Diabetes social networks

1

Hi, I’m a graduate student at MIT/Harvard medical and I would like to ask a few questions for a class that I’m taking:

  1. What tools do you usually use to monitor your diabetes (glucose, weight, etc)?
  2. Do you keep a daily record of your levels? Why or why not?
  3. How do you share this information with your doctor?
  4. Do you use any diabetes resources online?
  5. Are you a part of any online communities – which ones, how involved are you, what do you think of them?
  6. What would you like to have in a diabetes web site?
  7. How much time do you usually spend managing diabetes (monitoring, exercising, online community, etc)?
  8. How do you remember to take your medicine?
  9. What motivates you to take care of yourself?

Thanks! This will help us create a better way to help you manage diabetes.

Daniel

2

Hey Daniel,

Wow, sounds like a cool project. I’ll throw in my info:

1.) OneTouch Ultra Meter, NovoNordisk Insulin Pens, http://www.SugarStats.com
2.) Most definitely. Because inputting my daily statistics and then having the ability to see my aggregated trends over time gives me very valuable info to make decisions day to day.
3.) Via SugarStats.com
4.) TuDiabetes.com, SugarStats.com, DiabetesChatFest, various blogs etc
5.) Pretty much all of them and I think they’re all great. Brings more awareness to diabetes in general IMHO
6.) Depends on what I’m looking for. Definitely not a “Everything to everyone All-in-one” solution as they end up being nothing much to anyone. I want to have sites that take a few choice things and execute them well.
7.) 30min-1hr a day? But it is constantly on my mind and reflected in every choice I make.
8.) I remember before I eat and before I go to bed. Also via SugarStats, SMS/Email for restocking meds, doctor appointments and exams etc
9.) Basically I feel better. I notice the differences in my daily life and in general I strive for optimal health and a good quality of life. Cause and effect really.

Hope this helps, shoot me an email if you have more in-depth questions. Good luck!

3
  1. Precision xtra, symlin insulin pen, lantus solostar, humapen memoir, program called glucose one for my palm pilot
    2.Yes makes it easier to spot trends
    3.Print out a log book
  2. I do a lot of research about new treatments so search engines
    5.TUDiabetes
  3. Resources and a lot of them
  4. Probably around an hour a day
    8.Alarms set up on palm pilot, watch, etc
    9.Not getting complications and wanting to feel my best
4
  1. Heart-smart diet, daily exercise, insulin pump & insulin, glucometer
  2. Yes - it is automatically recorded in my insulin pump and can be downloaded onto my computer. Seeing the data makes adjusting my therapy more precise and effective.
  3. Yes
  4. Yes
  5. Tudiabetes. I post on my blog from time to time, read and respond to other people’s blogs and participate in various online discussions of interest. I do read a variety of other diabetes sites, however Tudiabetes is the only “online community” site that I visit on a regular basis.
  6. Like this site, I appreciate a blogging feature, and the ability to interact with other members. I also appreciate news feeds about diabetes, and sound information about diabetes treatment.
  7. It is ongoing throughout the day. Everything I do is measured in relationship to my diabetes, so it’s hard to quantify it into a specific number of minutes or hours.
  8. I leave my thyroid meds on my bathroom counter so that I remember to take them first thing in the morning. I’m attached to my insulin pump 24/7, and it has a nagging habit of beeping throughout the day to remind me to test, or change the battery, or reload the insulin cartridge.
  9. Maintaining good health motivates me. I want to do all the things I like doing when I get to ‘the golden years’. My dad had poorly controled diabetes. I saw first hand what that does to a person - not pretty.
5

Dear Members,
We reopened this conversation, as Daniel has presented information that substantiates his class at MIT/Harvard Medical School. We think that we can be a valuable resource to helping Daniel and others like him. Daniel has the full cooperation of TuDiabetes.com

6
  1. One Touch Ultra 2 Meter, carb counting, insulin pens.
  2. Yes-so my doctor can see how I’m doing
  3. Make him a copy of my bg chart
  4. Just TuDiabetes
  5. Again Just TuDiabetes–I don’t participate much, but I like to read what other people have experienced, cuz I am newly diagnosed so I’m still learning.
  6. More resources for public awareness
  7. It is a way of life now so I’d have to say it’s 24/7
  8. Well I have to take a shot with each meal so my insulin pen is with my meter and bg chart, so none of it is forgotten.
  9. I have been a single Mom for 20 years–so I am very close with my children–they motivate me all the time. I had quit smoking 2 months before I was diagnosed, and I told my children “I didn’t quit smoking to die from diabetes”–I also have a graddaughter that I want to see get married in oh about 20 years.
7
  1. Scale, meter, SugarStats.com.
  2. Yes, using the web site mentioned above. It helps me to visualize trends.
  3. I bring printouts of my numbers with me to my appointments.
  4. Yep! :slight_smile: (TuDiabetes, SugarStats, numerous blogs -the majority of the ones listed on the main page, starting with SixUntilMe and DiabetesMine).
  5. I am a little biased with this one! :smiley: (I am the Founder of TuDiabetes) -I also think DiabetesDaily.com, ChildrenWithDiabetes.com and DiabetesFriends.net are phenomenal.
  6. Mechanisms for people to connect and interact with each other.
  7. 2-3 hours per day, approx?
  8. I have a pill-case with compartments for morning/evening for every day of the week.
  9. I want to live a long and healthy life for me and my loved ones: I have a 4-year old and a wife that love me and they inspire me to keep going!

