This article was written by Pam DeNardo, a COPD patient advocate and part of our COPD Foundation team. If you are interested in sharing your stories about living with COPD during the COVID-19 pandemic, please email us at statecaptains@copdfoundation.org.

I am a semi-retired single woman living in a 55 and over retirement community of over one thousand units in a village like setting in Fort Myers, Florida. The social activities here are many and well attended. Golf Course, six pools, tennis courts and gym to name a few. We even have our own restaurant. So, you can imagine it's pretty lively here. Until recently. I look out my windows now and see no one. In the early mornings and just before the sun goes down you will see people walking and keeping safe distances. It's a little comical as everyone wants to talk but they have to holler at each other in order to be heard.

Usually at this time of year the snowbirds leave, and the community slows down. This year however, the northerners don't want to go home. Especially if they come from a "hot spot". Now that Florida's numbers are climbing that may change.

As a COPD patient of 20 years I am pretty resilient and I am used to some isolation. And working with the COPD community I have been pretty much oblivious of how others with different physical problems cope. Since the pandemic I have seen some incredible acts of humanity and kindness and am amazed at how we can make this work socially. On my birthday some of my neighbors put a cake by my front door and sang happy birthday from the street. I will be in the next group for the next birthday.

I have had to adjust how I shop. Drug stores are no problem as I order online (or doc calls it in) they tell me when to pick up and I use drive up. Grocery stores are a little more difficult. At first, I tried to shop in person as usual. Waiting to get in, trying to keep 6 feet of distance, (especially while others were not), wiping things down before I picked them up, checking out and finally going home only to have to wipe everything down again before putting away. I found all this exhausting and needed a nap.

Read More

This article was written by John Linnell. John is a COPD Patient diagnosed in 2005 and left the workforce in 2011. After being involved in an internet awareness film and sharing his story, John decided his efforts would be best spent doing advocacy work for the COPD community. John is a member of the Board of Directors for the US COPD Coalition and is a COPD Foundation State Captain for Wisconsin. He also serves on the Executive Board of Directors for EFFORTS (an international support group for COPD) as well as on the Governing Board for the COPD PPRN (Patient Powered Research Network) for PCORI.

As a COPD patient and patient advocate, the current COVID-19 pandemic brings to mind so many thoughts, tips for fellow patients, and yet hope for us all.

My initial thought, a few weeks ago, was “Well, welcome to my world”. The COPD patient has always had to be cautious and protect against respiratory infections. It’s how we live. Now, the entire world is having to. Then, I realized that this was an incredibly selfish thought. Why would I want to “welcome” anyone to this type of life? So, it became a moment of teaching and sharing! Here are some tips to help us get through this most unusual time - tips for all of us, not just those with respiratory issues such as COPD:

