I copied these posts from another thread to open up some discussion...

I'm up to whatever is going to work here...for the whole.

I've realized that this forum isn't the average forum in that the discussions can be had on various levels and maintained well.

Let's work this, y'all...

We might have a small PD community within this community and I think that's OK.

For instance, we could possibly have a subforum with conversations on the "political edge" (because so much discussion can turn to a political theme due to challenges), or the OT-social, or both.

I've realized something after spending some time with y'all (thank you for allowing that)...and that is that you're a very special group of people and alot of what can help you involves discussing the "difficult". Thanks for the PM's and for the convo here. It's helped me to know you all better. Thank you for embracing me here.

I'd also like to say that anything would need to be discussed and agreed upon before incorporation. *

Would you like to continue the convo here or would you like for me to start another thread?

KD

I want to add, that we (the admin and the core members) are making this forum. We're creating the needs for all PD patients everywhere who might stop by or stay due to need.

Let's create a comfortable "home".

If you could have your "dream home" online, what would it have?

KD

__________________



I have no idea of what this is saying or means? If you and the "core members' are making this forum then what do you need us for?

Who are these 'core members'? are they of this forum even?

You are creating nothing. You are providing a space for people to communicate within certain boundaries of conduct. It is the members here who have created this forum and what it contains is that which they have chosen to post about.

Now this is going to make you mad as well as some members here but this asking for personal private messaging is of no value at all.

If you want an honest opinion of what this forum desires it has to be done in the light of day so as all can either add to the comments or disagree but at least know what the intentions are and what is going to be agreed upon.

This is not a 'home'

It is a meeting place at best where people can come and address whatever they wish to speak about. As a Parkinson's forum then that is usually the main topic but not always.

That is where the moderators should come in and judge as to the acceptance of the posting and let the member know why it was judged as so.

If religion is to be tolerated and approved then so should be politics as well as any other topic that is allowed.

Other than this I don't see what you mean as the forum seems to function quite well as it is.

Everyone needs to have a break once in awhile and it is beneficial health wise to do so. It is not a pall put on the site it is only that that person needs a break.

The one thing is that everyone who comes to this site finds is that it is a fact they are free to post wherever they want to and to have forums set aside for different topics would be impossible for you to maintain and absolutely impossible to get them to use.

eg

I went to church last night and found the talk really stimulating and I want to tell you all about it. The talk afterwards in the lobby afterwards was about the new resolution brought forth yesterday to impeach the new president as soon as he was sworn in. I must not forget to tell what the new Neurologist had to say about my head transplant I had six months ago.

Response

Where to put this. Oh well put it in all their forums and sub-forums and let them decide. Too strenuous for me and I have a foot ache.

Besides I see KImmy Dawn here will put them all in their rightful place lol

forum
 

I'm assuming that you mean "we are [I]addressing [I] the needs" or something similar. You are right that the community results from the efforts of the admin and the rules and the handful of members who actually post.

Whether that is good or bad I am not sure. The flavor of the forum has changed over the last year and names that were once familiar have slipped away one by one. Again, I don't know that that is bad overall, but I can't help but miss some of them.

Maybe it is simply the nature of online existence to be ephemeral. It is so easy to strike one's tent and slip away into the mists.

Let's not forget though, that moderators and rules are needed because people don't behave....lol.

My idea of the perfect forum would be one in which the people can talk about most things [reasonable of course] and argue respectfully. There are people who hate religion and simply will not do this. There are people who think they should be able to tell other people what to post. Telling people what or what not to post creates resentment.

I don't understand why anyone thinks they should be able to tell people what to post. But they do, and they complain to the moderators when they see things they don't like.

I have always thought that it's the readers' responsibility to censor what they read, not the posters', or the moderators
So my idea of the perfect forum is freedom to talk religion and politics and people do it with respect.

And when you blow it - simply apologize.

paula

What about making a sub forum for "hot" topics /debates - then those who want to read and/or participate in topics of that sort could click on the sub forum knowing that there most likely will be heated discussion.
That way it would not stress or disrupt those that are not wanting that kind of interaction.
Just a thought:)

Well enough...
 

KD, you are a lovely person. What are you doing "fixing" our forum? Do you feel we need a leader? We have lots of leaders. I stumble into this threaed and find a whole bunch of Counselspeak statements. I have no idea why you feel this is necessaryl. Why should I imagine a home --yikes!! Whaaaa ..........

I feel like you are playing with us wit h this behinds the scenes intrigue. I thought your job was to protect us from the chaos outside and from the barbarians at the gatesl I didn' t com e here, in caase you don't get my drift, to play with you I have reael PD and real experience and I wouldn't awste jmy time pretending little games. Since you are a professioial caregiver, you will not take an y of this epersonally. I resent te attempt at manipulation. I don't intend any of this to be mean/ I a m just flabergasted at your ideas and have enough respect for you to want to help you undersand.

