This post was written by: Amanda Atkinson, MSN, RN.

We live in a changing world where it seems like the pressures around us grow every day. Mental wellness has never been more important. Mental well-being is not just trendy or a buzzword, it is an important part of our overall health and happiness. Just as we make the health of our body a priority, we must also make our mental wellness a priority. Some people think that these two parts of us are separate. In reality, they are tightly connected.

Dr. Kiran Palande and I discuss some common questions about how your mental health and physical health are connected.

Dr. Palande is a passionate Cardiopulmonary Physiotherapist from Mumbai, India. She received a Master of Physiotherapy in Cardiorespiratory Sciences from NMIMS University. In her current role, she especially enjoys connecting with her patients through pulmonary rehab (an exercise program for those with lung conditions) and is a member of the COPD Foundation's State Captain program. Dr. Palande believes that pulmonary rehab is an essential aspect of care for people with lung conditions.

Dr. Palande, can you talk to us about how a person's mental health can affect their physical health?

Physical and emotional health are connected.

Maintaining good physical health improves lung function while supporting good mental health reduces stress and worry. Both of these can worsen a lung condition. Mental and physical health have an unbreakable connection.

Regular exercise, a good diet, and pulmonary rehab can help to improve lung function. Meanwhile, controlling stress and anxiety with relaxation techniques helps both mental and lung health. For an all-inclusive approach, both mental and physical health must be a focus.

What are some ways that a person can overcome limits and shame surrounding talking about mental wellness?

When a patient is first diagnosed with a lung condition, it is common for them to be worried. Accepting a diagnosis can be difficult. It is important to get educated about common thoughts and feelings related to having a lung condition. This can make it easier for someone to open up about how they are feeling.

It is important to remember that not all days are the same. We all have good days and bad days that we deal with. Every day is different for everyone. Your experiences and feelings are valid, and it is okay to talk about them. In fact, it is an important step to healing.

I have noticed that many people are still hesitant to talk about their emotions. Joining a support group for people with similar lung conditions can bring a sense of connection and understanding. This can often help lessen concerns about talking about your mental wellness.

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This article was written by Jessica Burke

Everyone has something they are passionate about – whether it’s running, baking, gardening, music, fashion, or volunteer work to support a cause. These COPD Foundation community members have found some incredible ways to combine their unique interests with their passion for helping people with chronic lung diseases. Learn about these COPD Foundation advocates and their Do It Yourself (DIY) fundraisers, what they learned, and how you can host a meaningful and successful fundraising event – and have a blast doing it!

Russell Winwood, a COPD Foundation advocate, shared that a stroke followed by a stage 4 COPD diagnosis at the age of 45 led him to make a powerful choice: to take charge of his lung health and live his life as a COPD advocate.

“I decided I didn’t want to just go lay in a corner and let the disease take over my life,” Russell said. “I wanted to still enjoy a quality of life.” That’s when he began participating in Ironman competitions, then marathons. With only 30% lung capacity, Russell has since completed the New York marathon, the Boston marathon, the Gold Coast marathon, and the London marathon – all to encourage living well with COPD, and to honor the millions of people it impacts, while raising money for chronic lung disease research, education, and treatment.

In October 2022, Russell, who is widely known as “The COPD Athlete,” completed the Chicago marathon as a DIY fundraiser for the COPD Foundation. The marathon was a huge physical and logistical undertaking for him, but he emphasized it was worth the effort to support the Foundation, meet other COPD patients, and build awareness and community.

“The COPD Foundation has the biggest network of patients, so it’s a really big and positive community,” he said. “The best part of the event is that I get to meet people through the fundraising, and every race I’ve run I’ve gotten to connect with other patients on the course.” Russell shared that anyone who believes strongly in their cause and commits to relentlessly promoting their fundraiser can have a successful and meaningful event.

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This article was written by Kristen Willard, MS

I’ll never forget it. Even though 25 years has passed, I remember the moment vividly.

"Don’s cousin has that disease Kristen’s father has," my grandfather said nonchalantly, as relatives talked in a seafoam-green living room.

