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  • 3 weeks later...
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>

> On Facebook you can search my email address *(*icribb@gmail) the same email

> at is attached to all my posts to the support group. Sandi has used a

> different email address for facebook so try searching by her name (Sandi

> Pearlman). It gives two options, one only has three friends and no profile

> picture, the one with lots of friends (nearly 200) is her! Or if you are my

> friend you can find her in my friendship list (they are alphabitical by last

> name). or search (leigh@...) and you will find her.

=====================

Ian,

You might keep in mind that not everyone wants all their info plastered about

the internet!! I am on facebook (silly me! I didn't realize the PSC Group

there was for the 20-30 group and here I am at 50) but under a different name.

I like to know just exactly where my info is going and maintain at least a

modicum of control over it.

For example, I would definitely not join your friend list for the sole reason

that you make it clear to the 1,000+ people who see THIS group, exactly how to

access your friend list on Facebook. I'm not trying to hide anything, I'm just

a bit leery of who sees what about me! Call it fuddy-dud caution, if you like!

On Facebook I have put a few PSC folks on my friend list, but it's not my

primary focus on that group and sometimes the medical issues are nice to ignore

for awhile! I tend to use FaceBook for renewing contact with old friends whom

I've not seen for 20 or 30 or even 40 years.

Just my two cents.

Regards,

Carolyn B. in SC

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>

> On Facebook you can search my email address *(*icribb@gmail) the same email

> at is attached to all my posts to the support group. Sandi has used a

> different email address for facebook so try searching by her name (Sandi

> Pearlman). It gives two options, one only has three friends and no profile

> picture, the one with lots of friends (nearly 200) is her! Or if you are my

> friend you can find her in my friendship list (they are alphabitical by last

> name). or search (leigh@...) and you will find her.

=====================

Ian,

You might keep in mind that not everyone wants all their info plastered about

the internet!! I am on facebook (silly me! I didn't realize the PSC Group

there was for the 20-30 group and here I am at 50) but under a different name.

I like to know just exactly where my info is going and maintain at least a

modicum of control over it.

For example, I would definitely not join your friend list for the sole reason

that you make it clear to the 1,000+ people who see THIS group, exactly how to

access your friend list on Facebook. I'm not trying to hide anything, I'm just

a bit leery of who sees what about me! Call it fuddy-dud caution, if you like!

On Facebook I have put a few PSC folks on my friend list, but it's not my

primary focus on that group and sometimes the medical issues are nice to ignore

for awhile! I tend to use FaceBook for renewing contact with old friends whom

I've not seen for 20 or 30 or even 40 years.

Just my two cents.

Regards,

Carolyn B. in SC

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Carolyn -

At least you know how to Facebook - that is way beyond my "fuddy-dud" capacity - which can barely text message!

Joanne H

(, Ca)

Ian, ... I am on facebook (silly me! I didn't realize the PSC Group there was for the 20-30 group and here I am at 50) but under a different name. .. I tend to use FaceBook for renewing contact with old friends whom I've not seen for 20 or 30 or even 40 years.Regards,Carolyn B. in SC

..

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Carolyn,

 

I don't plaster the information all over the internet. When I talk with any body else on Facebook I don't mention PSC except in private messages (messages that can only be seen by the two of us).  I share more openly within the support group because this is a private group. I have been greatly enriched by getting to know members better through FB and I want others to be enriched too. Being in my friendship list does not mean that you have PSC about half my friends do not (from my church, I know from work, or family). A caution for any body  who does want to join facebook, depending on your settings, anything you post can be seen by your friends and their friends. Like if Carolyn posted a picture and one of our mutual friends commented on it, I would then be able to access that picture and browse though the entire album.

 

Ian

>

> On Facebook you can search my email address *(*icribb@gmail) the same email> at is attached to all my posts to the support group. Sandi has used a> different email address for facebook so try searching by her name (Sandi

> Pearlman). It gives two options, one only has three friends and no profile> picture, the one with lots of friends (nearly 200) is her! Or if you are my> friend you can find her in my friendship list (they are alphabitical by last

> name). or search (leigh@...) and you will find her.=====================Ian,You might keep in mind that not everyone wants all their info plastered about the internet!! I am on facebook (silly me! I didn't realize the PSC Group there was for the 20-30 group and here I am at 50) but under a different name. I like to know just exactly where my info is going and maintain at least a modicum of control over it.

For example, I would definitely not join your friend list for the sole reason that you make it clear to the 1,000+ people who see THIS group, exactly how to access your friend list on Facebook. I'm not trying to hide anything, I'm just a bit leery of who sees what about me! Call it fuddy-dud caution, if you like!

On Facebook I have put a few PSC folks on my friend list, but it's not my primary focus on that group and sometimes the medical issues are nice to ignore for awhile! I tend to use FaceBook for renewing contact with old friends whom I've not seen for 20 or 30 or even 40 years.

Just my two cents.Regards,Carolyn B. in SC

-- Ian Cribb  P.Eng.cell:  (6...Enefen - Reviewer/Designerwww.enefen.com

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