For people with cystic fibrosis, getting “back” into shape is a common occurrence. Because of the nature of the disease, patients often experience set backs in both their health and fitness routines. But, exercise is an important and essential part of remaining compliant with treatments and medications in order to live a longer, healthier life with CF. Continue reading CYSTIC FIBROSIS WIND SPRINT 66: CIRCUIT TRAINING 1
By: Holly Beasley
Approaching college while living with Cystic Fibrosis can be undoubtedly frightening. Although, great challenges bring great rewards. This is what I have come to learn during my time at the University of North Carolina at Chapel Hill. While I am only a sophomore at the university currently, I hope the knowledge I have gathered through my journey thus far will serve to touch others with CF.
I believe that living with Cystic Fibrosis requires honesty with yourself and others. Therefore, I must be completely honest with you regarding the college experience while living with CF. I do not aim to discourage but to instead challenge you to prevail. I think a unique strength was placed within all of us with Cystic Fibrosis to surmount any challenge that presents itself in our lives. One of these being college, if you so choose.
College with Cystic Fibrosis will certainly not always be easy. As you may know, sick days, lengthy therapy routines, and hospitalizations come with the territory. Combine all of this with the pursuit of higher education and one can become overwhelmed. Balance and prioritization become key in the life of a college student with CF. I know I have spent countless nights reading my textbook while my Vest was simultaneously shaking my lungs. There have also been times when I completed assignments while lying in my hospital bed. This is where balance comes in to play. Finding a system that makes time for both school and health care is crucial, but I want you to be certain that it is also achievable. Despite some extra setbacks and effort, I finished reading all of those pages in my textbook and an assignment has yet to be turned in late. Now, this is where prioritization becomes a major factor. In order to be an efficient student, your health must come first. If doing both becomes too taxing on your body, please remember that it is ok to give yourself a break from school. This has been a difficult lesson for me to learn as a student who always strives for perfect grades. The times I have put school before my health, it has never worked in my favor. I only became sicker, causing a worse impact on my academic performance than if I would have taken the time to recover initially. Carving an hour or so out of my day for therapy when I first noticed signs of sickness would have been much easier than the eventual hospitalizations that resulted from the neglect of this fact. Always put your health first. The aspirations you are seeking through your college journey can only become a reality if you are alive and well to participate in these realized dreams.
All of this may seem rather challenging. So how does all of this ultimately become rewarding? Well, that is entirely up to you. I’d like to give some insight on how this process has rewarded me, personally. This might be the same reasoning that inspires you to pursue higher education or you might have a unique drive that motivates you. Either way, hone in on this sense of why it is all worth it.
Each day attending college rewards me because it serves as a constant reminder that I am equally as capable as anyone without Cystic Fibrosis. We are all different and many of us have encountered at least some degree of a setback in our lives. Mine just happens to be Cystic Fibrosis, but I can work with this along-side my peers. One classmate may have had a parent pass away, another battled a different disease or any other challenge that life may present. Yet, we can all come together in one classroom in order to learn and grow as equals. College allows me to reflect on the fact that the circumstances life presented me with do not define me as lesser. Instead, they exist to strengthen me so that I may become more. Life with Cystic Fibrosis has not been easy and this has never been truer than in my time at college. As I sit here now, I can still honestly say that I am happy to have Cystic Fibrosis. We are forced to realize how special we truly are when challenged by this disease. Yes, I have experienced setbacks and hard times while in college. They have not defeated me and they will not defeat you. At times, I may have to exert extra effort because of my CF. The reward of knowing that I got the job done regardless is much greater than any challenge that college or Cystic Fibrosis may introduce.
An interview with Pamela Scarborough, conducted by James Ives, MPsych
Please give an overview of the role of exercise in cystic fibrosis (CF)
We know that exercise is beneficial in helping someone to maintain their lung function, stay strong and active and maintain a good quality of life. We also know that exercise can complement ‘airway clearance techniques’ – breathing exercises prescribed by physiotherapists to help clear the lungs of mucus.
As well as benefitting lung function, exercise can help to address other complications of CF such as low bone mineral density, CF-related diabetes, low back pain, postural problems and stress incontinence.
Then, there are many other wonderful benefits such as improved mood and sleep, which is important for someone with a life-limiting condition.
Without exercise, what other methods are used to help CF patients clear the mucous that builds up in their lungs?
As physios, we use a wide range of approaches. The traditional methods that people associate with CF physio are postural drainage, percussion and active cycle breathing techniques − deep breathing exercises to open up the airways of the lungs in order to get behind sputum and get it moving so that it can be cleared with a huff or a cough.
