When Jo Ann Schneider was diagnosed with Parkinson’s disease, her husband, Bob, embraced his marriage vow of caring for her — as the saying goes, in sickness and in health.
The Schneiders, members of Ascension Parish in Chesterfield, also found support from the St. Louis chapter of the American Parkinson’s Disease Association — Jo Ann has attended exercise classes to help with mobility, for example, while Bob has benefited from resources for caregivers. They wanted to do something to give back.
Bob had studied organ and piano at the former St. Louis Institute of Music decades ago. As a child, he had been fascinated hearing organists such as Stann Kann, resident organist at the Fox Theatre; and Mario Salvador, music director at the Cathedral Basilica of Saint Louis. An eye injury kept him from pursuing a career as a professional organist, but he never let go of his love for music.
Enter Pipes for Parkinson’s.
“I said, what if we just did one of those do-it-yourself fundraising events?” he recalled. “Pipes for Parkinson’s was perfect with the alliteration — it worked. So she says, ‘yeah, I think it’s a good idea.’” Bob reached out to a few friends connected with the St. Louis chapter of the American Guild of Organists and ran the idea by them to host an organ concert.
He recruited six people from the guild for the first concert in March at Little Flower Church in Richmond Heights, which raised more than $5,000 for the St. Louis chapter of the American Parkinson’s Disease Association. The next concert will be held July 6 at Holy Infant Church in Ballwin, featuring organist Tim Clark.
Jo Ann received her diagnosis more than seven years ago. The neurological movement disorder affects the brain and causes difficulty with movements. Some of the most common motor symptoms include tremors, stiffness or rigidity of the muscles and slowness of movement. Other non-motor symptoms include sleep problems, constipation, anxiety, depression and fatigue, among others.
Early on, Jo Ann’s symptoms included a loss of smell and taste. Then she started losing her balance. It became noticeable when they went swing dancing, an activity the Schneiders have enjoyed since they started dating in the 1980s.
“It became apparent that maybe something more serious was wrong,” Bob said. “So that’s when we reached out to a neurologist to find out if this balance issue was permanent, or just something temporary, and that’s when we got the diagnosis.”
According to the American Parkinson’s Disease Association, an estimated 1 million people in the U.S. and 10 million worldwide are living with Parkinson’s disease. The Schneiders hope they can increase awareness through the benefit concerts. Bob said he would like to see the idea spread to other cities and expand to include pianists, choirs and more.
There are several Scripture passages that the Schneiders say they live by, but perhaps the greatest is from 1 Corinthians: “Love is patient, love is kind. It is not jealous, (love) is not pompous, it is not inflated, it is not rude, it does not seek its own interests, it is not quick-tempered, it does not brood over injury, it does not rejoice over wrongdoing but rejoices with the truth. It bears all things, believes all things, hopes all things, endures all things.”
“We are both very hopeful, but I don’t believe you can have hope without faith, and our faith continues to grow increasingly stronger day by day,” Bob said.
Pipes for Parkinson’s
Pipes for Parkinson’s, an organ concert to benefit the American Parkinson’s Disease Association, will be held at 6:30 p.m. Saturday, July 6, at Holy Infant Church, 627 Dennison Drive in Ballwin. The concert will be hosted by Holy Infant organist Tim Clark. A free-will offering will be accepted.
For more information, email pipesforparkinsonsstl@gmail.com.
