x

N

NoExcuses

New member
not doing CPTs

<i>Originally posted by: <b>littledebbie</b></i>

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>amy</b></i>

Hey my parents didn't miss a beat and my health sucks should I go give them a beat down? I mean it should go both ways right? The logic eludes me.

</end quote></div> Whoa there. Because your parents helped you, you're probably much better off than if they didn't. So definitely go give them a big hug too.... you have probably lived longer than you would have if your parents hadn't "missed a beat" as you said.

<div class="FTQUOTE"><begin quote>Since my PFT's are crap does this mean I can't talk about taking care of ourselves. </end quote></div>

All I was saying is that I'm healthier than I would have been if my parents didn't do CPT with me. That's all. I'm not comparing myself to other CFers. I'm comparing myself to my theoretical self. CF varies widely, like you said. But I know for sure if I didn't do meds that I would be much worse off than I am today. I've gone days without meds and I've seen what I'm like. Not pretty. And I still stand by the fact that it sounds like you're healthier than u would have been and you have lived longer than you would have as a result of your parents helping you out as a kid. That's all I'm saying.

<div class="FTQUOTE"><begin quote>

Amy: "Infection and sputum never had a chance in my young lungs...beacuse my parents did preventative therapy like CPT every day and every night."

Do you realize how arrogant that sounds? And how possibly insulting that could be to others?</end quote></div>


It's stating a fact. There are very few differences between the CF patients of today and the CF patients of 40 year ago. Meds is one of them. This includes CPT.
 
N

NoExcuses

New member
not doing CPTs

<i>Originally posted by: <b>littledebbie</b></i>

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>amy</b></i>

Hey my parents didn't miss a beat and my health sucks should I go give them a beat down? I mean it should go both ways right? The logic eludes me.

</end quote></div> Whoa there. Because your parents helped you, you're probably much better off than if they didn't. So definitely go give them a big hug too.... you have probably lived longer than you would have if your parents hadn't "missed a beat" as you said.

<div class="FTQUOTE"><begin quote>Since my PFT's are crap does this mean I can't talk about taking care of ourselves. </end quote></div>

All I was saying is that I'm healthier than I would have been if my parents didn't do CPT with me. That's all. I'm not comparing myself to other CFers. I'm comparing myself to my theoretical self. CF varies widely, like you said. But I know for sure if I didn't do meds that I would be much worse off than I am today. I've gone days without meds and I've seen what I'm like. Not pretty. And I still stand by the fact that it sounds like you're healthier than u would have been and you have lived longer than you would have as a result of your parents helping you out as a kid. That's all I'm saying.

<div class="FTQUOTE"><begin quote>

Amy: "Infection and sputum never had a chance in my young lungs...beacuse my parents did preventative therapy like CPT every day and every night."

Do you realize how arrogant that sounds? And how possibly insulting that could be to others?</end quote></div>


It's stating a fact. There are very few differences between the CF patients of today and the CF patients of 40 year ago. Meds is one of them. This includes CPT.
 
K

kybert

New member
not doing CPTs

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Anns</b></i>

I'm just not tying him down to a machine that is not dong anything
for him. What is the vest preventing? he never coughs
and there's no mucus to dislodge. He has had both a CT Scan
and a bronc and they were beautiful and doctors said he they would
not have known he had CF had they not know he did.
I'm not saying I'm against them and if they work for others
than that is great, but people can preach to me about them being
the only option but I don't buy it. There are TOO many
kids still getting sick using them religiously so what are
they preventing? . If or whenf, I know there will come a day,
he has some mucus to bring up, I will have no problem doing CPT to
get rid of it. The mind is a powerful thing, and I guess I
want my kid to be as normal and possible and not think he's sick
and feel sick. I do a lot of preventive care. He has
NEVER been around second hand smoke a day in his life, he takes his
meds regularly and w/o any issues, and fitness is the number two
priority in our life after God. It even comes before his school
work. Some may think I have my priorities mixed up, but if he
is going to do well in school, then he needs to be healthy enough
first to go to school. He has never missed a day of school
because of CF. Baseball is his favorite sport, but is
too slow to get much benefit from so he also plays soccer during
baseball season for conditioning. Almost daily he is jumping
on the trampoline and three times a week we go to the track and he
runs a mile w/o stopping in about 8mins at 9 years of age. To
me, this is better than any machine can do for him and is working
for him right now, but I realize it does not work for everyone.
If someone can not be this physically active, then by all
means the vest is the way to go, but I don't' think anyone can
argue successfully that some artificial device is going to do a
better job than your body itself being exerted. That s like
tell a bicyclist instead of riding their bike, to get on a machine
that pedals for them and see how much befit they get from it.
It doesn't compare. </end quote></div>


