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MediKidz: Educating Children about COPD

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Receiving a diagnosis of a chronic disease can be a scary and confusing time; and the impact on family members and children is often overlooked. While the prevalence of COPD is seen in an older generation, educating of loved ones is key factor to promote understanding and support. This is why the COPD Foundation is proud to have partnered with Novartis and Medikidz to develop a comic book that provides a creative and innovative way to help those with COPD explain their condition to friends and family, specifically children and adolescents.

MediKidz Comic for COPD Medikidz is a children’s medical education organization that works closely with healthcare professionals, families, children, and patients to produce unique learning materials in an interactive, powerfully-visual comic book format, thereby helping to educate children about their health as well as the health of those around them. The comic follows the story of Andrew and Hannah, who are guided by the Medikidz ‘superhero’ team to help them understand COPD and ways in which they can help their Grandma.

“When organizations educate the public about COPD, oftentimes we overlook the impact the disease has on entire families and communities. COPD not only affects those who are diagnosed, but their family members and loves ones as well, including children,” explains Fabiana Talbot, director of communications at the COPD Foundation.

“The MediKidz comic can therefore have two tiers of effectiveness; not only as a preventative measure, by showing children the repercussions of smoking, but also from an awareness standpoint. We hope this graphic novel will inspire younger generations to become future advocates by working to remove the stigma surrounding COPD.”

 You can find the MediKidz comic online, here.

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Tags: comic Education MediKidz
Categories: Current Issue Volume 12 - Number 3

Harmonicas 4 Health: Duff Maynard's Story

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The COPD Foundation’s Pulmonary Education Program (PEP) is proud to offer Harmonicas 4 Health (H4H), the first nationwide harmonica program created especially for individuals with COPD and other chronic lung diseases. This program was developed and launched due to the generous support of ACM Lifting Lives, the charitable arm of the Academy of Country Music.

Duff Maynard, 66 years old, can attest to the benefits of H4H. Originally from New York, Duff moved to Tennessee, a state with the highest rates of COPD in the country, 11 years ago. He is a former smoker and also lives with asbestosis. Duff first learned he had COPD about 10 years ago and has been using a variety of medications ever since. He has been through pulmonary rehab for a year and a half ago and is an active member of the Better Breathers Club in Murfreesboro, TN.

Harmonicas for Health Duff’s life after his diagnosis didn’t change much initially, until 3 years ago when he experienced his first exacerbation. Then everything changed.

“I couldn’t golf of anymore,” he explained, “... could barely walk in the stores. Most of my regular activities (mowing the lawn, working in the yard, painting, working on my car) ceased. I just didn’t have the breath to do them.”

Then in early 2016, during one of the Better Breathing Club meetings, H4H was presented by Stephanie Williams of the COPD Foundation who asked for volunteers for the pilot program. Duff immediately joined as did many in his club. “I’ve never played the harmonica before. I always wanted to play a musical instrument and this was a chance to do it. My wife joined also which is great because we get to practice together and support one another,” he said.

Duff has seen the positive impact of the H4H program ever since. He knows the story will continue, but shared several impressive milestones that he has reached since joining H4H.

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Tags: COPD Harmonicas for Health lung health
Categories: Current Issue Volume 12 - Number 3

The Patient Access to Durable Medical Equipment Act (PADME) and You

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Since its passage in 2008, the COPD Foundation has been committed to monitoring the implementation of Competitive Bidding throughout the country. We believe it is a failed piece of legislation that harms patients. Since its rollout, oxygen access has become less certain for many patients. The COPD Foundation’s policy team has been working diligently with the Centers for Medicare and Medicaid (CMS), along with DME partners and concerned community members to limit the effects of this detrimental policy.