• Stay home - Just stay home whenever possible. I am finding it a good time to catch up on the many “to-do’s” that keep getting put on the back burner. It’s a great time to work on a hobby. For myself, I like to cook and have made a wonderful Chocolate Ganache Tart, a loaf of Amish Sweet Bread, a new recipe for Chicken Fettuccine Alfredo, and some Coconut Shrimp. It also was the perfect occasion to clean out the freezer (you do not want to know what all was found).
• Arrange in advance (now) for friends/family to be able to run errands for you should need be. This will get worse, and it may be unsafe to leave your home...period. While not wanting to put others at risk, it may be safe for them but not for you. Nonetheless, it is a conversation best had now and not later.
• When possible, order refills of medications you may be taking, especially inhaled medications. Pharmacies might be willing to refill a little time before the refill is technically due. (I say this with hope, not with foreknowledge.) Check on your levels of other needed supplies. Don’t buy the shelves bare but do have enough for a month or so. The supply chain is still working. Toilet paper is still being manufactured.
• Stay active!! You can still go for walks, take the dog out, get some fresh air. Do so only when not in densely populated areas and be sure to maintain distance from others that are hopefully outdoors doing the same. This “sheltering in place” should surely not be taken as a directive to just sit on the couch and watch every single rerun of I Love Lucy (although, I do love Lucy). This is especially directed at those of us with respiratory diseases. Inactivity is a slippery slope, indeed. “The Less We Do, The Less We Are Able to Do” No treadmill? Then walk in place if you can’t or shouldn’t go outside. There are also many online pulmonary exercise options that are currently being provided at no cost in order to help us through this!!
• Practice “physical distancing”. I personally do not like the phrase “social distancing”. We need to be social; we need each other now more than ever! We simply need to be physically apart…...but we must be social to maintain our sanity. Be a friend! Maybe this is a good time to make a phone call to that old buddy or friend that you had been thinking about. Don’t text,,,call them!! Reconnect. Be social. You can take the lead and make this first step. I did, and it was so fun reconnecting and sharing memories.
• Consider practicing Mindful Awareness, meditation, yoga, or getting lost in a good book. Whether you like it or not, you certainly now have the time to do just that.
• Keep somewhat of a schedule, lest you get lost in the day and wind up accomplishing nothing. Have set mealtimes. Set aside times to read, meditate, or just relax. Hold yourself accountable for getting your daily goals accomplished so as not to fritter away the day. Even for those of us that already are homebound due to our COPD or other respiratory condition, this can be an awakening - Do we really make the best use of our time? For myself, I have learned a lot and changed my pattern. I get more done, yet I somehow seem to have more “me” time.
• Get and/or stay involved with peer support groups on social media. You need the ongoing support as well as the other members are needing you as well. They worry about you and welcome your participation. You count, so be present for them. One excellent group is the COPD Foundation’s COPD360Social
• Advocate!! You still have a voice, and now you certainly have the time. Write to your legislators, both local and Federal, asking for their support in: - asking CMS to waive formulary restrictions on inhaled medications; - ask CMS and Congress to allow at least a temporarily allowing RRTs (respiratory therapists) to be able to practice via telehealth, home visits, and relaxing the supervisory requirements under Plan B. (You can access the full request from the US COPD Coalition)

Read More

Caroline Gainer is a COPD patient and State Captain from West Virginia. As an advocate she has participated in research initiatives, advocacy efforts with her local, state, and federal officials, and regularly spreads awareness about COPD through local health fairs. To learn more about the COPD Foundation State Captain program, click here!

What is your connection with COPD? What is your COPD story?

In 2013, I went to my annual physical and was diagnosed with COPD. I had no symptoms at the time, so it came as a surprise to me. In September of 2014, my lung collapsed, and I was hospitalized. After my hospitalization, I was referred to a pulmonologist who formally diagnosed me with severe asthma and emphysema. At that time, I was put on medication to help with my constant coughing, and gaging. I remember having to set my alarm clock an extra 30 minutes earlier to get ready for work because I could not stop coughing and felt that I couldn’t catch my breath. Little activities like getting dressed and walking to the car felt challenging.

Read More

Debbie Daro is a COPD patient and State Captain from New Jersey. As an advocate she has participated in research initiatives, advocacy efforts with her local, state, and federal officials, and regularly spreads awareness about COPD through local health fairs. To learn more about the COPD Foundation State Captain program, click here!

What is your connection with COPD? What is your COPD story?

I was diagnosed by my primary care provider with COPD in 2013. I had been feeling sick for several years leading up the diagnosis but like many smokers I kept living in denial until one day I had no choice but to see a doctor. A primary care provider diagnosed me with a chest x-ray but didn’t talk to me about COPD or provide me with any educational materials. I was prescribed a couple of inhalers, told to quit smoking, and the appointment was over.

I continued to smoke for two more years until one day when I was rushed in to see a cardiologist. I knew at that point that I had run out of time and I had to start making lifestyle changes immediately. I quit smoking the day before my first nuclear stress test. A few weeks later I found a tobacco cessation support group. The counselor there expressed concerned that I had yet to see a pulmonologist or have a pulmonary function test. On the second visit she handed me a list of pulmonologists. I had to wait a bit for an appointment but when I finally saw a pulmonologist and had my first pulmonary function test I was diagnosed with early stage 4 COPD.

Read More

Pam DeNardo, Grassroots Advocacy Coordinator at the COPD Foundation, collaborates and works on the COPD State Advocacy Program. This grassroots initiative encourages everyone in the COPD Community-patients, caregivers, health care provider, and students- to come together to lobby on behalf of the 30 million Americans living with the disease. Pam talks about her experiences as a COPD patient, and how she came to be involved in advocacy, and The COPD Foundation.

