Tag Archives: diabetes

All about podcasts (not mine).

December 16, 2015 – 11:40 am

As the headline implies, this post is about podcasts, but not my own. I was actually thrilled and honored to be part of two of them. And the other one hasn’t happened yet, but I am very excited about the idea. Here goes:

Have you heard of the Everybody Talks podcast? From TuDiabetes, the podcast delves into many of the facets of life with diabetes, with really interesting people. I was so happy to join Corinna Cornejo to introduce and recap Emily Coles’ conversation with diabetes nurse, CDE, advocate, and researcher Jane K. Dickinson. Jane has been researching the many words that affect people living with diabetes, and their effects on our psyche and the management of our diabetes. It’s a fascinating discussion, and I encourage you to take some time to listen to it. If you’re a healthcare professional of any kind, you will find this talk a treasure trove of useful information that will help you communicate with diabetes patients better than ever before.
CLICK HERE to listen.
 
 
I really feel like I hit the big time this week, when I was interviewed by Christopher Snider for his Just Talking podcast. The first half of that conversation might be a little difficult to listen to… as the interview went on, my BGs were going lower and lower until I finally had to take a break and treat a 59. I can hear myself really straining for every word there for a bit.

Anyway, it was a terrific hour spent with someone I admire and respect a great deal. We talked about this blog, how I found the Diabetes Online Community, how the idea to give away medals to athletes with diabetes came about, and also my podcast, Diabetes By The Numbers. It’s available right now via iTunes, Stitcher Radio, and at justtalkingpodcast.com.
Or CLICK HERE to listen to the full interview.
 
 
Finally, a quick note about a great idea. This is my way of trying to help spread the word about Diabetes Podcast Week, which is coming up in February! Stacey Simms of the Diabetes Connections podcast came up with the idea, and we’ll all be producing podcasts to air during the week of February 1. Even better, each podcaster will be leading the charge in encouraging everyone to join the Partnership for Diabetes Change in supporting the annual Spare A Rose, Save A Child campaign.

I am very much looking forward to participating with the rest of my fellow diabetes podcasters (am I really allowed to say that after 9 episodes?) on this worthy endeavor. Mark your calendars for February 1!
 
 
While I’m at it, let me just throw out a reminder that if you have something diabetes-related you’d like to talk about; or, if you know of a good diabetes story that should be told, send me an e-mail by clicking on the E-mail Stephen link in the upper left corner of this page. Talk to you soon!
 

By StephenS | Posted in Social Media | Also tagged , , , , , , | Comments (0)

Will my pump get hacked? Maybe not. But my phone? Maybe.

December 8, 2015 – 9:38 am

Once again, the U.S. Food and Drug Administration is inviting us to a public workshop… this time, in January, to talk about cybersecurity and our diabetes devices.

What? Who would want to hack my insulin pump?
2016Workshop
The truth is, probably no one. But as we know all too well, the world is more complicated than that. Especially lately.

Are you using a CGM? Is it the new Dexcom G5? Is it something else that is using a wireless signal to send data to an insulin pump, a watch, or a smart phone? Ever want to use something like that?

What about uploads? Do you upload data to DiaSend or some other website? Does your provider? Do they download from one of those sites?

Guess what? All of that can be hacked.

That’s what I’m worried about. Now that we have Bluetooth-enabled devices, and we’re able to start to see personal medical information on our phones, how do we protect ourselves? How do we engage both device makers and FDA to better protect us in the event something is compromised?

Let’s face it: maybe the question isn’t “can it be hacked?”; maybe the question should really be “what do we do if my device gets hacked?”.

I’m not in favor of backing up the trolley on innovative ways to view and use our data. But I think it’s smart and altogether appropriate that FDA is bringing people together to talk about it. I don’t want to not have the latest and greatest technology available to help me live a better, healthier life. But I think it makes sense to define protocols for how to react when/if someone gets access to something they’re not supposed to have access to. How do we protect ourselves? It’s a classic “fail to plan, plan to fail” scenario.

Just off the top of my head, I have questions about whether makers will be properly educating users about risks of a data breach, and how safe or vulnerable their device is to attack (while at the same time not scaring the bejeezus out of patients—it’s a fine line). Also, if my phone is hacked, what’s the protocol for how to react? What are the steps we should take in the event of someone hacking our phone and stealing our personal health information?

I know what some of you might be saying: it’s up to the phone maker to deal with that situation. True, in part. But what if a hacker is using the Bluetooth signal coming from my CGM to hack into my phone? If that happens, what is the manufacturer’s plan to address this and limit interruptions or theft of information?

I’m not really worried about someone hacking my diabetes devices. I am really worried about someone hacking my health information, either through an upload site, a smart phone, or by some other means. And really, I’m worried about whether anyone, anywhere, has any plan to deal with that if it happens.
 
