Re: Re: PF book questionnaire [1 Attachment]

[Guest guest]

Cees, I think we all had difficulty hearing well during the chat. With my hearing, I need to see the lips.

When I had my first hearing test, the technician surprised me when told me that I was excellent at reading

lips. I had no idea.

I agree with Cees that our group should first reach a consenus before it goes before the group members.

Hopefully we will have our hot line set up soon. Jack79/IPF - UIP/dx06/05 Maine

To: mbmurtha@...; breathe-support ; Jack Marshall ; ceesnews@...Sent: Sat, November 21, 2009 7:13:46 AMSubject: Re: PF book questionnaire [1 Attachment]

Dear Barbara, Beth, Leanne and Jack:

I'm so impressed you got this questionnaire done so fast, Barbara. Is it because you had to cancel your day of PFTs, etc.? I sure hope you & your husband are starting to feel better.

Great job! Some really good questions. I re-attached the questionnaire w/my comments, additional questions, etc., in red for everyone to read & think about. Some were just minor proofreading things that the editor in me couldn't stop myself from fixing. But I also suggested some new questions that I think are important or to clarify some of the ones you included. I only ask that all of you consider them. I was kinda curious though why you already put it on the board before getting any of our comments.

I'm glad we all got to talk the other day, but I had a really hard time figuring out what was going on. I thought maybe it was just me until Stefani posted these comments about the Thurs. chat.

" it gets hard to tell who is speaking and what is said. Gets interrupted with squeaks and whistles."

My experience was that your voices kept cutting out, so I was only getting parts of sentences & had to try to splice together your meaning in my head while the rest of you apparently were continuing with the conversation. I would speak up during some of the longer blank times only to find out that I apparently was interrupting someone. Poor Barbara, you sounded really upset, so I'm guessing I must have cut you off more than once. I'm so sorry. It wasn't intentional.

At least once, I kept hearing voices but no actual words were clear, so I asked what was happening & that I didn't understand. But you all said nobody was talking at the time, so what was I hearing? And then every once in awhile, things were crystal clear.

While I appreciate that the technology is available when we need it, I don't think it's something I'll do again unless it's really necessary. Thank goodness Beth is going to set up our group website/chat room thingy. In the meantime, we've always got personal email.

Anyway, I've started working on my proposed outline, but it's taking some time. I'm trying to include some actual examples under the chapter headings to give you all a better idea of what I'm talking about, but collecting them is taking some time. It's in the works though.

Cees

From: Barbara McD <bamny (AT) yahoo (DOT) com>Subject: PF book questionnaireTo: mbmurtha (AT) yahoo (DOT) com, breathe-support@ yahoogroups. com, "Jack Marshall" <mrshlljck (AT) yahoo (DOT) com>, "cees" <ceesnews (AT) yahoo (DOT) com>Date: Friday, November 20, 2009, 9:16 AM

Dear Beth, Leanne, Jack and Cees:

I am attaching the proposed questionnaire. Please feel free to email me with any suggested changes or additions.

B

Barbara McD

PF--Sept 08; Sjogren's--Apr 09; Reynaud's--seems like forever

Beautiful Western NC

Attitude is everything.

[Guest guest]

My Windows won't open the attachment. Tells me it's "questionable".

What are you sending Cees? lol.

MamaSher; 71, IPF 3-2006, OR.Don't fret about tomorrow, God is already there!

PF book questionnaireTo: mbmurtha (AT) yahoo (DOT) com, breathe-support , "Jack Marshall" <mrshlljck (AT) yahoo (DOT) com>, "cees" <ceesnews (AT) yahoo (DOT) com>Date: Friday, November 20, 2009, 9:16 AM

Dear Beth, Leanne, Jack and Cees:

I am attaching the proposed questionnaire. Please feel free to email me with any suggested changes or additions.

B

Barbara McD

PF--Sept 08; Sjogren's--Apr 09; Reynaud's--seems like forever

Beautiful Western NC

Attitude is everything.