I am leaving my typing and my toughts as is (in the 'off" state) to show the number 1 reason IMHO why we drift away. WE GET SICKERl. it gets harder to participate, harder to type, harder to read (our eyes jump around--some fo us). fewer of th ethreads are intereting. our "on" time gets jmore and more precious.

I saw three of the finest doctors in the US in the last six days, and if anythig i should be sharing my experience and not ranting.

What episode precipiated this? For heae=vensake I go away for weeks or months at a time without makign a big announcement and no one misses me nad I com backa nd join in as best i can.

on a personal note I hope yur family is ou of danger.

Jaye
8 1/2 yrs since dx plus a decade of symptoms before thta
first post on a predecessor of thse boards in March 99

I feel I need to clear this up-
Maybe I misunderstood this post {below} of Thelma's mentioning that Kimmy could be of help. I was the one that told Kimmy and why she posted this thread asking for your ideas.

http://neurotalk.psychcentral.com/sh...18&postcount=3
Quote from above link-

[ Thelma

I hope you don't go too far away as I really really like you girl. You too Charley boy.

I know some of the posts have been really stressful and that is bad for all with Parkinson's.

Maybe Kimmy Dawn will come in and let us have her idea of what can be done. I think some of the other sites use some sort of icon or something to illustrate that this is a posting that may upset or stress someone.

But if you are as nosy as I am you will liik anyway to see if it is someone you know.

I myself think that some of the posts tend to go too far and last too long on depressing subjects.

Anyway leave it to her and we'll see what she can do to help.

Peace to you both]

so that is how this thread came about - and I still think sub forums would be a good workable idea for those certain subjects that may raise the blood pressure and stress levels.:)
But basically she /we are asking if you have thoughts on it.

Miss Jaye,

I curtsy to you. A fine dissertation; see one never knows what he/she will excel at. A fair and balanced thread; only I picture us all at Tara for some reason.

Good night,
Paula

I don't know if this is of any value, but I am a member of another forum concerning something totally different except that it is health related. Anyway there are two places you can go, I would imagine that you sould call them subforums, that are sensitive. You can talk about all the things that are too personal to go out on a regular form.

The thing is that you cannot just click on these tow forums, you have to approved. I know, Big Brother and all of that, but if, for example someone wants to talk about a hot subject, it tends to keep the trolls out as well as those who don't want to be bothered by reading material that they deem inappropriate.

Juat an ides,
mama

Kimmy ...
 

imho things are fine as they are. Some topics are painful to read but heck, I have PD, I gave up "nice" years ago, if you don't want to read them then don't. As for people coming and going, that is the nature and purpose of any online forum.

I cannot be bothered with sub forums, I like to have the chance to read everyone's comments in one place. If I don't find the subject interesting, I don't read it.

BT2 ain't broke so don't fix it, (imho).

Neil.

p.s. welcome back Jaye.

Jaye - Sometimes -- You are SO Right !!!!
 

Jaye - Sometimes -- You are SO Right !!!!

Anyone have too much time to spend on NT ???

thanks ,,, ken

There's more now that I've read other threads
 

Ken, I will cherish this forever. :D

On the matter of social needs, please note (from http://neurotalk.psychcentral.com/sh...ad.php?t=26233 )
From the above you will note that there has been one thread, restarted sometimes weekly and sometimes when it moved off the screen showing the list of threads, where people could keep track of one another, with only brief hiatuses, for upwards of TEN years, maintained by forum friends in succession as one dubbed another the heir, making ALL welcome and used for social contact only. As far as I can recall, the ChitChat/Rendezvous/ Chatterbox Cafe/ Weekly Checkin thread has never been used for inflammatory posts. This is only one example.

For long, dry periods, Paula has sometimes been the only social thread (other than the above) starter, but she has always been interested in what makes people tick, and has the personal restraint to handle a discussion, while providing enough controversy to get one going. ( :winky: Sad thing is, she only has a Master's Degree, so I have to use short words for her, as you can tell from her post above, LOL.)(She's definitely a lifelong friend, too.)

There is nothing I'm aware of that stops anyone from showing up to do their own thing as faithfully as Steve does to start the checkin thread. Through personal tragedy and trials that would stop Santa Claus, the man is always here for us and making everyone welcome.

OK, well, I've been put on a new med schedule, even promised I'd use a timer, so I'd better get those 20 pills lined up (not much, huh?) and figure out how to use the multiple-cycle timer I bought five years ago. Besides, this is about as long as I can focus on anything. What were we talking about?

Jaye

Well I never intended to start this but it has been as revealing as anything we have expressed to date.