 
If you want to know more about this two day public workshop, or register to attend, just click on the image above.
 

By StephenS | Posted in Advocacy | Also tagged , , | Comments (2)

Diabetes By The Numbers: Mary Beth Withers Wyss.

December 1, 2015 – 9:33 am

Mary Beth Withers Wyss has been living with Diabetic Macular Edema for some time. She went through a two year clinical trial of an experimental drug designed to treat DME. She talks about her experience, about why clinical trials are perfect for a patient like her, and even why she is still a Cleveland Browns fan (to put the timeline into perspective, this was recorded before the Cincinnati Bengals had lost a game this season, and now they have lost two).

Mary Beth frankly talks about the difficulties of living with DME, and living with the fact that the best treatment available to her involves injections directly into her eyes.

Want to know about Diabetic Macular Edema from someone who’s been there? Want to know about clinical trials designed to find a viable treatment for DME? Then you’ll want to listen to this podcast.
DBTN
 
Reference Material – Click below for more information on this topic

Learn more about diabetic macular edema (and other diabetes-related eye diseases), and find out more about the center where Mary Beth was treated during her clinical trial:

National Eye Institute – Facts About Diabetic Eye Disease

Ohio State University department of Ophthalmology and Visual Science
 
 
©Stephen Shaul

By StephenS | Posted in Diabetes By The Numbers | Also tagged , , | Comments (1)

Thanksgiving 8 (plus one)

November 25, 2015 – 8:32 am

Another Thanksgiving is upon us here in the USA, and it’s natural to sit down and consider what we should be thankful for. Especially if we write a blog. It’s been a crazy, busy, up and down kind of year, but when it comes right down to it, I still have much to be thankful for.  In no particular order, here are Eight (plus one) reasons I’m thankful this year.
8
– First and foremost, I’m thankful to family that puts up with me as I am, and continues to support me in ways big and small. I’m grateful to my wife, a person who drives downtown late on a Friday night to pick me up instead of waiting at home for me to return on the subway. That’s just one of the many things she does for me, all the time.

– As usual, I’m thankful for insurance that allows me to pay for test strips, infusion sets, insulin, and doctor visits. Even if though I’m still paying too much.

– I’m thankful for this space to share my thoughts and what I’ve learned and experienced while living with diabetes. And I’m incredibly grateful to anyone who still comes here to read it. You know who you are.

– I’m incredibly thankful to organizations like Diabetes Hands Foundation, Diabetes Community Advocacy Foundation, Diabetes Patient Advocacy Coalition, JDRF, and the American Diabetes Association for persuasively advocating more, and in bigger numbers, than I could ever muster on my own.

– I’m thankful to all you crazy bike riders who cover as much as 100 miles in a single day, while raising millions of dollars for research toward a cure. You know who you are.

– I’m thankful for gatherings that allow me to meet new friends and extend existing friendships due to nothing more and nothing less than having a permanently vacationing pancreas. Diabetes UnConference, I love you.

– I’m thankful for People With Diabetes, famous and not-so-famous, who inspire me and have shown me that there is life, wonderful life, after diagnosis.

– I’m also thankful that I got to spend a few days in Brussels at the end of a business trip in February, experiencing all of the grand architecture, good food, and lovely people of a city that now has a very different look to the rest of the world. Trust me, what you’re seeing on the news is not the Brussels I discovered.

– Finally… though it sounds redundant, I’m thankful that there’s an actual Thanksgiving in the USA. If there wasn’t, there would probably be years when I would completely forget to stop and enjoy and actually, you know, be thankful for the many, many great things in my life.

Whatever your life looks like right now, I hope that this Thanksgiving brings you health, hope, and happiness. And I hope that next Thanksgiving is the first Thanksgiving without diabetes. Hey, I can dream, can’t I?

What are you thankful for this year?

By StephenS | Posted in Additional Inspiration | Also tagged | Comments (1)

Diabetes By The Numbers: Dr. Vivian Pao (Part 3)

November 20, 2015 – 9:54 am

I’m so grateful to my endocrinologist, Dr. Vivian Pao, for taking the time to speak with me on the complex relationship between a diabetes patient and their endocrinologist.

This is the third and final part of our talk, and in this episode, we talk about the importance of being honest with your endo, and what keeps her up at night.
DBTN
 
Reference Material – Click below for more information on this topic
Learn more about endocrinologists, read research and updates, and even search for an endocrinologist by clicking on one of the links below:

American Association of Clinical Endocrinologists

Endocrine Society

Pediatric Endocrine Society
 

By StephenS | Posted in Diabetes By The Numbers | Also tagged , , , | Comments (0)