Cindy Roach (right) hiking with her husband Jerry (left).
Cindy Roach wanted more. After singing, kicking and sitting up in her sleep, she was handed a REM sleep behavior disorder (RBD) diagnosis from a sleep doctor in 2022. RBD is a condition in which people act out their dreams and can be an early signal of Parkinson’s.
“He told me, ‘Most people with RBD get Parkinson's. There's nothing we can do for you. Give me a call when you start to have some Parkinson's symptoms, and then I'll refer you to a neurologist.’ And that was such a hard place to exist in – void of hope or optimism. So, I started looking for information.”
Cindy, 65, from Santa Rosa, California, found The Michael J. Fox Foundation and our Parkinson’s Progression Markers Initiative (PPMI). This landmark study follows participants over time to understand how Parkinson’s starts and changes and to speed cures. As a first step, Cindy took a smell loss test (another Parkinson’s risk factor) and was invited to enroll in PPMI at the University of California, San Francisco.
“It’s a way to take control of the situation and to meet physicians who understand more about RBD and its connection to Parkinson's. I feel like I'm influencing the future instead of just sitting back and waiting for some inevitable thing to happen to me. I am part of the solution, and in that lies the hope,” she said.
Cindy is aware that findings from PPMI (such as the new biomarker test announced last year) are driving plans for early interventions to stop Parkinson’s disease. She also hopes that PPMI will lead to more treatments for RBD. She currently takes 15mg melatonin and has about six to eight RBD episodes per month.
“It's such a life-altering condition; I hope that more treatments come out of this research,” she said.
She’s also pleased with the study team and their approach. “My coordinator is fabulous. She makes me feel at ease and is forthcoming with information,” Cindy said. “I would 100 percent encourage anyone with RBD to join this study.”
If you have RBD such as punching or kicking while asleep and do not have Parkinson’s, you can play valuable role in research. Your first step is to take a free scratch-and-sniff test.
Looking to meet others with sleep issues? Join The Parkinson’s Buddy Network and make connections in the Sleep Disorders & Parkinson’s group.