My Aunt Mary Jane: After 70 years of struggle, she’s still “kicking” back at Type 1 diabetes & cheating destiny

Every picture tells a story.  Yet it doesn’t tell the full story — especially when a chronic disease like Type 1 diabetes is lurking below the scene.  Over the next few months, I’d like to tell some summer mini-stories dedicated to my Aunt Mary Jane, who recently celebrated her 80th birthday with a party in Nellysford, VA.

If anyone lives to the age of 80, they’ve overcome a lot of odds. If you add a Type 1 diabetes diagnosis at age 7,  a complete lack of any blood glucose testing systems, and throw in four children to raise,  and you’ve got a lifetime challenge. Mary Jane tells me diabetes took over her life one day when her sister, my mother – Cecilia, and her younger brother– John, came home from preschool with the mumps.

My Aunt Mary Jane Dull Hoffman, center, is celebrating her 80th Birthday in April at her homeplace in Nellysford, VA with two of her “favorite” nephews, Phil and me ( Front Right). We are joined by my wife, Lisa, my children Cecilia and Nathaniel, and Phil’s daughter Sammie.

“I’d rather they brought me the mumps, instead,”  said Mary Jane. “They got over the mumps in a few weeks. That virus is what cause me to have diabetes for a lifetime. That’s my biggest gripe with diabetes:  it’s too much to do. Do this, do that…Every day it’s something else to do. I’ve done a lot of it by the seat of my pants.”

And then Mary Jane smiles:  “Since I don’t have my feet anymore, it’s a good thing I’m flying by the seat of my pants most of the time.” After you stop laughing at the irony of a T1D who is a Joslin Medalist honored for “surviving ” diabetes, you see clearly what diabetic complications really mean. Feet are gone. And she’s the lucky one.  And then you realize: Diabetes continues to suck and if I don’t manage my Type 1 like a mad man — I could lose my feet and a lot more.

Here’s my goal in highlighting Mary Jane’s story:  To show that surviving Type 1 diabetes requires effort, luck and stubborn commitment to each day being better than the day before. In order to beat diabetes — which we have not done yet — a person also needs a healthy dose of  kiss-my-butt craziness.  When you’re sick on the inside but you look perfectly “healthy” on the outside, it’s not easy to generate a sense of urgency for more research, more awareness, and more money.

My other goal here:  To announce that I’m riding again in the JDRF RIDE FOR A CURE at Amelia Island, FLA on Oct. 30, 2016 and that all the money I raise — thanks to all my compassionate supporters — will go to JDRF and its support of Dr. Boris Kovatchev and the researchers at the Center for Diabetes Technology at the University of Virginia. The CDT team in Charlottesville is part of a five member university consortium still trying to bring an Artificial Pancreas System to reality. Funds raised support worldwide human clinical trials required to convince the FDA that it’s time to approve an AP or a bionic pancreas which will deliver better glucose control and fewer serious medical complications to persons living with T1D.

(I will add a blog update on my current participation in the ” Project Nightlight” Home AP trial — 3 weeks are done and the closed loop is working exactly as advertised — nighttime under control.)

I’m not a young man any more — so it comes down to this:  My marathon journey for a cure has become a sprint to the finish line. It’s like the riding the final stage.  Aunt Mary Jane was promised a cure when she was first diagnosed in the 1940s.  Seventy years later, the promises are still being made and we’re still pedaling up hill with our real and artificial feet!

Aunt Mary Jane and I may not cross the ultimate finish line — A cure to Type 1 diabetes without tech solutions, but we want to be counted as two people who tried to make it happen. Together, We R the Cure.

Project Nightlight: Taking another trip to Sugarland, trying to make dreams come true for T1Ds

Starting last week, I enrolled in a new clinical trial at the Center for Diabetes Technology at UVA. It has a cool code name: Project Nightlight.

The study purpose: to see if an investigational type of technology ( an integrated Artificial Pancreas system using the newest InControl diabetes management platform from TypeZero Technologies) can help control blood glucose levels and can be successfully used and supervised remotely in a non-hospital setting like — My HOME!!!

Studies like this one at UVA are happening in 2016 and 2017 — to demonstrate to the FDA that an AP with a smart brain in a smartphone can go “home” with your average T1D ( who is already smart, cool and well-managed) and deliver a safe and revolutionary tech solution for BG control. Thereby, removing some of the 24 hours, 7 days, 365 days per year attention that is normally required to keep a “normal BG range.”

