"Ever since my husband learned about his diagnosis, he has been working so hard to accomplish his agenda, that I feel forgotten," explained one spouse with tears in her eyes.
"As my Parkinson's disease has progressed, I feel less attractive," worries a patient with PD. "I cannot help but worry that my husband will, you know, find someone else."
Susan Caine frequently hears similar concerns in her outreach role at the Pacific Parkinson's Research Center in Vancouver. Today she co-facilitated a session on Changes in Intimacy with Parkinson's disease at the World Parkinson's Congress. She knows about the changes that occur in the lives of people with Parkinson's, as well as those of spouses and partners.
Carmen Dyck, the other co-facilitator of the workshop, uses the analogy of an unwanted guest to help participants visualize the intrusion of PD in their lives. "Imagine that you have just settled down in your most comfortable chair, and you are engaged in your favorite activity. All of a sudden, you hear a knock at your door. You answer it, and an unwelcome guest lets himself in. Eventually, he is changing the channels on your TV, drinking your coffee and eating your donuts," explains Dyck.
Congress attendees see how the unwelcome guest, PD, gets in the middle of intimacies. The group discusses the whole range of intimacies from terms of endearment, shared activities, touch, and closeness in the bedroom.
The outline for the workshop was adapted largely from the book, "Living a Healthy Life with Chronic Conditions." Patients walk through exercises by asking questions such as:
- What challenges to intimacy do you face?
- What possibilities for intimacy remain?
- What skills do you need to learn to adapt to Parkinson's being an unwelcome guest in your relationship?
This topic was one of the more popular of the Congress. The session went over, but nobody was complaining.