The disease my father has? What was he talking about? I wasn’t sure I wanted to know. I asked anyway. "What does my dad have?"

My grandfather continued without hesitation. "Emphysema," he said flatly. I don’t remember much after that.

My world was changed with a verbal gut punch, a statement that I assumed meant the worst. Twenty years earlier, my father held a tiny me as he stood at his mother’s memorial service. She had passed in 1977 from emphysema. That was the year that Elvis died and Roots debuted on television. COPD was most certainly not a household name.

Twenty years later, when my father was diagnosed, we still didn’t call it COPD. We didn’t have a Foundation to support us or search engines that brought medical information to our fingertips. As was the case with many conditions, the world did not necessarily want to discuss them. No one jumped to pull up a chair to the kitchen table and talk through a loved one being diagnosed, what doctors had told them about prognosis, what words like chronic and hyperinflation meant. So we navigated on our own and heard many things second hand after completed doctors’ visits. I’m glad so much of this is changing.

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

Recently, the COPD Foundation’s Stephanie Williams spoke with Made Pramana, an individual from Indonesia who has been diagnosed with bronchiectasis. Read on to learn more about Pramana, his life in Indonesia, and how he helps people learn more about lung diseases.

If you could describe where you live in 100 words or less, how would you describe it? What is an average day like?

I live in Denpasar, which is the capital city of the island of Bali, Indonesia. Denpasar is a busy place, with lots of street vendors. People usually drive motorcycles or cars to commute. There is also public transportation, such as buses or taxis. There are some public places such as beaches, rice fields, parks, and a mangrove forest. Denpasar also has traditional markets, amusement parks, museum, hotels and pools. The housing in Denpasar is quite crowded since many people choose to live and work here.

People usually start the day by buying groceries at 5.30 AM in the morning. If they don’t have time to prepare a meal, the street vendors also sell breakfast. People also can buy foods for breakfast from the street vendor when they don’t have time to cook. Students used to go to school at 7 AM and many people go to work at 7-8 AM. For those that have time, they use the morning for exercise in the park, including yoga, walking, or jogging.

How are things different for you and your community now compared to before COVID?

The schools are still closed because of the COVID-19 pandemic and students have to learn online. There are fewer tourists in Bali since the start of the pandemic. Most people are still going to work; some wear masks and others do not. The same is true for recreational activities. I was at the beach the other day and saw many people swimming, biking, running, and walking. Many people were not wearing masks.

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

I hate to admit this, but I can be cynical—especially when it comes to therapies and treatments for the patients I care about. When I was the Director of Respiratory Therapy in the acute care (hospital) setting, there would be the occasional visit from a salesperson who would try to convince me that the product they were selling was the latest and greatest thing to help me care for my patients. Sometimes the product would be a good addition to our collection of tools we used, but sometimes it was all show and no substance.

I share this with you is because I want you to know how strongly I feel about the Harmonicas for Health program. It truly does rank in my top five of products and programs that I believe can actually improve the quality of life of the participants.

When we started this program five years ago, I had no idea how much it would help people living with breathing problems. We knew it was going to be a good program, but I didn’t know how much people would love it or how much it would mean to them. Boy, was I surprised!

There are many reasons that people give for joining Harmonicas for Health. I recently spoke with Doug Martin, State Captain, and a long-time H4H participant and instructor about his experience with the program and how it helped him.

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

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

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

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

What tests did the doctors do to confirm your diagnosis?

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

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

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

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This article was written by Christina Kononenko, BA, MSEd and Janice Cotton, State Captain Illinois

The COPD Foundation recently had a virtual chat with Janice Cotton, State Captain for Illinois for the last 10 years and IMPACT 2020 participant/advocate. Read on to learn more about Jan and her advocacy work.

Tell us about yourself.

I am an individual living with COPD, diagnosed in 2000. The impact of my diagnosis was devastating, to say the least.

What prompted you to advocate in the first place, and what continues to drive you to this day?

Listening to other people living with COPD who are in pain because of not getting answers to questions about their condition, their medicines, Medicare, and disability prompted me to start working for others. I had been through the process. Although I was still learning and searching for answers, I could certainly share what I had learned.

