DIABETES - keeping you humble

My wife has an expression she uses when our Daughters glucose numbers (blood sugar levels) go "out of whack".

"Just when you think you know everything, you still know nothing."

Immediately after you or some one you care for is diagnoses with type 1 diabetes you go thought the training with the diabetic team (in our case at the children's hospital), they give you lots of guild lines and scenarios to help you deal with activity level, illness and just everyday issues that can affect blood glucose levels. These helpful tidbits are relevant, but the most important lessons we have learned are that no one diabetic is the same.

Some diabetics manage their glucose levels during activity by taking extra carbohydrates based on how long and how vigorous their activity is going to be. We have learned that for our daughter that her levels raise during activity, and then fall for up to 24 hours after, so we are constantly monitoring her all that night, and the next day - reducing insulin level or increasing food intake.

When our daughter developed a flu shortly after being diagnosed, my wife was ready with her instruction on how much extra insulin to give to help keep her glucose numbers down - as typically illness like the flu cause extremely high blood sugars. Not for us! After the initial high sugars the day before she showed any symptoms, her blood sugar level began dropping dangerously low, we we could not deep her blood levels in a safe range. We had to take her to Emergency twice, and the second time they kept her overnight, in order to give her IV in order to raise her blood sugars to a safe number.

Over time you learn to deal with some of the quirks that her diabetes presents. Now throw in all the challenges that come with a thirteen year old, whether she is stressed at school, anxious about an upcoming track meet etc....the game starts all over again. Talking with other parents, it has always struck us how different each family seems to be in their approach and methods of dealing with diabetes, but other than personal parenting choices, diabetes demands an individual plan of attack.

As comfortable as we sometimes get with our Daughters regiment, there will always be something that puts the brakes on. Maybe it is her body's way of preventing us form getting to complacent. It seems that we will always be learning, adjusting and evaluating when it comes to diabetes, which I guess is a good thing. Knowledge in the case is power and research is the key.

We believe that the only long term solution is a cure, that is why we are focusing our efforts on funding a research project we believe very strongly in, to learn more about this project, what we are doing to help fund it and more about Type 1 Juvenile diabetes please visit our website at:

www.cycle4jdrf.com

Volunteers What would we do without them?

Thankfully there are people who choose to make their profession in the field of helping others, like those that work for charitable foundations like the team at the Atlantic JDRF. It is by times a hard and thankless job, but obviously rewarding as well. They are the backbone of any foundation, most specifically the JDRF in its dedication to being very fiscally responsible with the money raised though it's various events. We cannot thank you enough.

Then there are those who volunteer their time and energy, to help others - invaluable.

On June 12th, 2011 was the annual Telus Walk to Cure Diabetes. Held in a number of cities across Canada. The Halifax walk had a great turn out, and as of the end of day on Sunday, the event had exceeded its goals and raised in excess of $144,000.00 with some donations still to come.

The Walk event is a major fundraising vehicle for JDRF, and the fundraising coordinators are the foundation for organizing the sponsorship, logistics and million other large and small tasks required to pull off an event of this size, and they did a fantastic job! As well like most events, it takes a small army to stage a fundraiser, and yesterday the volunteers were there in a big way.

I understand the call to volunteer for a cause that directly affects you and those you love. That is evident in my family's efforts to support diabetes research and programs. What never fails to impress me and touch me deeply are the number of volunteers who were at the Telus Walk yesterday, giving up their Sunday, (not to mention time spend before the walk), because they wanted to help.

The organizing committee lead by some of the most dedicated and passionate folks I know, Keith, Tabatha, Ron and Ben you did a phenomenal amount of effort and should be very proud of your success.

A big thank you has to go out to the owner of Sunnyside Too in Bedford who provided a pancake breakfast for all the participants at no charge, and cooked up a wonderful meal with his own staff and equipment that he supplied, ensuring that everyone had lots to eat and even had a card breakdown for the food.

There was everyone from teenagers to seniors who were there to "help" with anything that needed doing, from setup, to registrations, as well as keeping kids entertained with games, face painting etc. Their efforts were nothing short of outstanding.

The fact isthat any number of events could not take place without the selfless volunteer, and I would like, on behalf of my family, to extend our most sincere appreciation and gratitude to all the volunteers out there who give of their time so generously.

