How easily we forget what people do for us in our efforts to get something we perceive we have a right to.

Life is a privilege. All perceived rights are in our "heads". Spend a week at Huffington Post and then complain about freedom of speech. Our disagreements are no comparison to the trash on those sites. I don't think anyone here wants those kind of rights.

What we have here is an outstanding forum, with outstanding administration, trying to be even better. But we will screw up.....then you can go for the throat, lay guilt trips, or you can understand, resolve it and forget about it. Most here do the latter. The key IMHO is - don't tell someone else how to feel.

Paula

I do need to say one thing, though, as clarification.

Our community guidelines still exist, and they are not going away anytime soon. My experience with online communities is that, even with the best of intentions and the most mature group of people in the world, the community as a whole functions best with a small, basic set of rules.

I basically waived the one rule here, the one time, when I understood what the intention was. But that doesn't mean the rules don't apply here, or to all the members here. They do and they will continue to apply. It protects all members, even those who feel self-conscious or shy to speak up.

I also want to say this, because I think in the past, some of the community team here, including the moderators and co-administrators, have taken a lot on the cuff while trying to enforce the rules in this forum. And people cry out when they are just doing the job they volunteered to do.

But I will have less and less tolerance for any type of disrespect shown to my co-administrators or moderators. Without them, this community probably would've already self-destructed. Maybe it hasn't all been intentional, and maybe sometimes we forget that these are real people, just like you, with feelings that can also be hurt. They have tough skins, but when they get beat down and down again for just trying to uphold the guidelines, well, enough is enough.

This isn't directed to any particular member here. I just want to make it clear that we will still do our job here and in all the forums, as equally and as democratically as we are able. We're not always right, we're human, we make mistakes. And we'll try and own up to them when we have.

But I ask for your cooperation in this as well. And that if you want to discuss further administrative community issues, please do so on the Community and Forum Feedback forum (because, well, that's exactly what it's there for).

Thank you very much,
John

Yeah, my name is Kim. I live in southern Ohio, after moving here from Hawaii as a teen. I was the daughter of a 22 yrs. marine that passed away two years ago. We moved alot, needless to say.

I live with TN and it's a daily struggle for me, though much better with pain management. The biggest recent struggles for me was my daughter's pregnancy where she found out that she has an auto-immune disease and was very ill because one should not get pregnant with it active. The baby, one month ago today, arrived safely. My oldest is pregnant and due Dec. 7.

I'm raising my four year old nephew and have had him for three years next month. He's my joy and having a hard time adjusting right now. My brother and his girlfrend don't do very well with their struggles.

I like jeans and T-shirts and have recently gone from wearing makeup and doing hair every day, to not. It's a change for me, but I'm glad to let it go. I love to go barefoot and sit on my porch.

Thank you everyone for the kind words to me in PM, and for the words in this thread...

I have something to say with HUGE regret that I haven't said it sooner. For that I would like to apologize to my team members, DocJohn, and the members of this forum who were confused by my actions, or lack thereof I should say. I was dealing with much at the time and shouldn't have started something that I couldn't play out...whether or not I could have predicted some of the response.

I'm tired. I've been tired for six months. I've been dealing with my own pain and dx., but living with some of the biggest fears and concerns that I've personally known in my adult life...the wellness of my daughter and the life/wellness of my first grandchild (now here safely).

I was just coming back to "me" (I'm human and was still dealing with much) when a post of upset was made here on the forum. It was brought to my attention when a member stated that maybe I could help and that the member should keep their head up (paraphrasing). I posted, but because I didn't want to hijack the thread, I began a new one about the comfortable home.

Let me first explain my words there...when I said comfortable home, I was referring that for many here, this is their home forum here at NT. It's just a phrase I use...nothing more, nothing less.

I simply wanted to help, and I feel my words clearly showed that intent. Those that didn't find that help appealing could have stated so...kindly...and many did.

I came here because I'd heard about what happened with BT and wanted to help. Further, I have TN and had never been able too talk with others like me. I was excited. I stay because I'm now committed to NT and care for its members...pure and simple. In that, I care for the guidelines of NT as many expect to read and be responded to within them. I will continue to post within them, and I will continue to uphold them for the whole, fairly and as consistently as possible.