The PADME Act and You The Competitive Bidding program means companies that provide your oxygen equipment will have to submit bids to Medicare reflecting the lowest price they can provide for the supplies. Medicare will then choose approved companies (called contract suppliers) and set the price based on the bids that were submitted. The supplies impacted by Competitive Bidding, called durable medical equipment (DME), include oxygen concentrators, walkers, wheel chairs, prosthetic limbs, hospital beds, and mail order diabetes products, among many others. The intention of the bill was to increase competition among DME suppliers and save the government and taxpayers money. However since implementation, there has been an alarming reduction in liquid oxygen access, a more portable and lighter option preferred by many patients which enables them to continue their every day activities. Additionally, we have seen nationwide cuts to service and delivery options.

Our most recent efforts are around lobbying for the passage of S.2736 and H.R. 5210, the Patient Access to Durable Medical Equipment Act (PADME). The PADME Act’s main purpose is to delay the next phase of reimbursement cuts for rural areas by 15 months (October 1, 2017). In addition, it addressed a number of technical issues related to competitive bidding and required a monthly report by CMS to monitor the impact of the cuts on Medicare beneficiary access-access that is critical to millions of COPD patients across the nation.

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Tags: COPD durable medical equipment PADME patient access
Categories: Current Issue Volume 12 - Number 3

Clinical Guidelines to Help Diagnose and Treat "Genetic COPD"

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The Journal of the COPD Foundation has published new clinical guidelines designed to assist healthcare providers in properly diagnosing and treating Alpha-1 Antitrypsin Deficiency (Alpha-1) in adults.

Alpha-1 is the most common known genetic risk factor for emphysema, and is often referred to as “genetic COPD.” Experts estimate that less than 10% of people with Alpha-1 have been properly diagnosed. The guidelines recommend that everyone with COPD should be tested for Alpha-1, regardless of age or ethnicity; that anyone with unexplained chronic liver disease should be tested for Alpha-1; and that parents, siblings and children as well as extended family members of Alphas or others with an abnormal alpha-1 gene should receive genetic counseling and be offered testing for Alpha-1.

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Tags: alpha-1
Categories: Current Issue Volume 12 - Number 3

Attending Conferences: A Patient's Perspective

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Jean Rommes, COPD State Captain and Advocate

As a member of the ATS Public Advisory Roundtable (ATS PAR), I was invited to attend the ATS annual conference in San Francisco. I represented EFFORTS (Emphysema Foundation For Our Right To Survive), an on-line advocacy and support group for people with COPD on PAR. EFFORTS has been sending people to the ATS conference for many years, so I have been attending for nearly 10 years- this year with some additional responsibilities.

As an ATS PAR member, I had responsibilities to attend and help with the PAR events, especially the Patient Day which is always held, the day the conference officially opens. The day began with the PAR business meeting and continued as PAR members welcomed patients, made sure they got to the right rooms and knew where the oxygen refill stations were located. The day included lunch for everyone and time to sit at tables with experts in the field. It was a long day and required a lot of moving from place to place, something that is made more difficult when you’re juggling your O2 tank, your laptop and your conference materials.

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Tags: advocacy mobility
Categories: Current Issue Volume 12 - Number 3

Elwood the Dog: An Unlikely Caregiver

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Bill Clark, Senior Director of Community Outreach

Today, I write a different kind of memorial tribute. It is not for someone who had COPD, but instead for a pioneering caregiver. What makes this different is that this particular caregiver only weighed around 30 pounds and traveled our world on four legs. You might have guessed, Elwood was a dog, but just not any dog. Elwood, like his master, was a true inspiration in the early days of COPD awareness; who brought COPD awareness and his amazing master national attention while bringing hope, joy and love to patients all across the country.

This morning I received the following message: “With heavy hearts we said goodbye to our faithful friend, Elwood Borger last night. He has helped our family forage through some of the hardest times in our lives. Farewell to a dog who had no equal.”

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Tags: caregiving
Categories: Current Issue Volume 12 - Number 3

Working Simpler to Save Energy

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For those with COPD, living with lung impairment can make even simple tasks seem overwhelming. While some more elaborate tasks may seem out of reach, we can still be productive and save precious energy by simplifying how we do things.

For example, if your task is as simple as bathing, you can simplify by purchasing a large handled bath brush so you don’t have to reach, using a terry cloth robe to dry yourself, or maybe even have a shower or bath chair so you can sit while bathing. When cooking, it doesn’t take any extra time to make larger portions so you can freeze leftovers for times when you don’t feel optimal.

