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Find inspirational stories, tips from the COPD Coach, events, and current news on the COPD community blog. Have a question regarding COPD that you would like to share with our community? Contact our COPD Coach. Coaches Corner is aimed at providing information for individuals with COPD to take to your doctor, and is not in any way intended to be medical advice. If you would like to submit a question to the Coaches Corner email us at coachescorner@copdfoundation.org. We would love to hear your questions and comments.

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Archive: March 2016

Memories of Mom's Kitchen

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When Jennifer Cowgill’s mother passed away from COPD, she wanted to do something special in her mother's honor. Because a lot of her favorite memories with her mother were in the kitchen, she decided to create a cookbook.

Jennifer Cowgill I was 8 months pregnant with her first and only granddaughter when my mother, Marla Loftis, passed away from COPD. We had the closest relationship; she meant the world to me. We did and talked about everything together, nothing was off limits. A lot of my favorite memories with my mom were watching her in the kitchen. We always had some of our best talks there.

The decision to make this cookbook was simply because Mom loved to cook and bake for the family. She was a natural at cooking, going off of memory and without actual recipes to follow.

The recipes she did have I put in this cookbook, and are a dedication to her and her love for cooking. I want to preserve our memories not only for myself, but for the granddaughter she never got to meet. This is a way to pay tribute to my mom that will last forever. My hope and devotion is that love is continually shared through this cookbook.

COPDF: Did you know what COPD was before your mother was diagnosed?
Jennifer: I was a very young child when my mother was diagnosed, so her having COPD was all I ever knew.

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Tags: Living with COPD
Categories: Personal Stories

Medicare Answers Now Readily Available to the COPD Community

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This blog post was written by Joe Baker, President, Medicare Rights Center.

Understanding everything about Medicare, from when you should enroll to what Medicare covers – and doesn’t, to what you will pay and how to lower your costs, just became a whole lot easier for people with COPD and their families, caregivers, and health professionals.

Thanks to a new partnership between the COPD Foundation and the Medicare Rights Center, the largest and most reliable independent source of Medicare information and assistance in the United States, a link to the new Medicare Interactive is now available on the COPD Foundation’s website.

Medicare Rights Initiative Medicare Interactive is a free online resource packed with hundreds of answers to Medicare questions to help you navigate the complexities of Medicare coverage. The site’s new design and features ensure that its users can quickly find the Medicare answers they need through smart links to relevant Medicare Interactive pages and case examples, a roll-over glossary, and other helpful resources.

You can create a free Medicare Interactive profile to bookmark your favorite pages, manage Medicare Right’s newsletter subscriptions, access free exclusive links/downloads, and receive notices about key Medicare dates. As an initial thank you for registering, you will receive a welcome e-packet from the Medicare Rights Center, complete with the exclusive New to Medicare Guide.

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Tags: COPD Medicare rights
Categories: Advocacy

PELICAN: The Peer-Led Oxygen Infoline for Patients

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About 1 million people with severe lung disease, most commonly COPD, are treated with oxygen in the U.S. Appropriate oxygen use can save lives and increase quality of life, yet adherence to therapy is poor. In focus groups conducted by the COPD Foundation, patients with COPD and their caregivers emphasized the need for reliable information and coaching on oxygen, such as availability and appropriate use of oxygen delivery systems and social aspects of oxygen use. They expressed a strong interest in getting help and education.

PELICAN Oxygen Study In April 2015, researchers from the University of Illinois at Chicago, National Jewish Health, and LA-BioMed developed a broad-based collaboration with the COPD Foundation, AlphaNet, patients, caregivers, a national oxygen supplier, and others to conduct the PELICAN: The Peer-Led Oxygen Infoline for Patients and Caregivers. The study was designed for adults with COPD who have a prescription for oxygen 24hrs/day, 7 days/week, with the goal of improving the health and wellbeing of people with COPD and their caregivers.

Participants will receive patient-friendly educational material, developed by the COPD Foundation, and receive phone calls over a three-month period.

Interested? From your home, call toll-free a PELICAN study staff member at: (844) 627-5587 Hours: 7:30 AM - 6:30 PM (Central time, Monday to Friday).

