Parkinson’s disease isn’t curable, but surgery has
provided a miraculous turnaround for a musician.
Bruce Gilbert is trying to relax before his show. His nerves are tense, “tight” is how he describes it, never a good thing for a keyboard player.
The singer-songwriter lies down. He has about an hour before he goes on, and luckily there’s a sofa in a corner of Heron House, a small performance center off the lake in Mountain Park.
Performing is nothing new. Bruce began playing music at age 6. By the time he was 16, he was playing clubs in Southern California. He moved to Atlanta 10 years ago and gained a following with his elegant love songs and cool jazzy melodies.
In 2005 he was diagnosed with Parkinson’s disease, a progressive disorder that degenerates the nervous system. It causes muscle stiffness and involuntary movement. His struggle to continue performing while battling the disease was chronicled in a Personal Journey in 2014.
Tonight, though, is his first big solo gig since the brain surgery.
Six months ago, Bruce’s disease reached a point where people wondered whether each performance might be his last.
The 66-year-old still could cast a spell with music, performing at coffee houses and small listening venues like Heron House.
But creating that magic was becoming increasingly difficult. He had to follow a precise schedule of medications, rest and meals to ensure he could last an entire show. Even so, his nerves would sometimes “go haywire” and he’d have to bow out.
“He would be jerking around,” said Cyndi Craven, a folk guitarist who’s performed with Bruce for years. “He practically couldn’t play.”
Ten years of Parkinson’s had taken its toll. He’d grown more dependent on his wife, Alexandra, to get through the day.
Lex, as everyone calls her, had to help him step in and out of the tub in the bathroom, where they had handrails installed. She picked up the things that flew out of his hands, and helped him up after his falls.
When Bruce put on his shirt in the morning, she buttoned the collars and cuffs. Tying his shoes was time-consuming, so Lex bought him a pair of elastic shoe laces that clamp together.
On bad days, even chewing food was a problem. “I would bite the crap out of my mouth,” he said. “I could feel things slipping away — my hands slipping away, my legs, my voice.”
Lex noticed his handwriting became smaller and smaller as the muscles in his hands tightened up.
Years of fighting the spasms had beaten up his body. He had to undergo surgery to fuse bones in his lower back and block nerves in his neck. He sometimes needed a walker.
Watching him struggle to perform was becoming difficult for his friends and fans.
Bruce had exhausted his pharmaceutical options, trying new medications or switching around existing ones.
But there was one option they hadn’t explored, a surgical one. His neurologist, Dr. Stewart Factor, told Bruce he was a good candidate for Deep Brain Stimulation (DBS) surgery.
Factor didn’t downplay the risks, including stroke and infection. The chances of such problems were slight, but there.
Bruce pondered his future without surgery. Parkinson’s doesn’t kill. People die with Parkinson’s, not from it. The physical symptoms of shaking, writhing and swaying get increasingly worse. Some people die from a traumatic fall. Sometimes dementia sets in and immobility, and people die from associated conditions such as pneumonia.
Years ago, Bruce was undergoing surgery on his digestive tract when he inadvertently woke up during the procedure. He was still sedated, so he couldn’t move or speak, and he didn’t feel any pain. But the moment, he said, gripped him with “a fear and panic unlike anything I had ever felt.”
That experience made him fearful of surgery, even one that had the potential to significantly improve his life.
He spoke to a therapist about it. He reached out to people who had undergone the surgery. He scoured the Internet to learn more. He talked to friends and family.
What do you think I should do? he asked Louis Robinson, a fellow musician and friend who books acts for Heron House. If it goes wrong I might not be able to play. But I’m going downhill. Should I take the chance?
Robinson thought for a moment, then responded.
If it was me, I would take it.
Photo: While wife Lex looks on at their Atlanta home, Bruce holds onto a kitchen chair to stretch as his early morning dose of medications begins to kick in to counteract his Parkinson’s disease. Surgery has provided a reprieve for Bruce’s failing body and he is no longer as dependent on Lex for his daily care with the disease.
2 surgeries, 2 weeks
Bruce took it.
The day before his surgery last November, Bruce reflected on it in a journal entry, pondering the wires the doctor would insert into his brain.
Will those wires pass by memories of my son Zac and all that he has meant to me? Will they wave at my long dead father as they worm their way past my first birthday party? Or will the opening in my head allow an infection which could end up a nightmare beyond anything I can imagine?