I think the consensus of those that have posted and even those who have not is that we are just fine as we do it now.

I have included those who have not posted as if they disagreed I am sure they would say so. I take their silence as a yah.

I, me personally, want to thank Jaye for the courage and heartfelt caring about this community she brought out by leaving in her post when she was in what she calls her off period.

Her words speak volumes and I love it when she makes spelling mistakes just like me lol

I think the emphasis here is not on the members nor the site but on the fact that not enough time is given before action is taken.

This site is made up of people that need time. When a post is going along and the topic is getting out of hand there is always someone who can come in and lighten it up but the fact of Jaye and her 20 pills and others with about the same load to carry are not always up to it at that moment in time.

This forum needs to just moderate itself as it has done so many times in the past saving for the downright rude remarks and then only if repeated again. I have seen some of the most antagonistic statements made and just allowed to wallow for a day or two and disappear never to be brought up again.

Some like to argue and one of them is me, I admit that and have learned more that way than just reading placidly.

I have often wondered why when it is not done that way in real life that others like to become involved in arguments and not let the ones involved work it out. There now I have left myself open to scrutiny lol

It's a difficult way to communicate and let others see our weak side particularly if all we want to do that day is cry. Myself I can't ask for help personally and that is a fault that is doing me no good. I admire those that can let their hearts show.

Lots of the members here and elsewhere are good at that and have shown through the years that they can make a difference in others lives. Yet they leave when physically they feel overwhelmed by Parkinson's.

The Als forums I used to be in have all disappeared and are falling into oblivion save for about 10 to 20 people scattered all over the world. Here we have only one striving to be that one for all.

So this is my gut feeling that this forum will go the same way if those who say they can't type with one finger even can't be here because of Parkinson's Disease. Try typing with an eye focus as one man in Greece is doing now. He stays on one letter at a time or a common phrase till hits the screen and then gazes at another. He had to give up blinking as he can't control his blinking anymore.

So when some think I am harsh they have to come from where i am coming and see what is possible and what is really impossible.

Typing can be done and Parkinson's can be beaten and Jaye can post in an off mode and Thelma can continue to shoot her mouth off and and John Grohol can spend hours thinking of how to help people and KimmyDawn can sit today and wonder what the hell this is all about and the sun can shine and Thelma will get her drivers licence today with no hassle and tomorrow celebrate her birthday because she is now officially and old old woman who secretly in her heart of hearts wishes she were 17 again and could grow in a world free of hate and hunger and war and disease,

75 years and we still haven't got it right.

Thelma
 

I love you - I love your posts - keep on keeping on. Never quit. :hug:

Mostly, I want to thank Jaye for her kind words, and for giving me the opportunity to be of service by passing the Weekly Check-In thread down to me a couple of years ago..It has given me a chance to get to know you all better, to help others, and at the same time help myself..I remember how I felt when I landed at Braintalk in December of 2004..Scared, confused, frustrated, and overwhelmed, and you folks gave me the knowledge, the strength, the confidence, and love, to get on with my life..I hope that Ive been able to do the same..:grouphug:

On the other subject..Im with the rest of the crew..Ive heard it said many times since Ive been around here that debate is good for us parkies and that there has been a need for it, but unfortunately it has been severely restricted or not allowed at all either here or at Braintalk..I will give Kimmy credit for alllowing this debate on the subject to even take place, and for her willingness to listen, be part of it, and to try to find a solution to the request..At BT, I doubt that this conversation would even be allowed to take place..They would just delete the thread and ban your *** if you didnt like it..I also agree that debate make for interesting threads, and participation..For example, I follow certain threads like the Weekly Check-In thread for example..But I can view it anytime, and not in a big hurry, like I have to see it right now or I might miss something..Threads with debate spark more interest..and theres nothing worse than logging on, only to find that the "hot" thread has been severely edited or deleted..Its like.."Damn!!..I missed it!!..:( :D

I personally have a forum where I can go and bang heads..Thats why Im so nice when I get here..http://i106.photobucket.com/albums/m...nd_01/rofl.gif

Thanks for pointing out the slowness,
 

Thelma. The brain waves take longer to get across the brain, and that goes for thinking as well as movement. I read that somewhere.

If it's perfection you want, maybe you should arrange to get PD, for then you would be sure to know better than to want it. [later: this was meant as dark humor, not snippiness. i know thelma has her own burdens to bear. sorry.]

Perfection is a very limiting concept. It consists of trying to make yourself fit into a mold that someone, likely yourself, has already thought of and defined at some time in the past. If you're like me (scary?) and celebrate creativity as the best use of being human, then whatever you make or do is created by you, and as you continue to create, your work becomes something beyond whatever you already thought of, and maybe even synthesizes a bunch of ideas into a way of doing things nobody ever thought of in an unheard of way. Better than sitting there pounding on everything because you have a hammer in your hand and it's perfect for the job.

