Parish musician learns to live with MS
During a physical 35 years ago, Kathryn Weider’s doctor discovered something unusual.
"He asked me, ‘Since when are your reflexes hyperactive?’" said Weider, parish musician at Our Lady of Lourdes Church in Brighton.
The doctor referred her to a neurologist, who recommended a spinal tap. That test showed she had hallmarks of multiple sclerosis, a disease of the nervous system that can be progressively or intermittently debilitating.
Researchers are investigating what causes multiple sclerosis. Doctors think it may be the result of the immune system attacking and damaging the body’s own nerve fibers and myelin, the protective insulation that covers those fibers, said Randal Simonetti, president and CEO of the National Multiple Sclerosis Upstate New York Chapter.
Many researchers believe some people are genetically predisposed to the disease and that environmental factors can trigger its onset, Simonetti said.
Those factors may include a vitamin D deficiency in childhood, smoking cigarettes and exposure to the Epstein-Barr virus, the national MS Society notes on its Web site (www.nationalmssociety .org).
Common symptoms include walking, balance and coordination problems; fatigue; numbness; bladder and bowel dysfunction; vision problems; dizziness; sexual dysfunction; pain; decreased cognitive function; emotional changes; depression; and spasticity.
Weider said her diagnosis helped her connect her hyperactive reflexes with prior digestive difficulties and coordination problems.
For her, MS has been slow in presenting symptoms, but she now uses a scooter get around, and she is unable to use her right hand, which prevents her from playing organ and piano professionally.
Weider had worked for more than two decades as the music teacher at Brighton's Seton Catholic School and organist at Our Lady of Lourdes. Now she is Lourdes’ parish musician, directing its choirs and coordinating music for parish events.
"Kathy is a very strong and determined woman who has not let the MS stop her and who has continued to share her wonderful gifts despite all the challenges she faces daily," said her sister-in-law, Sister of St. Joseph Kathleen Weider, who also has multiple sclerosis.
"She is a real inspiration to me," added Sister Weider, who was diagnosed in 1995.
By 2000, Sister Weider found that she was no longer able to continue working as a campus minister at Nazareth College in Pittsford. She now spends her time exploring watercolor painting and providing spiritual direction -- two things she can do at home at her own pace.
"It (MS) has continued to limit what I can do, but I think the gift, the wonderful part about it, is that it has taught me so much and has given me more time for prayer and reflection," Sister Weider said. "As doors close, new doors open."
Kathryn Weider also has had to adjust to limitations. She said she used to be very active, and played sports, skied, water skied and hiked. Now it takes effort, advanced planning and the kindness of many friends to help her get about during the day.
"I had some difficulty with accepting help," she said. "I guess I had to learn it’s a grace not only to help others but to accept the help of others, having always been a very independent, ‘I’ll-do-it-myself,’ person."
"None of us really is independent," she added.
Helping people -- many who are young adults when they are diagnosed -- maintain their independence and cope with the symptoms of the disease is one of the main activities of the upstate chapter of the MS society, which serves 50 counties, Simonetti said.
The society also is dedicated to raising funds for local and national research into causes of and treatments for the disease. Medicines now on the market target individual symptoms and attempt to suppress the immune system to slow the course of the disease.
Simonetti said the downside to immune-system-suppressing treatments is that they take away the body’s ability to fight off other illnesses.
Scientists are working on medicines to rebuild myelin and to protect people at genetic risk of developing MS. Simonetti said drugs that help the myelin ward off immune-system attacks are due to hit the market in less than a year.
"This will be the next generation of methods to slow the (disease’s) progression down," Simonetti said.
Kathryn Weider noted that one of her best therapies doesn’t come from a pill or an injection, but rather from Lourdes’ choirs.
Even if she feels crummy during the day on a Wednesday, she said going to choir rehearsal that night helps turn her mood around.
"By the time I get home, I’m so jazzed I can hardly get to sleep," she said. "They say music is healing. Maybe that’s one of the gifts I have been given."
Facts on multiple sclerosis
* About 400,000 Americans and about 2.5 million people worldwide have the disease.
* Women are twice as likely as men to have MS, and Caucasians and people who lived farther from the equator in their childhood have a higher incidence of the disease.
* Most people are diagnosed between the ages of 20 and 50.
* MS is not contagious and is not directly inherited.
* Most people with MS have a normal or near-normal life expectancy and do not become severely disabled.
Source: National MS Society