In November 2011, the COPD Foundation asked readers to select a 2011 COPD Community Champion, an individual who has made outstanding contributions to COPD awareness, advocacy and volunteerism. After tallying all of the votes, our 2011 COPD Community Champion emerged: Nick Jones!
A well-known figure in the COPD community, Jones leads a community support group called The Airheads in The Villages, Florida. Jones is a compassionate teacher who helps others with his unwavering positive attitude. In response to this outpouring of support, the COPD Foundation asked Jones to share some of his thoughts regarding COPD, support groups and what made 2011 memorable.
What is your advice for other COPD patients?
Educate yourself. Have a well-qualified pulmonologist who will spend time answering your questions. Get questions for your doctor from the internet (COPD Foundation, EFFORTS, and Health Central/COPD Connection). The more you know about the disease, the better you can cope with its “challenges.” Stay active. The more you do, the more you will be able to do. Exercise. Well-toned muscle requires less oxygen, resulting in being short of breath less often. Stay Positive. Learn to laugh at yourself.
How important are support groups for the COPD community? Would you recommend people join them?
They are very important. You are not alone! By joining a support group you can relate to those with similar “challenges” and learn much from them.
Nick and Jan
Take your spouse with you. When you both get the same information at the same time, it can eliminate the “You just don’t understand” syndrome.
How hard is it to create a support group?
It can depend on several factors. It can be difficult in rural areas where folks live miles apart. Demographics play a role. Folks in retirement communities will have more COPD patients in a concentrated area. Community “buy-in” can help tremendously, health organizations, hospital, church, local newspaper, DME’s, and hospice, to name a few. It is imperative that the group has a positive leader. We start off every meeting with my asking, “How are ya doin’ today, Airheads?” In unison, they all shout, “GREAT!” That is the only acceptable answer and it results in a room full of smiles. My wonderful wife and caregiver, Jan, and I have a disk that tells how we got started. You can order it here. nickandjan2@gmail.com
Many people refer to your positive and upbeat attitude. How do you keep your mood upbeat?
My mantra is, “The only true handicap is a bad attitude.” Oh, I have my tough times like anyone else, but I know that “This, too, will pass.” I look forward to the next project and plan for it in my mind. It leaves no time to feel sorry for myself. I have challenges like everyone else, but refuse to “suffer.” I dislike seeing that word continuously used in conjunction with COPD. I do, however, have an advantage, as I have to set a good example for my other Airheads. I love each of them and they know it. Love makes the world go ‘round!
You are extremely educated about COPD. Any favorite resources that you use to get your information?
My pulmonologist is GREAT. He frequently emails me up-to-date articles. In addition to the earlier mentioned internet sources, I receive the COPD Digest, the Pulmonary Paper, question my oxygen provider, and get an endless number of questions and reports from individual Airheads. COPD Foundation’s Coalition Workshops are always helpful.
How many people are in the Airheads? What kind of people are in the Airheads? How often do you meet?
We have had over 700 patients pass through our portals in the past ten years as well as many caregivers. We welcome people who have any kind of breathing problems. Emphysema and chronic bronchitis outnumber all others by far, but we have folks with pulmonary fibrosis, Bronchiectasis, asthma, and lung cancer, to name a few. We have four meetings a month. Two are support group meetings where we have qualified speakers come to impart helpful information and two breathing and exercise classes that Jan and I teach. Some attend both meetings and classes, while others prefer one or the other. Attendance varies from as few as 25 to as many as 50. Our heaviest attendance is during the winter season when we have many “Snowbirds” here to enjoy our Florida weather. We still have some charter members attending after ten years. Many times, one will say that they don’t believe that they would have lived this long, were it not for the Airheads. Is there any wonder why I am so devoted to this group?
What was your best moment of 2011?
Jan and I have discussed this. She believes that it might have been surviving heart attack #3 while on a SeaPuffer cruise in March. Since I never disagree with my wife, I’ll have to go along with that. However, her agreeing to go on another cruise with me in March of 2012 has to rate right up there with having Billy Ray Cyrus select my entry in the DRIVE4COPD Song Writing Contest. Speaking to the International Convention for Respiratory care about the benefits of Transtracheal Oxygen Therapy with John Goodman and Dr. Michael Schwartz at the Tampa Convention Center was a thrill.
Why did you decide to get involved with COPD education?
In 1985, when I was first beginning to get sort of breath, my doctor didn’t feel that it was necessary to quit smoking. In 1996, with heart attack #1, the doctor mentioned that I had a lot of fibrosis in my lungs. When I asked what that meant he said, “We are more concerned about your heart. Don’t worry about it.” In 1996, with heart attack #2, I was told that my lungs looked pretty bad and that I should get them checked out. That is when I was first diagnosed with COPD and put forth a concerted effort to learn more about COPD. In 2001, when we started the Airheads is when Jan and I learned that we had valuable information that could be shared with others. We did so through our meetings, breathing & exercise classes, and a course that we taught for four years at The Villages Lifelong Learning College entitled, “Living with COPD.”
Any tips or advice for other COPD patients?
Take your spouse with you to support group meetings. When you both get the same information at the same time, it can eliminate the “You just don’t understand” syndrome. Always write down questions for your pulmonologist. Take your spouse to the doctor’s as well. Spouses are very honest with the doctor. Stay positive, always answering “GREAT!” when someone asks how you are doing.
What would you want the COPD Community to know about you?
That I love them all. I’d also like everyone to know how strongly I believe in the benefits of transtracheal oxygen therapy. This procedure is the best-kept secret in our modern medical community. In fact, if I might editorialize, I feel that the woeful lack of knowledge and misconceptions of well-meaning doctors is unfair to those on oxygen 24 hours a day, who could derive a much higher level of comfort and enjoy a more active lifestyle.
Do you have any advice to other community members interested in joining or creating a support group?
If you can, join one. If you don’t have one and it is practical, create one. If neither option is possible, then join an on-line support group such as EFFORTS, where you can read emails that cover every spectrum of COPD and will gladly answer any questions that you may have.
What can we expect from you in 2012?
I start off the New Year wearing two new hats; as an EFFORTS Ambassador and a soon-to-be worker on the COPD Information Line. I will continue advocacy work and will go to the State Capitol to speak with legislators when called upon to do so. I will also continue to work with the Florida COPD Coalition by participating in the Community Workshops. Even with all of that, my Airheads come first.