Week 1: Study participants traveled to Charlottesville to change out their own insulin pump for the study insulin pump system — Accu Check Spirit Combo. Getting used to a new pump, learning how-to-change and prime your pump, searching for little tiny insulin bubbles in a long, long inset tube — is not a thrill. The 4 of us did it together with a certified diabetes educator and only used our “first names” and our study ID number to maintain our anonymity. Oops, until I just posted this?

Week 2: I had to do homework. Homework? Yes. Really. Participants were asked to answer 7 survey questionnaires about life with T1D. I took my position on the couch and answered all those detailed questions around — “how BIG of a pain in the butt” is Type 1 diabetes. I used the same answer — T1D is a chronic disease that is sometimes invisible to others — to all of the survey questions. It stinks. But you learn to manage and keep trying for a better A1c and less deviation between your Highs and your Lows.

This week, we reconvene at UVA to learn “what” is “InControl platform” and how we’ll use it to run “open loop” control in the daytime and ” closed loop” — while I sleep. We’ll go home at COB with the trial system ON and try to pretend it’s just another day in Sugarland! Stay tuned for more updates here  www.werthecure.com  or follow me on Facebook and Twitter.  Together, we are the cure.  — Mike

Seeking Cures, Cheating Destiny: “It’s Time to Wake Up and Smell the Cure — We R the Cure”

“We are the world, we are the children, We are the ones who make a brighter day, So let’s start giving. There’s a choice we’re making, We’re saving our own lives. It’s true we’ll make a better day, Just you and me … We R the Cure!”  

Yes, I’m riding again to cure diabetes with JDRF. Training has started. Our Central Virginia Chapter Team is riding Oct. 31, 2015  — Halloween Saturday — in Nashville, TN.

The signs are obvious: It’s time for a blog Comeback. Easy to say, hard to do. However, blogging is more about therapy and communication than about setting social media records. I am a proud member of the #DOC — Diabetes Online Community, and I am an advocate for better health care through research and technology. I am sorry I’ve been a dark page recently, but the good news is I am not a diabetes statistic today. I am one in 3 million Americans — an achiever battling against the odds and celebrating each day without complications.

Last week, I had the privilege of meeting Sebastien Sasseville for dinner in Richmond. I will post by recap of that chance encounter. In a nutshell, Sebastien is amazing and inspiring. Covering nearly 7500 km from coast to coast and completing the equivalent of 180 back-to-back marathons, Team Novo Nordisk triathlete Sebastien Sasseville ended his epic run across Canada in Vancouver, British Columbia on World Diabetes Day in November 2014. Sebastien ran his final kilometers into historic Stanley Park, reaching the shores of the Pacific Ocean after nine months on the road battling rain, sleet, ice and snow, and more than 30,000 feet of climbing through the Canadian Rockies. Stay tuned for my story on Sebastien.

In the past few months, I’ve also done a limited outpatient clinical trial with my friends at the University of Virginia’s Center for Diabetes Technology (CDT).  I see more trials coming on the near horizon and I’m hoping to participate  with Dr. Boris Kovatchev and his awesome team at UVA. Stay tuned for more updates on UVA CDT trials and news from across the globe.

In closing,  I’d like to reprint an excellent excerpt from Kerri Sparling’s book — “Balancing Diabetes.” It summarizes the paradox of living with #T1D — healthy looking on the outside, dying on the inside. If you don’t know Kerri Sparling — you gotta check her out online. She’s amazing.

Finding Balance and Moving Forward

“It’s a delicate balance, this one between “I’m sick” and “I’m fine.” … On an average day, diabetes falls in the “annoying but tolerable” category. … But on some days, diabetes falls into the “eff you and the effing islet you refused to ride in on” category.

“You seem fine.”  I am fine. I think? I have a chronic illness — a disease — that compromises the function of my pancreas to the point where I need synthetic insulin daily, and even with dedicated management, I may see serious and debilitating complications in my lifetime. That’s part of the dance — feeling and seeming fine and actually being fine, even though my body is dealing with something serious every moment of EVERY DAY.”

“Diabetes means living life on that seesaw. Some days you are way up high and other days have you almost in the dirt, both literally and figuratively. .. I can’t let myself hate it because it is a part of me.  A part that I work so hard to maintain.” Thanks Kerri. Your book is an inspiration.

2013 Blogging Year In Review: Thanks For Visiting We R The Cure

The WordPress.com stats helper monkeys prepared a 2013 annual report for this blog.

Here’s an excerpt:

A San Francisco cable car holds 60 people. This blog was viewed about 2,200 times in 2013. If it were a cable car, it would take about 37 trips to carry that many people.

Click here to see the complete report.

