When Jerry Wuest began holding his left arm in an odd way, not swinging it but rather holding it across his chest in a gesture he called his “Bonaparte,” he and Sandy knew nothing about Parkinson’s disease. In the 34 years since that time, they have become two of the region’s most influential advocates for people with the progressive neurological condition. Together, they have helped raise hundreds of thousands of dollars for research and community support, while serving as role models for patients and caregivers who travel the stony path of neurological disability.
“Jerry and Sandy Wuest embody the epitome of a loving couple facing the insidious, unrelenting challenge of Parkinson’s disease,” says Kim Seroogy, PhD, director of the Selma Schottenstein Harris Lab at the James J. and Joan A. Gardner Center for Parkinson’s Disease and Movement Disorders. “Remarkably, they have done so for more than three decades. Jerry has never complained about the lot he has drawn in life, and Sandy has never wavered in her steadfast and devoted care of her husband.”
Maureen Gartner, MSN, NP-C, nurse practitioner at UC Health, has been a partner in Jerry’s care for almost 13 years. “Sandy and Jerry are a model of a loving relationship in good times and bad, and have always found the good times despite the circumstances,” she says.
In the late 1980s Sandy and Jerry Wuest (pronounced Weest) established a support group in Colerain Township for families facing Parkinson’s, and in 1995 they assumed responsibility for what would become the Jerry Wuest-Pete Hershberger Dinner Gala and Golf Outing, an event that has raised nearly $500,000 to fund area support groups and research at the Gardner Center.
The Wuest-Hershberger event will mark its 25th year with the gala July 31 and the golf outing August 1. The events will take place without Mr. Hershberger, who passed away at age 61 in 2015, and without Jerry Wuest, who has been confined to his home for two years.
Sandy and Jerry met each other in Groton, Connecticut, Sandy’s hometown, when Jerry came up to play on a fast-pitch softball team while doing administrative work with the Navy’s Atlantic Fleet. Sandy’s uncle introduced them. Sandy liked Jerry right away. “I thought he was personable, kind and considerate,” she says. “I think the thing Jerry liked about me was that I was a fan of softball.” A perfect match, they were married soon thereafter.
Sandy recalls that although Jerry was diagnosed in 1982, photographs reveal the first symptoms of the disease as far back as 1975, the year Jerry retired from the Navy. Jerry spent a good portion of his 20 years of service on diesel submarines.
“We were at a picnic at his sister’s house in the late 1970s and his mom said to me, ‘What is wrong with Jerry’s arm?’” Sandy says. “He was holding it up and not swinging it. That week we went to see a doctor, who thought he might have suffered a slight stroke. They couldn’t figure out what was wrong with him.”
After seeing three different neurologists, the Wuests found their way to the Cincinnati Veterans Affairs Medical Center, where a physician then referred them to Henry Grinvalsky, MD, a neurologist at UC. “A nurse who was a neighbor of ours said he was the best doctor there was,” Sandy says. “If a patient was asleep, Dr. Grinvalsky would come back later to see them. You knew he cared about his patients.”
Jerry continued working at a sales job until 1988, when he experienced a severe “freezing” episode while on the loading dock. His coworkers called Sandy and told her that Jerry was unable to move. “I knew he was ‘frozen,’ as they call it in Parkinson’s,” Sandy said.
Reluctantly, Jerry went on disability, while Sandy continued working. In 1990, in an effort to reduce symptoms, Jerry underwent a pallidotomy, a surgical procedure in which an electrical probe is used to destroy a small area (the globus pallidus) of the brain. (The preferred surgical treatment today is deep brain stimulation.)
The Wuests attended support groups and launched one of their own, becoming popular figures within the Tristate Parkinson’s community. “They promoted Parkinson’s awareness and camaraderie through various activities associated with the Parkinson’s Disease Support Network of Ohio, Kentucky and Indiana (PDSNOKI),” Seroogy says.
Sandy, now retired, has embraced her role as caregiver. “I’m lucky to be able to take care of Jerry,” she says. “He’s such a wonderful man. He never asked for anything; he never complains. He’s been in that bed for two years now. I can’t imagine what that’s like, knowing you’ll never get better. He loved to go out.”
“Caregivers are often the unsung heroes of Parkinson’s disease,” Seroogy says. “Sandy Wuest personifies such a heroine. I have witnessed her tender and loving care of Jerry, from physical handling to providing nourishment to gentle touches and kisses. It has not been easy at times, but Sandy has said she never regrets the many years she and Jerry have spent together, through thick and thin. It takes a special person to be a Parkinson’s caregiver: strong in body and spirit, steady, upbeat, tireless, sacrificing, loving. Sandy is not only special; she is the most remarkable, skillful caregiver I have ever met.”
— Cindy Starr