20 posts tagged “type 1 diabetes”

Member Chris finds the uplifting side of type 1 diabetes

Posted February 23rd, 2017 by

“I am the only 7-fingered diabetic record-holding powerlifter and motivational speaker you know!” Chris (ChrisRuden) says in his profile. He was born with two fingers on his left hand and a shorter left arm. He was bullied in high school, and he struggled with depression, alcohol and drug use.

Chris was diagnosed with diabetes at age 20, when he was in college studying law. His diagnosis inspired him to shift his focus to health and wellness (personally and professionally), and he earned a degree in Exercise Science and Health Promotion from Florida Atlantic University. He runs an online nutrition and fitness coaching business and he published an e-book called The Art of Losing Body Fat. He holds four state records in powerlifting (with one hand)! He is also a motivational speaker who has given talks at schools, businesses and organizations like the American Diabetes Association across the U.S.

We recently caught up with Chris about his interests, overcoming adversity and the upshot of his diabetes diagnosis.

What are your three favorite things to do? What do you love about them?

I love powerlifting, speaking and helping people get in shape! Powerlifting allows me to compete against myself and push my limits. Learning to lift properly as an amputee and learning to stabilize my blood sugar while lifting with diabetes was tough. But I love the challenge and satisfaction of working towards a goal and achieving it – no matter how long it takes. Speaking is my passion because I get to share stories that help people overcome hardships in their lives. Speaking allows me to be honest and real with the audience. There is nothing better than people writing me months after a talk or seminar about how they are still motivated and fueled by my talk. Helping people get in shape online is my business, but it is also my passion. I know what it is like not to be confident in your body, and I get the chance to help people with that mental and physical struggle daily.

How did growing up “being different,” as you say in your profile, shape your life? Has it helped you adjust to life with diabetes?

I was bullied and picked on for being different. I tried to stay strong as much as possible but it was hard and depression did get to me. It took a while to figure out that other kids or teens who would make fun of me for something I can’t control probably have a lot of personal issues they are dealing with. I focused on doing the best I could with what I had, and that philosophy carried over into my diabetes management. I was mentally prepared to handle the burden of diabetes because I knew it took the right mindset to thrive.

Could you share your diabetes diagnosis story with us? Why do you consider your diagnosis “the best thing to ever happen” to you? 

I was actually working in the ER at the time I was diagnosed. Weeks prior, I had been going to the bathroom 20+ times a day and I was so thirsty and irritable. My mom worked for a urologist in the same building so we did a urine test just in case, and I was admitted to the hospital with a blood sugar of 510. If it weren’t for diabetes, I would’ve never switched my major from law to exercise science, I wouldn’t be working with other type 1’s in the community, and I wouldn’t have found my true calling in life.

It seems like defying limits is a big theme in your life. What are some limitations that you’ve shattered? What motivates or inspires you to live this way?

Limits are problems and all problems have solutions. I have broken a few state records in powerlifting, deadlifting over 600lbs when the original limit was thought to be: “I can’t deadlift because I’m missing a hand.” Playing drums by sticking a drumstick through a glove finger hole was another limit. I also shoot guns, go fishing and occasionally rock climb. Some might see that as overcoming limits; in my case I just call it living.

What advice do you have for someone dealing with multiple health issues or going through a rough patch with their health?

Keep going. Think logically on what you can do on your part. Do the best you can with what you have where you are right now. By focusing on what you can control and not what you can’t control, life becomes a little more clear.

As a new member, what’s your experience on PatientsLikeMe been like so far, and what are you most interested in learning more about going forward?

I love the community and I’m really interested in just learning about other peoples’ perspectives and how they manage daily. I love to see people succeeding, regardless of how big the success or how hard the obstacle.

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Christel’s story

Posted December 10th, 2015 by

Last month, we introduced Christel, a member of your 2015-2016 Team of Advisors living with type 1 diabetes. Here she talks about the important role peer support has played in her journey.

Here’s her story:

 
You can see how much good data can do. During the month of December, we’re celebrating #24DaysofGiving. Any data you share on the site will go toward a donation of up to $20,000 by PatientsLikeMe to Make-A-Wish Massachusetts and Rhode Island to help fund life-affirming wishes for seriously ill children.

 

 

Data for you. For others. For good.

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PatientsLikeMe Encourages Sharing of Health Data for Good with 2nd Annual “24 Days of Giving”

Posted December 1st, 2015 by

The Gift of Health Data Can Help Others, and Advance Research

CAMBRIDGE, MASS., December 1, 2015—On this #GivingTuesday, PatientsLikeMe is once again celebrating “the new tradition of generosity” by encouraging people to donate something unusual but vital: their health data. Starting today and continuing for #24DaysofGiving, PatientsLikeMe is asking anyone who is living with a chronic condition to donate their health data after donating to their favorite non-profit.

