“Like Our Second Family”
One Couple’s Journey with APDA
“Like Our Second Family”For Trudy, the news that she had Parkinson’s disease (PD) came at the end of a 3-year struggle to diagnose her symptoms. Having been given various diagnoses (including at one point, Lyme disease) you can imagine the frustration she was feeling.
“I didn’t want to accept it,” she says, “I still thought they were wrong.”
Married to her husband Bill for 47 years and living on Staten Island, NY, for just as long, the couple liked to dance, exercise, and go for long walks. It was unclear how PD would affect their way of life.
That’s when a friend with PD introduced the couple to the American Parkinson Disease Association (APDA). They were looking for information, for answers – and for others who understood what they were going through.
Facing an uncertain future
They had questions about treatment. As Bill explains, “A big part of the disease is the medication…no one person takes the same medicine, or the same dose. And…every time you go see the neurologist, they’re constantly doing something with the medicine to tweak it.”
Trudy adds, “Some of the medicine makes me feel better, but then I get bad dyskinesia [uncontrolled, involuntary movement] from it.”
“People who understand me”
At APDA, Trudy and Bill have been able to attend educational programs and hear from doctors and social workers to learn more about living with PD. They also participate regularly in dance, yoga, art, and Tai Chi classes.
The opportunity to connect with others has been equally if not more important than the information and exercises they learned.
Bill has benefited from the support groups for care partners. “It’s a safe place where you can go and speak your mind, and not worry about anybody giving you any negative feedback.”
Trudy says that to her, APDA means “Camaraderie. Support. Just getting together with people [who] understand me.”
“Like our second family,” Bill echoes. Trudy says that other people with PD know that the disease is more than just a tremor, and that just because she looks fine doesn’t always mean she feels fine.
When she’s feeling down, or unmotivated to go to a class or group, Bill will encourage her…and she’s always glad she went.
Hope, optimism…and determination
They both remain upbeat about the future. Bill says, “Hopefully new medicines down the line will, I don’t know about curing it, but make life a little bit easier for the patient.”
Trudy is participating in a clinical trial to explore the effectiveness of MRI-focused ultrasound therapy for PD patients like her.
Despite their challenges, they make an effort to maintain an active lifestyle and participate in whatever activities they can. They practice the dance moves they learn at class between sessions and try to get out and walk every day.
Bill’s advice to others in similar situations? “Just keep moving!”
Programs like the ones that Trudy and Bill have participated in are only possible because of generous donations from people like you. Thank you for making it possible for us to support them as they continue to live life to the fullest.