AMEN! love the bike comparison. honestly, that amount of exercise would be by far superior to traditional physio anyday. im sure most physiotherapists would even agree with me on that one. as i said before, physio takes many shapes and forms and exercise is one of them. just because it doesnt involve a machine or thumping it doesnt mean its not working. you are still working those lungs, you are still huffing and coughing, you are still taking deep breaths and it is more beneficial for your body overall. not all forms are going to work for everyone. thats like saying everyone should take one brand and strength of enzyme, or we all take the exact same antibiotic. cf doesnt work that way! we all know that so why are people saying "you must do this and this only". as debbie said, good for you for finding a method of physio that works and which still gives your son freedom. keep it up for as long as possible.

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>amy</b></i>Infection and sputum never had a chance in my young lungs...beacuse my parents did preventative therapy like CPT every day and every night. </end quote></div>

seriously, come on amy, you know better than that. almost all of us had preventative care but this doesnt determine how ones cf is going to go. someone could do physio 24/7 and it still wont prevent infection. when i was very young i had physio twice a day as there were homecare workers to do this. when that stopped, i rarely had it. my health did not change. it only got better. why? because i was so darn active. i dont think physio could have made my lung function any better than it was. when i did start to go downhill, it was because of the massive amounts of colds, flus and viruses going around in highscool and the stress on the body from puberty. it had nothing to do with not doing traditional physio! there was never anything to cough up anyway and i have a million physios to vouch for that. *physio looks at watch, 30 minutes has passed* "well gee kylie ive been making you do active cycle AND ive pounded you but i just cant get anything up and im making things worse. im going to stop now". yeah i heard that one alot but they had to keep doing it because it was 'doctors orders'. thats what everyone is taught. thats what the ancient 'cf book' says.

someone send me to sweden ffs.
 
K

kybert

New member
not doing CPTs

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Anns</b></i>

I'm just not tying him down to a machine that is not dong anything
for him. What is the vest preventing? he never coughs
and there's no mucus to dislodge. He has had both a CT Scan
and a bronc and they were beautiful and doctors said he they would
not have known he had CF had they not know he did.
I'm not saying I'm against them and if they work for others
than that is great, but people can preach to me about them being
the only option but I don't buy it. There are TOO many
kids still getting sick using them religiously so what are
they preventing? . If or whenf, I know there will come a day,
he has some mucus to bring up, I will have no problem doing CPT to
get rid of it. The mind is a powerful thing, and I guess I
want my kid to be as normal and possible and not think he's sick
and feel sick. I do a lot of preventive care. He has
NEVER been around second hand smoke a day in his life, he takes his
meds regularly and w/o any issues, and fitness is the number two
priority in our life after God. It even comes before his school
work. Some may think I have my priorities mixed up, but if he
is going to do well in school, then he needs to be healthy enough
first to go to school. He has never missed a day of school
because of CF. Baseball is his favorite sport, but is
too slow to get much benefit from so he also plays soccer during
baseball season for conditioning. Almost daily he is jumping
on the trampoline and three times a week we go to the track and he
runs a mile w/o stopping in about 8mins at 9 years of age. To
me, this is better than any machine can do for him and is working
for him right now, but I realize it does not work for everyone.
If someone can not be this physically active, then by all
means the vest is the way to go, but I don't' think anyone can
argue successfully that some artificial device is going to do a
better job than your body itself being exerted. That s like
tell a bicyclist instead of riding their bike, to get on a machine
that pedals for them and see how much befit they get from it.
It doesn't compare. </end quote></div>