PatientsLikeMe is a patient network that aggregates the health data members share so that others can see what’s working for patients like them, and what’s not. Health data includes information about a disease or condition—how people live with it, what their doctors are doing to treat it, and what it’s like to navigate their health journey. PatientsLikeMe also analyzes the donated data to spot trends in specific diseases and works with partners to incorporate patient-reported evidence in their research. Partners can then create new products and services that are more in tune with what patients experience and need.

Michael Evers, Executive Vice President of PatientsLikeMe’s Consumer and Technology Group, said that members donated a record amount of health data last year, the first time the campaign was introduced. “Tens of thousands of new and existing members answered the call by contributing treatment evaluations, symptom reports and other health updates. But they didn’t stop on the first day of giving. They shared their data over the course of the entire month, and continued to do so this year. I hope others will join us again so that everyone has the best information to make decisions, and we can continue to bring real-world perspectives to research.”

PatientsLikeMe plans to give back in several ways during the campaign. While it returns study results back to participants as quickly as possible, the company will once again showcase some of the most important research that has benefited from patient data in the last year and beyond. It’s also making a donation of up to $20,000 to Make-A-Wish Massachusetts and Rhode Island to help fund life-affirming wishes for seriously ill children.

Members use PatientsLikeMe for a range of reasons. For some, tracking their condition is the most vital. Allison talks in this video about living with bipolar II, and how she uses PatientsLikeMe to track her moods. “I haven’t had any episodes in the last five years because I have the data to link all the pieces together. I’m prepared because of PatientsLikeMe.”

Gus, who was recently diagnosed with amyotrophic lateral sclerosis (ALS), contributes his data to make sure others like him have a game plan for living with the condition. “The person who has just been diagnosed isn’t thinking about anything else. Their head is spinning. I want to create a manual so that others can understand what’s working for me and anyone else living with ALS, and make educated decisions to improve their quality of life.“

“24 Days of Giving” will be active across PatientsLikeMe’s Twitter and Facebook social media channels through December (#24DaysofGiving). Anyone who is living with a chronic condition can create a profile on PatientsLikeMe and start tracking their symptoms, treatments and quality of life. Existing members are encouraged to keep their profiles up-to-date or complete a new treatment evaluation. To learn more, go to www.patientslikeme.com.

About PatientsLikeMe

PatientsLikeMe is a patient network that improves lives and a real-time research platform that advances medicine. Through the network, patients connect with others who have the same disease or condition and track and share their own experiences. In the process, they generate data about the real-world nature of disease that help researchers, pharmaceutical companies, regulators, providers, and non-profits develop more effective products, services, and care. With more than 380,000 members, PatientsLikeMe is a trusted source for real-world disease information and a clinically robust resource that has published more than 70 peer-reviewed research studies. Visit us at www.patientslikeme.com or follow us via our blog, Twitter or Facebook.

Contact
Margot Carlson Delogne
PatientsLikeMe
mcdelogne@patientslikeme.com
781.492.1039


Meet Christel from the PatientsLikeMe Team of Advisors

Posted November 29th, 2015 by

We wanted to take a minute to introduce you to Christel, one of your 2015-2016 PatientsLikeMe Team of Advisors. Christel who was 12 years old when she was diagnosed with type 1 diabetes, shares openly that she spent a lot of her teens and twenties ignoring its existence.

But 32 years later, Christel has made peer support and advocacy her focus. She’s founded a psychosocial peer support conference for adults with diabetes (and caregivers, too) and co-founded an advocacy organization for easy and effective diabetes policy advocacy. Christel also writes a popular patient blog, ThePerfectD.com, and speaks publicly about her experiences.

In a recent interview (below) she talks about societal stigmas surrounding diabetes and how important it is to connect with others who share this condition.

What has been your greatest obstacle living with your condition, and what societal shifts do you think need to happen so that we’re more compassionate or understanding of these challenges?

Society thinks that diabetes is a punchline; something that shouldn’t be taken seriously.

We need to stop making fun of diabetes. All those pictures of desserts with the hashtag #diabetes? People with diabetes aren’t laughing. In fact, it only perpetuates the ignorance.

Those who are diagnosed often don’t get the proper education and care they need, and don’t talk about it, as the stigma surrounding diabetes due to misinformation prevents us, as a society, to address how to support people with this disease.

Until that changes, the increase of diabetes diagnoses will continue. The latest statistics show that 1 in 3 U.S. adults could have type 2 diabetes by 2050 if we don’t change our attitude and educate the public on what diabetes is, what it isn’t, and what can be done. (And the number of type 1 diabetes diagnoses are also increasing, although we don’t know why.)

What needs to happen? Education, compassion, and a willingness to speak up when someone makes a joke about diabetes.

How would you describe your condition to someone who isn’t living with it and doesn’t understand what it’s like?

29 million Americans have a diabetes diagnosis (that’s 11% of the population!) and 86 million more have a pre-diabetes diagnosis, yet there is a lack of true awareness about what the disease is and the gravity of a diabetes diagnosis.

