I am really so hurt and offended by the uncalled for response to my posts. That people feel it is necessary to resort to personal derogatory comments and openly wish to specifically insult me, has really been shocking.
I have only ever been honest open and genuine. I have tried to speak with care and consideration. If you don't like what I contribute that's fine but there are ways of saying so without being unsupportive. Thanks to those who have helped me over the years.
I am so very, very, very sorry to hear this!!! What happened here? I don't read every post, so I don" know.
Please, somebody fill me in. There is no need to insult anybody on this site. We have way too much to deal with having PD to have to deal with yourself through fellow PD here's
I'll apologize on behalf of of anybody that has said anything hurtful to you.
Eva, you need to read "Dancing with the Devil". I hope Collen reconsiders. Her posts make people smile & her words & thoughts are written so well . She shouldn't let one person get in her way. It was a contraversial subject & it was taken too far & too personal.
I missed this too. I've been very busy lately and haven't kept up too well. I only know that whenever I see that the post is from you I get a good feeling and a smile on my face looking forward to what you have to say, please don't go away!
CHH, this site exhibits all types of opinions and at times sharp elbows. Your input has been so entertaining and uplifting to so many of us that you shouldn't leave. Come on back and dance with the "devil."
It's hard to dance with the devil when you're ill, but Cillen, please don't leave us. There was a lot of us to thank you for your post. We need you on here. What can I do to get you to stay? 💕💕💕Eva G
Some people see evil everywhere and fell the need to make sure everybody sees it to. I do not read the news I do not watch the news.
There are far more good deeds done in a day than bad deeds. but they don't report the good stuff.
I have been posting here for about 5 months and i think i helped make it a better site. But trolls like metacognito and john pepper make it hard to keep a good vibe about this site.
I too have decided to take leave of this site for a while.
Perhaps you missed 'abby1933' referring to me as a "troll"??? I was being nice (comparatively) - surely their are legions of readers like yourself that live for the lengthy details of his crossfit exploits...
Inappropriate behavior! Freedom of speech does not give you the right to insult people. How would you it make you feel if I called you a fat pig? Feel nice? This is a PD support Forum. If you can't be supportive of othes here then please zip it.
Metacognito, I learn a lot from your posts and have my spirits raised with Bailey's posts, It's good to see someone fighting and winning the stereotypes of PD people. Room for all to give and for us to take ..
We are entitled to our opinions, and also to disagree with others' opinions, but we don't have to plunge a knife into the back of someone we disagree with.
So stop with the abusive behavior. Calling others names is unacceptable. How does "Moron!" feel I would venture a guess that you would be offered if I used that kind of nd of epirhet against you. Where is the kindness and compassion? You can disagree without being disagreeable!
I also basically left this forum but just check in occasionally. I got tired of the drama personal attacks and negativity. I have found a much better source of information on FB under Parkinson's Healing.
Please don't go. We have only just got into contact again. Let those criticising you go, but please not you. You are so brave and knowledgeable and have taught me so much. If you feel you cannot continue, then I shall not post any more. Your wisdom is the reason I log onto this Site. We need you and people like you.
It's a given that on a website or in an email group you're welcome to disagree -- just remember to take issue with the idea, not the individual. I manage an email group that has certain very basic rules and every now and then I have to run the list again just to remind the one or two combative types that they will get bumped if they wage personal attacks. They get ONE warning. I just won't have people's days ruined by rudeness. BTW do we have a website manager here who can clarify the user agreement?
If one were to take the time to actually read the sequence of 'Dancing with the Devil' posts about the motivations of Big Pharma (BEFORE reacting), the more discerning minds may note that the eventual meltdown first began with the insinuation (by the author CHH) that those holding or expressing a more cautious view of those motivations than she, did so solely out of "ignorance" - "I have met dozens no hundreds of dedicated passionate intelligent fearless people desperate so desperate to find solutions for us in the best way they know how. I won't have their commitments hard work and effort's trashed through ignorance."
My brief reply simply (and civilly) offered an 'alternative' view on what I felt to be a questionable definition of "ignorance".
Then, despite claims of having been taught tolerance of other people's views in her youth, in return for expressing mine I was deemed (by her) to be "ignorance personified", then ultimately portrayed as the villain in the matter(?). I guess I'll just have to add this to the mysterious effects of PD...
I have to agree with MC--his initial reply was to put forth an alternative view of the pharmaceutical industry. Unfortunately the response was to take it as a character attack. Wouldn't a better approach have been to step away from the forum and send a PM to MC to ask for clarification? Unfortunately this thread has taken on the mentality of watching a train wreck.
I have made complaints to the moderator about the needless aggression of particular members of this site and had no communication from them enquiring further details. I'd suggest that you do similar Colleen and then maybe action will be taken by the moderator who rarely moderates.
I am so sorry to read this post. CHH offered so much to this site. I hope she is just having some bad days and will feel like checking in with Health Unlocked again. Her posts were always informative and helpful. I hope she is able to see all the replies still and will reconsider. Since her name now says "Hidden" maybe she can't see the replies. I hope I have never said anything that annoyed her.
