I regularly log onto the forum, i used to find invaluable information and it was a place where you could log on and not feel alone. I know it's a busy time of year, but I am surprised that every day there is a list of new members and there are currently 6551 users, yet the forum is barely used. PUK is the first port of call for anyone dx in the UK, surely we can make it a bit more inviting?
just testing here 'cos everything I've tried to post over Xmas has turned into a blank post and then disappeared - I've also been getting thrown out of the website to a page that says something about updating. No idea what I'm doing wrong. If this actually gets through, I'm only writing it because the 'Christmas Spirit' is making me feel braver than usual, and I'm still writing it with slight trepidation, but I really am only talking from a personal viewpoint. I have found some really useful information and received some great advice via the forum but occasionally replies are pretty sharp ( I'm fairly sure I've been yawned at as a response to one post and a couple of replies to other people have made me glad they weren't directed my way). I put my hands up to being totally over-sensitive (and neurotic and .... ) so it s probably just me, but I do worry about sounding stupid, getting negative responses and upsetting people and this does limit my involvement. just a thought. K
Hi Jackson, I know exactly what you mean....you said what I wanted to say. We have all joined this organisation presumably because we have a link with Parkinsons.
i too have found the site difficult at times to navigate and have lost messages. I don't think you are over sensitive at all, it's not just you.
This forum could be so much more for all of us. I know you can't expect 6551 people to be online, but there must be a reason that there is never more than 2 or 3 most of the time.
There’s quite a lot of ‘policing’ that goes on here as it seems to be presumed that every forum member will read every message at face value.
The result? The sensitive souls with possibly the most to contribute will refrain from posting for fear of being humiliated.
This forum is different from most I've joined in that a lot of the members are here through initial desperation to find out answers to how to manage life with PD. The one thing that unites us also divides us as the stage our PD is at and it's treatment varies so much.
Forums are like any open group meeting with one exception, everyone can be heard and responded to. This can be intimidating if you're not used to being heard, especially if different opinions come your way for the first time.
Then there's the regular posters who always have something to say (mirror please). It's taken my PD to progress to find this forum as a valuable resource for expression and sharing experience of living with PD from 44 to 53.
I've got much more to say, but I'll hold on for others to voice their views after one final navigation suggestion for ease of use. Please can the following menu bar appear on every forum page;
View forum / Active topics(active tab) / Most liked / Unanswered topics / New and updated topics
Since the inception of this 'new' forum, much delayed and much anticipated, further delayed etc. I post very little.
I find that it is not user friendly, even being pretty au fait with using a computer myself; it does not have the features that are available on other forums, hence I do not know if you have been a member for some time or not by clicking on your user name, so don't know if you knew the previous forum format.
My OH, a PWP, could not contemplate using using this forum with all the clicks necessary to get to the main forum. It's, IMO, a travesty of the money spent on it when, off the shelf, FREE forum setups have more features and a user friendly format. I do know what I am taking about as I use such a forum on a daily basis. Heavens knows how much PUK spent on this sad excuse of a forum.
So, Ali, the first thing that needs to be implemented is making it easier to access and user friendly; there are still thinigs that were promised for this new forum that have never materialised but were requested by members, Maybe then it would be more 'inviting'.
Lily, I don't understand what you mean. The only 'policing' that I see is an all too often presence by Admin.who feel the need to post on a frequent basis. Fine if it's to do with a query and to direct a member to where they can find help, but NOT to join in on any thread, unless that thread, or a post on it, contravenes the T's & C's.
There, enough said, I shall probably get my knuckles rapped again in another e mail from Admin.if I say any more.
My last post a few minutes ago was timed out for editing when I wanted to correct a few typos as I type at speed. God help a PWP trying to edit a post with such a short time constraint!!!
Hope you all had a good Christmas and wishing you a very Happy New Year.
I hope the moderators are listening. Puk has an active audience members are paying to be part of this community, a national organisation, we are all suffering in some way from parkinsons, I think we deserve better. These are my views and opinions.
This is the first time I've joined any sort of Forum and your right Kendo, at the time, I was desperate for some backup because I'd just been informed that the only help I could get from the doctors was to undergo DBS.
As things turned out, I saw the professor that I am under, and he catagorically confirmed that I was nowhere ready to need DBS and would not recommend me but I was left for 2 months to worry about it.
Since then I have found all the people in the Forum to be helpful and supportive and it really doesn't bother me for PUK Admin to be involved.
Wishing everyone a happy and peaceful New Year.
With best wishes
Hi casie, I'm delighted you have found the forum so supportive, that's exactly how it should be. It's very sad that the support you received Is not for all to see, I'm sure many could benefit, I tried to view and got access denied.
i am a relative newbie.
And I suppose i've done all things all newbies do, it is true too say in any form of life people click and people dont, and some form their own circle of life. some will only respond to what interests them within the thread or a member within a thread, i use fishing forums they are much the same as here, there are busy times and quiet times just as here with all of them some have 30 thousand members, people come and people go, they prob have more moderation than here and there is more spam.
that's my worthless tuppence
Hi sea angler, I understand where you are coming from, but to compare a forum where people come to filled with fear of the initial diagnosis to a fishing forum ?? I think it's time we all tried to help one another...this isn't a sport...is it??
it was a example.. and you interpreted as people do on Any forum in different ways too what it was trying too convey. Also here's my intereptation.. are you trying to say i havent 'helped people'??, there it's easy isnt it!!,
You have asked for a opinion, i gave one, you didn't ask for opinions from specific People that give you the opinion that agree's with you only??.
by the way fishing is not a 'sport' it is a pastime or passion, is your comment just too make 'sport' out of me for your agenda..
that's exactly how it read's.
oh what a bad man he is.
Could the admin delete my account thanks as their doesnt seem too be that option , i wont be reading or useing this page in the future. Thanks!!.
I started this thread simply because, in my view, people aren't using the forum to its full potential. That was my opinion. There were 6551 users and only 3/4 users online. It has been indicated that some feel intimidated.
Of course everyone's opinion matters, and believe me, it's rare that many agree with my point of view.
I can't quite comprehend why you have become so upset and wish to delete you're account, it's not really helping the forum to move forward.
if I have upset you or anyone else, I apologise.
I tried to give my point of view.
Sea angler, I never doubted youre sincerity or you're intent to help.
I apologise if my opinions were misinterpreted or misplaced.
Kendu, I'm not too familiar with forums either, and was dx in 2011. I am also frightened of what my future holds, this is all reasonably new to me. This is why I feel we should be supporting one an other.
I too think a bit of banter is healthy.....it's life!
I was speaking for all of us. We deserve better.
Hi Ali p
I don't understand what you mean by "It is very sad that the support you received is not for all to see" and "I tried to view and got access denied". What did you view that gave you this answer?
I was talking about the support I received when I phoned the PUK helpline. The Admin Team were really great in answering my questions about how to use some of the softwear and when I didn't understand what they were saying they didn't stop until I got it.
I've also received great support from several of the Forum members when I wasn't feeling my best and I hope I've said something helpful when others are having a difficult time.
I try never to post anything that would upset someone so I hope you are not upset with me.
With best wishes