This is a very delicate subject which i think we are all vulnerable to with being members of an open forum. I know that Parkinson's disease as changed my personality. A mixture of medication and obvious changes in brain chemistry influenced by the progressive nature of Parkinson's causes us to have mood swings and sometimes behave in a totally unacceptable manner. The trouble is some of us become victims of Impulse control disorder due to side effects of medication and this causes unexplained unacceptable behaviour on the forum and then other forum members become victims of victims. It's a vicious circle.
I'm not saying this behaviour should be excused and it certainly does make it difficult for the moderators when they have to bear this in mind and try and be fair. To some people the forum is their life and helps them get through their day. Once they've posted something they may wait to see what response they get and if it's a negative response they be encouraged to do it again. It's all part of risk taking behaviour which fuels euphoria.
Impulse control disorder creates an inability to stop impulses that may cause harm to themselves or others. Those affected often feel anxiety or tension in considering these behaviours. This anxiety or tension is relieved or diminished once the action is performed. Aggressive outbursts lead to behaviour which is often unprovoked or seem to be out of proportion to the event that precedes them.
This kind of behaviour unfortunately as been demonstrated by many forum members including myself by use of multiple names and unacceptable behaviour.
I've now adjusted my medication and see a psychiatrist to control my behaviour and believe i have learned to control the impulsive behaviour to a level that i can be a positive active member of the forum. Well i'd like to think i am. I appreciate the second chance of trying to prove myself. I know i've upset some forum members and cannot rebuild the damage i've done. I wish i could wind back the clock but i can't and it greatly saddens me to think i may have caused anyone to not be active members of the forum. I apologise to blueeyes and goldi in particular because i know i caused them both great upset and have noticed blueeyes doesn't post these days, i do hope he's ok.
I take my hat off to the moderators who have to deal with such sensitive issues and respect the difficulty they have to maintain an acceptable order within the forum - encouraging positive interaction between forum members.
I welcome other peoples thoughts and comments. Thank you for listening.
Dear Cutiepie, very brave of you to admit you have done something wrong and own up to it, hope you get your meds sorted out, take care, Carol
Some of the bad behaviour seen here can be put down to the anonymity afforded by Internet forums. You can be extremely blunt or rude to someone you know only by a nickname and have never seen the whites of their eyes. And, unlike a verbal conversations, no immediate response is required to our rudeness.
"Anonymous" behaviour here is rather similar to some of the out of character things we all get up to when driving. Second later, thinking, "Did I do that?"
In extreme moments, Forum Rage can be likened to Road Rage. I think many of us have replied to a post, clicked the post button and only seconds later, wished to withdraw or alter the post, but of course can't.
Moderation is a tricky one. Some control is required but often seems petty and intrusive. I think it has improved here in that posts are now marked as deleted rather than vanishing without trace. I still think an explanation should be supplied in each instance. And I extend this to punishment of members by suspending their rights to accessing this forum. A moderator should post a statement, intimating the suspension and supplying a reason. Failure to do so is a snub to this community.
Cutie. I welcome your openness and your public apologies. I hope this repairs some damage caused by your previous, extreme action.
Part of an article in my newspaper yesterday.
‘Apology plays an important part as a first step to forgiveness.
Forgiveness heals in the physical sense but also in the emotional sense
When someone hurts us deeply through a particular act, many emotions are aroused, principally fear and anger. These come from our fight- or- flight primitive brain. Try as they might many cannot let these feelings go. But it is essential that they do. There is a wealth of evidence showing that forgiving is essential for well-being.
Research reveals that while men and women are equally likely to forgive, it often takes women longer.
Grudge holding does you no good. Forgiveness increases mental well-being. ‘
Cutiepie I admire you for admitting your wrongs so publicly. I hope in time people will forgive you, for their peace of mind as well as yours.
Grey as always you write so much sense.