AMEN! love the bike comparison. honestly, that amount of exercise would be by far superior to traditional physio anyday. im sure most physiotherapists would even agree with me on that one. as i said before, physio takes many shapes and forms and exercise is one of them. just because it doesnt involve a machine or thumping it doesnt mean its not working. you are still working those lungs, you are still huffing and coughing, you are still taking deep breaths and it is more beneficial for your body overall. not all forms are going to work for everyone. thats like saying everyone should take one brand and strength of enzyme, or we all take the exact same antibiotic. cf doesnt work that way! we all know that so why are people saying "you must do this and this only". as debbie said, good for you for finding a method of physio that works and which still gives your son freedom. keep it up for as long as possible.

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>amy</b></i>Infection and sputum never had a chance in my young lungs...beacuse my parents did preventative therapy like CPT every day and every night. </end quote></div>

seriously, come on amy, you know better than that. almost all of us had preventative care but this doesnt determine how ones cf is going to go. someone could do physio 24/7 and it still wont prevent infection. when i was very young i had physio twice a day as there were homecare workers to do this. when that stopped, i rarely had it. my health did not change. it only got better. why? because i was so darn active. i dont think physio could have made my lung function any better than it was. when i did start to go downhill, it was because of the massive amounts of colds, flus and viruses going around in highscool and the stress on the body from puberty. it had nothing to do with not doing traditional physio! there was never anything to cough up anyway and i have a million physios to vouch for that. *physio looks at watch, 30 minutes has passed* "well gee kylie ive been making you do active cycle AND ive pounded you but i just cant get anything up and im making things worse. im going to stop now". yeah i heard that one alot but they had to keep doing it because it was 'doctors orders'. thats what everyone is taught. thats what the ancient 'cf book' says.

someone send me to sweden ffs.
 
K

kybert

New member
not doing CPTs

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Anns</b></i>

I'm just not tying him down to a machine that is not dong anything
for him. What is the vest preventing? he never coughs
and there's no mucus to dislodge. He has had both a CT Scan
and a bronc and they were beautiful and doctors said he they would
not have known he had CF had they not know he did.
I'm not saying I'm against them and if they work for others
than that is great, but people can preach to me about them being
the only option but I don't buy it. There are TOO many
kids still getting sick using them religiously so what are
they preventing? . If or whenf, I know there will come a day,
he has some mucus to bring up, I will have no problem doing CPT to
get rid of it. The mind is a powerful thing, and I guess I
want my kid to be as normal and possible and not think he's sick
and feel sick. I do a lot of preventive care. He has
NEVER been around second hand smoke a day in his life, he takes his
meds regularly and w/o any issues, and fitness is the number two
priority in our life after God. It even comes before his school
work. Some may think I have my priorities mixed up, but if he
is going to do well in school, then he needs to be healthy enough
first to go to school. He has never missed a day of school
because of CF. Baseball is his favorite sport, but is
too slow to get much benefit from so he also plays soccer during
baseball season for conditioning. Almost daily he is jumping
on the trampoline and three times a week we go to the track and he
runs a mile w/o stopping in about 8mins at 9 years of age. To
me, this is better than any machine can do for him and is working
for him right now, but I realize it does not work for everyone.
If someone can not be this physically active, then by all
means the vest is the way to go, but I don't' think anyone can
argue successfully that some artificial device is going to do a
better job than your body itself being exerted. That s like
tell a bicyclist instead of riding their bike, to get on a machine
that pedals for them and see how much befit they get from it.
It doesn't compare. </end quote></div>


AMEN! love the bike comparison. honestly, that amount of exercise would be by far superior to traditional physio anyday. im sure most physiotherapists would even agree with me on that one. as i said before, physio takes many shapes and forms and exercise is one of them. just because it doesnt involve a machine or thumping it doesnt mean its not working. you are still working those lungs, you are still huffing and coughing, you are still taking deep breaths and it is more beneficial for your body overall. not all forms are going to work for everyone. thats like saying everyone should take one brand and strength of enzyme, or we all take the exact same antibiotic. cf doesnt work that way! we all know that so why are people saying "you must do this and this only". as debbie said, good for you for finding a method of physio that works and which still gives your son freedom. keep it up for as long as possible.