Whether the task is big or small, the steps are the same:

  • Assess the task. Figure out what you want to accomplish. Decide if all or part of the task is physically possible or if you will need assistance, and if the assistance is available.
  • Plan it all out: Make a list of each step involved, what materials you will require, what you feel you can still do yourself and each step that might require assistance from others. Establish how each step will be accomplished. It is important to be realistic as to what you are capable of doing at a given time.
  • Schedule when you want to begin and end. Remember, it is not always advisable to tie yourself to a strict time table, and that you may need to adjust the schedule based on how your capabilities at a particular time or the schedules of those who might need to assist you. If possible try to put simpler steps first and then gradually build as your stamina increases.
  • Assemble beforehand all materials and tools you plan to use to have at hand. Let’s look at some real life examples how people were able to achieve both little and big accomplishments despite their lung impairment.

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Tags: Living with COPD
Categories: Current Issue Volume 12 - Number 3

Patient Involvement in the Future of COPD

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John Linnell, COPD State Advocacy Captain

Many of us, as individuals with COPD, wonder what the future holds; not for only ourselves, but more so for the future of COPD. Is the cure right around the corner? Is what I hear about stem cell therapy true? Is a new drug being tested? Is Congress doing anything to help us? Can I do something more? Can I get involved?

YES, you most certainly can, and in ways that could be as easy as sitting at your computer just as you are now!! The fact that you have taken the time to read this means you are already involved in learning more about COPD. Now is the perfect time to become involved in DOING.

John Linnell The easiest way to start, and a very important one, is to join the COPD PPRN, the COPD Patient-Powered Research Network. This is already well underway, but needs more patients to enroll. Joining is easy and can be done from your computer. You are not committing to anything. You are just filling out a simple survey with some health information that is kept encrypted and secure. If you qualify for a future study, you can decide at that time if it is something you would be interested in helping with. Learn more here.

Another avenue is to explore existing clinical trials. Even if you are not interested in participating in a trial, you can see what research is actually being done today! While there are not nearly as many clinical trials for COPD as there are for other major diseases, there is much being done. If you are looking for trials in your geographical area, simply use the 'Advanced Search' feature. Some trials will pay you for your time. Learn more here.

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Tags: advocacy COPD patient involvement research
Categories: Volume 12 - Number 2

Climbing K2 for COPD

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At the time of publication, Chase Hinckley is embarking on a climb of K2, the second highest mountain in the world, as an act of solidarity with the COPD community this summer. Chase, 34, lives in Colorado and has a penchant for adventure. In 2015, he left behind the security of his engineering job to travel the world and climb it’s biggest mountains. To date, Chase has climbed mountains such as Denali, Rainier, and Kilimanjaro.

Chase Hinckley Climbing for COPD K2 – known as the “savage mountain” – is located on the China-Pakistan border and has an elevation of 28,251 feet. It is a notoriously difficult climb with extreme altitudes, lack of oxygen, and extreme storms. To date, only 306 people have stood on K2’s summit, compared to the more than 5,600 people who have reached the top of Mt. Everest.

Chase recognizes that climbing K2 will be a challenge, and he equates this struggle with the daily life of a COPD patient.

Chase is talking about COPD because for him, it’s personal.

“The women in my family have been plagued with the burden that is COPD. My aunt has only 40% lung function remaining. It leaves me awestruck how quietly she battles this illness. The struggle can be isolating and I want everyone to know that they don’t have to hide symptoms or compound the experience with guilt.” Climbing K2 for COPD Awareness

He continued, “I am fortunate to have the opportunity to travel without a nebulizer and the freedom to push my own limits with regards to altitude. I believe that those with and those without COPD can work together to realize our full potential.”

As a mountaineer, Chase understands how it feels to struggle for air, which gives him a unique perspective as someone who is not a COPD patient. Chase decided to make his climb an opportunity to fundraise for COPD. He even created a webpage where you can follow his progress: http://copdf.co/K2Climb.

