I live in Florida and have COPD. I'm a member of the ALA's COPD Patient Advisory Group and have been involved with the American Lung Association for nearly 25 years as a volunteer, local leadership board member, patient advocate, and walk participant.
I was diagnosed with COPD officially in 2001, but had most likely been living with it for 10 years prior. When I first received my diagnosis I was very upset as I'd quit smoking but had no idea that the effects would be irreversible. My symptoms included extreme shortness of breath and not being able to walk up the stairs and do housework. At that time, I was placed on 24/7 oxygen and was given inhalers but did not receive any education. But after losing weight and participating in pulmonary rehabilitation, I only needed oxygen when exerting myself and at altitude.
I eventually found and participated in a couple of online support groups and was later referred to a pulmonary rehabilitation (PR) program. Following my PR experience, I joined a Better Breathers Club and continued to learn from patients, caregivers and clinicians.
Of the many hats I have worn as an American Lung Association volunteer, I was really excited to recently serve as one of three patient investigators on an Airways Clinical Research Centers (ACRC) Network grant. The grant was the first of its kind to be funded through the ACRC that included patient investigators. I found it to be an educational experience and I look forward to more opportunities to collaborate with clinicians and researchers and share the patient perspective.
I'm retired from county government and enjoy reading and spending time with my 3 grandchildren and 2 great grandchildren. I volunteer because, as Dr. Seuss’ The Lorax said, “Unless someone like you cares a whole awful lot, nothing is going to get better. It’s not.”
