This presentation was made by EFFORTS member Polly Taylor on May 22, 2012 in the AM session of the 2012 American Thoracic Society Meeting.
(Polly ATS 5/22 a.m. Carolyn Rochester, Rehab)
Good morning. My name is Polly Taylor and Iíll be 83 years old next week. I want to thank you for inviting me here to talk about what Pulmonary Rehab has meant to me and for attending my presentation. Thanks especially because one of the ways that I get a handle on this disease is by exploring the huge amount of information that I need in order to keep a decent quality of life. I was diagnosed with severe COPD 17 years ago and I am still walking and talking (although not both at once) so I am a COPD success story. Specifically, in addition to medications, I am a Rehab, keep-it-up hab success story.
I had severe allergic asthma from early childhood. It was reasonably controlled through my 40s and 50s. Then in my early 60s I had several bouts of whatever was going around and when they cleared up I found myself short of breath with very little exertion. I had neither money nor insurance so I had minimal medical advice. I was x-rayed, told I did not have emphysema and given a diagnosis of exercise-induced asthma and an albuterol inhaler. So I stopped exercising. I lived in what is considered the flat part of San Francisco but before long, while I could walk three blocks down to the corner store, I couldnít walk back and I couldnít lug my laundry without gasping and looking for the nearest place to sit.
At 65 Social Security and Medicare kicked in and I made an appointment with the pulmonologist I still see. He made the diagnosis and told me COPD was progressive, irreversible, incurable, but with treatment options. I immediately asked about exercise. He said, ďDo as much as you canĒ and I did.
I never had the insurance for a formal rehab program but with the help of the doctor and his staff, I cobbled one together. I enrolled in a research study that included much of the standard rehab education and coaching, I learned about medications, and I joined online support and information networks. After I had a heart attack I had cardiac rehab in a department that also has a pulmonary program and could tailor it for me. I learned first-hand about exacerbations and the exasperation that follows when all the conditioning I had achieved vanished into thin air. So I learned to persist, to be careful about infection, to pace myself, and much more. I havenít had an ER level exacerbation in ten years now.
I succeeded without formal rehab, but keep in mind that I came to COPD with a lot of privilege. I had more general liberal arts education than Iíd ever had any need for before I hit this challenge. I had coped with shortness of breath all my life and was used to getting through it. Being disabled was not a shock to me. I even had some helpful computer skills from the work Iíd been doing. Finally: I was part of the San Francisco Bay Area old lesbian community that had been consciously working for decades on developing mutual support. We were used to managing our own lives and taking care of ourselves and each other.
I mention my privilege and resources, not because Iím unique, but neither am I typical. While for anyone COPD is a devastating diagnosis, for many it can be overwhelming. As patients we have to make up our minds, gather the information and support, and to do the work of living with COPD. If we canít, we will just be dying of COPD.
And there is where you all come in. Thereís a lot that you all do that leads us to better choices. To me thatís what pulmonary rehab means: information, support, and exercise coaching so weíll make better choices and reinforcement so weíll keep up with managing our disease.
Iím here, and happy with my life, because of these components: medications, exercise, information, support, and reinforcement along the way. I want to leave you with my view that providing those elements for all COPD patients is a tremendous challenge that Iíd like to see you continuing to meet.
Again, thank you for asking me!
Email and phone number omitted. If you wish to contact Polly, send an email to firstname.lastname@example.org.