The next day he walked into Emory University Hospital on emotional auto-pilot. All the decision-making was over. He didn’t allow himself a second thought.
DBS is nothing new. Introduced in 1987, the surgery has been used to treat chronic pain, obsessive compulsive disorder and essential tremor. It was approved for Parkinson’s disease in 2002, and researchers are testing it on people with Alzheimer’s disease.
Emory was among the first hospitals to do the procedure in the early 1990s. Its DBS team has been working together for years.
Bruce’s surgery employed a relatively new technology in which much of the procedure occurs while he is inside an extra-wide MRI machine. That allowed surgeon Dr. Jon T. Willie to better map Bruce’s brain and more accurately guide the wires to the target area. It also allowed Bruce to be asleep.
The target in Bruce’s head was his globus pallidus, near the center of the brain, the site responsible for his involuntary movements.
Once the MRI mapping was done, Willie drilled two holes about the size of dimes on the front of Bruce’s skull. Through each hole, he gingerly guided a wire with electrodes about 3 inches into Bruce’s brain.
Willie used two plastic caps to cover the holes in Bruce’s skull. He left a short length of wire coiled under the skin of his forehead, then sewed up the incisions.
Ten days later, Bruce was back in Emory undergoing the second part of the procedure. Willie implanted two devices (sometimes called brain pacemakers) about the size of stopwatches just under the skin below Bruce’s right and left collarbone.
The surgeon then ran the wires up behind Bruce’s head, below the skin, and attached them to the wires under his forehead.
Bruce did not go to the piano the next day and bang out Rachmaninoff. The settings on the transmitter had to be fine-tuned to send just the right amount of pulses to his brain. That required trial and error.
The first time Bruce sat down at the piano his hands fumbled over the keys. The transmitter was adjusted and he tried again. And again. This went on for weeks.
The healing came with other worries. First was the way he looked. The incisions on his head appeared, as his friend Jerry Brunner said, “like an ax murderer had a party on it.” Bruce worried about frightening children. He thought about buying a hairpiece.
Then his head started to itch where the wires coiled below his forehead. Some people who undergo DBS get infections from incessant scratching, which requires the whole apparatus to be removed.
Over time, Bruce felt a sense of steadiness coming on. He felt more stable when he walked. With each tuning of the transmitter, the shakes and jerks diminished.
Hooray ..... hooray, he wrote in his journal in early December. The changes are truly shocking. I played with other musicians for the first time this past Sunday, and every single person said that the movements were totally gone. ... It was so, so .... how do I say this? NORMAL.
Photo: Bruce plays a round of golf at Candler Park Golf Course on a day in late Feburary. “It was like watching another guy,” said Bob Bakert, who had watched Parkinson’s disease take a toll on his music buddy in recent years. “I couldn’t believe the way he was swinging.” Brant Sanderlinemail@example.com
A full partner
One day in December, Bruce invited music buddy Bob Bakert to play a few holes of golf. They met at the little nine-hole course in Atlanta’s Candler Park. It was cold and the grass was more yellow than green. Privately, Bakert wondered if Bruce would be able to walk the mile-long course, let alone play it.
At the first hole, Bruce stepped up to the tee and sent the ball sailing.
“It was like watching another guy,” Bakert said.” I couldn’t believe the way he was swinging.”
Can you believe it? Bruce said at one point during the game. We’re out here playing golf.
At home, the transformation has been dramatic.
“Virtually everything is easier,” Lex said.
The couple is cooking together again. They’re socializing more. They recently invited family members over and prepared a dinner of pork chops with rosemary, potatoes and green beans.
For a wife, the change has been profound.
“It means I have my full partner for much longer, instead of a limited partner,” she said.
For Bruce it feels, he said, like “heaven.”
It’s not heaven all the time, though. Mornings, especially, are still rough.
One recent morning, he awoke at 5:45 a.m. It took two attempts for him to rise from the pillow and sit up. He made his way toward the kitchen with stiff, little shuffles of his feet, picking up his plastic box of pills along the way.
Over the course of the day, Bruce takes 28 pills. The first dose is nine. He writes down the time on a piece of paper, so he knows exactly when to take the next dose. His day is measured out in three-hour intervals of taking pills. If he fails to take a dose on time, he starts to run down, his movements slowing and stiffening.
By 6:25 a.m. the meds had kicked in and the disease’s symptoms loosened their grip on him. His hand didn’t shake when he poured a cup of coffee. He felt more in control than he had in years.
“It’s not just the absence of feeling bad,” he said. “I’m smoothed out.”
