Scientists have recently discovered that the skin of people with Parkinson’s disease (PD) has a unique scent. And MJFF-funded scientists are now working to define this scent as a potential tool to diagnose the disease earlier and more easily.
This finding was made, in large part, thanks to Joy Milne, a nurse whose husband lived with PD. Joy has a heightened sense of smell and noted what she describes as a musty, musky or yeasty scent on her husband long before his Parkinson’s diagnosis. She later noticed the same scent among people in his PD support group. Working with researchers, Joy helped to identify this signature scent, which may be a potential tool to diagnose disease. These types of tools, called biomarkers, are objective measures to diagnose and monitor Parkinson’s. Biomarkers are a main goal of MJFF’s Parkinson’s Progression Markers Initiative (PPMI) study. The study is recruiting volunteers who have been recently diagnosed with PD or who may be at risk for disease. (Learn more.)
Everyone, Parkinson’s or not, has a natural and specific scent. It’s created by many factors, such as diet, the bacteria that normally live on skin, health conditions, and others. The Parkinson’s scent seems to come from a waxy, oily substance (sebum) that protects and moisturizes skin and that is increased in people with PD. Parkinson’s medications or supplements don’t seem to play a role in this scent.
Rest assured that the skin odor associated with Parkinson’s is not noticeable to most people. (Joy is a “super smeller” who can smell things most people can’t.) But if you or your loved one notice a bothersome change in scent, try wearing breathable, odor-resistant, machine-washable clothing; showering twice a day with a gentle cleanser (some say Dial brand or similar soaps help); and using alcohol- and perfume-free body wipes to remove sebum from the chest, back and other skin areas that make a lot of sebum. For clothing, sheets and towels that might hold odor, consider soaking in diluted white vinegar before washing or adding a small amount of baking soda while washing. Your Parkinson’s doctor or a skin specialist (a dermatologist) can help you find the best treatment options for you. And others in the PD community can share their experiences and practical tips with symptoms like this. You can connect with and learn from others through MJFF’s Buddy Network.