Type 2 diabetes is a metabolic disease. Individuals diagnosed have issues with the insulin they produce; not enough insulin or a resistance to the insulin they do have. People with Type 2 can manage their diabetes a number of ways: diet, exercise, oral medications, and insulin – or a combination of any of these.

Type 1 diabetes (which I have) is an autoimmune disease, and we comprise about 5% of the diabetes community. My body attacked the insulin producing cells in my pancreas, so I must inject insulin to manage my glucose levels. Without insulin, bluntly stated, I’m dead within a few days (if not sooner).

Even with insulin, I walk a fine line every day attempting to keep my blood glucose levels in range. Too much insulin in my body and the consequences can be immediate: mild impaired cognitive function to seizures, coma, or death. But too little? The consequences can be just as devastating: long-term complications and/or the poisoning of my body through ketoacidosis.

I’ve oversimplified these two main types (there are other types of diabetes!), but here’s what shouldn’t be oversimplified: insulin is not a cure, you cannot “reverse” or “cure” diabetes (you can maintain), you don’t get diabetes from being fat, you don’t get diabetes from eating too much sugar, and if you ignore your diabetes, the complications are deadly.

If you could give one piece of advice to someone newly diagnosed with a chronic condition, what would it be?

Grieve.

It’s perfectly acceptable to fall apart and mourn the life before your diagnosis – and your caregivers should do the same. You can ask: “Why me?” and shake your fist at the sky.

There will be plenty of time to be brave and courageous and inquisitive. Get the grief out of the way first. Don’t put it off or deny it as I did, years after my diagnosis, because grief is inevitable.

But don’t get stuck in your grief. Find others who can help and support you and guide you through your next steps in the journey.

How important has it been to you to find other people with your condition who understand what you’re going through?

Diabetes can be a lonely disease. For years after my diagnosis, I didn’t know another person with type 1 diabetes and wished that I could talk to someone about the daily challenges and the fears.

The Internet opened up my world and gave me confidantes, compatriots, and support from all over the world. Without the ability to get help online and share my thoughts and experiences, I truly believe that I would not be living well with diabetes today.

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World Diabetes Day: Act today to change tomorrow

Posted November 14th, 2015 by

Diabetes affects almost 400 million adults[1] around the world and contributes to nearly 5 million annual deaths[2]. November is American Diabetes Month, but on November 14, the entire world joins together to unite their voices against this disease on World Diabetes Day (WDD).

It was started back in 1991 by the International Diabetes Federation (IDF). And today, WWD is the world’s largest diabetes awareness campaign reaching a global audience of over 1 billion people in more than 160 countries. The campaign draws attention to relevant issues within the diabetes community and this year’s theme is “act today to change tomorrow,” with a focus on healthy eating habits and the importance of access to healthy, affordable food in reducing the global burden of the disease.

There are many ways to get involved – and stay involved year round – listed on the WDD site. How are you showing your support for those touched by diabetes this November, or in the months ahead? Share your awareness efforts and experience with diabetes in the PatientsLikeMe forum and connect with the almost 2,500 PatientsLikeMe members living with type 1 diabetes and nearly 18,000 members living with type 2 diabetes.

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PatientsLikeMe Names 2015-2016 Team of Advisors, Sets Focus on Redefining Patient Partnerships

Posted October 19th, 2015 by

Cambridge, MA, October 19, 2015—PatientsLikeMe has named 14 members to its patient-only 20152016 Team of Advisors and challenged them to work through an issue that’s central to everyone in the healthcare system: how to redefine patient partnerships. The team will be focused on rethinking what it means for patients to be partners, and on establishing new ways for the healthcare industry to connect with patients to deliver better care.

PatientsLikeMe CEO Martin Coulter said that in an era when patients must be front and center in healthcare discovery and development, the group’s mission is vital to every patient, pharmaceutical company, regulator, payor and provider. “This advisory team includes some of the strongest patient advocates we have ever met. Their experience can empower other patients, and help those serving patients understand what it means to be a good partner. The team’s work will help create a stronger foundation for a more equal and participatory system of care.

More than 1,400 PatientsLikeMe members submitted applications for this year’s Team of Advisors. Those selected represent a range of medical and professional backgrounds and ages. The nearly equal mix of men and women are living with a cross-section of conditions, including amyotrophic lateral sclerosis (ALS), bipolar II, cancer, Type 1 diabetes, fibromyalgia, idiopathic pulmonary fibrosis (IPF), lupus, major depressive disorder (MDD), multiple sclerosis, Parkinson’s disease and post traumatic stress (PTS). Members named to the team include: Christel Aprigliano, Craig Braquet, Jeff Demers, Cyrena Gawuga, David Gewirtz, Phyllis Marchand, John Michael, Gus Prieto, Laura Roix, Patti Sanner, Allison Silensky, Angela Stogner, Doug Thornburg and Peggy Zuckerman.

Christel Aprigliano is living with Type 1 diabetes and believes that the key to a good partnership is a focused, data-driven discussion on what matters most to patients. “Patient reported outcomes are crucial to the healthcare conversation. The more information we can share about what life is like for patients every day, the more questions we can ask each other, and the better we can help patients live well with the disease they have.”

