Guest Voice: What de facto parenting can teach us about Parkinson’s
There are a million interesting things about my dad apart from this disease
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I’ve heard that the first child in a nuclear family, particularly the first daughter, often assumes a de facto third-parent role. I imagine this doesn’t mean the child actually parents a parent or is equipped to handle the kinds of difficult conversations that parents have between themselves, and for good reason.
My dad, Arman, was diagnosed with early-onset Parkinson’s disease when I was 13. Being the nosy teenager that I was, I sensed something was wrong, so naturally, I badgered my parents until they confided in me about what was happening. As the precocious “third parent,” I felt both entitled and mature enough to harbor a secret from my younger siblings.
I handled my grief privately, the way I imagined a parent was supposed to, and still largely do to this day. This predilection showed up over the years as our family researched and discussed potential new treatments, experimented with different therapies and gadgets, and fielded invasive questions from acquaintances at the grocery store about my father’s condition.
Recently, I felt myself slipping back into this mode when my dad suffered a serious fall that left him hospitalized for weeks. I remember waking up to my mom crying to my husband on the phone, realizing later that I had failed to react to what was happening myself. My heart rate didn’t rise, and my anxiety didn’t spike.
The alarming accident felt like something I had already imagined, processed, and accepted many times before within the privacy of my own mind. When this fear finally became reality, I was already a practiced stoic, comforting others in my family whose tears I was unaccustomed to seeing, and explaining to those who felt powerless that all my dad really needed was for them to check in the way they would with any other family member or friend on the mend.
As tired as I am of others centering Parkinson’s as their frame of reference for my dad’s identity or the focal point of their relationship with him, I know I still do it, too.
Everything he’s always been
Recently, my parents embarked on a cross-country flight to visit me in my new home in California. It was their first big trip since my dad’s fall. I insisted that my dad use a wheelchair for our daily excursions to ensure that everyone else in the family could enjoy the trip as much as possible. I didn’t want them to be laser-focused on surveilling for unsteady movements through unfamiliar spaces during moments that were meant to be spent relaxing.
I tried to frame this accommodation as positively as I could for my dad, counseling that he, too, would be able to enjoy things more if he was less fatigued and at a lower risk of hurting himself again. Although he ultimately conceded, I don’t know if he really saw it that way – especially when I accidentally pushed his chair over a pothole and nearly launched him out of the seat.
What I really want to highlight, though, is that there are probably a million things about my dad, and surely everyone who deals with Parkinson’s, that are much more impressive and interesting than the way he has tackled the disease. For example, he has the most eclectic taste in music. I am constantly awoken far too early at my parents’ house due to his incessant toggling between country, Broadway, and heavy metal songs while — despite the long battle his body continues to wage against Parkinson’s — he does 30 interrupted pullups as a workout warmup.
Here are a few other facts about my dad: He likes his food as spicy as the kitchen can make it. He has authored medical textbooks and received multiple teaching awards while he was still a practicing physician. He has the loudest laugh (and sneeze) in any room. He was a barroom brawler in college and never lost a fight.
I guess the bottom line is that, despite a life-changing diagnosis, there is no reason people with Parkinson’s can’t still be everything they always have been. They have impressive résumés, they made stupid mistakes when they were young (and still do sometimes), and they have stories to tell, most of which are not about this disease. They are someone’s child, someone’s sibling, someone’s friend, someone’s parent. They are deserving of consideration well beyond our concern. Take it from me, a de facto parent myself.
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Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Parkinson’s disease.
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