Mary was no stranger to Parkinson’s Disease. After three years of watching the condition take its toll on her mother and ultimately claim her life, she knew the symptoms well. So when her husband came home from work one evening and told her he thought he had the disease, she didn’t want to believe it.
Coming to Terms With The Reality of it All
It wasn’t until months later on a trip to Florida that denial was no longer an option. As they headed out for their first fun-filled day at Disney, Mary handed the resort map to her husband who guided them on every trip they took. He studied the map until they both realized he couldn’t understand what he was seeing. “I was devastated,” Mary says. “I thought to myself, I can’t do this. I can’t do this again.” Mary had to gather every bit of strength inside her to calm Ray and herself to get them through the rest of the trip.
The Journey to Diagnosis
When they returned home a neurologist performed tests and confirmed the Parkinson’s diagnosis. “His dementia was worse at first, then it was the Parkinson’s, the shakiness and bad nightmares.” He also suffered from depression and irritability, often directed at Mary. “The Sundowner’s syndrome started in the evenings, then switched to mornings. It was so hard to stay calm and understand this angry person wasn’t really him.” Ray had additional medical conditions Mary’s mom didn’t, which made her second round with Parkinson’s even more challenging. She was thrown back into a caregiving role and felt discouraged.
Mary’s Discovery of Hope Grows
One day at the Parkinson Foundation where Ray attended exercise classes Mary came across a flyer for the annual Hope Grows Celebrating You program at the Pittsburgh Botanic Garden and decided to go. She enjoyed the day-long caregiver respite event, participating in activities focused on meditation, massage, essential oils, and flower arranging. After learning of the various caregiver support programs offered by Hope Grows, she attended the Powerful Tools for Caregivers seminar and continues to drop in for the monthly caregiver support group when she can. “There are lots of support groups out there,” Mary says, “but none of them are warm, welcoming, and cozy like Hope Grows.” She explains that the environment is home-like and comforting and gives her the caregiver respite time she needs to talk with others who have gone through similar trials and sometimes just vent her frustrations.
Understanding Life with Parkinson’s Disease
“We used to go on incredible vacations, to Niagara Falls, the Smokey Mountains, to Gettysburg to see the Civil War reenactments, but now we can’t. I’m angry that Parkinson’s has taken this away from us.” While she misses the things in her life that Ray’s condition has made impossible, with Hope Grows’ caregiver respite programs and support, she is finding ways to cope. She is planning short weekend trips and both she and her husband enjoy spending time with friends at a neighborhood senior center. She is finding ways to enjoy life instead of surrendering it to caregiving. Not all plants need sun to grow. Many flourish in shade, and given the right environment, all living things can thrive.