On June 21, the first day of summer, North Salem resident Sheila Simone will set out on a journey of 115 miles. The 67-year-old nurse and grandmother will participate in a nine-day walk across the Italian island of Sicily to raise awareness and funds for Alzheimer’s and Parkinson’s diseases.
It’s a mission that is close to Simone’s heart, as she has had first-hand experience with Alzheimer’s disease. As a nurse, Simone cared for residents on the Alzheimer’s unit at Salem Hills Rehabilitation and Healthcare in Purdys. And Simone saw her sister-in-law Josephine Simone suffer with Alzheimer’s for two decades before passing away from it in 2017.
“When Jo was diagnosed 20 years ago, she knew it was a death sentence,” Simone said of her late sister-in-law. “There was no cure then and there’s no cure now.”
According to the Alzheimer’s Association, every 65 seconds someone in the United States develops the disease. Data from the Parkinson’s Foundation estimates that nearly one million people will be living with the disease in the U.S. by 2020. There is no cure for either disease.
Josephine’s passing, and the lack of any foreseeable cure, has had a tremendous impact on Simone and her close-knit family. Her nephew Vincent Simone, Josephine’s son, produced a documentary film, “10 Mountains 10 Years,” which follows an international team of mountain climbers as they scale ten of the world’s highest peaks to raise awareness and funds for the two diseases.
Simone’s walk will be chronicled in another awareness-raising movie Vincent is producing, called “The Pilgrimage to Enlightenment.” The film will chronicle the patients and advocates who will traverse the Magna Via Francigena in Sicily, a recently discovered pilgrimage route to the 2,400-year-old ruins of the Temple of Asclepius. The region is considered by some to be the birthplace of healthcare.
Having witnessed the effects of Alzheimer’s up close, Simone recognizes how devastating the illness is, both for those who are diagnosed as well as for their families. It slowly takes away a patient’s dignity and also robs the patient’s family of any sense of security.
“The disease really hit home for all of us when Jo had wandered from her home and we couldn’t find her. We were going door to door,” she said.
The walk will present its own challenges. There is the summer heat to contend with, and exposure to nine hours of sun each day. Participants will cover from eight to 16 miles each day, with the longest day topping out at 13 miles.
While it’s a distance Simone has not previously covered, she is prepared. She plans to carry a backpack with all the essentials: a water bottle, wipes, rain gear, sunscreen, extra socks. “And A&D ointment for my feet,” she adds, noting the toll she expects the hike to take on her mode of transportation.
To train for the trip, Simone has been walking with her gear in local areas that mimic the unpaved and hilly terrain she’ll encounter in Italy, including at Clarence Fahnestock State Park and along Reservoir Road in Katonah. She has been averaging about eight miles per day.
To get through the more challenging aspects of the trip, Simone will call on the memories of Jo—reflecting on both the good times they shared as family as well as the more trying times they endured throughout the later stages of Jo’s illness.
And at the end of each day, Simone will be greeted by her husband Phillip and their granddaughter Simone. The trio will travel to Italy from the U.S. together, with Philip and the younger Simone driving the route and joining Simone and the rest of the walking group each night for dinner and a stay at a local B&B.
Simone’s eight grandchildren are her most enthusiastic supporters: “They say ‘nanny, are you really going to walk that far?!’”