Well I got chucked out of a FB PD support group! It makes me laugh! Me??! I'm hardly a typing terrorist! Ok I bang on a bit when the mood takes me but goodness to be removed.
So why you may ask... A good question, one that I posed to them. And todate the official group has not explained I heard via the back door. I indirectly supported someone they didn't like?!!!!
I thought the purpose of support was to support... And yes ok that individual had stepped over the line, but expelling by association. I find it very poor.
We all need as much kindness and care as we can find. I'm glad I find it here, even if my outings are not that frequent.
So my thanks to a group who behave like adults and treat me as a friend.
CHH
25 Replies
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Do you think that maybe it's your contrarian attitude , thinking for yourself that is the problem. I mean look at the example of the magazine, they asked for a bit of Christmas fluff on the word "Hope" , others gave them a nice sugar coated ( EDIT BAD choice of words, Jim :>} ) story but not you, you gave them the following which I think was genius pure genius : If you are marching to a different drummer than every body else in the band don't be surprised if the band plays without you. cureparkinsons.org.uk/Sites...
Best Regards Jim
PS EDIT : and we all know who the different drummer is. its you.
When I was invited to contribute to this wonderful magazine on the topic of hope, it made me smile. Hope is one of those words, when I apply to me “The Patient”, I cannot get along with.
To be precise this is what the Oxford D says about it :
'A feeling of expectation and desire for a particular thing to happen'
And straight away the problem shouts at me.... It's too flimsy, too passive, too emotional. Nothing wrong with that in the context, let's say, of 'hopeless romantic ' but when it's in reference to my life, my future, my wellbeing 'hope' isn't good enough. Not good enough for me. I want strong action, immediate results. Let's be clear, hoping for a cure doesn't fill me with confidence.
Hope doesn't keep me well, hope doesn't inspire me.
So let's park the word and the sentiment and grab to me what makes a difference between coping and a life.
I am a firm believer in taking responsibility for my health and wellbeing. A diagnoses such as Parkinson's disease, by it's nature degenerative, gives us forewarning of how our lives could be with this condition and of future. We are lucky we know our fate, to some degree, others with different chronic conditions may not have the luxury of time to act. I look at it like this I have been given advance warning, things will get tough. So what do I do with this forecast well it's not do nothing. Its not about hope that's reality.
I found the most exciting thing happens when you take control of you. Instead of hurdles you see opportunity, instead of fearing what's ahead and wasting time trying to fix things you can't,you can build purpose, and find direction.
Now if this sounds a bit 'spin' Or day time TV its not meant too, I assure you it's very simple in my book. Nothing happens the way you want by chance. Ok it helps if the 'planets are aligned' and you are in the right place at the right time, but you need to create the environment the opportunity thus increasing the odds of change.n
I've found Facebook groups quick to take offence, it's like Mark Zuckerberg is waiting behind the scenes waiting to be rid of anyone who doesn't share his world view and by extension that also means the official group perhaps. Are you referring to Parkinson's UK? Ooops!
I'm finding your posts to be very entertaining, the FB group is so obviously in the wrong
Perhaps you can take comfort in the knowledge that most of these groups are not run nor endorsed by recognized organizations. Rather, they are simply individuals who decide to administrate a group page.....everyday people with, perhaps, little training in tolerance or open minded thinking
I have to say that ever since I joined this group your posts are always some of my favorites. I think of you as a very patient and lovely lady who is handling this disease very graciously. It sounds like your group is not up to your standards. Just keep being who you are and support those who need it most. You are an inspiration to many.
What is it that you could possibly have done? The only thing I can think of is inciting riots and organising your "Rent-a-Mob" pals to destabilise the facebook dictators. Your not quite revolutionary ideas must be put down with maximum force and vigilant observance (spying) so that the mighty may remain so.
Not for 2000 years has it been said that something as revolutionary as being nice to people being jolly
optimistic and inclusive has been aired in public and found desirable. The friends of the facebook mafia shall not prevail, as great strength may be found in weakness. So the evil that is the facebook mafia shall driven into obscurity.
I am aware that the real events of 2000 ago that I have eluded to carry far more weight than the trivial things mentioned in this post. Things that I mentioned in this post bear very little resemblance to those of 2000 years ago.
I had to admit I had a giggle when I learned that you had been expelled from a facebook site. Of course, I realise that is not funny, but I went into overdrive when I read it. All I can say, is that it is their loss. I, personally, love your posts. You always talk sense and write interesting posts. Please continue your good work on this site. Sue
With all the problems P.D. thrusts upon our lives, the need to vent and to purge are at the top of my list. I have been asked not to return to a Dr. Office and black balled by a hospital for my need to speak the truth. I didn't back down and I don't think you should either!
The lack of tolerance of other's viewpoints and behaviors seems to me to be one of the biggest challenges we face today. You are a breath of fresh air to us all. Keep it real.
I often wonder what is "appropriate"? Do people really believe that we can expect end of life issues to be pleasant. I agree that it is only sensible to prepare ourselves and our loved ones for the inevitable, especially with a chronic progressive disease like PD. Last I heard we all die, except rocks ( this is a quote from a very wise 5 year old.
I was once taken off a Facebook group. There loss as the other posts say. At present also one has been banished from a group who has gone secret for being friends with another person. Bothered I am not. Two people have unlike my Facebook page, behaving like children.
