Parkinson’s disease is a thief. It robbed me of the ability to turn over in bed. I can no longer take a long walk. Opening a plastic bag or turning a newspaper page has become a challenge. We PWPs (Persons With Parkinson’s) become familiar with loss.
In my case, though, Parkinson’s has also granted one of my keenest desires. After decades of hopelessly wishing on birthday candles and turkey collarbones that I could carry a tune, suddenly I can unashamedly join in family singalongs. I can sing.
That’s thanks to fellow PWP Judy Dodge. A retired church music director and organist, she arranged with the Parkinson Foundation of the National Capital Area to lead a weekly PWP choir class. I would never have signed up, but she persuaded me that the voice exercises would be good for my stiffening vocal cords, and my tunelessness would not be a drag on the group. While some had signed up simply for a chance to do choral singing, the class was designed to be therapeutic as well, to counterbalance Parkinson’s softening our voices and flattening our tone, to strengthen our lungs and our enunciation. Mine wasn’t the worst among the hesitant and scratchy voices, and there were some talented singers to drown us out. But even they needed to practice projecting their voices and keeping their muscles supple.
Every Wedneday afternoon for about a year now, a dozen or more PWPs gather in a Chevy Chase church hall where the heating system breathes more loudly than we do. We warm up our throats by humming and singing scales. We try to breathe slowly and project strongly. We massage our cheeks, stretch out our tongues and read poetry. We belt out folk songs, gospel and show tunes. It isn’t always tuneful, but it is fun.
One day that fun turned into full-blown joy for me as I listened to my own voice among the group and realized that I was getting every note right. It’s not that PD improves singing ability, but for me, something had connected in my head, and I could stay on tune. For once, thanks to Parkinson’s, I could do more rather than less.
I’d taken a long route to this epiphany.
Gradually in the past decade, as Parkinson’s has narrowed my life, singing and other efforts to manage PD have expanded it.
I’ve never been a willing exerciser, so I’ve had mixed feelings as clinical trials revealed the great benefits of exercise in Parkinson’s treatment. It can mean the difference between movement and rigidity. It can keep us mobile and reduce our pain. So in the past decade I have dutifully if reluctantly explored more than a dozen movement classes, from tai chi to water aerobics.
At first I found excuses to drop every one. Swimming was too late in the day; I couldn’t gear up for 7 p.m. activity. Most classes required too much standing, or floor exercises. Fortunately, I learned that the Washington chapter of the Parkinson Foundation sponsored free exercise classes, 88 of them a month, including a dance class not far from home.
I edged into exercising with Lucy Bowen McCauley, who teaches modern ballet moves adapted to the balance and stiffness problems that result from Parkinson’s. I had postponed joining in for a year, until my daughter practically dragged me there; I didn’t relish the image of an overweight retiree who couldn’t touch her toes or stand unaided for 10 minutes trying to imitate a ballerina.
The class turned out to be far less threatening than I’d anticipated. Among our corps of young, old and older, there were a few who could barely stand (we’re seated for most of the class time), several men clearly unfamiliar with pointing their toes or moving their arms in graceful curves, and almost nobody who would be mistaken for a ballet student. Yet Lucy made us all feel competent and energetic. She gave us a good — and safe — workout, and she made it fun. After a couple of classes I was so impressed that I persuaded several reluctant men from my support group to try it — and they’ve stayed.
One exercise class a week wasn’t enough to keep me moving. I’d tried every non-Parkinson’s class I could find near my home and concluded that the teachers might be excellent but adapting their programs to a Parkinson’s body was a struggle. So my next venture was to join the stretching-aerobics-etc. classes run by Kim Brooks for the foundation chapter in several locations around town.
Kim and Lucy not only understood what we couldn’t do; they knew how to challenge us without endangering us. Kim devised finger exercises to maintain brainpower, laughing exercises to enhance our facial expression, memory exercises and tongue exercises, as well as the usual stretches and aerobic activities. She, like Lucy, has that charismatic energy that keeps us trying even though our capacities are declining as we toil to maintain them.
Each of my three classes — choir, dance and exercise — has subtly knit its participants into a group, a mutually supportive group. In Lucy’s dance class, we have even waltzed in celebration of the wedding of two members.
Eventually several classmates convinced me to try Jon Berns’s High Aerobics class in Bethesda. It’s a challenging routine of aerobics and weight training, with lots of equipment to climb and swing and throw. Unlike my other classes, it includes no music and not much laughter, just the satisfaction of having challenged my body, and a finale that became the exercise highlight of my week. This involved Jon and his assistant holding me under the arms while I ran as fast as I could across the room. Safe from falling, I could speed, I could race, I could fly! I had never expected to feel the wind in my hair again. It was my weekly moment of physical freedom.
Logistics intervened, however. The class location was beyond my driving comfort, so eventually I stopped going.
Down to three classes a week, I’d like to report that I enthusiastically attend every one, but the most I can say is that I’m always glad to be there once I arrive. Even now, reluctance is habitual to me and I almost need to be pushed out the door. I credit my steady attendance to having found a buddy who picks me up on her way to classes. We keep each other on schedule.
We don’t exercise to grow stronger or faster; we do it to try to hold our own, to keep moving. Singing is the exception. For me it’s been a tale of progress. Parkinson’s didn’t make it possible for me to carry a tune. It created a situation in which I could practice and observe and gradually learn that I could carry a tune.
The ability to sing. The opportunity to fly. The company of a new best buddy. Those are accomplishments of my Parkinson’s classes. So what if I can’t touch my toes? It’s enough to make me believe in silver linings.
Richman received a Parkinson’s diagnosis in 1999. She was the Post’s restaurant critic from 1976 to 2000.