That's me, and I will continue to be me and be here...again, because I care.

KD

Kimmydawn,

Thank you for the post, I can relate to your personal experience directly in my own life.

I'm sorry for my ignorance, but I can't think of what TN is.

Paula

Adding - I used to live in Hawaii too!

I apologize. TN = Trigeminal Neuraligia = pain in side of face...nerve pain.

In my case, I'd had a large cyst in my right maxiallary sinus that required a procedure in which they cut through many nerves in my face. I actually had this particular procedure twice...four in all. The last probably not necessary as my pain was stemming from either the damage from the original cyst or the first surgery.

I dealt with it for 16 yrs. with no dx and ER visits for pain. I lived in fear of my pain and even thought I was crazy at times.

My life has been so much better since the dx and management.

Thanks for caring to ask.

KD

Thanks for the explanation and that's encouraging to me..I'm seeing a pain management specialist (everyone is a specialist) today for the first time.


paula

pain management saved my quality of life. i do have a good dr who is also a neurologist, so that helps. he hears me when i say that i don't want the "hard stuff" and that i'll manage what i can on my own, etc.

please make sure your dr hears YOU.

i'm available by PM if you have any questions.

KD

john;

I run a 1097 member DBS Surgery group. To date we have in excess of 21,000 posts.In that time I have censored 2 posts and kicked 1 person out of the group. it;s been my experience that if you let people know whats expected of them, they will self-police quite nicely.

I'd remind you that just because something offends your sensibilities, that doesn't necessarily offend ours. Often offensive posts are a cry for help. We cannot respond to this if the post is deleted.

We are all here to help each other. Please be circumspect in applying your rules.

Dear Curious;

I am sorry you are embarassed by us. We MUST become thick-skinned about things. I have been accused of being drunk, shoved out of the way for moving too slowly in the mall, etc. I have fought with members here. ( love ya Tena!!)Yet we always greet each other with a big hug. There is only one PWP that I have no use for. All the hundreds that I know, I think the world of.

Sometimes life is tough; we all need to learn how to get through it. ONLY another Person With Parkinsons can understand what we go through. This is not saying that you are not a caring individual, I am saying that you all, (thankfully) do not know what we go through. Rules that apply to the public at large simply do not work for us.

Anger is a useless emotion here. Caring about your fellow man is what it is all about.

If you strike a post or kick someone out, you have failed in your duties, IMHO.

We can self-police and do many times. It is usually non-PDers that cause trouble.

Please wield your power with caring and respect. Look at things through our eyes, (or let us look for you).

I bet I could get at least half your support group to take you up on your offer of help.

TOGETHER we can make this an even better forum than it is now!

Charlie Black, 57
Originally from Richmond KY. Grew up in Orlando, FL

17 years since my diagnosis. bi-lateral DBS-STN at UCLA in 2002.

Graduated from University of Central Florida with a degree in theater in 1972. Worked at Disneyworld for 3 years, doing stage and film lighting.
Moved to Hollywood in 1975.
Did commercials and features for 10 years
Then sitcoms as a chief set lighting technician.
Head of the Class, my Two dads, ad infinitum

After my diagnosis, I quit being a chief set lighting technician and started operating computerized lighting consoles. Finished my career in 2004 after 8 years on Frazier.
married to a wonderful lady, Bonnie. we have 5 children (and 2 dogs, 2 cats, and 2 birds!!) girls 22,19,17 and twin boys 13.

My wife does theme park entertainment and operations costumes for Disney world wide. I can always find her in a crowd, just follow the laughter!! She has done it all!! 2 Superbowl half time shows, Tokyo Disneyland and Disney Seas, Paris, Hong Kong to mention but a few.

The interest and emotion in this thread has been unusually high and yet we have been pretty civil about it. I'm proud of us, actually. From docjohn on down, we have done pretty darned good.