Seeing Bruce 2.0
Word began to get around.
You have to see Bruce Gilbert. He looks great. No tremors when he plays piano. No shakes when he sings. You have to see him.
Forty friends and fans have shown up to see him perform at the Heron House. There’s a joyful pre-show buzz. It feels like a coming-out party, welcoming Bruce back to good health, back to the performing world.
Bruce had spent the previous week telling people this show would be no different from any other, but it’s clear he hasn’t convinced himself of that.
Earlier that morning, his nerves had acted up. He had inadvertently sent out an erroneous Facebook message saying the show was canceled. The stress went straight to his symptoms. He started shaking and couldn’t stand up. He and Lex spent the day calling people to tell them the show was still on.
Nik Roberts walks in with a group of people who have Parkinson’s. Roberts and Bruce are both involved with a local social group for people with Parkinson’s. They meet for coffee, potluck dinners and informational sessions. For the group, Bruce has become a hero.
Introducing Bruce, Robinson doesn’t gush. He simply says, “We’re all looking forward to seeing Bruce 2.0.”
Bruce begins with a song about an afternoon spent under a tree that “reaches halfway to the moon.” Apart from his hands dancing over the keys, he shows little movement but the tapping of his right foot on the keyboard pedal. He sings the mellow lyric into a stand-up microphone. Before the surgery, he had to wear a headset mic, because his erratic movements would bash his mouth against the standing mic.
Still, some songs lack the old smoothness. He misses a beat and a lyric here and there.
After the intermission, he loosens up, and his songs show their stuff. Lex moves her seat to the first row, right in front of him. He sings a song for her.
Alexandra, a special gift that only she can be
Standing peacefully beneath a willow tree
People sway in their seats. The applause grows longer after each song. A few tunes bring tears.
The show ends with everyone on their feet clapping, rooting on a man living some great days, with better days ahead.
After the show, Bruce critiques himself. He was a little nervous, but it worked out. He notes that his voice is thinner since the surgery. He doesn’t know why.
He hopes a trip to the doctor and some tweaks to the transmitter will fix that.
A limited future
Bruce knows DBS is not a cure for Parkinson’s disease. It is a temporary fix for the physical symptoms. It doesn’t stop, or even slow, the progression of the disease, with its memory loss, mood swings and potential for dementia.
It’s just a matter of time before the symptoms catch up to him again, when the faulty electrical impulses in his brain become too strong for even the pacemaker to control.
“It’s almost like I’m in a rented body,” Bruce said. “Or a fairy tale body, and I’ll wake up and it’ll be gone.”
Still, this reprieve could last five or 10 years, the doctors tell him, enough to feel like a new lease on life. Bruce and Lex plan to take full advantage of it.
The Gilberts are planning to travel, something too challenging for Bruce to navigate before the surgery. They are planning trips to see friends in California next month and Massachusetts in the summer. They head to Mexico in the fall.
The difficult conversations about things like assisted living facilities seem “further away, less imminent,” Lex said. “Our outlook is really different. It’s hopeful.”
The pain that had kept Bruce from playing music as often as he liked is virtually gone. He’s spending more time in his home studio. The music is flowing again.
“I’m writing like crazy,” he said.
ABOUT THE STORY
I met Bruce Gilbert about seven years ago, when I was playing open mic nights at the former Ragamuffin Music Hall in Roswell. Bruce was a respected singer-songwriter, but he faced increasing challenges playing music and other activities due to Parkinson’s disease. I wrote that story in 2014. Recently, I heard about his incredible recovery since undergoing brain surgery. People kept saying, “You have to see him.” I did and knew I had to write another chapter in his amazing journey. Thanks so much to Bruce for his honesty, courage and openness. To hear Bruce Gilbert’s music, go to www.brucegilbertmusic.com.
ABOUT THE REPORTER
Craig Schneider joined The Atlanta Journal-Constitution in 1997. He has exposed problems with the state child protection system, personal care homes, trucking regulations and credit-card fraud. He has also done stories on his obsession with the musical “Les Miserables” and his sad attempt to meet Bruce Springsteen.
ABOUT THE PHOTOGRAPHER
Curtis Compton joined the AJC as a photo editor in 1993 before returning to the field as a staff photographer. Previously he worked for the Gwinnett Daily News, United Press International and the Marietta Daily Journal. He has a bachelor’s degree from the University of Georgia and won a World Hunger Award for his coverage of the famine in Sudan.