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Support for dealing with incontinence
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PostPosted: Sun Jul 13, 2014 2:01 am 
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Joined: Sat Jul 12, 2014 3:01 pm
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Location: NOLA - The Big Easy :)
About 5 minutes ago, I was scrolling through my Facebook feed and saw a posting in a neuropathy support group that I've joined. Well, as you can tell by the title, it gave me the idea of maybe making an incontinence Facebook page. I know most people actively check Facebook than forums, so what about it?


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PostPosted: Sun Jul 13, 2014 6:17 am 
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I don'r even had a facebook account. I quite like forums like this rather than Facebook - a company that is about to sell all the data it has about its members to outseide companies for advertisig purposes. Better to stick with the traditional fourm.


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PostPosted: Sun Jul 13, 2014 8:54 am 
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Location: North Carolina - Raleigh area
Personally, I would be very concerned about the privacy issues inherent on Facebook and definitely would not participate there. It is important to me that I can speak very freely in this group about extremely personal issues that I would be humiliated to have accidentally exposed as notifications, etc. to other friends or business associates on Facebook.

I have coped with my fecal incontinence and 24/7 wearing of diapers sufficiently well that none of my friends and associates have any clue. Bowel incontinence and diapers are not something that I wish to risk disclosing. I have accepted living with my condition, but other people have many misperceptions and often not only are not so accepting, but can even be cruel. As a result, I am still "in the closet" on this subject.

I would suggest that many medical conditions such as neuropathy are not so personally embarrassing as incontinence.

--John


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PostPosted: Sun Jul 13, 2014 11:15 am 
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Facebook has private groups where your participation is secret only to the members. I can understand the concern though.


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PostPosted: Sun Jul 13, 2014 12:14 pm 
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Alainaluvsu wrote:
Facebook has private groups where your participation is secret only to the members. I can understand the concern though.


not that private though - to Facebook.


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PostPosted: Sun Jul 13, 2014 1:50 pm 
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I don't trust facebook neither, I like keeping my condition away from facebook.
Only my wife and doc. know about my health problems, and I like to keep it that way.
I do know, you can create closed groups, but still - what if a closed group suddenly became open?
Then everybody I know, and are connected to on facebook, would know instantly........


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PostPosted: Sun Jul 13, 2014 5:32 pm 
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Location: "Wet Coast" B.C., Canada
I'm with you there NotTheAverageMan, not something I would post on FB in any way, shape or form... I have hidden it from most everyone, it does not need to go online besides here where if it got out, I would have to deal with the guaranteed questions from some around me. They don't know now, therefore, they never needed to know to begin with, none of their concern! This Forum is just perfect, and have made some good friends on here too, that always helps, as I know they understand what it's like to have to deal with this sort of issue! Puffy

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Puffy
BC, Canada
Fighting the "Bladder Battle" since 1995


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PostPosted: Sun Jul 13, 2014 6:35 pm 
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Now, as much as I agree that it would be terrible to use for the members to post in, I do think that having a simple Facebook page for the main site, with the Primer and all, would be a nice idea.

One that is separate from the community, though.

Just a basic page with the Primer and rest of the front page info.
Not even a link to the main site or forum here.
Just the basics about incontinence, and some ways to deal with it.

Without the links, there would be very few people who would even know it is related to this site.

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Hello, my name is Scott, and physically, I am 40 years old. However, thanks to abuse, and being special needs, mentally and emotionally, I am equal to about 6-10 years old.


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PostPosted: Sun Jul 13, 2014 8:16 pm 
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That I could see Mike902 , would be completely up to Schoppy if he wanted to make one there. Seeing that everyone is on FB now-a-days, could be useful. I am sure if they are looking online for stuff, they would find info thru a good search engine, Puffy

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Puffy
BC, Canada
Fighting the "Bladder Battle" since 1995


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PostPosted: Mon Jul 14, 2014 5:07 am 
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Location: North Carolina - Raleigh area
Mike902 has a good idea.

A controlled page on Facebook could safely inform others about the ISC and include the Primer. That would be helpful to others who are incontinent and have not found this group. Making the Primer more readily available to others outside our group would be a great service.

The important thing for privacy would be that our discussion forums not be copied to Facebook and not even an image of the home page where our names appear.

Just my thoughts.

--John


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