Researchers Agree: The Status Quo Is Not Acceptable; We Need More Clinical Trial Participants To Drive Progress

Imagine my surprise and excitement when a leading Type 1 diabetes researcher, Dr. Desmond Schatz of the University of Florida, unofficially promoted our “We R The Cure” blog site during the JDRF Type 1 Diabetes Research Summit on Feb. 18, 2012. Let’s roll the audio tape:

We R the Cure — and so are you. Sign up for a clinical trial today.

“We do not have enough people participating in research studies,” Dr. Schatz told several hundred Type 1D enthusiasts in his opening statements. “My goal is to give you hope, to inspire hope, and to push you to get involved. Without U, there can be no cure.” Almost on cue, an outburst of applause came from the adjacent ballroom where young children with Type 1 diabetes were playing and having fun while their parents attended the JDRF Summit. Dr. Schatz heard the applause and laughed. “I am here to make it clear, that the status quo (in Type 1 research) is unacceptable!” And again, the children cheered right on cue.

This blog is dedicated to the patients, doctors, nurses, researchers and big thinkers who are actively pushing research forward – in our search for solutions & cures for persons living with auto immune disorders such as type 1 diabetes and certain forms of cancer that are tied indirectly to weakened immune systems or a virus attack. If you’re ready to learn more or join a clinical trial, check back here often for news and information. Or simply click on Clinical Trials to get started.

My name is Mike Anderson, and I am the creator and editor of We R The Cure. I received my Type 1D diagnosis — from out of nowhere — in May 1998. Together with my friends and family, I am a passionate advocate for raising awareness and raising dollars for research and real solutions that will improve the quality of life for children, teens and adults living with this chronic disease. And one day — A cure or many cures.

A clinical study involves research using human volunteers (also called participants) that is intended to add to medical knowledge.  There are two main types of clinical studies: clinical trials and observational studies.    ClinicalTrials.gov includes both interventional and observational studies. So, what R U waiting for … Think about joining a clinical trial in 2014. It’s a new year’s resolution that is worth keeping. Thanks for your participation. werthecure.com

Resolutions To Keep In 2014: One Small Step For Man, One Giant Leap … For Diabetes Awareness

Welcome back to We R The Cure, 2014 Edition. I am happy to be back among the Diabetes Online Community.

Artificial Pancreas Closed Loop System

Yes, I’ve been away enjoying Christmas, New Year’s, working, searching for new work and — most importantly, focusing on what matters the most to me: Family, Friends and Faith. If you guessed that what matters most is my Type 1 D, well — you were close but wrong. Of course, it should have been a multiple choice answer.

If you are a person living with Type 1 diabetes, managing your sugar highs and lows is  ALWAYS on the list of what matters most. Healthy and active on the outside; dealing with a chronic, life-threatening disease on the inside. It is a frustrating condition for the 3 million Americans — toddlers, children, teens and young adults — living with it.

A new year is here, and it’s time for me to join the “New Year Resolutions” chorus and to get my editorial content calendar back ON THE GRID. So here goes my Top 5 list of what We R The Cure will focus on in 2014. Of course, the numerical ranking may switch or slide during the year. What is number 1 today, may be number 2 by year’s end. But you get the idea.

1. Tell the story of my Aunt Mary Jane.  A Joslin Center Medalist who’s been living with Type 1 diabetes for 7 decades and is still waiting for the cure they promised her back in the 1940s. She’s a survivor who has lived the ups and downs of diabetes since the age of 7. She’s got a story to tell.
2. The focus of ” We ” R The Cure is the amazing Type 1s, the researchers, the doctors, and the clinical teams pushing hard to bring tech solutions like the Artificial Pancreas to market. The focus is on all clinical trial participants. If you are participating in a clinical trial and want to tell your story — please contact me. Your story needs to be told. And we need to encourage more Type 1Ds to seek and participate in clinical trials. We need more guinea pigs.
3. Research and technology “News that we can use.” As a former reporter, my job is to highlight and interpret the daily digest of exciting and confusing news surrounding Type 1 and Type 2 diabetes.
4. Wearing My new DexCom 4 and, hopefully, the DexCom 5 in Clinical Trials at the Center for Diabetes Technology at UVA. The DexCom 5 will send its results directly to the Artificial Pancreas smartphone and not to the transmitter. This must be tested and proven successful before “Home” AP trials can begin in 2014.
5. Biking for the Cure in 2014. Finally putting this on my ” bucket list” and doing it. The target goal: Riding 60 or 100 miles, raising money for diabetes research, and keeping a journal about my training and crossing the finish line.

 

OK, there it is. I’ve placed my resolutions and goals online. WeRThe Cure is ready for another year — year 16 — of balancing life and diabetes. With the love and support of my spouse, family and friends — 2014 will be another great year.

