Blood Sugar Trampoline

Diabetes Cured- What I’d Do First

I don’t know how long it took me to realise after my diagnosis of type 1 diabetes that what people were telling me about the cure being found in five years was total tripe! But I did! Not only that but I actually gave up all hope of it. Not in a bad way, I just got on living my life with diabetes and tried new treatments and didn’t spend much time thinking about a cure.

That is until I heard Aaron Kowalski speak at the Friends for Life UK conference in 2014. This talk was the most EXCITING and positive that I attended at this conference and I came away with a solid belief that the next best thing to a cure (either the Artificial Pancreas or Beta Cell encapsulation) is probably more than 5 years away but it’s close.

By the way, there is a Friends for Life UK conference happening this October and I believe there are less than 100 tickets left which can be booked here.  Find out more from their Facebook page.

Anyway, back to a diabetes cure and what if there was, some day, a cure? What would I do first?

I’ve struggled with an answer to this because there are so many things I could do, like eat a whole chocolate cake in one day but I feel like I really wouldn’t truly feel happy after the first slice. but what would I do first and most enjoy?

Diabetes Ireland’s Research Section

Then it came to me in a dream a couple of weeks ago and I remembered to write it down. I was on a very long, leisurely and invigorating walk. It was somewhere beautiful like the Burren, the view was spectacular. I was carefree and felt weightless. I was not one bit worried about my glucose levels at all. I didn’t have my glucose meter or supply of glucose with me – my rucksack so light. It was a good dream! It was a dream that made me feel happy when I woke up.

It was a dream where I didn’t feel lost if I woke up tomorrow morning and my type 1 diabetes was gone. I’ve been doing diabetes over half of my life and a lot of what I do is habit. I do glucose checks without thinking. Not only that but my blogging, advocating, reviewing educational material for pharma companies & event organising takes up so much of my life and I love doing it. So what would do instead? I suppose the answer is anything. And whatever I wanted.

Now I was on a roll and I thought about what it would be like to eat when I was hungry I may even enjoy food again. Be enthusiastic about delicious food instead of seeing meals as math problems.

Or What would it be like to go to the beach and not worry about sand getting into my medical devices or trying to keep test strips and insulin cool? What would it be like to go through airport security like a person without diabetes-oh wait that actually happened 🙂 see here. What would it be like just do something spontaneous?

What would it be like to have all that space in my brain that’s currently occupied by diabetes related decisions?

What would it feel like to not know what my glucose so levels were every minute of the day, but still know that they were normal???

Well now I’ve opened the can of worms I can’t seem to stop.

Thrive-abetes; Thrive with Type 1 Diabetes Conference

I was lounging on my couch beside my hubby one Saturday afternoon looking at my registration for Friends for Life UK (FFL) and thinking to myself “Why do I have to go to London to avail of an inspirational and motivational conference like FFL?”

My ever-supportive and crazy-ideas husband said “Sure you could pull off something like that, NO PROBLEM!” Sometimes I wonder about him?
Well that’s where the idea for Thrive-abetes; Thrive with Type 1 Diabetes came from.
Well, what is Thrive-abetes?

Thrive-abetes is an abbreviation of “Thrive with Type 1 Diabetes”. It’s a one day conference for parents of children with diabetes and adults living with type 1 diabetes, taking place in Ireland on Saturday the 3rd October 2015. The event is supported by Diabetes Ireland, the national association for people with diabetes in Ireland (Registered Charity No. CHY 6906).

Why do I need this event to take place?
I want to meet more people with type 1 diabetes; I want to hear their stories and draw support from them. I also want to learn more about ways to cope with my type 1 diabetes every day.
I am fortunate enough to meet some people with type 1 diabetes face to face but others are not. Through the amazingness of FaceBook, I’ve learned that others want what I want. We have done the research to prove it!
This conference is needed because one of the best sources of support and information to families with Type 1 Diabetes is other people with Type 1 Diabetes. We would like a non-virtual place to meet, share and support each other.

This type of event does not exist in Ireland…..until now!

What is Thrive-betes going to offer?
Our Type 1 Diabetes conference is going to focus on the psychological impact of living with a chronic, lifelong illness. We aim to provide “Inspiration, Motivation and Information”  to people living with type 1 diabetes, both parents of children with diabetes and adults at our conference.
We have invited  speakers who are internationally renowned in the diabetes community and we are confident we can attract a minimum of 200 delegates. We are also being supported by Diabetes Ireland, the national association for people with diabetes in Ireland.
You can find out more about Thrive-abetes here.