HI Carol, grey, bluebell and All
Thank you for the kind words. While writing my post on here yesterday, there was a lot of thoughts, feelings and emotion whirling through my mind and some tears spilled too. But you're right sometimes words have to be said because holding them in causes so much pain and anxiety. When i was suspended, and quite rightly so, it certainly did upset me and on reading the forum, especially Goldi announcing that she was leaving and other people commenting on my behaviour it was a big wake up call. Yes I cried buckets and toyed with my emotions for weeks. I knew I was bang out of order and had no right to take advantage of the forum, which is meant to promote trust in one another so that we can gain support and understanding of living with Parkinson's.
Grey, you're right it is so easy to sit behind a computer screen and not take into consideration the persons thoughts and emotions. By making a post which took all of two minutes to write you can upset someone's day or world!!! Valid point!!!
Thank you Cutiepie for bringing up this subject.
I feel that we are so "off this planet" with first, our devastating diagnosis, our plunging into information collection, conflicting advice, some people's personal agendas and sadly, but quite often an inappropriate post, misinterpretation of a post and sometimes even wild reactions to that post.
Grey, as you so succinctly put,"You can be extremely blunt or rude to someone you know only by a nickname and have never seen the whites of their eyes."
Our dis - ease must not excuse us, rather to infer that we are craving help and just don't know how to ask for it in our torment. I defy any PwP to claim that they are in their "right mind". It affects us all differently but enormously, from work issues, day to day living even to relationships.
We react in a knee-jerk way to try and regain some "normality" sometimes with ecstatic poetry, sometimes helpful information and sometimes just a kind word.
I have found the forum to be a lifeline to me: I so hope it is to others despite it's "sibling inter-relationships" (have you ever met a family who as no fallouts? And they've got the benefit of generally the same gene pool and like customs!)
However, one aspect grates in this discussion: that is the subject of forgiveness. I am not religious but I believe strongly in justice, compassion, "right" and "wrong".
Can you partially give birth to the wonderful creation of a child? Can you partially love a person? Can you partially resuscitate an injured man? Can you partially forgive someone who has given a heartfelt admission of a wrongdoing with a genuine apology?
May I suggest that is a reflection on one's own generosity and good grace to be able, in all good conscience, to do so.
As one good book says, "Let him without sin cast the first stone".
With kindest regards, Cecily.
Hi Cecily, your words inspired many thoughts. I didn't post yesterday to gain forgiveness, if anything i felt i needed to explain my behaviour so that others felt at ease using the forum and the forum could hopefully have the trust and respect that it needs for us to come here and feel comfortable. Like you say, this forum is the life line to many of us!!!
I've enclosed a few quotes that i'd like to share with you all:-
“ Self-respect is often mistaken for arrogance when in reality it is the opposite. When we can recognize all our good qualities as well as or faults with neutrality, we can start to appreciate ourselves as we would a dear friend and experience the comfortable inner glow of respect. To embrace the journey towards our full potential we need to become our own loving teacher and coach. Spurring ourselves on to become better human beings we develop true regard for ourselves and our life will become sacred. ”
The basic difference between being assertive and being aggressive is how our words and behaviour affect the rights and well being of others. ”
“ Uncontrolled, scattered thoughts are like a speeding car. Unless you brake you'll crash. We need to put on the brakes if our minds are to work naturally. A natural mind is peaceful and a peaceful mind brings clarity. ”
THE LESSONS OF LIFE
If in our lives we have lived with criticism we learn to condemn.
If in our lives we have lived with hostility we learn to fight.
If in our lives we have lived with ridicule we learn to be shy.
If in our lives we have lived to feel shame we learn to feel guilty.
If in our lives we have lived with tolerance we learn to be patient.
If in our lives we have lived with encouragement we learn confidence
If in our lives we have lived with praise we learn to appreciate.
If in our lives we have lived with fairness we learn justice.
If in our lives we have lived with security we learn to have faith.
If in our lives we have lived with approval we learn to like ourselves.
If in our lives we have lived with acceptance and friendship we learn to find love and
non-judgement in the world.
Everything happens for a reason. Nothing happens by chance or by means of good or bad luck. Illness, injury, love, lost moments, true greatness and sheer stupidity. All occur to test the limits of our soul. Without these small tests if they be events illnesses or relationships life would be like a smooth paved straight flat road to nowhere. Safe and comfortable but dull and utterly pointless.