The 2015-2016 Team of Advisors recently kicked off their 12-month collaboration with PatientsLikeMe in Cambridge, Massachusetts, and will convene several times in the coming months. This is the second Team of Advisors the company has formed. Last year, the inaugural group provided feedback to the research team and published a best practices guide that outlines new standards for how researchers can meaningfully engage patients throughout the research process.

About PatientsLikeMe
PatientsLikeMe® (www.patientslikeme.com) is a patient network that improves lives and a real-time research platform that advances medicine. Through the network, patients connect with others who have the same disease or condition and track and share their own experiences. In the process, they generate data about the real-world nature of disease that help researchers, pharmaceutical companies, regulators, providers, and nonprofits develop more effective products, services and care. With more than 350,000 members, PatientsLikeMe is a trusted source for real-world disease information and a clinically robust resource that has published more than 60 peer-reviewed research studies. Visit us at www.patientslikeme.com or follow us via our blog, Twitter or Facebook.

Contact
Margot Carlson Delogne
PatientsLikeMe
mcdelogne@patientslikeme.com
781.492.1039


“Focus on making small but meaningful changes” – an interview with Amy Campbell

Posted March 25th, 2015 by

Amy Campbell is a registered dietitian nutritionist and certified diabetes educator at Good Measures, a company that combines the expertise of dietitians with state-of-the-art technology to help people improve their eating and exercise habits. Before joining Good Measures, Amy worked for almost 20 years at Joslin Diabetes Center, an internationally recognized diabetes treatment, research and education institution.

Amy, you have an impressive background – former nutritionist at Joslin Diabetes Center and co-author of 16 Myths of a Diabetic Diet, just for starters. As a certified diabetes educator, you’re aware of the media buzz around the new cholesterol guidelines. What does this mean for people with type 2 diabetes – and those at risk for it?

Cholesterol guidelines have always been somewhat confusing. The Dietary Guidelines Advisory Committee, an expert panel that provides recommendations to the Department of Health and Human Services and the Department of Agriculture, has done their homework and really examined the evidence around dietary cholesterol. The good news is that, for the first time, the committee is really downplaying the role of dietary cholesterol. In other words, for most of the population, eating foods that contain cholesterol has little if any effect on blood cholesterol levels. This is great news!

Whether or not eating eggs affects our cholesterol levels is awfully fuzzy for many people. As both a dietitian and a health professional advisor for the Egg Nutrition Center, this probably comes up a lot. What’s the latest wisdom?

For many years, health professionals, including doctors and dietitians, advised their patients to limit or even avoid eggs due to their cholesterol content. But a number of important studies have shown that dietary cholesterol (cholesterol found in food) has little effect on blood cholesterol levels. In fact, the Dietary Guidelines Advisory Committee have dropped their recommendation that Americans limit their intake of cholesterol from foods, such as eggs and shrimp.

The data is a little less clear in terms of how dietary cholesterol might affect people who have type 2. But again, there’s no need to cut eggs out of a diabetes eating plan. In fact, if anything, eggs are a great addition because they are carbohydrate-free, rich in protein and low in saturated fat. Eggs provide many other important nutrients, as well, such as iron and vitamin D. Plus, they’re budget-friendly nutrients, as well.

Any specific suggestions for foods to eat or avoid if you want to reduce the level of “bad” (or lousy or LDL) cholesterol?

Although there’s some controversy surrounding saturated fat and how “evil” it really is, studies do show that this type of fat, found in red meat, cheese, whole milk and butter, for example, can raise LDL cholesterol levels. However, there are foods that can lower LDL cholesterol. These include foods high in soluble fiber, such as oatmeal, oat bran, beans, apples and pears. And foods rich in omega-3 fatty acids, like salmon, tuna, sardines, walnuts and flax seed can lower LDL levels as well.

Type 2 diabetes seems to be one of those conditions that’s closely related to lifestyle. Along with tips on nutrition, what else do your readers want in helping to manage their diabetes?

I’ve found that people who have type 2 diabetes want simple but straightforward suggestions on what they can do to live a healthy life with diabetes. Making changes to one’s eating plan can be difficult (we form our eating habits early on!), so practical pointers around food shopping, making nutritious meals and controlling portions are always helpful.

In addition, because getting and staying physically active is so important for people with diabetes, guidelines on how to fit activity into one’s daily life (like walking on your lunch break, for example, or using a resistance band while watching TV) are invaluable. Dealing with a chronic condition day in and day out can be stressful. Finding ways to reduce stress and to take time to relax is important. Finally, information is power. I encourage people who have diabetes to check their blood sugar levels – if not every day, at least a few times per week – to get a better understanding of how their food, activity and medications affect their diabetes control.

What about sleep? Have patients indicated that the condition seems to be associated with insomnia or sleep apnea?