Why do we need to raise money?

Some of the cost of this conference will be raised through delegate registration and exhibitor fees but we still need to raise €6,000 to ensure that this event takes place.

We have launched a crowdfunding campaign with an Irish company to try and secure as much of this amount as possible. All donations will be directed to Diabetes Ireland (registered charity no. CHY 6906) and would be greatly appreciated.

How can you help?

The success of a crowd-funding campaign depends HUGELY on making as many people as possible aware that the campaign is happening. 
The first thing that people can do to help this conference happen is to post this link; https://www.icrowdfund.ie/campaigns/thrive-abetes-thrive-with-type-1-diabetes-conference/ on your social media page with your reasons why you want this conference to happen.

The next thing I would ask people with type 1 diabetes in Ireland to do is to consider asking your employer to donate to the campaign.

Then, if you can think of any other businesses or employers that would give generously to this campaign, contact them or ask me to contact them on your behalf.

Maybe you don’t know of any businesses off-hand but you can also help us by posting on all social media. You can copy my post on Facebook or share it.

Please help us make this happen!!!

Diabetes and Mental strength

I was reading a blog entry on TypeOneNation.org by Kady Helme recently, about her trial of the artificial pancreas. I was actually really excited to read it because I had imagined that wearing the artificial pancreas would be like not having type 1 diabetes at all. Especially after listening to Aaron Kowalski, JDRF’s Vice President of Treatment Therapies at the Friends For Life UK conference in Windsor.



Anyway, it is a well written piece and not at all what I was expecting. I had a “stop-me-in-my-tracks” moment though as I was reading it, where Kady used a phrase that I feel encapsulates the big struggle we face every day in living with type 1 diabetes. The “struggle” that is sometimes there a lot or sometimes there only a little. She wrote; “It wasn’t until I was without the AP system that I understood what a mental burden had been lifted.  It was such a treat to have something monitoring my sugar levels every five minutes and reacting to it. I only really had to focus on T1D at mealtimes.”



We have lots of daily tasks that we need to do to live well with diabetes and that’s what most people think is the difficult part of living with Type 1. But really, the finger sticks and injections are just small things in the big picture. Its what’s going through our minds as we continue on with our day beyond the time it takes to complete those tasks. The “what if’s”, the toing and froing of the guesswork, the checklist of questions we have to go through before we make a decision on how much insulin to take. Questions like; when did I last take insulin and what did I eat at that time? Have I been active this morning? What am I going to do this afternoon, is it going to be active? When am I having my next meal? Will I have time to eat?



Any treatment for type 1 diabetes that can lift that mental burden even just a little is as good as a cure to me.

FFL/Children w/Diabetes, UK 2014 Diabetes Burnout

Avoiding and Overcoming Diabetes Burnout

Presented by Jill Weissberg-Benchell who is a licensed clinical psychologist and a certified diabetes educator for 20 years. She also co-wrote Teens with Diabetes: A Clinician’s Guide which is available on Amazon. She currently works in Chicago, Illinois.

Do you know what Diabetes Burnout is? If you don’t, you are so lucky! But I’m thinking that a lot of you know EXACTLY what it is. Or maybe you’re not lucky, that you have experienced it but didn’t know what it was called.
For me, diabetes burnout is the feeling of being done with diabetes, I feel so tired of having diabetes, tired of having to do all the things that I do to keep well. I still end up doing all of the tasks of type 1 diabetes but I don’t have any energy left to process the information to make the changes that would make life better, easier.
So, I was especially interested in this session because I’ve been finding it more and more difficult to fight burnout and wanted more knowledge and power over it.
Firstly, let me tell you about how Jill Weissberg-Benchell should be worshipped. She does not have type 1 diabetes but she understands type 1 diabetes like she has it! People like Jill are few, very few. She could describe scenes from our lives as if she had been to all of our homes and witnessed it herself. She really got everyone in the room talking. 

However, I was a bit disappointed in the session because even though we laughed, cried, shared and patted each other on the backs; it was dominated by parents of children with type 1 diabetes. Usually, this isn’t relevant but when the parents were sharing how they avoid burnout with weekends away from their children I was a “smidge” jealous. 


But my envy was short lived. Parents really do have a tough time and while I can’t get away from my diabetes, I only have to take care of myself; I know exactly how I’m feeling at all times. I don’t have to guess like a parent has to with a child.

