44 posts tagged “diabetes”

Food for Thought: July (chocolate) edition, take 2

Posted July 7th, 2015 by

Last year, July’s Food for Thought revolved around MS members sharing their experiences with chocolate. This year, we thought we’d continue the tradition – check out what a few members had to say about their relationships with the delicious sweet:

“I have been trying a dairy free diet for a couple of months due to me having a problem with milk protein which is an antigen to the lungs and acts like any other substance that can affect our breathing. I have a treat of dark chocolate now and again and have been grateful for a plentiful supply of dairy free products.”
-IPF member

“For me, I don’t deny myself a little sweet treat.  What I do deny myself is massive amounts of sweet treats. I buy a few high quality dark chocolates and allow myself one per day. Or I buy the sugar free mousse packs in the refrigerator section or the sugar free Jell-O puddings. They seem to work. I also make my own brownies and cookies using high fiber ingredients and sugar substitutes. I have been using Xylitol with good success too.”
-Diabetes member

“I will take a teaspoon or two of coconut oil (organic, extra virgin) and add to it a bit of cocoa powder and a drop or two of Stevia to sweeten.  It tastes like real chocolate. The coconut oil is firm and melts in your mouth just like real chocolate…I can hardly tell the difference.”
-Diabetes member

If you missed our other Food for Thought posts, read the previous editions here.

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Bruce Cooper and Ed Godber talk about the AstraZeneca/PatientsLikeMe partnership

Posted April 13th, 2015 by

AstraZeneca and PatientsLikeMe announced today that they’re working together to use patient-reported data to shape future medicines and help improve patient outcomes. While it focuses on an initial set of four therapeutic areas (lupus, respiratory diseases, oncology and diabetes) the partnership signals a significant step forward for patients worldwide. Bruce Cooper, AstraZeneca’s Senior Vice President, Global Medical Affairs and Ed Godber, PatientsLikeMe’s Executive Vice President of Life Sciences Ventures explain why.

What is this partnership designed to do?

Bruce Cooper: We’re focused more than ever on having patient-defined value drive our scientific developments. To do so, we need to understand more about what patients are experiencing day-to-day. Our partnership with PatientsLikeMe allows us to tap into a patient network with more than 325,000 members. Every minute of every day, they are using the website to track their condition and give others like them information and support. They’re also contributing data for research. Now, their shared experiences will become real world evidence that accelerates AstraZeneca’s R&D capability and delivers patient-centric medicines.

Ed Godber: Ultimately, we want to help AstraZeneca partner with patients so that patients shape the medicines of the future, those medicines lead to better outcomes, and patients can live the lives they want. It’s exciting to see how Briggs Morrison (Executive Vice President, Global Medicines Development, AstraZeneca) and his team have truly committed themselves to transforming the discovery and development process by focusing on what patients experience, and need.

How does this collaboration actually help patients?

Bruce Cooper: We have significant potential to accelerate an upgrade to the system by making the patient voice part of the DNA of life science processes, helping to generate evidence to support our R&D and drive our science. We want to better understand what is important to patients about all aspects of their condition and treatment, and then shape the profile of the medicines we discover and develop. And we want to empower patients to thrive to the fullest degree from this upgrade in how data is generated and shared.

Ed Godber: We’re really aligned on that point. PatientsLikeMe was founded more than ten years ago with a mission to put patients first, and to make their voice central to medical advances. We did that by enabling patients to learn from the experience of thousands of others like them, sharing important and varied information about their health in a way that is compatible with healthcare and research. We’ve already seen that this kind of sharing can improve patient outcomes and transform healthcare. So it’s important that we take “patientomics” to the next level. With AstraZeneca, we not only expand the network and data, but also develop the science and processes by which healthcare and discovery can be increasingly responsive to patient needs.

What’s the first thing you’ll focus on as you begin to work together?

Ed Godber: We have been able to quickly get into a rhythm of sharing innovation and best practice around how to integrate the patient voice into AstraZeneca’s R&D. From here, in the short term, we’ll work together to create a “how to” guide to incorporate patient centricity into the design and execution of our studies. The agreement is for five years, so we’ll continue to define and evolve what we focus on.

Bruce Cooper: I’m pleased to say too that we have begun to collaborate with clinical operations to integrate patient insights into trial design and execution. We also expect our medical strategies to be enhanced across our Therapy Areas. There are a number of areas that can benefit from the data that PatientsLikeMe generates, and I’m looking forward to exploring even more.