However, we are increasingly using other techniques, for example, oscillatory devices such as a flutter or an acapella; positive expiratory pressure devices such as the Pari PEP; or different breathing exercises such as autogenic drainage. There is also a high-frequency chest wall oscillating vest, which is like a life jacket that vibrates. The aim of all physio techniques is to open up the airways, loosen the mucus, and make it easier to clear.
How important do you think physiotherapy is for people with CF? How prevalent is exercise therapy in CF treatment?
Physio is a cornerstone of CF care and has always been recognized as having a very important role to play. Even from point of diagnosis, when a child may be asymptomatic with their chest, their parents are still taught to engage them in exercise and to get them moving around to make sure they’re maximizing ventilation of the lungs and helping to move any sputum that’s there.
The wide-ranging benefits of exercise on health are continuing to emerge. Throughout my professional career, I have seen people who have come from active families and the fitter they were when they were younger, the better outcome they have later down the line; they’re still functioning at a higher level because they had that training in their younger years.
People are seeing exercise as another way to help control their health, and it is also something that’s more normal to do and that they can do socially with their peers. Someone with CF often has a huge amount of treatment to undertake, a lot of which can be unpleasant, so exercise can be preferable as it is something that can be enjoyable. Every time we see a patient, we ask them about what they are managing to do from an exercise point of view.
What are the main differences between workouts that are specifically designed for CF patients, as opposed to just standard workout routines?
We don’t know exactly how exercise programmes for someone with CF should vary from the normal population; we still need more research to prove this – so what we’re saying is that people with CF should be doing the same amount of cardiovascular exercise and strength and conditioning training as recommended in the national guidelines for the healthy population.
However, because of the factors I mentioned before − that people with CF are very likely to suffer from postural problems, low back pain, stress incontinence and low bone mineral density, etc − physios prescribe exercise programs that make sure we’re addressing these issues before they become a problem, or if they are a problem, that the need is met.
Why is it important to have a personalized exercise routine and what range of exercise routines are available on Pactster?
It is important to have a personalized exercise regime because we are all different; we all have different interests and we all have different needs. There is a lot of pressure on people with CF to exercise for health benefits, so we must find a way to make it enjoyable and effective for them. We need to have exercise that is engaging and does not just feel like treatment. It needs to feel like it is going to be fun, as well as meeting the patient’s needs and be easy to integrate into a daily routine.
With a lot of the workouts we have on Pactster, we have really tried to normalize exercise. We know that exercise is medicine, but we want it to be something fun and normal that everybody does. We have used physios and people with CF who are qualified fitness instructors as instructors in the videos; but we film the videos out of the hospital setting, in normal clothes and cover popular exercise disciplines such as yoga, mixed martial arts, pilates, circuits and high-intensity interval training. We are creating more videos to cater for people of different ages and interests, and throughout different stages of the disease.
We are hoping that Pactster will overcome the usual barriers that put people off exercising, like lack of time and money, but that it will also make exercise easier for people who may struggle with low mood, find it hard to get out of the house because they are dependent on oxygen or equipment, have a compromised immune system or who may be too self-conscious to go to the gym. Some people with CF find group classes embarrassing because people may turn and look at them if they start coughing.
Pactster has been designed to overcome these barriers, so that people can gain confidence exercising in their home environments and be reassured that they’re exercising in a safe way, supported by someone who understands their condition.
Zelda and Leah, two CF physios from The Royal Brompton and Harefield NHS Trust
Please give an overview of Pactster and the unique features that you bring to CF physiotherapy?
Pactster offers health-specific exercise videos filmed with specialist instructors alongside community and motivational support. Our exercise videos have been filmed with CF physiotherapists and people with CF who are qualified instructors; and have been approved by the Association of Chartered Physiotherapists in Cystic Fibrosis.
We want people to be inspired by seeing someone with the same condition as them on screen, sharing their knowledge of how to use exercise to take control of their disease.
Currently, in the videos we have on Pactster, the CF instructors are quite highly functioning, but we’re creating new videos that will include people with more advanced disease and people who are pre- or post-transplant, as well as families and kids. Even with more advanced disease, there are still so many fitness role models with CF who who are phenomenal in what they achieve given the challenges that they face, and who have so much knowledge to share.
Pactster gives the opportunity for people with CF to workout alone or with others in a group setting, this is an important feature as people with CF are unable to meet one another face-to-face due to a risk of cross infection which can significantly impact life expectancy.
These group workouts can be facilitated by a person with CF or by a physio. The good thing about this is that it provides an opportunity for peer support, or if a physio is running the session it may have prevent the need for a hospital visit.