That aside; Jill was a mine of information. She reassured us that today there is only a 3% risk that people with Type 1 will develop complications. I had suspected that this was true because of the better management tools and treatments available today. Its nice to have someone say it.
Also, when someone in the room voiced everyone’s biggest fear; “dead in bed” syndrome, she said that in most cases (not all but in most) dead in bed is caused by alcohol or drugs. And I believe her because she is a medical professional, has access to the data, and because I need to believe her. 

I did get something out of this session that I hadn’t expected. I realised that one of the ways I tackle burnout is through my diabetes support group. I always feel uplifted when I meet my other D-people. I do the opposite of what parents of children with diabetes do; I immerse myself in all things diabetes to try and avoid burnout.

Attending the Friends for Life UK conference in London was definitely exceeded all of my expectations and I met some fantastic people from the world of diabetes. People like Melissa & Lesley from InPuT Diabetes, Angela from Scotland, Joe Soloweijczyk from A Mile in My Shoes, to mention but a few. 

Friends for Life UK 2015 has been scheduled for October 30th to November 1st. More details will be announced on www.childrenwithdiabetes.com website.

FFL Children with Diabetes UK 2014 Diabetes Research; What’s coming?

This talk was presented by Aaron Kowalski, from the Juvenile Diabetes Research Foundation (JDRF). Dr. Kowalski oversees JDRF-funded research aimed at accelerating the delivery and development of artificial pancreas systems.
He is also a person with type 1 diabetes and was diagnosed at the age of 13 in 1984. Prior to that, in 1977 at the age of three, Dr. Kowalski’s brother was diagnosed with T1D.

 

This talk was the most EXCITING and positive that I attended over the 2 days because I came away from it with a solid belief that the next best thing to a cure (either the Artificial Pancreas or Beta Cell encapsulation) is only a couple of years away.

Artificial Pancreas (also known as a Bionic Pancreas or the closed loop system);

What is it?

There are two types of Artificial Pancreas, which confused me for a time. One Artificial Pancreas is a combination of an insulin pump containing rapid acting insulin, a Continuous Glucose Monitor (CGM), and a device such as a tablet or smartphone, which runs the software that communicates with both the pump and CGM.
The other type of Artificial Pancreas is two pumps, one pump contains insulin and the other contains glucagon, a different hormone that raises blood sugar when it gets too low. This system has an app that runs on an iPhone, which is connected wirelessly to CGM. This Artificial Pancreas was developed by Ed Damiano, an associate professor of biomedical engineering at Boston University.

Both Artificial Pancreases have successfully completed clinical trials and are very close to being “available”. In fact, we had a parent attending the talk who’s daughter is participating in the overnight closed loop trials. She showed us a tablet with her daughter’s overnight readings presented in a graph. It was such a straight line!

 

Why are people excited?

  • Both of these systems will take the guess work out of diabetes management.
  • There is minimum input from the user.
  • The Artificial Pancreas uses a pump that will shut off the supply on insulin if bloods glucose is trending low and will switch back on when BG’s come back into range.
  • Ed Damiano’s Artificial Pancreas releases glucagon to raise BG’s when they drop.
  • And it’s close to being widely available. Dr. Kowalski said that people would have it in two years and if you factor in the “builder’s estimate” calibration, I would estimate 4 years.
My concern, now, is how far behind in diabetes technology Ireland is in relation to providing insulin pumps for all. When the Artificial Pancreas becomes widely available and people start demanding it; there will be trouble.

Beta Cell Encapsulation;

What is it?

About a decade ago there was considerable excitement in the T1D community about islet cell transplants–the transplantation of insulin producing cells back into the body. But islet transplants have a big downside: high doses of potentially toxic immunosuppressive drugs are needed to block the same autoimmune attack that initially triggered T1D.

 

Encapsulation describes a therapy where a pouch composed of beta cells or islet cells, surrounded by a protective barrier, is implanted into the body. The barrier hides the islet cells from the immune system, providing a safe environment where they can function normally. The cells constantly assess the amount of glucose in the blood and release exactly the correct amount of insulin. And unlike islet transplants, no immunosuppressive drugs are required.

 

Why am I excited about this?

I’m excited about this because in my opinion its very close to a cure. There are no gadgets to wear. You would have to have them re-implanted every two years but that’s nothing compared to all the tasks I do daily to manage my diabetes.
Encapsulation is still a ways off but I’m really hopeful to see it in my lifetime.

Smart Insulin/Glucose Responsive Insulin;

What is it?

Smart Insulin is an insulin that would only activate when glucose if present in the blood. One of the problems in today’s diabetes management is that we can sometimes have too much insulin causing low blood sugars/hypos or too little insulin causing high blood sugars.

