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Hi.

Before my diagnosis I once arrived late for a management training course, and thus missed the intro. They were just splitting up into 5 groups of 6 around circular tables, so I was quickly given an agenda and slotted into the one remaining gap.

What I DIDN'T know, but everyone else did, was that the guy sitting immediately to my right suffered from Tourette's.

Everyone started talking about the project, but then from my right came an unbelievably disgusting stream of vitriol, much of it aimed directly at specific individuals in the room. F*** this, you bunch of C***s, look at that W*****, this is a pile of S*** and so on.

After about 15 seconds the guy became perfectly normal again, and carried on talking about the task in hand as though nothing had happened. Not a single person (apart from me) batted an eyelid.

My mouth had dropped open and I nearly choked as I tried to look casually at him, and everyone else. I was totally stunned. Then everybody burst into laughter, AT ME! I'd been set up!

The Tourette's was genuine enough, but everyone knew that I was the only one there who didn't know about this poor chap. It served me right, apparently, for being late.

But the important thing is that the guy was made to feel welcome and quite comfortable, even though he carried on throughout the day involuntarily spewing out filth. He was accepted as a very competent individual and an asset to the organisation, despite his "problem".

Back to the PD present. When I'm at the shops or in the library perhaps, I may occasionally have an unexpected leg or arm jerk, or my head might drop to one side. The reactions I get from strangers is often ridiculously over-the-top: they veer away as though I had leprosy, or look at each other as though I'd escaped from the asylum.

How do we change such ignorance? God knows what these people would do if they encountered the Tourette's man!

Merve.

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Yes I have even thought of getting a nice little badge with Parkinson's or something on it. People care but would preffer not to say anything. I think i would feel more at ease and i think they would to.

Sorry, but I had to laugh to when you mentioned that every one else new of the Torrettes sufferer but you. I don't mean that in an offensive or insulting way.

It's that type of sinario that makes me what I am today. Before I was diagnosed, or even suspected I had PD, I knew nothing about the condition, other than it's name and had associated it with the elderly.

It was when I was 'forced' to learn about PD that I realised how wrong and ignorant I had been. It's because of that, that I've got myself more involved with the PDS, trying to put my face more in the public eye, help raise funds & awareness in hope of a cause being found and the ultimate cure.

Best way to deal with the public, if someone looks at you funny or makes an inapropriate remark, just turn round and ask them if THEY are feeling ok, or just explain in the first place you have PD. If they want to know more about it they'll ask or if they don't, ask them if they know what PD is. If they don't, tell them.

Don't be affraid to talk about it, even to a stranger. If you don't, you may be making yourself a victim

rubbish

I think the badge is a good idea

Hi all,
other day went into boots to check that i should have this product with pd meds i take,phamerist was serving ,great i,ll ask when it my turn ,told her the names and off she checked ,came back but by then a big q had formed ,then without warning in a raised voice asked me if the meds where for parkinsons ,everybody in the q heard.
i was stunned to say the least,under my breath my reply would of been, so i have got pd and yes i may be young and and!!! ,but i went out of the store saying nothing,may be i should of educated the phamerist and the other customers that pd can happen to anyone at any age and that their thinking of pd is not what you get in the future its now ,the reality is today !!

Hi, about the badges, I have a badge, it says Parkinson's uk on it, no prizes for guessing where it came from.

The queue thing, I've had people glare at me for holding everyone up whilst I'm fumbling around I just glare back but then I'm built like a brick s$%?£ouse sos it don't bother me, I find women are worst tapping or tutting. I guess you have to find your own ways to deal with this problem BUT don't back down shout and scream if you have to and DON'T be ashamed of who you are.

Thanks polly for telling me how to make paragraphs it's cool.

sees you.

I have a friend who suffers from tourette's. He laughs at my incessant shaking, I laugh at his swearing which is in no way meant to offend. And we just have to put up with the neighbour's reactions

What a great double act you two would make!

whadja mean would? we do