Supporting PWD’s in India through Penpals United

Penpals United header image

Jack Terschluse

Jack took me on an amazing field trip. In the space of about 90-minutes we visited four different clinics in India spread over 3,000 miles and reaching hundreds of people living with diabetes.

Jack Terschluse is the founder and President of Penpals United, an inspiring community of people with type one diabetes worldwide offering support and inspiration to children and teens using online support groups and traditional pen pal opportunities.

Dr. Santosh GuptaHe got the idea when his former endocrinologist, Dr. Santosh Gupta, retired to start her own foundation to support children with type one diabetes in northern India (the Manav Seva Foundation).

“She told me about the lack of support networks for children in the developing world and connected me to a teenage girl named Surbhi who I started exchanging letters with. An idea popped into my head: what if an online support group existed for children with type one diabetes around the globe?” — Jack Terschluse, Penpals United

Thus, Penpals United was born. Thier vision is to build an inspiring community of people with type one diabetes worldwide by offering online support groups and pen pal opportunities for children and teens with T1d.

Penpals United Support GroupWith mentors from the US, Canada, England, and Mexico now serving over 250 children monthly in India, Mexico, Rwanda, and Uganda, they are making a difference and continue to grow.

Jack says, “Our motto, Many miles, Many people with T1 diabetes, One connection, reflects the power we’ve discovered in sharing stories about living with T1d, ultimately empowering kids to be diabetes leaders in their villages who then can lift other kids up as well.”

My Experience

A map of India with pins showing the clinic locations we visitedMy time with their online support groups was nothing short of incredible. After connecting with Jack and his team, we spent the evening virtually zooming around India visiting with four different diabetes groups at local hospitals and clinics.

At each group I spent a few minutes sharing my story and talking about living with diabetes, then I took questions from the attendees. I was impressed by similarities we all face and their drive to grow their ability to support their peers, not only in terms of diabetes education, but also in the psychosocial space that we all know is so important.

Image of the video conference screen showing Scott, Jack, Hannah, Alex, Dr. Santosh Gupta, and one of the groups in India

I was also very impressed with the rhythm and system that Jack has put together. As we wrapped up at each site, one of Jack’s team (in this case, Hannah in the upper right, or Alex in the lower left) would stay behind with the local group to answer any additional questions, spend a few minutes following up, then transition it to the local group facilitator.

Penpals United Group Shot 2In the meantime, Jack, Dr. Gupta, and I would zoom off to another site and start the discussion with a new group. About halfway through, one of either Hannah or Alex would rejoin the call, ready to handle the transition again. It was all very smooth and gave me the impression that each local group was very well taken care of.

We only see part of the team here, but Jack has an awesome group helping, including Jay Haapala, who you may have seen on Scott’s Diabetes before.

One of the most powerful memories I have from my time with Penpals United is something Dr. Gupta said to me after we finished.

“Most people there, even the doctors sometimes, don’t expect people with diabetes to live more than 20 years. So simply seeing me, and others like me, who are living well after so many years of diabetes sends an incredible message of hope and inspiration.” — Dr. Santosh Gupta

She continues, “Having a Penpals United online mentor who lives successfully with type one diabetes shows these children that they too can live long, happy lives.”

How Can You Help?

I asked Jack if he had to pick one call to action, what would it be?

Write a letter to a child with T1d and then tweet to @PenpalsUnited that you wrote a letter! Building the international T1d community through the internet and Twitter is vital. — Jack Terschluse, Penpals United

View the United Penpals photo gallery for more

Asante Snap – Strong & Simple Challenge

asante-snap-insulin-pump-brand

I am a fan of the Asante Snap insulin pump. I like it so much that it is official replacing my beloved Cozmo and I’m going to be doing some work with Asante Solutions through 2015.

share-your-story-imageIf you are an existing Snap pump user, why not take a moment to take part in the Asante Snap Strong & Simple Challenge? For each video submitted, Asante will proudly make a donation to one of two great non-profit groups (Diabetes Hands Foundation or Diabetes Youth Families).

If you’re not a Snap user, why not send in a quick video talking about what you interests you or what looks exciting about the Snap pump?

Maybe you’d even like to try the Snap pump? You can get a free 4-week trial that includes support from a diabetes educator!


Disclosure: I have a business relationship with Asante Solutions and am a member of their patient advocate advisory board.

Prep Pad from The Orange Chef

Image of the Prep Pad with Oranges on it and an iPad & iPhone behind it

I recently had a chance to play around with a Prep Pad from The Orange Chef.

To call the Prep Pad a food scale seems wrong. I mean, it is a food scale, but there is something beautiful and elegant about it. It feels different than anything I’ve used before.

The Prep Pad connects to an iPad or iPhone via Bluetooth with the touch of a single button (visible in the image above – little black dot on the right side). The app, called “Countertop,” is required to use the scale.

Much like the Prep Pad itself, I found the Countertop App elegant and beautiful. You can watch a quick promo video on the homepage of theorangechef.com, or check out a slightly longer and more detailed video here.

Prep Pad retails for $99.95 (regularly $149.95), and the folks at The Orange Chef have generously included a coupon code just for readers of Scott’s Diabetes, valid until January 15th, 2015, that will drop the price another 10%, which brings your total down to $89.95 with free standard shipping included.

10% Coupon Code

I’d love to hear about your experiences with the Prep Pad if you decide this is something for you (or a loved one). While I still have many emotional triggers around measuring my food, using beautifully designed tools and applications help a lot.

I’d also like to send a big thanks to The Orange Chef for supporting their local ADA Tour de Cure (Silicon Valley).

Don’t forget, the coupon code is only valid through January 15, 2015! Be sure to place your order before then to take advantage of the discount.


Disclosures: I received a Prep Pad to review at no charge. The coupon code and links above are not affiliate links and I do not receive any monetary compensation if you choose to buy a Prep Pad. By clicking through for the coupon code you agree to receive periodic email updates (newsletters) from me, however your information is never sold or given away and you are welcome to unsubscribe at any time.

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. :-)