The next time you are at a fundraiser or community event, take a look around and notice hoe many "volunteer" badges or shirts you see. Then make a point of thanking them for their dedication, I will.

What do you think about "While spending hours cycling?"

This is a question I have been asked often over the last year or so since I started spending upwards of two to three hours a day, a few times a week, riding my bicycle either on the road or around one of the trails which I recently discovered in the Halifax area.

It can be a hard question, there being so many possible answers. Some days it would be easy, sorting through work issues, planning what needs to be done at home etc, any number of everyday thoughts that being out on the road, for an extended period of time (alone) gives you the chance to ponder and assimilate. The sound of the wind in your ears, the various sounds that your bike makes as you roll across different surfaces, seems to allow me to focus on only those things that matter while clearing out those thoughts that just get in the way.

Some days just seem to click and you feel like you fly and some days are a constant struggle, to get comfortable on the bike, constantly worrying about the traffic, breathing hard, legs feel like lead, not feeling up to another ride or, worse than anything, getting some goofy song or ad jingle stuck in my head, having to listen to it play over and over for a couple of hour - the whole time watching the clock on my bike computer mover by so slow that I am sure I am riding through some time warp that will never end, just wanting to quite and walk it home.

It was on one of these days when every turn of the pedals seemed to be an effort and I was sure that one of the kids had changed my seat position on the bike it was that uncomfortable - one complaint in my head after another - that it came to me. This must be a little bit like what my daughter (and other diabetics) go through every day; an ongoing cycle of blood testing, counting every carbohydrate in everything she eats, administering insulin, changing insulin infusion sites, having to eat or drink even when you may not want to (3:00am low) having blood glucose highs and lows...but unlike me on the bike, she can't just jump off and walk it home. Diabetes does not take a break.

My incentive - that goes without saying - Megan! The proverbial "carrot" - that a cure is attainable through research! Research is expensive and can I really raise enough funds to make a difference? The answer is YES, baby steps.

$1,000.00 = analysis of 50 diabetic blood samples,

$3,000.00 = thorough molecular characterization of the cells,

$5,000.00 = optimization of the protocol for the expansion of human cells in culture,

$10,000.00 = allows a preclinical study in mice, the necessary step prior to establishing a

phase 1 study,

$15,000.00 = testing safety of the protocol in mice before attempting it in humans.

So, I will keep pedaling, one hill at a time, if you can help please use the following link to make a donation that will allow this type of research to continue. http://bit.ly/gjpaDQ

The Day I found out I had Type I Diabetes - Megan age 12

Diagnosed

The Doctor asked, "What do yo think it is?"

I was October 16th, 2008. My Mom had taken me to our family doctor's office to see what could be causing my extreme, never ending thirst. At first, mom thought it was because the weather was so warm. As the days cooled down, and days got shorter, she noticed that I had been drinking even more than usual.

My mom sighed, and her answer to the question was that she was afraid it was diabetes. Then came the hard part. Dr. Connel, the doctor who has been taking care of my family for years, and who in fact delivered me, had to tell us that my mom was right. I did have diabetes. She called the IWK (children's hospital in Halifax) and told us they would be waiting for us in Emergency.

We went outside and caught the next bus going to the IWK. It was cold outside, and my hands were like ice. When we walked into the emergency room, a nurse told us to take a number and to wait. The ER was warm, and smelled like hand sanitizer and that weird hospital cleanser they clean the floor with. Looking around, I noticed people in worse situations than me. Some people had a broken leg or arm. Others had serious cases of the flu, coughing so hard they couldn't breathe. The difference between those people and me was that, they seemed in a lot of pain, so I stopped pitying myself so much.

Our number was called, and a nurse in yellow scrubs took my blood pressure, heart rate, and pricked my finder with a painful needle. It hurt a little when she massaged my finger until enough blood came out to fill 3 small vials, and then put a bandage on it. Soon an emergency room doctor came in, and told me that having diabetes wan not the end of the world. He told me about some of the famous people and live saving surgeons that have diabetes. He said that diabetes won't get in the way of anything if I don't let it.

I wasn't just diagnosed with diabetes that day. I was also diagnosed with hypothyroid disease that is common with diabetes. It is when your thyroid (an organ in your throat that helps metabolize your food) is under active. It can lead to being overweight, and pills are used to treat it.

The day I was diagnosed with type 1 juvenile diabetes was the day I decided to find a cure.