What types of advocacy work have you done to date?

I have held health fairs, spoken at pharmaceutical conferences and worked on panels giving the patient perspective on what our needs are and how clinicians can best help us.

Why did you decide to participate in IMPACT 2020?

Having worked on Lobby Day on Capitol Hill, I have knowledge of the process and what it takes to get our voices heard.

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This article was written by Bret Denning, JD and Carol Rubin, MEd, MS.

The COPD Foundation recently had a virtual chat with Carol Rubin, New Jersey State Captain and IMPACT 2020 participant/advocate. Read on to learn more about Carol and her advocacy work.

How long ago were you diagnosed with COPD?

I was diagnosed with emphysema in 2014. Like so many others, I had COPD several years before I was diagnosed. I attributed my shortness of breath to being out of shape, needing more exercise and did not connect it to a lung disease until I finally saw a pulmonologist.

How long have you been a State Captain?

I became a State Captain for New Jersey a year ago. Prior to that, for two years I participated in the Foundation’s Advocacy Ambassador program, which provided participants with training, mentoring and important skills in grassroots advocacy.

What motivates you to advocate for the COPD community?

Raising public awareness of all aspects of COPD is my cause. Although COPD is the fourth leading cause of death, so many people are not familiar with it; they do not know what it is like living with COPD. Funding is critical to seeking a cure. I want to use my voice and my personal story to advocate and make an IMPACT!

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This article was written by Bret Denning, JD.

What does it mean to be an advocate? That’s an interesting question that can have several different answers. For some, it means working to help others through education and outreach. Advocacy is not something out of reach – it simply means to make people aware. The COPD Foundation wants to help you recognize that as someone living with COPD, you have a voice that needs to be heard in whatever way is most comfortable for you.

In this video, Become a COPD Advocate and Make and IMPACT!, Stephanie Williams, Senior Director of Community Education Programs at the COPD Foundation, had the opportunity to speak with John Linnell, a state captain from Wisconsin. As a state captain, John is one of our most passionate advocates and is always willing to lend his voice in any efforts to help the COPD community. He believes that it is critical for the patient voice to always be heard. John wanted to share his story of how he became a COPD advocate and what it means to him. After being forced to leave the workforce due to COPD, John realized he had two options: sit home and "be that old man with a hose in your nose" or get involved and help educate others through their journey. He knew how challenging his own journey was and helping others overcome barriers like the ones he faced was an enlightening experience for him. It was a desire to speak on behalf of others that brought him together with the COPD Foundation and our State Captains program. John wanted people to know that even if there is no cure for COPD right now, the disease is not a death sentence and that there is so much that can be done. How anyone deals with their COPD is completely up to them. John rejected the "woe is me" approach and decided to not only live with it but work every day to help others. To him, that is the point of advocacy—let your voice be heard!

As a COPD advocate, John wants others to become involved! He emphasized that there is not a "one size fits all" approach to advocacy and that people can find what makes them the most comfortable, from handing out literature at a health fair or participating in a conference to speaking with pharmaceutical representatives or members of Congress. John gave an example of a friend who was not comfortable with public speaking but was a powerful advocate through social media. The question thus becomes, how does one become a powerful advocate? This is where IMPACT comes in.

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This article was written by Jamie Sullivan, MPH

Hi Friends,

Earlier today I sent the below message to our State Captain Network, but I wanted to share it with you as well. I consider all of you as part of our extended family of advocates and champions for the community and I am so grateful for all that you do to support each other and for how you support the COPD Foundation team. It is very bittersweet to post this but rest assured it is not goodbye for good, I am an honorary member of this community for life and will always carry your voices forward in my work.

Dear State Captains,

Sixteen years ago I was a college student in Miami staring at a job board I saw on a walk across campus when my eye caught a listing for an off-campus work-study position for a place called the Alpha-1 Foundation. The prospect of working somewhere other than a campus office filing and answering calls was thrilling but little did I know this chance walk by the job board would shape the rest of my life in the way that it has.