What does the future look like with this partnership in place?

Bruce Cooper: I see a world where patients are even more engaged in research, because they have greater access to it, and can shape the way we conduct research with them. I also see patients helping to shape the healthcare environment as a whole by bringing what’s important to them onto the government’s healthcare agenda, and even shaping the way healthcare is delivered in clinical practice in disease communities.

Ed Godber: We believe this can have a significant impact on the speed at which patients get the full value out of new and effective medicines in the real world, using all of the useful data about a patient’s experience at the right times in disease research, drug development, regulation, access and care.

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“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/


Food for thought: Diabetes awareness edition

Posted November 26th, 2014 by

It’s American Diabetes Awareness Month, and the American Diabetes Association’s (ADA) theme for November is “America Gets Cooking to Stop Diabetes.” And in that spirit, we’re highlighting the diabetes community on PatientsLikeMe. Members have been sharing about pasta, low-carb diets and ideas for daily menus. Plus, one member graciously shared her personal recipes for some of her favorite dishes – read them in the infographics below.

What’s the diabetes community sharing about?

Usually a meal of pasta and meat sauce in moderation a couple of times a month sopped up with toasted sourdough garlic bread (1 good slice) is usually enough to satisfy one’s pasta cravings. Provided you tow the line on everything else you eat you should recover from a pasta meal within 3 hours of eating it!
-Diabetic neuropathy member

I eat no starches. That is, no bread, no chips, no rice, no pizza, no potatoes, no tortillas. I severely restrict the amount of root vegetables I eat. Occasionally, I’ll have a little bit of beans. I eat very little fruit, maybe a slice or two of tomato on a burger or an occasional strawberry.
-Diabetes type 2 member

Instead of scrambled eggs, I make tofu scramble with veggies almost every weekend. Instead of store-bought cookies, I make my own gluten-free vegan version that not a single picky eater has been able to tell the difference. Instead of regular, white, flour scones, I make vegan teff-based scones with mixed berries.
Diabetes type 1 member

 

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And don’t forget to check out our other Food for Thought posts if you missed them.


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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Food for thought: May edition

Posted May 30th, 2014 by

Just last month, we shared about some of our community members’ favorite foods, and about how what they choose to eat can impact the conditions they live with every day. We heard from the fibromyalgia, type 2 diabetes and multiple sclerosis communities – and to keep the series going, we’ve got three new hot, or cold if you like a good scoop of ice cream, forum threads to share. (If you follow our blog, that hot/cold play just made you smile… again. ☺)

ALS forum thread: tips on how to gain weight while eating healthy?

“… the bottom line is that I need to put on weight. I eat organic foods when possible, no sugar and a little if any wheat.”

“I rely on high calorie fruit (but all are good) such as bananas, mangoes, blueberries, etc. I just blend them up (using one fruit) to make smoothies.” 

“You might try using Ensure, Boost or other nutritional food extras.” 

Idiopathic pulmonary fibrosis forum thread: Primal blueprint

“The basic premise is that we should be eating like our pre-agricultural ancestors and eliminate grains and sugars from our diet. I need to lose weight to get on the transplant list…”

“And it becomes very surprising to find out how wheat is found in many unexpected products.”

“Men do demonstrate the ability to lose weight quicker and faster than women … although I prefer the word ‘program’ to ‘diet’” 

PatientsLikeMe forum thread: Nutrition questions anyone?

“Someone mentioned to me, and I am wondering if it is a concern to others, that the skin of fruit nowadays might have too many toxins from sprays, etc. … do others that eat non-organic worry about that?” 

“Juicing is a wonderful way to gulp down the 10-20 servings of raw fruits and vegetables that many are encouraged to intake.

“My intestines are very sensitive to fibre, I would have to build up the fibre content very slowly, or they would go straight through me …”

Jump into one of these forum threads or you can always start your own with a favorite recipe, general diet tips that have worked for you or a question you think the community can help answer.


Food for thought: April edition

Posted April 15th, 2014 by

Everyone’s got a favorite dish (pizza is one of ours), and many PatientsLikeMe members share a bunch of their recipe ideas and foods in the forum. So, we’re going to start highlighting some of the hottest – or maybe the coolest, if you like gazpacho – conversations on the blog as part of a new “Food for thought” series. We’ll be featuring what people are saying in different condition communities.