Thanks for reading. Please comment or share ideas or stories.

Mike Anderson

Diabetes Technology: What Patients Really Want — The Video

UVA Artificial Pancreas Team Receives $3.4 Million Grant; Technology Aims To Transform The Lives Of Type 1 Diabetics

A high-tech project at the Center for Diabetes Technology at UVa to turn an ordinary smart phone into an artificial pancreas that could transform the lives of people with type 1 diabetes has received a $3.4 million grant from the National Institutes of Health.

The Center for Diabetes Technology Team at UVA is part of a worldwide Artificial Pancreas Consortium working to bring a safe and high-tech Closed Loop System to Americans with Type 1 diabetes in the next few years!

The money will fund a new network approach to artificial pancreas design using distributed computing between local and Cloud systems that will allow real-time adjustment of insulin delivery based on the individual’s needs. The grant will also fund three clinical trials at the University of Virginia and at Stanford University that will advance the project toward its final goal of offering people with type 1 diabetes – in which the body does not produce enough insulin – an automated way to monitor and regulate their blood sugar.

“This project approaches the artificial pancreas not as a single device but as a network of local and global services working seamlessly together towards the optimal control of diabetes,” said Boris Kovatchev, PhD, of the University of Virginia School of Medicine and the Center for Diabetes Technology.

The artificial pancreas was developed at the School of Medicine by a team of researchers led by Kovatchev, the director of the UVA Center for Diabetes Technology, and Patrick Keith-Hynes, PhD. The device consists of a reconfigured smart phone running advanced algorithms, linked wirelessly with a blood glucose monitor and an insulin pump, and communicating with Internet services in real time.

The system’s developers intend for it to monitor and regulate blood-sugar levels automatically, report to a remote-monitoring site and link the user with assistance via telemedicine as needed. This would save users from having to stick their fingers to check their glucose levels multiple times a day and eliminate the need for countless syringes to inject insulin manually. The physicians on the team – Bruce Buckingham, MD, of Stanford, and UVA’s Stacey Anderson, MD, and Sue Brown, MD – have tested the artificial pancreas system in successful outpatient trials in Virginia, California and in Europe.

University of Virginia Press Release

Clinical Trial At UVA Marches On: Giving My Blood, Time And Type 1 Diabetes For Artificial Pancreas Research

Writing a blog about living with Type 1 diabetes and promoting the need for clinical trials — is not exactly front-page cybernews. It’s OK to admit that I’m blogging for a very limited audience: Me, myself and I. We R the Cure is dedicated to finding solutions, sharing current research news, and spotlighting the need for more persons with Type 1 diabetes to participate in clinical trials.

I’m not seeking publicity or the spotlight. Participating in these studies does, however, sometimes make me feel like Steve Martin’s character in the 1984 movie, ” The Lonely Guy.” Am I the only guy doing this?

Last Thursday at dawn, I traveled to Charlottesville for my in-patient “Metabolic Challenge” hospital admission on Day 17 of the ” Behavioral Mechanisms of Glucose Variability” clinical trial at the Center for Diabetes Technology at UVA. The good news: I completed the study parameters by providing my blood to the researchers as they raised my glucose level above 250 mg/dl and then lowered it below 60 mg/dl to see how the human body responds to glucose swings. “Greater understanding of insulin sensitivity, particularly how the body counters a low blood sugar,” will help researchers and technology experts determine how to refine the math calculations or ” brain power ” needed for the Artificial Pancreas system, according to the UVa team.

So, let me give you the Top 5 newsworthy or ” BIG PICTURE” results from my in-patient day.

Number 5: I did not wear the new DexCom 5 CGM prototype for the admission as originally planned. The manufacturer was not ready to release it for human trial just yet. The next generation DexCom 5 sensor will transmit its glucose readings directly to the AP’s SmartPhone and not to CGM transmitter. This is a key step in closing the loop on the closed-loop AP.

Number 4: The DexCom 5 should be available for testing in upcoming AP clinical trials, hopefully as soon as Feb. 2014. If the DexCom 5 is tested in trials then it sets up the important next step: Setting up “AP home trials” for out patient clinical trials in 2014-2015. A final step on the pathway to FDA approval.

Number 3: To be a clinical trial participant, it helps if you don’t mind having up to 2 IV catheters plugged into your arms. And, you need to ” enjoy ” having blood drawn every 5 minutes during the critical ” high” and ” low ” period of the variability study.

