Some of these replies are great. Thanks for the ideas!

Some people mean well and some are just plain ignorant and insensitive. You just have to respond accordingly.

Regardless, I'm one of the PWP's that tells everyone and anyone that I have PD and what PD is all about. I take those opportunities to educate, advocate, and make as many people aware as possible. (I know a lot of you don't take this view and I respect that.) I've personally found that a large majority appreciate the information and I personally believe that the more they know, the better off everyone is.

Doctor: I have good news and bad news about your PD diagnosis.

Patient: What's the good news?

Doctor: PD won't kill you.

Patient: And the bad news?

Doctor: PD won't kill you.

Todd
PDTalks.com

Excellent point -- the day I was diagnosed, the doctor said something to me that stuck. And I use it to sign off the podcast.

"Remember, it's not a death sentence -- it's a life sentence."

I'm glad so many of you see the good humor in my responses, as I think humor is the best way to help the other person out of their discomfort and to keep the lines of communication open. (If I can't keep it all humorous, I do keep it matter-of-fact.) I did use Reply A very seriously, though, when I was the subject of Grand Rounds in Psychiatry at Johns Hopkins Medical University a few years back. I'm not sure the Chairman of the Department, who was interviewing me and my husband about my PD, exactly appreciated it, but I turned to the attendees in the big old lecture hall and repeated: "Ten thousand dollars!" (things were cheaper then).

My friend GregW1 refers to the drugs as our "chemical costume," an expression which can help people understand "on" and "off." It was also he who coined the term "clognition" to describe our bradyphrenia, or slow thinking, and our loss of executive function, or the ability to prioritize, routinize, multitask, predict outcomes, and so forth.

People who are interested enough or kind enough to stick around for the clognition story are always saddened by it, but I reassure them that I still have all my intelligence, that I can still think, and that it's NOT Dementia. I tell them that for one thing, doctors have learned, from neuroimaging of my brain and others, that we can form alternate pathways in our brains by determination and practice, regaining some of the lost skills. In the meantime there are workarounds we can use to accomplish tasks, although they may not be efficient enough to, say, keep us doing our jobs well enough to keep them. I say that I can still do a lot of things around the house, like build "assembly required" furniture. I count on the word "still" to carry a big message.

Jaye

i agree with what both of you have said. i cannot (having been dxed now for over 17 years) imagine not telling people about my disease, but i also make sure that it is the appropriate time; i'm sure not going to whine about my problems when my little sister is crying because her husband is dxed with stage four melenoma. the opportunities are there for all of us to reveal as much or as little as you are comfortable with revealing about yourself. i have always been somewhat of a wise guy and sometimes i can come back with zingers, especially in unexpected circumstances but i am trying to make my sarcasm into a gentle ding rather than a full frontal assualt. i have begun to understand that you can keep your personality and also be an influence when you don't allow yourself to go the level of the person who has (usually, unwittingly) insulted you. i'm not saying that this works for everyone, only what works for me.

It's not whining, It's educating.

If you explain your situation, people won't say stupid things instead.

I always say I'm doing fine. The people who like me will be relieved and those who dislike me will be disappointed.

For someone who has just joined this group, I seem to have had a lot to say already...but, I just wanted to comment on the humor that was so evident in your response to this topic!!! Laughter...the best medicine...Jes...I thought your more serious response, i.e., that many times, it is the inability for others to cope, etc. that causes the seemingly ignorant/stupid questions..and your approach with children is an excellent one...and, to Todd...and I think Jaye, too...taking the opportunity to educate others about this really very-little-known-about" disease is something that I try always to do. Thank you for the laughs...I needed them...

Virginia

Todd:
I'm with you. I went from fine to shakey-all-over in one weekend, so my choice was either to go public or drop out of society for several months until things got stablized. Economics dictated the former choice, and I haven't regretted it.

I don't mind when my friends and acquaintences ask me "How are you doing today?" I tell people at business meetings first thing that I have Parkinson's so they can take their mind off of the shaking hand and focus on the meeting. Sometimes they ask questions, which I use as an educational opportunity, sometimes they just say "Oh, okay", and when they say "Oh, that's too bad, I have an uncle who died of it, you must feel terrible" I respond that it really isn't too bad, and that so far it is more of an adventure. Every once in a while someone will say, "Oh, I hadn't even noticed" when I have observed them staring at my hand.

Maybe I've been lucky, but I've never had anyone say anything that I could really take umbrage at.

This disease can be the most illuminating for those who suffer from it in the fact that people have the opportunity to ask questions and have you respond.

I have cancer and it is not showing in my outward appearance and that fact makes it the lonliest disease. No one asks and I have not the opportunity to inform about it unless I bring it up and it then takes on the curse of whinging.

She's asking for pity, no, just a moment of your time in space.

Ignore what you asume is the reason for asking about Parkinson's and be gratefull when you walk away having hurt no ones feelings that this opportunity presented itself to you.

They will in some way be effected and how they react is not your concern. You did your part for advocacy when you responded to whatever they asked.

Your responsibility is to ensure that you leave them wondering about how come they didn't know about Parkinson's in the first place.

Everyone of us and them are distinct individuals and to preconceive a response to what they ask is not being honest to that individual.

Parkinson's hurts and they can have an unseen story of their own to tell, the question is, Will you be responsive to them as you want them to be to you?

Time to reflect on your anticipated answers to people, I hope so..

Thelma:

Wonderfully said!