I had the opportunity earlier this month to represent the CFLF at the Cystic Fibrosis Research Inc. (CFRI) 28th National Cystic Fibrosis Education Conference Partners in Progress in Redwood City, CA. It was a great experience and informative conference. I made lots of connections but was especially pleased to meet a CFLF grant recipient in person. I met Anna Modlin who is now 34 years old. She received a double lung transplant in 2010.

In 2013, CFLF gave her a Recreation Grant to assist with her swimming at the World Transplant Games in South Africa.This helped make her dream come true, and winning five medals surely made her happier. Anna is a great model of the CFLF mission to help CF patients Live Stronger and Longer through its Recreation Grant program.

The Conference also had an educational session presented by Scott Russell, Lead Physical Therapist at Keck Hospital of the University of Southern California (USC) titled Fully Alive: Physical Activity, Exercise & Yoga. He shared his treatment philosophy that encourages CF patients to discover their optimal health and fitness through exercise-based intervention. He stated that overall fitness is not defined by pulmonary function results. It was great to learn that medical practitioners and doctors are embracing the benefits of exercise along with other treatments for CF. 

This was good feedback for me as I have exercised all my life, and was diagnosed with CF at 64 years old. In the year of diagnosis I was swimming laps, walking regularly, and playing golf. But it was getting more difficult for me to bounce back from bouts of pneumonia, deal with chronic bronchiectasis and reduced lung capacity. My active lifestyle is what helped me live strong even without good treatment. Currently my FEV1 is 46% but I am still active and around to write for this blog.

Fortunately now I have a great doctor and access to the latest treatments for CF. This has been an amazing year as I started Kalydeco (ivacaftor) in February and can’t believe the improvement in my health in the past six months; I feel stronger and healthier than when I was in my fifties. I want to say it is like having a new body but it is more like a different body as the body is still old, heading toward its eighth decade. I hardly cough at all and I can walk the hills and swim the laps at a quicker pace and not be short of breath.

I was ready for a new fitness challenge for this different body! I recently started mat Pilates in a group class at my fitness club. Well I thought I was in good shape. . . guess again! This hurts. I mentioned my new exercise endeavor to my physical therapist at the CF Clinic. She said I should stick with it as it could improve lung function/capacity, as it strengthens and tones core muscles and improves posture. I hadn’t even thought of some of these benefits. 

Joseph Pilates who had asthma and rickets as a child was determined to strengthen his sickly body. He believed in order to “achieve happiness it is imperative to gain mastery of your body.” There are similarities to yoga with breathing techniques and connecting mind and body. I did yoga often back in the 1970’s and I can say Pilates is much harder. I am trying to stay with it even though it hurts and I am starting to see good results.

The strengthening of the core muscles is actually improving my golf game. I can drive the ball further when I remember to use what I call the Pilates stance (using the core center energy) when setting up to take a swing at the golf ball. So if Pilates can improve my golf game – I am sure other improvements will follow. It will be interesting to see if FEV improves at my next clinic appointment. In any case I am happier with the different body – thanks to Vertex and Pilates!