I will raise one point that is worthy of thought - who "owns" this place? Now I know that docjohn legally owns it but the question is a little trickier. Who "owns" the community? If docjohn pulls the plug it is gone. But if everyone stopped hanging around it is just as gone. Even more tricky is the fact that if the people we each disagree with go, the community will be blander and less robust. I think the answer is that we all "own" it in that we all create it and we are all needed to make it the best we can. But with "ownership" goes responsibility.

It was before my time but is there anyone who was involved with the WELL (Whole Earth ELectronic Link)? I seem to recall them struggling with some of this but it seemed so arcane then.

I wrote this and posted it in the admin forum on the 23rd because I knew I needed it off of my chest, but I knew I'd probably lose 'my job' if I put it on the public forums where it belonged. But honestly, I can do my job which is to reach out my hand when someone is in need without this title, so by all means - just take it away from me if what I am about to do deems disciplinary actions. I don't see myself being banned as I am not personally attacking anyone, but instead - defending those who are attacked constantly without action taken towards those whom I feel are guilty enough to at least issue an apology but are too wrapped up in themselves they can't. If I am banned, I guess it was worth it and my only loss would be those people I feel I can help via sharing information, support, etc. - which is what I thought this website was for. Not a home for cliques who picks who is worthy of visiting their forum.

This doesn't belong just here, it belongs all over the forums in every area where things like this take place. This thread in specific, is just one I selected because I know while some people aren't posting here, they are reading it and they need to read MY OPINION. We are all entitled to one, right?

This may be my final post depending on exactly how far I plan to take this. I say this because today I am taking it personal and I am most certainly making it personal.

I am going to make one thing clear. First and foremost, I am not stupid. I know the difference between a debate, a disagreement and someone being downright mean and bullying.

This probably isn’t the best time in my life for me to be doing this, and I am pretty sure I am on the verge of a meltdown – or possibly having one as I type this. This is how my week started.

I had 9 vials of blood drawn, which is the third time this has been done in the past 9 days. I look like a heroin user. I have been having my womanly cycle for the past month, literally. My partner finally admitted to being sick of me being sick, which was perfect timing as it was a moment after I had accidentally not made it to the bathroom in time and threw up on our white carpet. My brother left rehab after an outstanding 2 day stay and continued to call me 32 times with various suicide threats which he frequently does when I won’t give him money. I only order him a pizza because I do not want him to be hungry. He left the worst goodbye voicemail on my phone which triggered my gag reflex prompting me to throw up, which is something I’ve done so many times this week I’ve lost count.

I am being treated for Lyme Disease which is quite unpleasant considering I already have enough pills I have to take every day that I am really just tired of taking them. Within 15 minutes of taking a pill, I throw up in the most violent manner it made my morning sickness 9 years ago seem like a day at the park. I don’t know if it’s the Parvo or the Lyme, but whatever it is causing this pain is the closest to hell I ever want to be. It has gotten so bad I cannot even walk up my own stairs to sleep in my own bed. I cannot finish folding a small load of laundry because my arms shake due to being so fatigued. Every part of my body that bends is swollen. This is not where I wanted to be when I was 30. I did not want to collect ‘ologists’ as my hobby. I wanted to work at an animal rescue. But I can’t work at all, because it’s constantly one thing after another.

It’s not like I even complain about it every day either. As a matter of fact, I don’t even say anything half of the time I am sick or in pain. I suck it up and hope it passes as fast as it showed up. But this time, it’s not passing – it’s staying and it’s constant. I can only hope my tray of needles with cortisone I am expecting next week will offer me some comfort because at this rate, I am turning into a very bitter person who loathes waking up.

Do I want or need pity? No. I have been sick, literally, since I was an infant and guess what? There’s millions of people out there worse off than me, people who have felt worse pain; either physically or emotionally for years with no control over it (or even worse, having no feeling at all). There are people out there who are in pain but haven’t been given a diagnosis so they don’t have a group of people fighting for a cure for them. They have nothing but hope. You see, I don’t believe one condition be it diagnosed or not is more ‘valid’ than another. Some things hurt people in different ways and regardless of the manner – they are still people with something they shouldn’t have to deal with. Do I feel worse for people terminally ill than I do people who aren’t terminally ill? No. Because we will all die, it’s something you cannot escape. I don’t think people should have to have their lives shortened, or people have to live their lives into the ‘acceptable’ age of natural death but be in pain up until those days. I think a broken heart is just as painful as a broken leg.