I needed to start with taking control of my diagnoses. There was a lot to learn, and managing a strict mealtime schedule, along with reading every nutrition label, testing and recording my blood glucose levels and making adjustments to my insulin does was very time consuming. This was my mom's job. There were lots of nights when my parents did not get a lot of sleep - there still are. The thing about diabetes is that it does not shut off when I go to bed. My mom and dad make sure that I am "safe" while I sleep at night, and I will not usually know when my blood is being tested, unless they wake me for what my dad likes to call my "midnight feast" (juice and granola bar) if my sugar levels are low.

Eight months after being diagnosed "Megan's Team" participated in the JDRF Telus walk. Nine months after I was diagnosed I went to Camp Lion Maxwell with 70 other diabetic kids, it was there that I started doing my own insulin injections (4 or more a day). I have gotten a group of kids from my school to do a car wash, and have bake sales to help raise money for research. I have been a youth ambassador for the Telus walk and for JDRF's "Ride to cure Diabetes". This year I am on the Maritime Team with my dad for Cyclebetes - which is a national bike relay from Vancouver to Nova Scotia. My team will be cycling from Quebec City to Nova Scotia.

I am achieving my goals. We manage very good controls on my blood glucose and I am now on an insulin pump. I am doing everything I can to spread the word about diabetes, and to ask for help in funding research that will one day mean I will no longer be Megan Beamish - who has Type 1 diabetes, but instead will be Megan Beamish - who has a miraculous story to tell.

If you can please donate to my fundraising efforts at: http://bit.ly/mPYwXD

If you would like to learn more about the specific research project that all my donations will be directed to please go to: http://bit.ly/fXwijt

Profile of the Research Project we are Supporting

The main area of research for Dr. Sylvie Lesage's team is to inhibit the specific immune response that is responsible for the destruction of the insulin-producing cells within the pancreas, which leads to type 1 diabetes. Being able to block this specific immune response will provide a major step towards the achievement of a cure for this disease. Currently, the only type of therapy used to block immune response actually blocks the immune system over a broad spectrum, which can lead to a number of issues, including making you susceptible to even a low-grade infection.

Dr. Sylvie Lesage's team believes that they have discovered a way to specifically block the immune attach on the pancreas, thus eliminating the secondary effects caused by a broad spectrum therapy. Using this form of therapy, they strongly believe they will be able to:

1) Prevent the development of the immune attack that leads to diabetes in those individuals that would be most at risk of developing the disease.

2) Halt the progression of the attack in recently diagnosed patients. Since new-onset diabetic patients usually still exhibit some level of insulin production, blocking the attack may allow for the reversal of the damage already done.

3) Finally, for diabetic patients that have lost all insulin production, the hope is that by combining cell replacement therapy with this treatment that blocks the autoimmune response against the insulin-producing cells, they can re-create the insulin-producing ability of the human body, thus curing diabetes altogether.

If you would like to help support this very important Canadian based research team please use the secure donation page located on my profile at http://bit.ly/gjpaDQ

To learn more about the team conducting this research please go to http://bit.ly/fX041U

Prince Edward Island Tip to Tip for JDRF

Well its official on June 25th, 2011 I will be attempting to cycle from the western tip of Prince Edward Island to the eastern tip in one day. The goal of this trip will be to raise both awareness and funds for Juvenile Diabetes research.

We have chosen to support a specific research project based here in Canada. This project was selected based on having had the opportunity to meet with Dr. Sylvie Lesage the project leader and have her blow us away with the advancements that she and her team have made in achieving the "gold medal" in diabetes research, prevention, care and eventual cure. I would strongly encourage anyone interested to review some of the research she has been doing. http://bit.ly/fX041U

Over the next few days we will be launching a website at: http://www.cycle4jdrf.com/ which will have more detailed information about the PEI ride as well as sponsor pages, and information on how you can track the ongoing progress of the ride as well and importantly a secure donation link. Check back often as there will be lots of detail published to this blog and website.

Thanks everyone.

A Beginning and an End

One more day till we kick off the National Relay out of Halifax. Seems hard to believe six months has gone by this quickly.

We started today off with a great ride along the south shore with some of the crew and other riders from the relay team. Then everyone was off to get ready, for me back to work to finnish off a few things, while the rest of the team was off to finnish getting the RVs ready and food bought etc.