<span id="result_box" class="long_text" lang="en"><span title="????????????!">Hello! <span title="? ????? ???????, ??????? ??? ?? ???? ?????, ?? ????? ?????????? ? ?????????????????!">I'm new here, thank you for this forum, it is very positive and life-affirming! <span title="? ???? ????????, ????? ???????, ??? ???? ???? ? ??, ??????? 50, 60 ? ???? 70 ???!">I was surprised when I saw that there are people with CF who are 50, 60 and even 70 years! <span title="??? 40, ? ? ???? ?????? ? ???????? ?????? "????????? ??", ?????????..">I'm 40, and in my country (i m from Russia) I am considered rather 'old man <span id="result_box" class="long_text" lang="en"><span title="? ???? ????????, ????? ???????, ??? ???? ???? ? ??, ??????? 50, 60 ? ???? 70 ???!">CF, "a rarity .. <span title="??? ????????? ??????? ? 38 ???, ? ? ???? ???? ????, ???? ? ??, ??? 32, ?? ????? ?? ??? ????? ?????? ?????????? ? ????? ?? ?????, ??? ??? ??????.">I was diagnosed at 38 years old, and I have a brother, too, with <span id="result_box" class="long_text" lang="en"><span title="? ???? ????????, ????? ???????, ??? ???? ???? ? ??, ??????? 50, 60 ? ???? 70 ???!">CF, he was 32, before that we suffered from bronchitis all my life and the doctors did not know what we treat. <span title="?? ????????? ??????????? ???? ????, ?????? ?????? ? ??????? ??, ??? ???????? ???.">We picked up antibiotics themselves, trying different and choosing the ones that helped us. <span title="(? ??? ????? ?????? ????????? ??? ??????? ???????).">(We can buy drugs without prescription of doctor.) <span title="? ??????? ????, ????? ??? ???? ???? ??????????? ???? ??? ????, ?? ?????? ?????? ? ?? ???????, ??? ? ???? ???? ???????????.">Last year, when my brother began to feel worse, he did an analysis and we saw that he had a Pseudomonas. <span title="????? ? ? ???????? - ??????????? ?????????? ??? ??, ? ? ?????? ????????? ???????????? ??????.">Then I thought - Pseudomonas typical <span id="result_box" class="long_text" lang="en"><span title="? ???? ????????, ????? ???????, ??? ???? ???? ? ??, ??????? 50, 60 ? ???? 70 ???!">CF, and I decided to test the genetic analysis. <span title="?????????,??? ? ??? ??.">It turned out that we have <span id="result_box" class="long_text" lang="en"><span title="? ???? ????????, ????? ???????, ??? ???? ???? ? ??, ??????? 50, 60 ? ???? 70 ???!">CF. <span title="??? ????? ???? ??????? <img src="i/expressions/face-icon-small-smile.gif" border="0">.">Here's our story so <img src="i/expressions/face-icon-small-smile.gif" border="0">.<span title="????? ??? ??????????? ? ?? ????? ????????? ??????????? ???????, ???? ???????? ?????????.">When everything cleared up and we began to accept special treatment, our sostonie seize. <span title="??????????? ? ???????, ? ?????? ?? ???? ??????? ? ????? ?????? ? ????? ? ?? ? ? ????????? ?? ????? ???????, ??????? ? ????????? ??????? ???????,????? ???? ????? ??? ?????????.">Diagnosis and treatment, and knowledge about this disease in our country, people with CF and their parents are not very good, the treatment of difficult in small towns, doctors know little this pathology. <span title="??????? ? ?????? ??????? ?????????????? ???? ??? ??????????? ?????????, ?? ??????? ?? ????????? ????????? ? ???????, ?? ?????????, ?? ????????????? ? ??.">So I decided to make an information site for patients' organizations, which we publish materials about the treatment of infections, the studies and so on. <span title="?????? ?? ???????? ????????? ?????? ????? ????????? ????? ??? ?????????? ??? ????????? ? ???,??? ????????? ????????? ????????????? (? ?? ???????,??? ?? ????????? ??? ??????? ????????? - ??????????? ??? ????????? ?????,??????? ???????? ???????? ??????).">Now we have received several requests to find a training video or a manual for parents on how to properly carry out kinesitherapy (I'm not sure that in English it is spelled correctly - Training for young children, which helps clear the lungs). <span title="? ??????????? ????? ??????,?? ?? ????? ??????????.">I looked through many sites, but did not find the information. <span title="????? ???? ?? ?????? ???? ? ???????? ????????? ?? ????? ??????? ?????? ????? ?????????.">Maybe you know a site with such a video? It would be very helpful to many of our parents.<span title="???????!">Thank you!