So, what are people talking about this month?

Fibromyalgia forum thread: What did you make for dinner tonight?

“Leftover sage and rosemary soup, added mushrooms and scrambled egg batter. Stirred until cooked, added sea salt and pepper. Yummy!”

“Crock pot lamb shanks and salad.”

“A protein bar and yogurt – not hungry.”

Type 2 diabetes forum thread: High early morning blood glucose readings

Try having a low carb high protein snack at bedtime. This usually helps me have a lower reading in the morning. I have a really grainy piece of toast with peanut butter or cheese and it works wonders.”

“I eat my dinner at 4:30 or 5 p.m.  I also watch my carbs.  That helps me get the sugar down in the morning.

“At night for a snack and hour or so before bed I might have a piece of celery with peanut butter.

Multiple sclerosis forum thread: Different diets and reactions

“I have to say, the flavor of grass-fed beef is far superior to that of the ‘conventionally raised’ beef.”

“I have gone with the Mediterranean diet and it seems to have helped me physically. Not so much neurologically, though

Does any of that sound familiar? If you are living with fibromyalgia, diabetes type 2 or multiple sclerosis, join PatientsLikeMe and jump into a conversation in the forum, or start a new thread of your own. Sharing experiences has never tasted so good!


“I would just like to understand the ‘why’” – a conversation with PD community member dropsies

Posted April 14th, 2014 by

Right at the start of April, you might have seen us post on the blog that it’s Parkinson’s (PD) Awareness Month. And to keep Parkinson’s awareness going strong all month long, we’re sharing a recent interview with PatientsLikeMe member Betty – aka dropsies to those in the community. She was diagnosed with Parkinson’s back in 2009, but was experiencing symptoms since way back in 2005. And just at the start of 2014, she was also diagnosed with type 2 diabetes. Check out her interview below where she shares about her frustrating Parkinson’s diagnosis experience, how diabetes might impact her future eating habits and what she means by a family of ‘co-takers.’

Tell us about your initial diagnosis experience with Parkinson’s – on your PatientsLikeMe profile, you mention your symptoms aren’t “textbook” – what are they like?

My diagnostic tale has been long, complicated, and oftentimes frustrating, like many PWP experiences, and has yet to come to a medically-agreed upon final conclusion. I don’t care what it’s called. I would just like to understand “why” before I’m actually confined to life in a wheelchair.

After two years of thorough investigation, working with my PCP and including cardiac and rheumatology examinations, my neurologist eliminated many possibilities, with testing for lyme disease and lupus being repeated. The only confirmed diagnoses to be made were narcolepsy without cataplexy, a condition my history showed I’d had since childhood, but  escalated with menopause and restless leg syndrome (RLS).

Three years later, after aggressive treatment to control the narcolepsy and RLS, the unexplained issues continued to worsen. The increasing difficulties were with balance, loss of dexterity, freezing at step-ups, dystonia, shuffling gait, physical restlessness, exertion tremors with pronounced shortness of breath, full body muscle pain and stiffness, arms clinging to the body, and index or middle finger fidgeting the thumb, most presenting intermittently with no definitive pattern. I was referred to an MDS in May of 2009 who reviewed the battery of tests, labs, and imagery from the previous 5 years, conducted a clinical examination, waited 4 months and repeated the examination to conclude “an undefined movement disorder, prominent on the left, not rapidly progressing (therefore not of immediate concern) but probably early Parkinson’s Disease”. I was put back under the care of my primary neurologist with additional dosages of Mirapex, already being taken for RLS, and life continued on.

Within the year occasional episodes of Choreoathetosis greatly disturbed co-workers and friends, and as my lack of alertness became alarmingly severe despite an increase in Provigil, the Mirapex was reduced back to bedtime only. It was clear that treating my Parkinson’s symptoms was not going to be easy with narcolepsy. Under a new supervisor, my job duties were reviewed and adjustments made, but it was still a position that required a great deal of personal interaction, and eventually it was determined that I could no longer meet expectations. I was losing the ability to comprehend, think, and speak “in real time.” I moved back “home” and began the task of making a new and very different life.

