For years, TV and movie veteran Michael J. Fox has been the celebrity face of Parkinson’s disease — performing massive fundraising, education and awareness. Now enters movie star Ryan Reynolds boldly into the picture.
Unfortunately so. But yet somewhat fortunate for long-term care pros, who can benefit greatly from Reynolds’ personal experiences and subsequent advocacy work.
It kicked into high gear last week with the unveiling of the More to Parkinson’s awareness campaign that Reynolds and his mother, Tammy, are promoting with the support of Acadia Pharmaceuticals.
Although Fox and many Parkinson’s patients openly display stiffness or obvious shaking movements, there are many other signs and symptoms that could tip off caregivers and family members, who could then hasten earlier and better treatments.
The Reynoldses know some of them all too well. Ryan’s father, Jim, died in 2015 after living with Parkinson’s for about 17 years. During that time, Jim suffered from some of the lesser known symptoms that may not be so recognizable but that providers nonetheless need to be aware of.
“What hit the hardest was the Parkinson’s-related hallucinations and delusions,” explains Reynolds in a video clip.
The More To Parkinson’s campaign includes many such testimonials from Ryan and Tammy, and advice for anyone who may encounter someone with full-blown or developing Parkinson’s. The hallucinations and delusions can be devastating to deal with, notes the Canadian-born star of the “Deadpool” movies.
The youngest of four boys in the family, Ryan was in his early 20s when his dad’s symptoms first appeared.
“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.”
Hundreds of thousands affected
About a quarter of the approximately 1 million people living with Parkinson’s in the United States reside in long-term care settings such as nursing homes and assisted living communities, according to the Michael J. Fox Foundation for Parkinson’s Research.
That means an awful lot of Parkinson’s patients already are being served in long-term care facilities. The uncertainties of the disease mean many more may be in a pre-diagnosis state.
As many as 90% of the half of Parkinson’s patients who develop hallucinations or delusions do not tell their doctors about them, according to research cited by Acadia.
The company developed and commercialized pimavanserin (brand name Nuplazid), the only FDA-approved treatment for hallucinations and delusions associated with Parkinson’s. Pimavanserin was approved by the FDA in 2016, the year after Jim Reynolds died.
“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.
LTC rings in
With somebody like Reynolds pushing the narrative, people will talk and take notice. Long-term care providers should be among them.
Sector leaders know it, too. Widespread education is needed for identifying symptoms, especially in rural areas, emphasized one-time Director of Nursing of the Year Jacqueline Vance to me on Thursday.
“This is a problem not only for the public, but in LTC. There’s so much more than motor symptoms,” she said. “Nursing staff need that education on what to monitor. The big takeaway is educate, monitor and report.”
For as Reynolds and his family can attest, unfortunately there’s sometimes much, much more to Parkinson’s than meets the eye.
James M. Berklan is McKnight’s Long-Term Care News’ Executive Editor and a Best Commentary award winner in the 2024 Neal Awards, which are given annually for the nation’s best specialized business journalism.Opinions expressed in McKnight’s Long-Term Care News columns are not necessarily those of McKnight’s.
