When members of the general public think of someone with Parkinson’s disease, shakiness is probably what comes to mind.
But as anyone who cares for or loves someone with the disease knows, not everyone with Parkinson’s experiences tremors. Parkinson’s is called a “snowflake disease” because just as every snowflake looks different, the disease looks different in everyone who has it. Although some other Parkinson’s symptoms, such as stiffness or slow movement, may be obvious, some symptoms may not be apparent to the naked eye: mild memory and thinking issues, loss of smell, vision changes or fatigue, for instance.
Other symptoms for some who have Parkinson’s include hallucinations and delusions. And now, thanks to an educational effort with star power behind it, more members of the general public may become aware of those symptoms.
Actor Ryan Reynolds and his mother, Tammy, have partnered with Acadia Pharmaceuticals on a national campaign — More to Parkinson’s — to raise awareness of those nonmotor symptoms of Parkinson’s disease. Acadia developed and commercialized pimavanserin (brand name Nuplazid), the only FDA-approved treatment for hallucinations and delusions associated with Parkinson’s.
Ryan’s father and Tammy’s husband, James “Jim” Reynolds, passed away in 2015 after living with Parkinson’s for about 17 years. Pimavanserin was approved by the FDA in 2016.
“My father experienced hallucinations and delusions. At the time, we didn’t know any of these types of symptoms were part of his Parkinson’s disease,” the actor said in a statement issued with the campaign launch. “Like a lot of caregivers, my mom mostly tried to carry these burdens alone. I wish I’d known Parkinson’s disease wasn’t limited to only motor symptoms.”
According to research cited by Acadia, about half of people living with Parkinson’s disease may develop hallucinations or delusions over the course of their disease (usually as a result of medication they are taking for the disease), but up to 90% of them do not proactively tell their physicians about those symptoms.
Even more important than general awareness, the campaign will try to raise awareness among people living with Parkinson’s, as well as paid and family caregivers, of the importance of discussing symptoms so they can be managed better and so the quality of life for those living with Parkinson’s, and their caregivers, can be improved.
“I think people and families affected by Parkinson’s can be better prepared to manage hallucinations and delusions if they’re talking early and often about this lesser-known aspect of the disease,” Ryan said.
In a series of videos that are part of the campaign, Ryan and his mother will discuss their personal experiences from the perspective of a son and caregiver, as well as a wife, mother and caregiver, over the course of Jim’s disease. Other parts of the campaign will focus on who is at risk of having hallucinations or delusions, what those symptoms may look like, how to discuss symptoms and treatment options with a physician and more.
Of course, many working in senior living already are aware of the specifics of the disease and related issues. Twenty-five percent of the approximately 1 million people living with Parkinson’s in the United States reside in long-term care settings such as assisted living communities and nursing homes, according to the Michael J. Fox Foundation for Parkinson’s Research. (Ryan, in fact, has been on the MJFF board for about 15 years, according to a post he recently shared with his 54 million followers on Instagram and 21 million followers on Facebook. Those posts, made at the launch of the More to Parkinson’s campaign, have received almost 575,000 likes on Instagram and 20,000 likes on Facebook as I write this, so it appears that that Acadia made a good choice in partnering with him and his mother on its awareness campaign.)
If half of the long-term care residents who are living with Parkinson’s have hallucinations and delusions, that could mean that the more than 100,000 residents and their families, as well as those who work in senior living and care for and interact with them, could be among those who increase their knowledge through this campaign. At a minimum, the campaign serves as a reminder of the importance of communication between residents and patients and their people who care for them.
Lois A. Bowers is the editor of McKnight’s Senior Living. Read her other columns here. Follow her on X (formerly Twitter) at Lois_Bowers.
