Coast Guard museum curator back at work after two brain surgeries
New London — Friends and colleagues have had to remind Jen Gaudio that she had two brain surgeries over the course of five months.
But the 44-year-old curator of the museum at the Coast Guard Academy, who has early onset Parkinson's disease, is a self-proclaimed workaholic.
In May 2015, she had the first of two deep brain stimulation surgeries at Yale-New Haven Hospital to insert a special wire into her brain. She underwent the second surgery last October.
The goal of the surgery was to help relieve the symptoms she suffers from such as tremors and dyskinesia or constant movement and to decrease the medication she has to take. There is currently no cure for the disease.
Gaudio can adjust the stimulation level by using a remote control. The wires in her brain are powered by batteries, which were implanted on either side of Gaudio's chest.
The academy and Coast Guard community have continued to support Gaudio, she said. Before she underwent the first surgery, academy members held a head-shaving event for Gaudio. Some helped redo Gaudio's bathroom. A public works employee came to check on her and fix her wheelchair. She's received more than 500 hours of donated leave time, which allowed her to take time off to recover from the surgeries and from a recent setback that sent her back to the hospital.
Since the surgeries, many at the academy and the larger Coast Guard have reached out to see how she's doing.
"It was almost impossible to think that with all that support that it would go badly, but I never expected it to go as well as it did," Gaudio said during a recent interview in her New London home.
Around Thanksgiving, clear fluid later determined to be cerebral spinal fluid began dripping from a pinhole-sized incision on Gaudio's head, she said. She went to a doctor with the Women's Care Medical Center in Groton who told her to immediately go to the hospital. The doctor's quick catch, Gaudio said, enabled her to get help before the incision got infected. If that had happened, she said, the wire in her brain would've had to be removed and she would've had to wait a year for it to be reinserted.
The incident, which Gaudio joked is "a real conversation starter," set her back a couple of weeks because she was "just exhausted." Afterward, she needed a second call to go out requesting donated leave hours. People donated weeks. Four people donated 40 hours, she said.
"One of professors was like, do you need more time because I'll come in and work and I'll give you the hours from that," Gaudio said.
She penned a letter to members of the Coast Guard community thanking them.
"I would've never known that many people cared about me short of witnessing my own funeral," she said.
Gaudio considers the surgeries a success.
"It's almost like a new lease on life," she said.
The dyskinesia is gone though she still occasionally gets tremors. She's gone from taking six pills four times a day to three pills three times a day. Soon, she expects to be down to two pills three times a day. She's no longer wheelchair-bound and can drive short distances like the four miles from her home to the Coast Guard Academy. She feels she's regained some independence.
"I have to remember that I'm not cured, you know, I'm not completely out of the woods," she said. But she said she feels more hopeful than she's had in a while.
Being in a wheelchair for eight months caused Gaudio to lose strength, she said. She starts physical therapy Monday to help strengthen her body and to help with some back pain.
"I know it will take me a while to get my energy reserves back, but I'm able to walk," she said.
Gaudio has maintained her humor. After her first surgery, doctors put her into a halo, which she described as looking like Darth Vader's mask. Her surgery happened to fall on May 4, considered by many fans as Star Wars Day.
"So I asked the resident if I should start breathing like Darth Vader. He's like, no they'll think you're having respiratory arrest," she recalled.
Gaudio admits she came back to work a little too soon after the first surgery because she was "so bored" at home.
"I've knitted like 16 scarves," she said. "I've made a whole bunch of jewelry for people. I got crafty. The dexterity in my hands is much improved."
She joked that she was driving all of her housemates nuts and that she had to put an allowance setting on her iTunes account so she didn't buy too many movies.
After the first surgery in early May, she began working full-time in mid-July up until October, when she had the second surgery. She's now been working about six hours a day, alternating between working from her office and home.
"It hasn't been incredibly easy, but it could've gone much, much worse," she said.
Some people who also have Parkinson's have approached Gaudio, she said, and asked if she could share her experience, including a 40-year-old colleague of a friend who was diagnosed in May. She would like to start a local support group for early-onset Parkinson's, or a local chapter of The Bionic Brigade, a support group based in Colorado for those who have underwent the deep brain stimulation surgery.