Over the next decade, I was privileged to learn from the best. John Walsh, the founder of both the Alpha-1 and COPD Foundations, was one of a kind for so many reasons, including his ability to build organizations, innovative programs, and consensus where people thought it was impossible. He was also a one of a kind boss. He believed in his team and this act of having more confidence in me than I probably deserved at such a young age, taught me I could not only find creative ways to make John’s ideas a reality, but I could seek out and form ideas on my own. His commitment to the notion that if you have a role in the problem you are trying to solve, you have a role in the solution, shaped my approach to building impactful collaborations and above all, his firm belief in the role that patients and caregivers play in ALL conversations, scientific, clinical, policy and more, will ground all future work I do.

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This article was written by Bret Denning, JD.

Diane L. Gregg is an individual living with NTM lung disease. She is a retired clinical social worker who spent her career working in various health care settings where she worked as a clinician and Director of Social Work and Human Services. Diane is currently working to complete a certificate program to become a mindfulness meditation teacher. She lives in the Chicago area with her two kitties and enjoys being a grandmother.

Thank you for talking with us today, Diane. Can you tell us more about your initial NTM lung disease symptoms?

I was diagnosed with NTM lung disease in early 2014. I began having symptoms a few months earlier. Initially I just felt extremely fatigued. I can't emphasize that enough. I had a hard time even making it home from work without falling asleep. This was very unusual for me because I'm a high energy person.

About six weeks after the fatigue started, I began coughing. It was an intermittent cough. I didn’t think too much about it until my friends and family began remarking, "Oh, you’ve been coughing a lot and it’s a really deep cough." Hearing that from them, and also getting pneumonia a few months later, made me decide to follow up with my doctor.

What tests did the doctors do to diagnose your NTM lung disease?

The first test the pulmonologist ordered was a chest X-ray. That test confirmed that I had pneumonia. I was told that the air sacs in my lungs were enlarged in what they called a “tree in bud” pattern, which indicated NTM lung disease.

I put off having a bronchoscopy for about six months because I had had a bad experience with a bronchoscopy many years before in another city. It just was scary to me. But I finally had a bronchoscopy, and that confirmed my diagnosis of NTM lung disease.

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This article was written by Kandy Blankartz, a COPD Foundation State Captain for the State of South Dakota. She wanted to share with the community about how COVID-19 has impacted her small town in rural South Dakota.

Hi, I am Kandy Blankartz, State Captain of South Dakota. I wanted to give you a little glimpse of how things are going here since I do live in a rural area of North Central SD. The town I live in is very small with a population of 3,465 people and am about 100 miles away from the nearest big city.

This COVID virus outbreak is very scary for us all but with those of us with underlining conditions such as lung disease, heart problems, diabetes, and cancer make it very hard to deal with. We have to take all the precautions and more for us to prevent this virus. I keep up on the news about this COVID virus for South Dakota every day especially for my county. We had 5 cases all in one family here in town. We all know them well. They have recovered -every one of them. So far, no other outbreak in this county, which is Walworth County. There are 2 close counties with no virus and one county which has 1 case reported and they have recovered. Hope we can keep it this way. It is a big worry for all of us in this rural community.

Life here has really changed. The officials here have closed inside dining places and restaurants only have drive-up. There was no prom for the high school. There still trying to figure out how to have graduation in May. The school kids are all doing schoolwork at home via the schoolteachers. This is really putting a strain on all of the parents and teachers. My daughter had to video chat a niece to help her with schoolwork. The grocery stores and dollar stores are open, but tape is placed on floor to keep everyone 6 ft apart. We have social distancing here with keeping 6 ft apart, and only 10 in a crowd, but I see no one in crowds. Now more people are wearing masks in public. My daughter is attempting to make some for family members. For me it’s very hard to wear a mask and breathe.

I think our medical clinic here is prepared and ready as best they can for this. I am worried the most about a big pandemic here. I think we only have a 25-bed hospital. You are to call before coming if you think you have the COVID virus. They come out and test you at your car. We got the new rapid testing machine from the state this last week.

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