My current PCP, who cautiously agrees it’s Parkinson’s, is very supportive and wants very much to improve my quality of life. I have been referred to two neurologists within the last 5 months, neither an MDS, but both, within the first 5 minutes of a single office visit and without my medical records, have dismissed the 2009 diagnosis with no further investigation planned, or even offered. One, who felt cog-wheel rigidity in my left wrist, said “it’s complicated,” but why no genetic testing, no PET or SPECT, and why wasn’t a trial of Sinemet given? The other said I don’t have resting tremor, he found no cog-wheel rigidity, and I show facial expression, so it can’t be Parkinson’s, so there’s no reason to try Sinemet.

It takes approximately 18 hours of continuous observation in a simulated home environment using standardized methodology to gather the data necessary to diagnose narcolepsy, so how can movement disorders, with such a wide array of possibilities and variations, be properly diagnosed in randomly performed clinical examinations generally lasting less than 45 minutes in total?

Your oldest son is now your caretaker, and you mentioned the difficulty of the role reversal, can you tell us about that?

It’s become more of a shared role between both my sons, although the youngest doesn’t live nearby.

It has taken time for all of us to adjust to the changes, and although it will be a continuing adjustment, what I thought I had lost as a mother is not lost after all. I came to realize that I still needed to hold on to being Momma. I had to see that I still have the opportunity to teach my children by example. And they had to realize they still needed me to lean on from time to time and to offer thoughts for their consideration when making decisions. Sure, some things have changed a little, but then the small stuff has always been a moving target.

Twenty-five years ago I’d stay in the car while my oldest went into the neighborhood store alone to make a purchase. Now I sit in the car while he goes into a store to make a purchase for me. So I sit in the car . . . nothing new, just different reasons. Fifteen years ago I’d tell my youngest it was a FYOS night because I had too much work to finish. Now I may tell him to help himself with whatever he can find, but I’m not feeling up to eating anything for a while. So he fixes his own supper . . . nothing new, just different reasons.

What I had to realize is that we are still what we’ve always been. We are family, co-caretakers of each other. We are learning to work together again, just as we did when they were still living at home. Only the reasons have changed.

You’re super active when it comes to filling out your health profile on PatientsLikeMe — how do the tools help you track your health, and what have you learned?

One thing that I have definitely learned is that once a symptom becomes a daily standard, I don’t necessarily notice or remember it unless it was severe or continuous that day. I may have a single incidence of freezing early in the day and if I don’t fall from it, or have a great deal of difficulty breaking loose from it, I completely forget about it by the time I do my symptom update.

I’m certainly learning there’s no predictability! I keep thinking that I’ll see some kind of pattern, but nothing has appeared as yet. I can have symptoms causing me great difficulty for weeks at a time and suddenly disappear for months before being noticed in the slightest again. And others are always with me, but other than the obvious, such as loss of coordination and falls, and stress effects, there’s no pattern or connection, even in the level of severity.

You’ve recently been diagnosed with type 2 diabetes. How has another diagnosis impacted your Parkinson’s and day-to-day life? 

So far it’s been a blessing. I put on a great deal of weight since I began this journey, and with little pleasures left to be enjoyed and apathy holding my focus to the simple pleasure of food, I needed a wake-up call! If I’m ever prescribed Sinemet or any Levodopa, I know I’ll have to reevaluate my eating plan to compensate for the protein conflict, but for now I’m trying to stay focused on controlling my diabetes and losing as much weight as I safely can.

It’s probably a first, but I was disappointed that I did not experience the most common side effect of my diabetic medication, Metformin. Both the doctor and the pharmacist gave stern warning that it causes severe diarrhea in the first few weeks. With the constant battle of constipation PWP endure, I was looking forward to it, but it never happened! No change in that situation at all.

Finally, April is Parkinson’s Awareness Month. You mentioned fitting into a world that ‘doesn’t know’ what it’s like. What would you like to teach people about Parkinson’s?

The most important thing from my perspective would be that Parkinson’s is not fully visible! Besides the mental and emotional changes caused by the altered state of brain neurotransmitters, there are other non-motor symptoms caused by Parkinson’s. Even tremors are not always “visible.”

One of my earliest and continuing issues is Akathisia, better known as internal tremor and restlessness. There are times that if what I feel could be seen, it would look as if I was holding a live electrical wire. I’ve day-dreamed of a torture rack and how wonderful it would feel to be stretched until it stopped. Thankfully, this level of severity is rare for me. It’s more subtle most of the time. It’s a feeling that doesn’t allow me to sit or stand still. Regardless of the fatigue and pain that builds, sitting to rest is worse. The only thing that brings any relief is to keep moving. If I stop in one place I rock. If I must sit I fidget until I can’t take it anymore and I get up and start pacing, stretching, moving! If it’s confined to just the arms, wrapping in a massaging chair pad can ease it in time, but usually it’s full body and the only solution is to keep moving until it settles, often taking hours!