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Kinesitherapy - how?
- Thread starter mariakom
- Start date
<span id="result_box" class="long_text" lang="en"><span title="????????????!">Hello! <span title="? ????? ???????, ??????? ??? ?? ???? ?????, ?? ????? ?????????? ? ?????????????????!">I'm new here, thank you for this forum, it is very positive and life-affirming! <span title="? ???? ????????, ????? ???????, ??? ???? ???? ? ??, ??????? 50, 60 ? ???? 70 ???!">I was surprised when I saw that there are people with CF who are 50, 60 and even 70 years! <span title="??? 40, ? ? ???? ?????? ? ???????? ?????? "????????? ??", ?????????..">I'm 40, and in my country (i m from Russia) I am considered rather 'old man <span id="result_box" class="long_text" lang="en"><span title="? ???? ????????, ????? ???????, ??? ???? ???? ? ??, ??????? 50, 60 ? ???? 70 ???!">CF, "a rarity .. <span title="??? ????????? ??????? ? 38 ???, ? ? ???? ???? ????, ???? ? ??, ??? 32, ?? ????? ?? ??? ????? ?????? ?????????? ? ????? ?? ?????, ??? ??? ??????.">I was diagnosed at 38 years old, and I have a brother, too, with <span id="result_box" class="long_text" lang="en"><span title="? ???? ????????, ????? ???????, ??? ???? ???? ? ??, ??????? 50, 60 ? ???? 70 ???!">CF, he was 32, before that we suffered from bronchitis all my life and the doctors did not know what we treat. <span title="?? ????????? ??????????? ???? ????, ?????? ?????? ? ??????? ??, ??? ???????? ???.">We picked up antibiotics themselves, trying different and choosing the ones that helped us. <span title="(? ??? ????? ?????? ????????? ??? ??????? ???????).">(We can buy drugs without prescription of doctor.) <span title="? ??????? ????, ????? ??? ???? ???? ??????????? ???? ??? ????, ?? ?????? ?????? ? ?? ???????, ??? ? ???? ???? ???????????.">Last year, when my brother began to feel worse, he did an analysis and we saw that he had a Pseudomonas. <span title="????? ? ? ???????? - ??????????? ?????????? ??? ??, ? ? ?????? ????????? ???????????? ??????.">Then I thought - Pseudomonas typical <span id="result_box" class="long_text" lang="en"><span title="? ???? ????????, ????? ???????, ??? ???? ???? ? ??, ??????? 50, 60 ? ???? 70 ???!">CF, and I decided to test the genetic analysis. <span title="?????????,??? ? ??? ??.">It turned out that we have <span id="result_box" class="long_text" lang="en"><span title="? ???? ????????, ????? ???????, ??? ???? ???? ? ??, ??????? 50, 60 ? ???? 70 ???!">CF. <span title="??? ????? ???? ??????? <img src="i/expressions/face-icon-small-smile.gif" border="0">.">Here's our story so <img src="i/expressions/face-icon-small-smile.gif" border="0">.<span title="????? ??? ??????????? ? ?? ????? ????????? ??????????? ???????, ???? ???????? ?????????.">When everything cleared up and we began to accept special treatment, our sostonie seize. <span title="??????????? ? ???????, ? ?????? ?? ???? ??????? ? ????? ?????? ? ????? ? ?? ? ? ????????? ?? ????? ???????, ??????? ? ????????? ??????? ???????,????? ???? ????? ??? ?????????.">Diagnosis and treatment, and knowledge about this disease in our country, people with CF and their parents are not very good, the treatment of difficult in small towns, doctors know little this pathology. <span title="??????? ? ?????? ??????? ?????????????? ???? ??? ??????????? ?????????, ?? ??????? ?? ????????? ????????? ? ???????, ?? ?????????, ?? ????????????? ? ??.">So I decided to make an information site for patients' organizations, which we publish materials about the treatment of infections, the studies and so on. <span