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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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Articles for category Personal Stories

Two Years Later... Julie Nimoy Remembers Her Dad

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This blog post was written by Julie Nimoy, daughter of late actor and COPD advocate, Leonard Nimoy.

It’s hard to believe that two years have flown by since my Dad, Leonard Nimoy, passed away on February 27, 2015. I miss him every day, but he's always in my heart and on my mind. It’s definitely been tough at times, wishing he was here with me, as I always thought of dad as my “rock,” someone who always had “my back” and who I could always go to with anything that was happening in my life.

Producing our film "Remembering Leonard Nimoy" has kept him close to me throughout the past two years. The process of creating this film let me recount special memories and stories about my relationship with him as well as look at photographs, listen to the wonderful stories told by the family and hear his voice during his archive interviews.

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Tags: Leonard Nimoy
Categories: Personal Stories

Why Advocate?

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This blog post was written by Karen Deitemeyer, COPD State Captain and community advocate.

Do you remember what the Lorax said? “Unless someone like you cares a whole awful lot, nothing is going to get done. It’s not.”

Lorax quotes

Well, that’s pretty much how I feel and why I have been an advocate for various issues for most of my life. I remember, as a child, going with my mother to various American Cancer Society (ACS) events in my hometown – selling daffodils to raise money for the ACS.

Then, when I was a teenager, my mother had to have a radical mastectomy. For many years as an adult I advocated for more and more research dollars for the ACS, for more support and more awareness of breast cancer. The increased funding has led to less disfiguring, less radical surgeries, and when I was diagnosed with breast cancer in 2008, I had many more options, and a much greater chance of survival than my mother did.

I was officially diagnosed with COPD in 2001, but it wasn’t until a few months after my breast cancer surgery in 2008 that I realized that although breast cancer has many advocates, who raise lots of funds and awareness, there was nothing comparable for COPD.

So I chose to focus my energy on COPD - to speak to decision makers, to other patients, to providers, to anyone who would listen. COPD has been ignored for way too long!! The death rate from COPD is greater than the death rate from breast cancer and diabetes combined, yet those two diseases receive far more funding and awareness.

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Tags: advocacy COPD get involved Lorax quotes patient-powered research network
Categories: Personal Stories

An Amazing Journey to the Top of the World

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This blog post was written by Janina Kowalski, Associate Director of Development at the COPD Foundation.

It is June 2016 and Chase Hinckley is making his way towards the world’s second highest mountain, K2. A foreboding mountain on the China-Pakistan border, K2 sits at an elevation of 28,251 ft. It’s a uniquely challenging mountain that has only seen 306 people summit its peak and never during the winter.

Climbing the K2 for COPD K2 sits about 800 feet below Mt. Everest but unlike it, features very little flat terrain. K2 is a very difficult and technical climb; the mountain is a cone of ice and limestone with 45-degree angles. It is considered a harder climb than Everest because it is a steep mountain with unpredictable weather.

To put it simply, K2 is the ultimate challenge. For Chase Hinckley, climbing K2 is not only a challenge of his own personal limits, but an opportunity to raise funds for COPD.

Why is Chase Hinckley climbing K2 for COPD? For Chase, COPD hits close to home. His grandmother has been living with COPD for years and he’s been touched by her struggle.

Chase is no stranger to mountains; he’s scaled Denali, Mt. Rainier, and Kilimanjaro. Chase feels that his experiences mountaineering has given him a unique perspective in what it is like to struggle for air.

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Tags: climbing COPD awareness K2 savage mountain
Categories: Personal Stories

Practicing What We Preach! Living with Co-Morbidities...

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This blog post was written by COPD State Captain, “Uncle” Jim Nelson. Uncle Jim and his wife, Aunt Mary, are active COPD advocates. They describe their experience with COPD and a recent diagnosis of prostate cancer below.

Those who know us, or who have read our writings or heard our speeches over the past few years, know that we express a boundless enthusiasm for the activities and attitudes that help us get through the day. We speak from many years of experience with lung disease, with the struggle to function, with the use of oxygen, and finally with the adventure of a double lung transplant. We have been, as they say, "there..."

Well, here we are again. My PSA (Prostate Specific Antigen) level had risen sharply- a cause for concern! A biopsy led to a diagnosis of prostate cancer.

Knowledge is power - We have always preached that it is better to learn as much as possible about any malady that might be affecting you. Uncertainty leads to stress, a feeling of loss of control, and fear. Knowledge about your disease might not be pleasant, but it is truly valuable to learn about what to expect and the possibilities of treatment.

Being your own best advocate - It is no secret that a patient will receive better care, will be more well-informed, and generally will stay healthier if they have an advocate, someone who is willing to and capable of understanding the needs of the patient. The advocate can be a caregiver, a family member, or a professional. “John

Can you become your own best advocate? You, the patient, are the center of this whole fiasco! It is in your best interest to have someone on your side, someone who knows what you are going through, someone who really, really cares. Why not you? That does not mean that you have to get up on your high horse and start demanding stuff! Quite the contrary. You can get a lot more cooperation from your caregivers and medical professionals with a smile and a bit of patience.

