Parkinson's Disease Tulip


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Old 09-29-2006, 09:22 AM #31
DJM1 DJM1 is offline
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Default It's A Good Thing I'm Not Thin Skinned

I hope Jaye doesn't mind me copying a comment she made to me in an earlier post: "Glad you found us!!!! I tried to send you an email, don't know what happened to it--maybe you were one of the many that I trusted the BT1 PM system to get in touch with.. Oh well." Thanks, Jaye! It's nice to see you again too.

I've been a part of Braintalk in it's many convolutions since the Dumpster Gang days - a long, long time. I've seen cliques come and go. At one point, RadioBill was the man to be, Michael at another time, etc. Posters who through no fault of their own, were elevated to Superstar status with a groupie following. It's not a healthy situation as the cliques, by definition, exclude others from belonging, from participating.

There are many who lurk, possibly because they're not sure their contributions will be appreciated, not sure they can break in. I think that was a problem in Braintalk1 and hope we can avoid the same issue in Braintalk2. A little sensitivity to others feelings would be nice.

Are my feelings hurt? Yes, I guess they must be a little or I would have just let this go without comment. I'm delighted that Braintalk2 exists, missed the sharing of common experiences that we all have. I think we have an opportunity to create Braintalk2 in a mode where all posters will feel appreciated.

I am 46 and have absolutely no one else in the world that I know personally who understands what it means to live with PD. My bestfriend, someone I've known for 33 years, was recently shocked that I couldn't tie my own shoes while "off" yet had no problem doing it two hours later when I was "on." She didn't fully understand the tremendous swings I have in my physical functioning, but the group gathered here does. I volunteer a lot at my sons' school, never sure if I'll be able to carry out the task I've volunteered for at the time when it's required of me. Others don't understand my lack of reliability - all of you do.

Our common experiences with PD tie us together despite differences in other aspects of our lives. That's why I keep coming back - because of the comfort of shared experiences, the fountain of information, and yes, the friendships that I've made with others online. Let's make Braintalk2 an EOF - Equal Opportunity Forum - okay?

Donna
DJM1 ~ DJM ~ Internetqueen
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Old 09-29-2006, 11:09 AM #32
paula_w paula_w is offline
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I know I run at the mouth about advocacy and apologize if I make people feel uncomfortable. But truth is, this is home to the best and the brightest [I don't flatter people falsely] so I make my pitches.

Everyone should post away, I get sick of talking about the same thing all the time.

sincerely,
paula
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Old 09-29-2006, 06:39 PM #33
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Well now I'm adding this in because I'm not sure what cs or Donna meant. I post much about advocacy and don't really expect an answer; if I do get some -fine- it is discussed. Vague statements like cs's first post in this thread and Donna's 'equal opportunity forum' leave a regular poster like me thinking "It must be me." i understand that everyone wants to feel included, but if you don't post, are the people that do post responsible?

Knowing Internet Queen for awhile,and liking her always pleasant and reasonable posts, i feel that we can talk this over and be specific, i'm not thin skinned at the moment but am paranoid and would rather just get it out and resolve it. This is one of the best forums on the internet in my opinion and we've worked hard to make it that way. Can we just talk it out? I have a few friends here but don't see a clique. i am usually bugging people to join our advocacy group, but its a hard working group of people. Exclusion is not something i would deliberately do.

But it may or may not be about me..I don't know.

Can you tell I come from a generation of Pennsylvania tee-totaling conservatives who automatically assume guilt for everything .....lol? Especially when I didn't turn out to be too much like that.

So cs and Donna, could you be more specific?....i remain sincerely, paula
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Old 09-29-2006, 08:30 PM #34
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Default Paula, as I read it ...

the preceeding few posts were to avoid anyone expressing the feelings your post expressed.

Keep on posting, it's invariably good stuff, you don't have to ask anyone's permission.

Anyway, to return to a previous point of mine, does anyone know where Rationalist is ??

Aftermathman.
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Old 09-29-2006, 09:06 PM #35
paula_w paula_w is offline
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Default where in the world is R?

http://www.boardtracker.com/cgi-bin/...98&member=1624

thanks I'll say no more...here are R's posts maybe you will stumble on his email i haven't seen it yet.

Paula
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Old 09-29-2006, 09:34 PM #36
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Default Sometimes Arrows Hit the Wrong Target

Paula, I'm sorry that my post has caused you some distress. I never intended it to hurt anyone, definitely not you, and just hoped that giving a "heads up" about being considerate of each other would filter through. I hope you don’t mind that I’ve quoted you below in order to respond to your questions.

Quote:
Originally Posted by paula_w View Post
PAULA: .... Vague statements like cs's first post in this thread and Donna's 'equal opportunity forum' leave a regular poster like me thinking "It must be me." i understand that everyone wants to feel included, but if you don't post, are the people that do post responsible?