title="?????? ?? ???????? ????????? ?????? ????? ????????? ????? ??? ?????????? ??? ????????? ? ???,??? ????????? ????????? ????????????? (? ?? ???????,??? ?? ????????? ??? ??????? ????????? - ??????????? ??? ????????? ?????,??????? ???????? ???????? ??????).">Now we have received several requests to find a training video or a manual for parents on how to properly carry out kinesitherapy (I'm not sure that in English it is spelled correctly - Training for young children, which helps clear the lungs). <span title="? ??????????? ????? ??????,?? ?? ????? ??????????.">I looked through many sites, but did not find the information. <span title="????? ???? ?? ?????? ???? ? ???????? ????????? ?? ????? ??????? ?????? ????? ?????????.">Maybe you know a site with such a video? It would be very helpful to many of our parents.<span title="???????!">Thank you!
I love the Russian language, sadly I have not had the time to study it much. I think Kinesitherapy better translates into physiotherapy in English. To that extent here are some sites that might help. A lot of kids and adults here use a pneumatic vest (http://www.thevest.com), which allows for chest physiotherapy without another person to perform it. I'm not aware if this is available in Russia. Here are some written instructions on now to perform chest physiotherapy (http://www.uwhealth.org/uw-cystic-fibrosis-center/cystic-fibrosis-cf-treatment-manual-chest-physiotherapy/13791) You can also search YouTube or Google videos for "chest physiotherapy" or "CPT" and perhaps get better results than using kinesitherapy. I would be very interested in seeing your site and perhaps even contribute information to it, if you would like. Jonathan
I love the Russian language, sadly I have not had the time to study it much. I think Kinesitherapy better translates into physiotherapy in English. To that extent here are some sites that might help. A lot of kids and adults here use a pneumatic vest (http://www.thevest.com), which allows for chest physiotherapy without another person to perform it. I'm not aware if this is available in Russia. Here are some written instructions on now to perform chest physiotherapy (http://www.uwhealth.org/uw-cystic-fibrosis-center/cystic-fibrosis-cf-treatment-manual-chest-physiotherapy/13791) You can also search YouTube or Google videos for "chest physiotherapy" or "CPT" and perhaps get better results than using kinesitherapy. I would be very interested in seeing your site and perhaps even contribute information to it, if you would like. Jonathan
E
ElenaFalcon
Guest
Hi, i'm from Russia and will be happy to help with the website and any info on the treatment and news.Russian internet is full of outdated information on cf and makes parents and patientscrazy about prognosis and longevity. It is true here - each yearyoung teenagers die withoutspecial treatment and care.Vest is available in Russia - it is exteremely expensive (approx. USD13'500) and not provided by the state insurance. You're 'lucky' being diagnosed later in life and hope you and your brother are doing well now.
E
ElenaFalcon
Guest
Hi, i'm from Russia and will be happy to help with the website and any info on the treatment and news.Russian internet is full of outdated information on cf and makes parents and patientscrazy about prognosis and longevity. It is true here - each yearyoung teenagers die withoutspecial treatment and care.Vest is available in Russia - it is exteremely expensive (approx. USD13'500) and not provided by the state insurance. You're 'lucky' being diagnosed later in life and hope you and your brother are doing well now.
