CF athletes

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roblake29

New member
Hey, just wondered if we have any people with Cf here who would consider themselves 'athletes'? I am 24 wcf and just ran the London Marathon in April, and after having got in touch with some other athletes with Cf across the world (some who have done marathons, triathlons and Ironman), I was considring the idea of setting up some fundraising initiatives that involve athletic events. I mean like organising runs, walks, hikes, soccer/basketball/hockey matches (whatever) etc. in various locations worldwide. Obviously physical exercise is very important for people with Cf, and encouraging and inspiring young people to get involved early on can be of real benefit to their health with Cf later. Also, I have read that continuing cardio-vascular exercise is of considerable use to adults with CF, but that once you stop, it is difficult to get back into it.
So, in the light of this I just wanted to hear people's reactions to setting up a charity/website (I was thinking of calling it CFathletes.org) and getting some events underway. Does anyone have any comments, suggestions, preferences, ideas, criticisms, feedback of any sort??? Does this sound like a good idea?

Rob 24 wcf
 
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JazzysMom

New member
How did you train? Did you have a trainer or physician/therapist working with you? My doctor recommended my starting to work with a Pulmonary Rehab program since I have never exercised on a regular basis & local fitness centers wont touch me (understandibly). I was just wondering how you were able to get to a point that you would be able to accomplish such a marvelous thing. To answer your question, no I am not, but maybe someday. I actually enjoy the idea of being able to accomplish such a thing, I just dont know if I have the discipline for the training it takes.
 
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BaylorCrew07

New member
Rob - kudos for running a marathon! That's something that I would eventually like to do, but for now I just keep to running around 3 miles a day. <img src="i/expressions/face-icon-small-happy.gif" border="0"> In response to your question, I do consider myself an athlete. I have swam competitively for over 10 years (on a club year round team & was captain of my hs team) and I currently play water polo for Baylor University. I also love running and lifting weights; I'm thankful that exercise is so beneficial for CF because I love to do it! I don't have any ideas as far as fundraising initiatives, but I'd love to help you out if you do get something together. I'm in the process of organizing a swim-a-thon benefiting CF research w/ the swim team I am coaching now for next summer, but that's the only thing that I have come up with. Good luck!

Debra
20 w/cf
 
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anonymous

New member
i played fastpitch softball from 1993-2001 and loved it but quit playing cause i moved and had an elbow problem.
 
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anonymous

New member
Rob - Congrats on the marathon! I think what you are doing is a great idea. From my personal perspective, it would be great if you had information on cardio workouts for people with arthrities, osteopenia, etc. I have both of these and most days it hurts me just to walk, so I'd love a resource where I could get more info about how I could still get the benefits of a workout...not that I'll ever be running marathons....<img src="i/expressions/face-icon-small-wink.gif" border="0">

Amy
36 w/CF
 
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stevehof

New member
I wouldn't call myself an athlete but I believe regular exercise has been a significant factor in keeping me relatively healthy. My FEV1 is 55% but I can still tolerate an hour a day of fairly vigorous exercise (at sea level). Currently, I do one of the following daily: skate 8 miles, power walk 4 miles or bike 13 miles. I am 57 years old....nearly an old geezer - <img src="i/expressions/face-icon-small-happy.gif" border="0">
 
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anonymous

New member
Rob,

I congratulate anyone who completes a marathon, so congratulations. However, I have a difficult time understanding how you do not know your PFT numbers. To a CFer this is everything. Unless you realized you had CF late in life, or if you have an extremely mild mutation or manifestation of CF, I just can't comprehend this. Please enlighten me.

Thanks.

And again, congratulations on your accomplishment.

Lance
33 with CF
 
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anonymous

New member
I played ice hockey from age 3 until my junior year of college. I probably would have played at college all four years, but I had a severe dislike for the assistant coach. I played roller hockey for about three years and just stopped last summer. I also played tennis through high school and I golf occassionally.

I don't specifically know my PFT #, I was just in for a clean out, prior to this I believe it was 30-35%. I just don't really care what it is. I'd rather not know what it is exactly, I'd probably sit around feeling sorry for myself and obsessing over the number if I did. I also have no idea what mutation I have. There are a lot of things about CF I have no idea about.

Jim 28w/cf
 
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roblake29

New member
Stevehof thats awesome! Isnt the feeling of being fit the best in the world!?
Lance, to be honest mate, I rarely go to the hospital so I have no way of knowing what my scores are. Although I did go in December for a voluntary check up (because it had been 2 years since my last one) and they ran some tests. The doctors said I was in better or same health as before and they were happy, so I was happy. I feel I can epathise with Jim on what he said about his PFTs:

<blockquote>Quote<br><hr>I'd rather not know what it is exactly, I'd probably sit around feeling sorry for myself and obsessing over the number if I did.<hr></blockquote>

This is exactly how I feel. When I was younger (mid - late teens) I used to check my weight every morning and evening and if I wasn't happy about how heavy I was (at the time I was very underweight and trying really hard to put on weight), I would spend all day obsessing about how much of a problem weight was and why I was a failure gaining weight. Im not a negative person at all, but I believe a number can't tell me how Im feeling (although I agree it could highlight a problem). Now I havent stepped on a scale for a few years (would you belive) and have no issues with my weight, most probably because I have forgot about the issue. I may not be as heavy as I need to be, but I am most definitely in a better position and midset to put on weight should I try to. Stress never helps anyone!!
So yeah, thats why Im not so bothered about my PFTs. I feel fit, healthy and can run a marathon in 4 hours. All my PFTs are gonna say is that I could be healthier. Well, I dont really want a constant reminder of my CF, especially when I feel so good!
Again, call me ignorant... but on this particular issue at the moment Im fine with it.
But, thank you for asking! Hehe!

