I have been married to John who has P.D for over 43 years .In our married life I have always been the chatty one and John the strong silent type.He always has the last word on a subject though!During our recent holiday we were sitting in a Taverna having a meal and another couple came in who had been on the same day trip as us.I exchanged a few words but John was more interested in eating .When they finished their meal they came over and sat in the two spare chairs at our table.There first sentence was:What is the matter with you?Turning to me they said:" We noticed he did not speak until he asked what you wanted to drink." John just replied I have Parkinson's. We were then quizzed on his symptoms while they told us how well they were for a couple in their 70s.They then asked John what the worst aspect of the disease was.He told me later he felt like saying meeting people like you but just said that as he was in the early stages he found embarrassment over the shaking and dribbling quite difficult to handle at times.They then got up to leave and the woman picked up John's hand and kissed it.How can people be so patronising?It was ghastly.
You cbviously missed a great opportunity to enlighten some friendly but ignorant people ECD.
Educating friends, family and even holiday acquaintnces is a major part of our acceptance by the masses into their society.
Most people who know little of PD, THINK OUR BRAINS ARE IMPAIRED TO THE STATE OF SENILITY.
you gave that couple little information to dispel that assumption.
perhaps you might encourage John to take the lead in future meetings with "those sort of folk".
And a whiff of humility might not go amiss either!!!
John is more than capable of speaking up for himself.He regularly stands in front of a 100 plus people and directs operations so to speak.What we objected to was not the asking of questions but the way in which it was done.
maybe, not everyone is as articulate as you and John.
Why did you not interact with this couple?
they may have assumed you were slightly snobbish ECD.
I find it strange when people have a stereotypical idea of PD.
I am a young looking 40 and take enough meds to function 'normally' so no-one would ever imagine I had it.
A work colleague (who I didn't really know very well) was going on about all the running round she was doing for her parents and that her father was recovering from flu. She then said his hands had been shaking and he had spilled his cup of tea so he must have Parkinson's and what kind of inconveniences that was going to bring into her life!
As I have never had a tremor in my hands, I said that shaking hands doesn't necessarily mean PD and that perhaps he was weak following flu. She then told me that EVERYBODY knows that shaking hands means PD and since he was 78 he must have it. I then told her that I had it, to which she replied " Well I don't think you have, who told you that? If you do have it you can't possibly have proper Parkinson's you're too young"
My response was to laugh at her ignorance and I explained that PD can come at any age, that my version was indeed "proper" Parkinson's complete with "proper" PD drugs and I told her about how my symptoms had developed with the hope of enlightening her.
The result? She now talks to me s-l-o-w-l-y and keeps asking if I need help with anything - how can a few words suddenly change the way she treats me? It doesn't particularly annoy me, in fact, I find it amusing!
You can only try Bambina.
Whether they comprehend what you are telling them or not, is down to your description and their intelligence to grasp it.
But, at least you made the attempt.
Some people will believe anything.
I have several large ulcerations caused by Oedeema, and the surgery nurse has been dressing them with rather large plasters, if you can call them that.
they measure 8 x 6 inches (biggest plasters i've ever seen)
I told a couple of guys down my local that they were nicotine patches, and that i needed the really big ones to stop me smoking 80 a day.
they believed every word.
Nice one Jupiter
I am lucky in that my tremor is not a constant (for now anyway!) .. but I have definitely noticed a correlation between tremor and people treating me like an imbecile!! I recently had to attend an opthalmology clinic (just an age-related thing, nothing significant as it turned out!) and while I was waiting to be seen I could feel my right arm thinking it wanted to pretend it was conducting an orchestra!! Sitting on my hand is one way I stop it doing this (for a small arm it has a major ego all its own!).. but after having drops put in my eyes I had to come back to the waiting area for 10mins and it was almost impossible to not tremor. During the first waiting time I had chatted with a couple of others, people wanting to know if they had found the right zone etc, and all was fine. During the second, when my right arm was making itself known as an entity in its own right, I wanted to get a drink of water and asked someone if they would keep an eye on my jacket... they looked at me as if I were drunk/drugged/dirty/unclean and as I spoke with them I realised they just didn't know what to make of me. (Please note I was smelling beautifully of CK1, dressed cleanly and in no way ugly!). The consultant then called me back in to his room and as he did so he said quite loudly "Oh I am sorry, I see the stress of waiting has caused you to tremor... let me take your jacket for you". When I left the examination room, I was fumbling to put my coat on again and one of the disdainful ones actually asked if they could help me! I just said "no, its fine thanks, having a tremor really sucks" and i laughed at myself and as they said "yes, it must" I could tell that they felt embarrassed at their reaction...as i would have done in their place.
It really IS odd... that having a tremor should make others want to deal with you as if you are somehow disgusting?
Made me rethink back to a time before parky when I may have seen people with tremor to examine how I might have reacted. I think my only instinct would have been to be sure the tremoring person was OK and not having some kind of fit or attack.
In the old Forum I talked about wearing a tulip badge to show I had parky and many thought it a self-serving kind of thing but.. if the world were to know that a tulip badge meant parky, then those of us with tremor wearing such a badge might not so often be treated as if we are drunk/drugged/stupid?
