An appeal


#1
Over the past year or so that I have been a member of this forum, I have gained so much both PD & otherwise. I am so very sad that it would seem people no longer find it a useful, safe, thought provoking & entertaining place to visit. Over the year I have seen more people leave than arrive. Perhaps that is the way of forums? I do not know, I don't have the experience. But I would be delighted to welcome any and all unseen guests, both past acquaintaces & new ones. No pressure, no pleading, just an invitation

#2
hi annebernadette,

I had 2 posts removed over the weekend including one to Ray asking him not to leave the forum. I do not believe either of my posts broke any of the forum's T&C's. Also i was not given any explanation from the moderator as to why they were removed! I even sent emails requesting i be given a reason, but they were just ignored !!!!

As you know it takes a lot of effort to type messages and send emails when you have PD, just for them to be removed or ignored without any explanation. Clearly the moderators don't understand this or maybe they don't care? Maybe if PUK actually employed people who had PD within the Charity, then they might understand the impact there actions can have on pwp......

#3
Hi Annebernadette
As you know I only joined this forum last week but was aware of it for a while before hand. I have found all of the advice and discussion interesting and helpful. To be honest the best thing is knowing that there are other people out there like o/h and I who are dealing with similar issues. PD can be very isolating - you don't like to burden friends and family with your feelings all the time!
So thank you for being so welcoming and to all those who have offered advice on so many issues.
x

#4
Thank you for your reply blue eyes. I think I can understand the reluctaance of members to continue to post. It seems to me that there was a cut off point for the thread in Q & all posts from that point were deleted, irrespective of content. As you point out, it would be a courtesy to be informed of who by, & why that decision was made

#5
well shiver me timbers newbie! There I am tap-tapping away at about 1 word a minuute & you sneak in a post! I do so agree, friends & family don't want to focus on our PDism. But it is a great comfort to know that PwP & their carers are are not some kind of alien life form. And for that I thank all members of this forum

#6
Hi Annebernadette, and especially 'hello again' to Blue eyes47,

I have regularly read the comments posted in this forum but, unless I know I can help, I don't reply. The reason is I can do without all the frustration I feel when trying to log in. Over the last year I have had to change passwords at least 3 times as they weren't recognised. This entailed waiting for email with a jumble of letters to respond to, and then re-typing and noting new password.

As Blue-eyes47 said - it takes an awful lot of energy just to type a couple of sentences, without having the added hassel of having to start afresh. Having said that, now that I have been 'recognised' once again, I look forward to adding a few experiences where appropriate. Mary

#7
You have all voiced exactly the way I feel about the forum. I have only been posting here for a little while but I have met people who know what I am feeling, given comfort and advice that has helped both me and my o/h. Please can we keep it going.