Sleep is a big issue when it comes to diabetes. First, poorly controlled diabetes can keep a person from getting a good night’s sleep, especially if they’re getting up frequently to use the bathroom or get something to drink. Second, having type 2 diabetes increases the risk for sleep apnea, a serious condition whereby a person stops breathing for short periods of time while sleeping. And third, complications from diabetes, such as neuropathy, can also prevent a person from getting restful sleep.

Restless leg syndrome is another condition that interferes with sleep, and this condition is more common in people who have diabetes than in people who don’t. A lack of sleep can increase the risk of heart disease, obesity and even type 2 diabetes. Sleep deprivation can also do a number on your immune system, meaning that you’re more likely to get sick. Sleep experts recommend aiming for about 7 to 9 hours of sleep a night.

So, if you could come up with three top bits of advice for people who live with – or want to avoid – type 2 diabetes, what would they be?

Here’s my advice: First, focus on making small but meaningful changes to your eating plan (if you need to!). You don’t need to cut out carbs or go on some stringent diet. But aim to eat plenty of “whole” foods, including vegetables, fruits, whole grains and lean protein foods. Limit processed and fast food as much as possible.

Second, be active. If going to the gym isn’t for you, no worries. Go walking. Climb stairs. March in place when you watch television or talk on the phone. Physical activity is so important to help with blood sugar control. And third, take care of yourself. This means getting enough (but not too much) sleep, managing stress and making sure you have support from family, friends, co-workers or even an online community.

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Are you at risk for diabetes? Take the test

Posted March 24th, 2015 by

Listen up: if you’re living in the United States, there’s about a 1 in 3 chance you’ll develop diabetes over the course of your lifetime. But there are many ways you can lower your risk, which is why the American Diabetes Association (ADA) has recognized March 24 as Diabetes ALERT! Day. Today is about raising awareness for not only those living with diabetes, but those who can still make lifestyle changes to avoid developing it.

Diabetes is one of the most common health conditions in the United States – in 2012, over 29 million Americans (almost 10 percent of the U.S. population) had some form of diabetes (learn about types of diabetes here).1 It’s also estimated that in 2010, 86 million citizens aged 20 or older had prediabetes, which if left untreated, is likely to develop into type 2 diabetes in less than 10 years. Check out the infographic below for a quick snapshot of diabetes in the U.S., courtesy of the ADA and CDC.

Today, take the ADA’s type 2 diabetes risk test and share it with your friends, family and colleagues. It only takes a few minutes to answer the multiple-choice questions – you never know what you or someone else might discover from the results. And don’t forget to highlight your participation on social media through the #DiabetesAlert hashtag.

Many PatientsLikeMe members are living with diabetes – in fact, over 16,000 with type 2 and over 2,000 with type 1. If you’ve been diagnosed, join and share your experiences with the community.

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1 http://www.diabetes.org/diabetes-basics/statistics/


Recognizing diabetes in America

Posted November 7th, 2014 by

If you’re from the United States, chances are you know someone with diabetes – according to the American Diabetes Association (ADA), nearly 30 million Americans are living with diabetes, and many of them haven’t been diagnosed yet. That’s why November is American Diabetes Month. It’s all about raising awareness for both type 1 and 2 diabetes and educating everyone about risk factors, symptoms, healthier lifestyles and more.

Diabetes affects different people in different ways. For those living with type 1, the body doesn’t make enough insulin. And for people diagnosed with type 2, the body cannot use insulin properly. Type 1 is typically diagnosed in children, teens and early adults, while type 2 can be developed at any age. Check out the CDC’s infographic on the left to get a snapshot of diabetes in the United States.1

Managing blood sugar is a part of living with diabetes, and to help foster awareness, the ADA has created a “America Gets Cooking to Stop Diabetes” campaign and designated each day of the week for a specific activity. It’s a great way to get involved – check out the factsheet here.

If you’re sharing about American Diabetes Month on social media, add the #StopDiabetes and #AmericaGetsCooking hashtags. And if you’ve been recently diagnosed, visit the type 1 and type 2 diabetes communities on PatientsLikeMe – more than 17,000 people are sharing their experiences in the forum.

 

 

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1 http://www.diabetes.org/diabetes-basics/statistics/cdc-infographic.html


Results! PatientsLikeMe diabetes members share about challenges and concerns

Posted August 25th, 2014 by

Earlier this year, more than 450 PatientsLikeMe members from the type 1 and type 2 diabetes communities took part in a new survey from our partners at Kaiser Permanente Colorado’s Institute of Health Research. (Thank you all for adding your voices!) Members shared about everything from the day-to-day challenges of living with diabetes to the difficulties of communicating with their doctors.

 

This is real-world, patient reported health data doing good; helping others living with diabetes learn more from people just like them and showing researchers where to focus their efforts in the future. Click here to view the results.

