PERL Study – Early Treatment for Diabetic Kidney Disease

I am a believer in participating in clinical research.

It is an important part of medical progress, and if it weren’t for clinical research, we would be in pretty poor company when it comes to choices and options for the products and medicines we use to manage our diabetes.

I have received some of the best medical care of my life through clinical studies

For example, some years ago I had an opportunity to participate in a study at the University of Minnesota called the RASS Study. The study included two actual kidney biopsies, one at the start, and one at completion, five years later.

Can you imagine the peace of mind when Dr. Mauer told me my kidneys look great even after so many years with diabetes? Sign me up, all day, every day.

Participation is Key

I believe there is a misconception about clinical research. I think that people hear those words and get a little scared. They think that there is a lot of risk involved, and that they will be putting themselves in harm by participating.

Yes. There is some risk involved. There is always risk involved. But studies done at reputable institutions, like what you’ll find through clinicaltrials.gov, are designed with safety first on the list. Nobody wins if a volunteer is harmed during a trial.

And there are many benefits to participation.

  • Feeling of contributing to advancement of medicine and medical science.
  • Advanced and intensive medical care and screening, unlike anything you’d typically get through your normal doctor.
  • Early access to medications that may be beneficial (you have to weigh the risks here, as they may be unknown).
  • Free medication during the course of the study.
  • Sometimes even payment for participation.

PERL Study

Dr. Michael Mauer

Dr. Michael Mauer

Dr. Michael Mauer (University of Minnesota Medical School), and Dr. Alessandro Doria (Harvard Medical School & Joslin Diabetes Center) and their teams have asked for help in spreading the word about the PERL Study (Preventing Early Renal Loss in Diabetes). It’s a 3 year study and they are looking for about 480 people with type 1 diabetes to enroll. Candidates should be showing early signs of decreased kidney function on either blood or urine tests.

This is the only trial that is looking at early treatment options for diabetic kidney disease, which is very exciting.

Diabetic kidney disease continues to be, by far, the most significant cause of kidney failure in the USA. Slowing early progression could provide many years of additional good health. — Dr. Michael Mauer, University of MN

There are study centers in most areas of the Unites States and Canada, and travel costs will be paid for eligible participants. Please see the PERL Study website to learn more and find out if you might qualify.

PERL Study

Please spread the word if you might know someone who may be interested.

Guest Post: Rick Phillips – Diagnosis & Disney

Image of Rick Phillips

Rick Phillips

First, let me extend a thank you to Scott for allowing me to borrow this space. It is a privilege to be asked to fill in with a blog post while he is busy working. I normally blog at TuDiabetes.org and lately I have opened a blogging effort at CreakyJoints.org focusing on issues that are intertwined between Rheumatoid Arthritis and Type 1 Diabetes. As a person who is ‘blessed’ (I use that term loosely) with both conditions, I am looking forward to exploring  the intersection of the diseases.  Since I am hopeful that Scott will allow me to blog in the future (editors note: of course!), I thought I would tell you my diabetes diagnosis story. I hope you find my story meaningful (I know it is meaningful to me and perhaps you will get a chuckle)


Traveling South

A young Rick Phillips (not really...) :-)

A young Rick Phillips (not really…) :-)

To set the stages please understand these events all occurred in June of 1974. I was 16 years old and thinking a lot about what young men think of at the age of 16. I mean studying of course (I am sure that is what you were thinking about when you were 16 correct?).

In addition I was also thinking of going to Disney World for the first time. In 1974 that was a pretty big deal. Unlike today when families go as a matter of course; in 1974 it was a special trip.

So we piled in the car (all 3 of us I was an only child) and started the drive from Indiana to Orlando. Saying piled means I stretched out in the back seat of an Oldsmobile Delta 88 the size of a battleship and treated it like my living room.

Image of an Oldsmobile Delta '88

The Green Delta ’88

On the drive south my Dad was very interested in me driving. I had recently obtained an Indiana Beginners Permit and my Dad decided I needed to practice driving at high speed on the Interstate.

Given that I had never driven on an Interstate, it seemed like a really good idea to my Dad so he insisted I keep up with traffic (meaning going 95 MPH). I was a kid steering a green Delta ’88 rocket with the three of us and all our meaningful possessions (minus my 200 record albums) down the road to Florida.

Suggesting that perhaps rush hour through Louisville was not a good place for an inexperienced driver only made my Father more resolved to make me do it.  By the time I got through Louisville I was absolutely terrified, I had been lost 4 times and my Dad was yelling at my incompetence.

Mom could not see so well so she sat in the back reassuring my Dad I knew how to drive. Saying I could drive was a point I disagreed with her about. What I knew was that going 95 MPH with only a Beginner Permit through Tennessee was a really bad idea. The drive took 2 days and my Dad claimed he was exhausted and he wanted to leave immediately to beat traffic on the way home.