Do your research - We know more than we ever wanted to know about prostate cancer, its symptoms, its manifestations, and its treatment. We have learned that there are a variety of approaches, including surgeries, hormone therapy, and radiation methods. We have chosen surgery.

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Tags: Co-morbidities Living with COPD
Categories: Personal Stories

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

COPD360social Profile: Orlan W. Holmes

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To say the members of our COPD community are resilient is an understatement. COPD advocate Orlan W. Holmes of Fort Wayne, Indiana exemplifies the fighting spirit that we see in so many who refuse to be defeated by COPD. A single father and sole provider, Orlan raised three children as he worked many jobs to make ends meet. He was the Assistant Manager at Dollar Tree when he became sick with pneumonia and spent 13 days in the hospital. He was diagnosed with severe COPD and cardiomyopathy, and his eldest daughter was told to put his affairs in order - that was 13 years ago.

We followed up with Orlan to learn more about his remarkable story of survival, hard work, and advocacy.

How did your COPD diagnosis change your life?
This was the first time I heard of COPD. I went from working full time to being totally disabled in just under two weeks. The first impact on me was financial. I had to cash in my 401k to survive until I received my first disability check. My breathing was labored and I was soon on oxygen all the time. Hills, walks, and cold weather - perfumes, car exhaust, vacuum cleaner dust, and many other things caused me to lose my breath. I became more and more sickly and was in and out of the hospital many times over the next 10 years.

Orlan Holmes Did you make any changes to the way you lived after the diagnosis?
I went to cardio-pulmonary therapy. This helped a lot and gave me strength to continue. I quit smoking and then qualified for a double lung transplant. I tried to get one at a local center and they told me my only hope was the Cleveland Clinic. Cleveland Clinic accepted me and I spent the next 3 years waiting for a phone call.

While I was waiting I met some wonderful people that were involved with the American Lung Association of Indianapolis. I started attending their Healthy Lung Expo. I also became acquainted with the COPD and the Alpha-1 Foundations. My friends started an Alpha-1 Support group in Fort Wayne and I proposed that we make it a COPD and Alpha-1 Support group. My offer was accepted.

On August 3, 2012, I received a phone call from Cleveland clinic and I received new lungs. All went well until six months out when I had complication. I spent the next two months in the hospital. My complications caused my liver and kidneys to shut down besides giving me congestive heart failure. They eventually changed my medications and things have gone pretty smoothly since then.

What advice do you have for other family members coping with a COPD diagnosis?
For family members and caregivers I would advise you to be patient. Slow down and wait on those of us that can’t breathe. Be positive and supportive if possible at all times. Be patient, we not only move slower, our brain doesn’t process as well as it used to. Sometimes it takes it longer for us to process what we want to say or understand others.

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Tags: COPD patient Profile story
Categories: Personal Stories

Honoring our Veterans

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We are deeply grateful to those who have sacrificed for our country to protect and uphold American ideals and freedom. We honor all military veterans today and extend a heartfelt “Thank You” for their service.

Did you know veterans face a higher risk of developing COPD?

You might be surprised to learn that:

  • Veterans are 3x more likely to develop COPD than the civilian population
  • COPD is the fourth most prevalent disease in the veteran population
  • COPD affects approximately 15% of Department of Veterans Affairs healthcare users

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Tags: at-risk Honor MeAndCOPD Veterans
Categories: Personal Stories

Air Quality from a User’s Standpoint

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This is a guest blog post from Jim Nelson, an individual living with COPD.

Prior to the major miracle of a lung transplant, I had emphysema and chronic bronchitis, also known as chronic obstructive pulmonary disease, or COPD. That means that my lung capacity was only a fraction of what it should have been, given my age, weight, etc. The measure of lung function is a major factor in the diagnosis of COPD. I should have been able to expel about three liters of air in a second. My tests revealed that I was only blowing out about 6/10 of liter, or 21% of normal.

“Jim It also meant that my respiratory system was super-sensitive to air pollution in any form. That included things such as particulate matter–dust, carbon monoxide, and ground level ozone. Ozone at ground level can be a very bad thing, especially for those of us who have enough trouble breathing without any outside interference! Sunlight and hot weather combine with auto exhaust, gasoline vapors, industrial emissions, and chemical solvents to form harmful levels of ozone.

Many urban areas tend to have high levels of “bad” ozone, but even rural areas are subject to increased ozone levels because wind carries ozone and the pollutants that form it hundreds of miles away from their original sources. As our population ages and the effects of tobacco use damage more and more lungs, it will become even more important to concentrate on improving the quality of our air.

Despite our best efforts, bad air will tend to find us. We owe it to ourselves to shy away from smokers, to stay indoors on bad air days, to wear a surgical mask if we are exposed to pollutants. Roll up the car windows and use the air conditioner if the outside air is loaded with dust or smog. If you are exposed to dust or pollen or the like, a shower before bed is a good idea.

