My Parkinson Story is a weekly column featuring member of our community, sharing their stories with PD. We are interested in sharing a wide array of experiences, including yours! PD looks different in everyone, and affects everyone differently, including friends and family of those with PD. If you’d like to share your story on our blog, please email us.
I am not sure how many attempts it took me to write this blog post. For the longest time, I had no idea where to begin this piece.
For those who do not know me, I am the Assistant Director of Parkinson Support and Wellness. The short version of my Parkinson story is that in early 2019, my dad was diagnosed with PD. I started to volunteer for the Steady Strides committee in 2020 and was then hired when they were looking for a third employee. Really though, it is a longer story than that.
Growing up my dad packed my school lunches, helped me do my ponytails, drove me to school, and played hide & seek with me when I got home from school. He brought a lot of joy to my childhood. My dad reminded me constantly what a hard worker I was. He coached my basketball team. He attended all my dance recitals alongside my mom. He stood up for me when some teachers were not kind to me. He comforted me when I had a hard time making friends in elementary school… I hope it is clear that I am close with my dad. I am close with both my parents actually.
The author with her parents.
It was the end of January 2019 when I got the news that Dad was diagnosed with PD. I was at a meeting with a potential volunteer recruit for the nonprofit I worked for at the time when I got the call. I first let it go to voicemail but picked it up when Mom called me again. I don't remember much after my mom told my sister and I on a conference call that Dad was diagnosed with PD. I do remember panicking and trying to get out of that coffee shop to my car. The barista covered my drink I believe... or the person I was meeting with. I have no idea really. I never heard from the volunteer again…I’m not surprised. I got to my car and phoned my then-boyfriend. I started to sob. Later that night, I met my parents for dinner. That day is a blur but I do remember my Dad being quiet and yet somehow strong— always strong from his girls. That was his goal. Even with being diagnosed, he was putting us first. Now it was our time to put him first.
I slowly shared with my closest friends the news. I knew Dad would not want me to blasting this news to everyone. He is a private person. I had many friends show me sympathy and gave me gentle reminders of how they would be there for my family and me if needed.
Two months after Dad was diagnosed, I was laid off from my job, and then over the summer I was forced to move. A week before I moved, my then-boyfriend ended our relationship (a blessing in disguise). All of this was happening while my family and I adjusted to my dad’s diagnosis… It was a lot. Still Dad tried to be there for me as best he could.
Then Covid came. I found myself on unemployment again and searching for meaning in my life. I decided to use my free time to volunteer. I volunteered at a cat shelter until I adopted my Clara. I also started to volunteer with my mom on the Steady Strides committee. A little into volunteering, Chris Gaffney told me I should apply for the position that PSW was hiring for. I did and well, here we are! I started working for PSW in October 2021 and today as I write this, it is April 2023.
I won’t lie, at times it can be really hard working for an organization that directly impacts my family. It can be extremely weird at times to have my personal life and work life so intertwined.
The first few months that I worked for PSW I was still in a place where I would start to cry whenever I discussed my dad’s diagnosis. I felt often at work that I could not bring him up and still be professional. I had a lot of growing pains my first year working for PSW. I had to learn that this was a community I could lean on and had to be vulnerable with. It did not make me any less of a fundraising professional. I now have friends who have PD. The community I serve has PD.
I am not grateful my dad got Parkinson Disease. I AM grateful it was diagnosed. That we have access to UC Health doctors who were able to figure it out, who were able to get him on medication. That medication has brought my dad back to me. A year or so before he was diagnosed, I felt my dad became distant from me. I thought he was mad at me or just didn’t like me anymore and I couldn't figure it out. The medication he is on— I have my dad back. He is his goofy, loving self again. THAT I am grateful for.
I am also grateful for the community I met through PSW. I am grateful for the resources that PSW has brought to my family and the PD community in Cincinnati.
My dad thanks me over and over anytime I help him and Mom with something. It is the least I can do for how much he (and mom) did for me growing up. I can no longer hug him as tightly as I want, so I show my love by helping him out the best I can. I am still learning how to best support my dad, my mom and this new community that welcomed me with open arms.