Number 2: It was rewarding to spend a beautiful fall day “inside” at the old UVA Hospital — with the awesome team of researchers, doctors, nurses and clinical trial coordinators. These folks are first-class and extremely talented. A sincere “Thank you” to Dr. Anderson, all of the nurses and staff at the Clinical Research Unit, and the CDT team (Laura, Mary and Molly).  And they served me a fabulous Salmon lunch when I was done!

Number 1: My blood data, CGM readings and insulin pump trend lines will be reviewed and the numbers will be crunched by the CDT team at UVA. I am contributing to a larger, multi-layered, worldwide consortium effort designed to bring the first-ever Artificial Pancreas to the commercial market — and thereby providing better health outcomes and an improved quality of life for the 3 million Americans living with Type 1 diabetes. Laura Kollar, clinical research coordinator and RN with CDT team, added this wrap up to my visit: “Just wanted to thank you (and your amazing blood) for the admission yesterday. You done good!”

It may not be newsworthy, but it’s a worthwhile contribution. Call it a legacy. Together, We R the Cure.

Here are some ” BIG PICTURES” of my day in my hometown, Charlottesville.

The Clinical Trial is done at about 4 pm and I can enjoy a beautiful fall afternoon and a Starbucks coffee in Charlottesville, my hometown.

Keeping track of the blood glucose ” highs and lows” during my Clinical Trial at UVA.

My blood samples are lined up at UVA Hospital during Clinical Trial on November 7. It looks like a lot but the total volume taken is about the same or less than a normal blood donation.

Automated blood machines are used to analyze and report on my blood glucose levels and other key metabolic factors during my in-patient admission.

Another Step To An Artificial Pancreas And Better CGMs: Spending The Night at The Duke House, “Sunnyside,” In Historic Charlottesville

This week I’ve started a new clinical trial at the UVA Center for Diabetes Technology in Charlottesville. It carries an impressively long scientific study name: Biobehavioral Mechanisms of Glucose Variability. Impressive, right? The purpose of the study is to investigate how blood sugar changes in response to insulin and what the body does to counter-act low and high blood sugar in people with Type 1 diabetes. The month-long study, funded by the National Institute of Health (NIH),  ends with an in-patient stay at UVA where my blood sugar will be raised to 250 mg/dl and then lowered ( using additional insulin) to a hypo level less than 65 mg/dl. (Insulin Sensitivity is the term used to describe these changes in the body).

There’s also a hidden surprise in this study — testing a new piece of Continuous Glucose Monitoring ( CGM ) technology designed to work in tandem with the new Artificial Pancreas closed-loop system. But, I’m getting ahead of the story.  I will post updates on my clinical trial starting this week and until the trial ends in November.

The Duke House, ” Sunnyside” built in 1800

My trip to Charlottesville for Day 1 of the trial included a nice surprise for me — an American history lover and a native of Charlottesville. Prior to my Saturday morning health screening,  I was allowed to spend the night at The Duke House, also known as “Sunnyside”  on Barrack’s Road located on the North Grounds. The house is owned by the University of Virginia and is presently used as a guest house for participants in the Diabetes Center for Technology clinical trials.

The original section was built about 1800, as a 1 1/2-story, two room log dwelling. It was expanded and remodeled in 1858, as a Gothic Revival style dwelling after Washington Irving‘s Gothic Revival home, also called Sunnyside. The house features scroll-sawn verge boards, arched windows, exposed beam ceilings, and a fieldstone chimney with stepped weatherings and capped corbelled stacks topped with two octagonal chimney pots.

I was welcomed to The Duke House by Dr. Sue Brown and Laura Kollar, RN, for the Center for Diabetes Technology at UVA. As I settled in for sleep late at night in the charming old house — which does have all the modern amenities — I did wonder if it would be the perfect setting for the TV show ” Legend of Sleepy Hollow.” Fortunately for me, it was only the small feet of mice that could be heard running in the walls and the halls. Or maybe it was a Type 1 D searching the kitchen for a juice box?

The original house was a log cabin built in 1800s by the Alpins family and the Sunnyside property is one of the oldest in Albemarle County. It also contains the remains of the 1806 County Poor House and was purchased the The University of Virginia in 1963 — the same year my father graduated and I celebrated by second birthday — to become a part of the North Grounds expansion.

My thanks to the UVA team for letting me stay here. It was an interesting and unexpected coincidence to spend a night in The Duke House, the night before the Duke University football team played UVA at nearby Scott Stadium.  Sometimes, life comes full circle and it was nice to be back spending a night in my hometown.

Next Post: My pre-clinical trial health screening at Barringer Hall, a part of the original UVA hospital and the old maternity ward — where I was born just a few years ago.