Marcy Schaeffer, 68, is a volunteer in the Foundation’s landmark Parkinson’s Progression Markers Initiative (PPMI). She lives with smell loss, which can be an important signal of risk for Parkinson’s disease.
The Michael J. Fox Foundation is asking everyone age 60 and up without Parkinson’s to request a simple scratch-and-sniff test today at mysmelltest.org/mjff.
It all started with a smell test. Yes, a scratch-and-sniff smell test! Did you know that loss of smell CAN be an early sign of Parkinson’s disease? I started to lose my sense of smell about 10 years ago. But I didn’t realize how severe my smell loss was until a friend pointed out the strong scent of marijuana coming from a factory right by my gym. I could not smell a thing.
In January, I signed up for a smell test through the Parkinson’s Progression Markers Initiative (PPMI), which is a research study sponsored by The Michael J. Fox Foundation. I received four booklets in the mail, each containing 10 scratch-and-sniff strips. Out of 40 scents, I could only identify one. One odor out of 40. Ouch! That was a frustrating realization.
In February, I was asked to participate in another phase of PPMI to help accelerate research toward new treatments and a cure for Parkinson’s. Two months later, I traveled to the University of Pennsylvania Hospital in Philadelphia for several tests. In addition to bloodwork, a skin biopsy and an MRI, I had to complete a variety of cognitive tests. They included the one that the doctor asks those of us on Medicare to complete… count backward from 100 by seven. In a year, I’ll return to the hospital to complete those tests again. This is one small thing I can do to help advance research.
I spend five days a week at Titan Tactical Strength and Conditioning, a gym located in Shamokin Dam, PA, teaching and/or assisting with exercise classes for people with Parkinson’s disease. Our Parkinson’s athletes are awesome! Some of them participate in Rock Steady Boxing and others participate in PWR!Moves classes. They support one another, work hard, have fun, and their camaraderie is heartwarming. Participation in PPMI is my way of honoring these athletes, and all those folks who are living with Parkinson’s disease. I’m happy to contribute to this research and hopefully it can help solve the puzzle that is Parkinson’s.
Central Pennsylvania, where Shamokin Dam is located, has been identified as an area of the U.S. with a higher incidence of Parkinson’s. Why? Is it because of chemicals used in farming, or the chemicals that spewed from factories, especially those that existed in the mid to late 1900s? We all need to work together to find answers to these questions. We need to work together to find new treatments and a cure for Parkinson’s.
If you’re age 60 and up without Parkinson’s, request a free scratch-and-sniff test today and contribute to important research at mysmelltest.org/mjff.
PPMI is open to anyone over age 18 — with and without Parkinson’s — in the U.S. Learn more and join the study that’s changing everything.