Canadian Diabetes Association #T1DExpo 2016

~ Steve Edelman ~

Those words above I think are what really made the 1st Canadian Diabetes Association (CDA) Type 1 Diabetes Expo (#T1DExpo) come to full realisation with 700 participants (and all adults - whoo! whoo!)  involved in this event that was held in Toronto.  Note:   I have since found out that similar events have been going on by The Charles H. Best Diabetes Center in Brooklin, Ontario - and their next one is taking place on May 6th in Ajax, Ontario with similar topic discussions).

I’d say about ½ the participants were all T1D’s and at least 10 of us with +50 years of diagnosis and all in good health!  I’ve never been to a Canadian event that was aimed just at T1D’s .  I didn’t have to travel by air or too long a distance to attend, and be with people who aren’t all insured American with devices that we don’t have here in our country or the ability to afford them.  Yes, we Canadians vary much from our friends south of the border who sometimes seem to boast without thinking of their  ability to have a new insulin pump (after they've decided the one they just received isn't their cup of tea after a few months) or CGM.  Here in Canada, we wonder if we can ever try these devices they post about, let alone find a private/work insurance provider and/or province that will help fund it.

Chicken !!! (I just about swerved the car off the road when my friend screamed this out when driving through Port Perry) !  Yes, a fairly almost 9 hour drive to get to Barrie from Cornwall (a few pit stops along the way).  It made for some interesting experiences along the way with a T1D  friend of mine that I picked up in Kingston.  

Now on to the serious stuff .. the #T1DExpo ...

What did I learn from this conference that I didn't already know about?   I did find out  about a study taking place  called Ease-2  for an oral medicine that will be used in combination with insulin to help regulate blood sugars better in T1D.  I may contact the two researchers, Nancy Cardinez and Bruce Perkins (if the hyperlink above does not work for you - click on the following link for more information - https://www.mountsinai.on.ca/care/lscd/research-studies)

One of the speakers was Dr. Steve Edelman, who I've heard of through the grapevine.  He's had T1D since he was 15 - and along with his fellow co-worker who is also a T1D, Dr. Jeremy Pettus ... they created some great laughs along with getting to the more serious side of diabetes management.  Both work at TCOYD based in San Diego and put out some great videos (Steve Edelman went through the "warranty program" live at this conference - but you can get a jist of it at this link ). 

What was interesting with the two speakers above?  No pushing of whether insulin pumping or injections was the way to control your diabetes, it is whatever works for you to keep you in control of your health.   American conferences I've attended in the past, seem to push pump technology, but that is probably much due again to the way American health system works hand in hand with the insurance/pharmaceutical/medical supplier companies.

The emphasis though ?  Very strong on the use of the CGM, and both Americans did state that they understood that not many Canadians have insurance coverage for these devices.  Again, that south / north border thing with our two countries - we can only dream of using a CGM at times, unless you've lucked in on "donations".  Like myself, they stated that if they had a choice of either a pump or a CGM .... the CGM would win hands down.  I found that pretty amazing coming from them, and glad to see others thinking the same way (my next blog post will expand abit more on this MDI vs pump after a recent endo visit).

The one interesting thing, I spoke to a few diabetics who had been diagnosed 40+ years ago, much like myself, and when asking them about insulin pumping, I found it abit odd to hear that they were not interested at least in giving it a try.  To live in a province that funds pumping defies my sponge brain as to why not give it a go and the reason I moved here to Ontario!

Overall though for a first time attempt at encompassing a group of T1D's compared to the usual T2D crowd that many of us find CDA cater to ... it was a pretty amazing.  The only thing that many of us as T1D's found difficult though was the lack of carb counts on the foods we were eating, along with lack of low carb foods (which hopefully for future expos they're holding this year will be better organised).  Many of us were disappointed in that small aspect of the whole day, and paid dearly for it with blood sugars going abit whacky.  

Also, I've heard through the grapevine, that CDA will hold it in a bigger venue for next year, due to the size of the crowd (the cut off was originally 500), which made it difficult to get into the exhibition area if you weren't into being squishy and friendly with everyone as you tried to get information.

Thank you CDA and their volunteers who without them events like this wouldn't go as smoothly.  For  those of you wondering if a #T1Dexpo will be coming to a town near you ... check out this link - it could be closer then you think !!!  

My Reflections of the International Diabetes Federation Conference in Vancouver

Sock Monkey preparing to give a speech!

We made it to Vancouver!!!

I’ve been back for a week now since doing my volunteer stint at #wdc2015 in Vancouver where  I lucked in on being one of the 100 volunteers that help IDF run smoothly.  Now, when I  say “lucked in”, being a volunteer is an expensive endeavour for those of us who don’t live close by.  For myself, it was a 12 hour journey to get to Vancouver on a milk run (if you saw my posts in Instagram with my 4 hour layover in Edmonton and “date” with one of the Westjet employees … you will see I made the most of this long trip out west).  I lucked in for this trip of having a nephew who is a Captain at Westjet giving up one of his standby passes to allow a less expensive option of flying the friendly skies of Canada along with shacking up with two other T1D mates in a time share that one of them has that was under a 2 km walk each day to the conference centre in Vancouver. 

Hamming it up within the #bluecircle

Despite this time of the year, which is rain, rain, and more rain … I loved my time in Vancouver both during the conference and afterwards (will blog about that experience later … let’s just say … I’m no longer a virgin when it comes to staying in a youth hostel).  The temperatures weren’t cold though many of the non Canadian visitors to the conference thought otherwise (e.g. “Dubai is 30C today … this 11C is cold”).  Ha! Ha! Come to other parts of Canada my friend and you will not be complaining.  All I can say, if I had a well paying job (rents are not cheap in the city which is where I’d love to live), I’d move out there in a flash!  Fresh seafood, laid back people, 2^nd hand shops galore, funkiness, ability to walk in comfort, good public transport … need I say more?

