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    Sunday, May 12, 2024

    Museum curator has Coast Guard Academy behind her as she battles Parkinson's disease

    Jen Gaudio, curator of the Coast Guard Museum at the United States Coast Guard Academy, thanks her friends, family and supporters gathered at the Lee Rail Lounge, at the Officers Club at the academy in New London Friday, May 1, 2015 prior to having her head shaved for an upcoming surgery for early onset Parkinson's disease. (Tim Cook/The Day)
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    New London — On Thursday, Jen Gaudio made a routine, 30-minute visit to the Department of Motor Vehicles in Norwich.

    She needed to renew her driver's license, which expires on May 8 — her 44th birthday — and the handicap pass that hangs in her car. Gaudio, 43, curator at the Coast Guard Museum at the Coast Guard Academy, has early onset Parkinson's disease, and on May 4 will be undergoing deep brain stimulation surgery at Yale-New Haven Hospital.

    Gaudio wanted to renew her license and handicap pass before the surgery because she will need the license as ID at the hospital.

    "I was supposed to have the surgery in March and they postponed me until May, and I thought five weeks was too long and now I'm like I need another week," Gaudio said while waiting in line at the DMV. She has used a wheelchair since November.

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    On Friday afternoon, nearly 50 members of the academy community gathered in the basement lounge of the Officer's Club and circled around Gaudio as she sat in a wooden chair in front of a row of mirrors.

    For months, but particularly over the last couple of days, Gaudio has expressed her gratitude for the academy community that has made this disease, which she said can be very lonely, less so.

    "I think I needed you more than you needed me, and I am very grateful that you could share this experience with me because I would be far more frightened and concerned about what is going to happen to me than if I didn't have this community welcoming me into it," Gaudio told the crowd before getting her head shaved for the surgery.

    The academy community has stepped up to help Gaudio in simple but profound ways. A leave donation account was organized for her so that she would have enough leave time during her post-surgery recovery, and the current Officer Candidate School class has designated their community service time to supporting the museum. Some members of the academy community have helped redo Gaudio's bathroom. There are other examples, such as a public works employee "who's told me not to tell anyone he's being nice because he likes his curmudgeon status," Gaudio said.

    "He came in every once in a while during the winter and made sure that I got in OK. He and someone else came to fix my wheelchair. He checks up on me every once in a while. He wanted to rearrange my office," she said.

    From the showing Friday and the words spoken by academy members, it seems the feeling is mutual.

    "Man, your work ethic is unbelievable that, despite really tough days, you're still here, and I just can't tell you how commendable that is and how much we all appreciate you," said Capt. Anthony "Jack" Vogt, assistant superintendent.

    Lt. Shawn Simeral, an OCS instructor, shaved the first strip of Gaudio's head. Simeral and Gaudio became close after they arranged an interactive Coast Guard history class in the museum. 

    "She was excited to do it ... In fact, we had to reel her back, like we can't make all that happen," Simeral said afterwards.

    "It is the best reviewed class over the past two-and-a-half years that we have had here," he said. "A lot of people have said it's reignited their interest in history."

    Gaudio's aunt, Mary Ann Nelson, who also has Parkinson's, and her uncle, Jim Nelson, both of Cheshire, also were present at the head shaving. Mary Ann Nelson said when Gaudio's symptoms became more noticeable, she took up rowing. Nelson said that exercise is supposed to help Parkinson's patients.

    "It was funny because she was weaker on the one side than the other and she had to stop after a while because she kept going around in circles," Nelson said, laughing.

    But Nelson began to cry when talking about the support from the academy community. "She's, um," Nelson paused. "Found a home here."

    Gaudio's parents, Margaret and Robert Gaudio, who live in New Jersey, where Jen Gaudio is from, will be coming to New London on Saturday to be with their daughter.

    Gaudio doesn't shy away from talking about her diagnosis, which officially came in 2009.

