How Cystic Fibrosis Has Changed Our Lives

May 7, 2019 | Blog

May is Cystic Fibrosis (CF) Awareness Month and a time for us to reflect on how well we are doing on improving the approaches to fitness for individuals with CF. Just a little over six years ago, the idea of the institute came to be. The integration of a multidisciplinary exercise approach was relatively new back then, but over time, increased research and knowledge about the benefits of looking at exercise programing through multiple lenses, such as at cardiopulmonary, neuromuscular, biomechanically, psychosocially, etc. has developed. Over the course of the last six years, we have worked with some amazing individuals with CF and it has changed our lives.

            In December of 2017, the Cystic Fibrosis Fitness Institute (CFFI) hit the ground running and opened up the official home headquarters of the Cystic Fibrosis Fitness Institute in San Rafael, California. After 4 years of extensive research and hours and days spent observing and working closely with medical personnel at Stanford’s Cystic Fibrosis Clinic, one of the top CF clinics in the world, we gained the skill sets and confidence to bring this idea to life.

            We believe that in order to put together the best exercise program, there needs to be evidence to back the exercises that are in the program. It then has to be integrated and reassessed over a course of time to determine if that fits an individual’s set of goals. Interestingly enough, our staff at Pulmonary Performance Institute (PPI) (formally known as CFFI), do not have cystic fibrosis. The staff at PPI is made up of exercise science specialists, exercise physiologists, pulmonary researchers, and strength and condition coaches. Each day, our staff dedicates their time connecting with the CF community through social media, podcasts, communicating with and working with individuals with CF. The staff at PPI knows that the best way to learn about how to support someone with CF is to speak directly to individuals with CF and learn about their daily living. While we do not have CF ourselves, our strongest tie to the CF community is our passion to help individuals with cystic fibrosis and learn the science behind pulmonary conditions to develop exercise programs to improve one’s quality of life. Each staff member at PPI has dedicated his/her life to researching, programming, and applying their findings to develop individualized fitness programs that help to improve the quality of life in individuals finding CF and other pulmonary conditions.

            We have learned so much from working with athletes with CF. In only the past year, the CFFI division has designed individualized programs for over 100 athletes, which wouldn’t have been possible without support through donations, spreading of awareness of cystic fibrosis and CFFI on social media platforms and through word of mouth from family and friends.

          Individuals with CF are the true fighters. The perseverance and strength of individuals with CF who continue to fight for their lives each day, are the individuals who inspired the spark that grew the Cystic Fibrosis Fitness Institute Division (CFFI) into the Pulmonary Performance Institute (PPI). Our foundation at PPI is built upon the strength and grit to beat CF, just as the individuals with CF do each day, continue to never back down and will win this battle.

Please visit https://pulmonary-performance.com/donate/ and @cffitnessinstitute to learn more about how you can donate and help support those with CF.

Any and all donations and support are greatly appreciated!

For more exercises content check out our YouTube Channel: Cystic Fibrosis Fitness Institute 

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Intrinsic motivation is something that develops over time. Kids don’t yet have the cognitive abilities to grasp the concept that, “exercising is good for physical and mental health.” The understanding that by “doing something good for your body now, your future self will thank you,” is far too abstract. Kids don’t live for the future, they live for the here and now.

By the time children are in high school and/or go through puberty, those high order thinking cognitive processes begin to develop. However, social obligations and a sense of figuring out one’s own identify often trump the desire to be consistently active for one’s own physical and/or mental health purposes.

Sports certainly help, as they play a role in encouraging healthy competitiveness within oneself and others, as well as promotes team building and social opportunities that child and young adults actively seek out. However, not every kid plays a sport or has the health opportunities to actively participate in one. So, how do we encourage motivating?

 

There are two types of motivation: intrinsic motivation and extrinsic motivation. Some will say, intrinsic motivation is ideal because it creates long lasting effects on one’s drive and purpose to reach a goal. The definition of intrinsic motivation is, “behavior that is driven by internal rewards.” Extrinsic motivation is the opposite. Extrinsic motivation is defined as, “behavior that is motivated to perform an activity to receive an award or avoid punishment.”

 

When starting to increase your child’s motivation to exercise, extrinsic motivation is the “easiest” way to go. When young, a child/teen is beginning to develop his/her own sense of motivation and enjoyment from exercising, something that is not going to happen overnight. Fortunately, exercising regularly will naturally contribute to developing intrinsic motivation, as it increases the feel-good happy chemicals in your brain (serotonin, dopamine, endorphins). But, habits do take time, so here are three tips to increase your child’s motivation to exercise!

  1. Reward System

There are often mixed reactions to implementing a reward system. However, a reward system is not something to frown about when working on establishing a foundation for positive behaviors. Research has shown that children respond better to positive reinforcements than they do to negative reinforcements.

How to begin a behavior reinforcement plan:

  • For children ages 7-12: Make a personalized goal tracker with your child. For example, if want your kid to do something physically active 3x a week, create a page with three boxes per week to check off after each workout (e.g., can use stickers, a drawing, a penny, etc.)
  • For children 13 and older: they can often keep rack on their own, and independence is key for teenagers and young adults.
    • Each workout = 1 point.
      • It is up to you to decide how often a reward occurs and what the reward will be.
      • Reward types: with your child’s help, create a list of 5 items/things that might be motivating to earn. For example, 30 minutes of a favorite show, a new toy or “surprise box,” staying up later one night a week, choice of a favorite meal for dinner, a new book, etc. The possibilities are endless!
  1. Social Opportunity

As an adult, performing 15 reps, 4x on one exercise is manageable. Our attention is longer. We enjoy isolation more. We have intrinsic motivation or tangible goals set for ourselves, like losing weight. However, children and young adults are heavily socially dependent with shorter attention spans. Their worlds thrive around social opportunities, So, make physical exercise a social experience. Workout with your child, put on a YouTube video and together and complete 30 minutes. Put on your child’s favorite music on in the background and encourage your child to work out for 20 minutes (set a timer). One time a week (or more) invite a friend or sibling, make it an event that can be done inside or outside, and make it fun.

  1. Bring back Play

Which brings us to our third tip: Bring back play! Even if you have a teenager or young adult, play is important to developing a positive attitude towards physical exercise. Play can consist of hiking with friends or family, trying a new activity in your community, and generally, reducing the strict structure around exercise that children and young adults often try to escape as they build independence and autonomy. A majority of the time, exercising can consist of structured exercises catered around a specific goal, however, a few times a month it’s important to switch it up and encourage exploring of physical exercise through unstructured (play) opportunities.

 

 

 

 

 

 

 

 

 

 

 

 

 

Contact

EMAIL

PulmonaryPerformance@gmail.com

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Location:

1009 2nd Street

San Rafael, CA 94901

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