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"Up Your Nice"

Rubbish name - good campaign.

It is Parkinson’s awareness week (on my radar because my husband’s late father suffered terribly with it and both he and his mother have done a lot of fund raising for it in the past)

News item today was about the effect that people’s ignorant responses to people with neurological issues can affect their confidence, causing them to become (more) depressed to the point of self neglect. Experts were talking about how things like being laughed and pointed at in the street because of unsteady gait and irritation with somebody who has difficulty making themselves understood or even aggression towards someone in front of them in the queue who is not quick enough can cause complete loss of confidence to the point where some Parkinson’s sufferers would rather go without food rather than face going to their local shop.

As the experts pointed out, this doesn’t just apply to Parkinson’s but to other neurological conditions - like MS - that have similar symptoms. The PS has started a campaign called “Up Your Nice” asking people to think before they react in such a way when they are “irritated”

I have to say that my experience with people has - generally - been positive and some simple acts of consideration by people and really appreciated (like the checkout operators at my Sainsburys local and Tesco Metro putting my shopping in my carrier bag for me rather than expecting me to juggle crutches, bag, shopping, cards and money.) Nothing condescending or “holier than thou” in their attitudes just simple good manners and common sense.

However, there have been ocassions when people have been appalling. I have been laughed at in the street because of the way that I was walking and some people are very inconsiderate as they barge down the pavement expecting someone using 2 crutches to walk very slowly to be able to jump out of their way like a gazelle. (Don’t want to start a bunfight here but mothers with buggies - the World does not revolve around you!)

I don’t expect to be wrapped in cotton wool all my life but a little thought and GOOD MANNERS would be nice from all sides.

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I have also seen both sides of this. I’m only visibly disabled during relapses but some people can be terribly impatient and intolerant - in my home town it’s some of the tourists. They make me feel invisible. They walk 5 abreast on the pavement when I’m coming towards them with my walking stick and I have to stop and look at them questioningly before they realise that, short of going into the road, I have nowhere to go! They nearly knock me over in the supermarket when I’m toddling along with a walking stick and then say an offhand sorry afterwards as if that’s okay. Perhaps they think that I’m too young to need a stick but it is bright red so it’s as visible as possible! Whenever I have been on holiday I have always made sure I am very considerate of the locals, perhaps because of my experiences locally.

My first ever relapse affected my speech and I really sympathise with those people with speech defects because it is so frustrating to have people trying to finish your sentences or treating you like an imbecile just because you can’t speak properly. Why do people think that you can’t hear properly when you can’t talk? So many times, someone would speak slowly and loudly to me just because I had speech issues. Aaarrgh. I was so relieved when it cleared up a month later. Now it’s only a problem if I’m really fatigued.

However, on the plus side, there are some lovely people who will pack your shopping, open those darned carrier bags that my fingers just cannot do, make way for me when I’m a bit wobbly (and without being judgemental) etc.

Tracey x

I must say that one of the rare positives of having MS for me, is that I have realised how nice most people are. If I go to shops, I rarely ever return without someone- young, old, male, female, offering me help with scooter or doors, bag packing or just a smile etc. I must live in a nice place, I’m sure people have had their negative thoughts, words etc but I either don’t hear or can’t be bothered to be bothered.

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elmo/tracey

your reply made me smile!

i have had speech issues for nearly 3 years. my 4 kids do finish sentences for me (sometimes what i do want to say and sometimes what they want to hear!)

i find it so tiring to even think about words/speaking so am grateful for their help. in fact its harder when folk wait on my reply!

i smiled cos this is a great example of how we are all different with different expectations

ellie x

Hi, I find that generally people are kind and helpful towards me, when I’m out and about.

But I always say thank you and smile.

It costs nowt does it?

Pollx

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Ellie

Maybe I found it frustrating because it had come as such a shock to wake up and not be able to speak properly. Perhaps if it happened now, I would be glad of a bit of help. Once you’ve lived with this condition for a while it teaches you tolerance and patience :wink:

Or perhaps it’s different if it’s your nearest and dearest helping by finishing your sentences because they know you better and are more likely to guess correctly. I find it quite sweet when elderly married couples finish each other’s sentences because that shows how in tune they are with each other.

Tracey x