"A Whiter Shade of Pale"
COPD
(Chronic Obstructive Pulmonary Disease)
I tried to quit smoking so many times without success that I finally gave up trying - making a promise to myself that with the first symptom of any problems, I would quit. Of course, I never believed that day would come. When it did, I was shocked to discover that typically by the time you have your first symptom of breathing problems, your lung function is already 50-75% gone! In all the campaigns about the dangers of cigarette smoking and the Surgeon General's warnings, I never once heard that fact. It could be selective hearing or a faulty memory, it doesn't really matter now for me, but today it's the first thing I tell folks who ask about why I'm SOB (short of breath) all the time. And, yes, I did keep my promise to myself to quit smoking. That was in 2001. Since that time I've been actively involved with an online support group, where I learned that COPD is not a death sentence. There is much that we can do to feel better and improve our quality of life and thanks to my COPD family at COPD-Support.com, I'm learning how to do that - one day at a time. (See? Some things never change - once a 12-stepper, always a 12-stepper!) Here are links to some of the most helpful COPD places I've found:
The Family of COPD-Support programs was established to bring together people affected by COPD -- COPD patients, COPD caregivers, and medical personnel who have a particular interest in pulmonary medicine in general and COPD in particular -- providing a way for folks to share ideas and knowledge, support one another, and learn to live longer, better quality lives.
There is an enormous amount of information here. It definitely qualifies as the place to go to learn everything you want to know about COPD and MORE! Sadly, Olivija lost her battle with COPD on March 12, 2004. Her website is an incredible legacy left to all of us and is being maintained by her husband in her memory.
Living with COPD (aka Papapoo's )
Bill Powell is the first president of COPD-Support, Inc., taking over the reigns from founder Paul Marks. This is his personal website and is filled with personal experiences and tips, first-hand, from COPD patients. Bill passed away on April 16, 2001 and his website is being maintained as a tribute to him and to preserve the wealth of information it contains.
Portable Oxygen: A User's Perspective
This is the place to go to learn about using oxygen. Pete Wilson is a COPD patient and oxygen user who took it upon himself to become an expert about oxygen use and equipment. I really appreciate the information here because he has no vested interest in any oxygen products, so what we get is unbiased information rather than a "sales pitch."
Exercise is an important component of treatment for people who suffer from COPD. Still, most of us find it difficult to keep exercising regularly. Let's Get Fit is an independent exercise support group for people with COPD and their caregivers. Affiliated with COPD-Support, Let's Get Fit is intended to help its members stay motivated by participating in teams that serve as mutual support groups.
These are links to Home Pages of some COPD folks •
Love Your Lungs, Breathe For Life
Lori Palermo's website is in memory of her dad, Wayne and also in honor of the patients who struggle with lung disease every day of their life. In December 2003, her dad lost his 13 year battle to COPD/Emphysema; the debilitating disease in which her family knew nothing about. As a result of dad's death, she began researching and learning about Lung Disease; determined to help others, so they would not to go through the tremendous heartbreak that her family went through. Her website contains stories and articles designed to educate and support patients with lung disease along with their families and caregivers.
Karen's Space - Living with COPD
Karen Bastille's site is a continuing "work in progress" as she goes about the business of living her life while learning to live with COPD. She includes Carolyn-MI's collection of prime COPD messages frequently posted for newcomers. She keeps adding personal stories from people with COPD and good COPD web sites. Also, check out her Mystic Journey journal, a recounting of her weekend away.
EFFORTS - Emphysema Foundation For Our Right To Survive EFFORTS is a COPD Support group that is involved in politics and COPD Advocacy. It's a great place to roll up your shirtsleeves and get to work on important and worthwhile issues concerning COPD.
This is another great COPD Support group with good information and group participation. It's primary purpose is to provide a resource for all through interactive support and education.
A great resource for information and education, as well as up-to-the-minute news concerning COPD. This is also a good place to find out about local resources across the USA.
This is a good resource for medical information and news.
National Jewish Medical and Research Center NJM is the top lung research and treatment facility in the USA. Their website is a wealth of the latest information with a heavy emphasis on patient education material (both online and via snail mail.)
This site is specifically about two interstitial lung diseases, IPF (Idiopathic Pulmonary Fibrosis) and Sarcoidosis, but their Resources section and Compilation of Pulmonary Definitions are excellent for all lung diseases.
Second Wind Lung Transplant Association, Inc. was formed on April 17, 1995 by a small group of people that wanted to supply information about lung transplantation to others. In 1995 lung transplantation was truly the beginning of a new horizon in medical technology. The slogan "Support through Service" was adopted and their website is a means of providing that support.
Kay's Collection of COPD Links
Please Listen to Me - Katlyn's Journal
Wilbur's Beginning Harmonica Info