And sometimes things happen to you and at the time they seem horrible painful and unfair but in reflection you realize that without overcoming those obstacles you would never have realized your potential strength will power of heart.
Often times in our lives we come across people who are there to help us in our life journey. Sometimes people come into your life and you know right away that they were meant to be there they serve some sort of purpose teach you a lesson or help figure out who you are or who you want to become. Other times we come across those who want to destroy our path or detour us from it. These people come in all forms, you never know who these people are for they may be your family, close friend or associate, roommate, your neighbor, professor, long lost friend, lover or even a complete stranger who when you lock eyes with them you know that very moment that they will affect your life in some profound way.
The people you meet who affect your life and successes and downfalls you experience they are the ones who create who you are. Even the bad experience can be learned from...those lessons are the hardest and probably the most important ones but sometimes we need to be in touch with our conscience to make us grow as a person, or maybe you have to experience that to pave the way for something much better.
If someone hurts you ,betrays you or breaks your heart...forgive them for they have helped you learn about trust and the importance of being cautious to whom you open your heart. If someone loves you love them back unconditionally not only because they love you but because they are teaching you to love and opening your heart and eyes to things you would have never seen or felt without them. Have a heart of understanding because without understanding there can be no mercy, without mercy there can be no forgiveness. And without forgiveness how do ever expect to grow?"
Problems will always be a part of life, and at times when you’re down, when you’re at your lowest point, talk to God. If you ask sincerely, he will enlighten you, clear your confusion, ease your pain, calm your fears, and heal your heart. It’s not going to provide you an instant solution to your problem, but God works in mysterious ways, and as long as you walk with Him, and just trust and believe, the sooner you’ll get to that place where you’ll see everything clearly, and you’ll finally begin to understand. Everything happens for a reason. You may not understand the reason now, but you will when the time is right. You don’t realize, that no matter how you try to control things your way, if it’s not meant to be, it’s not going to happen. If you refuse to accept it and force it, you’re only prolonging the inevitable. You’ll only delay God’s true plan for you…He has a plan for you if only you learn to be open and let go of the things that he wants you to let go of. So, stop manipulating things. A solution that is manipulated will not bring real happiness. For when you judge another, you do not define them, you define yourself.
Make every day count. Appreciate every moment and take from it everything that you possibly can for you may never be able to experience it again. Talk to people you have never talked to before and actually listen let yourself fall in love break free and set your sights high. Open up yourself and you will see more. All those events you meet in life, be they little or major are there for a reason. Uncover them and they will lead you towards a new journey...Belief is a wish with an action plan. Manpower moves wrenches, horsepower moves cars, and the power of the mind moves the world.
You can make of your life anything you desire. Create your own life and then go out and live it. Change your thoughts and you change your world.
Positive thoughts equal positive results. Begin each day by sowing positive seeds...release all the negativity in your life for it stops you from accomplishing all that life intends for you....
" Your life is a book read by many, understood by few, but lived by none but you."
And most importantly talk to those who matter the most in your life because it's so easy to isolate our thoughts and become trapped by them creating so much anxiety and stress which stops us living our lives creating barriers which once built seem so hard to break down.
Sorry, I'm on one, thought whirling, but much needed! Helps if i express in words. If you're reading this, thanks for taking the time.
What is right and what is wrong? When you make a decision to say or do something which may have an effect on others and you do so honestly and truthfully then I maintain you cannot or should not be faulted if later your decision was wrong.
If you pick your words carefully and take time before hand to assess the situation you are dealing with then there should be no adverse reaction, unless the recipient of your action reacts in a way you cannot have foreseen. This disease that blights us has made each of us unique, reacting to life and our medication in infinite ways that leave us open to ever changing attitudes to life and other people.
