A Missouri couple's life changed when the 69-year-old husband was diagnosed with Parkinson's disease. Their travel, routines, and daily life have shifted. The disease also profoundly altered their sex life, a topic the American Parkinson Disease Association describes as "practically inevitable" to be affected.
Dr. Rebecca Gilbert, the APDA's chief mission officer, says many couples struggle with the disease's toll on intimacy, often feeling shame. To assist, the APDA launched the "ParkinSex" kit, which includes a book, card game, and sensory items like a blindfold and massage stone.
"There are all these obstacles... many couples sort of throw their hands up," Gilbert explains. "That is what we wanted to rally against."
Parkinson's is a progressive neurological disorder with motor symptoms like tremors and non-motor symptoms like fatigue. Its variability means the impact on sex differs greatly for each patient.
Gilbert advises expanding the definition of intimacy beyond intercourse. "There are other ways to have an intimate and sexual relationship," she says. The condition often introduces a caretaking dynamic, making it vital for couples to maintain a romantic perspective.
The Missouri couple acknowledges their world is shrinking, causing grief and anger. Yet, the disease has forced them to find new ways to express love, through frequent kisses, holding hands, and verbal affirmations.
"You have to tell people you love them while they're here," the wife says. She urges other couples not to give up on intimacy or each other. "It's so much more than the act of sex."