Forgive me, but I need to post this.

I'm wondering why, when legitimate pacemaker/ ICD questions are asked, hardly any replies are made; but when someone posts a sob story, everyone rallies around that, and replies pour in?
Wasn't this site created to help inform and support pacemaker and ICD recipients? The key word here being RECIPIENTS.
Often times, one person gets all the support, at the expense of informative replies to all other legitimate members with important questions.
The comments ratio on several posts proves my point.
That's all I wanted to say.
Please don't send hate mail, this is just my personal opinion and observation.
Have a fantastic day.
~ Dominique ~


8 Comments

Replies

by SMITTY - 2007-05-02 03:05:27

Well-said Blake,

Now if I may add a comment to what you said, I reply to questions for several reasons:

Sometimes, the question is about something I think I have experienced.
Sometimes, I look and think I don't know the answer, but that looks interesting and I go looking for an answer.
Sometimes, I think that is an easy one to answer and I give it a try.
Sometimes, I may find the question interesting and even if I think I maybe could contribute something useful it happens to be a day I simply do not feel Iike writing.
Sometimes, I think the question is comical and I happen to be in a mood to want to join in the fun.
Sometimes, I think the subject is so far over my head that I better leave that one alone.
Sometimes, I see the answers(s) given cover the subject so well that I can't add anything useful.
Sometimes, I feel that I have been such a prolific replier for several days that I'm embarrassed to make a reply unless I think the question is urgent to the person.

My guess is that many others are like me. There is no single reason that causes me to make a reply, it just happens and I always hope someone benefits from what I have said.

One other thing, I have noticed a trend, I THINK. When no replies have been given on a question for one or two days and someone replies, that sort of starts the ball rolling.

I know I reply more than most of the members. I don't do this because I think I am smarter than the others, but I'm selfish and I do it because it gives me something to do. I have been limited in what physical activities I could undertake for several months. Computers have always fascinated the heck out of me, even the word processor part, and you people see the results of that childish fascination.

Smitty

Wrong info

by Suze - 2007-05-02 04:05:16

I'm fairly new to this site and in the begining felt more than a little intimidated by two different things.

First, the other members seemed to be comfortable with each other and I felt like an outsider. But I figured only time would help my feelings about that. So I jumped right in and started posting and replying. I don't feel as intimidated anymore.

Second, I could see that a couple members really knew the technical and medical stuff very well. So I usually waited for them to reply to the specific technical things... I was afraid (as Blake wrote) to give any incorrect information. Therefore I didn't comment at all to that topic.

However, I think I could at least acknowledge sometimes the concerns posters have even if I don't have any answers or experience in that topic. I've been on other message board and had my questions ignored. It's not a good feeling... Am I getting my thoughts across?

Anyway...I wish everyone a great day.
Suze

well said Smitty and Blake!

by bambi - 2007-05-02 04:05:24

After reading Dominique's post, I was relieved that someone else felt this way! I'm a new member, and haven't had a lot of feedback to my questions. As a matter of fact, this seemed to be a forum for just a few members writing back and forth to each other. However, reading Blake and Smitty's replies gave me some new ideas as to why there is sometimes no response. I have found this site to be informative and appreciate the responses from those who did reply to my queries. As to me replying to others, unless I have good, informative answers, I feel I have no business replying. I'm a little intimidated by some of the other's knowledge. Maybe some of us are just looking for encouragement from each other's experiences. We all need feedback from each other and support! I feel a renewed sense of purpose to be better " pacer friend" to all members of this club. Thank you Blake for tossing us all a "challenge"!
Bambi

postings

by CathrynB - 2007-05-02 04:05:41

Ditto, ditto, ditto Blake, Smitty and Bambi! And Smitty, if you ever quit posting responses, I'm going to hire a private investigator and come to Texas to find you. Maybe that's what we should do re Lenora? Take care all, Cathryn

Hang in there

by Peter.Nash - 2007-05-02 05:05:53

Hi all,
I have noticed since Blake revamped the site,,, and it is a superb job may I add. although there were a few teathing prolems early on... but it has been a bit slow....by that I mean not so many people on line but this last week or two it seems to be rapidly improving as more and more members get there heads round the changes and problems..... We have to bear in mind that not everyone is up to speed on computing ect,

Also I think some rsponses depend on how the question is put ie. a matter of fact... where as a so called "sob story" generally comes from the heart and is responded to as such... and there is one thing these members have is big hearts...I have had an ICD for 4 years now and apart from it saving my life a few times I really know nothing about them...So I my self wouldn't answer anything technical about them.... posting and commenting is the way to go good luck to everyone..... Peter

Why so bitter?

by bowlrbob - 2007-05-02 07:05:49

Did we miss one of your questions. If so i know we are all sorry. But not one of us knows everything about Icd's and pacemakers. I have answered many questions if I think what I have experienced might help. Many times however posts or questions don't relate to me or what I have gone through. I can't comment for instance on Icd's because i don't have one or know anyone who does. Give me a question on VasoVagal Syncope though and I will jump right in. I know from experience what might work or at least help. Methods worth exploring. Also I don't always get online every day so I miss some questions. So if you have other questions that have not been answered don't give up or criticize just ask it again. someone will eventually respond. The right person just has to read it. This is a great site for both answers and support. give us all a chance and we will come through I promise. Bowlrbob

Thanks for the feedback

by admin - 2007-05-02 12:05:57

Dominique,

The club's purpose is to help cardiac pacemaker and defibrillator recipients meet, share information and support each other. It is true that some messages get more replies than other. I think it's because some topics are of more interest than others and that members have an easier time to comment on certain topics.

As a vetran receipient, I try to reply to specific information requests if I have knowledge on the topic. If I do not have knowledge, I tend to say nothing as I do not want to provide incorrect advise. Other members may be doing the same.

The spirit of the club is active caring members who share information and their experiences. I challenge everyone (including myself) to get more involved!

Blake

ditto ditto ditto

by queen_beez - 2007-05-04 03:05:44

I just read all the responses and before I did I was ready with a long explanation of my concern for everyone getting answers to their questions. But the answers you all gave were right on. We don't have all the "answers" we are a support group and we can always support if we can't or don't know the correct info to ginve. As human being and also with the extra bonus of empathy on this site we can easily respond to the "sob stories" but not always to the ones that need experience and actual knowledge. I agree with bob, I am not on all the time but if I read a post I will answer it if i have any experience or knowledge to share. But if I am not on for a day or 2 then I may not see the question . Re-posting is the best way because someone with the correct knowledge, or the ones on here that see the question and notice no one is responding, will look up the question and do reasearch then try to help that way. I have witnessed that many times. So hang in there help is on the way ,it just sometimes" takes the train not the plane to get there". LOL.
Truly, your "strange" friend,
Susan

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I am 100% pacemaker dependant and have been all my life. I try not to think about how a little metal box keeps me alive - it would drive me crazy. So I lead a very active life.