Despite its name, our Parkinson’s Precision Medicine Initiative (PPMI) is not only for those with Parkinson’s. In fact, that’s the case for Allen Dance, 61, of Richmond, Virginia, who joined The Michael J. Fox Foundation’s (MJFF) landmark study after being diagnosed with REM sleep behavior disorder (RBD).
RBD is a condition that causes people to act out their dreams (in Allen’s case — gesturing, speaking and laughing while asleep). “My partner and I occasionally have to sleep apart because I may strike her by accident while dreaming,” said Allen.
RBD can be burdensome for the person living with it, as well as their bed partner. “I’m a naturally positive person, but it does sadden me when I wake up in the morning and find that my partner had to go to another bedroom because my dreams woke her up during the night.”
RBD is also a risk factor for Parkinson’s disease (PD). As a former athlete, Allen was always hyperaware and particularly proud of what he could do with his body. The idea that he may one day develop Parkinson’s stunned him. Although RBD is considered a possible early indicator of Parkinson’s, it doesn’t necessarily mean someone will develop the disease. Still, his partner, Kathleen, urged him to join PPMI. As someone who was already familiar with our Foundation, he readily agreed.
“I feel the need to contribute to research and help with the process if I can,” Allen said about participating in the clinical study. “That’s how you’re going to understand what the signs and indicators are, by tracking people.” His participation is imperative to our end goal of stopping Parkinson’s. Understanding the connection between RBD and PD goes a long way in terms of a cure.