[aftermathman]

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.

[KC Tower]

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

Originally Posted by Jaye

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.

............

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

thanks ,,, ken

[Jaye]

Originally Posted by KC Tower

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



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

thanks ,,, ken

Ken, I will cherish this forever.

On the matter of social needs, please note (from http://neurotalk.psychcentral.com/sh...ad.php?t=26233 )

...Thelma, it was Scott who had Rendezvous at the same time that I took over Chit Chat from Cloudy, who had it from Bob C, with GregW1 substituting occasionally. There had been some friction--I won't call it bad feeling because it wasn't--between the chatroom types (Scott's crew) and the more verbose bulletin board types (the Chit Chat crowd). Scott and I got together and merged the two into the Chatterbox Cafe, taking turns hosting it. interest in that waned, and I did Up Close and Personal for a while, but i wasn't an era for informal contact, and I stopped altogether.

Then you, Thelma, asked why we didn't have a check-in like some of the other boards, and I started up again with weekly check-in, which I later conferred on Steve, who is the best yet. I have met Steve in person, and he's as great a guy as you think he is. I also met Cloudy a couple of times and made lifelong (so far) friends with GregW1....

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. ( 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

[Thelma]

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.

[jeanb]

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

[stevem53]

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..

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!!..

I personally have a forum where I can go and bang heads..Thats why Im so nice when I get here..

[Jaye]

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.

Jaye

[Jomar]

Originally Posted by Jaye

(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.


Jaye

OK

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.

[Thelma]

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.

[harley]

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?