Karen St. Clair: More than a support group

Karen St. Clair went on a search for the perfect man in 2011.

“I decided to give Match.com one year, and so I wrote a very detailed intention statement,” she said.

She dated, but no one came close to sparking her interest.

Then Rob Barteletti’s profile crossed her path, and fireworks exploded. Their first date lasted five hours. “We were like twins,” she said. “Our birthdays were just four days apart.”

In fact, he checked all her boxes: kindness, financial stability, politically liberal, spiritually dedicated. But he also came with a condition: Parkinson’s disease, an incurable progressive illness that renders its victims unable to control their movements. At the time, Barteletti was 10 years into his diagnosis. It was a condition St. Clair was willing to accept for a soul mate’s love, but it wasn’t a disease familiar to her.

All that would change. And so would New Mexico.

On Nov. 1, the state medical center she initiated, the Nene and Jamie Koch Comprehensive Movement Disorder Center, opened its doors to treat movement-disabled patients on the University of New Mexico campus. It’s a bittersweet milestone for St. Clair, whose husband died Sept. 17.

St. Clair, 74, has worked to raise awareness of Parkinson’s in New Mexico and build connections between the thousands of people in the state affected by the disease, helping them find ways to live life to the fullest. Because of her efforts, she is one of The Santa Fe New Mexican’s 10 Who Made a Difference for 2022.

She was no stranger to caregiving. “My father got cancer when I was a freshman,” she said, “so I went to work evenings at a diner. I got this bug of working early and taking care of family early. That’s been the trajectory of my life.”

She and Barteletti moved to Santa Fe from Portland, Ore., in 2014 after discovering sunnier climates enabled him to live a more normal life. They married in 2017.

When they discovered there were no support groups here for people with movement disabilities, St. Clair went to work. She created the first Parkinson’s support group, and its first meeting was attended by eight people.

Three months later, she requested space for the group at the Christus St. Vincent Holistic Wellness Center, she said, “because we had so many people coming.” These days, she has more than 300 people on her email list in Santa Fe alone.

Her first statewide conference attracted 100 people. “By the time we did the third one, we had 400,” St. Clair said.

With only three movement disorder specialists in the state, St. Clair began clamoring for a treatment center.

“I knew that we would have to go into action if we wanted change,” she said. “Parkinson’s is such a complex disorder, and it’s different in every single person. Treatment has to be individualized, and that requires someone who understands the diverse cocktail of drugs you’ll need to take to manage your symptoms.”

Meanwhile, her husband continued to deteriorate. His heartache was in his loss of music. “He would have days when he couldn’t use the mouse or keyboard, which were his primary ways of creating music, but he would get so stiff he just couldn’t work on it. Parkinson’s stole his ability to play the guitar and keyboard and harmonica,” St. Clair said.

Then she met Jamie Koch, a former New Mexico legislator and UNM regent who had been diagnosed with Parkinson’s in 2017 but had to wait months to receive care.

“I went to a conference on Parkinson’s, and she gave a presentation and talked about the need for a comprehensive center for people with movement disabilities,” Koch, 87, said of St. Clair. “I went up after and said, ‘I want to help with that.’ ”

The pair created an action plan and started contacting legislators. In 2018, lawmakers approved $3.5 million to build a more than 16,000-square-foot clinic on the UNM campus.

St. Clair said she prepared speakers to testify before legislative committees, but Koch said she did so much more. “She is very skilled and knows the legislative process,” he said. “I set up an email campaign and she spearheaded that. She contacted 300 people in Santa Fe and 1,000 people statewide. She was right there with me. She’s quite a person.”

St. Clair serves as a facilitator for the Santa Fe Parkinson’s Action Group; coordinator of Parkinson’s Care Partners, ambassador for the Parkinson & Movement Disorder Alliance and a board member for the New Mexico Parkinson’s Coalition.

She also maintains email newsletters, organizes speakers and discussion topics for meetings and shares research findings and information about new area neurologists, classes and therapy options.

Shelley Winship, whose husband, Doug Cark, died in January of MSA, a rare Parkinson’s-related illness, said St. Clair has never wavered in her service to others.

“She has been there for so many others, all the while living her own story with Rob,” said Winship, who nominated St. Clair for the 10 Who Made a Difference award. “She was always there for us. Even when Rob passed away she recruited someone to take over her responsibilities so there wouldn’t be a hiccup or loss of service to anyone.”

By Marianne Todd mtodd@sfnewmexican.com Nov 28, 2022
This article was originally published in the Santa Fe New Mexican