Ryan Reynolds Opens up About His Dad's Unexpected Parkinson's Symptoms: "I Wish We'd Known"
Actor Ryan Reynolds is well-known for his roles in movies like Deadpool & Wolverine (and his marriage to Blake Lively), but behind the scenes he and his family quietly struggled for years with his father’s Parkinson’s disease. Diagnosed in 1998 at the age of 57, Reynolds’s dad James rarely acknowledged the condition even as he dealt with the traditional symptoms as well as delusions and hallucinations that caught his family off guard. Now a father of four himself, Reynolds is finally opening up about the complicated relationship he had with his father, what he’s learned since James’s death in 2015 and how those difficult-but-rarely-talked-about Parkinson’s symptoms are worth discussing.
When I was younger and more self-righteous, it was easy to paint my father with a broad brush, to evaluate rather than observe him. And my assessments were binary — right or wrong, good or bad.
But I think people continue to reveal themselves even after they’ve died. And as I get older and see my own deficits and discover my own blind spots, I also see more nuance in him. I see a person who was fallible yet reliable. A person who worked hard to provide a life for me and my brothers, despite not having very much in the way of money.
My dad helped raise my brothers to be incredible people — good men equipped with integrity, strong core values and a working moral compass. To me, that means my dad was a very successful man. So when that solid family leader was diagnosed with Parkinson’s disease in 1998 at 57 years old, it shocked us all.
But my dad was an intensely prideful person. He barely spoke of the condition. If I were to venture a guess, he saw it as a weakness. He may have only uttered the word “Parkinson’s” three times between his diagnosis and his death. In a way, though, his denial brought my family even closer together as we searched for resources to try to help him.
With encouragement from my mom, my father sought treatment for his Parkinson’s. For a long time, he was on all the right medications for his physical symptoms — tremors, stiffness and loss of balance — and with the increased mobility came optimism. The disease was hard but manageable with treatment.
An unexpected Parkinson's progression
A few years after his diagnosis, though, my dad started experiencing episodes of delusions and hallucinations. Losing touch with reality took a toll on him, my mom and our whole family. This part of Parkinson’s was more challenging than the motor symptoms — for all of us. Sadly, it seemed the better his body was, the worse some of these other symptoms became.
I watched as my mom tried to carry the burden of caregiving alone. I found myself kind of disengaging from my father and trying to separate my mother from the situation which felt hopeless for her. In retrospect, I probably contributed to some of the isolation and loneliness he might have felt around this. I just don’t think I was necessarily equipped to understand that at the time.
Parkinson’s is a disorder that affects the entire central nervous system. That means that in addition to the motor symptoms many people are familiar with like tremors and rigid muscles, it can also cause non-motor symptoms such as anxiety, forgetfulness, hallucinations and delusions. We thought we knew what to expect, but our family wasn’t aware of these other symptoms.
It turns out about half of the one million people with Parkinson’s experience hallucinations and/or delusions, but up to 90% of them don’t let their doctors know about these symptoms. Maybe they’re frightened or embarrassed. Maybe they’re afraid of what this means for their disease progression.
Looking back, I wish we’d known, but we didn’t have the resources we have today. I imagine my dad would have liked to know that the issues he was experiencing were part of his Parkinson’s journey and nothing to be ashamed of. My father was never particularly forthcoming about his interior world, but I have no doubt he’d have felt less alone if he’d been aware. Actually, I think that knowing more about this would have made it a little bit easier for all of us.
Hope for the future
That’s why I've teamed up with Acadia Pharmaceuticals, the maker of Nuplazid (a medication approved by the Food and Drug Administration to treat hallucinations and delusions in people with Parkinson’s) to launch their More to Parkinson’s campaign. Our hope is to educate and drive conversation about recognizing and managing non-motor symptoms of Parkinson’s, including hallucinations and delusions.
It’s important for people with any serious health condition to let their doctors know about all the symptoms they’re experiencing. Sometimes it can open your eyes to new information and sometimes it can open the door to new treatments. If my family had known what we now know about the link between hallucinations and delusions and Parkinson’s, we would have been better prepared to help my father.
My dad has been gone now for nearly a decade. I think it’s true that you never really appreciate the sacrifices and the devotion of time parents give their children until you have your own — and I think that’s probably a good thing. Kids should be able to expect that. They should almost take it for granted because that’s what safety feels like. I have enormous respect for the love and time I was given by my parents. I even respect and love the rockier moments because all those roads have lead here. And I hope sharing my story helps other families navigate their own difficult roads.
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