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>amy</b></i>Infection and sputum never had a chance in my young lungs...beacuse my parents did preventative therapy like CPT every day and every night. </end quote></div>

seriously, come on amy, you know better than that. almost all of us had preventative care but this doesnt determine how ones cf is going to go. someone could do physio 24/7 and it still wont prevent infection. when i was very young i had physio twice a day as there were homecare workers to do this. when that stopped, i rarely had it. my health did not change. it only got better. why? because i was so darn active. i dont think physio could have made my lung function any better than it was. when i did start to go downhill, it was because of the massive amounts of colds, flus and viruses going around in highscool and the stress on the body from puberty. it had nothing to do with not doing traditional physio! there was never anything to cough up anyway and i have a million physios to vouch for that. *physio looks at watch, 30 minutes has passed* "well gee kylie ive been making you do active cycle AND ive pounded you but i just cant get anything up and im making things worse. im going to stop now". yeah i heard that one alot but they had to keep doing it because it was 'doctors orders'. thats what everyone is taught. thats what the ancient 'cf book' says.

someone send me to sweden ffs.
 
J

JazzysMom

New member
not doing CPTs

There is a place for everything no question about it. I believe its the combo of things (meds, CPT & exercise) that gives a CFer full benefit. However; there are times that doing ALL of those is not feasable. Argue that point all you want...reality is that its not always feasable. I do know that my doctor told me last year they have done all they can do medically to get my lungs in tip top shape....the rest is up to me by exercising. If the rest of my body is in shape it helps my lungs function better. No doubt. I personally like the feeling of doing CPT. Maybe because that is what I am use to. Maybe because it does alot for me. Does it do enough? I wouldnt know until I exhausted an exercise program. I also believe exercise in general is good.....as it is with any person CF or not. As to what type of exercise I think is where the true airway benefits lies?
 
J

JazzysMom

New member
not doing CPTs

There is a place for everything no question about it. I believe its the combo of things (meds, CPT & exercise) that gives a CFer full benefit. However; there are times that doing ALL of those is not feasable. Argue that point all you want...reality is that its not always feasable. I do know that my doctor told me last year they have done all they can do medically to get my lungs in tip top shape....the rest is up to me by exercising. If the rest of my body is in shape it helps my lungs function better. No doubt. I personally like the feeling of doing CPT. Maybe because that is what I am use to. Maybe because it does alot for me. Does it do enough? I wouldnt know until I exhausted an exercise program. I also believe exercise in general is good.....as it is with any person CF or not. As to what type of exercise I think is where the true airway benefits lies?
 
J

JazzysMom

New member
not doing CPTs

There is a place for everything no question about it. I believe its the combo of things (meds, CPT & exercise) that gives a CFer full benefit. However; there are times that doing ALL of those is not feasable. Argue that point all you want...reality is that its not always feasable. I do know that my doctor told me last year they have done all they can do medically to get my lungs in tip top shape....the rest is up to me by exercising. If the rest of my body is in shape it helps my lungs function better. No doubt. I personally like the feeling of doing CPT. Maybe because that is what I am use to. Maybe because it does alot for me. Does it do enough? I wouldnt know until I exhausted an exercise program. I also believe exercise in general is good.....as it is with any person CF or not. As to what type of exercise I think is where the true airway benefits lies?
 