Group workouts are also about motivating and inspiring others as well as providing accountability, enjoyment, and the opportunity for learning. We are currently developing the behaviour change features on Pactster to make it easier to stick to an exercise regime.
Group, online workout has an unlimited number of people who are able to attend
Are there any limitations to the workouts? Do they need specific equipment? I’m guessing these are all open access to all CF patients?
In the UK, our arrangement with the Cystic Fibrosis Trust means that all people with CF, as well as their caregivers and physios can have free access to Pactster. Due to the way CF care is delivered in the UK, it is expected that anyone with CF coming onto the platform would have already been seen by a specialist in a CF centre and that they would have had conversations with their physio about the right amount and type of exercise necessary, as well as how to exercise safely.
It is expected that people come to the platform with some understanding of exercise and then they can participate in what they feel is right for them. Maybe they’ll try something they haven’t tried before because it’s been put right in front of them and it’s easy to do.
Access is free and the equipment that you need to use may vary from one exercise discipline to another. Some will require more hand weights, but you can improvise with a book or a can, for example. There’s also a kettle bell workout on there, if that’s what people are interested in. Generally, most of the exercises require an exercise mat, but not very much equipment after that.
Is it also open access to patients outside of the UK?
There is a monthly subscription of five pounds per month if you’re outside of the UK, but our aim is to try and make it free. As a British person, I believe in the NHS and I believe it is wonderful that healthcare can be free at the point of access.
I would love to make Pactster free for anyone who needs it because we want to reduce as many barriers as possible for someone exercising. Although it’s not much of a financial barrier, making payments is still a barrier for some people. We’ve got people who have signed up from other places around the world, but people are already asking whether there is going to be a similar arrangement in Germany, South Africa, or America and I’d like to find a way to make sure that we can make it free for them.
Will you expand the exercise routines and physiotherapy for other conditions in the future or are you focusing primarily on CF?
I’m predominately a CF physio by background and coincidentally, one of my best friends has CF, so I have a very strong personal attachment to creating this for people with CF and I want to see it working, being a huge success and making a difference.
I do feel that being able to offer specialized exercise videos to someone in their home is incredibly important, as well as being able to provide remote physio support and to connect people who are going through similar conditions. Once we are happy that we have CF working as well as we want it to from a behavior change point of view, as well as videos covering all stages of life from point of diagnosis through to end of life, then yes, we are looking to provide the same service in collaboration with other hospitals or charities for other health conditions.
One example, which we think would be our next step would be working with people with breast cancer as we know exercise is a very important therapeutic intervention for people with breast cancer. Also, at different points of life from diagnosis, pre-mastectomy, post-mastectomy, chemo and radiotherapy, there are lots of barriers to exercise and lots of reasons that exercise needs to be tailored at different points for different needs. The breast cancer population would be another example of a population that we’d like to support using Pactster.
What would you like to see as the future of physiotherapy treatment for CF patients, both in the UK and globally?
I would like physio to be as easily integrated into someone’s life as it can possibly be and every treatment to be as effective as possible. I believe that is about personalizing care and looking at different ways to support people in different settings − at home, in hospital and in the community. I also believe it’s about tailoring our treatment and making it the best we can through creating more of an evidence base and not being afraid to progress with things. Physio is a difficult, laborious task for someone with CF and if we can make it as streamlined, personalized and effective as possible, then that would be awesome.
Ideally, I don’t want people to have to do physio. I want there to be a cure for CF, but so long as that is not the case, then let’s make the therapy the best we possibly can. I’m excited to see where things go from a digital health point of view, because I think there’s potentially lots of different things we can do.
Where can readers find more information?
- For more information on pacster: https://www.pactster.com/
About Pamela Scarborough
Pamela has been a phyiotherapist in the NHS for 15 years, predominantly working with people with cystic fibrosis. Pamela completed a Master’s looking at yoga for thoracic kyphosis and lower back pain in CF, as well as studying adherence and behaviour change in greater detail. Here, she most enjoyed researching and presenting in those areas, as well as teaching others, sharing new information and approaches on adherence and yoga within the community.
Since then Pamela has been working on Pactster, where she enjoys the creativity of a start-up environment and is excited about the potential of digital health in improving quality and delivery of care. She finds it incredibly satisfying to see people using Pactster and finding it beneficial.
We are extending the Spring 2018 deadline until November 15, 2017!
