In September of 2021, as I was reviewing charts to prepare for my initial visit with new members Frank and Pat, I noticed the name of a diagnosis I was unfamiliar with: progressive supranuclear palsy (PSP).
Below Frank’s PSP chart entry was a note: “Laura, I was diagnosed with progressive supranuclear palsy in 2018…. I had back fusion surgery at TMC in October of 2014. In 2016, I had a neurostimulator planted in my hip to alleviate pain. Thanks, and I look forward to our meeting.”
It is a true joy and honor to feature Frank’s photography throughout the Heart at Home newsletter as it offers a view into his authentic self.
I was likely not alone in not knowing about PSP. As I reflect back on the note, I see that Frank was inviting me to be curious about this uncommon brain disorder that causes the deterioration of certain brain cells that control our movements, coordination, cognition, and other bodily functions. Frank was offering highlights of his medical chronology as a foot in the door. It was a passport-sized version of his story, but there was a bigger picture.
Frank and Pat have a mission to educate others about PSP. They welcomed our EH team to look behind the lens for a closeup at the landscape of their lives as they navigate the mountains and valleys of living with PSP. As Frank provided a detailed chronology of his medical history during a recent visit, I heard echoes of the heartache, the dreams lost, and the courage found to carry on and through.
Frank and Pat shared some of their everyday situations. For example, Pat mentioned that it took Frank a couple of days to recover after sitting up in his wheelchair for an extended period, enjoying time and conversation with good friends. Hard as this was, prioritizing quality time with friends seemed a good decision in the end.
Frank emphasized how important it is that those who care for or work with him know how sensitive he is to external stimuli like background noise, and that he can react to it with increased agitation. He is less able now to receive verbal communication delivered at a fast pace, with multiple words or steps to follow. When his mind is allowed to catch up, when he is allowed to speak for himself, he can communicate verbally with caregivers, healthcare providers, family, and friends.
Recently, I asked the couple a question—one I knew Pat may have had a ready answer for. But I saw her pause and wait. Silence filled the air. The question was this: “On your most difficult days, what keeps you going?”
And then Pat adds, “And we put one foot in front of the other.”