DJM1: Yes, I think we who post frequently do have a responsibility to make all with PD feel welcome, to make them feel they are included. Real life example: Stay at home moms (like me) often making working moms uncomfortable when they attend school events. It's not that we SAHM's mean to exclude working moms. We just know each other better, feel comfortable with each other, have a history of helping at the school together so the SAHM's cluster together making working mom's feel left out. It's not done maliciously or intentionally, yet the result is the same as if it were done on purpose. Same thing happens on forums.

PAULA: Knowing Internet Queen for awhile, and liking her always pleasant and reasonable posts, i feel that we can talk this over and be specific, i'm not thin skinned at the moment but am paranoid and would rather just get it out and resolve it. This is one of the best forums on the internet in my opinion and we've worked hard to make it that way. Can we just talk it out? I have a few friends here but don't see a clique. i am usually bugging people to join our advocacy group, but its a hard working group of people. Exclusion is not something i would deliberately do.

DJM1: Thank you for your comments about my posts, Paula. I certainly could never be considered brief or terse in my posts as I type like I talk - a lot! Sometimes there are just misunderstandings because other posters can't see our facial expressions, can't read our body language in print. For example, the words "I'm going to kill you" can be interpreted as a serious threat or just as kidding around. If you could see someone's face as they spoke those words to you, their meaning would be obvious to you. But, in print, do you take it as a joke or a threat? That’s an incredibly extreme example, but I think it makes the point.

PAULA: So cs and Donna, could you be more specific?....i remain sincerely, paula
Aftermathman, the intent of my post was to make others think about the effect their words may have on someone without pointing fingers at any specific people. I never would have expected Paula to feel bad because of what I wrote, but then that goes back to the analogy about misunderstandings that I used above. Paula, you never entered my thoughts as I wrote my first post, yet you ended up feeling at fault somehow and I’m sorry for that.

So without being specific, my hope is that all will be treated equally on this new forum. I hope that it will be even better than the original Braintalk, building on the many great aspects of the BT1 forum while leaving some of the not-as-shiny aspects behind.

Last edited by DJM1; 09-29-2006 at 09:40 PM. Reason: Some of the Paula quote is mine, not Paula's. Technical difficulties!
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Old 09-29-2006, 09:42 PM #37
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Thanks Donna, for reassuring me that this IS truly a safe place to vent, talk, and share.....my distress is due to blood chemistry, not you. Ain't this PD more fun every year.

Let's just forget about it and by the way.....welcome!~
paula
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Old 09-30-2006, 05:28 AM #38
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Default Donna

I must be mistaken in what I was t hinking.

Last edited by Jaye; 09-30-2006 at 08:41 AM. Reason: see message
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Old 09-30-2006, 06:06 PM #39
toadie toadie is offline
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hey how yall doin?
i haven't been around much in the last few years, been hanging out on motorcycle forums. i'm 42, creeping up on 16 years with pd and meds and all the baggage that comes with it,lol. i tend to be a little rough around the edges and that's ok around there.

lately, i tend towards taking things at face value,no hidden messages, nothing implied or inuendoes, it all just takes too much time and energy to walk, ya know?

like if i ask what's wrong and you say nothing. then we be cool. it's just easier for me that way, ya know? lol

i think i'm pretty plain, don't think i'm inconsiderate, i realize that most of us are highly medicated insomniac neurologically impaired. at least i have been for years, lol

at any rate, it sure is nice to be able to make contact again. have a good week end
take care
tammy
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Old 09-30-2006, 06:20 PM #40
paula_w paula_w is offline
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Quote:
Originally Posted by toadie View Post
hey how yall doin?
i haven't been around much in the last few years, been hanging out on motorcycle forums. i'm 42, creeping up on 16 years with pd and meds and all the baggage that comes with it,lol. i tend to be a little rough around the edges and that's ok around there.

lately, i tend towards taking things at face value,no hidden messages, nothing implied or inuendoes, it all just takes too much time and energy to walk, ya know?

like if i ask what's wrong and you say nothing. then we be cool. it's just easier for me that way, ya know? lol

i think i'm pretty plain, don't think i'm inconsiderate, i realize that most of us are highly medicated insomniac neurologically impaired. at least i have been for years, lol

at any rate, it sure is nice to be able to make contact again. have a good week end
take care
tammy
I just have to give up worrying about how many times I've posted today...I want to answer you toadie.

What Toadie is leaving out is that as she listens to her heavy metal and loves motorcycles, she also is an artist and a talented, sensitive writer. She is way too young to have PD for that long and dresses up real nice at weddings [We attended one together].

Don't be a stranger; I need it straight too as it is getting more difficult to understand where there is doubt. A term was coined here for that by Greg Wasson - CLOGNITION. That post should be posted in the oldies thread if anyone can find it....the name stuck and is appropriate. All is well - that's where PM comes in handy.

I don't like being vulnerable but I guess it's time to get used to that...glad you appeared Toadie,,,,,,

stay in touch,
paula

Going to watch syrianna or however you spell the George Clooney film....watched it once and if you've seen it you know you have to listen to every word...it is compelling.
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