About the time that actor Ryan Reynolds began working on the original “Deadpool” movie, his father James died of Parkinson’s disease.
The elder Reynolds was 74 and had lived with the disease since his diagnosis at age 57 in 1998. In interviews, Reynolds has noted that his dad didn’t really talk about the disease — and they certainly didn’t talk about two of the lesser-known complications of the disease: delusions and hallucinations, which for James Reynolds started about halfway through the course of his Parkinson’s.
Ryan Reynolds and his mother, Tammy, are talking about it now, though. The two are part of a campaign sponsored by Acadia Pharmaceuticals to educate caregivers, patients and others about those under-recognized challenges. Wednesday, they launched “More to Parkinson’s,” which contains educational material and information for health care providers, family caregivers and patients. Front and center in the campaign is information about the role of delusions and hallucinations.
“I think that people are aware of the physical symptoms of Parkinson’s disease, but the emotional tolls, that’s huge. Took a huge toll on my dad. He would cry, a lot. And sometimes it wasn’t — didn’t feel like it was based in any kind of rational thought or idea, and I think, in part, it was that he really genuinely didn’t trust his own mind,” Reynolds says in one of the videos that explore Parkinson’s in the campaign.
Tammy Reynolds recounts the time her husband came home from a trip and was absolutely convinced that she was in the car with him, though it wasn’t true. Together, mother and son talk about the difficulty coping and the strain that the mental aspects add to caregiving.
Toll of Parkinson’s disease
The Parkinson’s Foundation reports that 90,000 people are diagnosed with the disease in the U.S. each year. By 2030, it’s expected that 1.2 million people in the U.S. will be living with the disease. The primary risk factor is age. It’s a progressive neurological disorder that typically hits adults who are 60 or older, though that’s not always the case.
National Geographic reports that as many as 90% of patients have no known genetic predisposition to Parkinson’s.
The More to Parkinson’s campaign notes that hallucinations include seeing things that aren’t there, such as people and objects. Some people hear sounds, music or voices that don’t exist. Delusions include paranoia and false beliefs. They can be extremely hard on relationships, as Reynolds points out, calling his own relationship with his father complicated.
About half of Parkinson’s patients experience some kind of delusion or hallucination. For some, it’s a regular occurrence. Often, those delusions or hallucinations seem very real and can worsen with time.
They’re also treatable. But help isn’t available if people don’t acknowledge what’s happening. It’s vital to talk to a physician about them, per Acadia Pharmaceuticals, which suggests the conversation can be important even before hallucinations and delusions start.
“There is no way to accurately predict which patients with Parkinson’s will develop hallucinations and delusions,” per the company.
The motor symptoms of Parkinson’s disease, according to More to Parkinson’s, are resting tremors, slowness of movement, rigid muscles and trouble with movement.
In addition to hallucinations and delusions, on-motor symptoms include anxiety, loss of mental acuity, constipation and impaired bladder control.
Caring for caregivers
Reynolds talks about caregivers fatigue and the importance of talking to others. He and his mom don’t sugarcoat how hard the caregiving was. Dr. Yasar Torres-Yaghi, movement disorders specialist at Parkinson’s Center of Excellence, said that caregivers sometimes become depressed and need help themselves.
Torres-Yaghi said it’s now possible to treat both physical symptoms and the mental symptoms of the disease.
As for Reynolds, he said that one of the ways he honors his father is by trying to help other patients and caregivers with Parkinson’s negotiate some of the challenges he, his mom and his brothers faced when James Reynolds became ill.
The campaign includes a number of videos featuring the Reynolds and exploring aspects of the disease.