Enough is enough!


Its been a while since i last wrote and I have thought and fought long and hard about this decision but after reading some of the other issues today, that other members are STILL having problems, months after it was first reported about losing posts, AND STILL NOTHING HAS BEEN DONE TO RECTIFY THE PROBLEMS !

i Come here to read advice, give advice, support and be supported and latterly I'm getting very stressed trying to do these simple tasks. I am not alone, there are clearly other members getting equally frustrated and stressed whilst trying to post, and yet here is the once place that all fellow sufferers should be free of stress and concern when visiting to read or to post  anywhere ON these forums..

It would be  true to say that the lack of support from ADMINISTRATION resolving the problems is now causing my health to worsen to the point where for my healths sake i must request that my account  be deleted ASAP. and i vow never to take an active part again.

That the many well intentioned members  of this forum have had to endure these problems for so long is quite frankly utterly disgraceful and in my opinion PUK have a lot to answer to. Sadly i forsee that the same problems regarding loss of posts will be unresolved in 6 months time, such is the confidence that i have in PUK. !!

i HOPE I AM PROVED WRONG BUT SOMEHOW.....................I dont think so.


Have a good Day folks .




Re Losing posts

I noticed that if I hit the post button twice ( easily done with PD) I ended up on a different web page and lost the post.

What seems to happen is first click starts the process of posting and a grey box appears.

Because the mouse cursor is no longer over the post button a second click will activate any link such as facebook or twitter thus transferring the web page and losing the post.

I dont know if this can be fixed but at least we are aware.



I am very disappointed to read of your intent to leave the site.

You have been a voice of reason on this forum and your contributions are valuable to all of us.

I hope you will change your mind.

I recently attended the inaugural google hangout which I think has real potential as both a social area and a means to communicate advice and experiences with other pwp.

Before you go, why not try the next one, it would be good to speak with you and hear your views.

I find that talking face to face (video being the next best thing) brings a degree of humanity to any situation.

It was good to see Elegant Fowl and Fedex on screen.  

Personally I felt that communicating in this way connected us as pwp and for me I felt that whatever our differences may be through the written word ultimately it didnt matter.

Here were two others who knew what I was experiencing as a pwp and that made up for all the shortfalls of any forum.


Leyther,  Thank you for you comments but my mind is made up.

Each time  i visit i see someone else is having problems with losing posts and find the response from admin over many many months wholly inadequate in resolving the issue which IMHO is software  related and NOT the fault of the member who is posting. This alone angers me and frustrates me, but then add in the fact that admin have stated there will never be the option of a members chatroom, and one might be able to understand why i feel all members are getting a rough deal in that the forum is not user friendly and for people in our condition it damn well should be !

I take your point and agree re the video link up but feel that for me things have gone on for so long that i now lack the confidence and hope that PUK will actually resolve the issues, including upgrading the forum to one that offers options and stablity and a pleasure to visit.

Specificaly regarding the chat room , had it been an option last year  when i was so low and depressed that i made a serious attempt on my life then maybe ...just maybe ....i might not have gone over the edge had i had someone i knew i could chat to who was online at the time. Clearly i'm still here by the grace of god and will be forever thank full, but i would hate to think there was someone else in a similiar situation who succeded only because there was no way other than via pm that they could chat to  within the forum.

But the final straw was when i discovered that an outside company is paid to come here and moderate these forums outside of normal office working hours, that fact alone is i feel is scandalous.

So life goes on but for me no longer here , i wish you and EF, and Fed the very best of luck with your video link project and genuinely hope you all can succed where i have failed.



There seems to be no option for me to delete my account, I kindly request that admin fullfill my wishes as soon as possible.


Thank you


Hi Kyloe

Thanks for your message. I'm really sorry to hear that you made an attempt on your life last year.  I am struck by the fact tha tyou feel strongly unable to take advantage of other chat facilities available.

I'm also quite surprised at your response to quite a normal practice - having moderators throughout the evening on online forums (especially those with people who may be vulnerable). This is something we would not be able to do with current staff (me and Alethea at present). 

As for the problems with disappearing posts, as we have discussed in a number of places on the forum including here and here, we will continue to work with the community to try to resolve these problems. 

Though it is sad to see you do, we will comply with your wishes. After this email, your account will be closed. Your previous posts will remain but you will no longer be able to post on the forum.

Of course, if you change your mind at any time, you will be welcomed back. Just write to us at [email protected]

Take care,




           My Friend, I speak for all when I say you will be missed, I fully understand the cause of  your dissapointment, I myself have  had frustrating problems recently, including vanishing posts, I have had help of  course Althea and Ezinda, helping me back on track, but did think of BOOKFACE as a alternative, then I thought of all my friends here and ultimately I probably post more  for them than  myself, also I have been battered to the point of giving up by  Dyskie , 24/8, well iit felt like 8, lasting 3weeks, then all three pcs broke leaving me PCLESS, not good eh, so remember, you an always return if you  wish.

                    GOOD LUCK                                                FED


It is a sad day when the technology for giving and receiving help drives you away.  PWPs will inevitably often  hit the wrong key, or part of the screen that triggers the posting being typed to be put on hold and often lost for good.  There must be an auto save mod for this forum that could kick in and allow us to retrieve text.



I have been trying to search for information to help me over the bank holiday putting in a key term and pressing search . All I get is no results for this search please try again . . . .  It happens with every term I put in . I can't search for anything . Has anyone else got this problem ? 



            Hello , I gained access to our forum through bookcase,,?? nope,bookface,???,now then  little friend (my laptop),you dont want to upset old  FED at this hour do you,,,FACEBOOK!!,   thank you, access was virtually instant,and there does not seem to be the frustrating problems  with the mouse back tracking all the time,or disappearing  altogether, so Kyloe this could  a waybe  spAWOLoke too soon,the mouse went i AM leaving tthe mitakes for all to see, but at least it seems to allow rapid access allowing a much quicker route to mistake making.



Hi Maddison,

Can you tell me what search term you were using? It would help if you could send it exactly as you wrote it. 

Also, where did you click through to get to search? Was it the search box at the top of the page next to the helpline number?

I'll see if I can recreate the problem you had and maybe make a helpful suggestion. 

I'll wait to hear back from you



I long ago gave up on the search box!

This morning I typed "Sinemet side effects" and later "rytary" into the box at the top of the page, pressed the magnifying box and bingo! " no results for this search"!

This website is so poor compared to everything else I use.




Hi Ezinda I was using the search box next to the helpline number at the top of the page . I have used it several times and haven't had a problem before . I wanted to look up pwp experience of ropinerole so just  in ropinerole then tried requip . In the end I was trying numerous things but nothing worked . Thankyou


Hi Maddison

Thanks for writing me back. When I checked with the website team this morning, I learned that others had been having problems as well. Looks like there was an issue while they were carrying out weekly maintenance. 

All should be okay now. Will you try again and let me know if you have any other problems?

I hope that helps,



No problem now Ezinda thanks . 


I used to be able to  access the forum via,'My Favourites'. This is no longer the case. I now have to  manually put in P .org.uk into the search engine and then do numerous clicks to get me here. Why???


Hi benji

This sounds like it might be to do with your browser, not the forum itself. Depending on the browser, you should be able to navigate to parkinsons.org.uk/forum and then click on 'bookmarks' or 'favourites', or there might be a little star in your browser window that you can click. This will save the page you're on as a favourite. 

If you tell me what browser you're using, I might be able to give more detailed help.