how do you cope when you go out within public,i have found people talk to my carer than me as if i carnt aswer for my self,i have to try hard to join in with the convo and try to keep up
Worthless? Never!
when I had a broken hip and was pushed round in a whelchair for a short time i was determined not to be sidelined. I always got my greeting or comment in first so it was clear that I was part of the conversation. I think that you must not take it personally. Most people are terrified of looking foolish or making mistakes and they get embarassed if they talk to someone in a wheelchair who is not capable of a response... much safer to talk to the carer.
First sort out in advance a plan to get your carer to bring you firmly into the conversation as soon as possible, using your name and inviting you to say something, during his/her initial reply. such as "Horrible weather" "I don't like this rain either but you used to catch your best fish in this weather didn't you Jim?" Jim might then say to the stranger "Yes I remember that whale I caught at Yarmouth the day we had 3 inches of rain It sounds as if that is not your idea of enjoying yourself?" This has not only brought you into the conversation but has invited the stranger to reply to YOU. If you find a formula that works, keep using it rather than trying to think up a fresh one on the spot.
And second , in spite of being slow or having poor speech or finding it difficult to smile, find some way of taking the initiative. What that is will depend on your personality and your ability.
Third, if you find your self left out of a two sided conversation try something like "Would you mind repeating that last thing you said I missed it because a car went past"
I found when I took up teaching adults that half the new students (Who were coming voluntarily and paying good money to do so) first appeared as one eye round the door with the words "I'm no good at art" The "worthlessness" is a lack in other people, not a reflection of your value.Never underestimate how lacking in confidence many people are or how pleased they will feel when their approach is welcomed.
when I had a broken hip and was pushed round in a whelchair for a short time i was determined not to be sidelined. I always got my greeting or comment in first so it was clear that I was part of the conversation. I think that you must not take it personally. Most people are terrified of looking foolish or making mistakes and they get embarassed if they talk to someone in a wheelchair who is not capable of a response... much safer to talk to the carer.
First sort out in advance a plan to get your carer to bring you firmly into the conversation as soon as possible, using your name and inviting you to say something, during his/her initial reply. such as "Horrible weather" "I don't like this rain either but you used to catch your best fish in this weather didn't you Jim?" Jim might then say to the stranger "Yes I remember that whale I caught at Yarmouth the day we had 3 inches of rain It sounds as if that is not your idea of enjoying yourself?" This has not only brought you into the conversation but has invited the stranger to reply to YOU. If you find a formula that works, keep using it rather than trying to think up a fresh one on the spot.
And second , in spite of being slow or having poor speech or finding it difficult to smile, find some way of taking the initiative. What that is will depend on your personality and your ability.
Third, if you find your self left out of a two sided conversation try something like "Would you mind repeating that last thing you said I missed it because a car went past"
I found when I took up teaching adults that half the new students (Who were coming voluntarily and paying good money to do so) first appeared as one eye round the door with the words "I'm no good at art" The "worthlessness" is a lack in other people, not a reflection of your value.Never underestimate how lacking in confidence many people are or how pleased they will feel when their approach is welcomed.
The good thing about being in a wheelchair or scooter is that you are just the right hight to deliver a swift jab into the offenders sensitive area.
That should grab there attention and it will bring them down to eye level.
Once in court you can claim mitigating circumstances, there isn't a jury in the land who would convict
=XXXXXXXXXXXXO
| | |
Handle | |Boxing Glove / Sock full of snooker balls
Expander
If they are behind a desk you'll need one of these gizmos. You'll find one in the Parkinsons UK shop beside the Eck Poetry Tea Towel.
That should grab there attention and it will bring them down to eye level.
Once in court you can claim mitigating circumstances, there isn't a jury in the land who would convict
=XXXXXXXXXXXXO
| | |
Handle | |Boxing Glove / Sock full of snooker balls
Expander
If they are behind a desk you'll need one of these gizmos. You'll find one in the Parkinsons UK shop beside the Eck Poetry Tea Towel.
Hi Ali j,
It appears we have posted yesterday on a similar topic within an hour of each other.To socially outgoing people before pd,this is probably less of an issue.
The main thrust of what you are saying in your opening post,is the talking past you issue.The talking about you to the carer or relative,as if you can,t communicate yourself."Has she,oh dear,bless her",you want to say something but can,t be bothered making a fuss."So you are off out to the shops,that will be nice".The carer then gives a long answer about how things have been,what you are going to get,what the rest of the day entails."Isen,t that right Ali?"says the carer.Just as you finally think you can speak for yourself."come on Ali,let's go"
You feel ignored and worthless as you trundle your merry way to the shops.At least I can let myself be heard on the forum you say to yourself.You do,because you have space and time and there are people here who understand,or are in the same boat/wheelchair.
I see it starting to happen to me,and to look at me,you woulden,t know I had pd,until watching me for a while.
Rise above it Ali,or just put your hand up,get their attention and say"Excuse me,I am here you know",and you are Ali and no less a person than they are.Correction,more of a person than they are.Because they are ignorant.
Take care
Titan
It appears we have posted yesterday on a similar topic within an hour of each other.To socially outgoing people before pd,this is probably less of an issue.
The main thrust of what you are saying in your opening post,is the talking past you issue.The talking about you to the carer or relative,as if you can,t communicate yourself."Has she,oh dear,bless her",you want to say something but can,t be bothered making a fuss."So you are off out to the shops,that will be nice".The carer then gives a long answer about how things have been,what you are going to get,what the rest of the day entails."Isen,t that right Ali?"says the carer.Just as you finally think you can speak for yourself."come on Ali,let's go"
You feel ignored and worthless as you trundle your merry way to the shops.At least I can let myself be heard on the forum you say to yourself.You do,because you have space and time and there are people here who understand,or are in the same boat/wheelchair.