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Tags: awareness climbing K2 COPD
Categories: Volume 12 - Number 2

Understanding Palliative Care

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Helen Sorenson, MA, RRT, FAARC

Palliative care, hospice, end-of-life care… these are all the same thing, right? Simply put, no, they’re not. The fact is that most patients and healthcare professionals really do not understand palliative care.

Palliative Care in COPD Not long ago, a fourth-year medical student did some research then wrote an article titled; What’s in a name? Is palliative care too loaded? Stop and think for a minute (before you read any further)…what do you think palliative care is? If you answered end-of-life care, please read on…because it is a lot more than that. Palliative care is “physical, social, psychological and spiritual support given to patients with a life-limiting illness.” So, what’s a life-limiting illness? Let’s see… cancer, heart disease, COPD, pulmonary fibrosis, pulmonary hypertension, diabetes, pneumonia, liver disease, kidney disease…Is each of these diagnoses a “life-limiting” illness? Yes, no doubt about it. But do all these diagnoses require end-of-life care? No, not necessarily. However, all these diseases/conditions are certainly more manageable when patients are provided palliative care, because palliative care is bothersome symptom control.

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Tags: caregiving COPD palliative care
Categories: Volume 12 - Number 2

The U.S. Preventative Services Task Force: What You Should Know

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As you know, COPD diagnosis rates are disturbingly low and as a result, the National Institutes of Health estimate that nearly half of the 30 million Americans with COPD are undiagnosed and unaware of their condition. You may also know the COPD Foundation fights tireless to increase screenings, raise public awareness, and most importantly, improve early diagnosis.

An early diagnosis can change patient’s lives as we at the COPDF have seen firsthand. Getting a diagnosis can be the motivation you needed to finally start using that treadmill or it could mean finally having a name for the symptoms you’ve been living with for years. It could connect you with a dynamite pulmonary rehab team or introduce you to your new best friends in your COPD support group. A COPD diagnosis changes lives and because of our commitment to early COPD diagnosis we were disappointed at the U.S. Preventative Services Task Force’s (USPSTF) recent report this spring recommending against screening for COPD in those who do not display symptoms.

This recent recommendation is shortsighted in its claim that neither early screenings nor available treatment options would alter the course of the disease. As many of you know, this is simply not true. This claim fails to treat a person instead of a disease. COPD treatments such as supplemental oxygen, bronchodilators and inhaled steroids can reduce the symptoms of COPD therefore allowing individuals to continue to live healthy, productive lives. An early diagnosis could mean the difference between continuing to work thanks to disease management strategies learned from your respiratory therapists or finally having the exacerbation that pushes you to file for disability rather than have another attack at work. A diagnosis encourages individuals and their families to become engaged with the patient’s health by learning more about living with COPD and options available to help them manage. Without a diagnosis, too many patients simply stop doing the activities they love in an effort simply to breathe. A diagnosis gives COPD patients the knowledge and tools to manage their disease.

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Tags: COPD diagnosis screening U.S. Preventative Services Task Force
Categories: Volume 12 - Number 2

Developing a Roadmap for Bronchiectasis Research – Lend Your Voice Now!

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Earlier this year, the COPD Foundation began working with Oregon Health & Sciences University (OHSU) and NTM Info & Research on a Patient-Centered Outcomes Research Institute (PCORI)-funded project designed to identify priorities and create a roadmap for bronchiectasis research.

Bronchiectasis research survey There are no published U.S. guidelines for bronchiectasis treatment in patients without underlying cystic fibrosis, but in 2010 the British Thoracic Society produced guidelines summarizing current therapies. These guidelines revealed a lack of safety and effectiveness data to guide treatment of bronchiectasis, and highlighted the need for research in many aspects of this disease.

These guidelines did not take a patient-centered approach and to date there has been little or no patient input into the research of this often-devastating disease. There are a number of new therapies being tested, including ciprofloxacin and other inhaled or oral antibiotics. The goals of therapy involve maintaining quality of life and minimizing disease progression and it is believed that a number of untested therapies (e.g. antibiotics, steroids, bronchodilators, hypertonic saline, others) are routinely being used.

