Since my Parkinson’s diagnosis, dancing really seemed a thing of the past. The thought of parading my dyskinetic and statuesque dance moves in public was confidence-sapping, to say the least. But this summer, on a trip to Disney World, I decided it was time to change that.
At the top of our bucket list was a Disney trip. We decided this summer was an opportune time to take the family before the kids become too old for Mickey and his Magic Kingdom and while my current reasonable level of fitness holds.
In the weeks leading up to the holiday, I had been quite up and down. My “off” periods continued to be unpredictable and frustrating. Some days I felt great, able to cycle 50 miles and feel really strong and coordinated. Other days, I could struggle to walk through a doorway, frequently doing my ‘Ali’ shuffle every 10 yards. So, I was concerned how I would deal with the long haul travel and the days spent walking around the Disney Parks for hours on end. Surprisingly, while I had some off times, I was generally able to keep things together.
In most of the Disney Parks, they have an outside stage and dance floor where kids can meet Mickey and friends, and around 6 p.m., a DJ plays music. One particular late afternoon, we were waiting for some of our group to queue for one of the rollercoasters, and I was feeling quite “parky.” When I feel off in public, I don’t like standing around. My whole body starts to feel stiff, and I get quite fixed to the spot. As I walked in circles to keep moving, I came across the DJ playing some catchy tunes. Unusually, I found myself walking to the beat and feeling the urge to move with the music.
It occurred to me that apart from my family, the other 100,000 people in the park had no idea who I was, and I would never see them again. Spurred on by this anonymity but still feeling a little nervous, I asked Cathy to come and join me on the dance floor. She was a little dubious as it was only 6 p.m. and there were lots of onlookers, but luckily, Taylor Swift came on, and Cathy and I shook my Parkinson’s off!
Fuelled by Tay-Tay, we went or it and really let it all hang out, not caring if we made fools of ourselves. It felt great. I really couldn’t have cared less what I looked like. The music was pumping, the sun was shining, and my “parkiness” was subsiding as my meds kicked in. Most of all, it was great sharing a laugh with Cathy.
Having had such a great time dancing off my ‘off,’ later in the holiday, I tried it again in my in-laws’ garage as part of my workout. With the garage door open due to the heat, I rocked out with Stereophonics, AC/DC, The Foo Fighters, Elvis Costello, The Fratellis, and my latest addiction, Blondie. It was like that scene from Billy Elliot where he dances his frustrations out to Marc Bolan and T-Rex. I was dancing my own frustrations out and feeling the joy of my body being responsive for a change.
This seems to be my new strategy for getting my body going. On our way home via Atlanta, I started to feel stiff and Parkinsonian at the gate during our 6-hour layover. There weren’t many people around, so I dug my headphones out, whipped on my playlist, and proceeded to recreate that Hugh Grant scene from Love Actually on Gate E17’s concourse for an hour. How not giving a damn what you look like—feeling the fear and doing it anyway—is so uplifting! I was shadow boxing to AC/DC, moshing to Blondie, and pogoing with the Foos up and down the corridor. I was even waving to the Delta pilots and passengers as they taxied past the window. I’m surprised I made it home without getting tasered by the TSA!
By the end of the session, I felt so much better. It was probably a lot to do with my meds kicking in, but I’m sure many of my fellow passengers noticed my Kaiser Soace transformation (thanks to Two Parkies in a Pod for that perfect description of what it’s like when your meds kick in) when I walked back to my seat.
It’s ironic that something that once caused me so much anxiety and eroded away at my self-confidence is now making me feel so positive.
So, the next time you are feeling resigned to a life perpetually wading through treacle, put on your favourite upbeat musical combo and bop ’til you drop. You’ll feel like Billy Elliot, guaranteed.
Balls to Parkinson’s 