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Advocacy: You Can Be the Voice of Change

Posted on March 29, 2021   |   

This article was written by Bill Clark and Ruth Tal-Singer, PhD.


For many years, COPD has been often overlooked, under researched and underfunded. It was seen as a disease of “shame and blame; that we did this to ourselves. In recent years that that has begun to change!. You might ask: what caused the change? The answer is the patient voice, and patient advocacy is no longer silent and is now being heard and is becoming the voice of change.

Sure there are facts and figures justifying why COPD deserves more attention, but what is opening doors is the voice of the patient and their stories. Your story is so valuable because it puts a face to the impact COPD causes not only to you, but your family and friends. Who can tell our stories better than ourselves? Your story speaks to the need for better treatments, new technology, and targeted research. It tells all who hear it that what you face on a daily basis could well be them or a family member. It speaks to how urgent the problem is and why it can no longer be ignored. Your story is your own and something only you can share. Your story, when joined with others sharing their stories can and does make an overwhelming difference and change!

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Categories: Advocacy

Eating Well: From Debbie B’s Kitchen to Yours

Posted on March 11, 2021   |   

This article was written by Stephanie Williams, BS, RRT.


Debbie B. - Connecticut State Captain This week our focus has been on nutrition. For some people living with COPD, it can be challenging to eat right and get the calories and nutrients you need, either because you don’t feel confident in your cooking skills or maybe because you don’t have much energy to cook.

If you have been on COPD360social for a while, you have probably seen posts from DebbieB.-Connecticut State Captain where she posts pictures of her yummy meals. She usually posts a food that can be made ahead of time and eaten for several meals to come. What a great idea! Cook once and have plenty for a few days – it sounds good to me!

A few months ago, I asked Debbie B. if she would help me by sharing some of her recipes with us. She was happy to help, and she sent over dozens of recipes. I am sharing a few of them here, and hope that maybe you will have some to add in the comments section.

Before we get started, here are a few notes from Debbie B.:

"We all want to eat healthy, satisfying meals. Sometimes we have to substitute canned or frozen foods for fresh. It is ok to substitute other proteins in place of meat. When reading recipes, it is important to realize that you can substitute ingredients if there are things you cannot eat or don’t like. Think of the recipe as a basic guideline. You can make adjustments to suit your needs.

On days that you feel good, you might cook a one-time meal, or you might take that opportunity to make a little extra or a large meal and plan other meals using the leftovers. You might even freeze portions to eat at a later date.

Enjoy preparing your meals as much as you enjoy eating them!"

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Categories: Education, Resources and Studies Tips for Healthy Living

Do Eating Habits Impact COPD?

Posted on March 09, 2021   |   

Dear Coach,

My wife has had COPD now for several years. In the past few months, she seems to get ill after eating with a lot of gas causing her to belch a lot. She also seems to have problems breathing afterwards, too. What would you suggest we do?

Dear Concerned Caregiver,

The problem you describe could be from a health problem other than COPD so she should talk to her doctor know about these new problems to make sure she can get any testing or treatment she needs. In people living with COPD, it is always smart to think about diet and food.

Having COPD presents many challenges and eating can be one of them. Nutrition is very important for everyone but with COPD it is not only important but often critical that we not just consume food, but in the process get the needed protein, fiber, fats, and carbohydrates. Something to keep in mind is that the simple act of breathing requires calories. But people living with severe COPD use many more (often hundreds more) calories to breathe than someone without COPD. If these calories are not replaced it can result in weight loss, fatigue and even more shortness of breath.

Instead of eating large meals a couple times a day your wife should try eating several smaller meals throughout the day. These smaller meals should be high calorie and protein such as cheese, peanut butter, protein shakes and meats. In my case, I find it easy to eat peanut butter crackers and sandwiches, small meat and cheese slices, and a high calorie nutritional shake. When I eat the smaller meals, I feel far less bloated and breathless.

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Categories: COPD360coach Tips for Healthy Living

The heart and soul of the COPD Foundation, COPD360social, reaches 50,000 members

Posted on March 08, 2021   |   

This article was written by Susan Williams, Senior Director of Communications, Bill Clark, Vice President of Patient Experience and COPD360social Community Manager, and Vincent Malanga, Chief Information Officer


On March 4, 2021, the COPD360social community, a peer-to-peer online platform, reached a milestone: 50,000 members. COPD360social is an integral part of the COPD Foundation’s revolutionary COPD360 technology platform that provides visitors with a "one-stop shop" experience in everything COPD including educational materials, blogs, research, and a large searchable database for questions relating to COPD.

John W. Walsh, founder of the COPD Foundation believed that patient voice and documenting patient experiences was vital to bringing awareness to a disease that has often been overlooked, underfunded and misunderstood. It was for these reasons COPD360social was born. Chief Information Officer Vincent Malanga was tasked with the development of a platform where patients, caregivers and medical professionals could interact freely and safely to share honest and factual information, thoughts and insights, even photos.

