Sherri and Joyce looked forward to the day when their husbands would retire so they could travel and spend more time with friends and family. Then ALS dramatically interfered with their plans.
Often dubbed Lou Gehrig’s Disease for the famous baseball player who announced his affliction in 1939, Amyotrophic Lateral Sclerosis is a progressive disease which robs people of their ability to walk, speak, use arms and hands, swallow and eventually, breathe. The disease affects the nerves in the brain and spinal cord. The cause is unknown. Thanks to the 2014 Ice Bucket Challenge at least more people know about the disease and its devastating toll on the patients and their caregivers.
Joyce assumed her husband’s frequent tripping was due to edging closer to his 60th birthday. “The more he fell, the more I figured he was developing something like MS, Parkinson’s or ‘Drop Foot,’” she recalls. “We went to the Cleveland Clinic and sat in shock when the diagnosis was ALS.”
Married for 35 years, Joyce and her 58-year old husband owned a thriving construction company. The man who prided himself on lifting, climbing, hammering and working countless hours could now barely walk. They sold the company and moved from a 6,500 square foot home to a 1,600 square foot condo and Joyce suddenly became a caregiver.
Across town, Sherri was reveling in her husband’s recent, well-deserved retirement and their big travel plans. A life focused on travel suddenly turned to a life focused on personal mobility issues as ALS came quickly. Within two years her husband lost the use of his hands and arms.
“It can be very lonely for the caregiver,” she explains. “The worse your loved one gets, the more help they need. They are frustrated; you are frustrated.
“You just have to surrender to a higher power and realize you don’t always have control. And you have to be positive. We have had a blessed, full life together. We have met people in their ‘30s with small children who have been diagnosed. Attitude means a lot.” So does finding others who are going through the same thing. That’s why Sherri and Joyce are vocal advocates of the ALS Caregivers Group that meets every other month at Chesterwood Village in West Chester.
“It’s a place where we can speak freely and not embarrass our loved ones,” says a candid Joyce. “I met one woman who developed her own solution for her frustration. She knows that her husband is going to get irritated with his inability to do the things he used to easily do. Sometimes he takes it out on her. So she keeps her composure, goes out to the garage and screams. She lets it all out. It’s her way of coping.”
Sherri adds that attending the ALS Caregivers Group is a must when grappling with such a devastating disease, because you can ask questions and receive practical tips for any situation. One of the best discussions was on solutions for how you travel and get your loved one into the restroom. “You don’t want to ask a stranger to accompany him. You don’t want him to feel helpless and mortified. You just go in with him.”
Every ALS patient is different. The typical life span upon diagnosis is two to four years. Then there are the anomalies. Famous physicist Stephan Hawking was diagnosed in 1963 and finally succumbed to the disease in March of 2018, showing that every person has a unique experience with it.
“While the group of caregivers meets every other month to share their stories we know that every person is different. It’s the life of the caregiver that’s so similar,” Joyce explains. Sherri adds, “I encourage every ALS caregiver to take an hour every other month to attend this group so you don’t feel so alone. Along the way you’ll get helpful tips, but most of all you’ll find a support system of people who know what you are going through.”
The ALS Caregivers’ Support Group next meets on June 26 from 2-3:30 p.m. at Chesterwood Village, 8073 Tylersville Road in West Chester. Parking is free. To RSVP contact Yvonne Dressman or Whitney Taverna at the ALS Association Central and Southern Ohio Chapter at 866-273-2572.