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Diabetes, behavioral changes and a surprise donation: An interview with Melinda Maryniuk, MEd, RD, CDE, FADA

Posted March 17th, 2014 by


Diabetes Alert Day is just around the corner, and to get a jump start on raising awareness for this chronic condition, we recently caught up with Melinda Maryniuk. She’s the Director of Clinical Education Programs for the Joslin Health Solutions division within Joslin Diabetes Center. Her areas of special interest include nutrition, patient education, behavior change, and increasing access to quality diabetes education services. (Check out her full bio at the end of this post.) Melinda spoke with us about how she got her start in diabetes education, what she wished more patients knew and her philosophy behind behavioral changes.

Can you tell us a little about how you became interested in dietetic education?

Growing up, I had always seen myself as a schoolteacher. But when it came to choosing a major in college, my dad pushed me to be some kind of scientist (I don’t remember why) even though I was not particularly interested (or good at) the subject! After changing majors multiple times (medical technology…biology…) and feeling completely without direction – my mom asked me a really important question. What do you like to do most? When I answered “eat” – she suggested I consider being a dietitian. Taking a nutrition class in college for the fun of it got me hooked. It was a perfect blend of science (which turns out I really did enjoy when it came to food chemistry) and teaching.

During my dietetic internship, where about a year is spent in a medical center before taking the exam to become a “registered dietitian” (RD), I quickly learned I was not comfortable working with sick patients in inpatient settings. I wanted to keep people OUT of the hospital. Once I started working in the field of diabetes education 35 years ago, I knew this was the right path for me. I never thought of people with diabetes as “sick” – but just having to be a little more intentional about making healthy food choices.

Looks like you’re also a believer in behavioral change. Can share what that means for the patients you work with?

We are all responsible for our day-to-day health care. We make hundreds of decisions each day that may affect our health. We choose to smoke or not smoke. Brush and floss our teeth. Choose healthy foods. Wear seat belts. Keep our weight in check. Be physically active. Have annual check-ups with our doctor. Take or not take the medicines (or vitamins or whatever) are prescribed to us. Much of what we do becomes automatic and we don’t even think about it. If you are generally “healthy” – you can make what might be considered poor choices without any immediate consequences.

When diagnosed with a chronic condition like diabetes, there are some behaviors that must be done (like taking insulin) in order to survive. There are some behaviors that should be done (like checking blood glucose) in order to reduce risks of serious problems. And there are some behaviors (like choosing healthy foods and being more active) that can lead to living a longer and healthier life. Thus, while adopting healthy behaviors is important for everyone, it is truly a matter of survival or at least greatly improved quality and length of life for people living with a health condition like diabetes.

When I first started out as a diabetes dietitian – I thought I had all the answers. I believed that if I could just tell people what to eat…they would stop eating the foods they loved that were not good for them and eat what I told them. I made up dozens and dozens of sample menus, lists of “dos and dont’s,” fancy handouts persuading people how to build-a-better-breakfast. I was recognized as a very creative and entertaining “teacher.” But while my “students” (patients) may have been “learning” something – they were not necessarily doing it.

So I changed my approach. I found that I became more effective when I followed the “ask-don’t-tell” philosophy of behavior change. Not telling the patient what to do…but asking them what they would like to do, how they think they can do it, how I could be of help and working with them to create reasonable action steps to actually do it. I believe for people to be successful in making changes in their behavior, they have to settle into an understanding of why that change is personally important for them to make. And then break it down into small steps. Having a healthcare provider, diabetes educator, coach or just a supportive family member or friend (even within an online community) can help see that intention to change – become a lasting behavior change.

I’ve long been a big fan of this quote (directed to doctors) from physician and philosopher, Albert Schweitzer, which also reflects this thinking: “Each patient carries his own doctor inside him. They come to us knowing this truth. We are at our best when we give the doctor who resides within each patient a chance to go to work.”

How do you see online communities like PatientsLikeMe contributing to patient education?

Online communities are a tremendous resource for people living with a wide variety of different health conditions. Research has shown you’re more likely to stick with the healthy behavior changes you make if you receive some kind of ongoing support. An online community is a perfect way to both offer and receive that kind of support. I love to see how these communities are growing to share ideas, tips, suggestions, practical advice and real-world experience. I think peer-to-peer support can be as valuable as reaching out to your healthcare team. That said, and while I’m very open to new therapies and sharing information, it’s still essential to have your primary care provider be part of your decision team for products and new paths you want to try.

There’s probably a lot you wish more people that are living with diabetes knew, but what would be your top three?

#1. Know Your Numbers. By that I mean, know the results of important lab tests and exams done for diabetes. Firstly, know what your A1C is, what it should be.. and if it is not where it needs to be, know what to do to get it there. Know what your blood pressure is…and what it should be. Other important lab test numbers to be aware of are your LDL cholesterol and a protein test to check kidney function. Have an annual dilated eye exam and make sure your feet are checked by your doctor to pick up any potential problems early. Being proactive in knowing your test results and making sure you and your healthcare team is taking action towards reaching target results helps you to live a long and healthy life with diabetes.

