<i>I could not help but notice that a lot of the questions that get posted here have to do with everyday issues faced by family members and people with CF.
Do you think it would be a good idea to compile a list of definitions of words and phrases commonly used in the discussion and treatment of CF and post it somewhere to make it easier for people unfamiliar with such things to become familiar?
It would be sort of a dictionary that listed and explained things like what a certain drug is for and it might also have a brief summery of potential side effects, or what a particular bug is and the common types of treatments for it. It could also contain words, phrases and code words that are commonly used by Doctors and other CF professionals when discussing a particular condition or problem.
My idea is really all about creating easy access to the culture of CF that we all live in, in order to enable people that don't quite understand something, to find their way more easily.
I know that I have left a clinic visit more than once scratching my head and thinking to myself, "now what was that all about"? It often seems like there is not enough time to ask all the questions I have about my treatment until sometime down the road, when it may be a bit late. I may even be a little hesitant to ask a question thinking that the Doctor is too busy at the moment. The typical quick clinic visit has left me with my head spinning at times.
The idea is based on a collection of definitions of words and phrases that was put together several years ago to explain internet and computer terminology. I found it quite helpful.
So what do you think? I am not sure how it would all work or where it could be compiled and accessed. Thats why I need your imput.
Sincerely:
PeterC
57 m/cf </i>
HERE'S AN UPDATE, I'M HOPING TO GET INPUT FROM EVERYONE ON THE SITE!!!!
Peter and others, I'm starting to work on this now... great idea by the way.
Looking for some feedback, input as to what everyone thinks should be included in this dictionary/interactive FAQ.
I'm trying to think back to when I was new to CF and all the things that I just didn't understand. I'm not making too much progress though.
I'll be reviewing some of the posts from parents of children who just got diagnosed, CFers who just got diagnosed, other relatives who are new to the CF world...seeing what main questions seem to be repeated all the time.
I would love input from everyone on the site as to what they think should be included and I'll put it there!
Thanks in advance for the help everyone!
<b>I posted this back at the End of april in the families and adults section, and many pepole added some great things to cover in the dictionary/faq. I cannot seen to locate this old thread in the adult forum... I've contacted bill to see if he can search further back, but in the meantime, if people could once again (please) post common definitions that you didn't know when you were new to CF, questions you had, questions that you see newbies asking a lot...
Many had a LOT of great ideas, LisaV, you gave me a very thorough list and I wanted to use a lot of what you posted. Do you think you might be able to list those again when you have time?
Also, any new people/families/parents/signifigant others/friends to CF, if you are reading this, what questions do you have? Are there words or phrases you see used on here a lot that you don't understand? If so, please make a list and post it or you can email me at division902@hotmail.com
Thanks everyone, I'm sorry to ask this again but I just can't find that old post...</b>
Do you think it would be a good idea to compile a list of definitions of words and phrases commonly used in the discussion and treatment of CF and post it somewhere to make it easier for people unfamiliar with such things to become familiar?
It would be sort of a dictionary that listed and explained things like what a certain drug is for and it might also have a brief summery of potential side effects, or what a particular bug is and the common types of treatments for it. It could also contain words, phrases and code words that are commonly used by Doctors and other CF professionals when discussing a particular condition or problem.
My idea is really all about creating easy access to the culture of CF that we all live in, in order to enable people that don't quite understand something, to find their way more easily.
I know that I have left a clinic visit more than once scratching my head and thinking to myself, "now what was that all about"? It often seems like there is not enough time to ask all the questions I have about my treatment until sometime down the road, when it may be a bit late. I may even be a little hesitant to ask a question thinking that the Doctor is too busy at the moment. The typical quick clinic visit has left me with my head spinning at times.
The idea is based on a collection of definitions of words and phrases that was put together several years ago to explain internet and computer terminology. I found it quite helpful.
So what do you think? I am not sure how it would all work or where it could be compiled and accessed. Thats why I need your imput.
Sincerely:
PeterC
57 m/cf </i>
HERE'S AN UPDATE, I'M HOPING TO GET INPUT FROM EVERYONE ON THE SITE!!!!
Peter and others, I'm starting to work on this now... great idea by the way.
Looking for some feedback, input as to what everyone thinks should be included in this dictionary/interactive FAQ.
I'm trying to think back to when I was new to CF and all the things that I just didn't understand. I'm not making too much progress though.
I'll be reviewing some of the posts from parents of children who just got diagnosed, CFers who just got diagnosed, other relatives who are new to the CF world...seeing what main questions seem to be repeated all the time.
I would love input from everyone on the site as to what they think should be included and I'll put it there!
Thanks in advance for the help everyone!
<b>I posted this back at the End of april in the families and adults section, and many pepole added some great things to cover in the dictionary/faq. I cannot seen to locate this old thread in the adult forum... I've contacted bill to see if he can search further back, but in the meantime, if people could once again (please) post common definitions that you didn't know when you were new to CF, questions you had, questions that you see newbies asking a lot...
Many had a LOT of great ideas, LisaV, you gave me a very thorough list and I wanted to use a lot of what you posted. Do you think you might be able to list those again when you have time?
Also, any new people/families/parents/signifigant others/friends to CF, if you are reading this, what questions do you have? Are there words or phrases you see used on here a lot that you don't understand? If so, please make a list and post it or you can email me at division902@hotmail.com
Thanks everyone, I'm sorry to ask this again but I just can't find that old post...</b>