Parkinson’s expert Lianna Marie, CEO of AllAboutParkinsons.com, joins Suzanne to talk about coming to terms with a chronic illness such as Parkinson's that changes your life.
One thing that comes with it is a stigma, so there's a level of embarrassment. Some might see someone with a tremor or stooped posture, or walking wobbly, all Parkinson's symptoms, but someone might assume they're inebriated. Or how they're speaking slower, or quieter, and people assume they might have an intellectual disability. Those are common ones, and because of that you can imagine someone with Parkinson's living with it, and they see their challenges being beaconed, and they'd be embarrassed about potential attention. It's a personal vulnerability, of feeling exposed, and it comes with feelings of uncertainty.
Lianna says, "With my mom, when she was a little embarrassed about that tremor, I guess a lot of times it would be out in public when we'd go out for dinner, for example. She didn't like the attention when she'd walk into the restaurant. Again, not that everybody was staring, but in her mind, everybody was staring. Cramped spaces often would make her slow down or abruptly stop, which many people with Parkinson's experience. And so when that would happen, instantly, she's like, "Oh, my gosh, all eyes are on me." Those were some specific things that could happen, or would happen with her. It did take some time for her first of all to just accept it, relax about it... And they may not even be thinking that. In her mind, everybody's looking at me. I guess it's not unlike a lot of people who have disabilities don't want the attention. Like, hey, I'm in a wheelchair, so what?"
One bit of advice she provides is humor. "You need to say, 'You know what? I'm owning my life here. I have Parkinson's, but Parkinson's doesn't have me.' It's easier said than done, taking yourself a little less seriously, because at the beginning there's so much about you, and you're so focused now on that tremor, the slurred speech, or whatever it is that is attracting people. Easier said than done. Especially at the beginning, it takes time. I'm not saying that this is an easy task, but in general, the more we can take things a little less seriously, add a little humor and playfulness. And Michael J. Fox is great at making jokes about himself, like when he falls or, or something like that.
Regarding how to set guidelines or boundaries with their friends, Lianna says, "It is awkward, right? I try to talk to people with Parkinson's and ask them, what is your preference? You have this thing, and it's helpful when a person with Parkinson's does say, 'hey, I'm still the same person and yeah, look at my hand over here. Yeah, it's got a mind of its own and it's gonna move around while we're talking. But yeah, you know what, I'm still me, let's just still have this conversation. But if you need to ask me questions about what's going on with my body...' It's an individual thing because some people are very private, and they're like, 'I don't want to talk to you about my medical diagnosis.' Let them lead the conversation when it comes to Parkinson's. And and otherwise, just be there, and offer to say, "hey," because a true friend does that, they don't bail on you and just say, 'oh my gosh, you've got a disease, and now I'm out of here.' Just be that friend still. Try not to make it all about Parkinson's."
Listen to more of Lianna's podcasts on Answers for Elders and visit Lianna's website.
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