#2. If you’re not getting answers you understand, change up your healthcare team. If you feel frustrated with your physician, an important first step is to tell him or her what you’re looking for and how they could be more helpful. Sometimes people leave their doctor when what could have helped is just having the conversation of how to improve the relationship! Ideally, it is great to have more members on your healthcare team – like a diabetes nurse educator or dietitian – but that may not always be possible. However, you may be able to form a connection with a community pharmacist who is interested in diabetes that can also serve as a support and answer questions. Also, because diabetes CAN be hard…there may be times when it will be helpful talking with a professional psychologist or mental health counselor to help you navigate the stresses and challenges of living with a chronic disease. And surround yourself with people who are positive and supportive. Sometimes those closest to us don’t provide the support we need (or are misguided in how they are trying to “help”). Make sure you point out HOW they can be more helpful. And…this is a great place for online community support systems like PatientsLikeMe!

#3. Your diabetes treatment plan will change over time. Whether you have type 1 or type 2 diabetes, be prepared that the doses and types of medicine you take will change. That does not mean your doctor can’t figure out what is going on…or that your diabetes is getting “worse” – but your body can change and how it responds to different medicines can change. People with type 2 diabetes are often not prepared in their understanding that over time they will likely need to take insulin by injection. No matter what the medication regimen you follow, a healthy meal plan and regular program of physical activity is critical to helping the medicines work best. You need all three- diet, activity, medicines.

What do you wish patients knew that we haven’t asked you about?

Learning about diabetes is a lifelong process. You may have had it for quite some time and attended a class years ago. Know that there are always new things being learned. New discoveries. New medicines. New approaches to meal planning. Never stop learning and asking questions. Subscribe to a magazine like Diabetes Forecast (from the American Diabetes Association) or take annual diabetes refresher classes at your local diabetes education program. As Dr. Elliott P. Joslin, the founder of the Joslin Diabetes Center, said way back in 1934, “the diabetic who knows the most, lives the longest.”

And we just can’t pass up the opportunity to ask you about this one – Last October a donation was made by CheeseBoy in your name to the Greater Boston Food Bank. Can you share what that was all about? 

Ha! How did you hear about that?!? My sister picked up a flyer for a contest that Cheeseboy, a fast food chain was running in honor of their millionth grilled cheese sandwich being sold. She challenged everyone in our family to enter the contest – which was to write a (very) short essay stating to what group Cheeseboy should make a $10,000 donation – and why. I’d been thinking a lot about food insecurities and how (surprisingly) not having access to enough food in the poorer populations of our nation (and the world) is being increasingly linked with a higher risk of obesity and diabetes. It stands to reason. When a person has very little income the food that tends to be purchased tends to be low quality and high calorie (buying a super size soda can be cheaper than buying a bottle of water!) So, I wrote a 250 word essay to recommend a donation go to Feeding America – the nation’s leading domestic hunger relief charity. I didn’t realize at the time Cheeseboy is a Boston-based company so they asked if I minded for the donation to make an even bigger impact by giving it all to the Greater Boston Foodbank – that is part of the Feeding America network of charities. What a thrill it was to feel responsible for a donation of $10,000 to such an important organization that ultimately provides increased comfort and security for people who are at high risk for many health problems – including diabetes. And, as a bonus, I received a special card allowing me grilled cheese sandwiches for life! The ultimate in comfort foods!

About the PatientsLikeMe diabetes community

There are more than 14,000 PatientsLikeMe members currently living with diabetes, and many of them have been sharing their experiences and contributing to real-world research that could benefit their fellow diabetes patients. If you’re living with type 1 or type 2 diabetes, you can find others just like you on PatientsLikeMe. Track your own experience with a personal health profile, or share your story in the community forums to start living better together.

Join in today

More about Melinda Maryniuk, MEd, RD, CDE, FADA

As Director of Clinical Education Programs for the Joslin Health Solutions division within Joslin Diabetes Center Ms. Maryniuk oversees the clinical, educational and quality improvement activities for the 40 Joslin Affiliates and outreach programs. She also coordinates the education activities for the HealthCare Services Department, including several national diabetes education initiatives. Her areas of special interest include nutrition, patient education, behavior change, and increasing access to quality diabetes education services.

Ms Maryniuk has worked in the field of diabetes education for over 30 years and has lectured and published extensively for both patient and professional audiences around the country and internationally. She is active within the American Diabetes Association, having served on the Board of Directors, as chair of the Education Recognition Program Committee and is currently an Associate Editor for Clinical Diabetes. Within the American Dietetic Association, Ms. Maryniuk served as Chair of the Diabetes Care and Education Practice Group as well as Chair of the Division of Clinical Dietetics and Research of the Council on Practice. She is the recipient of the 2005 Outstanding Educator in Diabetes from the American Diabetes Association as well as the 2010 Medallion Award from the American Dietetic Association. She recently served as a Co-Chair for the task force to review and revise the National Standards for Diabetes Self-Management Education.

