"Leave My Parkinson’s Disease at Home" was the mantra that I told myself when going on vacation with my husband, Tom. We traveled to attend the Port Townsend (Washington) Film Festival (PTFF) in September of 2016 and visited friends, Gayle and Bill. It’s our annual ritual, and we have attended about eight of these film festivals in the last decade. We love trotting off to Washington state every September and enjoy catching up with Gayle and Bill and appreciate the cool autumn weather and the fall colors after a long, hot summer.
Bill made a vegetable stew that we shared for the weekend, and we also enjoyed some delicious meals at the restaurants in town. We stayed up late to chat and analyze the films, drink wine and eat our favorite rich and buttery ice cream, Tillamook’s Caramel Butter Pecan. We typically watched about seven films in two and a half days at the film festivals.
It was inevitable that I was unable to hide the sneaky progression of my condition from Gayle and Bill. Visiting them once a year, they were able to witness my escalating PD symptoms first hand.
Among the most troubling and embarrassing symptoms during this trip were my episodes of dyskinesia, when my right leg flailed and made involuntary muscle movements similar to those of Michael J. Fox. These episodes arrived unannounced and each lasted from 15 minutes to 3 hours. Also, my right hand tremor came uninvited, and it acted like the guest of honor. My right hand tremor competed with my right leg dyskinesia for attention. The competition was a tie—my dyskinesia and tremor were equally painful.
My immediate problem at the film festival was finding a seat that could accommodate my flailing leg and me and that I would need a seat where no one was sitting on my right because it was likely that my right leg would move. Once most people understood what I needed, they readily responded by providing the requested seating.
Lessons learned: There is no way for you to take a vacation from PD or leave it at home. It will be with you until you die. PD is needy and demanding. I am hoping that I can learn how to peacefully coexist with her.