Exactly a year from today, I will be getting married. If you’d asked me a month ago if I thought my dad would still be here to see that, I would have said “no.” I’m still not sure if he will be able to walk me down the aisle unassisted, or if we will have a father-daughter dance. The future has been rather uncertain lately.
My dad, Jim, was diagnosed with PD when I was 12, so it has been part of my life for almost as long as I can remember. There is no “Before PD” for me, this has just always been my family’s reality, and for the most part, we’ve been pretty lucky. My dad’s particular brand of PD has progressed steadily, but slowly. We have had access to an amazing team at the UCGNI and found a wonderful network of friends who truly understand the challenges of living with PD, but also are quick to point out that living well with Parkinson’s is an attainable goal.
Many regular students from Dancing with Parkinson’s pre-pandemic.
We didn’t find any of these wonderful supports until about 10 years ago, when I stumbled upon the pilot class for Dance for PD® in Cincinnati. I was immediately interested in this program that combined the two constants in my life: I grew up a ballet dancer, and PD certainly wasn’t going anywhere. I got trained in the Dance for PD® methodology and with two other teachers, Nancy Fountain & Mary Kamp, founded the local Dancing with Parkinson’s classes in 2012. That class led to more joy and opportunities in my life than I ever could have imagined. I have made fantastic friends and found role models through this intrepid group of dancers, and the last few years I have been lucky to have my parents as students in the class as well. My dad discovered that not only did he like dancing, but the fluidity of the motions made him feel better; I got to experience the joy of tap dancing, waltzing, and working on ballet repertoire with him. This year, I am proud to announce our program is expanding from our home at the Wyoming Fine Arts Center on Wednesdays to also include classes on Mondays and Fridays at the new Cincinnati Ballet Center for Dance.
Dancing with Parkinson’s at the Wyoming Fine Arts Center
This dance class also was the avenue through which I became the Executive Director for Parkinson’s Wellness, a chapter of the APDA that was the predecessor to PSW. I served in that position 2012-2015, and met many wonderful folks dedicated to providing resources for people with Parkinson’s and their loved ones. I am so thankful to be able continue to work with PSW today as the webmaster and newsletter editor, a position that allows me to stay connected to this community while granting more flexibility for my schedule as a freelance actor/dancer/teacher.
The author, her dad, and brother at her father’s retirement party.
I also feel tremendous gratitude for the resources I have awareness of due to my time working in this field. My dad had been taking PD-specific exercise classes in addition to my PD dance class for a few years before he and my mom moved to North Carolina and COVID hit. When I last saw him before the pandemic, Dad was healthier than he had been in years.
Fast-forward to the end of quarantine when I was able to visit with my parents: my dad was having hallucinations, hadn’t been able to get anyone in his new city to adjust his medication in over 18 months, and was experiencing extreme periods of dyskinesias and bradykinesias with practically no real “on” time. He had lost more weight and muscle tone than I could even process and was falling every day. He wasn’t able to even roll over in his sleep. I was lucky to know who to call to help figure out our next steps to get him back on a more positive trajectory when things were feeling very bleak.
Things are still very much up in the air, but we are at least moving in the right direction again. Dad’s medication has been updated and he is settling into a new routine with in-home caregivers and PT. He is likely going to be transitioning into assisted living in Cincinnati for the next chapter of life and I am looking forward to being able to see him more often again. Maybe, we will even be able to dance together again soon.