The woman who could smell Parkinson’s

I found Joy’s simple enthusiasm very charming, but I, like many others, was also a little intimidated by her nose. Radio journalist Alix Spiegel interviewed Joy several years ago for a story on NPR. Alzheimer’s, which Joy can detect, runs in Spiegel’s family. “If she could smell it, would I be able to tell?” Spiegel wondered in her report. “How good was her poker face?” Joy has a policy of not describing the smell of disease to people she meets, and she politely deflected Spiegel’s questions. For whatever reason, she was more straightforward with me. One morning in her living room, she commented, without being prompted, on my “strong male scent.”

I was surprised. I said, “I wasn’t going to talk about this subject.”

“No, no, it’s not like that,” Joey reassured me. “It’s a typical male scent, almost like salt and some chemicals. And it’s pungent, but deep. When it turns into that creamy scent, and loses its pungent smell, I’m like, oh, what’s wrong?”

It was a relief to receive a certificate of sanity. (Given Joy’s general privacy policy, I wondered if maybe she was lying to me, but I concluded that she doesn’t lie without prompting.) On the other hand, it was uncomfortable to know that she was smelling me. Our notions of privacy are calibrated according to the average other person’s sensory abilities. We learn to live with the reality that, if someone is just a foot away, they might see the tiny pimple on our chin, or smell our breath, or maybe hear the sound of our saliva. But we assume that at a slightly greater distance we are safe, that these intimate embarrassments will pass undetected. I’m happy to say that I’m not a smelly person, or so I’ve been told, but it was hard not to worry about what else might reach Joy’s nose, besides my “male scent.” Nor is this always straightforward for Joy. She smells the stench of disease everywhere without even looking for it: at the checkout at Marks & Spencer, on the street, in her friends and neighbours.

When we met, Joy told me that Les’s mother was not the only other family member to be diagnosed with Parkinson’s. Eventually, she discovered that Les’s maternal grandfather, his maternal uncle, his estranged younger brother had also been diagnosed with Parkinson’s. Apparently she had inherited the disease and, given its prevalence in Les’s family, it was almost certainly an autosomal dominant form, i.e. a form that was very likely to appear in her children. In all likelihood, at least one of her and Joy’s three sons will have inherited the gene.

Joey refused to discuss any genetic testing of his sons, and although he promised several times to get me in touch with them, he never did. I saw no respectable reason to pursue the matter. In the abstract, however, I can imagine him — the father himself — choosing to remain ignorant of his inheritance and his potential fate, as opposed to choosing to know it. “Some of us like to feel the wind of God on our faces, and others like to have everything planned out,” write legal scholars Herring and Foster. “Each person should be allowed to choose how he deals with his future.” Joey will certainly have no such choice. The wind of God is always blowing; his nose cannot help recognizing whatever tragedy may be about to occur. Whatever his own wishes, he will know it.