For as long I as I could remember, my Dad had been trying to beat traffic. He refused to go places because of traffic. We left places early to beat traffic. We even got into traffic to beat traffic.  Once in Detroit he went to Sarnia ON to Windsor ON to beat traffic at the Detroit Border crossing (a detour of 226 miles one way).

Disney World

Walt Disney World Resort

Paradise, right?

Then the big day arrived and we finally got to Walt Disney World. I was cautioned before going in the park entrance not to ask for anything because our money was tight (it wasn’t but that was the customary caution from my Dad upon entering most anywhere).

Once inside the park and about midday on the first of 3 planned days, I started drinking. Well to put it more accurately I started my new project which was the only travel blog devoted to the drink stands and men’s rooms in the Magic Kingdom.

I know you may think it an exaggeration but I was spending so much time at the men’s room that I was actually thinking of how to organize lines. That was even odder because there were no lines. As far as the drink stand, the guys in the Tomorrow Land concessions offered me free refills.

As such, I gave them 4 stars in the planned visitors guide to Disney World.

After the first day my parents knew there was something wrong and with my mother being a type 1 Diabetic she suspected I was developing Diabetes. Mid-day of day two I took my first urine test.

By the end of the day my parents decided it was time to break off the vacation and get home as soon as possible. On day 3 we went to the Gulf Coast to visit a restaurant my mom wanted to try (I still find  it difficult to believe that with a sick kid you would take a day to go to a restaurant).

On day 4 in Florida the car was turned north and we were retracing our path toward home. Then two days later we arrived home and the next day I found myself in the hospital receiving insulin.

Hospital

On my first day in the hospital the hospital staff brought me the infamous orange, I ate it. I was really hungry and that orange looked so good. The same thing occurred on day 2 and day 3.

Each day the ward nurse would come to my room with my insulin and ask if I had practiced injections. I would truthfully answer no and she would go get me an orange and a new syringe with saline I would wait until she left, peel it, eat it and dispose of the evidence and the syringe elsewhere on the floor.

On day 4 of my hospital stay she no longer asked if I had practiced. She brought the needle and said the day had arrived to demonstrate what I had learned. I gave my first injection and of course now (for the past 12 years) I wear a pump so I no longer give injections. But almost every day since that morning in the hospital I have thought of that nurse and the frown on her face.

Knowing I had not practiced and waiting for me to cry she gave me the needle; so I set my jaw and stuck it in. She looked disappointed that I did it. I think in her world making non-compliant teenagers suffer was fun.

Moral of the story

Of course my story has numerous themes. First, when you are really hungry those hospital oranges taste pretty good. I was really hungry. The angry nurse be damned, never leave a hungry diabetic in the room with an orange by his self.

In total, I have visited Disney World 4 times. The second time I lost the car and searched for 2 hours in the Epcot Center Parking lot, finding it at 2 AM. My children, wife and Disney World employees were not amused.

The second time the Hotel had a fire alarm and everyone had to leave their rooms at about 1 AM. Apparently the power had gone out when the alarm went off and I was left searching in the darkness for my insulin, low coverage items and Glucometer.

The third time I stayed at the Contemporary Hotel but never visited the park.

On the fourth visit, things went just fine but of course I was always on my guard for a pending disaster.

The overarching theme of my story is that Disney World is not always the happiest place on earth. Further proof is that I have met three people who all became ill at Disney Parks and that illness turned into diabetes (one in California, One in Disneyland France and of course myself).

Together we have decided that Disney Parks may not be our best place for our vacation.

Next time I am going to Universal Studios.

Disneyland Sign


Thank you, Rick! That was a fun story! I had a big grin on my face many times as I read your tale!

It’s an honor to share your diagnosis story here, and I’m happy to have you back anytime you’d like. 

Scott’s Sweepstakes – Great Low Carb Bread Company

Do you enjoy a low carb lifestyle? If so, you might like the Great Low Carb Bread Company. I’m not familiar with many of the low carb products on the market, so I can’t offer much useful information about how these products compare to others. But the samples I received were tasty, even for me (someone who usually eats regular carb products).

Of the products I tried, the everything bagels were my favorite, the lemon cake square were my least favorite, and the breads were somewhere in-between.

I didn’t do any rigid scientific experiments, but from casual observation my blood sugars seemed to agree with the labeled carb content (I bolused for the carb count and didn’t experience any surprise lows or highs).

I don’t normally buy these types of products, so I can’t tell you where they fall on the affordability scale or if they are a good value. I’d love to hear your thoughts if you have experience here.

[contesthopper contest=”5982″]
In the meantime, how about some free stuff? :-)

The folks at the Great Low Carb Bread Company have offered a nice package of goodies for one winner (one loaf of bread, one package of bagels, and 2 brownies, muffins, or squares)!

Spread the word for more chances to win! And please let us know if you’ve tried any of these before!

