We come from many different countries with varying degrees of education, widely divergent ideas about doctors and pharmaceuticals, different philosophical approaches regarding our fate as PwP and/or caregivers, but we do have some things in common.
1. None of us wanted to be part of this group.
2. Many of us believe that our symptoms are exacerbated by stress and anxiety.
3. All of us (I think) have similar goals: To learn about ways to have more productive and enjoyable lives despite our diagnosis and to learn about better ways to reduce our symptoms and/or to possibly slow or some day stop the progression of PD.
4. All of us (I hope) prefer to be addressed with kindness, patience, and respect.
Maybe it has always been this way and I am just getting softer as I age and deal with this disease, but I sense an uptick in snide, condescending, and just plain rude bickering among us.
As the New Year begins, my simple request of each of you is to be nice. None of us has all the answers or there would be no need for this forum. Let's cut each other some slack. Let's support and encourage each other and not pounce on every perceived misstatement or mistake. There's a way to disagree without being disagreeable. Having PD is bad enough. This should not be a place for sufferers and their caregivers to be mocked and ridiculed.
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jimcaster
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Thanks Jim, You are so right. Unfortunately, that is one of the reasons I don’t post as much. I try to always be kind and expect some kindness from others. Karen
Well stated Jim - " Let's cut each other some slack". Especially as the disease progresses some of our faculties may not be as sharp as they used to be and also there are people born with dyslexia - one of my family members can't spell the word "hundred" but can easily calculate a parabolic curvature because his brain is wired only for numbers and he has hard time writing basic messages, although now days the spell checker helps to a degree. Thank you for bringing this up - "Let's support and encourage each other and not pounce on every perceived misstatement or mistake".
Nonsense. Words cannot hurt other people. They are just words. Anybody telling you different is using that uninformed fact to aggress upon you, and morally you were obliged to resist it, not to give in.
So why did you complain to the mods. about my reply to you yesterday? The fact you did this proves you're either a liar or a hypocrite, but probably both.
Because of the passive aggressive, and psychologically some would say regressed, tendency of people to be intolerant of others while being oversensitive toward themselves. It's a form of regression. Don't be bullied by it, don't be influenced by it, stick with yourself and we need to hear from you.
no jim, you're wrong, and 8n all honesty I could not disagree more, and I have been a Ph.D. psychologist and psychotherapist for over 40 years. You are Well-meaning but wrong. Quite wrong. Personally I don't think telling other people what they can say and not is appropriate, and it is definitely undemocratic and counterproductive. We are either grown-ups or we are not. I was raised in the 1950s and 60s with the idea that words cannot hurt us, and later on, in psychology and psychiatry school, I was taught that intolerance of others personal opinions is a form of mental illness, i.e. arrested development or acquired excess narcissism, what we were taught is the equivalent of passive aggressive.
I hold with those beliefs in all sincerity and professional experience in my expert capacity. It is not true that if somebody says something you don't like, it means that you are so fragile as to crack up; and you can distort your own reaction into a form of your own aggression. That's wrong. People deserve to be able to say what they feel without You opposing them and crushing them because you are somehow faux- fragile, and to lie yourself this indulgence is actually a form of aggression upon others and intolerance with a cement foot. Let people say what they want, you obviously allow yourself such indulgence. Words cannot hurt you, but you're overreaction can hurt others. Believing that you are justified and aggressing upon others because you are hypersensitive, is not true, it is misplaced self-involvement. Understandable but still misplaced. Everybody has problems. It is not for us to impose upon others how to respond. Allow people their opinions and honest reactions. It will not hurt you despite what you may think or have been conditioned to believe. Your right to dictate what another says stops at the other person's nose. So sad, but their own life and difficulties have equivalent meaning and value to yours. You have no right to coerce others when you would not coerce yourself. And if this website goes along with you, then it is inappropriate policy and counterproductive to what it claims is it stated purpose. You can take it. Don't kill a kidder with your feigned weakness, it's really a cover for your own passive anger. Let it go. Everybody has the right to their opinion and to express it, not unlike you. You don't have the right to tell people or to instigate getting other people to bully those who also have their own opinion and would like to be able to express it, just as you award the same to yourself. Instead, be satisfied with your right to express yourself on slate, and to tolerate allowing others to do likewise just as you according to yourself. Anything less is pure self-indulgent hypocrisy and double standard.
