My name is Steve, I was born 6 and a half decades ago with wickedly severe asthma. I’ve been hospitalized over 150 times for this disease and was not expected to survive past my mid-forties. I’m 68 now!
Back in 2004 with my asthma worsening and limited treatment options available for me, rather than lay around feeling sorry for myself, I decided to take action. I searched out some of the best asthma doctors in the world at both UMPC and UCSF, became actively involved in asthma research, and I experimented with incorporating exercise, in the form of walking, into my daily treatment regime. In doing so, I not only improved my own health, but I changed the global narrative on physical fitness and chronic lung disease management.
Within a period of just 8 years, lots of hard work, discipline and sheer determination, I completed 21 long-distance foot races. All while being chronically short of breath, and all with a baseline lung function about a 1/3 of normal.
But before I continue with the back story, let me clarify a couple of things.
First, I didn’t run any of these marathons. In fact, I can’t run at all…I just don’t have the lung capacity to do so. But what I found is that I could slowly condition myself to walk at a moderate pace for increasingly longer periods of time without getting dangerously short of breath or making myself sick. Of course, I can’t walk as fast as a healthy runner can run, but I still cover the same race distance and it only takes me about twice as long to do it.
Secondly, I’m neither a natural born athlete, nor a freak of nature that can somehow walk marathons without lungs. Actually, I’ve never been athletically involved in anything. The reason I walk, is because I have to if I want to continue to live well with this disease. I walk because it makes me feel good about myself, like I can do what healthy people can do. No doubt that endurance walking presents some real challenges for someone who has a disease that severely affects their ability to breath, but Im living proof that it can be done if one so desires it.
You might be thinking, its only “walking”, what’s the big deal. Well, covering long distances in a short amount of time is much harder than it looks, especially when you have a disease that severely affects your ability to breath. Truth is, Ive worked extraordinarily hard at conditioning myself and building up the endurance needed to reach the goal of completing a marathon. I’ve learned over the years not to let my breathlessness make me overly anxious or dictate what I can or cannot do, physically or mentally. I know the risks involved in doing strenuous exercise, I take precautions, I learn what works for me, and then I try my best to adapt. The only advantage that I might have over others who have breathing problems, is that I’ve had mine since early childhood. In short, I walk and exercise, because I need to if I want to keep living.
That said, my walking story and the birth of this blog begins in Sept of 2004, when my asthma got so bad that I was forced to take early retirement from my career as a Respiratory Therapist.At the age of 49, physically disabled and now jobless, I became super depressed, constantly sick and totally out of shape. Then one day it occurred to me, people with traditional COPD are encouraged to attend pulmonary rehab classes and exercise to slow their disease progression and improve the quality of their lives, so why not people with severe asthma? The diseases may have different causes, but they share many similarities…mainly debilitating breathlessness.
With that in mind, and plenty of time on my hands, I came up with an aerobic exercise program for myself, that would hopefully add some structure to my days, help me manage the viscous dyspnea cycle, maintain what little lung function I still had left, and perhaps beat the odds by living longer and happier than science and medicine says I’m supposed to.
At first, I tried swimming and slow jogging, but those activities left me severely winded. In the end I chose good old fashioned walking. Little did I know what a profound affect this would have on my life. When I first started walking for fitness I was in such bad shape I could barely go a few blocks without suffocating; and on many days I was too short of breath to walk at all. Despite the concerns and doubts of some, I kept pushing myself to go a little farther each time. I even took up racewalking lessons to learn the science of walking and to improve my speed and technique.
A year later on 7-31-2005, I walked 13.1 miles in under 3 hours, successfully completing my first half marathon. Then just a little over a year after that on 10-1-2006, just 2 weeks after an asthma hospitalization and an FEV1 of 36%, I did what others said was not possible….. I completed a 26.2-mile walk and finished the Portland Marathon! Since then, I’ve gone on to finish a dozen other races around the world, including the Rome marathon in Italy(twice).
My Happiest walking moment happened on April 20th 2009, when walked my way into the record books by becoming the first person with documented severe refractory asthma allowed to enter the mobility impaired division of the Boston marathon. I went on to finish the 2010 and 2011 Boston Marathons as well, finishing each race appx 12 minutes faster than the previous.
Alas, while I still consider myself a Badass-matic, a lifetime of near constant asthma exacerbations and all the medications used to treat them, has taken quite a toll. Since completing my last full marathon in the fall of 2014, I’ve had to set less lofty fitness goals for myself. My lungs are so damaged now that I’m short of breath all the time, and the slightest trigger can throw me over the edge. I don’t see any more full marathons in my future, but I still walk everyday and my message is still relevant…If you have lung disease, you need to stay active. As counter-intuitive as it might sound, you need to exercise, even when you have a disease that affects your breathing. Fitness walking hasn’t cured my asthma, but it’s certainly made me a stronger person and I believe it’s the main reason I’m still around to write about it.
While it’s true that I suffer tremendously from this disease, I refuse to be a prisoner to it.
As I see it, you have two choices when it comes to chronic breathing problems, you push on with life despite the difficulties and find ways to adapt, or you let the disease gradually consume you and make your life miserable. Plain and simple.
If you have asthma, please consider becoming a volunteer subject for SARP or some other Asthma research study. It’s so important.