A team of staff members and patients was enlisted to design community guidelines and structure so that the new community would work seamlessly with the COPD Foundation website. What was not anticipated at the time was that we were giving birth to what evolved as a large vibrant growing community with membership from over 151 countries; a place where members share all aspects of their daily life, gain new friendships; where people living with COPD can connect with and support each other in the knowledge that they are never alone. COPD360social has become a model that other patient communities all over the world aspire to be.

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Categories: Community Announcements COPD Foundation Initiatives and Activities Related COPD News

Did you Know? – Exercise Videos

Posted on March 01, 2021   |   

This post was written by Jane Martin, BA, CRT


The COPD Foundation website and Pocket Consultant Guide app have exercise videos you can use at home.

Spring is coming and pretty soon we’ll be able to open the windows and feel the warmth, sunshine, and energy of a new season. You might be thinking, "Energy? Really? I have enough trouble getting to the bathroom, let alone 'feel energy!'"

For sure, it’s been a long, hard winter. But that’s all the more reason to do your best to get up and move. And we can help you do that. The COPD Foundation has seven great exercise videos you can get to easily, any time you want. They all have good, solid, practical information, and they will help you get you moving – safely and effectively. For those of you who already exercise regularly, these videos may help add variety to your routine and work some new muscles.

These videos are led by respiratory, physical, and occupational therapists who are especially trained in helping people with COPD and other chronic lung diseases. They can help you on your way to breathing better while increasing your endurance, flexibility, and balance. And they are filled with exercise tips along the way. I’m here to tell you… this is not about wearing skimpy exercise clothes, sweating, and pushing yourself to the max. This is about starting where you are and learning how to breathe easier with movement and exercise so you can stay active, healthy, and independent.

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Categories: Education, Resources and Studies

New Plain Language Summary Feature in Chronic Obstructive Diseases: Journal of the COPD Foundation

Posted on February 03, 2021   |   

This article was written by Cathy Gray Carlomagno, BS, Managing Editor Journal of the COPD Foundation


Chronic Obstructive Pulmonary Diseases: Journal of the COPD Foundation is happy to announce a new feature: "plain language summaries" of the journal’s recently published articles.

The summaries are short and written in simple, non-technical language with the goal of providing a helpful overview of the published "original research" or "review" article. These summaries strive to answer the questions:

  • What occurred during the research/study/trial?
  • What was learned at the end of the research/study/trial?
  • Why was the research needed?
  • How will information learned from the research be used in the future?

Several of the articles recently published in Volume 8, Issue 1 of Chronic Obstructive Pulmonary Diseases: Journal of the COPD Foundation have corresponding plain language summaries. These articles (and their short summaries) cover a variety of COPD-related research topics including patient registries, large clinical trial results, genetics, exacerbations, exercise, patient treatment preferences and more.

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Categories: Journal of the COPD Foundation

Living with Bronchiectasis: The Patient Perspective

Posted on January 27, 2021   |   

This article was written by Bret Denning, JD and Christina Hunt, BS, RRT-NPS


Brian Simpson is a registered respiratory therapist (RRT) who has lived with severe chronic asthma for more than 30 years. He has worked in pulmonary rehabilitation and as a COPD Navigator and case manager. When his bronchiectasis led to a rapid deterioration in lung function, Brian could no longer work with patients. He began working as a CDI (clinical documentation improvement specialist), reviewing inpatient accounts. Even with severe lung disease, Brian has completed 18 full marathons, more than 30 half marathons, and a 50K mountain trail race.

Thanks for talking with us today Brian. Can you tell us when you first started noticing signs of your bronchiectasis?

I first started noticing symptoms of bronchiectasis a little over four years ago. I had a rapid and severe decrease in lung function after finishing two marathons within a two-week period. Prior to that, I was running at least five to eight miles every day. My lung function dropped from just under 30% to 15% and I noticed muscle fatigue with any activity. Even coughing was a struggle.

What tests did the doctors do to confirm your diagnosis?

My physician ordered a CT scan of my chest and pulmonary function tests as part of a pre-lung transplant assessment. When my pulmonologist reviewed the results with the radiologist, they made the diagnosis of bronchiectasis.

I’m sure it was quite a shock to hear that. How did you initially react to the diagnosis?

I remember feeling somewhat overwhelmed being diagnosed with bronchiectasis. I’m a non-smoker who has suffered from severe chronic asthma my entire life. Over time, that developed into stage 4 COPD, and now I was adding bronchiectasis to the list of diagnoses.

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Categories: Personal Stories Tips for Healthy Living

A Coronavirus Update for the COPD Community

Posted on January 14, 2021   |   

This article was reviewed by a member of the COPD Foundation Medical and Scientific Advisory Committee (MASAC)


Updates from January 14, 2021

COVID-19 Vaccines: What do we know?

COVID-19 Vaccines: What do we know?

January 14, 2021

Do you have questions about the COVID-19 vaccines? Do you wonder how they work or if they are safe? Watch this webinar and hear our expert panel discuss these questions and others from the community. We hope this discussion will help you feel more prepared to make the best decisions for you and your health. Speakers include: Dr. Barbara Yawn, Dr. Bob Wise, and Dr. Paul Sax.