This was my 2^nd time volunteering with CDA (Canadian Diabetes Association) for the IDF convention, the last time was in 2009 in Montreal where I lived at the time (you can read about it @Diabetes1.org where I also did a stint wearing a media badge for them … this time I didn’t).   I loved my experience last time, talking to doctors, researchers, companies involved in helping diabetics live life to the fullest.   This time though, IDF due to legalities of products either not being available in Canada, as well as my not being in the medical profession limited the company representatives the ability to converse with me, and some could not even giving me a brochure to help me pass on the info to others (e.g. my CDE's at Cornwall Community Hospital - sorry).  This was my main goal with attending the IDF conference!  So sadly this maybe my last time going (next one is in Abu Dhabi) – as I found it highly frustrating not to have open and honest conversations with people.

Henna Tattoo (I got two) - and insulin pens that have been blinged out in "jewels"!!!

The one good thing though despite not being able to obtain info on new insulins, etc. was the amount of people I met who had either never seen a T1D of my longevity, without complications or the devices I wore.  I educated a few of them on the Dexcom G4 CGMS, insulin pump (e.g. a few nurses were interested in watching me do an infusion change in the washroom one day when Ziggy, my insulin pump, ran out of his juice of life aka insulin).  I was invited to a few countries to give talks (me … on a stage … never … leave that to the ones that enjoy being in the lime light … I’m just happy doing what I do here from my laptop and meeting folks in small groups).  So that made up for not being able to collect more information that I did last time I attended and I'm hoping to play catch up with some of the information sessions that I couldn't attend due to schedule with volunteer duties that are available to attendees to view online.

What did sadden me the most, and what I was being asked to help out with if I came to their country to educate/speak …. EDUCATION (please note … as I told them … I am not a medical professional … just someone living with diabetes most of their life).  It is greatly lacking, along with resources, and costs for drugs, etc. that we all take for granted here in Canada / USA (50 test strips a year are covered in some countries for a T1D!!!).    One surgeon I spoke to from Bangladesh, who performs amputations told me of the amount of amputations he does, not just of toes, but of legs due to people not either knowing they are diabetic, or footwear (many go barefoot or wear shoes that allow objects to become embedded into their feet).  He wished they had better education in their hospitals or community centre that taught people about foot care and diabetes.  I heard similar stories from people I met both during and after the conference, e.g. I met a woman from Saudi Arabia on the day of Santa Claus’s parade in Vancouver (piss pouring rain) and she asked me for directions to it.  It turned out as we walked that she had attended the conference, we discussed diabetes and how I handled it, exchanged calling cards, and viola, another person dealing with the epidemic of Type 2 diabetes in their part of our big blue marble.

The best part though?  Meeting up with new people and some I only know online and never met IRL since joining the #DOC (diabetic online community) in order to learn how to use my pump back in 2008! That in turn lead to a job at Diabetes1.org along with getting more involved in advocacy (I didn’t really talk much about diabetes for my first 41 years with it … shame on me).    Cherise Shockley gives a really good hug and speaks from the heart.  Manny Hernandez … well my “wet pussy” statements floored both him and Tom Karlya aka Diabetic Dad (sorry – I told them I didn’t wear my ears walking to the conference centre due to getting … rain soaked!!).   Sadly, I think Kerri Sparling was worried another photo bomb would be taken of us … so she avoided any "ear contact" with me ;)   The main thing though, meeting up with other folks (some you see scattered in pictures here) who are advocating / educating about diabetes is the most important thing!!!

Here’s to finding a CURE!!!

National Diabetes Awareness Month (NDAM)

Hmmm, I've been seeing various places within the DOC (diabetes online community) going on about this being some celebration of diabetes month (NDAM). Yuppers, glancing at my calendar on my wall - THIRTY days of advocating in many different forms about my disease I've had for almost 1/2 a century.  Boy oh boy - do WE feel special or what? On further research (gotta love search engines) - I discovered that in the United States - Mr. Obama has declared that it indeed is true. JDRF Canada has as well -along with ADA (American Diabetic Association).  I was even surprised after abit of sleuthing that the CDA (Canadian Diabetes Association) website that they have as well!   I could probably post more - perhaps from other parts of the world - but I'll leave that up to you to let your fingers do the walking across your keyboard (and if you find any good ones - post them here). Everyone has their different approach to how to celebrate.  I have to admit one of my favs has always been the Lee Anne Thill's World Diabetes Day Post Card Exchange (details can be found at the bottom of this blog for 2013). A new one I've come across this year is well known American advocate/blogger Kerri Sparling's of Six Until Me - Diabetes Month Photo-A-Day project.  I always like to take pictures (have mobile - will click) - so you'll either see those pics posted here at The Roller Coaster Ride Diabetes or at Diabetes1.org website.  All depends on how many projects I get involved in (I mean - there is a life outside of diabetes - right?) So - what will you be doing this month to tell the world about diabetes?  I can't wait to see - but remember - awareness and advocacy isn't just a once a year thing.  It's all the time for many of us that advocate / educate. Remember though - if a person's eyes start to glaze over as you yammer on - retreat - some of what you'll have said will enter into their already over-logged brains - and hopefully they'll walk away with abit better understanding of what diabetes is all about!