Wednesday, April 4, 2012


It's is easier to write an explanation under the "CF & Exercise" here rather then replying to each person, as I don't think every reads my reply, if I'm replying to a different person. To "Richard" - you said that a person who didn't exercise, and just did physio, sadly passed away. Does that not strengthen my case that exercise is better then physio? To "Me" - firstly, I don't have a less aggressive, mild or easier strain. Look to the left of the blog and read the "Bio" part. Iv a double delta 508 geno type. I was diagnosed at an early age, because of my symptoms. If I had a mild, or less aggressive form, then i would have been diagnosed later on in my life, which I think is the key part here of how I don't have a mild case. I said it before in an earlier post. Why must I have a less aggressive case of CF just because I am able to run? It's not a coincidence. When I was younger, my parents would do physio, and alternative physio 6-7 times a day, and more if needed. It was more of an obsession. When i got older, and was able to walk, I was exercising, and my parents would make me do fun exercise so I wouldn't feel that I was doing this physio every day. I would be out playing for hours on end, and still have to do physio twice a day, every day. This laid a foundation as where I could have a clear, scar free set of lungs. The foundation is the part where a lot of people aren't seeing. Once someone get older, they can't just start doing these things. It's probably too late in most cases. It needs to start at the earliest age possible, and continued on from there. I bet if you ask you will find, the ones who don't live a normal life, or die young, that it starts with the parents. I know it's hard to read, but it's true. Parents are responsible for their kids up until the kids can do a certain amount themselves. The parents think they might be doing enough. This puts a benchmark on the child's expectations. Inevitably they get worse, and die. This isn't just me making this story up. At the CF conferences (which iv never been, but my parents have), this story would come up very regularly. This next story is an important one as it proves my point. Last year, I started to get extremely annoyed with running. I was training, and then ended up either getting injured or getting some sort of generic sickness (that everyone else would get) which would leave me out of training, which meant I couldn't get a consistent training block to enter into races. This lead to me packing it all in. I went out for a 20 mile run, got to 15 minutes and sat down at the side of the road. I didn't want to run anymore. I stopped running, and just did physio, and took my saline everyday, although I'm only supposed to take it every second day. Guess what happened? I started getting worse, each week. I was heading for the right direction for IVs and hospital. Now if your telling me that physio is better then running, then explain the last part to me? I stopped running for the first time in my life, and started doing physio, pep mask etc, but I started to get worse by the week?? My lung function started to go down, and this is just after 6 weeks? This also proves my point about having a less aggressive form. I don't know why we have disagreements about this. It's not hard to see that exercise is better then physio. Iv never been on IVs and never been into hospital, and again, i don't have a mild case. Exercise needs to be an obsession from an early age. Never let anything set in because when it does it's too late. It can't just be done when we feel like we need to exercise. It needs to be done everyday, all the time. As hard as it sounds, it's true, and beneficial. This post has probably turned people against me, and this blog, but there seems to be a lot of tip toeing around CF and what people are actually doing in terms of there daily routines. Having a rebellious side, and giving out about how Doctors and nurses "nag" about taking medication etc. Why do people fight with them when they are helping you? Obviously, this doesn't apply to everyone. But I bet you the ones who do fight, don't leave a "normal" life. I hope I haven't offended people, as this wasn't my aim. Adios.


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  2. have to say Evan really good post and in truth Iam in the same camp as you lots of physio imposed on me as a kid which I feel goes a long way as to why my health is in relatively good condition still.On another note I wouldn't read to much into the type of genotype as Ive been told by various doctors that 2 people with the same gene can have varying strains of the condition eg one can produce less mucus(hence a more milder form) whereas others produce a lot more

    Have to say though your post was a bit of a eye opener and really cemented for me how important exercise is though like you know some people are just to much of an advanced stage early on for exercise to have any impact on.A particular case in point is a toddler who died of cf at 2 and the medical team couldn't do anything about as there was simply to much mucus which killed him.Though I take your point which is very valid about adherence to a routine eg exercise and keeping clear and well.From what I have read I feel there is a tendency for people with cf to be biased towards the moderate, severe side as opposed to the mild which goes in line with your excellent post

    keep well and keep up the hard work