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Tags: air quality MeAndCOPD patient stories
Categories: Personal Stories

Making a Ripple

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Despite being the third leading cause of death in the U.S., COPD is still unknown to many people. Bhavya Malladi and her grandfather, Evani RJ Rao, were among those people when he was diagnosed with COPD in October 2012. Upon his diagnosis, the lack of awareness and knowledge of such a devastating disease shocked Bhavya. She has since made it her mission to educate people around her so that no one else she loved would have to suffer the way her grandfather is.

Evani, 70, spent his life working as a hydro-geologist in India, and was exposed to dust from open field drilling. Although he quit smoking at the age of 53, Bhavya attributes the toxic fumes from his job and 20 years of smoking to her grandfather’s diagnosis. Within a year of being diagnosed, his condition drastically worsened. As she lives in California, and her grandfather lives in India, long phone calls with him have unfortunately become a thing of the past, because simply talking for a long period of time is too exhausting for him.

A fond memory she holds of Evani are long walks with him and her brother to a local candy store in India where they would buy their favorite chocolates and candies. They would walk back home while listening to him tell stories of India. As the years have progressed, this tradition has become impossible for Evani.

Seeing this debilitating disease progress so rapidly, Bhavya began to ask herself, “Why is it still so unfamiliar to people?” Bhavya has decided to honor her grandfather by making a difference.

“Never underestimate the difference you can make. Remember, even a tiny drop can make ripples,” she says.

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Tags: art awareness dance impact make a difference
Categories: Personal Stories

Running for his Father and the COPD Community

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Justin Daniels is a distance runner from Richmond, Indiana who is dedicated to honoring those who live with COPD by racing in all 50 states in 2015. He started his hobby when his father Leonard, 60, was diagnosed with COPD. “His lungs don’t work very well, so I am making it my mission to spread awareness about this disease,” Justin says. “I set up a booth at each event I am running with information that I am able to pass out to anyone wanting to know more about what I am doing. My mom helps pass out the information while I am running my races, but before and after I am at the booth or walking throughout the area asking people if they know someone living with COPD.”

The COPD Foundation caught up Justin to learn more about his efforts:

Q: How long have you been a runner?

A: I started out running while I was in high school as a Junior and Senior where I was a member of the cross country team as well as the track team. I started getting serious about distance running in 2011 when I found out my dad had COPD. I felt like I needed to do something not only for him but for everyone else living with the disease. I knew there wasn’t much I could really do besides make people more aware of what COPD actually is, as well try and raise money to help find a cure.

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Tags: advocate awareness cure Daniels for Justin running state captain
Categories: Personal Stories

A COPD Story Comes Full Circle

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Joe Morrison has a unique COPD story that has come full circle. His father Chuck was diagnosed with COPD in 2006, prompting Morrison to become an advocate for greater awareness around the disease. His advocacy efforts for the COPD Foundation brought him to our Annual Awards & Recognition Benefit in December 2011 in New York City, where he met Dr. Forrest M. Bird, inventor of the first practical mass-produced medical respirator and “Babybird” respirator—a pediatric respirator that saved the life of one of Morrison’s children, Brendan.

“I don’t know if there are words to describe how I felt. I am grateful beyond anything I can even say. The fact that I almost lost my son and he survived, and survived without have any kind of after-affects, there are no words to describe that,” Morrison says. “I would rate being able to thank Dr. Bird in person one of the top 10 things in my life. That’s big—I’m married and have four kids, so those are my top five right there. I can’t really accurately describe how great it felt to go to the person responsible for such an amazing device that has saved so many children, including my own.”

Brendan was born June 19th, 2005, and because of complications during birth, had to be rushed to another hospital and was put on the Babybird respirator.

“How well it functioned was reason enough to not have to put him on a bypass machine, and otherwise, he would have been kept in the hospital much longer with a much harder road for recovery,” Morrison says. “Today, Brendan has no affects from the lack of oxygen [at birth].”

“I’ve been very lucky to have been able to meet a lot of amazing people in my life, but to shake his [Dr. Bird’s] hand and look into his eyes, you can just tell he is someone with an enormous heart and incredible intellect. Within five seconds it was apparent what kind of an amazing person he is.”

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Categories: Caregivers and Caregiving Personal Stories Related COPD News

Live in the Moment

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As a baker, Scott Johnson says his job can cause some difficulty with his COPD; but that doesn’t stop him from doing what he loves. In his words, “Even though I do have the disease I don’t let it bring me down. I just enjoy the day and live in the moment.”

Johnson was diagnosed with COPD in his 40s. He says he had asthma for years.

“Working in the bakery, I have my ups and downs and high humidity is a real struggle for me. Anything that’s really dusty or has a real strong smell sets me off,” Johnson says of his job that goes from 3AM to 11AM. “I’m used to it [the hours] now, and I’ve been in the profession for 32 years.

“I am not on oxygen yet, and I have my good days and bad days. On my bad days I force myself to do things—I’ll take breaks when I run out of breath—but I get things done.”

Living in Minnesota, Johnson says the bitter winters can be difficult, and the summers are humid, which also makes breathing difficult.

“On those days, I just don’t do a lot outside, because if I do, I struggle with it. But I don’t want COPD to rule my life,” he says.

Although now he has to do things at a slower pace, he still does them.

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Tags: baking lifestyle living passion
Categories: Personal Stories

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