North Huntingdon peripheral neuropathy group offers unique support

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William Wilshire slowly walks into the Brush Creek Evangelical Lutheran Church in North Huntingdon, relying on his cane for support and a brace on his left leg.

The 75-year-old North Huntingdon resident joins nine other people in a room where the common thread is the disease which they struggle with on a daily basis, for which there is no known cure and treatments only relieve the symptoms — peripheral neuropathy. The Pittsburgh Area Neuropathy Support Group that meets in the church along Brush Creek Road gives them the opportunity to talk about their disease.

“We share ideas with each other about what has worked and what hasn’t worked,” in treating the symptoms, said Wilshire, an organizer for the support group. “We have different symptoms and not everything works” for each person, he said.

While members know they will not be cured of the disease that robs them of the ability to operate their muscles, Wilshire said, “you can learn to live with it.”

Surprisingly, the local neuropathy support group is the only one in Pennsylvania listed by The Foundation for Peripheral Neuropathy in Buffalo Grove, Ill. The nonprofit seeks to fosters collaboration among neuroscientists and physicians who determine the areas that hold the most promise in research and treatment that can reverse, reduce or possibly eliminate peripheral neuropathy.

The group has an email list of some 60 people in Westmoreland and Allegheny counties, including Ginny Thornburgh, widow of the late Pennsylvania governor Richard Thornburgh, who had suffered from neuropathy.

The support group started about 10 years ago at Excela Westmoreland Hospital in Greensburg. Barring covid restrictions, the group meets in person monthly from April through October. They have had speakers who offer information about how to live with the disease.

Wilshire has lived with the peripheral neuropathy for the past 15 years.

He first noticed symptoms when he felt his socks “bunching up” in his shoe and thinking it was because the socks had drooped. Instead, his foot muscles were contracting.

“It’s a classic sign of neuropathy,” Wilshire said. “It was not hard to diagnose.”

Wilshire, who grew up in Wilkinsburg, believes his neuropathy was caused by six back surgeries that damaged his nerves. Those problems have left him stooped, standing shorter than his 6-foot-3-inch frame.

“If my back is having a bad day, my feet have a bad day,” said Wilshire, a Slippery Rock University graduate who retired after 35 years as an elementary and junior high school teacher in Monroeville’s Gateway School District.

Wilshire recently obtained a brace on his left leg to correct a “drop foot” — which the Mayo Clinic says occurs when a person has difficulty lifting the front part of their foot, causing it to drag on the ground.

A recent light therapy treatment helped to relieve symptoms, but it cost $3,000, which he realizes is cost-prohibitive for many neuropathy sufferers.

A common theme among members is that “everybody wants to get well.”

“All we want is a little bit of relief,” Wilshire said.