Forum rage, so aptly put by grey, can be caused by miss interpretation , unintentional rage, or you just feel in a mood and are spoiling for an argument, intentional rage. Some onlookers reading this will be moving in their seats and adjusting their caps, as they have used their safe anonymous position to let rip and saving themselves a fat lip if they had been eyeball to eyeball..
Do we use this disease as an excuse for malingering or bad manners? This accusation has been mentioned to, and directed at me personally, so I am not making any false or imaginary statements. This is a thought that could be true and responsible for wild words sent flying..
I will close now and reassess my thoughts as my lucid moment has passed and it is meds time, so practice what you preach, and if you can’t say anything with confidence and conviction don’t say it.
I hear your words and respect them but unless you've experienced the agonising mind blowing side effects of the meds causing Impulse control disorder it's very often not the case that you want to be abusive to others but more so that you can't control your actions and this is by no means an excuse for behaving badly - it's more than that, it's beyond your control. Then perhaps your agruement would be, you shouldnt be allowed on the forum and yes you're right, why should other members be weary of using the forum because you've created lack of trust and made people feel vulnerable and weary of who is genuine. The problem is when you're experiencing the affects of ICD most people wouldnt recognize it and would just think you're damn right rude, arrogant and disrespectful to other forum members, which i can quite rightfully understand and appreciate. It wasnt until i was suspended that i realized i had become out of control and needed help desperately, although at the time i was in denial and blamed everything but my own behaviour. I knew what i was doing was wrong but i couldnt stop it. I was totally selfish and new the impact of my actions on other forum members but couldnt stop. You may say that sounds like the mind of a sick evil person, and yes your are right, it's not normal behaviour.
I'm speaking from my heart because i do know there are others who have behaved badly breaking forum rules due to the affects of ICD and my heart goes out to them. I don't want forgiveness, just wanted to explain and make reason of why people behave the way they do and maybe along the way grasp some understanding of peoples behaviour.
I hold my head down in shame and will say no more and close this post with my apology to you all and hope that i can regain your trust and respect while i learn to respect and find myself once more.
I have read your posts again and take on board your comments and would say i have been subject to either an impulse or compulsion as a result of my meds.
When i was on 24 mgs of Ropinirole last year and, in July after i had just got my new car i was returning home alone. I was on a B road about 2 miles from home behind two trucks going down a half mile straight and there speed wouild have made it a pretty close thing if i had overtaken, but something happened and i pulled out and went.
By the time i was past i was doing 100mph going into a bend at the end. My heart was pounding, my hands sweating and i knew that i had just done a stupid thing. I made it home and went to put the car in the garage, and knew it was not lined up as i turned in, but nevertheless i kept going and ripped the side of the car on the door post along half its length.
I had noticed changes in my attitude to driving before these incidents, but failed to take action. It was like something flipping that day, going over the edge perhaps. It was some time before i trusted myself behind the wheel again.
A long winded example, and is not meant to sound like if i can see it happening so can the others who are subject to this problem.
As we are all different in our dealing with Parkinsons, my point is i was lucky in that i was able to spot my problem after these two incidents compared to the examples of others who have made theres known on the forum.
Having said that, i was also subjected to remarks because of my views some time ago on this matter and rather than engage in further combat retired from the forum.
There is no excuse for bad manners and abuse and as the history of this side of the discussion was well documented needs no further mention.
I do sympathise with others who suffer this problem but it seems the degree of severity, if there is such a thing, makes the seriousness difficult to comprehend in individual cases.
I hope i have not offended anyone and kept the lid on the can.
Hi QT & GG,
I believe we should rename this thread "Philosophers' Thinkroom"!
for the most thoughtfull and honest people I recognize.
No-one is "perfect" and as such, I stll believe no-one is "better" than anyone else.
However I do believe we are on a learning path and can strive to be a better person as you both have stated.
I feel honoured to be in your company.
Thank you, Cecily.
May I add a youtube song about the drugs we "use"?
Emily and Co, it's older than you and should be given a little slack for those of us who dared to "moon" in younger days!!http://www.youtube.com/watch?v=pHF-iApfWis
It's by Melanie.
