I’m grateful for the opportunity to participate in a citizen science project with the Michael J. Fox Foundation, by signing up for the Parkinson’s Progression Markers Initiative. There are enough categories that anyone can do it. I registered in ‘a certain age’ group with no symptoms or diagnosis; my brother who’s been recently diagnosed registered in the ‘anyone 18+’ group. He’s doing great with medication. There’s also a category for people diagnosed with Parkinson’s but not yet taking medication. There appears to be a link between loss of smell and certain degenerative brain diseases.
This study involves a ‘smell identification test’ which they mail to you, along with a pencil. You get four booklets with ten scratch n’ sniff patches in each book, use the pencil to scratch the patch, and then identify the smell to the best of your ability. Some of these were easy and a lot of them were hard. Kind of smelled like one thing, kind of like another, sometimes not like any of the options. But you have to fill them all in, so you take your best guess.
It was really fun, but awareness of chemical scent residue lingered in my nose for hours, even after a brisk walk up the driveway in driving wind. I was glad it was trash day, and pitched the booklets in the garbage can once I had entered the data online. It was very thorough, leaving no room for error, going through each page of each booklet one at a time, and then checking your answers at the end of each booklet. It felt good to contribute to this research to try “to learn more about how brain disease starts and changes and how to stop it.”
I won’t ever see the results of my test, so I won’t know whether that one patch was supposed to smell like watermelon or motor oil, cloves or apple. But I do think that my sniffer is in pretty good shape, as almost all of the patches smelled like something that was on the multiple choice list. I encourage you to check it out, have some fun, and contribute to this admirable effort sponsored by an admirable foundation started by an admirable and courageous man.