    "Actually, one of the first things that she said to me was that 'I have Parkinson's, so I have this, that and the other,' and I was like 'OK, whatever,'" said Catherine Cummings, who is one of Gaudio's interns at the museum and her roommate. Cummings helps Gaudio around the house and also drives her around.

    "What she has dealt with, she has done with so much more grace and strength than I think I would ever be able to," Cummings said.

    Gaudio is frank and at times witty when discussing the inherent struggles of her progressive neurological condition, for which there is currently no cure.

    "You're basically a walking chemical cocktail when you have Parkinson's," she said Thursday. "It's so different for so many different people," she continued, describing the combinations of drugs patients may take. "I take six different pills four times a day."

    The medications taken for Parkinson's can cause side effects; in Gaudio's case, they cause dyskinesia, which she said means "I can't stop moving."

    In 2007, Gaudio had surgery on a ripped tendon in her right ankle. She had the same surgery on her left ankle in 2008.

    "That's when the Parkinson's symptoms started, immediately after the (first) surgery," Gaudio said Friday. She spoke while lying on the floor in her office at the academy to relieve pain in her back.

    After the first surgery, she started being unable to use her left arm, and with the second surgery she began having difficulty using her left leg. She was tested for a nerve impingement and a stroke, which doctors thought she might have had while on the operating table. One doctor gave her a prescription for restless leg syndrome.

    "I always kind of expected it was Parkinson's but I never really wanted to think very much about it," Gaudio said. "I mean, none of the options were really good."  

    She also was tested for ALS, known as Lou Gehrig's disease, and muscular dystrophy.

    "I kept asking for a get-one-free MRI because I had like 10 or 15 in a row," Gaudio joked.

    Dr. Jason Gerrard, assistant professor of Neurosurgery and of Neurobiology at the Yale School of Medicine and one of Gaudio's doctors, said the average age of onset for Parkinson's is usually in the 60s, but that there are patients who get it at a younger age.

    Gerrard said the goal of the brain stimulation surgery is to treat symptoms like tremors and dyskinesia, which Gaudio suffers.

    "It helps in two ways," Gerrard said by phone Friday. "It can actually treat the dyskinesia itself, and it often allows patients to decrease the amount of medication taken."

    Gerrard said the surgery has been around for 20 years and has become increasingly popular. The Movement Disorders Clinic at Yale-New Haven performs three or four of these surgeries a month, Gerrard said.

    Gaudio said she will be awake for the 8-hour surgery. Yale is one of the hospitals that can perform the surgery on patients when they're asleep or awake, Gerrard said.

    Gaudio said she hopes to regain some of her independence after the surgery, and to be able to take less medication. The side effects of the medicine, Gaudio said, are almost worse than the disease itself.

    Around the time that Gaudio was diagnosed, she got the job at the academy, where she's been working since November 2008.  

    "It's always been kind of like an odd thing. God smacked me with one hand and handed me something else with another," she said.

    j.bergman@theday.com

    Twitter: @JuliaSBergman

    Jen Gaudio, curator at the Coast Guard Museum at the Coast Guard Academy, turns to talk to her roommate, Catherine Cummings, while at the Norwich DMV taking care of last minute chores Thursday, April 30, 2015 before she has brain surgery May 4. Gaudio has early onset Parkinson's disease and will have surgery to help reduce some of her symptoms. Cummings is also an intern at the Coast Guard Museum. (Dana Jensen/The Day)
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    Jen Gaudio, curator at the Coast Guard Museum, with students in the Senior Enlisted Leadership Course through the Leadership Development Center while teaching their History and Heritage portion of their course at the museum Thursday, April 30, 2015. Gaudio has early onset Parkinson's disease and will have brain surgery May 4. (Dana Jensen/The Day)
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    Jen Gaudio, curator of the Coast Guard Museum at the United States Coast Guard Academy, reacts after having her head shaved at the Lee Rail Lounge, at the Officers Club at the academy in New London Friday, May 1, 2015 prior to having an upcoming surgery for early onset Parkinson's disease. (Tim Cook/The Day)
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