I first learned of my COPD diagnosis in January of 1999 after a rather long bout of pneumonia. Back then, there was limited information on COPD, and I was told I had at least five good years to live. Well 18 years later I am still here. I was lucky in that it was around that time that COPD began to be known and advocacy had just begun. However, I did have to find a great deal of information myself. There was no COPD Foundation, just a few online groups who were great if you knew how to find them.

I was no different than any other newly diagnosed patient and went through all the stages you get when you are diagnosed with a disease that has no cure. In a Pulmonary Rehab class, I met a gentleman who was working on advocacy with the American Lung Association of Chicago. One day, he asked if I would go to Washington DC in his place on behalf of the Lung Association and the Tobacco Free Kids Group and speak on the dangers of smoking. I was in Illinois then and Senator Durbin was holding a subcommittee meeting about lawsuits formulating against the tobacco industry. Senator Durbin wanted someone from his state who also suffered from a disease caused from smoking. My first experience in speaking about COPD was both frightening and enlightening as I knew when that was over I could speak anywhere.

Read More

Meet Barry Wood, a longtime United States Tennis Association (USTA) NorCal tennis player. In 2006, Barry was diagnosed with chronic obstructive pulmonary disease (COPD) and in 2015 was told he would need supplemental oxygen for any strenuous activity. An avid tennis player, the diagnosis was life-changing. However with an optimistic outlook and a little ingenuity, Barry has been able to manage his COPD and stay in the game.

Read More

Justin Daniels is a seasoned marathon runner who has dedicated his journey to COPD awareness since 2013. He has met and spoken with hundreds of individuals across the United States and around the world to combat the stigma the remains with the disease.

“What started out as doing one marathon in the state of Indiana has now led me to 48 different states and working with great people living with COPD, their families, as well as people that have never heard of COPD. I have continued to make it my mission to be the voice for the people that can’t,” says Justin.

Justin runs and competes in honor of his father and the millions of individuals living with COPD worldwide. “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.”

In 2018, Justin is taking the next step in his running career and competing in his first Ironman competition. The race consists of a 2.4 mile swim, 112 mile bike and 26.2 mile run. He will attempt to qualify for the Ironman World Championship in Kona Hawaii in October 2018.

Read More

Carol Rubin is one of the newest members of the COPD Foundation’s State Advocacy Program. Learn more about life with COPD below.

Having grown up in the Bronx, New York, I was exposed to all the wonderful cultural entities that New York City has to offer. I’ve always loved the theater, museums, the NY Yankees. After I began my career with the NYC Department of Education as an educator, I moved to New Jersey, but very close to Manhattan to continue enjoying the life of a “Native New Yorker.”

Throughout the years, I became involved in volunteer work, fundraising, and traveling. After retiring as a principal, I began a second career, part-time as an adjunct professor at a local college, going to different schools to supervise student teachers and doing consulting work. During my visits to student teachers, I went to some old school buildings that had 5 to 6 floors with no elevators. It was during these visits that I experienced shortness of breath going up the stairs. Then, I suffered shortness of breath from walking uphill and doing activities that required lifting, bending, reaching (changing bedding). At first, I justified that I was out of shape, should lose weight (as so many others with COPD rationalize).

As the shortness of breath became more frequent, I went to a cardiologist who had me take a stress test and echocardiogram. The results were good; my heart was fine. This went on for another year. Once again I went through a stress test and echocardiogram and once again, the results were good. I never connected my symptoms with respiratory problems or my history of smoking because although I was a smoker for many years, I had stopped smoking 20 years ago.

Read More

Jimmy Slover is one of the newest members of the COPD Foundation's State Advocacy Program. He has shared his experience and insights into living with COPD. Follow his story below.

On February 25, 2010 I my life turned upside down and it would never be the same again.

It was 3:00 in the morning I wanted a cigarette. I can still remember lighting it up and trying to smoke it as I coughed my head off. At that particular moment I did not care about the coughing nor the fact that I couldn’t breathe worth a darn – I just wanted that cigarette. Because I wasn’t able to be strong and tell my brain NO, the following took place and changed my life forever.

