We've all met them. The strangers on holiday, the man in the queue behind you, the checkout assistant, the lady at the pedestrian crossing. All intent on providing useless advice and well-intentioned but ignorant assistance as soon as they realise "you've got something wrong with you". This always leads to further embarrassment all round, and probably the forming of a big group of onlookers, all muttering amongst themselves.
This is the place to suggest some questions, advice or comments (real or imaginary) which Joe Public might blurt out, and then some suggestions of your own as to possible responses you'd like to fire back to put them in their place.
For simplicity we'll call the participants Joe Public (JP), Relative or friend (RF), PD Sufferer (PD) and Carer (CA). Right, let's go!
JP to CA: "Does he understand where he is?"
PD to JP: "Yes, but he often gets lost."
JP to PD: "Can I help you cross the road?"
PD to JP: "Yes, give me your number, I'll call you next time I want to."
And so on. Off you go!
Well what pi**es me right off is this .........on a really bad day when going for hospital appointment my hubby helps me from car we start walking real slow and JB comes over to us and says, "would you like any help with your MOTHER?"
or.....arn't you the good son looking out for you Mother
I know there are days my pallor is very grey and pain is etched on my face I may look old but to have someone ask if I am my hubby's MOTHER really hurts.
Wow , i can tell this ones got some yardage in it ray ! Payback time ! But it is allways best to get retaliation in first - pre-empt the question - if someone approaches ask them "how are you - ya know within yourself" (please note pr dpt.- would never actually do this) But this post will bring my venom out
Another thing...............I useally get on a good day, "My your looking well today, you must be better." This would be a day when I have done the hair and painted me face.....A good friend that was with me said as quick as you like.
There's nothing wrong with her face, it's her liver that's Fecked.
Well the look on their faces just had my friend and I doubled in two laughing.
She told me I should get me self a few choice words ready for when it happened again.
You know something she was right.
I have rarely had a comment that has caused me concern. I have had a few comments borne of ignorance of the condition, but never had anything malicious. PD is a complicated disease and has a variety of subtle symptoms. We forget that most people have no reason to know anything about PD.
If you tell them about PD carefully and without grumpiness they will invariably understand and be sympathetic.
Maybe it is important to consider your part of this subject!
Has anyone experienced the "does he take sugar" syndrome? Communicating with me through my wife rather than asking me. Perhaps I should carry a placard that says "I can hear and understand you perfectly well and am quite capable of speaking."
I suppose they just don't think.
Spam - i think you have a good point there also - depends upon ourselves a great deal -
This actually happened to me last week, my o/h took me to visit an 82 year old aunt we hadn`t seen for a few months.
Looking at my husband she said, "Oh, you are looking well", then turning to me she remarked "and you are looking" - long pause- "ok too!"
How do you answer that? we actually laughed at the look on her face when she realised what she`d said.
I know the hubby/mother syndrome well, from the other angle. My OH is a fashionable, young-looking lass of 47, whereas I'm a well worn 61-year-old. We are ALWAYS being taken as a caring daughter with her ailing father.
Sometimes guys have been so certain of this that - assuming I'm not really "with it" - they've started to chat her up!
It's amazing how powerful those Parkinsonian kicks and twitches can get on a bad day, particularly in the vicinity of unwanted strangers' shins!
Many years ago I was in the queue at the local PO. I had a "wobbly" A member of JP waited outside for me, explaining that she did not want to embarrass me. She gave me a lift home, made me a cup of tea and 'phoned later to see how I was. I prefer to remember that occassion to the one when a small boy called me a freak
My standard reply to any form of question is one word - "Wednesday".
They usually go away.
Yosser Hughes (from Boys from the Blackstuff) would have sorted them out with a perfectly placed head-butt.
Of course, I would never condone such a thing … but it gives me pleasure to think of it!
I usually say half past seven Rhino lol
What really annoys me and it happens quite alot is.....
When I get out of the car when I use a disable bay I bet she's using someone else's blue badge and one time it happened when hubby was with me in Asda's car park recently and he went mad...
I had just parked up in a disable bay when this woman in a Range Rover stopped right behind me opened her window and said you cant park there as its for either disabled people or mothers and babies ...well that was a red rag to a bull for hubby.
Dinger...I hope your husband gave her hell....
I also have a blue badge, in the days I was able to drive by myself I also got the cutting comments from JP It is very hurtful.
I don't drive much anymore but if and when I do, I have made my mind up to say.
No I can't write what I was going to say, but I sure will say it to the next horrible person who verbially attacks me.
I'd have thought you'd use a more subtle approach Radz. A baseball bat, maybe.
"Tell you what, smart orse, you have my Parkinson's and I'll have your big gob."
Ray stop encouraging belligerence! Treat your tormentors with good grace, they will soon give up.
Hi Ray - just chill ....and use the opportunity to educate others to how it is....when a young man wanted to start an altercation because I pointed out that he had "forgotten to display his Badge", I asked him if he had a Granny ...he said "Yes" and I took him through a scenario in which his granny was unable walk far but could not find a space near the door because of misuse of the scheme etc.....in a perfectly reasonable manner he agreed he was wrong and moved his car.
If it is for instance, a restaurant car park, go inside and give the impression that you need to know whose car is...xyz registration....they will assume that you have bumped their car and rush outside , at which point you can calmy point out their oversight.
In the two years or so when i had an obvious severe limp, I never had one inappropriate comment from anyone. But when meds kicked in, my movements became normal but in the beginning I had to concentrate really, really hard to make my legs move and re-learn how to walk - this meant stopping every few steps, and only looking at my feet. Within a week I had two stupid comments from people ('you countin' the paving stones, love?' and 'they're coming to get you!'). Funny thing was, I was concentrating so hard that I only realised afterwards what had been said. But it seemed that as soon as people couldn't SEE what the problem was, they became unsympathetic and felt it acceptable to comment on it. An interesting take on some people's approach to disability.
On a positive and non-patronising note - I recently bought a Big Issue and the vendor asked if was ok as my hand was shaking badly that day - i said yes and that it was to do with the nerves in the hand - he said 'oh is it parkinsons as my gran had it' - we had a very sensible conversation about it and he was surprised that someone in their 30s could have it (though bless him cos he initally thought i was younger :-) ) - he had the approach you wish everyone had toward disability, empathic, interested, but not in the least bit patronising.