Rob 24 wcf
 
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SeasonsOfLove

Guest
I'm happy that some people with CF have high enough levels of pulmonary function to run marathons.

However, some are not currently as fortunate - there comes a point for some where their pulmonary function drops enough to make running a marathon an impossibility. And while I agree an active lifestyle and upbeat persona is a good thing, these two things do not always prevent a decline in pulmonary function or progression of lung disease. For example, Colleen was involved in every sport imaginable (soccer, T-ball, field hockey, softball, daily swimming in summer months, etc etc). Yet she began have lung problems in the midst of all of this sports activity.

My point is this: progression of CF is not wholly dependent on what the person does - there are other factors. And quite frankly, some of the people who still have little to no lung involvement sound like show-offs sometimes in their posts - as if their level of activity has kept them healthy (and insinuating that those with serious lung involvement are slackers of some sort). In actuality, it's a bit more complicated than that.

Have a good day everyone,
 
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roblake29

New member
Yes yes, I appreciate what you are saying Kathy. I am not suggesting that playing sport and doing exercise prevents people from having problems with CF. That would be ludicrous. What I am suggesting, and I think I did this quite clearly, is that playing sport and doing regular vigorous exercise is of considerable benefit to the health of people with CF. It is not a solution to the problem, but it is of benefit. I think most would agree.
I have to say, I resent the insinuation that I was a show off because I ran a marathon and have CF. Im sorry, it sounded like a personal dig at me! I am very proud of my accomplishment and I love telling people about it. But if you read any of my previous posts on the topic, I have always maintained that I am only able to do this because I am so lucky/fortunate. It is good fortune that allows me to do this, and be as active as I am, and also not worry about my PFTs. I don't make any claim to being particularly brave or determined, or even make an insinuation that every person with CF is capable of running a marathon. In other words, I have never intimated that you are a 'slacker' if you cant. Sometimes I may go overboard with the encouragement that I give people to do the same, but it is to only motivate and (dare I say it) inspire others to become more active and set themselves personal goals like I have done. For some it might be to walk a half a mile; for others with Cf, it might be to run 10 marathons... but at the end of the day it is a positive step towards better health. This was the point of my original message (and my idea for a website/charity), to share in the achievement of goals of others with CF.
I hope this clears up the confusion.

Rob 24 wcf
 
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SeasonsOfLove

Guest
You mention that you are trying to inspire people and that is good advice for people with high functioning lungs!

What I'm trying to point out pertains to people who do not have high functioning lungs:

For people with a low level of lung function, running a marathon would be NOT beneficial to their health. There is a point where a lower level of exercise than marathon running is recommended (walking on a treadmill for example), and where trying to run a marathon would have a negative effect on the person's health and not be beneficial.

Please note that I only wrote in on this topic because I was concerned that some people with low lung function might actually try to exercise to the point of hurting themselves. (Or that some well meaning parents might encourage a child with a significant amount of lung disease to attempt exercise their bodies are no longer capable of doing).

Again, congratulations on running the marathon! For someone with CF, that is a fabulous <img src="i/expressions/present.gif" border="0">

Good luck to us all,
 
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anonymous

New member
kathy made a valid point that some people (ie, cfers who are in excellent health). that doesnt make her mean or without love or whatever your rather strange post implies
 
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SeasonsOfLove

Guest
Kiwi Lady Eileen,

I did not attack Rob's cause in any way - and did not attack Rob either. It didn't seem to me that Rob was offended by my post either!

My post was not only in response to Rob's anyway - it was a general commentary on the differences in what is possible for people with mild, moderate and severe CF.
 
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roblake29

New member
It doesnt matter if you can walk half a mile or run 10 marathons, I believe that it is important to fight the cause and improve our health as much as we can. We should encourage physical exercise among all Cfers, no matter how much or how little can be achieved. No, I was not offended by Kathys responses but I felt that perhaps they might not have been fully understood... or maybe I didnt explain it well enough. Anyways, the points we have both made are obvious ones.

Rob 24 wcf
 
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SeasonsOfLove

Guest
Thanks Rob - I do support your cause and wish you the best! <img src="i/expressions/face-icon-small-happy.gif" border="0">
 
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roblake29

New member
Awesome. Thanks! I'll check it out. I got in touch with a lady called Tracey Richardson who is from NZ. Her kids both have CF and shes a Ironman (woman) triathlete! Nice, eh!? Shes raised loads of dosh... certainly something to aspire to.

Rob 24 wcf
 
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