1. Krotzer, Minter


Resisting the rising tide of Parkinson's.


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"I'd like you two to have a conversation every night after dinner," Hal's speech therapist said to us.

Figure. Illustration... - Click to enlarge in new windowFigure. Illustration by Barbara Hranilovich.

That will be easy, I thought. We talk all the time. Or at least we try to. Over the years, Hal's Parkinson's disease has made him difficult to understand. His vocal cords have restricted movement and it is hard for him to make it to the end of a sentence. He often swallows his last words or they just barely come out. Sometimes he sounds like he is underwater-the words indistinguishable from one another, blurry and pitchless.


"There was a study," she said. "Most couples talk about logistics, things that need to be done. They don't have substantial conversations."


And over the 17 years since Hal's diagnosis, it had become the same with us. In our case, though, it was because of Hal's speech. We tended to minimize what we said to each other in the interest of comprehension and frustration.


"Start out talking for 20 minutes and then build up to 30," she suggested, as a personal trainer would prescribe the number of sit-ups or triceps curls, "and remember to start at the end of the meal, after he has finished eating." After dinner, rather than during, because of the danger to Hal-the possibility of his choking on or aspirating food.


"How long do you want us to do this daily conversation thing?" I asked, taking notes.


"Forever," she answered.


And so we began our after-dinner talks, at the table with candles burning, our real conversations about topics we'd chosen. We each had a list. Sometimes the 20 minutes seemed to go on forever, and we'd stop too early. But then I started timing the conversations with the kitchen clock. At first our efforts were minimal and tired, talking because we knew we had to; but then we started getting into it, taking turns with themes. We talked about books we read and films we'd seen. We shared ideas about our writing projects. It was often frustrating to try to understand Hal's sentences, but eventually I could, even if it took two or three repetitions. It was like the conversational French classes I'd had in high school-talking to someone in a language you were just learning, trying to grab onto the words you understood in the midst of those you didn't. The difference is that in learning a foreign language, you gradually come to understand more. But in Hal's case it doesn't get easier.


I have always learned something about Hal during our after-dinner talks, even though we have been married for 12 years. He explained he needed my help walking down the street, something I had been waiting for him to bring up, and that he preferred for me to hold out my elbow instead of asking him. We've talked about his early career as a poet, before I knew him and before the Parkinson's diagnosis, when he performed in nightclubs and performance spaces.


As pleasurable as the after-dinner conversations have become, they are often still effort filled and tiring, and we usually end at the designated time. For Hal, it is exhausting to have to carefully say each word, practicing intonation and pronunciation while remembering to breathe. I try to understand him, even though his words can be interpreted to sound like almost anything. The distortions can be humorous and we sometimes laugh about them-I'll think "just saw" was "chainsaw" or "chicken" was "children." I have to make sense of the words in context of the conversation and subject matter. I keep reminding him to scream because a scream in Parkinson's comes out like a regularly spoken sentence to the listener, even though it's a scream to Hal. It's the same with walking and writing: when Hal thinks he's taking big steps, they are small, and large letters turn out on the page to be indecipherably small "micrographia." It's the miscommunication between the Parkinson's brain and the body.


His therapist had explained the forever part of the assignment this way: "His vocal cords need practice. He has to keep talking, no matter how hard it is. The more he keeps quiet, the less practice he'll have and the more they will weaken. It will become harder for him to talk at all."


Hal always says Parkinson's is not his identity, and it isn't, as long as he doesn't let it claim him, or as long as it doesn't claim us. In giving up our attempt at communication, we would be allowing the illness to take over. That's when it becomes your identity: when you let it be the boss.


Our after-dinner conversations have now become a lifeline, a way to hold on to the pleasures of daily life that Parkinson's is always trying to take away from us. In telling our stories and sharing our thoughts, in striving to be understood and to understand, we are not claimed by the illness that shadows our life together.