I don’t think how I feel now is a reason for me to be mean to people and I was worried this may sound mean, but right now - I am making myself feel worse sitting here dwelling on how upset I am. I was told yesterday they probably cannot reverse what’s been done to my body. So now I am sharing the same symptoms my 85 year old Grandma has, the difference being she earned hers with age. I have never ever thought to myself, though. If someone, for example, my friend was having a bad day – man troubles or something. Or she just wanted to do something girly and cheesy or wanted some peace.. I didn’t sit there and scream “I have Epilepsy!” in her face and assume she is selfish for wanting things to be ‘peachy’ or think she doesn’t understand me, or whatever. I can’t even fathom how I can say any of my conditions are a card to use to lash out at someone. If I’m having a bad day and I’m cranky, sure – my loving partner may end up hearing a bit of an attitude. But would I be mean to him for wanting to help me? No, that’s absurd.

I am sure those I think are guilty of this could easily read this and know exactly what I am talking about. And I am sick of it. I have so many bad days, bad weeks, bad months and bad years and never do I use them as an excuse to pick on people. It may seem that way now, but I’ll chalk it up as icing on the cake. It is something so petty that I can’t understand why it goes on.

I can’t help but think that people want to view us as usernames or avatars, but still find it completely acceptable to lash out at us like we are humans. It’s a huge contradiction. Mods are invited to say something and in some cases, requested to intervene and then lashed out at and ‘kicked out’. It is almost like some people enjoy this because they know we are expected more to watch our words and always be civil. We’ll fire me then, because it’s about time the tables turn.

I am sick of the same group of moderators being bullied by the same group of people. It isn’t just debates or differences of opinions. It is people blatantly baiting them in just so they have someone to toy with and it is sick. Maybe everyone didn’t have a Grandmother. Most people I know their Grandmother told them the golden rule, “If you don’t have anything nice to say, don’t say anything at all.” My Grandma said, “If you can’t say anything nice, keep your mouth shut.” Whatever the wording, it applies. The Guidelines and TOS have nothing to do with this, it is masked and subtle baiting and it’s gotten too old for me to sit back and let people attack others.

People who don’t openly say they are fragile, people who are having family problems, marriage problems, health problems, etc. Just because it isn’t laid out on the table doesn’t mean you have to treat them like they are made of stone or they are your personal punching bag. I am fed up with my friends being hurt when they have enough to deal with as it is.

Kimmy has been nit picked at for so long I lost track of time. No matter how subtle it is, as stated I am not stupid nor am I blind. Someone who tries their hardest to help out does not deserve to be treated in such a manner. It’s hard to believe someone is lashed out at for being nice. Like somehow being nice or wanting peace is bad? Guess what? Everyone hurts in their own way it is NOT nor will it EVER be a reason to treat someone in a manner that some users and staff members have been treated. I am very fortunate that I have not had to deal with this –yet- but it doesn’t go to say it does not have any impact on me, because it does, when I can tell others have been hurt by the actions of someone else who were behaving in such a selfish manner they have grown blind to all other people with other conditions and have it set in their mind only one physical or mental state truly can be validated.

This is a place where I would come to help people, and to get help. To discuss things and to share information. There are so many websites where it is welcomed for people to attack one another, it upsets me to see it here no matter how veiled it may be. There are so many small communities within this community it would be impossibly for everyone to agree. But it is very possible some people grow up and just use the Grandma Rule and not even say anything if you can’t say anything nice – or at least MATURE and RESPECTFUL.

There, now that I have that off of my chest I can maybe go back to recognizing people who use this forum for it’s intended purposes. A large number of us all over this website have been discriminated against. I, personally, have never decided that since someone discriminates against me that I should do the same to others. Never. Ever. Period.

If it is my job to watch people demand a raised level of treatment and try to justify discrimination against others, and belittling others - then this is not the job for me. You can flame me, or even get my post deleted. But this will be the day you can all remember the quiet one in the back finally cracked and stood up for her friends like she should have from day one.