I started to tell the story I related above to a friend who has Rheumatoid Arthritis. She said "Don't tell me, I know."She took John's hand in exactly the same way as the women had putting it to her cheek.She says that people regularly behave in the same way towards her.So it looks as if anybody with a chronic illness may be subjected to this behaviour.It may be kind and well meant but she, John and I wish they would not.
people will carry on in the same vane, unless you tell them to stop.
you are condoning their actions by remaining quiet ECD.
Tell them how you feel and they will more than likely stop doing it.
There are an awful lot of people who don't understand that PD does not affect a person's intellect - the media appears to support the stereotypical view that PD is an 'old person's' disease, sitting in a wheelchair, shaking for England! Normally after my 'shock' announcement that I have PD and my explanation that PD can happen to anyone irrespective of age, people go away with a whole new perception of PD and what a person with PD looks like.
However, and unfortunately, this doesn't always facilitate enlightenment.
Some people choose to believe and hang on to the stereotype that they have been brought up with. For example 'if your hands shake this means you have PD' and other such nonsense!
HI BAMBINA ET ALL.I go along with every thing that has been said about educating people. its very hard to shift peoples preconcievd ideas about PD . The most common problem I had at work was explaining Dyskenesia and why I sometimes whirled around like a human windmill you would think it was like having three heads Lifes hard enough love PIXIE
The trouble is that people are reluctant to give up their sterotype view of P.D.If I start to explain I can see them switch off.When I tell them. People who know John are fine as they know what he can do:it is strangers like the people in the taverna.I suppose John does his educating by carrying on with his life:still running,still calling ,still organising events. We hope he will be able to do this for a long time yet.P.D is a visable affliction,other illnesses may be just as life destroying but not as visable.
Some of us are not so hard boiled and outspoken as you appear to be,Jupiter. I would like to be as tough as you, but I fear I never will be.
I don't think it's a matter of being hard-faced, hard-boiled or whatever, it's a matter of standing up for yourself and challenging the view that people have - being able to admit "I have Parkinson's Disease and I do not fit the stereotype!" Which I know isn't alwys easy.
Here's a story that isn't really anything to with patronising behaviour.......
One of my 'friends', believe it or not, has never so much as asked me how I'm feeling until her husband's grandma, who is 93, was diagnosed with good old PD. She then sent me an e-mail asking me what they should expect and what it's like. I was 39 at the time and, although wanting to send her an e-mail that said nothing more than f*** off, I didn't. Instead I took the time to explain that everyone's symptoms are different and would progress in a different way, to which she replied "your e-mail is no help at all" Yep. Thanks for your support is all I can say. I hope she doesn't miss me when she wants to borrow money..............!!!!!
I think a lot of people are afraid of any illness that affects the [I]normal[/I]accepted body movements.I tell people that I have PD and they often go quiet and move away slightly.Several friends have dropped off the radar but they still ring my wife to see how I am doing.I suppose that they remember me as I was and are shocked by how quickly Pd can change you.One of my oldest friends has MS and he reports exactly the same type of behaviour.I personally think ignorant people are just as ignorant towards everyone Fronting them up doesn't change them it only reinforces their behaviour. Recently I was refused a drink in a local pub because I was unsteady on my feet I explained that I had PD but they still refused to serve me.I must admit I did become annoyed and that only increased their perceived right not to serve me.I returned later with my wife and had a frank discussion with the manager and received an apology and a promise that he would train his staff to be more aware of people with movement difficulties (His words not mine)I am not sure that any thing was acheived because I never went back but it made me feel better.
Hi,Had another example of people not understanding about P.D.Yesterday John(PwP) met an ex colleague with whom he had worked for a number of years but who he had not seen since his diagnoses.He stopped and talked to her for a few minutes. No mention made of Parkinson's. He told people intially but now takes it for granted, as we live in a relatively small community, that people know. By coincidence I met her today and stopped to chat to her.She asked me how John was and said she had heard from X that he had Parkinson's.Then she said "He seemed to know who I was" I explained that his brain was fine and then went on to explain something about P.D.She moved the conversation on:either she was embarrassed on wanted to stick to her stereotyped image.John is thinking of having a T shirt done.Not a slightly humorous one as we discussed on the old website but something along the lines of.Yes.I have Parkinson's .No.I do not take sugar.Any other ideas.
P.S.This particular person had to retire early over 15 years ago as a result of the most terrible panic attacks:a dreadful illness from which she is still prone and not fully recovered.When I pointed out sensitively that John's illness was visable but her one was hidden and one that she had to struggle with alone she was quite taken aback.I am just hoping that in trying to make my point that I did not hurt her feelings.
Hi. There are several kinds of attitudes that I have come across with folks that I meet. I try to let evryone new know fairly soon that I have PD & I have generally found that people are genuinely interested in my condition & I try to educate them about it while they are still interested. Most of my friends, especially my fellow golfers are very concerned about me and while perhaps at first glance maybe condescending they are really trying to be helpful which is really really nice & if I ever did need any help they would be first in line to volunteer. Christopher
Hi,Yes I think real friends are genuinely concerned.John's folk crowd are.Again it is people who do not know him as he is now that cause the problem.