Sandy McWilliams walking 700 miles to Pennsville to raise awareness of PSP

PENNSVILLE TWP. — Sandy McWilliams, a former Pennsville resident, will walk 700 miles this summer from her home in Kentucky to her mother’s house in Pennsville to raise awareness on progressive supranuclear palsy, a rare disease that her mother is fighting.

PSP is a rare, fatal brain disease that McWilliams’ mother, Allene Stoneman, 76, was diagnosed with a couple of years ago. Roughly 20,000 Americans suffer from the disease which can cause slurred speech, difficulty swallowing, and loss of balance.

“You can’t do anything about a disease if when people and doctors are asked about it, they don’t know. It’s not good for people not to know about this disease so I wanted to find a way to make people aware of PSP,” said McWilliams, 53.

McWilliams said her mother was a real perfectionist growing up. Everything she did was done perfectly whether it was cleaning or sewing. She remembers her mother always saying, “When you’re doing work, do it and do it well.”

However, in the summer of 2005, Allene started to change and people outside the family were noticing. She had a lack of interest and sometimes when she tried to talk her words would be garbled.

At first, it was believed Allene suffered from Alzheimer’s. Even her husband Estel thought it was old age. While one doctor believed she may be suffering from PSP, a second opinion said she suffered from Alzheimer’s.

McWilliams began conducting her own research on PSP and eventually found there was research being conducted in Louisville, Ky., where she lives. She brought her mother in for an appointment and it was confirmed that Allene did indeed suffer from PSP.

So McWilliams decided to find some way to raise awareness about the disease which took two years to be correctly diagnosed. Then one day she came up with the idea for the walk.

She explained when children are first learning how to walk, their mothers say “walk to mom” when they are taking their first steps. This is McWilliams’ theme for the walk.

Since her mother can’t walk, McWilliams will walk to her mother to raise awareness.

Starting today, she will begin her 700-mile walk which will go through the back roads of Kentucky, Ohio, West Virginia, Pennsylvania, Maryland, Delaware, and will end in New Jersey. The walk will take seven weeks and McWilliams expects to arrive in Pennsville on July 23 or 24.

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