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Tags: bronchiectasis and NTM survey
Categories: Volume 12 - Number 2

COPD360social Update: 22K Members and Counting

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“COPD360social has been a lifeline for me. I don’t know anyone else with COPD (in my area). I have found needed info, made new friends (who understand) and I hope I’ve been in some way helpful to the other COPDers. I no longer feel alone....Thank you all.” -Bon Bon

Over 22,000 members from all over 100 countries have connected to form COPD360social.org- the one-of-a-kind social networking community dedicated to helping those affected by COPD. The social platform provides individuals with a chance to meet, connect, and share their experiences from the comfort of their homes. Your thoughts, concerns, fears, and inspiration are important to us. Become a part of our interactive, collaborative community to find friends, learn about events in your area, participate in research, chat with the experts, and learn how to take action – all on your time, at your pace. COPD360social provides our members with a break from the isolation that so many of us experience while living with COPD. We lean on each other during the time we are confined to our homes, and give each other the motivation to push forward.

COPD social community online Launched on World COPD Day, November 19, 2014, the site was developed in an effort to serve as a comprehensive platform for patients, caregivers, providers, and friends in the COPD community. It is a comfortable and secure place to meet people with COPD, their family members, caregivers and friends, as well as healthcare providers. Here you will find answers, access quality educational materials, participate in research, become an advocate, and connect with new friends. You can choose what you want to gain from the community – from sharing ideas and inspiration, to participating in research, or learning how to lobby on Capitol Hill. COPD360social is an invaluable resource for the 30 million of us touched by the third leading cause of death by serving as a one-stop shop for COPD. It is a part of the Foundation’s aim to utilize technology to better understand the patient experience from a holistic perspective.

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Tags: community for COPD COPD360social social
Categories: Volume 12 - Number 2

Preparing for Fall

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As is usually the case, summer seems to have gone far too quickly, but in the case of many with COPD, fall cannot come quickly enough. While the changing of the seasons offers cooler temperatures, making it easier to breathe, it also offers challenges.

Allergies impact an estimated 35 million Americans, and can greatly affect those with COPD. There are three seasonal allergy periods throughout the year. In spring, pollen from trees can cause allergic responses, while in summer the culprit is often grass pollen. From late summer to late fall (however in warmer areas the season could last the entire winter), weeds pollinate and become a large producer of inhaled allergens along with mold spores.

Living with COPD and allergy season The most notable contributor is the ragweed. Ragweed primarily grows east of the Rocky Mountains and is the largest contributor to fall allergy problems. A single plant may produce a billion grains of pollen, and that pollen can remain in the air for long periods of time and travel several hundred miles.

Mold spores develop in autumn and are found in the soil and in the leaves that fall to the ground. Mold spores are easily inhaled, and tend to rise in the morning and fall back to the ground as evening temperatures cool. For people with already compromised lungs susceptible to seasonal allergies, breathing airborne allergens can greatly complicate their breathing and often require medical treatment.

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Tags: allergies autumn COPD ragweed
Categories: Volume 12 - Number 2

COPD Foundation Celebrates Nick Jones Through Breathe STRONG Rally

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The world lost a steadfast advocate and a warm-hearted man in the passing of Nick Jones of The Villages, Florida in October of last year. Nick was a trailblazer in the COPD field and he made his mark on the community as the president and co-founder of The Villages “Airheads” - the first COPD support group in his area. The innovative group became the model for other Airheads chapters across the country. Along with his wife Jan, he taught breathing and exercise classes through the Village’s recreational department and “Living Well with COPD” at the Lifelong Learning College. Those who knew Nick realized he spent little time dwelling on things he could not change, and instead devoted his efforts to staying positive and helping others.

“ His contribution provided individuals living with chronic obstructive pulmonary disease with a forum to learn about their medical issues, exchange ideas, strengthen minds and bodies through exercise, advise young people of the dangers of using tobacco, and make the general public aware of COPD. Among many of the gifts the group provided was the Annual Airheads Scholarship for outstanding high school students to attend college. Nick Jones proved that change was possible with the right attitude, and planted seeds of hope and inspiration- not only to his peers in The Villages Airheads but to the youth in his community as well.