Perfection is static. Who you are is constantly being created.

(Mods take note:) Which is why we shouldn't rush in to fix things on the basis of one post by one person who thinks as fast as you do.

Time to go to the therapy pool for exercise, an excursion that will take up to three hours because I have to dress and undress myself in a little room. But I have a fridge full of food, and I'm going to make soup when I get back. :D

Jaye

OK :D

Thelma did post about using the Trigger Icon for those certain posts or threads.
Does everyone know where it is? {right below the posting box - the red ball with an X on it- I used it here on my reply - so you can see it}

Or even just put a "OT-hot" or "Hot topic" in the title -or some sort of notation
- I'm sure you all can figure out something simple that will work for you.

of course then everyone will click to see what the post or thread is about when they see that.:)

Best to just ignore and move on. Your point has been made. I am sorry but I just can't see myself discussing this off site so please no more PM's.

I hate being rude but I just can't put value on it.

i have been involved with forums for a vedy long time. first one i joined was mgh wwwayyyy back in the 90s sometime. been involved with some contraversial subjects, even started a few myself. been 86'd from a few of these places due to my decision to back up statements i had made that i deemed appropriate, but the lords of the manor apparently didnt. my big mouth has gotten me both into hot water, and out of jams in defense. i decided to open my own site to find politics are even nastier when you do that.

people show their individuality by making statements. not everyone will agree with them, and many times agruments begin, but lets face it.. it makes us think about life with pd on a much different level. it takes pd out of the statistical medical realm and plops it right in the lap of our humaness. things are pondered such as medication side effects, stress, cognitive impairments and pd then becomes more personal and the bond between sufferers becomes stronger. on a deep level, there is an understanding of sorts. what a person states may not be understood, but compassion for where they may be coming from is more acceptable and support then is true.

i have never found a support system equal to what is available in the folds of the online pd community. there have been many times i know i would not have found the empathy anywhere else. thanks guys for that.. thank you for this post and making my day again interesting.. chuckle.. we are still who we are.. aint we?

I have Parkinson's Disease, Parkinson's Disease does NOT have Her!


And it never will!

Laura,

Maybe you remember me from the Dumpster Gang on the porch, when I fought against having to advocate and tenacity was insisting everyone had to advocate back in 1990.


Vicky

of course i remember you vicki. remember dumpster. who could forget? remember tenacity too. she shared with me one of my favorite expressions. "God drops neon cows on our heads to make us think." Neon cows? He needs something big and bright enough to get our attention. last i heard she had a f dopa pet scan to find her plight wasnt pd afterall but some other brain thingy. after what.. 17,18 years? bet the neuros are chewing cud now. lol.. good to see you vikki.. how ya been?

Hi Harley, the pretty blond on a Harley Davison
 

Tenacity set up a web site which I checked on from time to time, but she no longer seems to keep it up. She had Chiari's syndrome, which could have been curable had she been accurately diagnosed. It was her efforts to have the patient have the right to request any test to help in the diagnosis of PD. She was a great promoter of F=Dopa scans. Unfortunatly, she also was one of the first receipients of DBS surgery, which was of no value for her eventual true diagnosis. After the surgery she suffered from a streph infection that left her with permanent brain damage. So many years ago. I remember you suffered from severe illnesses even before you were diagnosed with PD. You've had a harder life than most. Maybe that is why God gifted you with so much creative/artistic talent. It is a wonderful talent to help yourself and others through the hard times.

Love,
Vicky

Holy cow! (neon of course) This is whawt I love about this forum. This so interesting to me I can't imagine why any one would wawnt tto change it. I am only afrraaid it might become some homoginized bland and boing place of interest to ???? I love discusionthe debate, the social the sientific the poetic the aartistic musical Paastings postings sttories feelinggs lifestyles dx's px's and rxx's ideas imaginations andd proclomations even aadministrations. Thelma here is my "yah" along with many thank yous to everyone who activelly posts ,to those behind the sccene who keepeverything working, for those who care so much for others for those who pray, for those who advocate aand forr those who who may not be any of the above becasuse you give porpose to life. plese forgive the state of my typing (is there a spell check) this is mthird attempt on this and I just don't feeeel like trying to correct .

Freedom of Speech
 

Freedom of Speech is a most important right. It is our right to be wrong and our right to say the wrong thing. Who's right all the time? Who has all the answers? Freedom of speech is how the truth is known. It's a self regulating process. Very few governments allow Freedom of Speech. An unregulated internet is emerging as our last true place of freedom. This forum is fine the way it is.