Swallowing and aspiration in Parkinson’s

For most people, swallowing seems like one of those automatic parts of life, like your heart beating  or breathing.

Parkinson’s compromises the automatic part.

A patient can have a hard time controlling their saliva in the ways healthy people are able to and instead, a perfectly respectful man- like my husband Andy- can unexpectedly discover a line of drool falling from his mouth. At most meals he endures some choking and coughing.

One of the most annoying things about living with Parkinson’s is that certain symptoms cross a line from being able to fit into the manners and expectations of society. When we were at my parent’s country club, with about 100 of my Mom’s friends, who were all there for my Dad’s celebration of life ceremony, Andy had a choking fit. Luckily, 100 people talking make a cacophony of noise and the only ones who heard were the people at Andy’s table.

“Can I get you some water?” One of them said.

My unconcerned attitude is noticed with dismay until I explain, “Don’t worry. This happens all the time with Parkinson’s. He aspirates food and drink and has to cough it out. Water won’t help him, he just has to cough. Coughing is really a good sign and means the silent aspiration is being addressed in the only way possible.”

Explaining gets old for me but I’m willing to bet choking gets even older for Andy.

Drooling is another matter because drooling is never socially acceptable. For us, it has only been an issue in this 18th year of living with this disease. I have to admit that I am in the process of grappling with how to live well with this symptom. It’s the early days of us living with this and for me writing about it.

I am still shocked when I see Andy with drool falling from his open mouth when he’s making art with a torch, looking for something in the garage or leaning over his razor trying to replace the batteries. Yes, it does gross me out. I am not immune.

“Andy you’re drooling.” I say.”Get your paper out and catch it before it falls on the floor. But he forgot to have paper, after all this is also new for him. We do the best we can.

I’m sharing all this to show that there is always something hard to deal with. In Alessia Cara’s song, Scars to Your Beautiful, the lyrics say: “You should know you’re beautiful just the way you are/And you don’t have to change a thing/ The world could change its heart/ No scars to your beautiful/ We’re stars and we’re beautiful.”

Andy and I have to change our own hearts while living with the hard symptoms of Parkinson’s and we live with the hope that we will inspire the world to do that too.