Goodbye PUK … from Shaken But Not Stirred
I am saddened by yet another Parky forum and must say goodbye … for the sake of my own sanity.
When I was first diagnosed … I spent some time researching Parky (as I am sure you have all done)online ... including forums and peoples stories via various PD Associations.
What I found which deterred me the most were what I would term as defeatist views … like my life is pretty much over now I have PD.
As I have never taken adversity lying down … I wanted to fight and associate with likeminded positive people.
I thought PUK may be the forum for that … and I started the thread about what is positive about Parky. Quite a few people posted very positive aspects and even where negatives were the daily grind … most still had a positive spin … even if that is that they can give advice and share with other PD people via this forum.
Then the inevitable happened … people who have fought hard for their right to share negatives as they have carried the burden longer than most took offence at my request to use the positive thread for positives only … the rest of the threads gave opportunity for negatives … and some felt so strongly that they even started a new thread titled positives … but focused on their rights to post negatives.
Sorry but I need to find a forum where people still believe they can turn their PD into something positive (the alternative I just don’t want to entertain).
I have had private emails commending me on the thread and stating others feel that those who have carried Parky longer ... at times make the newer diagnosed feel they have yet to earn the right to have a say … maybe that’s why over 2000 views and only 55 posts …
Maybe I can find a group of newly diagnosed where we can have thread topics like …
Has Parky changed your life in a good way
How I challenge Parky daily and win
How to reduce my reliance on medication
Help me find a way to communicate Parky to others
My partner … my carer
Anyway … enough ranting from me … good luck to all and may you eventually find a positive from Parky. Life is 105 what happens to you and 90% what YOU make of what happens.
P.S. I know this thread may cause controversy ... I know certain people will react ... however I do hope those of you who share a common view will use your ability to post and have your say ... rather than just being an observer.
Brilliant piece - hope i don't offend - very much agree with your sentiments though i may be guilty sometimes .dont see myself as +or- , just a free thinking challenger of certain viewpoints .
This would be a shame SBNS,
I'm sure many reading the posts would say that on any one day, we could go through a plethora of moods , our thoughts and attitudes changing by the minute.
We read things which can puzzle , shock or please us. We can be delighted or infuriated.
And most importantly , another's words can make us think , and even change our minds about something.
The + and the - , can switch places.
If you find more 'Defeatist' views than you'd like , on these pages, look at it another way.
You may have stirred someone out of an apathetic existence with their PD , because by you seeing things positively, you made them look at their situation in a different way.
What a lot of good you could do !
The most positive thing that keeps me going after 11 years living with Parkinson's is..... PEOPLE.
People who accept me and my lifelong friend Parkinsons for who we are. Whatever type personality i may have be it: positive, negative, optimistic or pessimistic.
People who don't just tolerate me and my mood swings and bad days, but instead show real understanding and empathy when i need it the most.
People who encourage me to continue my daily parkinsons battles, despite knowing i cant win the war.
People who whenever i feel like giving up, just pick me up, dust me down and do it in a way that's not judgemental.
People who not only respect me as a human being, but also respect me as someone who's shoes they may have never walked in.
People who by just being always being near by, create an energy for me to feed off and help keep me going.
Who is this person?
ALL OF US.......
I am very sorry SBNS that you feel that you need to leave this forum.
As the previous posters have pointed out, your posts have encouraged people to a) post how they are feeling at this particular moment in time, and b) given them food for thought that there just might be an alternative way to consider their situation
I believe that this is the basis of Cognitive Behavioural Therapy, which I understand is to be of enormous help to those who feel that
life has dealt them some blows which they unable to deal with.
Whatever your decision, I wish you the very best
Please don't leave. I like your posts.
I agree with everything that has already been said, I also think that if you can help just one person to feel differently about their situation then its worthwhile.
Pwp's and their carer's who have had PD for a long time have had to be positive or they would never have coped with all the changes it brings to your life.
I understand your feelings completely, we are all different and can all give something to the forum.
When we have given talks to professionals we felt that if it just made a few people remember the pro's and con's of living with PD then they would make a better person once they were qualified, its that tapping on the door all the time that eventually gets change.