I lived in an apartment complex at my brother’s house which had a unit upstairs and two single bedroom units downstairs. Thank god I lived in one of the bottom units. I can remember smoking that last cigarette and coughing and coughing and then it happened: I began hyperventilating. I remember calling my neighbor and screaming for him to come down and help me. I then dialed 911 and that was the last thing I remembered.

The following day, I contacted my family and told them they had better come say their “goodbyes” because I didn’t I was going to make it another day. Coincidentally, the day before this major event in my life happened: I saw my first pulmonologist. He looked me straight in the face and told me that it was going to take something drastic for me to quit smoking. I still can’t get over the fact this lung doctor just knew I was headed for disaster after just one office visit.

Read More

Has a movie ever motivated you to take a bold move in your own personal life? Nan O’Brien and David Webb are inspired to make a difference in the lives of others just as they are beginning to start their lives together. Nan and David are set to wed in the Canary Islands on Sunday, February 25, 2018 and will spend their honeymoon walking to raise funds for five worthy charities. The couple is preparing to walk 515 miles along the northern coast of Spain for their Honeymoon Walk for Charity.

They were inspired to start their philanthropic journey after watching the movie ‘The Way’. The film, starring Martin Sheen and written and directed by his son Emilio Estevez, tells the story of a man who decides to walk The Camino de Santiago, also known as The Way of Saint James, in honor of his late son who was not able to complete the journey. The couple chose five charities that hold personal meaning and connection to them. They both have loved ones who live with chronic obstructive pulmonary disease, and are therefore aware of the issues and challenges patients and caregivers undertake. With this realization in the forefront of their minds, they approached the COPD Foundation with the idea of being one of their five charities and we very graciously accepted.

Read More

“Every day is a new life to a wise man.” Hugh Traulsen of Virginia uses these words as a guiding principle. Nearly a decade ago, Hugh experienced a lung attack was told by a pulmonologist he only had six months to live. The shocking news made him re-evaluate his purpose and mission in life.

“When I was diagnosed I saw it as a blessing because I was forced to leave the workforce and I had to decide what I was going to do with my life,” says Hugh. From that moment on, Hugh committed himself to sharing his message of positivity and, “…changing the world from my dining room table.” So how does he achieve his goal? Hugh’s says he does so by encouraging individuals to find and share their own personal gifts.

“I am a senior citizen, I’m disabled, I’m in the veteran’s healthcare system, I’m pretty much homebound, but that does not limit me as long as I have a telephone. I don’t even own a computer. It’s again, not about me, but about me empowering you, to help you to find your own strengths and to bring them forth and in a way that will bless others.”

When asked about the personal tools he has used to manage COPD, Hugh told us that the first step was dropping fear. “People are afraid of stepping into the unknown, but that is where the breakthroughs happen. That’s where, when you let go and let God, the miracles happen.” He went on to explain that what one fears, one will attract, so it is important for everyone to focus on what they want to manifest in their lives.

Read More

Jamie Sullivan, the COPD Foundation’s Vice President of Public Policy and Outcomes, shares with us how she became involved with the organization, the two accomplishments she’s especially proud of, and how you can help make COPD the national health priority it deserves to be.

When Jamie began pursuing her Master’s in Public Health degree, the COPD Foundation (COPDF) had only been in existence for about four years. There was a field experience requirement as part of his program and Jamie was “lucky to have been able to move to Washington, D.C., to complete my field experience at a time when COPDF received its first advocacy grants.”

In January 2010, Jamie joined the Foundation full-time. Her role was to “grow Operation 435, the grassroots advocacy program, and work with states to develop COPD action plans.”

Thinking she didn’t really have a personal connection to this disease, “working for John Walsh and working with the COPD community made it seem personal.”

As it turned out, Jamie learned she did indeed have a personal connection. “I found out during prenatal testing that I was an Alpha-1 carrier and therefore have a slightly increased risk of developing lung disease down the road.” During and after college, incidentally, Jamie worked for the Alpha-1 Foundation.

Before joining COPDF, Jamie says she was “like most of the public and had not really heard of COPD or for that matter Alpha-1. As I got more involved, more and more friends and family chimed in with the now common ‘my Grandma had COPD’ or ‘my Dad had Alpha-1’.”

Read More