Would you mind sharing with the community the results of your findings and also share with your class about TuDiabetes.com?

8

Thanks everyone for their contributions! This will be very helpful for my class project: http://scripts.mit.edu/~hst.921/home/

I will share the results with the community and of course my classmates and professors will know about TuDiabetes.com.

Daniel

9

  1. What tools do you usually use to monitor your diabetes (glucose, weight, etc)?
    blood glucose meter (Freestyle Flash, softclix lancet), Deltec Cozmo insulin pump

  2. Do you keep a daily record of your levels? Why or why not?
    My pump remembers them and I download them to my computer using infrared. I need them to re-program my pump and show them to my endocrinologist at our appointments.

  3. How do you share this information with your doctor?
    Via email (in a pdf file) before our appointment or by printing it (depending on the doctor)

  4. Do you use any diabetes resources online?
    This website:
    www.tudiabetes.com
    and other blogs, in particular: www.diabetesmine.com

  5. Are you a part of any online communities – which ones, how involved are you, what do you think of them?
    I am part of www.tudiabetes.com and www.diabetesfriends.net
    TuDiabetes is the most helpful because it is more than a social network, rather a community of support and a great place for advice about diabetes management!

  6. What would you like to have in a diabetes web site?
    A forum for free discussion among people who live with diabetes!

  7. How much time do you usually spend managing diabetes (monitoring, exercising, online community, etc)?
    Hard to count. In some ways 24 hours a day. In terms of exclusive time at least 2-3 hours a day (including exercising, preparing healthy food, and time on www.tudiabetes.com).

  8. How do you remember to take your medicine?
    It’s like asking how you remember to brush your teeth-- that’s what I do! Also it helps that it’s attached to me via an insulin pump.

  9. What motivates you to take care of yourself?
    Desire for a long healthy life, a family,…

10
  1. Body weight scale, food scale, blood pressure monitor, pedometer, glucose meter.
  2. Absolutely. I need to know where I am before I take an insulin dose, and where I’m at after I eat to determine how effective that dose was.
  3. I write it down on a big index card in a specific format that I know he likes and can zero in on importent info without taking too much time.
  1. Sugarstats,
  2. I do my blogposting on the Diabetes OC, via blogspot.com. I don’t post very often but I read other blogs daily and try to comment as much as I can. I am also a member of Tu Diabetes - great for just a quick stop and leaving a comment on a forum, etc.
  3. News on current developments in scientific/medical arena.
  4. Oh gosh - diabetes infiltrates every aspect of my daily life. Can’t distill it down to a specific number of minutes.
  5. I take my insulin before each meal and before bedtime - pretty set patterns after 30+ years. I also take several oral meds and keep them in a M-S pillbox and take them as soon as I get up, along with a blood pressure and blood sugar reading.
  6. My biggest motivation is that a few years ago, I had signs of early kidney damage (protein in urine). After improving my control, it went away. I feel that it’s never too late for improved control.
11

Hi Daniel,

Here are my two pennies for ya!

  1. Blood Glocose Monitor, Dr.'s Lab results (A1C, Cholesterol, Protein, etc.), internal feelings (i.e. sweating, fatigue and for wahtever reason my tongue goes numb when I’m low, weird, I know)
  2. I didn’t but purchased the One Touch Smart meter that keeps averages up to 120 days and can graph results.
  3. She is able to tap into the meter and print out my results and averages so we can review.
  4. tudiabetes.com, webmd
  5. yes, here and I blog and follow some diebetes blogs
  6. Well, it’s tough. I’m not sure what would be more effective to use. At the end of the day it requires you to enter all of your information. Maybe if my Blackberry could check my BS and store it some where online.
  7. On average, probably about 1.5-2 hours a day
  8. How do I forget sometimes!
  9. The thought that one day we will have a cure and if I don’t keep myself healthy it will be too late. I want to see my kids grow up someday.

Thanks!