"I felt like I didn't have Parkinson's for 90 minutes"
The headline is a direct quote from Jodi Cianci, a woman from Philadelphia who has been diagnosed for 12 years. She said that in our closing gratitude circle, following our workshop at the University of Penn on Friday, July 26th.
Jodi’s an amazing person, with an incredible husband, Chris, and a story you must read at their website, Shake it Off. The Cliff’s Notes version includes this: she doesn’t take any meds. She works out diligently and with high intensity. And to many who see her, she looks like she doesn’t even have Parkinson’s.
The truth is she does. And some days are better than others. There still is no cure and, therefore, there is progression. So it goes with PD. We know this.
When I first spoke with Jodi and Chris, I had to spend a fair amount of time sharing with them how improv could positively effect Parkinson’s. Chris is actually a fan of ComedySportz, but he wasn’t clear on the benefit between the two things. The great thing is, in improv terms, they said YES to the workshop, not only getting a room at the University of Penn for us to use, AND also to coming and playing with our group to feel the effects.
Another big win was having Marcela Pavon, a Research Specialist with the University of Pennsylvania play with us. This has been a key insight so far - it’s incredibly important that we not only have the people with Parkinson’s feel the positive effects, but care partners, loved ones, wellness and medical providers, too. By working together, effective communication will increase. The story of meeting with a neurologist and not being heard is fairly common. Just as is the story of a doctor or wellness specialist meeting with a PD patient and not having him comply. How about the spouse who can’t get their partner with PD to speak up for himself? Or the spouse with PD who can’t get his partner without PD to understand what she needs.
All of these are common. There is no one party or even individual to blame. Blame, in fact, is often the surface level block that keeps us from getting what we want. Communication is a tricky thing for everyone. But working together, learning techniques by practice in a fun, safe and positive environment can go a long way to helping. That’s what we’re building - and I look forward to sharing it with you.