 

I’m sitting on the fence with this one; I don’t think I know enough about it.

Afrezza inhaled insulin;

 

What is it?

I will have to admit that when I heard the scientists were having another go at the Inhaled insulin I rolled my eyes. But having someone explain what it is and be excited about it got me interested. Not excited though;-)

 

Yes, it’s an insulin you inhale but it has a peak of 12 minutes. it works extremely fast and has been used instead of boluses, by Dr. Kowalsky himself. It works so fast that you can use it after meals and still avoid the after meal spike.

Diaport;

 

What is it?

This is not a new treatment option; it’s actually something that is available but isn’t very popular. I’m including it because I had never heard of it before.
The Diaport is a cannula that is surgically inserted into the stomach cavity, so the insulin works much faster than being infused with a pump cannula. Dr. Kowalski said that one of the problems with the current insulins is that they’re too slow and can’t deal with the post meal spikes in blood sugars. Someone in the audience then spoke about the Diaport.

 

I love learning new information but this treatment option seemed like a last resort to me.

Regeneration;

 

Did you know that people with Type 1 Diabetes still make beta cells, no matter how long they have had it, but the immune system kills them before they can get making insulin. Regeneration is trying to find a way to protect them or fix the glitch in our immune system that takes them out.

 

Another one to watch but too far away to get excited about yet.

Round up.

 

As I mentioned earlier this was the most exciting talk that I attended. It was difficult not to be infected with Dr. Kowalski’s enthusiasm and excitement. But also being in the same room as someone who was using the Artificial Pancreas was electric. I feel that being so close to the technology was a signal to me that it is close and that we are actually talking about a couple of years.

 

Ireland better get it’s skates on!

FFL/CwD, UK 2014 Part 2; Continuous Glucose Monitoring

More from the Friends for Life Conference UK 2014.



Continuous Glucose Monitoring: 
What Difference Does it Make?

presented by Lesley Jordan & Melissa Holloway from INPUT
Lesley is the Chairperson of INPUT, I would recommend Irish people who are considering the transition to an Insulin Pump or to a Continuous Glucose Monitoring Systems (CGM) to have a look at their website. They have a step-by-step guide on how to get either of these devices. Don’t be put off by the references to the NHS because in my experience of getting an insulin pump all the other steps are the same.

I went to this talk because I’m currently trying to get the CGM to add to my Animas Vibe Insulin pump. I wanted to gather information so that I could campaign to get it funded by the HSE.

In Ireland, the HSE will fund this if you have either severe hypo unawareness or nocturnal hypos. If I don’t qualify I may be to fund it myself. It costs approximately €600 (for a transmitter & 4 sensors) to start and then approximately €240 per month but I think I can make the sensors last longer than 2 weeks and therefore reduce this cost. It cost a bit more if you don’t already have the Animas Vibe because you would have to buy a receiver and also have to buy the package from a different company.

The other people attending this talk wanted to hear from others about how it have benefitted them and how they could get the NHS to fund it better.

How does a CGM benefit people with type 1 diabetes?

  • CGM’s have a “Trend” feature which not only gives you a Blood Glucose reading but arrows that indicate which direction our blood glucose is going and how quickly. This feature can help you head off hypos and hypers before they become problematic.
  • A CGM can improve your blood glucose by helping you to narrow the range of your blood glucose results. Basically, smoothing out the rollercoaster of ups & downs.
  • Since the Dexcom 4 came out they prove that the sensors are more reliable and the information is more reliable from the readings. Indeed blood glucose meters have a 20% inaccuracy rate and cgms are now better than that.
  • CGM’s are important because diabetes is not the same every day now matter what. A CGM can help you with all the factors that influence blood glucose that you cannot control.
  • Using a CGM is like having a movie versus a photo. BG is the photo, it gives you the information of that moment in time, where as a CGM/movie gives you a lot more of the story.
  • It eases the anxiety around hypos and gives you the power to head them off.
  • It gives you the ability to aim for tighter targets without increasing the risk of hypos.
What did I learn?

  • I learned about Standard Deviation (or bell curve). I’m ashamed that I’m only learning this now. Standard Deviation shows you how often your blood glucose control is not in range. HbA1c is only an average number and while my current HbA1c is 50 mmol/mol (or 6.7%) my actually readings swing very high and very low. My HbA1c number is telling my that my control is good when it is not. Here is a better explanation of standard deviation and why it’s important.
  • I learned that everybody should have access to CGM’s. Children especially, should have access!!!
  • I learned that one of the options open to me is to fund the CGM myself, gather data on how much better my control is and then use that data to strengthen my case for HSE funding.
More about the Friends for Life UK next week.

