. I also use the (small) ad revenue from my diabetes search engine to support the lab. There are many other ways to sponsor the work of the lab.
Once David blogs about the interview, I'll update this post with a pointer to it.
The Diabetes Technology Blog is focused on using technology to life better with diabetes. I review: blood glucose monitors; continuous glucose monitor; blood sugar meters; diabetes software and living with diabetes.
About Me
Name: Bernard Farrell
Location: Massachusetts, United States
I was born in Ireland and now live in the US.
I have had Type 1 diabetes for over 35 years. I struggle with my blood sugar, the same as most people with diabetes.
I wear a Cozmo 1800 insulin pump and a Dexcom SEVEN CGM to track my blood glucose levels. I also take Symlin to help control my post-meal blood sugars.
I'm blessed by God, and every day brings the possibility of a cure.
I got a copy of Bob Hawkinson's excellent book The Joy of Diabetes, and I've read it twice. I plan to try and do this every other month.
I'm planning on sending her a copy of this nice 