Good luck!

Riding on Insulin – You Betcha!

Winter Sports Camps for Kids & Teens Living with Type 1 Diabetes

It’s a midwest mashup of Riding on Insulin events over the next couple of months, including a Family Day right here in Minnesota! There is a Family Day here at Afton Alps on March 7th, 2015.

Riding on Insulin Midwest Camps

There are fundraising and full scholarship opportunities to help with registration costs, if necessary.

The DSMA Team spoke to Sean & Mollie back in May of 2013.

P.S. – Sean and Mollie Busby live in the same small city in Montana (population ~ 6,600) that my aunt and uncle do! What are the chances? I love how small the world is sometimes. :-)

Revolutionizing Diabetes Education with mySugr Academy

Education is a huge part of living with diabetes. Unfortunately, many people with type 2 diabetes are diagnosed then leave the office with little or no education.

If they are lucky, they’ll get back to their doctor’s office for a session with an educator a couple of weeks or a month later.

But what happens in-between? Imagine the questions!

What can I eat? How do I use this blood sugar meter? What do these numbers even mean? It’s paralyzing.

So my clever friends at mySugr have come up with a solution.

Introducing mySugr Academy.

The first course (10 levels with animated videos, articles, tips, challenges, and more) is geared towards type 2 diabetes. We have type 1 stuff on the roadmap, too.

We hope this online diabetes education tool helps fill the gap between diagnosis and initial education, and maybe even proves to be a powerful supplement to traditional diabetes education.

I’d love to know what you think! I’d also love to know more about your diagnosis/education experience. Please leave a comment, or send me a private message if you prefer.

Thank you!

Happy World Diabetes Day!

mySugr World Diabetes Day image

Scott’s Sweepstakes! Marked Measuring Glass!

A Cup or a Glass?

I don’t drink many carb filled liquids (unless I’m low), but sometimes a tall glass of milk really hits the spot.

Marked Measuring GlassBut I often don’t give much thought to whether I’m drinking a cup of milk, or a glass of milk.

There’s an almost automatic association of 12g cho when I drink milk… maybe it’s a holdover from the old days of exchanges.

If I only poured 8 ounces of milk into my glass that would be just fine. 8 ounces is 12 grams of carbs. But I can see from this picture that I’m often pouring at least 12 ounces, maybe more!

Do I need to do the math on what an extra 4 ounces of milk does to my carb count (it’s an extra 6 grams)? And that’s if I stop pouring at that 12 ounce mark, which I don’t think I normally do.

Looking at this etched glass and thinking about my milk drinking, it gives me one of those “wait…what?!” mind-blowing moments where I realize I’m consuming way more carbs than I thought (see also: Measuring Handfuls).

Calibrating eyeballs

Measuring my food has always made me a bit angry. There is something unnatural about it and it gets under my skin at a very deep emotional level. Unresolved issues? Yeah, you bet. I have diabetes…

One strategy that makes sense to me is using measuring tools periodically to help remember what a serving size looks like.

So it’s not using measuring tools all the time (and triggering my unresolved emotional issues every time I eat), but rather using measuring tools a few days each month to make sure my “serving size creep,” or the tendency to inflate how much I’m dishing up and eating, isn’t getting out of control.

For example, every time I pour a glass of anything, I’ll be thinking about this marked measuring glass.

Give a Like

A big thanks to National Etching for allowing me to run this sweepstakes and share this marked measuring glass with you. Please take a look at their Facebook page and consider giving them a Like.

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Do You Know DiabeticDanica?

I spent a day at Asante HQ* last week with a group of amazing diabetes brains, and among them was one I hadn’t met yet.

Danica has rocked diabetes on YouTube for a long time, so I was really excited to see that she would be there, too. But the poor thing was feeling under the weather most of the time we were in town. She was still able to take part in the meetings and offer really great advice. I was totally impressed.

She seems to have a good head on her shoulders and works hard to share her story. She’s also in nursing school, which I think is great.

Danica has a LOT of great videos on her YouTube channel, and I just want to help make you aware of another great resource for people living with diabetes.

*Disclosure: I am going to work with Asante on a regular basis above and beyond the purpose of this specific meeting. Asante Solutions paid for my travel expenses and lodging for this visit to their headquarters.

Scott’s Sweepstakes! Diabetes Carb Control Cookbook!

3 Winners! Diabetes Carb Control Cookbook!

diabetes carb control cookbook

Bestselling author, Nancy S. Hughes, shares her latest book with you!

Diabetes Carb Control Cookbook features over 150 recipes with exactly 15 grams of carbs per serving.

Featured on the American Diabetes Association’s online bookstore – ShopDiabetes.org, this book sounds like a must have if you love cooking and keeping an eye on your carbs.

The sweepstakes runs until 11:59 pm central on Tuesday, October 28th, 2014.

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