Parkinson's in the Time of COVID
In the last few months, our lives have shifted in a way that we never anticipated; we have been restricted, and many of our in-person activities have been converted to online. When we do something as mundane as grocery shopping we need to plan, scheme, and find ways to get what we need without compromising ourselves. We have had to be very creative in keeping ourselves active and engaged to alleviate boredom due to the lack of options. Because our usual social outlets are not available to us, we have been trying to keep up a good face in order to fend off anxiety, depression and isolation. What keeps us going is that we know, at some point, there will be a light at the end of the tunnel and many aspects of our lives will return to some version of normal. Imagine now there is no going back, and that you are in this new normal forever. This is what it is like to have Parkinson’s.
Almost 9 years ago, I began to teach Dance for Parkinson’s, a technique developed by Mark Morris Dance Group in Brooklyn, NY. Since then, I have learned an enormous amount about the disease, and what can be done to help delay symptoms. Many people don’t realize that Parkinson’s is not a fatal disease, but rather a chronic condition which at this time, cannot be cured. The primary symptoms of Parkinson’s are resting tremor, lack of mobility, bradykinesia (very slow movement) and postural instability. Other symptoms may include the Parkinson’s mask (atrophy of facial muscles), festination (shuffling) and some cognitive impairment. Many also consider Parkinson’s a disease of old age, but it isn’t. I know several people who were diagnosed with Parkinson’s in their 30’s and 40’s (e.g., Michael J. Fox) and it’s common for people to live for decades with this disease. Unlike MS, it’s not considered an autoimmune disease….or is it? It’s enigmatic. The consensus for many years was that Parkinson’s is a neurodegenerative disease that affects the basal ganglia, which is the motor control system in the brain, and that in turn causes a malfunction of the dopamine receptors. Could it be environmental? The fact is, we don’t really know the cause, which makes Parkinson’s all the more puzzling and difficult to treat.
There are some things that we do know. There are medications that relieve symptoms. There is deep brain stimulation (DBS) for those who qualify; this technique implants an electronic device deep in the part of the brain responsible for movement and sends electrical signals which can relieve the dyskinesia and tremor that many people with Parkinson’s (PWP) experience. And then, there is movement. The key to managing Parkinson’s well, and keeping symptoms at bay, is never stop moving. When my students ask me what else they should do besides our dance class, I say, do it all, everything your body can handle….boxing, tai chi, chair yoga, walking, biking, swimming. The greater the variety of movement, the better conditioned the body can be to handle setbacks.
What I have learned through my trainings is that dance is about the possibilities of movement…what we CAN do as opposed to what we can’t. As an instructor, I look at the class as an artist, not a trainer. Yet there is a plethora of benefits, many of which directly affect the symptoms of Parkinson’s: improved flexibility, agility, mobility, stability, strength, balance. Dance also improves left brain function through integrating sequencing, patterns, rhythm, counting and right brain function by enhancing musicality, artistry and socialization. The socialization piece cannot be underestimated, because as the disease progresses, isolation tends to set in. Coming to a weekly class to see friends, move, dance, listen to fabulous music, talk and enjoy each other’s company is incredibly rewarding.
Before March, my Dance for PD classes at the Steinberg Wellness Center at Emerson Hospital were rolling along. Every week, we had between 15 and 22 people in class, including caregivers. We received a donation to run free Dance for PD workshops that include live music or performers for the Parkinson’s community. And then in March, programs screeched to a halt. It took me about 2 weeks of shock and, well, mourning to realize that it could be a long time before we gathered together as a group. I reluctantly explored the Zoom platform, and after a couple of months of tweaks, upgrades and acceptance for the imperfection of online class delivery, my class is again in a groove. I am grateful we can be together as a tribe.
I also feel with this online shift, we have somehow gotten closer. Like the stars on Hollywood Squares, my students get to see each other in gallery view and chat at the end of class about life. And the beauty of Zoom is that even when someone isn’t feeling well, they can show up and listen to music. And guess what? I know it may be hard to believe but we almost never discuss Parkinson’s. And other than the occasional comment about COVID-19, we rarely discuss that either. What do we discuss? Music, dance, culture, history, travel, food, movies, books, poetry, gratitude. I enjoy creating themes for my playlists such as all-Gershwin, Sounds of Summer, Singer Songwriters, and sharing music history or even theory with my students, creating a multi-dimensional experience for the class.
This is what I have learned: in this supercharged, tense and divisive world we live in, a lot can be learned by letting creativity and connection determine the way you live life. So even with COVID, and the contracted world in which we live, my Parkinson’s students, my friends, my tribe, have figured out how to live outside the boundaries of the disease, and experience joy with each other and through movement.
