[Radioguy]

Hey all...

For an upcoming podcast, I want to touch on the stupid things well-meaning people say when they learn you have PD. Stuff like, "But you LOOK fine..." and "Oh, I get a twitch in my hand from time to time too!"

Also, I'd like to know how you react when these things happen. Do you say anything? Do you just ignore it?

Also... how do we educate folks without sounding "whiny" about our situations?

Thanks, and give me a listen if you get a minute -- http://parky.billywisdom.com

Bill

[Jaye]

Them: "You look fine. I really mean it. You look terrific!"
Reply A: "Thank you very much. It only takes $12,000 worth of prescription drugs a year to keep me looking this terrific on my good days."
Reply B: "Thank you very much, and thank the drugs, the doctors, and the guy that drove me here. i know you understand because of your lupus/arthritis/gangrene/cancer." Be prepared to listen to their latest story, but the subject is off PD, at least.
Reply C: "Thank you very much. I wish the drugs would work all the time like this. Of course none of it could be A-G-E, ha ha."
Reply D: "Thank you very much. That's so good to hear when I feel so crappy inside." This one is reserved for the gal who is always "checking" to make sure I haven't gone helpless like her relative who has PD-or-was-it-Alzheimer's/MS/Shy-Drager. Either she expects this to happen in a week's time or she enjoys reminding me of it.

Anti-whine attitude for those who want to hover: "No, no [you don't need to carry a chair for me over here to the middle of the hallway], I need the exercise, and besides, the PD slows me down but it doesn't stop me."

Them: "You have PD.? Oh, I take vitamins and eat properly!"
Reply: "Ever since the days when people had to go to a hard-to-find health food store to buy stone-ground whole wheat flour, so have I, honey, so have I."

Them: "That's contagious, isn't it?" Oh, how tempting it was to say yes. Instead I pointed out that if that were so, all the wives and husbands of people with PD would come down with it.

The podcast is terrific. I found it easily by searching iTunes for Parkinson's.

Jaye

[stevem53]

The one I always get is..

How are you feeling?..Not Hi..Whats up?..Always..How are you feeling?

I reply with good days..bad days

Ohhhh..But you look good!

Remember folls.."It is better to look good than to feel good".. ..Was it Billy Crystal who said that?

[paula_w]

In answer to the question: "How do you feel? You look good," Just tell them "I look much better than I feel" and let them decide.

Paula

[Radioguy]

Originally Posted by Jaye

Them: "You look fine. I really mean it. You look terrific!"
Reply A: "Thank you very much. It only takes $12,000 worth of prescription drugs a year to keep me looking this terrific on my good days."
Reply B: "Thank you very much, and thank the drugs, the doctors, and the guy that drove me here. i know you understand because of your lupus/arthritis/gangrene/cancer." Be prepared to listen to their latest story, but the subject is off PD, at least.
Reply C: "Thank you very much. I wish the drugs would work all the time like this. Of course none of it could be A-G-E, ha ha."
Reply D: "Thank you very much. That's so good to hear when I feel so crappy inside." This one is reserved for the gal who is always "checking" to make sure I haven't gone helpless like her relative who has PD-or-was-it-Alzheimer's/MS/Shy-Drager. Either she expects this to happen in a week's time or she enjoys reminding me of it.

Anti-whine attitude for those who want to hover: "No, no [you don't need to carry a chair for me over here to the middle of the hallway], I need the exercise, and besides, the PD slows me down but it doesn't stop me."

Them: "You have PD.? Oh, I take vitamins and eat properly!"
Reply: "Ever since the days when people had to go to a hard-to-find health food store to buy stone-ground whole wheat flour, so have I, honey, so have I."

Them: "That's contagious, isn't it?" Oh, how tempting it was to say yes. Instead I pointed out that if that were so, all the wives and husbands of people with PD would come down with it.

The podcast is terrific. I found it easily by searching iTunes for Parkinson's.

Jaye

Excellent stuff! Especially about it being contagious. Then you should sneeze on them. I'm glad you're enjoying the podcast.

[stevem53]

Originally Posted by paula_w

In answer to the question: "How do you feel? You look good," Just tell them "I look much better than I feel" and let them decide.

Paula

2 points Paula!..I like that!..

[BEMM]

The podcast came on immediately, and I like it very much. Look forward to hearing the next hundreds of them.
To people who tell me I'm looking fine, I say, 'Thank you, I feel great!" On good days it's quite genuine, on not so good days it is obvious to both parties that the whole exchange is a sham.
When I'm in a wicked mood I may say, 'Thank you, I'll get over it yet." And I suspect some of them believe me.
I hate making people embarrassed. I have a life long, involuntary, irresistible need to defuse embarrassing situations, which often makes it difficult for me to explain to people that I have PD.
I'm sorry to admit that when I'm asked if I feel all right, I tend to say, 'It's not as bad as it seems.'
I'm no help at all in spreading information about PD.

birte

[rd42]

Them: "That's contagious, isn't it?"
Me: "Don't make me touch you with my shakey hand!"

Robert

[boann]

Them: God doesn't give us more than we can handle.
Me: Oh.... but what about all the people in the world who commit suicide?

Them: Boann, I eat my scrambled eggs with a spoon, too - it is just easier.
Me: How nice for you!

Them: We all have our crosses to bear.
Me: True, but all crosses were not created equal.

Them: Come on, dyskinesias are sort of *expected.*
Me: You go right ahead and expect them - be my guest.

Them: You have a boyfriend? And he doesn't have Parkinson's? He must be *really* nice!
Me: Oh. My. God.

Boann

[KC Tower]

Why do you seem to care so much what people say????

Lots of stupid comments are made about all sorts of things to all sorts of people.