The United States Adult Cystic Fibrosis Association (“USACFA”) offers the Lauren Melissa Kelly Scholarship award each semester, in honor of Lauren Melissa Kelly. The scholarships of up to $2500 are awarded to adults with cystic fibrosis who are pursuing career certifications, associates, and bachelor and graduate degrees.
Please find scholarship criteria and requirements on our website and direct any questions to firstname.lastname@example.org.
A fall 2017 scholarship recipient, Elizabeth Shea, has shared with us how her college experience has been shaped by having CF and all that she has been able to accomplish through the help of our scholarship and her dedication to hard work and passion in performing music. In her own words:
As a winner of the USACFA scholarship for the fall semester of 2017, I am fortunate to have the opportunity to share some of my experiences as a college student with CF. I thought it might be helpful to kids who are applying to colleges now, or those who are in college deciding on a major, to hear a little about what I’ve done and why.
First I should say I am now a junior at Stetson University. I play flute and I am a double major: music education and music performance. I added the second major at the end of my sophomore year. I also joined the music sorority Sigma Alpha Iota in my sophomore year. Both decisions have had a big impact on my life at college.
Music education was my original major, and believe me, it kept me very busy. Between classes, private lessons, multiple ensemble rehearsals, mandatory recital attendance, private practice, classroom observations and studying, sometimes I hardly have time for lunch. But, I knew that if I added a performance major, my playing ability would be seen as more competitive down the road when I’m applying to graduate school, or even in competing for a teaching job. So, I went for it.
My decision to join a sorority was also significant. Not only am I a member, I am now the treasurer of our chapter. With weekly chapter meetings, events, executive board meetings, financial reports, banking, etc. I’ve had to dedicate a decent amount of time to SAI. But the payoff has been great. The sorority gives me an awesome group of close friends who all share my love of music. I’m able to socialize with them and not just spend time in classes, performing and studying with them. I’m also getting some valuable experience being in a leadership role with responsibilities that are new to me.
So, as you can imagine, I’m really, really busy this year. I’ve had to be very careful to keep up with my medical treatments so that I can stay healthy. Bottom line is, don’t assume that because of CF you have to limit yourself or skip things. I might have to work a little harder to keep up with everything that I’ve added this year, but I am enjoying all the new challenges. Of course, this year is also harder because I’m a junior performance major and so I am expected to perform at a higher level. No pressure, right? But I think I’m up for it. Just try things and see what you can do. You can always cut back if you end up overwhelmed, but if you don’t try, you will never know if you could have done it!
Be inspired to be compliant. Watch this brief video to learn more.
Big Air Jerry is a video series created by the Boomer Esiason Foundation to educate young people living with cystic fibrosis. Continue reading Big Air Jerry: Compliant with Cystic Fibrosis
By Ella Balasa
I’ve created a list of young woman and men who make the most of life despite battling Cystic Fibrosis. They share their experiences, the good and the bad, on social media. They inspire, educate, and spread awareness about CF. As a person with CF myself, though I live a full life and experience similar obstacles and triumphs, I haven’t gotten the courage to show this kind of vulnerability. I hope they show both CF and non-CF people alike that we all can do many things we set our minds to despite having seemingly insurmountable obstacles in our way.
- Instagram: Fight2breathe
Caleigh is a 27-year-old woman who received a double lung transplant October 20, 2015. She shares posts about her daily struggles and triumphs in dealing with CF and transplant and now more recently dealing with the rejection of her lung transplant and her rapid health decline. She is incredibly knowledgeable about many procedures and tests her and her doctors discuss and she shares them with her followers in a way everyone can understand. Her genuine personality, charisma, and strength are all palpable through her words through which she relates her true fears, hopes, insecurities, and raw emotions about an unknown future. She finds something beautiful in every hard day, whether that be being able to see her pets, spending time with her loved ones, or just reading the uplifting comments on her posts.
- Instagram: lung_story_short
Rima shares her experience of fighting CF through humor and keeping lighthearted. Her sister shares her journey as being her caretaker while she waited for a transplant. She spent many days in the hospital exploring the hallways, playing games, crafting, and making friends with nurses. She has recently received a double lung transplant (5.14.17) and is now sharing her amazing recovery process day by day! Her lung function is increasing quickly and is gaining so much endurance and strength since being transplanted. She shares a lot about CF awareness and is becoming more known through the CF community.
