Why do people always say.......?

[Lestur]

It can't be just me but how many times after you say you have Parkinsons does a variation on this phrase occur? 'My (insert relative of choice) had Parkinsons and died!'

Do those with other illnesses face a similar response?

[l1111irish]

All the time. Its frustrating at times to deal with misguided insensitive responses to people with PD.

[Annie81963]

It amazes me how rude people can be.

Another classic is "You dont look like you have PD,you dont shake like Michael J. Fox does!"

[wifeofparky]

My favorite is, "i"m sorry". Why are they sorry? They don't even know my husband.

[driller]

DITO, to all, also I get you will be fine your a fighter., Would help if I new whay I was fighting.

ERIC

[shetawk]

Probably all people with serious conditions get the same reply.

Others don't know what to say and blurt out the first thing that comes to mind.

Think of the good intention.

Obits often say people die from PD.

I usually get, "But you look so good."

It's easier for me to say, "I have neurological condition," not giving a name to and owning the reason for my drunk walk.

[Jupeter]

Never had that response but I have heard "Oh, I am sorry" several times. Just ignore it and get on with your life

[alllowercase in reply to Jupeter]

My response is simple;

I feel I have hit lucky. There are 3 conditions with similar causes - Altzheimers, MS and Parkinsons. With Altzheimers, the first 2 or 3 years let you sit around with others and see what is going to happen to you. After that, you are away with the fairies and it doesn't matter any more. And this one kills. With MS, you get to sit in a wheelchair and watch your body slowly drop to pieces until it finally also kills. But, with Parkinsons, the Doctors have a lot of success in slowing it down, and controlling the problems it causes. PD is said too not kill.

So, as I said, I reckon I have hit lucky.

Adrian

[AAM2011 in reply to alllowercase]

yes....ALS (Lou Gehrig's Disease) is the same but, it is sad because there is no cure and you just watch the person you love disappear...then combine that with dimentia...it is a double whammy...Sad.

[bawford in reply to alllowercase]

Such a great attitude and sense of humor you have. You will be here a long time yet. Bless you.

[Hidden]

I rarely tell anyone, but if I do I just tell them and leave it at that

I did tell a friend once who said ''My brother died of that.''

Silly answer really, as I just said ''Well, we all have to die of something''.

It somehow lightened the conversation and never been mentioned since.

[AAM2011 in reply to Hidden]

I will have to remember that response....

[jobby]

For those insensitive people, not only do i have P D . I also have Turrets now F### off. Only joking.

[Annie81963 in reply to jobby]

Hahaha!

[GrammyC in reply to jobby]

I laughed out loud! Gotta keep a sense of humor!

[tlongmire in reply to jobby]

LMAO (if only) Good for you.

[bawford in reply to jobby]

that was good...........

[larry33b]

When once asked, "Is it fatal?" I replied, "Well if you live long enough somthing will kill you."

[PatV]

I tell everybody and get varying results depending on how on or off I am at that moment. I hate getting health advice and try not to get mad. Folks who have had relatives with PD are usually more knowledgable but not always encouraging. To people who say "take your time" I bite my tongue "Do I have any choice?" To people who ask can I help? Yes, hold that door open so I can wheel the walker through, you idiot!! I just smile, and say THANK YOU SO MUCH

[kkamegranny]

I was working reetail and have voice tremors. A customer thought I had a bad cold and commented that maybe I shouldn't be working with a bad cold. Explained to her that I had Parkinson's and this is how I always talk. She told me, well at least it's not a cold! Thought to myself that I'd rather have a cold than Parkinson's. People are so insensitive!

[mitchdee]

everyone knows i have pd im very open about it, im very mild early onset and all i have is shakey left hand and an addiction to crafts, at work we all make joke about it and how after a heavy weekend the whole office is shaking with sympathy with me i joke i can take a pill but the alcohol will kill them b4 the pd gets me.

the young people at work ask me to make things for them, so i do,I have found most people are genuine and care for what is happening to me, but there are few people out there who just cant help themseves and pass some stupid comment. I ignore their ignorance. until i was dx i didnt know much about pd either.

we need to bring attention to our condition, i have told friends and familly to visit this site and see what amazing people i have met and who have helped me more than any doc,,,,

[deder in reply to mitchdee]

Dito all of the above XX

[racerCP in reply to mitchdee]

I have started telling people because of what you say, it can't be a silent disease and the effort towards cure or slowing progression has to go on. One million people in US have PD and at least 5 million worldwide. As longevity increases it will be more prevalent. I feel by telling people it's a political move. What I get from people is, "I'm sorry," a big hug and then a look away and onward. It doesn't change anything. I had to tell my Yoga teacher because of the long stand we did and my hand started shaking but he hasn't treated me any differently than before.

[mathsman]

I teach in a secondary school. A couple of years ago I decided to tell the pupils about my Pd. the tremor was becoming too obvious.

Anticipating the situation that some of them might have relatives who also had Pd and the possibility of one of them saying "my (insert relative of choice) died of that" thus creating the wrong impression I was going to die, (I'm not implying I'm immortal, I meant die soon), I decided to keep it light.

I told them about silly things like how rubbish I was at the balance games on the Wii.

At the end I asked if there were any questions. One hand went up.

"have you got any videos of you playing on the Wii we can see?"

I treasure that moment!

[Lestur]

I have to say a thanks to all the till girls who ask, 'Do you want bags?' but when I say I have PD and will need a hand to pack always help no matter the queue or apparent look of being a healthy bloke!

[Sandra65]

My ex was being insensitive one day about my p.d. I said to him ive got medical evidence that my brain isnt working properly! whats you"re excuse?. Idiot!!! lol

[jillannf6]

hi

thta tsi a good answer sandra

what si ur excuse i mean?

lol Jill