Small Changes Can Lead to Big Results: How One PXEer Fit Getting Healthy into a Tight Schedule


August 13, 2012
By Rachel Koren
with Karolina Pecorino
This article first appeared in the August 2012 PXE International eNewsletter

The need to eat right and exercise is always in the backs of our minds, but there are so many other things to worry about that it can be hard to make those big changes that we know are good for us. And besides, who wants to give up fried chicken anyway? But getting healthy doesn’t have to start with running a marathon. The smallest changes can start you off. By letting that momentum slowly build, the results may come more quickly than you expect.



PXE International knows that the best way to avoid the most serious symptoms of PXE is to lead a healthy lifestyle with plenty of exercise and a nutritious diet. Beginning in February 2010, we have sponsored monthly health challenges designed to inspire those with PXE to start making positive changes for themselves. A video posted to the PXE International website explains the individual challenge and community challenge for each month.


The individual challenges encourage PXEers to set nutrition and exercise goals for themselves designed to incorporate health into a busy lifestyle. The community goals encourage participants to take these challenges and encourage their friends and families to join them on the journey to getting healthy. The benefits of a healthy lifestyle extend beyond the PXE community, and the more you can develop a supportive community, the better. PXE International is happy to sponsor these challenges and to provide a virtual support group to all participants, but the initial spark of inspiration has to come from you.


Karolina Perino’s inspiration came after her first trip to the cardiologist. “It was sobering to hear how grave the cardiovascular risks are in people with PXE. I have watched people close to me succumb to illnesses that were in part preventable, or manageable, with self-control. I do not want that to happen to me.” Karolina found her motivation, but finding the time to make it happen was also a challenge in itself.

"It can start with the smallest of changes. A year and a half ago I started by not using cream in my coffee. The same with exercise. I started with just 15 minutes of the elliptical-today I can run half a mile."


It can start with the smallest of changes. She says, “A year and a half ago I started by not using cream in my coffee. The same with exercise-I started with just 15 minutes of the elliptical-today I can run half a mile without coughing out my insides.” The monthly health challenges are designed to break up the big challenge of getting healthy into smaller, more manageable pieces.


Start by increasing the number of steps you take each day. One of the first health videos of the year challenged every PXE’er to take 10,000 steps a day, a number that averages about five miles, and correlates with the surgeon general’s recommendation for a healthy lifestyle. It may sound like a lot, but Karolina was able to incorporate this challenge into her daily life and found that she really did have the time to make fitness a priority. She explains, “Changes I have made include: plotting a route through the grocery store that makes me circle the store 3 or 4 times, and carrying the bags from the store to the car, even if it means a few trips. Basically, adding the benefit of exercise to chores that need to be done either way.”


Sometimes it can feel like the only way to see fitness results is to jump on the treadmill, but just because you don’t love the gym doesn’t mean you can’t get healthy. Other easy fitness options include parking further away from the building in parking lots to increase the amount of walking you do, taking the stairs up to your office rather than the elevator, and taking your dog for an extra long walk.



And the possibilities are endless. Instead of going to see a movie, take a couple of laps around the entire mall. Bring a friend! Download a free pedometer app for youriphone and android, and set a goal number of steps for the afternoon, then shop till you drop.


Don’t want to spend the money? Leave your credit cards at home and split up to find the craziest outfit or items in the entire mall. Bring healthy snacks so that you won’t be tempted by the food court, and remember to always drink plenty of water. And if you’re not into shopping, head to a museum or an art gallery. Most cities have plenty of free and fun options. Turn on your pedometer and walk the afternoon away.


Sure the treadmill is always an effective option, but when a fitness plan isn’t fun, it’s harder to stick with it. A little creativity goes a long way and each monthly PXE Health Challenge video is full of creative tips for reaching each health goal. And yes, it’s a change to incorporate exercise into your weekend or evening plans, but substituting fun and dynamic activities in place of sedentary ones like watching television is a really substantial way to start getting healthy that won’t even feel like work.


And wait until you see the results! When we asked Karolina Perino the changes she had noticed in herself, she admitted that the question brought a smile to her face. “There are obvious changes, like my cholesterol level, which-with the help of medication as well-dropped like a rock. But there are also ‘fun’ changes- muscle tone, which increased my confidence, and endurance- I can actually run up the hill to my in-laws now.”


And you may notice the changes at times you wouldn’t even expect. Many people note an improvement in their mood and day-to-day energy levels once they start working out regularly. Karolina says, “The best realization came through when I was blowing up a little pool for my kids. In the past, I would get dizzy after 5 blows, see stars in my eyes and have to stop. I was at my sister in law’s and offered to blow up her baby pool. I did the whole thing without thinking twice, and then it dawned on me: wow, my lung capacity must have increased, no shortness of breath, dizziness, or stars!” It can take persistence, but you have to remember that the changes you’re making are having a positive effect on the inside even before you notice a tangible difference.

"I have watched people close to me succumb to illnesses that were in part preventable, or manageable, with self-control. I do not want that to happen to me."


This year, the PXE International 2012 Biennial Conference is focused on promoting healthy choices in the lives of PXEers. The first day will offer free consultations with a personal trainer on how to customize your health goals to fit your life. The second day will be all about getting up and moving. A fitness instructor will lead an introductory fitness class that will inspire you to make working out part of your routine. In addition, Kim Griffiths will be leading a simple yoga practice so that everyone walks away with some therapeutic exercises to take home with them. She will specifically address balance, depth perception, healing tired eyes, visualization meditation, and controlling your breath. This is especially beneficial during eye surgery and procedures. We hope you’ll join us for these and all the other great events at the 2012 Biennial Conference on September 22-23, 2012 at the Bethesda North Marriott in Bethesda, MD. Register here.


Wherever you are in the journey to getting healthy, PXE International is here to help. Check out the monthlyHealth Challenge videos and post your creative fitness ideas through Facebook, Twitter and our Chat list.