Can you believe this, after what she said about me yesterday? An unfounded personal attack and nothing to counter my reasoned factual points. She actually complained to the mods. about the criticism I meted out to her in response, and the post was edited without my consent. It's utterly shocking that this person calls herself an 'expert'. In what? Calling the kettle black? She should be ashamed of herself, but her arrogance, conceit and hypocrisy will see her through.
Yeah, something is pretty clearly not quite right. She/he is happy to complain to moderators when offended but then advocates for an uncensored free for all in threads like these. Must be more going on behind the scenes than we realise.
Oh Jeeves, thank you! You gave me a good laugh on that one.It all seems pretty darn simple to me...have your say in a coherent kind way without trying to obliterate the other person. It's an interesting thing that if you really do have something to say the only way anyone's going to be able to hear it is if you do express it in a kind coherent way. This is a challenge worth meeting and then reward yourself with a cigar...or ice cream.
We're all adults here. All we want is some manners. Simple.
Dr MarionP, I appreciate your professional input, as always, but I tend to disagree that words cannot hurt. Words can indeed be crushing. Not everyone has the psychological fortitude to handle everything that gets thrown at them.
Personally, I like your usual bluntness, Dr MarionP, and, to be sure, you are never rude. Sometimes, though, there are rare occasions where people are rude, and, yes, I suppose there's the first amendment that gives them the right to express whatever brain dribbling comes up. You grew up in the 50s and 60s, I'm sure your momma taught you that if you don't have anything nice to say....blah blah blah. 🍟
'Dr'MarionP is the ultimate hypocrite. Uses the 'call to authority' fallacy to criticise others, while refusing to tolerate any criticism of her cruel, spiteful and ignorant comments.
I think there may be a misunderstanding here. Jim is not positing that we not disagree with each other, just that we be kind. I'm sure we can all find ways to tell our truths in a kind manner (as I think you do).
Marion, you’re very qualified and I’ve learned a lot from you. But I do think Jim was just talking about common courtesy. We all definitely need a tough skin in this life but it would be nice to let it be a little loose and thin on this forum.
Wrong, Jim. Your right to tell other people what to say in their own honesty stops at their nose. It's too bad if you have had problems in your life, but everyone has, and yours are no more important than anyone else's. That's just simple truth. To think and behave otherwise is simple hypocrisy and self-involved indulgence at somebody else's expense, you should vent your anger somewhere else then friendly well-meaning cohorts who are only seeking what you seek,. This is not your place to punish others because of your feelings about yourself, everybody has problems. I thought you were a lawyer and knew how to reason. Maybe you were only the kind of lawyer who knows how to attack, expecting that somebody else will take care of defending themselves against it. If so, your legal education is incomplete, and worse, you already know it.
He never told people what to say, he is asking for them to communicate whatever they want to say with kindness. There is a difference. I could have written this same message to you filled with anger, nasty words, and attacking your ideas, but I didn't because there is no need to. My words are clear and I don't need to add MY emotional baggage to it. Kindness sure helps in a stressful, super sucky situation. As a child of parents that had many unkind words to say...I 100% disagree with the "words cannot hurt us" mindset. If that were true, there would be no need for psychologist/psychotherapist. I do agree with the mindset that we should not allow other people's words to affect us (as it is THEIR issue), however, it is a challenge at times with such cruelty coming out of people's mouths. May God guide all of our mouths and hearts. 💖🙏
You can say what you like. If you tell me I cannot, you're the agressor making it unsafe. Words on a page are just words on a page. Do not project beyond that boundary and everyone is safe. That's being nice.