Friend for Life/Children with Diabetes, UK 2014 Part 1

School is back! So I can plough in to my summaries from the Friends for Life/Children with Diabetes Conference in Windsor, England, which took place on August 15th to the 17th.

A weekend of type 1 diabetes might not sound like the perfect mini-break to a lot of people but for me it was just what I needed. For a number of years, I’ve read all these fabulous blogs by people with diabetes and about all the events they go to where they meet so many people like themselves, like me, and where they learn so much about what’s going on in the diabetes world.

I’ve always been a smidge jealous of them. Until a couple of years ago when I discovered one of the largest Diabetes Conferences for PWD in the world also does a United Kingdom version. Finally, I got a chance to join in this last August.

It was a weekend of being surround by people & children with diabetes, whose names, I have no idea of, but I felt like they were friends. A weekend organised to make life less difficult for everybody (carb counts over all the food in the restaurant). A weekend where the medical professionals joined in the fun with us, like they were one of us (and a lot of there were). A weekend where even the talks I thought weren’t relevant to me taught me something. 

I have also never, NEVER been in a room with so many insulin pumps in my life!

I’m going to break my summary down into a number of parts, my last count was 5 but I think I can reduce that to 4; for your sake.

Summary of the Conference Part 1.

The first talk we attended, bright and early in the morning was a NHS Update. We didn’t think that this one would be relevant to us being under the HSE system and were inconsiderate & lackadaisical in attending (i.e. we were late) but I did regret missing the beginning. Serves me right.

The NHS update was presented by Dr Fiona Campbell, a consultant paediatrician and diabetologist at St James’s University Hospital, Leeds. She started the paediatric pump programme in Leeds in October 2002 and 90 children currently attending the paediatric diabetes service use a pump to control their blood glucose levels. 

I had assumed that this presentation would have a negative influence on me and be full of the woes of the NHS and how nobody can do anything about it. Dr. Campbell was quite the opposite; she talked about rocking the boat but being able to stay in it. She gave the impression that any problem that came her way always had a solution. Funding was an obstacle but always possible to get around. She was so refreshing.

Her talk was that of someone who very much wanted to improve diabetes care for young people and someone who doesn’t accept that it cannot be done.

She says that the NHS has evolved from a culture where clinicians used to ask “why are kids on pumps?” to now asking “why aren’t they on pumps?.”

What did I learn?

I learned that the countries Ireland should be looking at to do a better job of providing good diabetes care are Germany and Austria (funnily enough, Germany is the country that paved the way in terms of structured type 1 diabetes education, eg DAFNE and Berger), as they have the best outcomes for Children & young people.

I learned that in that same list of all the countries in the developed world of Diabetes Control in Young People aged under 25, the UK countries (including Northern Ireland) and Ireland rank last to 5th last. Ireland being dead last. I took a photo using my iPad of this slide to try and remember where and what this list was but unfortunately to photo was too blurry.

I learned that maybe Ireland needs to extend the national Paediatric Diabetes Under 5’s programme to the Under 12’s.

I learned that Ireland should be using more of a network approach to our diabetes care. All of our diabetes clinics should be linked together, communicate with each other, and help each other do better and not compete with each other and resent each other. Instead of every clinic provide a their own service with no standard, they should all have the same service to a high standard (paraphrasing from Dr. Campbell).

I learned that I can chose to be a trouble maker or a rebel. I chose rebel:-)

The Irony!

I attended the Children with Diabetes/Friends for Life UK conference in Windsor, England last weekend.

One whole weekend jam-packed of type 1 diabetes. A weekend of being surround by people & children with diabetes whose names I have no idea of but I felt like they are my friends. A weekend organised to make life less difficult for everybody. The organisers made sure that all the food provided to us came with carb content information.

Imagine eating at a restaurant where you didn’t need to guess so much!

However, from the time I left my house on Friday morning until the time I arrived back to my house on Sunday evening I only had one blood glucose test under 7mmols!!!! The whole weekend my readings were low teens to mid teens. How ironic!

I wasn’t too worried about it though because I knew as it was only two days, that I was doing a lot of sitting around yapping. I would try and fix them as best I could but I was far more focused on having fun and making the most of having soooo much support & education every where I looked.

I promise to post more about the conference as soon as my children go back to school because I’m bursting to talk and talk and talk about it. (anyone who knows me will obviously know that that is nothing new:-)

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