Akathisia is a little-studied, sporadic symptom in about 26% of PWP, and is only one symptom of Parkinson’s that is visible, although it leads to very visible attempts to get relief. Some of the other non-motor function symptoms PWP often face are constipation, bladder incontinence, difficulty swallowing, gum and dental deterioration, excessive sweating, intolerance to heat and cold, daytime sleepiness, pain, vision issues, loss of taste and smell, memory loss, difficulty with word recall, and apathy. Parkinson’s Disease does not stop with making slow, stooped, stiff, shaky people…it’s so much more!

Betty Bland

a.k.a. “dropsies”


Patients as Partners: The WHYSTOP Scale questionnaire results

Posted April 4th, 2014 by

We’re really excited to launch a new series here on the blog called Patients as Partners. The series will highlight the results and feedback that PatientsLikeMe members give on questionnaires from our Open Research Exchange (ORE) platform.

What’s ORE all about again? PatientsLikeMe’s ORE platform gives patients the chance to not only check an answer box, but also share their feedback on each question in a researcher’s health measure. They can tell our research partners what makes sense, what doesn’t, and how relevant the overall tool is to their condition. It’s all about collaborating with patients as partners to create the most effective tools for measuring disease.

So to kick the series off, we have results from the WHYSTOP Scale, which measures how diabetes can impact appetite and how people decide when they’re done with a meal. Back in September, we launched this as one of the first-ever questionnaires on ORE with our research partner William Polonsky, Ph.D., CDE, from the Behavioral Diabetes Institute and University of California, San Diego. More than 700 type 2 diabetes community members added their voices, and all of the answers and feedback shaped and influenced the health measure to make it the best possible. (Shout out and thank you to all those that participated!) Check out the WHYSTOP survey results and keep an eye out for more ORE questionnaire results coming up as we continue our Patients as Partners series.

 

 

 


Are you at risk? American Diabetes Association Alert Day

Posted March 25th, 2014 by

 

According to the American Diabetes Association (ADA), over 25 million people are living with type 2 diabetes in the United States, and 7 million aren’t even aware they have the condition. What’s more, 79 million people have prediabetes, a condition that can include several symptoms of diabetes.1

Do you know if you’re at risk for type 2 diabetes? Today is American Diabetes Association Alert Day, and it’s all about learning and recognizing risk factors. Take the ADA’s online diabetes risk test to learn if you’re at high risk – it’s fast, free and easy. The ADA’s official fact sheet is also full of useful information about diabetes and today’s activities, including Step Out walks and Alert Day Center education events. Visit the ADA’s website to find an event in your area.

Living with type 2 diabetes can involve many lifestyle changes, so if you’ve been diagnosed, are living with prediabetes or are at high risk, visit the PatientsLikeMe type 2 diabetes community to check in with your fellow patients and learn how they manage their condition. You can post questions in the forum and get answers from others living with diabetes, check treatment reports to see what people are taking to manage it, and track your own symptoms to get a better understanding of your own health.


1http://main.diabetes.org/dorg/alert-day/alert-day-2014-fact-sheet.pdf

 


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.


As 2013 winds down… Part I

Posted December 27th, 2013 by

We wanted to take a quick look back and share how the PatientsLikeMe community has continued to change healthcare for good over the last year. Thousands of members added their voices to real-time research, all while providing support to one another and sharing about their personal health experiences. It really is a group effort, so a big shout out and thank you to everyone in the community.

Here are some highlights from 365 days of donating data, sharing experiences and learning more, together…

What were some of the hottest topics in the forums?

Who shared their story on the PatientsLikeMe blog?

More than 8,000 members donated their data to a PatientsLikeMe survey, including…

And close to 5,000 added their voices to our first ever Open Research Exchange questionnaires this year, including…

  • The Treatment Burden Questionnaire
  • The WHY STOP questionnaire on type 2 diabetes
  • A questionnaire on hypertension
  • The Perceived Medical Condition Self-Management Scale

As we move into 2014, we’re more confident than ever that the patient experience – your experience – will not only help everyone learn more about their conditions right now, but continue to change healthcare for good.