My Diagnosis
In the first weeks and months after diagnosis, I emailed or texted my social network and consistently misspelled the word “Parkinson’s” as “Parkenson’s.” I am blessed with a loving family and a network of close, connected friends. I never withheld the devastating news and everyone to whom I reached out was appropriately concerned and comforting. No one called out my spelling error.
Initially, I recalled my dad who had succumbed to PD complications in his 80s. I feared ‘like father like daughter,’ I would soon be diapered and tied around the waist into a wheelchair in a nursing facility—visited in short, uncomfortable bursts by people furtively glancing at watches or cell phones to check the time and then leaving. My dad was active and proud until PD picked him clean.
My Options
But I have options my dad never had.
First, I am fortunate to live in an era when computers and the web facilitate continuing correspondence even on days when I hole up in my pint-sized condo both abhorring and embracing my solo existence. Advanced communication supports web sites like this one to offer a landing page and launch pad for outreach and inreach. Second, in the late 1990s, as PD crept across Dad’s brain and body, we didn’t know any organizations or programming where he could spend time with others like himself. He had no network—he was stacked uneasily in a general nursing facility where many others could still verbalize and move about. And that is an essential distinction. He lacked the fellowship and community that I am discovering.
My People
As the days since my diagnosis flow past, I am learning more about the PD network. To be sure, my more able friends are kind to me. They are empathic about the challenges I face. I welcome every chance to be with them. But face time can become intimidating. Sometimes over lunch I swallow wrong and choke. I may have trouble forming words. PD symptoms show up without warning and I have no time to plan. That makes me anxious around my home base. But when I attend Chicago-area PD programs, I feel at ease.
If I choke or twitch—so what. Others are doing the same. Conversations move slowly and I can keep pace. In a PD crowd representing many levels and stages of disease, I slide into an empty seat at any table, trusting my inherent connection to those already seated. PD events are a safe space where the newly emerging me can belong. Drink water and drool a bit—no problem. List a bit too far right standing to walk to the Ladies Room—so what! They accept me—I accept me.
My Worlds
Currently, I move between both worlds. I still work, doing communications for a global company headquartered in Chicago. I continue to engage enthusiastically with friends and family. I exercise at a mainstream health club and PD has intensified that commitment. But a new tribal circle is in place. With specialized classes and programming. With group speech practice sessions. With socializing events and informational materials. PD arrives with its own set of hard choices and challenges—and its own set of nuanced and nurturing rewards.
I will never again misspell the name of this disease. I totally appreciate the “kin” in Parkinson’s.
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Ellen B. Pritsker is a Chicago-area writer and communications specialist. A Chicago native, she holds a BA from the University of Michigan and a Certificate from The Family Institute at Northwestern University. Single, she is the proud parent/grandparent of three sons and five grandchildren. She was diagnosed in the fall of 2019 with Parkinson’s Disease