On February 17, 2016, the Villages Airheads came together to honor the beloved founder of their group. The Nick Jones Breathe STRONG Rally commemorated Nick and celebrated his life, passions, and accomplishments. Cheerleaders, speakers, and entertainers spent the day expressing their gratitude to a man who not only helped change their attitude about living well with COPD, but their outlook on life. The education and guidance from The Village Airheads provided the support and encouragement for many individuals to seek early diagnosis and receive proper treatment of the disease.

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Tags: Breathe STRONG Rally Nick Jones
Categories: Volume 12 - Number 1

COPD Community Education Workshops in Montana and Michigan

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By Jane Martin, BA, LRT, CRT, Associate Director, Education, COPD Foundation

The COPD Foundation education department has been on the go! Since last fall, the Pulmonary Education Program (PEP) co-hosted two COPD Community Education workshops in Missoula, Montana and Midland, Michigan.

Missoula
On Saturday, September 19, 2015, over 80 people met at Providence Saint Patrick Hospital in beautiful Missoula, Montana to participate in a day of COPD education, information and support. Many thanks to our two PEP Pulmonary Rehab Centers in Missoula, led by Colleen Holmquist, BS, RRT at Community Medical Center and Susi Mathis, MS, RCEPCES, RN, at Providence Saint Patrick who helped make this event a success.

“Chart The day began with health care professionals attending a talk by Scott Cerreta, Director of Education for the COPD Foundation, on “Putting COPD Guidelines into Place.” Dr. Steven Gaskill from the University of Montana then discussed “COPD Co-Morbidities and Exercise, and “Dr. Robert “Sandy” Sandhaus from National Jewish Health presented “COPD or Asthma, Could it be Both?” Scott Cerreta rounded out the morning with “Understanding COPD – Recent Research and the Evolving Definition of COPD.” The Community portion of a COPD Community Education Workshop is an especially exciting time with individuals impacted by COPD (those diagnosed with COPD, their family members and caregivers) coming together to hear, see and learn and meet others with many of the same concerns.

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Tags: community education workshop
Categories: Volume 12 - Number 1

Caregiver Action Network: Caring for Those Who Care for Loved Ones

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By John Schall, CEO, Caregiver Action Network

In 1991, two friends – one caring for her mother with Parkinson’s; one caring for her husband with MS – discovered similarities in their issues as caregivers. Realizing that others must be in the same situation, they made it their mission to provide support to others who may not know how to reach out for help and who did not even know the phrase “family caregiver.”

Since 1993, Washington, D.C.-based Caregiver Action Network (the National Family Caregivers Association) has been tirelessly working to advance resourcefulness and respect for family caregivers across the country. There is now so much more support for family caregivers than when CAN began, and much of the progress is due to the work of this organization.

CAN Caregiver Action Network continues to be the nation’s leading family caregiver organization working to improve the quality of life and to promote resourcefulness and respect for the more than 90 million Americans who care for loved ones with chronic conditions, disabilities, disease, or the frailties of old age. CAN serves a broad spectrum of family caregivers ranging from the parents of children with special needs, to the families and friends of wounded soldiers; from a young couple dealing with a diagnosis of MS, to adult children caring for parents with Alzheimer’s disease. CAN is a non-profit organization providing education, peer support, and resources to family caregivers across the country free of charge.

Some of the major accomplishments during these many years include the huge rise in public awareness of family caregiving as measured by the enormous growth in media coverage; the passage of the National Family Caregivers Support Program; the acceptance of the term “family caregiver” by thought leaders; and the realization by government officials and others that family caregiving is a lifespan issue, not one just restricted to the aging community.