As long as you yourself inside are happy let them get on with it. I have done no wrong like yourself.
As for the first Facebook page they asked if I would join again as no one was posting anything BELIEVE IT OR NOT. Bothered I am not. I am not part of the first Facebook page needless to say.
World Parkinsons Day 11th April 2015
Wear a pd t-shirt on that day where ever you live what ever pd organisation it is for. If you can not wear it give it to some one who can.
I sometimes wonder if it is a deliberate policy to keep us quiet? You know, like the landed gentry keeping the serfs uneducated so they wouldn't realise how badly they were being treated? Are we all too accepting of the situation we are in?
Being docile fits the model well, just "dole out a few pills and keep them quiet". It isn't fatal (merely life destroying) so don't upset the applecart by denying the perception of hope.
I do not have hope. Promises of a cure are a fantasy at present. When diagnosed some 13 years ago I was told it was a good time, a cure was just around the corner, gene therapy was the answer. That was hope, where did it go?
I am a realist, I just want to get on with my life as much as I can. I do not want to belong to a group, I prefer to do my own thinking and learn from others such as those contributing to this particular post. Just because I am 79, have diskynesia, shortness of breath, and sundry other symptoms, doesn't mean I can't enjoy a Brit Floyd Tribute Band concert, or a Big Swing Band playing Count Basie etc. Life is too short to rely on hope - I can't afford to sit around hoping for a cure.
Hope prevents you from taking control of your life, just sitting and waiting for someone else to provide an answer which is a long time coming.
So, good luck to all of you, go ahead and enjoy as much of your lives as you can. It is better than hoping!
I enjoyed Colleens take on hope and it resonates. That isnt to say I cant or dont use the word hope.
If hope is bound up in handing responsibility to another, with expectations that my hope and hence ultimately my wellbeing is in another's hands then i want none of it, but if Hope is an optimistic attitude of mind based on an expectation of positive outcomes .... (Wikipaedia) with its opposites including dejection, hopelessness and despair then i grasp hope, a hope that is my responsibility to enact, a hope that despite everything i will have a full and fulfilling life.
I feel "unburdened by hope" I believe I know what is coming, but since it hasn't arrived, I find that I am too rebellious at the moment to accept a life as outlined with all different talk of vitamins, and exercise, and on and on....nothing has changed the ultimate end of the line for me. Seneca said: 'The Truth is a simple language'......the truth of the illness, the continuing march forward of symptoms, I would like to know how you all cope with this having to deal with loss of the active internal life of thought and feeling, and instead have to deal with the constant need to just physically function.....Scares the hell out of me....
Colleen, I'm glad to see you posting again, although what a lousy experience you had in that group. Kind of shocking, really, for an online group.
Anyway, I just wanted to let you know that you wrote a posting to us entitled "Patient Responsibility" that has really helped me a lot. I printed it out and taped it to my refrigerator, and many times I stop and read either different lines, paragraphs, or the whole thing all over again. It has reminded me how to refocus my thinking in the direction I really want to keep it at times when I might tend to feel a little discouraged. So thank you so much. I think we never know how much we affect other people, and I wanted you to know that you have made a difference for me.
I was thrown out of an Alzheimer's group for suggesting that some of the money that goes for "RESEARCH" for the CURE would be better spent supporting caregivers and their families. That really got them completely crazy...all the nice people were swearing at me etc. Even the moderator went crazy! IF you are at all provocative and don't say the usual formulaic stuff about trusting in Jesus and one day at a time...sometimes that gets a big negative response. See being thrown out as the award for being bright and free thinking,
I've only just found this. It sums up everything that's wrong with the way we're viewed as PwP - if we show any sign of independent intelligent thought and we have to be neutralised and/ or ignored .
I've lost count of the times I've been treated as an idiot by people who are supposedly in a supportive role - just because I want to (and DO!) make my own decisions about how to manage my life and PD. Sure, I'll listen to all advice, read all relevant information and then I'll base my decisions on my assessment of all available evidence. |This does not go down well, especially in medical circles; it makes me laugh that while they are faffing about labelling me as 'awkward' they also comment on how well I am doing for someone who has had PD for over twelve years. There's a connection there somewhere!
Your posts are invigorating and life enhancing and encouraging. Good for you! You're a fantastic role model.
I have yet to find any support here in California, San Diego Area....I went down to the Parkinson's Association and found little help and I went once a week for help - there was a very young internist helping folks to cope with the disease itself. I find that I am experiencing a lot of fear reading these posts....I don't feel as if I am cut out to devote hour after hour to PD: exercise, reading up on the newest 'cure'....I don't want to appear to be negative, but I want a life more meaningful-reading Tolstoy, Russell, Frankl, playing the wonderful piano I have. I am retired as of 2 years ago, and cannot even think of how difficult my life was-stress, dealing with A/R in the high millions; on and on.....my day started at 3 am and ended at 3 pm; I performed classically on the piano, I taught, I coached singers....I don't want to return to that life, but I really am not at the point of acceptance of wanting to devote every hour of the day to this disease. Perhaps I am not debilitated enough....I don't know....but it depresses me to feel that I too am going to lose even more than I have....How does one develop a coping mechanism for the loses....am I on the wrong site? I don't want to lose the essence of who I feel I still am.....Help...
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