Winter 2001 - Newsletter
Sports & Exercise
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Patient and Parent Perspectives
When To Say Mercy
by Joni Poe
I am a 14-year old with CF and I attend Oxford High School. I have been active all of my life and can remember how much fun I had playing in the gym at 6 years old.
I love playing sports like football, softball, or just exercising at the park.
I think exercise is important because it not only helps you to keep your body in shape, but it also helps keep your lungs in good condition. I do my CPT, and my aerosols, but I can feel a difference when I do not exercise.
With that being said, about a year ago, I started spitting up blood. It started out as streaks and just every now and then. Last January was my scariest time because I spit up approximately an ounce and had to be admitted. This past September I had spit up about a tablespoon. When all of this was happening, the doctors asked me to hold off on exercise until they found out the reason for the bleeding.
I fought this and continued to exercise a little bit. The bleeding seemed to come back every now and then. It is frustrating to not be able to exercise. Now I still try to exercise at times and hope the bleeding will stop so that I can be a cheerleader. If not, then I will have to deal with it. My motto is: Whatever doesn't kill you, makes you stronger. I don't want things or my own excuses to stand in the way. CF will just take its course and I will go on from there.
It's A Fight
by Chuck Brake
My name is Chuck, and I grew up in a rural middle Georgia town. I had a normal childhood and was able to play ball and loved sports. I did not see signs of CF other than taking salts tablets when I sweat a lot, and having bad sinus problems.
I continued sports while I was in the army with boxing and rugby. I spent three years on active duty and six years on the reserve. After the army, I walked on at Auburn and made the team. I played about two years and injured my back. I had to give up sports due to my back injury.
I found out I had CF when I had a bad episode of bleeding, thinking it was my sinuses. I was 37 years old and was working when the doctors said, "this is not normal", and sent me to an ENT doctor at UAB. Then the mystery took me to Children's Hospital.
After being diagnosed, I came home upset and told my wife, and cried together. She then said, "You might as well quit crying because there is not but one thing we can do. That is to fight. Feeling sorry for yourself will not accomplish anything." My wife has been my rock and has been a tremendous help. She gives me my CPT everyday and has never complained or said that she was too tired to do this. I can vividly remember Dr. Ruiz saying that, at first, I may not think that CPT is important, but later I will. He was right. I can actually see a big difference if I miss my CPT.
Another thing that I have learned is important is exercise. I try to do as much as my schedule allows. Exercise helps not only to bring mucus up, but also gives me energy and endurance throughout the day. I plan to stay and fight CF and whatever it takes. My goal in life is to live longer than anyone with CF and not give into this disease. I am not afraid of dying but with CF I have made it a personal issue. I encourage everyone to do your CPT and exercise and keep fighting. It does make a difference.
Seasons Come, and Seasons Go
by Staci Barker Wood
When Brett asked me to write about the importance of exercise for individuals with Cystic Fibrosis, I have to mention that I was somewhat hesitant to give my input. You see, my life has been filled with experiences and activities that I have fun with, not with experiences that I would consider grueling workouts. In fact, I truly cannot remember a time that I set foot in a gym to do anything other than socialize. Even with this being said, I have to admit that I have been in good physical shape for the majority of my 26 years. My younger years were my most athletic years. I was not concerned with having to get in shape for CF or to bulk up muscles, but instead I was concerned with having fun and doing whatever it took to accomplish this task.
As a young child, I was very active in all of the sports activities in the neighborhood and at my school. My parents' motto seemed to be, "If she thinks she can do it, don't let her think otherwise." I won just about every race I entered in elementary school. I began water-skiing as a hobby. I not only looked like a tomboy, but I also ran around like one. In middle school I began training to try out for cheerleading. Okay, so I did not make it, but I did stay in shape by continuing to participate in my beloved hobbies. I was able to try out for cheerleading again in high school and this time I actually made the squad! Summer cheerleading camps were brutal, but my pals were just as burnt out as I. During this time I did not have a tough regime of exercises to whip me into shape, I just did what came naturally, and I had fun!
Once high was over, my "after school" activities quickly disappeared. Water-skiing weekends continued, but grew more and more difficult to enjoy. You see, I began getting headaches from lack of oxygen and sometimes I would cough so hard that I would throw up. After a few of these experiences, I decided to stop skiing. Slowly, I began to get weaker.
My excuse to myself was that I did not want to do anything that would make me grow out of breath. Finally I got to a point where this breathlessness grew so severe that I could not even walk a short distance. I had a lung transplant and was quickly back on my feet and on the treadmill. For nearly two years, I was committed to walking and re-building my strength. I felt better than I had ever felt.
Today, over five years later, I am struggling with trying to find my "fun activity" to get me motivated again. My lungs have deteriorated significantly since my transplant and I do grow out of breath quite easily. It is hard to find time for these activities when you have a family, go to school, and/or work full or part time. These are the excuses I give to myself now when I question why my legs are so weak or why I grow out of breath after climbing a flight of stairs. Am I going to go out and join a gym, sweat up a storm, and perhaps be a little miserable? You know, I think I may do that someday. However, right now I am going to try and develop a schedule here at my home in which I walk on my treadmill, lift small weights, and use my yoga tapes. That is what works for me -- this is what is fun for me.
I am not expecting miracles, such as big muscles and unaffected lungs, but I am expecting to develop and endurance to get through each day a little easier while preparing for whatever obstacles are ahead in my future. The important thing is to do what you want to do, enjoy what it is you do, and make sure that you benefit from whatever it is that you are doing. Remember -- have fun! It's easy!
Please Don't Dream Of Football
by Wanda Mullally
I have a son, Jonathan, who is 14 years old with Cystic Fibrosis. He once told me that he only has two thing in life he has ever dreamed that he wants to come true. One is being healed of CF, and the other is playing football. Jonathan has wanted to play football since the third grade. I would think to myself, "Great! Only two small dreams that he wants to come true!" This has been very hard on me because of Jonathan's health. I truly worry about his health.
Jonathan had done everything else that a child without CF could do. I try not to treat him any different. The struggles come when the tings that he wants to do are not within his capacity to do. He is a fighter and loves a challenge. Last year he kept requesting to play football. I continually said, "No", because I remember his doctors telling me two things a long time ago. The first thing was that being out in the sun was something to be careful of because he sweats a lot. The other was the fact that his lungs may not have the strength as others and football was mentioned early on, and I have always told myself that it may not be a good thing.
I lived with this premise, and the older he got, the more he wanted to do it. Last year I got sick of hearing this and said, "Look, if you want to play, then ask the doctors." At this point, I knew the doctors would say no, and wanted them to be the bad guys for once. One day in clinic he asked Dr. Lyrene, and to my amazement, Dr. Lyrene said yes. I about fell out of my chair! Now that wasn't funny, they threw it back on me. I plan on letting him try it though I realize I will not have any fingernails by the end of the first game. I have come to the conclusion that he may not be the star runner, but at least he can try.
Treat each person or case different because all children are not alike, just as all personalities are not the same.
The one good thing about letting him play sports is the exercise that he gets. I believe that exercise is good to an extent. It may keep him out of the hospital and help grow strong bones. I have thought about getting a treadmill like they do at the hospital. To me a treadmill will be useful if the child is sick, but if he is active, then I do not really think that it is a must. On the other hand, if a child stays in the house all the time and does not get very much exercise, then a treadmill may be needed.
The reason for me to be hesitant about using a treadmill is the problem of keeping on weight. I have learned the importance of exercise to help with the muscles and breathing so that deterioration does not occur. I hope this article has been of help to those parents that have questions about exercise and its benefits.