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Tags: Caregiver Action Network
Categories: Volume 12 - Number 1

COPD Foundation launches new online community for Bronchiectasis and NTM patients

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Bronchiectasis is a form of progressive, chronic pulmonary obstructive disease in which the walls of the bronchial airways to one or both lungs become enlarged, infected and permanently damaged. While some causes of bronchiectasis are either congenital - due to a genetic defect, like Cystic Fibrosis or Primary Ciliary Dyskinesia and may already arise during fetal development or in infants and young children - far more common are cases acquired by older children or adults after recurrent infections of the lung or heavy smoking. Damaged lungs are less able to clear mucosal secretions, so mucus may congest in airways, allowing bacteria to thrive there, and in turn causing additional problems. Symptoms of Non-cystic Fibrosis Bronchiectasis (NCFB) include: shortness of breath and persistent coughing. At present, there is no known cure for this condition, but research is underway to help better understand their causes and identify more effective treatments.

BronchNTM Nontuberculous mycobacteria, or NTM, can cause devastating chronic lung infections. NTMs are naturally occurring pathogens which impact tens of thousands of people every year in the United States alone. The bacteria are widely found in the environment, including soil and tap water. Underlying pulmonary problems and prior pneumonia are but a few risk factors. COPD and bronchiectasis as well as a number of genetic diseases including Cystic Fibrosis and Alpha-1 Antitrypsin Deficiency have a statistically demonstrable link with NTM. Immunosuppressive medications such as chemotherapy, prednisone, or drugs used to treat conditions such as Rheumatoid Arthritis, psoriasis and Crohn’s Disease, may increase the risk of NTM infection. Treatment for NTM lung infections is lengthy and difficult, involving a minimum of three antibiotics for at least 18 months. These antibiotics can be taken in oral, inhaled or injectable/intravenous form.

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Tags: Bronchiectasis MAC NTM
Categories: Volume 12 - Number 1

Medicare Answers Now Readily Available to the COPD Community

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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.

The COPD Foundation is pleased to be working with the Medicare Rights Center, the largest and most reliable independent source of Medicare Information and assistance in the United States, to promote its newest tool, Medicare Interactive.

Judy 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 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: Medicare Rights
Categories: Volume 12 - Number 1

Armed with Education, Judy Benefiel Fought For Her Life

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Judy Benefiel is a self-proclaimed fighter. She has survived malignant melanoma, a severe subarachnoid hemorrhage, breast cancer, and in 2001, she was diagnosed with chronic obstructive pulmonary disease. When she initially learned about her disease, she hadn’t even heard of the term let alone how to live with it. Soon after her diagnosis Judy found herself in and out of the hospital with lung infections, unable to complete simple tasks, and using oxygen along with several medications just to get through the day.

Judy Benefiel Ten years later, Judy was accompanied by her best friend Courtney to a routine visit with her pulmonary specialist. Courtney asked the specialist if he would recommend Judy for a lung transplant, and to their surprise, he did. When the Tampa General Hospital stated they would like to see Judy for pre-testing, she was determined to take her life back.

“At this point I knew it was the time to put on my armor and start the fight of my life,” Judy said.

A year and a half later in December 2012, Judy was placed on the list for a double lung transplant. She was visited her doctors regularly and received hundreds of tests during the time she desperately waited. As if she had not been through enough, one of the many tests determined Judy had breast cancer and she would therefore have to be taken off of the transplant list. Judy was devastated.

“It was a very sad time and a lot of tears were shed as they told me I would have to be temporarily taken off the transplant list and they didn’t know if I would be put back on,” she explained.

Judy completed her cancer treatments by June 2013, all the while living with the challenges of COPD and waiting for any good news from Tampa General Hospital. On a typical afternoon she quietly read her COPD Digest and came across an article: Lung Volume Reduction Surgery: Is It For You?

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Tags: COPD Digest Education Judy Benefiel Lung Volume Reduction Surgery
Categories: Volume 12 - Number 1

Harmonicas for Health: Making Breathing Fun in Tennessee

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By Stephanie Williams, BS, RRT, Community Programs Manager, COPD Foundation

In January 2016, the COPD Foundation, with a grant from the Academy of Country Music’s Lifting Lives Foundation, partnered with Saint Thomas Rutherford Hospital in Murfreesboro, Tennessee to offer “Harmonicas for Health” through their pulmonary rehabilitation program. The initiative focused on the use of harmonicas to help their patients feel better and breathe better.