Hi Cecily and G.G
First of all G.G i'm sorry if i upset you in anyway, i was just try to explain the extreme behaviour that ICD can cause and I thank you for sharing your experiences too.
Cecily, as usual your words made me smile and chuckle to myself but i've got to say i don't thank you for the youtube link because all day i'm going to be singing "Look what you've done to my song"
or should it be "Look what you've done to my brain" or "The drugs don't work they just make you worse"
Come to think of it a couple of girls were mooning at the rear window of a mini bus the other day and happy memories sprung to mind, i'll say no more.
Honest thoughtful people add Grey to that list,that post this morning.took courage,It was about his friends.I am proud of you Grey I would be honored to have a friend like you
As humans were reactive by nature understanding and forgiving are essential to moving forward new beginings progress
Morning QT and Cecily,
QT you did not upset me at all, the thought never crossed my mind, no problem there, but the only thing to upset me about my experience was my stupidity at driving into a hazard and the chunk out of my wallet to fix the car.
Cecily your pearls of wisdom are flattery that i am not worthy of but being in your company would be my honour.
goo and drivel my PD and my medication are not to be used as an excuse for my comment, closing ranks back door conspirators shame on you,sid thought he had friends,I dont pretend.Ive said enough ,I wont comment further
I thought i'd use this thread to discuss sid's life ban because it
s about why we behave the way we do.
Sid knows he's got a friend in me. Yes we've had our ups and down but i'd like to think i've been there for him as i know he as for me. I chatted this morning about the life ban and said i feel that i need to say something and asked him if he minded, he said "no, tell them the truth jack, so here goes"
In the last year like myself sid's behaviour at time as been unacceptable and he's upset some people and been suspended but in all fairness they've upset him too at times knowing how he can't help but hold his tongue. I don't know if forum members are aware but Sid's been suffering with the agonising side effects of the DA'S causing ICD (Impulse control disorder). He told part of his story last week on the compulsions thread, please read it it may open your eyes to the mental torture and anguish that Sid's been through. He's stopped taking Mirapexin and i truly believe he's changed, more clear minded and you can now have a decent conversation. The standard joke is Sid's barking mad, and yes his behaviour at time as shown to be a bit extreme but doesnt that demonstrate how these drugs have such a powerful influence and are mind altering drugs. I've chatted many a time on the phone with Sid and we've both cried down the phone (Sid, I think you're more of a man for showing your emotions)because we're so damn sick of these meds toying with our life's and emotions. There's been a few times that Sid said he couldn't continue life like this and he's been absolutely beside himself with despair of what's going to happen next. It feels like a demons got hold of you, possessed you mind. Pure bloody evil!!!! And so is your behaviour........
Part of the problem is too that we can become victims of victims of the da's and this creates a vicious circle of behaviour, fuelling it. We bounce of each other, lies, deceit, denial - fuel it even more.
I believe sid is not a pervert and his behaviour caused by the da's as confused and may of given some people this impression. I truly believe he's a good man. I know he thinks a lot of you foke on here and the forum is his life and main support in coping with Parkinson's disease.
I believe that the life ban should be lifted and Sid allowed to prove himself to us all to be an active supportive role of the forum community. He now presents himself to be in control of his behaviour. He is sorry for past events but would like to start fresh. So what do you say fokes? I say welcome back sid!!!!!
I feel bad for not posting sooner.Sid has been a really good friend to me and still is.He has stood by me when I needed someone to talk to and helped me when coming off mirapexin.Two weeks ago I noticed a big change in sid,he was alot happier,managing to sleep and talking sense lol(sorry sid).Since coming off mirapexin he has been spending more time with his family and his relationship with
them is stronger.It came such a blow to him getting a life ban from the forum,he has many friends on here.The reason for the ban I feel was not directly linked to the forum and he was not given a chance to have his say.The forum is a part of alot of our lives getting advise or just chatting to people in the same boat.I think people shouldnt get life bans,especcially when the forum means so much to
them.I just dont know how I would have coped without all the support from the forum when I was having hard time with das,I know I was a pain.
Take care Dot xxx