Thursday, February 25, 2010

Diabetes Vocabulary

I met Randy, a dad whose 8-year old daughter was recently diagnosed with Type 1 diabetes for coffee last week. He asked me what a CGM was, what APP stood for and if c-peptide was a drug. Diabetes jargon can be really confusing.

Aside from having to learn about the disease and daily care, parents of a diabetic child have to learn a new language. There are medical terms that doctors and the diabetes community throw about that make it incomprehensible for non-scientific geeks like me. In fact they seem to keep coming up with new words and acronyms that can make you feel dumb.

There have been many times that a doctor or researcher has mentioned a new term or therapy to me, and they have been met with my blank look (someone once described it as looking like "a pig staring at a wristwatch"). My advice to you is to not gloss over the gap in knowledge. Ask questions and get them to explain it to you. I find that it's well worth it, and the person telling you about it feels smart for explaining something that you don't know.

As I read diabetes research papers, I find myself using great tools like Google and Wikipedia all the time. The reading may go slower, but I get a big comprehension pay-off. It really is like learning a new language; I picture myself in the role of a student of the disease. I end up being more patient with my initial lack of understanding, and strive to learn as much about it as I can.

Here's some homework for you: For anyone who is newly diagnosed, I found that the best introductory glossary of diabetes terms is on the Joslin website. You can get a good vocabulary lesson there. Study hard!

Sunday, February 14, 2010

Chocolate is not the enemy

I love Valentine's Day. Being the only male in the house, I get more hugs and kisses on this day from my girls than any other time of the year. We exchange cards and gifts and chocolates. Yep- everything from Hershey kisses to Vosges haut-chocolat.

In a household with diabetes a bon bon windfall may seem weird, but it shouldn't be. The general misunderstanding between type 1 and type 2 results in a judgmental "evil eye" from some non-diabetics when we give out the occasional treat to our diabetic daughter. We take it as an opportunity to teach others that candy does not cause type 1 diabetes. I figure if we do it enough, someday everyone will understand what type 1 is all about it.

That would be really sweet.

Diabetes with "No Limits"

I blogged earlier this month about the inspirational story behind Olympic hopeful Kris Freeman, and in an interview with Matt Lauer and Meredith Vieira of NBC's TODAY show, he shares the story of how so many told him about all the things he COULDN'T do once he was diagnosed with type-1 diabetes. Perhaps Olympic courage is best exhibited when athletes like Kris refuse to let a setback like diabetes hold him back from his dreams; then teaches kids at diabetes camp to live their lives without limits.

Be sure to tune in tomorrow (Feb. 15th) to cheer on Kris Freeman in the men's 15K cross country skiing event.

Sunday, February 07, 2010

Losing One of Our Own

Marinda and I were so sad to hear about Jesse this week. Jesse and his mom Michelle have been huge advocates of diabetes research and awareness. They both worked tirelessly for the cause. Jesse, who was only 13 years old, died last week due to diabetic complications.

As parents of a diabetic child, this is the culmination of all our fears. Hope is one of the drivers that motivate us to find a cure, and the fear of complications and death is the other, more sinister motivating driver. Jesse's untimely passing reminds us all just how serious our daily fight is. The stakes are so very high. The pressure on us becomes even more heavy.

Jesse and his mom never gave up. Even with his death they continue valiantly raise diabetes awareness, by setting up a memorial fund for him. In life Jesse was a hero. In death he and his family continue to be a beacon for us all.

There are a number of ways you can help the family with donations or words of support:

Jesse Alswager Memorial Fund
c/o UW Credit Union
PO Box 44963
Madison, WI 53744-4963

Cards can be mailed to:
Michelle Alswager
3 Leland Circle
Madison, WI 53711

For more information:
http://www.caringbridge.org/visit/jessealswager/

Monday, February 01, 2010

Go Jets Go!

New York Jets quarterback, Mark Sanchez, is hoping to win $100,000 in grants for the Juvenile Diabetes Research Foundation as part of the Pepsi Refresh Project. “I want to help establish a much needed, nationwide educational program with JDRF to ensure that the warning signs of type 1 diabetes will become household knowledge for medical personnel, parents, teachers, and friends,” said Sanchez. “Then, a quick and accurate diagnosis can be made and proper treatment given before it results in a life threatening situation."

There are other NFL players petitioning for their causes. Please help us help Mark Sanchez win it for JDRF. Go to www.nfl.com/pepsirefresh and vote for him. We have until February 5th to vote- hurry!