I'm new here. Can't see packing up your toys and going home if someone offers a different opinion. My husband is a retired physician, a close friend is a statistician for one of the biggest pharmaceutical companies. He's told hair-raising stories of how statistics can be used and abused to achieve desired outcomes. We USA people have to pay all the research and development costs and others enjoy lower cost drugs. I have PD and am thankful for both meds and alternatives which hopefully complement each other. I want to hear all sides and try to find what really helps. I've been on c/l and Neupro 4 months and just completed the Big exercise program and can see real benefits to the exercise. I am now much more able to do things I could not do 6 months ago.
Please let us set aside vitriol and attacks and just try to help each other. There are surely better ways to get attention and sympathy. Life is way too short and uncertain to waste one minute being angry and bitter.
Point taken, Ann. But there is a big difference between offering a contrary point of view and being just plain contrary. I enjoy a lively exchange of ideas and opinions, but personal insults pollute the water.
Unfortunately, abuse by amoral profit seeking enterprises (a.k.a. big pharma) is commonplace. Here is an entire book on the subject by an MD: Bad Pharma: How Drug Companies Mislead Doctors and Harm Patients
Helen, please can you confirm to the group that metacognito has been suitably chastised for this matter. CHH did not deserve the abuse from this troll.
While I can appreciate objecting to someone's opinions, responses, what have you, I think the name calling is inappropriate. MC and I have indeed crossed paths--we handled the misunderstanding via PM. MC is a pwp same as me, same as anyone.
It's all a mute subject as I have read in a post from the administrator that MC has had his account pulled.
I was given my DX 2011 so yes we are all the same, I also say we have all the same rights and indeed responsibilities of respect too - within this forum.
MC is very angry at the Phama companies and holds a belief that a web of greed and insincerity is behind today's PD research. He's welcome to his opinion, however bullying and name calling is not acceptable..
If you read my previous posts I was not calling for his exclusion, just that he be chastised and reminded of basic internet manners.
This is all very sad and unnecessary. We should be able to share our experiences and thoughts freely without fear of being insulted for them. I have observed that in general the responses on his site have been positive and most people are warm and supportive and ready to learn. If some people are being offensive, lets not take it personally and let a few bad experiences push us off the forum. Please don't go.
What's going on? I can't find the post that generated such an angry response. Good God, folks, can't we accept what we have and use this forum to help one another? I'm not in denial, but a positive attitude goes a long way.
Will someone give me a clue? I have had 2 mildly successful DBS surgeries, programming issues, for 5 years, testing for Lyme, a prestigious neurologist who lost my records (!), just thIs week minor surgery that hurts, a lawsuit I brought against a blatantly discriminating company, and the list goes on. Sure I have cry days, but I've got what I've got, as we all do.
Bailey of Texas, Meta Cognito and Colleen (and Eva),
I so much enjoy reading your posts. You three are very educated and post things that are extremely encouraging and interesting. Eva is another member of this site that is uplifting and encouraging. I implore you all to reconsider your exit. We are all in this together. One big family of PWP. Like any family we have our faults and differences. Like any family we need to accept each others strengths and weaknesses.
I have gained so much courage, inspiration and strength from this site. I felt like i gained friends when i found this site.
Meta is more clinical, Colleen and Bailey are more emotional and Eva is just down right lovely. You all feel like family to me.
Please can we continue to offer each other the support we need. The unconditional understanding of knowing what it feels like to be a PWP.
I will truly grieve the loss of you guys, so PLEASE stay.
Timeandagraham, I felt quite to the contrary -- that her posts are honest, uplifting and often very profound. I would not be happy to see anyone leave feeling bullied.
To clarify everything, I have acted as an admin on the site, in two ways. Firstly I have blocked metacognito from further posting on the grounds of inappropriate language and behaviour.
Abusive or aggressive behaviour is as unacceptable on this forum as it is elsewhere. There is no reason why debate cannot be conducted in a civil manner.
Following his rejoining of the site under an alias (thevillain) this morning and the abuse directed towards me, I have deleted his post and his comments (as thevillain). Masquerading under an alias is strictly forbidden on the site.
We will obviously continue to block any further attempted breaches of the code of conduct by the party concerned.
It is time to draw a line under this and remind ourselves that this forum is intended to be a vehicle for mutual support, encouragement and information. If we remember that we will not go far wrong.
What the heck did he do? Who is CHH and where are the posts involved in this brouhaha? I always liked meta...didn't find him obnoxious, just informative from his point if view. What is this, more political correctness? We don't have enough already that we have to squelch opinion from a PD forum?
He penned a different opinion to one of the member's posts related to the pharmaceutical industry. The member felt MC's comment was an attack on her character and MC replied to correct her in his un sugar-coated fashion. Other members added their assault on MC and a swearing match ensued. Poor behavior all around.
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