Beyond the pale of Parkinson’s Disease
I met Ben Rivers in 2011. Though only 41 years old, he'd had Parkinson’s disease for 10 years. At that point in time, most any kind of movement was hard.
An estimated 50,000 to 60,000 Americans a year are diagnosed with Parkinson’s disease. It is a condition which can be a greatly debilitating. Neurons in the brain gradually die off, taking with them a brain chemical called dopamine that’s critical for movement.
When I first met him, Rivers could not sit while eating, because he had better agility standing on his feet; a side effect from medication that made his body twitch. He had a hard time speaking. And even though it had been one of his favorite pastimes, he couldn’t play the piano for very long.
“I’m turning 42 next month,” he told me, “and that’s given me a feeling of the depth of this, the permanence of it.”
Signs of Parkinson’s disease don’t usually appear until around age 60. Occasionally, patients develop a young onset form. The actor Michael J. Fox, for example, was only 29 when he was diagnosed. Rivers was 31 when his first symptoms showed up.
A new world
It was spring of 2001 and he was about to take a long trip to Asia. He was looking for adventure and to test himself without the support of family or friends. Just before leaving, his left hand started shaking. His shoulders locked up. Despite the signs that something was wrong, he got on a plane. In Thailand, over the next several months, his condition grew worse. By December, both hands were shaking. His face froze into one expression. His feet shuffled as he walked.
A doctor diagnosed Parkinson’s disease, but Rivers did not believe it. He now admits that maybe he should have gone home. But he did not. He was determined to make it on his own.
His mom, Yahdi Beckwitt, says Ben always did everything with maximal effort.
“Like when he trained to run. He didn’t train to run the marathon. He trained to run for the 100-mile run,” she says. “He was exhilarated, but he would overdo it, too. And he hurt his knees because he didn’t have all the knowledge about how to train that way.”
In Thailand, Rivers would wake in the mornings, his body stiff. Just to move, he would apply all that intensity he had once used in extreme sports. It took a lot of effort.
First, he would wiggle his hands to initiate movement and then force his hands to make contact with a clap. After that, he would start to kick and flail his legs. Finally, he would work his way out of bed and into a standing position to slip on his sandals.
He would force his right hand up and close his fingers around his bag before heading downstairs to begin the process of shaving.
The labor involved with moving, coupled with the Thai culture he was immersed in, forced Rivers to slow down.
Through most of his 20s, he had meditated a lot, attending 10-day silent retreats and often waking before dawn to sit for an hour or two. In Thailand, he says, his affliction awakened him spiritually. He became a keen observer of himself and the world around him.
“I really enjoyed the sensations,” says Rivers. “The cultural things in the markets, the foods, the smells. Sensations of the colors. An incredible feeling of aliveness.”
But physically, he wasn’t getting better. In 2005, he finally admitted that he needed medical help. He came home. By then, his whole body had stiffened. He mumbled while talking, and he could barely use his hands.
“He came back, as Ben always has, with ideas,” says Beckwitt.
Rivers wanted to find a cure. He and his mom consulted doctors and alternative healers.
“It was an Alice in Wonderland kind of thing,” says Beckwitt. “One healing modality after another. One thing leading to another, but nothing really going all the way.”
For Ben, the finality of his condition set in. Unable to care for himself, he hired help through a state program called in home supportive services. One of his caregivers was Robert Hennis.
“When he first hired me for the job, he was catatonic. I mean, more like physically frozen,” Hennis says.
It was 2010. Hennis said Rivers could not sit down or get up on his own. He also couldn’t talk.
“His face was completely frozen, no expression,” Hennis says. “He was basically a human statue that blinked at you. He literally communicated by blinking.”
This is the normal progression of Parkinson’s without medication. But Rivers was still in denial that he had the disease. His caregivers finally forced the issue.
“We were like, ‘You really just have to bite the bullet and go,’” Hennis says. “I begged him to do it. I was like, ‘You got to do this.’ And finally he saw, ‘Everything else I’ve tried is not working. Why not try this?’”
He took Sinemet, the standard drug for Parkinson’s. It helps delivers dopamine, a vital brain chemical, which is low in Parkinson’s patients.
“And it was like that,” says Hennis. “It was that fast, the changes in him, just taking the dopamine.”
Living with Parkinson’s
This was 2011, 10 years after his first symptoms had appeared, and when I first met him. Rivers could now get out of bed, walk to the farmers’ market, go to a movie if he liked. But looking at him, you knew something was terribly wrong. One time, we ran into each other at a café. This man with a frozen expression on top of a pole-thin frame rocked back and forth as he tried to hold a normal conversation. To steady himself, he pushed hard against a table. When he walked away, the waitress made the sign of a cross.
As bad as it was, Ben felt the medication was giving him a second chance.
“When I’m wracked by the profound limitations of this shaking body and watch a day slip by, and see how much I could get done, it really weighs on me more,” Rivers says. “And because there’s so much more possibility here, there’s that much more drive and urgency to get my music done, to get my writing done, to build social connections, to come out of isolation, to travel, to expand, to grow, to get beyond, to have a life, a rich, meaningful life.”
In the summer of 2012, Ben began auditing music classes at UC Berkeley. In the fall, he composed a piece that students performed as part of a small concert. Over the next year, he audited music classes almost full time. He found a doctor who helped with digestive issues, and he worked with caregivers on medication doses.
His condition has improved remarkably. He still shakes – that is a side effect from the medication. His fingers freeze up sometimes. But overall, he looks and feels much better. He even wrote a song about Parkinson’s that pokes fun at the condition:
Well, I’m shaking with Parkinson’s Disease.
My limbs flutter like the leaves in the trees.
Random and restless as the wind on the seas.
I’m shaking to the rhythm of Parkinson’s disease.
Yeah, well this is no idyllic situation.
But I won’t succumb to frustration.
I’ll command my life with liberation…
The Parkinson’s is not gone. The disease will progress; and eventually, the medications won’t work as well. But Ben is hopeful he has a few more decades, and by then, there could be a cure.
He is still commanding his life with liberation.
You can find out more about Ben Rivers and his music at his website.