If it looks like a duck… in my case, I resemble the healthy looking duck. I try to pass as a person who’s never had a twitch or a body that aches deeply several times a week. Yes, there is the occasional get out of jail free card, what I call a pain free day but those are all too rare.

Just the other day I was with a longtime friend who asked how I was. I paused. Even with dear friends who are privy to all my shit (yes, even more than you, most loyal of my blogeristas), I hesitate. Is this inquiry a mere social query or something deeper, more heartfelt? Here’s the tricky part. Some days I’m fine with a mere “social norms” sort of exchange. Other times I somehow need you to know that I’m having what I’ve dubbed the “big ache,” in which I feel as if I’ve completed a 30-mile hike and require a box of epsom salts tossed into a tub filled with hot-as-I-can-stand-it water” so I can soak away the pain.

I wondered what other Parkies wanted from their friends and family. Pity? I’ll confess that, besides feeling sorry for myself, I sometimes want other people to feel sorry for me too. And then they will show up at my door bearing croissants or ice cream or, more important, their companionship. (A phone call counts as company.) As is often the case, I found some reflections on the invaluable Facebook Parkinson’s pages. Here’s a sampling of responses to the question “How do you want to be treated as a Person with Parkinson’s:

What I want from people is to be seen as a person. Not looking for pity, just want to be seen as a human being who is still capable of doing things. Parkinson’s is what I have, not who I am. Yes, there are some things that have changed but what hasn’t changed is who I am.

It would be helpful if others would recognize that high sensory environments are a stressor for those with PD, i.e. lots of people talking at once while there’s music playing, a dog barking or a baby crying.

Do things with me on good days, and help me do things or sit with me or leave me alone on not so good days. Appreciate what I do for them, so it balances what they may do for me.

Be patient with me if my behaviors are frustrating or even weird. I may do things slowly, which may be frustrating to you. I may also have become impulsive, resulting in blurting out things inappropriately. Please bear with me and try to be a friend, even when I’m irritating.

Just care enough to find out what state I’m in and meet me there.

I would like people to do something that really helps me, like the neighbor who returns the trashcan to the top of the driveway on trash day, Mostly I pretend I’m fine because I don’t want special treatment.

When I make plans with friends, I don’t have to ask them to pick me up or drive, they automatically do it. I really appreciate them for doing this. It’s hard to ask for help with things you used to do when you were independent.

Perhaps occasionally ask questions about how PD affects me.

Mostly I just want to be treated like I was before I had Parkinson’s -like a human being, with respect and dignity

Because it’s every day, people stop asking. Sometimes I want people to ask how I am.

I want the opposite. I want people to stop asking me how I am and just reat me like everyone else. I don’t want to be defined by this stupid illness.

I think friends think they really want to know how I am, but don’t really understand what that means. So I just say I’m fine.

I’m at the stage now where if someone asks how I am I say “I’m still breathing.”

I always say “Fine and you.” Nobody wants to listen to misery. True friends will read you, and they’ll know.

Most people don’t need or truly want to know. You don’t want to become the person they cross the street to avoid. I usually say something like “I’m still chugging along” or “some days are better than others.” I try not to be any more negative than that, and then ask “How are you?” Most people love to talk about themselves.

As we’ve heard so many times, no two people with Parkinson’s are alike i terms of how their disease presents. Turns out the same applies to how people feel about the impact the illness has on relationships. What and how much to share is an ongoing question.

My best advice is to try and read your friend, and see what they want and need from you. And here’s an even better idea. Ask them!

Do check out my podcast, Parky Conversations, which introduces us to some really interesting Parkies.