What do you think?

i would suggest you start by using the social club in some way.it is by far the most popular site.
i think there should be totally separate sites for pwp and carers.
carers are mostly looking after people with advanced pd which can be upsetting for pwp. their points of view and interests are generally quite different.e
Picking up on turnips post, I, as a carer, can understand how uncomfortable it may be for those of you with pd (I still don't know what pwp stands for) to listen to the bleatings of us carers who are invariably looking after a person in the advanced stages of pd. However, that is life, and the forum allows us to sound off and seek reassurance from others that we are not alone (much as for the sufferers) If the content is upsetting, or more pertantly, is potentially upsetting I suggest that you do not visit that page.
My own view, as a person married to someone with Parkinson's, is that it would be a mistake to have a seperate section for carers.Each needs to know how the other half feels, even if one does not like reading some of the posts.
Hi Icarus + English Country Dancer.

I agree.....I don't see much point in separating the views of PWPs and carers. As a PWP myself, I find it interesting to read about how it is for carers.

I know that generally the issues which carers need to deal with are completely different from my own, but so are some of the issues which other PWPs are facing. We are all different people at different stages of PD, taking different combinations of meds and experiencing different symptoms, but whatever the issue that we need help with, there is invariably someone else "out there" who has some experience of the same thing, which is why this forum is so helpful.

I think that segregating PWPs and carers would just create a "them and us" situation, which would not be helpful to anyone.

Kathy

P.S. Icarus - "PWP" stands for "Person With Parkinson's"!
1 Like
Thanks for that Cathy C. I suppose that if I had extended my tired and often befuddled brain I could have worked it out!:flushed:
I said that it was a tired and befuddled brain. Sorry [u]K[/u]athy C.
Whilst on the subject of "what do you think" I think for boneheads like myself a provision to edit a post [u]after[/u] it has been sent could save blushes.
Yes,You can do that on Neurotalk.Very useful for people like me who will dash a post off without wearing their glasses or reading through before they post.Bad habit.
When Bill was diagnosed 13yrs ago, the PD nurse told us that we would both suffer from PD. At the time I thought "she's lost it".
I now know she was right. If you and your Partner/carer are in this for the long haul your lives are changed, both of you, not just the one who has the diagnoses.
I fully understand how devastating it must be to have PD but the same applies to the wife/husband/partner/parent/child /carer. Unless of course your prepared to walk away.Some do I know,most don't.
I find it helpful to know how everyone is managing. Ask for and maybe give advice.Read the jokes out to Bill, feel as if we are a part of a group.
I can't see that splitting the forum into two groups would help.
annesel
What did "Aesop" say; " "United We Stand, Divided We Fall"

It would be a sorry day when the forum got split up.In my opinion it would be like having a winners and a losers team.

No , what makes this forum so good is that we can all draw on each other.
Our opinions , ideas, up and downs and most of all the small personal achievements that happen to us, help be it carers or an individual with PD.

I personally have no carer but have gained help and knowledge from them on the forum and also help and knowledge from others in a similar position as mine. Let's stay united.
ncn.
Well said ncn.
annesel
:angry: lets have a propper chat room were you can chat with some one when you want to not wait till next time there on
ian c , not trying to be sarcastic ,
:flushed: but if they are not on, how could you chat
with them? :grin:
Perhaps you mean you could chat with other members.
ncn.
I must say i agree with ian a chat room would be good as you can have a chat and get a response straight, just a thought.
margo
meant to say straight away :flushed:
Im new to the forum, I find it hard to meet and greet, I thought I put my name in but I cannot find myself on the meet and greet page. Has anyone seen me
debbie sturgis
Hi Debbie.

Yes, I've seen you! On the "Meet And Greet" topic, under the thread titled "I'm New To The Site"

Welcome to the forum. I'm sure that when you get used to it, you will find it very helpful and informative. Just try clicking around the forum when you have a few minutes to spare and you will soon get used to the way it works.

I am 47 and was diagnosed 3 and a half years ago. I am on a variety of medication, am still working, and I pretty much just get on with things. I am a single parent (my son is nearly 15) so "getting on with things" kind of goes with the territory!

You say that you have an unusual strain of PD, that the doctors don't know of?? I'm not sure what you mean by that....what exactly were you told when you were diagnosed? Most PD is "idiopathic" (of no known cause) and everyone's symptoms, drug regime, response to medication, side effects, interaction of different drugs with each other, progression of the condition etc, is different. You probably also find that your symptoms very a lot from day to day. Mine certainly do! So finding the right medication combination is very much a case of trial and error, for all of us.

It sounds as though your neurologist hasn't explained things very well. Some doctors are like that....they just "blind you with science" and leave you feeling confused and reluctant to ask questions. Do you have access to a PD nurse? They are usually very good....they work with the neurologists and can liaise with them, but they are more approachable and friendly, and will explain things to you better than neurologists do. If you are not sure whether there is a PD nurse in your area, try ringing the PD Society helpline: 0808 800 0303 and they will point you in the right direction!

Hope this helps.

Take care.

Kathy :smile:
Thank you for all the responses and the discussion on the ‘What do you think?’ thread. What seems clear is that having the forum remain whole as currently is a priority for many.

What also seems clear is that there is still some confusion about when or why we remove posts and what can be expected from the moderator.

A good response to this might be working together to draft a set of user guidelines for the forum together.

You may already be aware of the Forum terms and conditions which you agreed to when you registered for the forum. However, these are a set of rules which are quite formal. Take a look here: http://www.parkinsons.org.uk/forum_policy.aspx

User guidelines on the other hand, are a set of… well, guidelines that deal with forum etiquette and lay out principles for how we relate to each other on the forum. They should be easy to read and accessible. Most importantly, forum users should feel that they are something you agree with and can stand behind.


Are there rules that you think could help the forum to become an even more supportive and friendly space?

What kind of interaction do you value most on the forum?

What sort of guidelines might have encouraged you to post for the first time?

Is welcoming new users a priority for us?



Here are some other forum guidelines that you might want to take a look at:

Acrobat users forum:
http://www.acrobatusers.com/community/forum_guidelines/

Breast Cancer Care:
http://www.breastcancercare.org.uk/forum/viewtopic.php?f=2&t=25601

The Guardian
http://www.guardian.co.uk/community-standards

Channel 4
http://www.channel4.com/community/help.html

I look forward to hearing your ideas on this.

Ezinda
I have a beef about what I regard as the overly-restrictive rule that messages can't be posted in more than one place. There are occasions where it makes sense to draw people's attention to a post on another thread, because the message covers more than one thread's theme. I see the wisdom of normally only replying on one thread, but that can be indicated in the post.
Are other people irritated by the blanket rule, and like me, would prefer to see it relaxed? The revised rule would say something like, "Normally, messages should only be posted once. Exceptionally, a message may be posted in two threads if the effect is to draw attention to a post that might otherwise be overlooked by some members. Moderators will delete messages that are posted in several locations for no apparent good reason, or where a member persistently posts more than once."
Passeggiata .........nei boschi?

Just had to ask, sorry