Well, live up to your comments and stop reporting posts critical of you. According to your comments on this thread, you should support me in this quest!
what you call kindness is crossing a boundary since it's your interpretation of something that is not there to interpret and creating a value judgment about it absent correction by checking if your judgement is real or fake, correct or incorrect. That's not kindness at all, in fact it's the opposite. Not doing that is actual kindness. One thing real gentleman do do is recognize and respect boundaries...including restraining their imagination the same way. You can't smile kindly at someone while failing to curb your dog.
"Words can't hurt you?" Too blanket a statement for me. Ask any child or spouse or ex-spouse of a narcissist. Cruel and hurtful words within a relationship that should be loving and trusting can cause lasting trauma that is difficult to overcome. I agree with Jim...we control the tenor and tone of this site; we can decide to disagree without being nasty. There are complaints from participants all over internet sites set up for exchange complaining of this sea change in tone among participants. We have PD, but are also part of the larger world of pandemic burnout and stress. Let's try not to take our frustration out on one another. Those of you who have decided not to participate, please try again. We need all perspectives.
I like what you said, here, do allow disagreement, without being nasty. Yes. Nailed it . No one is asking for unity except on that very concept. (If they actually are, sorry, I must have missed it )
Unity that is demanded or forced can have the negative characteristics you have named; unity can also come from shared values voluntarily chosen by individuals who happen to agree. Perhaps it would help to point out the behavior that has made some of us uncomfortable. I know I have been troubled by participants who say (clearing paraphrasing), "Well that comment is typical of the rigid, predictable things we have heard from you for years." For me, it is the "you" statements that are beyond observation and spill over into negative judgements and personal attacks. Just seems unnecessary....if you want to write me a nastygram, send an email.
MarionP, it seems ironic that you seem to be dictating that the rest of us agree with you. I couldn't disagree more. Words can hurt and can cut like a knife. Children and wives in an abusive relationship can suffer for years from emotional (words) abuse. It doesn't matter how much education you have, what time period you grew up, you don't have a right to tell Jimcaster that he cannot request kindness from people. Life is hard enough with the dx. If you don't like what someone said, scroll on past instead of trying to bully other people to agree with your "educated" opinion. Your long paragraph is not edifying nor helpful to anyone.
Jim is not setting forth some kind of dictatorial edict - he is making a request. These two things are quite different. He is backing up his request with a fact - that bickering creates stress, and this is quite true. Is also true that stress aggravates illness, any illness. So his request is backed up with good reason.
Thank you Jim spoken like an educated gentleman. This forum is usually a safe place to be supportive of one another and share protocols about the one thing that unites us.
To say words don't hurt is to say that words have no meaning. And if they have no meaning then nothing you have said has any meaning. However, no one said anything about not allowing disagreement. And Jim is only reminding us to be kind when explaining our disagreements. Is that really too much to ask?
By the way I grew up in the 50s and 60s and learned very early that words indeed can hurt. However your method holds some truth, and if our government and media used it to interpret our speech, the truth would not be censored as it is...and America could be free again!
I agree with you Jim. it’s one thing to express your opinion - and another to be rude or aggressive in how you do it. Maybe some people aren’t affected by aggressive or rudeness on print or otherwise. I think the majority are.
Well said Jim. There are ways of how to answer someone, you have to choose the correct one under the particular circumstances. Being rude is a choice and doesn't belong on this forum where people are trying to be supportive of one another!
Thank you for such an eloquent post on kindness. I have said this before on this forum. Having PD is bad enough, no one needs to be unkind. As I struggle in my own life....I am trying to live now by Richard Schwartz's words "Love what is in your way, and it will transform". Wishing us all health and happiness and LOVE.
Thank you. Only one comment from me. I can't believe this conversation is even happening. PwP's have enough stress in their life. I think we need to end this thread before it really gets hurtful. Remember, we are all different. 🥊
A Greek saying: "Tongue is boneless but it can break bones."
I believe most forum members are nice, however, there are a few that they are either newbies and in Phase I of their PD journey--ANGER--OR they don't have PD, they are not even care givers, who try to impose their beliefs/opinions (medical or otherwise). That's where the clash is. . .