“Hi my name is Rima and I have Cystic Fibrosis. I had come to the point in my health where my old lungs could no longer serve me and I was in need of a double lung transplant. Here I am now at 27 years old with brand new air baggies! It was a long journey but I am made it with the help of my trusty sidekick Laima, my sister. She joined me on my quest for new lungs when I decided to move to Colorado. The transplant center there decided that they didn’t want to do my transplant because they said that my post-transplant care would be tricky and risky due to how resistant the “bugs” in my lungs were to all antibiotics. So then the search for another center began. Thanks to my sister she discovered the U of M in Minneapolis MN with the help of a friend. Since that discovery, we are now part of the U of M family indefinitely. Throughout this whole thing, we decided we wanted to document and share everything Cystic Fibrosis related as well as transplant and organ donation. We started a blog last spring as well as started sharing on social media via Instagram, Facebook, and Twitter. We want to help spread awareness because there are so many people out there that are unaware of Cystic Fibrosis. There are also a huge amount of people that aren’t organ donors, many of them just don’t know how to become one but many just avoid the subject due to either personal or religious reasons. Another thing we want to show people with CF is that you can still have a fun-filled adventurous life, you don’t have to live your life cooped up in your house to keep good health. Laughter, sunshine and the outdoors soothes the body and soul! The Cystic Fibrosis community needs a cure, and with the help of spreading awareness, we can help raise funding for research! If you would like to keep up with our story you can follow us on Instagram: @lung_story_stort, Facebook: lung story short and for the blog atwww.lungstoryshort.com” -Rima
- Instagram: Tiffrich22
Tiff is a 28-year-old woman who was diagnosed at birth with cystic fibrosis. She resides in sunny California where she got a transplant November 30th, 2016 at Stanford University. A few years ago she started a campaign to meet her idol Taylor Swift at a concert. With the help of family, friends, and strangers, she got her wish. Her campaign led her to start her very own YouTube channel, LUNGS4TIFF, where she helps educate people and raise awareness about CF and the hardships while telling her story through videos. She intends to show others through social Media that having a positive spirit and desire for fun in life helps anyone get through the toughest times. She is thriving and planning for adventures to come.
“Through my Instagram, I have been able to show all of the sides of CF and transplant. I knew I wanted to be real and show the not so “glamorous” side of this disease, as well as the happy go lucky side. I feel by showing the hardships that I have faced, it has helped others know that it’s okay to struggle. I always say that there’s always someone going through much worse and that I’m lucky. Now with new Lungs, I am able to start my second chance at life and go check off my bucket list items. I have been able to check off my first NBA game (Go Warriors) and ride in a hot air balloon! I am blessed and can’t wait to post more about my adventures and my journey with new Lungs.
Another way I use Instagram to help the CF community and foundation is through mine and my best friend, Lea, @SaltyCysters page. We have joined forces to provide awareness and started making workout clothes to motivate the CF community to get their lungs moving and profits go to the CF Foundation to use for research and development towards a cure.
CF Awareness is very important to me. My passion is to help others and I think that by sharing my story via Instagram and all forms of social media, I am able to show that being positive is key to conquering this horrific disease. I will continue to raise awareness and share my story, hoping that CF will soon stand for Cure Found.” – Tiff
- Youtube: Staying Salty Youtube Channel
A group of 6 individuals talk, inform, help, and educate about their lives and experiences with CF. They come from all different backgrounds and live all over the country. They each post a video a different day of the week. They make videos on various topics related to living life with CF, including a day in the life, how they tell others about CF, surgeries they’ve had, medication organization, CF clinics and much more. Many videos are informative and interesting to view how others with CF are managing and succeeding in life! They have full-time jobs, they travel, they raise families, and importantly, they raise awareness for the CF community.
- Youtube: The Frey Life
A young couple, Mary and Peter, along with their pooch Oliver, share their day to day lives in daily vlogs on their YouTube channel. Mary has CF and they share the details of daily breathing treatments, doctor appointments, and the highs and lows of dealing with a chronic illness, both as a patient and a partner. Besides the aspect of Mary’s diagnosis, they share their strong faiths and their beautiful love story as a couple with their 100K subscribers.
In response to a Facebook message from Alexandra, Jerry reviews the core exercises he uses to stay in shape during an extended hospital stay. Always remember – no matter what workout you do, use gloves and sanitizer for a clean and safe environment!
Continue reading Cystic Fibrosis Wind Sprint 56: Extended Hospital Stays and Core Workouts
We’re still celebrating Jerry Cahill’s 5 year post transplant anniversary by giving away his documentary, Up For Air, for FREE through April 30th!
Use discount code “BigAir” to stream!
The past few days for Julia have been rough! She was dealing with the stomach flu, but now she’s better (yay!). So in order to get her back on her feet, we decide to launch the first ever Making it Continue reading Making it Matter Ep. 31—Julia Recovers From the Stomach Flu