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Categories: Coronavirus (COVID-19) Education, Resources and Studies

Medicare Insights Survey Results

Posted on December 14, 2020   |   

The article was written by Jamie Sullivan, MPH, Danielle Boyce MPH, Kristen Willard, MS, Ruth Tal-Singer, PhD


The type of insurance you have can play a big role in what care you have access to and how much your care and medications cost. Since there are so many different types of insurance plans and because everyone has different considerations that are important to them, how people make choices, what types of things they think are important, and what resources they use to help them decide about insurance will be different for each person. We conducted the Medicare Insights Survey on COPD360social in October 2020 to find out answers to these questions and help us plan educational programs for 2021.

We heard from 192 people with chronic lung diseases who are currently covered by Medicare, Medicaid, private plans, and others. Here is the breakdown of the types of insurance that survey respondents have. Keep in mind that one person could select multiple options.

What matters in making insurance decisions?

Survey respondents were asked to select all the factors they think are important when they are choosing insurance plans and then to select the one most important factor.

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Categories: Education, Resources and Studies

Bronchiectasis: Everyday Health with Exercise, Nutrition, and Sleep

Posted on December 09, 2020   |   

This post was written by Jane Martin, BA, CRT


In this blog post we talk more about living with bronchiectasis and taking care with three different aspects of your health (and that everybody should keep in mind): exercise, nutrition, and sleep.

This is the fifth in a series of six blog posts to bring more awareness to bronchiectasis and things you can do. Follow these links to read more:

Disclaimer: Always check with your health care provider before making any changes in exercise, activity, or diet.

Exercise

Exercise training is linked to improvement in exercise ability, shortness of breath, and less fatigue (tiredness) for people with bronchiectasis. It is also shown to be effective in decreasing exacerbations (flare-ups)1. You might be thinking, "Well, that’s fine, but I can’t exercise. I get short of breath just walking to my car!"

If you feel that way, you’re not alone! You should know, though, that exercise is possible. A pulmonary rehabilitation program can help you learn to exercise safely with the guidance of a special team of health care professionals. Some are now offering remote classes. Ask your doctor about referring you to pulmonary rehab.

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Categories: Tips for Healthy Living

Treating Severe Emphysema: One Family’s Journey with Bronchoscopic Lung Volume Reduction (BLVR)

Posted on October 29, 2020   |   

This article was reviewed by Kristen Willard, MS


This post is based upon the real-life experiences of Chris, a person with COPD.

Chris and Jody


Emphysema – one of the forms of Chronic Obstructive Pulmonary Disease (COPD) – is a disease that affects the person with COPD as well as their family and caregivers who watch them deal with the frustration and fear of having difficulty breathing. Before emphysema affected Chris’s lifestyle, he enjoyed everything about the outdoors. He spent hours working in his garden and went hunting with friends. He absolutely loved fishing with his two grandsons, which involved a long walk through the woods to get to the river. As Chris’s symptoms progressed, he no longer found that long walk easy to do. He also had to pick and choose what he could do, as everyday activities became difficult for him to finish. Chris would have to form a plan to do just about anything, so that if he was out of breath, he knew there was somewhere for him to sit down and take a rest. He found this to be disruptive and embarrassing.

His wife, Jody, watched him struggle for years, which fueled her search for treatments that could help them get back some normalcy in their lives. She also felt a divide between their family and the rest of the world. Jody was devastated knowing that Chris felt that his problems became his family’s problems too. Chris was very good about using all his therapies and keeping up with the activities he learned at pulmonary rehabilitation. They wondered if there was more that could be done.

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Categories: Medications, Treatments and Therapies

MEDICARE OPEN ENROLLMENT-What COPD Patients Need to Know

Posted on October 27, 2020   |   

This article was written by Jamie Sullivan, MPH and reviewed by David Mannino, MD, Ruth Tal-Singer, PhD, Byron Thomashow, MD, Stephanie Williams, BS, RRT, and Barbara Yawn, MD


Not much about the fall of 2020 feels routine but some things go on as usual and that means the open Medicare enrollment season. You may be reading this and say "I am not on Medicare" or "I’m happy enough with my coverage," and be tempted to click on to the next article, but if you have health insurance, regardless of the type or how happy you are with your current coverage, open enrollment review of your insurance plan should still be on your to-do list!

Why should you care about open enrollment? Many details about a given insurance plan can change from year to year, so just because you are happy now, you need to review your coverages in the assigned “open enrollment” time (for Medicare that is October 15, 2020 - December 7, 2020) to make sure that the doctors in your network, the out-of-pocket costs of care and the medications covered haven’t changed for the coming year.

Most of the issues we are going to cover in this blog are about Medicare. If you have a private plan from your employer or are enrolled in a Medicaid Managed Care Organization plan make sure to check the dates of your open enrollment. If you purchased insurance from a state or federal exchange (sometimes called Obamacare Plans), or if you need to purchase insurance for next year, your open enrollment period is from November 1, 2020 - December 15, 2020.

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Categories: Community Announcements Health Policy and COPD

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