A lot of us like alternative therapy added to the pharmaceutical route and a few try to convince that MEDS are the only therapy for PD. I believe that is the ONLY reason for arguing/attacking each other. We have to learn to respect each other and accept what everyone believes. Mocking alternative therapy is rude and causes a lot of arguments.
That attitude is exactly why humanity is in such a mess. Tolerating lies, hypocrisy, etc. because you have nothing nice to say, is to allow lies and hypocrisy to flourish.
Im so glad you use your energy to let me know I use supplements as a placebo and because I won't belittle people I'm a hypocrite....well at least if your focus is on me, your not attacking somebody else! 😉 And by the way, I have plenty to say, I just choose when...
I didn't say you use supplements as a placebo. I challenged your statement because you were making a positive claim about a specific supplement that wasn't supported by your own experience. I didn't call you a hypocrite either. I criticised the pervasive attitude that people should either be nice, or say nothing, no matter how foolish/false/hypocritical/dangerous the claim being made. Criticising people who are wilfully ignorant and who deliberately misrepresent my comments, is also ESSENTIAL
Maybe this SNL skit from 1975 would shed more light on this topic:
Ambassador Training Institute
Husband … Dan Aykroyd
Wife … Laraine Newman
Pitchman … Andrew Duncan
[In a kitchen, a wife serves her husband dinner.]
Husband: [disgruntled] Sandwiches again tonight?
Wife: You know I can’t stretch the food budget any further! Why don’t you get a better job?
[Through the magic of Chroma-Key technology, a pitchman appears – superimposed over this kitchen scene – and addresses the camera.]
Pitchman: Are you stuck in a go-nowhere,do-nothing job? If so, this is your chance to start an exciting career in the world of international diplomacy as an ambassador to a foreign country — by enrolling now at the Ambassador Training Institute.
[After a glimpse of the ATI logo (a shield with an eagle, a dollar bill, and a crossed knife and fork),we dissolve to stock footage of horse-drawn carriages,diplomats shaking hands, tables laden with food,etc.]
Ambassadors live in luxury and get to mingle with glamorous celebrities, royalty, and the social elite.And they don’t have to pick up after themselves.Ambassadors have a lot of prestige and influence. They put in long hours without working hard. And they’re often the center of attention. And the food?Fantastic! Ambassadors dine on the finest gourmet food at big fancy dinner parties in palaces, in embassies and trade centers.
[Back to the pitchman.]
To see if you qualify for a career in diplomacy, take this easy test, right now, in the privacy of your own home. Listen closely. You are having dinner with some foreign dignitaries and someone says something anti-American. You:
(A) Shoot him and create an international incident.
(B) Pretend you did not hear it and ask him to pass the sweet and sour shrimp.
You’d be surprised how many people say “A” — but if you said “B,” then you have the ability to make quick decisions on your feet. When you enroll at Ambassador Training Institute, you’ll learn how to accept gifts graciously, how to propose toasts. You’ll use phrases like: “Delighted to see you again!” “I’ll ask the Secretary of State.” and “Pass the sweet and sour shrimp.”
Now, here’s how to get your free booklet. Just send three hundred thousand dollars and the name of the country to which you’d like to be ambassador to: Illegal Campaign Contributions, Ambassador Training Institute, Mexico City, Mexico.
Thank you Jim for posting this. Feeling calm and cared for is healing. I don't believe anyone feels the same when kind words are directed towards them as when the words are unkind or disrespectful. Disrespect is stressful.
Isn't it funny that we're not even talking politics or anything combustible but simply a shared chronic progressive disease that really sucks!Parts of this read like you had all gotten together to put on a morality play to demonstrate what Jim was talking about.
I've been on this site for quite a while now and the only person that used to get attacked was John Pepper. And even then it was seldom as personal as what I see now.
You will be heard. You don't have to be afraid on that score...if you have something to say...say it. If you're just pissed off, say that too! Use your words and own what is going on with you. We are all pissed off on some level. We are walking demonstrations of how little control we have in life... f**king sucks!!