I see it starting to happen to me,and to look at me,you woulden,t know I had pd,until watching me for a while.
Rise above it Ali,or just put your hand up,get their attention and say"Excuse me,I am here you know",and you are Ali and no less a person than they are.Correction,more of a person than they are.Because they are ignorant.
Take care
Titan
hi yellow bird,i do understnd exactly were your coming from,and i do agree with you,but some times it can still be diffiult for metitan ,agin i see your point of view and you sound more like how it effects me,i have me surport with carer this week tuesday for a hour and thursday for 2 hours,i will try both surgestions from you,i do no i need to speak up,but when people chat so fast my head dunna keep up and i look a fool when im to late with there convo,speaking on the lap so much beter 
but i will try me hardet and give it all i got,i let you no how me care goes this week and thankyou for you advice.and eck ,well you make me smile at all your posts,even giggle
thankyou also
but i will try me hardet and give it all i got,i let you no how me care goes this week and thankyou for you advice.and eck ,well you make me smile at all your posts,even gigglethankyou also
hi all i have a daughter with cerebral palsy in a wheelchair and everyone even the docs ignored her.a woman in the supermarket was staring that much i walked in front of her and she walked straight into me.anyhow she waas 6 year old and being talked over when she said ask me its not my brain thats not working its my legs.
john
john
yep john exactly,people can be so rude,and to do that to a child as well,well it put the child off wonting to be able to speak freely there self and feel confident about them self.as she said nothing rong with me brain it me legs,so wot eh,it gets me back up it does
Hi Alji,
As you know I also use a wheelchair and remember how it was when my husband used to wheel me about the town, it was just as you say you don't exist. Once I got an electric wheelchair there was no stopping me and along with an electric hoist for the car it opened my world, just as well really as my husband had pd by then and over the last seventeen years I have been the sole driver.
I went into M&S a not many years ago with a carer and went up to the till, handed over my clothes and card and the assistant promptly handed it all back to my carer card as well, well you can imagine how I felt! I still find it very difficult to talk in a crowd what with hearing aids and the actual problem of getting near anyone whilst in the wheelchair you can never get close enough and as for sales and Christmas bazaar's forget it.
You always have to do a wreckie if you want to meet friends for a pub lunch etc and my friends are still amazed how difficult it is for people in wheelchairs to get around.
Don't forget to have a rape alarm with you when you go out, put it around your neck or on the scooter somewhere and a whistle is very handy as I was advised by the police to keep one near the phone to stop obscene calls he said blow really hard and that should do it.
You are a very worthy person and help a lot of people on the forum so you must be proud of yourself not only for that but also for coping with this very difficult condition with strength and compassion so puff your chest out and feel tall girl.
best wishes
vivian
As you know I also use a wheelchair and remember how it was when my husband used to wheel me about the town, it was just as you say you don't exist. Once I got an electric wheelchair there was no stopping me and along with an electric hoist for the car it opened my world, just as well really as my husband had pd by then and over the last seventeen years I have been the sole driver.
I went into M&S a not many years ago with a carer and went up to the till, handed over my clothes and card and the assistant promptly handed it all back to my carer card as well, well you can imagine how I felt! I still find it very difficult to talk in a crowd what with hearing aids and the actual problem of getting near anyone whilst in the wheelchair you can never get close enough and as for sales and Christmas bazaar's forget it.
You always have to do a wreckie if you want to meet friends for a pub lunch etc and my friends are still amazed how difficult it is for people in wheelchairs to get around.
Don't forget to have a rape alarm with you when you go out, put it around your neck or on the scooter somewhere and a whistle is very handy as I was advised by the police to keep one near the phone to stop obscene calls he said blow really hard and that should do it.
You are a very worthy person and help a lot of people on the forum so you must be proud of yourself not only for that but also for coping with this very difficult condition with strength and compassion so puff your chest out and feel tall girl.
best wishes
vivian
hi vivian ,thankyou for your post,i do see were you comin from about people in wheelchirs or on a scooter,people can be so rude to you and talk above you,i will try stnd tall vivian as you recoment,evn if im 5 foot tall i will streach me self to the limits to be heard,if i dunna try i never get me confident back will i.chatting on the forum i been told i look confident the way i rabbete along to people,but im not that confident in person,in fact quite shy unless i no you. goin in a pub in a wheel chair i find people open the door for me to enter but when get to bar with someone im not spoke to the person im with is the one standing up,which gets to me quite a bit.but not everyone is rude i have found that people now are actually seeing disabled people and helping,opening doors ,fetching them something off a high shelf,places have disability things for us now to,like ramps in to hotels etc.so there are some good and some not so good out there that need to take alook abit more at them selfs before they begin to down talk a disabled person.head up high,big deep breath in,shoulders out and show erm wot we can do eh?well it looks good on paper anyway ,got to keep telling me self to do it
got to keep telling me self to do it
That's right Alij I find a smiley face makes all the difference and I am very lucky with people in my town they all know me and of course my assistance dog always gets plenty of attention.
Love vivian
Love vivian
big hugs vivian
when im out and about or rather when my meds are working im vry conscious of my tremor so i try and avoid chatting to people i dont know , i dont think of myself as worthless though because if the people cant see you have a problem and are embarrassed 2 be seen talking to you maybe its them thhats worthless ??/
Quite right!!! Magic909
best wishes vivian
best wishes vivian