VERO BEACH — Bev Huber, a barber at Orchid Island Barber Shop on A1A, starred in a short film a few days ago that showed her cutting hair. But it wasn’t a demo for hair stylists. Instead, it was a medical documentary about the miracle that is her life today.
In 1998, Huber, now 61, was diagnosed with Parkinson’s disease and essential tremor.
Over the next few years, she became increasingly debilitated. A barber for decades, she had to give up her work, along with driving and the smallest activities of everyday life.
She couldn’t get a cup to her lips without spilling the contents. She couldn’t cut meat and could barely get a fork in her mouth. She couldn’t even sit in a chair if it didn’t have arms to hold her in.
A single mother, Huber depended on her elementary-school-aged daughter to help her eat, dress and walk. Her parents ran errands for her, as she became more and more helpless. More dependent.
“And increasingly depressed because of it,” she says.
Then, she heard about a surgery that might give her back her life. It is called deep brain stimulation surgery. The FDA approved it in 1998, the same year she was diagnosed.
Two years later, Huber went to Miami to have it — making her among the very first patients in Florida to do so.
“Nothing was going to dissuade me,” she said. “I had to try to get my life back.” Parkinson’s disease and essential tremor are caused by a misfiring in the brain.
The thalamus, the relay center in the brain, quits pumping out the necessary dose of dopamine, which keeps muscle movement balanced and smooth.
Often the movement malfunction — which develops on one side then the other — can be controlled by doses of synthetic dopamine. But as time passes, the medicine can become less effective, and patients can also have serious side effects.
The National Parkinson Foundation estimates that 1 million people in the US have the disease, and 100,000 have had deep brain stimulation surgery.
Of these, if the patient was screened properly, foundation statistics show that 90,000 of the surgeries were “positive,” though the level of success varies.
For the brain surgery to insert the electronic probe, Bev Huber was sedated but not knocked out because she had to answer questions and complete certain tasks to make sure the wire was placed exactly where it needed to be.
When the neurosurgeon drilled through her skull, Huber’s teeth rattled, but she didn’t feel pain. To get the probe in the precise location, a minute tube for channeling was inserted in her brain with the help of a global positioning system and a computer tracking system.
She was asked if she felt any tingling and was asked to follow an assistant’s finger with her eyes and touch her thumb to her finger once the probe was in place.
She spent a night in intensive care and went home a few days later.
Two weeks later, the neurosurgeon placed a small battery under her clavicle.
Then, he connected a very slim wire to the probe in her head and threaded it beneath her skin behind her ear, past her neck to the battery in her clavicle.
With a remote control, a specialist calibrated the battery so that the electronic probe in her brain sent a charge to her basil ganglia to stop her debilitating tremors.
A nurse handed her a teacup on a saucer. She took it in her right hand and it was completely still.
“It was the most euphoric moment of my life,” she says, her eyes filling with tears. “I was too overcome to speak.”
Soon after, she went back to being a barber, driving, dressing, feeding herself and reversing roles with her daughter, who had so patiently cared for her.
And, she fell in love and married.
“I met my husband when I was still bald from brain surgery so that tells you about his values,” she says.
Ten years later, she had a second battery inserted to control a tremor on her left side. That, too, was successful.
“I have such great quality of life,” she says.
A few days ago, a nurse from Medtronic, the maker of the implants, arrived at the barber shop as videographers stood by to record the difference the deep brain stimulation surgery has made in Huber’s life.
She is frequently asked to give talks about it around the state — to doctors, nurses, people with Parkinson’s disease and those with tremors — and wanted a DVD to show her audiences, as did the Medtronic nurse.
The plan was to show Huber cutting a client’s hair first. Then, the nurse would deactivate the battery for the probe stimulator that controls her right side to show what she would be like without the electric stimulus. Then, the probe would be reactivated and Huber would complete the haircut.
Ever so deftly, she clipped away with her right hand, trimming around the ears and the nape of the neck with sharp scissors.
Then, she sat in a barber chair because she feared she might fall down from shaking when the probe was deactivated. The nurse, using a remote control, turned off the battery under Huber’s clavicle that controls her right side.
Immediately, Huber’s right hand and arm began gyrating and her body squirmed in the chair.
Tears rolled down her face.
A minute or two later, the nurse turned the battery back on and Huber’s tremors stopped.
She returned to her client and finished the haircut by trimming his eyebrows.
“When I’m turned off, it’s so humbling because I forget I’m crippled,” she said. “It takes me to a place that is no longer my life.”
On a shelf in the barbershop, she keeps brochures about the surgery and a DVD of people who have had it to hand out to customers who are interested.
She’ll put the short film made about her with the packet.
Last week, Michael J. Fox did a CNN interview about his Parkinson’s disease.
Despite being on medication, he still has some tremors and writhing. But because he had most of his thalamus destroyed in the 1990s (during a thalamotomy) in an attempt to control the tremors, he has not been a candidate for deep brain stimulation surgery.
Still, when the interviewer asked him what advice he’d give someone who has just been diagnosed with Parkinson’s disease, he said, “Be open to every possibility.”
A few days ago, a Vero Beach 32963 reporter asked Dr. Michael S. Oku, the medical director for the National Parkinson Foundation, if recent medical advancements could mean a person who has had a thalamotomy like Fox could have successful deep brain stimulation surgery and stop their symptoms.
“It’s possible,” said Oku.