A

anonymous

New member
not doing CPTs

Lori,

I think your original questions was a valid one and obviously you had your mind made up prior to the post that you were going to continue to do what you do anyway. That said I think it is EXTREMELY RUDE of you to say that CPT is the lazy man's way and extremely disheartening to those of us parents who are following doctors ordered and working hard to get the treatments all in during the day along with school, play and yes, of course EXERCISE! No one who has replied has once said that excercise is not good for CFers! I believe that it is and all CFers should exercise daily along with doing CPT/Vest to maintain optimal health! I truly took offense to that statement in your last post!

As for Amy's doctors telling her that her parents religiously doing her treatments and CPT helping her be so healthy, I have no doubt in my mind that it is not "hogwash" and was really said to her. You have no right to say it is hogwash unless you have sat in on her doctor appointments and know what her doctors have and have not said to her.

I am sorry your post just really hit me the wrong way! First you come on here and ask a legitimate question and then want to attack people who have opposing views! You should have expected some negative when you made the original post.
 
A

anonymous

New member
not doing CPTs

Lori,

I think your original questions was a valid one and obviously you had your mind made up prior to the post that you were going to continue to do what you do anyway. That said I think it is EXTREMELY RUDE of you to say that CPT is the lazy man's way and extremely disheartening to those of us parents who are following doctors ordered and working hard to get the treatments all in during the day along with school, play and yes, of course EXERCISE! No one who has replied has once said that excercise is not good for CFers! I believe that it is and all CFers should exercise daily along with doing CPT/Vest to maintain optimal health! I truly took offense to that statement in your last post!

As for Amy's doctors telling her that her parents religiously doing her treatments and CPT helping her be so healthy, I have no doubt in my mind that it is not "hogwash" and was really said to her. You have no right to say it is hogwash unless you have sat in on her doctor appointments and know what her doctors have and have not said to her.

I am sorry your post just really hit me the wrong way! First you come on here and ask a legitimate question and then want to attack people who have opposing views! You should have expected some negative when you made the original post.
 
A

anonymous

New member
not doing CPTs

Lori,

I think your original questions was a valid one and obviously you had your mind made up prior to the post that you were going to continue to do what you do anyway. That said I think it is EXTREMELY RUDE of you to say that CPT is the lazy man's way and extremely disheartening to those of us parents who are following doctors ordered and working hard to get the treatments all in during the day along with school, play and yes, of course EXERCISE! No one who has replied has once said that excercise is not good for CFers! I believe that it is and all CFers should exercise daily along with doing CPT/Vest to maintain optimal health! I truly took offense to that statement in your last post!

As for Amy's doctors telling her that her parents religiously doing her treatments and CPT helping her be so healthy, I have no doubt in my mind that it is not "hogwash" and was really said to her. You have no right to say it is hogwash unless you have sat in on her doctor appointments and know what her doctors have and have not said to her.

I am sorry your post just really hit me the wrong way! First you come on here and ask a legitimate question and then want to attack people who have opposing views! You should have expected some negative when you made the original post.
 
J

JazzysMom

New member
not doing CPTs

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Anns</b></i>

ANNONYMOUS????</end quote></div>

I assume you are ?? why they posted as annonymous. This function is for those who choose to not register or for some who cant log on (at work etc), but wish to post. The administrators of the forum have turned it on/off periodically due to problems incurred from it. I thought it was off, but evidentally not.
 
J

JazzysMom

New member
not doing CPTs

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Anns</b></i>

ANNONYMOUS????</end quote></div>

I assume you are ?? why they posted as annonymous. This function is for those who choose to not register or for some who cant log on (at work etc), but wish to post. The administrators of the forum have turned it on/off periodically due to problems incurred from it. I thought it was off, but evidentally not.
 
J

JazzysMom

New member
not doing CPTs

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Anns</b></i>

ANNONYMOUS????</end quote></div>

I assume you are ?? why they posted as annonymous. This function is for those who choose to not register or for some who cant log on (at work etc), but wish to post. The administrators of the forum have turned it on/off periodically due to problems incurred from it. I thought it was off, but evidentally not.
 
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