Harmonicas for Health The idea was a simple one: encourage people to practice the Pursed Lip Breathing (PLB) technique, and exercise their ‘breathing muscles.’ When PLB is done regularly, it helps to remove carbon dioxide from the lungs and it also helps to create more space in the lung for bigger, fuller breaths.

Playing a harmonica is the perfect way to get people to practice PLB without realizing it. By blowing out into the tiny holes in the mouthpiece, COPD patients are practicing the PLB technique and getting the benefit while having fun. By breathing in through those same tiny holes, the person begins to exercise and strengthen their breathing muscles. And the best part is they don’t have to read music or have any musical experience to practice.

As our planning group prepared for the program, we anticipated having around 6-8 people attend the first meeting. We were pleasantly surprised when we had 24 individuals present at the first class. The group met once a week, for an hour each session and practiced the material in the Player Handbook we provided. The handbook came with instructions on how to play, how to ‘read’ the music, and information to help a person with COPD understand how this program is designed to help.

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Tags: Harmonicas for Health pulmonary rehabilitation
Categories: Volume 12 - Number 1

COPD Town Hall Meeting Hosted by NHLBI

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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. This 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.

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Tags: COPD Townhall National COPD Action Plan
Categories: Volume 12 - Number 1

2016 Marks the Fifth Anniversary of the CDC’s "Tips From Former Smokers" Campaign

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The U.S. Centers for Disease Control and Prevention (CDC) marks its fifth year of ads featuring real people who are living with the effects of smoking-related diseases. The newest ads in the Tips from Former Smokers campaign tell the story of how real people’s lives were changed forever due to their smoking.

Over 30 people have offered their voice and story to the Tips campaign since 2012. Each real story represents millions of Americans suffering from similar illnesses caused by smoking. One such story highlights Becky, 54, who lives with COPD.

CDC Tips From Former Smokers Becky started smoking as a teenager in 1976 to fit in with her peers. After attending college in Ohio, Becky attended law school to pursue her dream of working as a public defender. For the next several years, Becky experienced spells of bronchitis and a persistent cough. Despite warnings from her doctors, she could not quit smoking. "I just didn't want to hear it," said Becky. At age 45, she was diagnosed with COPD.

One day in 2012 Becky found herself completely breathless. She called 911 in a panic and was immediately given oxygen when the ambulance arrived. Becky soon learned that she would require a lung transplant and have to quit her job.

“I wasn’t expecting any of this. That absolutely floored me. I just didn’t see it coming,” Becky said. “I finally put cigarettes down for good when it became obvious to me that the dang things were really going to kill me. They had already stolen so much from me; I was not going to let them kill me outright,” she said.

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Tags: CDC Tips From Former Smokers
Categories: Volume 12 - Number 1

"If You Rest, You Rust" - The Importance of Pulmonary Rehab

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Ever since Caridad, or Cary, was young she knew she wanted to help others. In high school, Cary took a tour at a local hospital with a respiratory therapist and saw him work closely with a nurse. He and the nurse make all the patients they encountered feel more comfortable and Cary was inspired. In 1994, she found herself working as a respiratory therapist at South Miami Hospital.

For six years Cary worked twelve hour night shifts, three days a week in ICU and SICU with critical care patients on ventilators. “I enjoyed being part of a team that would help heal someone back to good health,” Cary said. Two and a half years later, Cary started working a dayshift position at the South Miami Hospital pulmonary rehabilitation center. “It was a dream come true because I always wanted to be involved in education.”

For the past 14 years Cary has been working in South Miami Hospital’s pulmonary rehabilitation center and loves it. We followed up with Cary to learn more about the benefits of pulmonary rehab, as well as the free workshops offered at South Miami Hospital.

What is pulmonary rehabilitation and why is it important for individuals living with COPD?

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Tags: pulmonary rehabilitation South Miami Hospital
Categories: Volume 12 - Number 1

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