You will be missed, I hope you have a good life and keep well
Is leaving the forum not a bit negative? Please don't leave because some have different views from yourself. Come on, where's that fighting spirit of yours. Have your say just like everyone. Fight for what you believe in.Don't give up-never do that. All the very best. EM
Hi SBNS please don't feel you are are no longer part of the forum. I totaly agree with everthing you have said about having a positive attitude to life.
It makes me sad that you feel unable to carry on because of other members comments. We all have issues some more than others but we should all be free to express out thoughts in a such a way as not to offend others. I find i skip in and out of the forum, sometimes i do feel excluded (but that could be because of my lack of esteem) i also realise lots of members have known each other for a long time and have more in common, thats fine but you must feel free to express your thought on the forum (thats the whole point of joining in the first place be it neg/pos)!
No one wants to see you leave the forum. Now who is been negative !
The idea of a forum is for people to help others, give good advice, learn and debate issues and share your concerns or problems and hopefully learn from others.
We may not always agree with each other but hey.. that is life.
I would be very sorry to see you leave the forum. Be positive and stay . What ever you decide to do SBNS we are here because of one thing Parkinson's. I truly wish you well and happiness and hope you change your mind. All the best PB
I have read your posts and enjoy them. I would be sorry to see you leave, but if that is the path you feel you need to take then that is a shame
I wish you all the best for the future with your PD journey and your life with your new wife.
don't expectorate the baby pacifer!
this is a good forum - the only way you'll get one that fits perfectly is to make your own. but nobody 'owns' a thread or can censor responses.
you have added a lot of energy to the forum that will be missed.
but you may find you miss us too.
you will be welcomed back at any time
Thanks Posh Bird I could use stronger stuff but theirs no point.
You know "that which is full cannot be added to!"
No one wants to see you leave the forum Shaky but if you have to!
who cares wins !
We need 4 forums - one for the wrong nast
ople - one for right but still nasty lot - one for the right nice folk and one for the nice wrong folk .but no one would nknow wich one to be in
according to my neuro book there are 7 types of person
poohs, tiggers, eyeores, piglets, kangas, owls and rabbits.
sbns is definitely mostly tigger
i am poohish with a large dose of owl
titan was very eyeore but has found his inner piglet
lin is a kanga
eck might be an enigma. (i had a teacher call me that to my mother. i think she misheard)
but we can all share our adventure in the 100 acre parkilands
in other words we are all stuffed together.
turnip - I love you - you are absolutely bursting with poohishness! I am so brimful of laughter that I could burst.
Kanga sounds too steady and sensible for me - please let me be tigger with a tiny bit of eeyore - who is my most favourite character in the world (after you)!!
Sorry - yes, today I am full of optimism. I have been part of this forum for a long time and taken my share of abuse. Left a time or two, but returned.
Tomorrow, may be totally different but as long as I remember the laughter generated by mornings like this one, there is always hope. Thanks to turnip, a.a. milne and poetry.
I really like your thinking.
It may be very simplistic, but on the other hand simple is the opposite of complicated, so it gets my vote every time.
I do have one question though, is reincarnation a possibility whilst living in this parkilands?
Because I'm sure i was once a busy naughty rabbit (when taking cabergoline). A bit like the white rabbit from Alice in Wonderland, but on ecstasy and speed. However now things are back to normal in my life (whatever normal is), i feel and behave more like an owl.
Is it possible in the parkilands you describe, for a slightly mad white rabbit (on speed) to turn into a tweet tweet little owl?
Or are we looking at the beginning's of a new animal species?
called......The Rabowl. ::biggrin::]
I'm afraid Owl is a pompous know-it-all rather than sweet. I think you may have a bit of Christopher Robin now-a-days, looking after the silly animals a bit but I can't picture you in shorts and a page-boy haircut... or at least I hope I can't!
Hi Shaken But Not Stirred,
I will not try and repeat the comments and good will which have been sent to you from members of this forum.All I will say is this.As the thread title and your name imply.You have certainly done that.It is no mean feat to shake life into a forum and offer a positive wake up which results in debate.Well done,I hope you realise the good you have done.
Please keep posting
All the best