The one true good thing that comes out of this for me is being part of this tribe. We are all precious. Handle with Care.
Wow!! I agree that political correctness has gone to far and people are so easily offended; however, people in general need to be kinder and allow for differences of opinion. I spoke with a psychologist about PC and she somewhat agrees with Marion in a different way. Many people are offended by rudeness, lack of tact, anger and aggression. In the past most people (I am 60) thought what a jerk, but they did not internalize it and state "I have been disrespected". I experience this with my own 5 children, and told them to grow a bit of a thicker skin because the person who offended them often does not even realize it and they have moved on. Don't give other people that kind of power over your life. NOTE: I am not talking about verbal abuse.
On both sides of many conversations people have already decided their viewpoint and are not open to productive conversation. Perhaps a good lead on a thread would be in to state "in your experience" or if you don't agree with what is being discussed just keep your mouth shut. Unless someone is giving advice that would harm others, if you don't agree with that advice you are free not to take it, but others may benefit.
Errr I'm a bit late to the Party, is there a ham sarnie left? or a cheese roll? Jim, it's been a while, and though I have no qualifications in Psychology, (I preferred the Sciences hehe) I did pass my cycling proficiency test and was awarded a 'Good boy' badge in the baby scouts for kindly escorting an elderly lady across a road without breaking her, so I know of 'good hearts', and you sir have one, simple as! You made a simple request, almost a suggestion, polite as always and born of concern. Remember everyone that we are all on pretty hard-core psychotropic drugs the side, living under great stress.
Now, cake? is there a slice of ... no? oh well, later folks!
It's actually a testament to the patience and perseverance of some of the posters here that they have put such effort into trying to talk Marion out of what was obviously such an extreme overreaction to what Jim actually said (requesting kindness, not mandating it). The kind of patience Marion would never consider showing them in return.
Thank you Jim. I don’t think you’re trying to censor anyone. You’re just trying to ask people to be courteous. There’s nothing wrong with disagreeing. It’s just how you do it.
Jim, Omg, your words of asking for some simple kindness has manifested into its own creature. I know what you were asking and I’m so sorry for the comments that are UNKIND. Take care ❤️ Karen
Gee whiz! Did you ever think that a post requesting kindness could beget so much venom? You know that movie called The Purge, where the fictional society allows one day of absolute lawlessness a year? Well maybe we should have one thread that everyone who needs to vent their unkindness could let it fly. What say you?
I have been observing that people with PD lose their "filter" as the disease progresses. And they say what they think with boundless honesty. Sometimes I think that the same effect of levodopa on disinhibition, which makes us creative people, may play a role in this aspect. I also sometimes feel that we take refuge in the fact that we have a disease to express some opinions. But I have no doubt that words can hurt, especially when the one who expresses them, chooses them carefully to hurt us. Because we are free to choose the words we use but also the ones we do not use, if we care about how the other person will receive them. I once received an email from a person with PD who was very angry with me. She called me a "snake charmer." It took me months to recover from the effect of those words and all the mail that came written in the same tone. She could have told me what she wanted to communicate without hurting me, but she chose to do so and she succeeded. We are adults, we have a disease that influences our decisions, but also influences the consequences of the decisions of others. Let's take care of each other!
I'm kind in the middle between Jim and Marion. During the last years the people in the western countries became very sensitives because of some non-sense promoted by the media which tries to "levelize" us how the Communists or Nazis did. Everyone gets offended by anything so for sure the next generations will feel the Darwinism results.
But you won't see such a thing in Japan, China and South Korea so the Bible is right when tells us who will be in charge in the future.
Jim is right by saying we should communicate in a civilized manner no matter we agree or disagree. Why we can't do it sometimes? Because of what I said in the first paragraph so Marion is right, too.
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Isn't it time for Constipation,like Mr Dangerfield to get some respect? 
Play the hand that you are dealt. Is there a sane way for PD sufferers to make life choices?