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Tags: infoline information oxygen study support
Categories: All About Oxygen

Pulmonary Rehabilitation Week

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March 13-19, 2016 marks Pulmonary Rehabilitation Week! Individuals with COPD who participate in pulmonary rehabilitation are actively working to improve their lives through exercise and education to better manage their breathing with COPD.

Pulmonary Rehabilitation Pulmonary rehabilitation (pulmonary rehab) does not increase lung function, not even a little bit. When lungs are damaged, they’re damaged for good. That’s what makes pulmonary rehab such a challenge compared to cardiac rehab, in which case you can repair and strengthen the heart. Pulmonary rehab, however, is crucial to effective management of COPD. A team of specialists work with the patient to improve overall physical ability, health management, and emotional well-being. Individuals who participate in pulmonary rehab report an improved quality of life, ability to exercise, and mood.

Your regimen can consist of exercising, nutrition counseling, and education about your disease. Instead of just dealing with one physician, you may be working with a team of professionals in the different areas that make part of your rehab program, such as doctors, nurses, respiratory therapists, dietitians, and exercise specialists. Education about your disease is an important step in improving your health, and this may be part of your rehab program. You may learn about your symptoms, available treatments, and techniques to manage your symptoms including what to do during an exacerbation.

To join a program, your doctor must refer you to pulmonary rehabilitation and have spirometry test results that indicate you have COPD. Once admitted, your rehabilitation team will take a complete health history, talk with you about your current level of activity, and help you set goals with you. You will walk as they monitor your heart rate, blood pressure and oxygen level. It is OK if you cannot walk very far. Pulmonary rehabilitation professionals are experts at working with people with severe shortness of breath, and they’ll make sure you’re safe.

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Tags: COPD lung function pulmonary rehabilitation week respiratory therapy
Categories: Tips for Healthy Living

The COPD Town Hall and the First-Ever National COPD Action Plan

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The National Heart, Lung, and Blood Institute (NHLBI) hosted the first-ever COPD Town Hall meeting at the National Institutes of Health on February 29-March 1, 2016. The meeting was a critical first step in the development of a National COPD Action Plan to tackle the COPD epidemic in the United States.

The COPD Foundation worked with NHLBI to bring together patients, caregivers, government representatives, medical professionals, and others to address the disparities in government funding of prevention, treatment, and research around COPD.On day one, attendees were assigned to working groups that developed objectives and tactics around one of six goals. The multi-disciplinary teams presented the results of their brainstorming sessions to the broader group on day two. The discussions were broadcasted in real-time to online viewers who contributed to the conversation from their homes.

National COPD Action Plan The following common themes arose day two of the COPD Town Hall presentations:

  • Real progress is going to take an army of individuals and groups working together;
  • Attitude change and increased engagement among the public, providers, patients, caregivers and policy makers is requirement of change;
  • Growing referrals and access to pulmonary rehabilitation is a short term win that can make a big difference;
  • Innovative ways of collecting and using data will drive progress;
  • Increased funding for research must include a greater focus on prevention, public health and translational research as well as growing what we know about how COPD progresses in each individual;
  • Growing the COPD360 patient registry is central to advancing research towards improved therapies, and ultimately, a cure for COPD.

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Tags: COPD COPDTownHall National COPD Action Plan NHLBI NIH
Categories: Advocacy

The Truth about Stem Cell Therapy

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Dear COPD Coach,
Is there any scientific study to indicate that stem cell therapy can have a positive outcome in the treatment of COPD? I have COPD and this procedure has been suggested to me as a possible treatment.

-Curious about stem cell

Dear Curious,
The is absolutely no proof that these “stem cell” treatments work - or more importantly - are safe. The individuals who run the clinics claim they are conducting clinical trials, however, clinical trials don’t charge and these “trials” are not approved by the government.

Insurance does not cover the treatment, and it is VERY expensive. The administrators initially charge you a price of a couple thousand, and when you don’t show improvement (which you won’t), they tell you that you need more treatments at several thousand dollars each.

Then there is a question of safety. Most of these clinics claim they remove stem cells from one part of your body and then transplant it. I studied one of these clinics where the operators were advertising that they would help other clinics up by selling them a book with all the info they needed to perform procedures! No reputable university, research facility, medical organization or doctor endorses or recommends this therapy, and the FDA is investigating these clinics.

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Tags: COPD stem cell therapy treatment
Categories: Coaches Corner

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