Hi
Thanks for your help, Jonathan, I have found the right video <img src="i/expressions/face-icon-small-smile.gif" border="0">
Our site is http://www.cfmo.ru and we'll be very glad of any information that will help our patients and their parents! We'll ask <img src="i/expressions/face-icon-small-smile.gif" border="0">
Elena, hi,
Yes, that's right wrote on the situation in Russia. I think that the lack of current information, poor patient education and parent causes great harm to patients with CF. We want to change this situation, the easier to do it together <img src="i/expressions/face-icon-small-smile.gif" border="0">
Thanks for your help, Jonathan, I have found the right video <img src="i/expressions/face-icon-small-smile.gif" border="0">
Our site is http://www.cfmo.ru and we'll be very glad of any information that will help our patients and their parents! We'll ask <img src="i/expressions/face-icon-small-smile.gif" border="0">
Elena, hi,
Yes, that's right wrote on the situation in Russia. I think that the lack of current information, poor patient education and parent causes great harm to patients with CF. We want to change this situation, the easier to do it together <img src="i/expressions/face-icon-small-smile.gif" border="0">
Hi
Thanks for your help, Jonathan, I have found the right video <img src="i/expressions/face-icon-small-smile.gif" border="0">
Our site is http://www.cfmo.ru and we'll be very glad of any information that will help our patients and their parents! We'll ask <img src="i/expressions/face-icon-small-smile.gif" border="0">
Elena, hi,
Yes, that's right wrote on the situation in Russia. I think that the lack of current information, poor patient education and parent causes great harm to patients with CF. We want to change this situation, the easier to do it together <img src="i/expressions/face-icon-small-smile.gif" border="0">
Thanks for your help, Jonathan, I have found the right video <img src="i/expressions/face-icon-small-smile.gif" border="0">
Our site is http://www.cfmo.ru and we'll be very glad of any information that will help our patients and their parents! We'll ask <img src="i/expressions/face-icon-small-smile.gif" border="0">
Elena, hi,
Yes, that's right wrote on the situation in Russia. I think that the lack of current information, poor patient education and parent causes great harm to patients with CF. We want to change this situation, the easier to do it together <img src="i/expressions/face-icon-small-smile.gif" border="0">
Hi there, i am russian too but i live in France, my dd has CF. We do not have vest here but a different kind of physio therapy ( it is called kinesitherapy) than in the US and it is very effective when done properly. i will try to find a video ffor you (if you understand french i can probably find written instructions as well). let me know
Hi there, i am russian too but i live in France, my dd has CF. We do not have vest here but a different kind of physio therapy ( it is called kinesitherapy) than in the US and it is very effective when done properly. i will try to find a video ffor you (if you understand french i can probably find written instructions as well). let me know
Hi, ymikhale <img src="i/expressions/face-icon-small-smile.gif" border="0"> Je comprends un peu de la langue française
I think I can translate the instructions from the french, translate easier than to say, thank you! <img src="i/expressions/face-icon-small-smile.gif" border="0"> I know that in France the treatment of CF at a good level, many of our patients dream to move there ..
I think I can translate the instructions from the french, translate easier than to say, thank you! <img src="i/expressions/face-icon-small-smile.gif" border="0"> I know that in France the treatment of CF at a good level, many of our patients dream to move there ..
Hi, ymikhale <img src="i/expressions/face-icon-small-smile.gif" border="0"> Je comprends un peu de la langue française
I think I can translate the instructions from the french, translate easier than to say, thank you! <img src="i/expressions/face-icon-small-smile.gif" border="0"> I know that in France the treatment of CF at a good level, many of our patients dream to move there ..
I think I can translate the instructions from the french, translate easier than to say, thank you! <img src="i/expressions/face-icon-small-smile.gif" border="0"> I know that in France the treatment of CF at a good level, many of our patients dream to move there ..