Melinda has a BS from the University of Tennessee-Knoxville and a MEd from Tufts University. She completed a dietetic internship at the Frances Stern Nutrition Center in Boston.


Diabetes and stress- What the PatientsLikeMe diabetes community has to say

Posted August 6th, 2013 by

Here at PatientsLikeMe, we believe that sharing healthcare experiences is good. Why? Because when patients share real-world data, collaboration on a global scale becomes possible. So, we wanted to share back with everyone some results from a recent diabetes survey that nearly 600 PatientsLikeMe community members took part in. Our members entered their responses to the 17-item Diabetes Distress Scale (DDS), which measures the amount and types of problems diabetes can cause in a person’s life.

Have you had an A1C test done in the past year? 
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Download the PDF  to check out the results summary.

Dr. William Polonsky, Founder and President of the Behavioral Diabetes Institute, and the co-creator of the Diabetes Distress Scale, shared his thoughts about diabetes and stress with the PatientsLikeMe community.

“I believe it’s important to understand the physical, behavioral and emotional sides of illness. Diabetes, in particular, is so highly dependent on what people do every day.  It is, therefore, almost all about behavior− how do you talk yourself into taking on new tasks and making changes in your lifestyle, some of them which may seem not so pleasant or worthwhile, that you’d rather not do.”

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If you’re living with type 1 diabetes, or type 2 diabetes, find others just like you in our growing communities on PatientsLikeMe. Learn what others are doing to manage their condition with symptom and treatment reports, and share your own experience with a personal health profile or in the community forums.


Living with diabetes: An interview with Dr. Richard A. Jackson

Posted June 18th, 2013 by

For many, living with diabetes can be an overwhelming experience that comes with serious health concerns including heart attack, stroke, kidney complications and eye problems. However, Dr. Richard Jackson thinks there is another reason diabetes patients may feel overwhelmed… the medical establishment. “A typical diabetes education program series might tell you 150 things, but that might be 148 things too many.”

Jackson

Dr. Jackson is Director of Medical Affairs, Healthcare Services, a Senior Physician and the former Director of the Hood Center for the Prevention of Childhood Diabetes at The Joslin Diabetes Center. He is an Assistant Professor of Medicine at Harvard Medical School. He has been studying diabetes for over 30 years, led the first National Institutes of Health clinical trial to study diabetes prevention, and works to find the most effective ways to get the best information out to the patients themselves.[1] National Diabetes Alert Day was not too long ago, and Dr. Jackson took some time to share his thoughts. Here’s just a snapshot of some of the questions he answered. Click below to hear the entire interview.

      1. Why are more people developing diabetes?
      2. What can I do to help someone I know with diabetes?
      3. Why is diabetes so overwhelming and what can be done about that?

 

If you’re living with type 1 diabetes, or type 2 diabetes, find others just like you in our growing communities on PatientsLikeMe. Learn what others are doing to manage their condition with symptom and treatment reports, and share your own experience with a personal health profile or in the community forums.

 


[1] http://www.joslin.org/diabetes-research/richard_a_jackson.html


Building a True Picture of Diabetes During American Diabetes Month

Posted November 5th, 2012 by

Get a Clearer Picture of Diabetes During American Diabetes Month This November

November is American Diabetes Month, and this year, the American Diabetes Association is working to reshape the understanding of diabetes.  The goal is to raise awareness of the fact that diabetes is life-changing disease with a huge societal impact – and not a minor hindrance, as some people think.

As part of this mission, the ADA is asking patients with type 1 diabetes and type 2 diabetes to send in a photo that captures what life with diabetes is like.  What are the everyday challenges and considerations?  Help the ADA build a mosaic of the “true picture of diabetes” and CVS will donate a $1 for every photo uploaded, up to $25,000.

Upload Your Photo of Life with Diabetes, and CVS Will Donate $1 for Each Photo.

Another way to get a clearer picture is to consider some of the alarming facts about diabetes, which is projected to affect as many as one in three Americans by 2050:

  • 26 million Americans are currently living with the disease
  • 79 million Americans have prediabetes, putting them at risk for type 2 diabetes
  • Two out of three people with diabetes die from heart attack or stroke
  • Diabetes is the leading cause of kidney failure and new cases of adult blindness
  • The cost of diabetes is $1 out of every $5 in total healthcare costs

If you are living with diabetes, or you’re at risk for developing it, connect with others like you at PatientsLikeMe.  There are more than 1,000 type 1 diabetes patients and more than 4,700 patients type 2 diabetes patients in our community who are sharing experiences with blood glucose controlsymptoms, treatments and more.

How do they evaluate common medications such as Metformin and Insulin Glargine?  How many have undergone a kidney transplant?  Who’s taking part in a diabetes-related clinical trial?  Exchange knowledge and support with those facing many of the same struggles as you.

A Snapshot of the Type 2 Diabetes Community at PatientsLikeMe

For an in-depth picture of a family affected by diabetes, check out our interview with kidney transplant recipient Michael Burke.