Society and caregiving


Oh, just for awareness. I think the more we talk about our lives, the more it can enlighten others: “Okay, I’m not so alone.” I’ve heard that from our Parkinson people that come to our group, new people: “I thought I was the only one in [city in ON] with Parkinson’s.” They’re overwhelmed with gratitude that they find that we’ve got a little community here where we’re doing our best to help people understand it, and awareness of the disease. And the more it’s talked about, more people get aware of it, the better it will be. 

So my primary focus of course is spreading awareness about Parkinson’s, and I do that in the simplest ways. My husband can walk a little bit, so he’ll get out of the car and he’s walking into a restaurant or in a clinic where he’s had to leave his scooter in the hall, and he’s walking through the door and he freezes, can’t walk any farther. His body, his brain just shuts down and he’s stuck in the door and he has to give himself time for the neurons to get going—whatever it is, I don’t even know. You’d think I’d know that, but I don’t—for the dopamine to work and for him to be able to move through that door. I take that time to have a little mini workshop on Parkinson’s. And no matter who’s sitting in the waiting room, I’ll just say “Ladies and gentlemen, you’re looking at Parkinson’s disease,” and that, you’d be amazed what happens. A bunch of grouchy people sitting in a clinic, nobody’s saying a word to anybody, and all of a sudden “My grandfather had that.” And “Oh, my uncle has that.” And now we’re all talking about Parkinson’s disease instead of everybody sort of not wanting to look at my husband, making it more stressful for him. I’ve lightened up the room, and then he’s able to cope with getting through. And very often he’ll get even clapped: “You made it through the door!” And you lighten it up and say “Yeah, we’re coping with this.” We are coping with this in that way.

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